tag:blogger.com,1999:blog-14992144130879920952024-02-20T00:59:33.639-08:00CFIDS Watch"Where have all the epidemiologists been? While the health of the species was irreparably damaged forever, everybody went on a coffee break." - Jamie Deckoff-Jones, MDAlisonnichttp://www.blogger.com/profile/08072703204217023287noreply@blogger.comBlogger23125tag:blogger.com,1999:blog-1499214413087992095.post-78801606012172557342020-08-07T17:10:00.001-07:002020-08-27T19:27:32.918-07:00Adenosyl B-12 ResourcesThis blog post contains information relevant to the deficiency of adenosyl B-12, including discussions of the impact of this deficiency, what may cause it, and how to correct it.<br />
<h3>
Books and Websites</h3>
<a href="https://www.amazon.com/s?k=could+it+be+b12+book&hvadid=77859277713809&hvbmt=be&hvdev=c&hvqmt=e&tag=mh0b-20&ref=pd_sl_3wwvg76d83_e" target="_blank"><i>Could it be B-12?</i> </a>- This book explains the importance of B-12 and its functions in keeping the body in good health - and why this deficiency is so frequently overlooked by modern medical practicioners. Of particular interest to me was the chapter on the impact of general anesthesia or dental work on the body's B-12 reserves. (Spoiler alert: nitrous oxide is hugely destructive.)<br />
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Note that this book does not address the impact of the genetic variants which impact 40% of the US population, impairing our capacity to absorb the inactive form of B-12, cyanocobalamin, which is the standard B-12 in supplements and enriched foods absorption, and it barely mentions adenosylcobalamin, which is essential to the production of energy in every cell in the body. See also the author's website, <a href="https://b12awareness.org/" target="_blank">B-12 Awareness</a>.<br />
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For more information on the methylation cycle and the MTHFR genetic variant, see these websites:<br />
<br />
<a href="https://phoenixrising.me/treating-cfs-chronic-fatigue-syndrome-me/treating-chronic-fatigue-syndrome-mecfs-glutathione-and-the-methylation-cycle" target="_blank">Glutathione and the Methylation Cycle</a> by Rich Van Konynenburg Ph.D. Rich's ground-breaking exploration of the involvement of impaired methylation cycle in ME/CFS remains, for me, the gold standard of understanding of this topic. This page lists numerous papers by him and links to an absolutely brilliant lecture in which he explains the methylation cycle in clear and lucid detail. Unfortunately, to my knowledge, Rich was not aware of the role of the COMT genetic variant and adenosylcobalamin deficiency in this illness, but if you want to truly understand the methylation cycle, this is the place to start, IMHO.<br />
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<a href="https://youarethehealer.org/health-conditions/optizmize-your-health/detox-biotransformation-pathways/methylation-and-the-methionine-cycle/" target="_blank">About Methylation And The Methionine Cycle</a> - This is a very detailed discussion of the methylation cycle, but the author completely misses the significance of adenosylcobalamin.<br />
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TBD<br />
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For more information on adenosylcobalamin, its role in the Krebs cycle (which produces ATP, the "fuel" of the cells), and the COMT genetic variant, see these websites:<br />
<h4>
<a href="https://globalhealing.com/natural-health/adenosylcobalamin-4-facts-know/" target="_blank">4 Must Know Facts About Adenosylcobalamin</a></h4>
<h4>
<a href="https://www.wellnessresources.com/news/super-form-of-vitamin-b12" target="_blank">The Super Form of B-12</a></h4>
<h4>
<a href="https://www.psychologytoday.com/us/blog/click-here-happiness/202001/what-is-the-comt-gene-and-how-does-it-affect-your-health" target="_blank">What is the COMT Gene and How Does It Affect Your Health?</a></h4>
<h4>
<a href="https://b12oils.com/b12info.htm" target="_blank">Dr. Gregory Russell-Jones' B-12 Discussion</a></h4>
<h4>
<a href="https://www.b12-vitamin.com/adenosylcobalamin/" target="_blank">Dr. Schweikart's Adenosylcobalamin Discussion</a></h4>
<h3>
<a href="https://forums.phoenixrising.me/" target="_blank">Phoenix Rising Forums</a></h3>
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Note: you may need to create a free account on Phoenix Rising Forums and log in so you can see the Message numbers (#) at the bottom of each user comment. These notes identify each message by number to make it easier for you to find the message in question.</div>
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<div>
If you are unfamiliar with the methylation cycle and/or how the MTHFR genetic variants impact this vital function, you may want to start with <a href="https://forums.phoenixrising.me/threads/the-stages-of-methylation-and-healing.21725/" target="_blank">The Stages of Methylation and Healing</a>, which gives an overview of the methylation cycle.</div>
<div>
<br /></div>
<div>
Below you'll find a number of forum posts that I feel are relevant to understanding the health impacts of adenosylcobalamin deficiency and related conditions, along with potential ways to address this, and potential adverse effects of some of these corrective actions.</div>
<div>
<h4>
<a href="https://forums.phoenixrising.me/threads/b-12-the-hidden-story.142/page-146" target="_blank">B-12 The Hidden Story</a></h4>
This very long thread contains tons of information about the methylation cycle and methyl B-12 and methyl float deficiency. Here are two messages of particular interest:<br />
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Message #2901 discusses four supplements needed to overcome 4-way deadlock of the Krebs cycle (often referred to as "methyl block" or "methyl trap". These supplements are AdoCbl (adenosylcobalamin) and LCF (L-carnitine fumarate) in addition to the more widely known methyl folate and MeCbl (methylcobalamin).<br />
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Message #2902 suggests magnesium theronate for sleep.<br />
<h4>
<a href="https://forums.phoenixrising.me/threads/need-large-amounts-of-mfolate-throughout-day-and-potassium-but-potassium-opposes-mf-help.25857/page-2" target="_blank">Large Amounts of MFolate and Potassium</a></h4>
</div>
Message #22 suggests a B-12/folate ratio; 500 mcg methyl B-12 can require 30 mg methyl folate. (I'm skeptical of this. Needs more research.)<br />
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Message #23 discusses the recycling of adenosylcobalamin in normal functioning and mentions factors (nitrous oxide, cyanide as in cyanocobalamin) that destroy the active forms of B-12. In other words, in normal functioning, B12 is mostly recycled, not used up, but if B-12 reserves are exhausted, glutathione production drops, making it difficult for the body to recover its B-12 reserves. This directly impacts the Krebs cycle and mitochondrial production of ATP.<br />
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Message #30 discusses anger/anxiety when starting AdoCbl (adenosylcobalamin) if taking carnitine and suggests microdose of carnitine and/or TMG dose. Mentions L-carnitine fumarate as a cause of anxiety/anger, but I believe this is a transient startup effect. Also mentions the COMT genetic variant and associates this with extreme anger or anxiety when increasing methylation.<br />
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(This has happened to me three times; extreme anger when I started methylcobalamin and methyl folate a decade ago, and intense anxiety when I started adenosylcobalamin in July 2020 and again when I started l-carnitine fumarate a week later.)<br />
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Message #31 says anxiety-anger activation happens with ATP startup; carnitine can produce very large hyper reactions most often. TMG can take the ATP edge off.<br />
<h4>
<a href="https://forums.phoenixrising.me/threads/the-plausibility-of-nac-inducing-b12-deficiency-or-methyl-trap.79380/#post-2261914" target="_blank">Plausibility of NAC inducing B-12 Deficiency or Methyl Trap</a></h4>
Message #2 explains how blood tests can show normal or high B-12 levels despite B-12 deficiency because low glutathione prevents proper B-12 utilization. Adverse effects when starting NAC are transient, not permanent.<br />
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Message #4 discusses the effects of "methylfolate trap" which is addressed by NAC. NAC may have nasty start-up effects but is beneficial long-term in improving glutathione production. This message also mentions the "methyl trap" theory of Yasko/Konynenburg/Fredd, which is not the same as the "methylfolate trap" discussed in this thread.<br />
<h4>
<a href="https://forums.phoenixrising.me/threads/carnitine-or-nac-for-those-with-cbs-nos-comt-suox.27165/" target="_blank">Carnitine or NAC for those with CBS+, NOS+, COMT+, SUOX+ ??</a></h4>
This thread discusses various aspects of the methylation cycle, B-12 deficiency, and transient adverse effects of NAC startup, and discusses various genetic variants which can impact methylation cycle function. I think there's a lot of good info in this thread, and a number of things that correlate with my own experience.<br />
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Message #4: NAC detox is a "methyl trap." The use of L-carnitine fumarate is better for people with FMS/ME/CFS.<br />
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Message #6: NAC reaction: headache.<br />
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Message #9: The responder believes Fredd's hypothesis that ME-CFS is caused by an underlying long-term and drastic B-12 deficiency. (I think he's right.)<br />
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Message #12: discussion of L-carnitine fumarate, AdoCbl (adenosylcobalamin), TMG (trimethylglycine), mitochondria, ATP (adenosine triphosphate), Krebs cycle. Also: it can take a year or more for mitochondria to restore; years for other functions affecting neurological & bone growth.<br />
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Message #13: NAC, hypotension, nitric oxide increase. (Hypotension, or orthostatic intolerance, has been a hallmark of my illness, especially in recent years. Treatment with the drug Mestinon proved to be both dangerous and ineffective.)<br />
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Message #16: Contains a list of basic cofactors from Fredd. Mentions his <a href="https://forums.phoenixrising.me/threads/the-stages-of-methylation-and-healing.21725/" target="_blank">levels of healing post</a>.<br />
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Message #18: Discussion of adverse effects and the inefficiency of folic acid. Also has a link to the "levels of healing" post.<br />
<h4>
<a href="https://forums.phoenixrising.me/threads/transdermal-b12-oils.33172/" target="_blank">Transdermal B-12 Oils</a></h4>
Discussion of Dr. Gregory Russell-Jones's understanding of the active forms of B-12 and his transdermal B-12 products.<h4>
<a href="https://forums.phoenixrising.me/threads/very-noticeable-improvements-in-brain-fog-using-dr-greg-russell-joness-transdermal-b12-oils-which-provide-a-similar-dose-to-b12-injections.75317/" target="_blank">Improvements in Brain Fog</a></h4>
Message #2 suggests a list of cofactors including B-2 at 20mg/day, as well as Molybdenum, Iodine, and Selenium.<br />
<h4>
<a href="https://forums.phoenixrising.me/threads/the-stages-of-methylation-and-healing.21725/" target="_blank">The Stages of Methylation and Healing</a></h4>
This is what's referred to elsewhere as the "Levels of Healing" post by Freddd. The long opening message gives a detailed discussion of methylation cycle factors and recovery from dysfunction. Read this first if you're unfamiliar with the methylation cycle and the impact of the MTHFR genetic variants.<br />
<h3>
Further exploration</h3>
<h4>
<a href="https://forums.phoenixrising.me/forums/methylation-b12-glutathione-detox-and-chelation.6/" target="_blank">Methylation B-12 Glutathione Detox and Chelation Forum</a></h4>
<h4>
<a href="https://www.researchgate.net/publication/232725459_Hypotheses_in_the_Life_Sciences_ISSN_2042_8960_The_Very_Large_Gorilla_Sitting_in_the_Room_Adenosylcobalamin_is_the_Missing_Link_its_Radical_and_Tetrahydrobiopterin_are_the_Principal_in_vivo_Catalysts_" target="_blank">The Very Large Gorilla Sitting in the Room? Adenosylcobalamin is the Missing Link...</a></h4>
Adenosylcobalamin paper by Carmen Wheatley. She hypothesizes that AdoCbl deficiency is the real source of 'NO derived pathology.<br />
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<br />Alisonnichttp://www.blogger.com/profile/08072703204217023287noreply@blogger.com2tag:blogger.com,1999:blog-1499214413087992095.post-19274829312293050112013-03-12T13:21:00.000-07:002013-03-12T14:21:50.710-07:00MTHFR ResourcesAn independent researcher, Richard van Konynenburg, PhD., developed a hypothesis that a genetic defect* which causes MTHFR deficiency might be a fundamental cause of ME/CFS and similar illnesses. Rich's hypothesis was based on <a href="http://www.dramyyasko.com/" target="_blank">Dr. Amy Yasko</a>'s work related to the same genetic defect in autistic children.<br />
<br />
Essentially, Rich's hypothesis says that the MTHFR genetic defect impairs the body's methylation pathway and consequently its ability to manufacture glutathione, and that an insufficient level of this essential amino acid compound in the body can result in many metabolic dysfunctions. These dysfunctions manifest in diverse symptoms, including fatigue, cognitive impairment, pain, thyroid dysfunction (low body temperature, intolerance of heat and cold), low cortisol levels, low blood volume, poor elimination of toxins and many others associated with ME/CFS and other chronic but poorly understood illnesses.<br />
<a name='more'></a><br />
Rich gave a lecture in Sweden in 2011 which reviews the biochemistry involved, and then discusses how his hypothesis can explain the many and varied symptoms experienced by people with ME/CFS and similar disorders such as Fibromyalgia, MCS, and chronic Lyme disease.<br />
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As a person who has been ill with "Chronic Fatigue Syndrome" for over 18 years, I feel that watching this lecture may have been the most important thing that I have done in my life.<br />
<br />
Based on both my personal experience with addressing my own MTHFR deficiency, as well as my experiments with my coil machine, I believe that I was suffering with a chronic Lyme infection, as well as chronic coinfections by pathogens often found in people with Lyme disease. However, I now believe that my chronic Lyme disease and coinfections are only part of the picture.<br />
<br />
Equally important is my MTHFR deficiency. As Rich explains, this genetic defect impairs the body's ability to process and eliminate toxins. He points out that toxins place additional stress on the body - and that stress of any kind aggravates the MTHFR deficiency. It's a vicious cycle, and unless action is taken to address the genetic defect, there is no way for the body to recover.<br />
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Since the process of killing pathogens with my coil machine was releasing large amounts of toxins, and my body - due to the genetic defect - was unable to efficiently remove these toxins, overall I felt little improvement. During the summer of 2012, when I was at the peak of killing Lyme spirochetes, my condition deteriorated dramatically. Because, I believe, of the buildup of the toxins from their dead little corpses, I felt even sicker than I had earlier in the year.<br />
<br />
Now that I am addressing my genetic defect with nutritional supplements which supply crucial nutrients which my body cannot otherwise produce because of the defect, I am experiencing noticeable improvement.<br />
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Below are links to resources which have helped me to understand the relationship between my genetic defect and my long-term illness.<br />
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<h3>
Richard van Konynenburg</h3>
<a href="http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/$%7Bweburl%7D" target="_blank">Lecture, Sweden, 2011</a> - The definitive discussion of Rich's hypothesis. This video is in three parts totaling over 3 hours, but it is very informative as well as (for me, at least) quite entertaining. Rich was a great speaker and was brilliant at explaining the background biochemistry which ties the MTHFR genetic defect to the myriad complex of symptoms experienced by people with ME/CFS, Fibromyalgia, chronic Lyme disease, and other similar disorders.<br />
<br />
See also the <a href="http://www.mecfs-vic.org.au/international-mecfs-clinicians-and-researchers#Konyenburg" target="_blank">Slides</a> in PDF form from the above lecture, and the pages below on Phoenix Rising:<br />
<ul>
<li><a href="http://phoenixrising.me/treating-cfs-chronic-fatigue-syndrome-me/treating-chronic-fatigue-syndrome-mecfs-glutathione-and-the-methylation-cycle" target="_blank">Glutathione and the Methylation Cycle</a> - Papers discussing the theory behind Rich's hypothesis, and proposed treatment protocols. This page also has links to the three parts of the above lecture. </li>
<li><a href="http://phoenixrising.me/research-2/glutathione-depletionmethylation-blockades-in-chronic-fatigue-syndrome/a-simple-explanation-of-the-glutathionemethylation-depletion-theory-of-mecfs-by-rich-von-konynenburg" target="_blank">A Simple Explanation of the Glutathione/Methylation Depletion Theory of ME/CFS</a> - Just what it says.<br /> </li>
<li><a href="http://phoenixrising.me/treating-cfs-chronic-fatigue-syndrome-me/treating-chronic-fatigue-syndrome-mecfs-glutathione-and-the-methylation-cycle/simplified-treatment-approach-based-on-the-glutathione-depletion-methylation-cycle-block-pathogenesis-hypothesis-for-chronic-fatigue-syndrome-cfs-by-rich-van-konynenburg-ph-d" target="_blank">Simplified Treatment Approach Based on the Glutathione Depletion- Methylation Cycle Block Pathogenesis Hypothesis for Chronic Fatigue Syndrome (CFS)</a> - Rich's suggested treatment protocol. A modified form was used in a promising clinical trial conducted by Rich and Dr. Neil Nathan.<br /> </li>
<li><a href="http://phoenixrising.me/research-2/glutathione-depletionmethylation-blockades-in-chronic-fatigue-syndrome/is-glutathione-depletion-an-important-part-of-the-pathogenesis-of-chronic-fatigue-syndrome-by-richard-van-konynenburg-independent-researcher" target="_blank">Is Glutathione Depletion an Important Part of the Pathogenesis of Chronic Fatigue Syndrome?</a> - A (relatively) concise bullet-point presentation of the reasoning behind Rich's hypothesis. Great for review once you've watched the lecture.</li>
<li><a href="http://phoenixrising.me/archives/13738" target="_blank">A Tribute to Rich van Konynenburg</a> - A wonderful remembrance of this brilliant and remarkable man. This page also contains a number of interesting and useful links.</li>
</ul>
<h3>
ILADS Boston 2012 Lectures</h3>
In the fall of 2012, ILADS held a conference in Boston. Rich van Konynenburg sadly died a few days before he was scheduled to <a href="http://www.ilads.org/lyme_programs/boston/speakers/bio_vankonynenburg.php" target="_blank">present a lecture</a> at this conference.<br />
<br />
Rich and Neil Nathan, MD, conducted a promising clinical study based on Rich's hypothesis. At the conference, in Rich's absence, Dr Nathan presented a brief overview of the methylation/glutathione biochemistry and a very upbeat review of the results of the study. He also made a related presentation about his work based on Richie Shoemaker's neurotoxin theories and treatments.<br />
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At the same conference, Wayne Anderson, ND, discussed biotoxins and the methylation pathway.<br />
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All of these videos are available (for $15 each) on the <a href="http://ilads.org/ilads_media/boston-videos/" target="_blank">ILADS 2012 Boston Videos</a> page.<span style="color: #0000ee;"> </span>Dr. Nathan's discussion of partially blocked methylation pathways and the clinical study he conducted with Rich van Konynenburg is entitled "Got Methylation?"<br />
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<h3>
Information and Resources</h3>
Here are links to additional sites with more information about the genetic defect and its consequences, as well as treatment information and supplement resources.<br />
<h4>
Overview and Symptoms</h4>
<ul>
<li><a href="http://www.methyl-life.com/what-is-mthfr.html" target="_blank">What is MTHFR?</a> - Overview by Jamie Horn.</li>
<li><a href="http://www.holisticprimarycare.net/topics/topics-a-g/functional-medicine/1353-mthfr-mutation-a-missing-piece-in-the-chronic-disease-puzzle" target="_blank">MTHFR Mutation</a> - Overview by Bianca Garilli, ND. </li>
<li><a href="http://mthfr.net/mthfr-mutations-and-the-conditions-they-cause/2011/09/07/" target="_blank">MTHFR Mutations and the Conditions they Cause</a> - from MTHFR.net, Dr. Ben Lynch's site.</li>
<li>
<a href="http://www.methyl-life.com/symptoms-of-mthfr.html" target="_blank">Symptoms of MTHFR Deficiency</a> - from Methy-Life.com, Jaime Horn's site.</li>
</ul>
<h4>
Doctors</h4>
<ul>
<li><span style="font-weight: normal;"><a href="http://mthfr.net/" target="_blank">Ben Lynch: MTHFR.net</a> </span>- Very informative site, with a very good video on the main page. Dr. Ben is clearly passionate about this condition. There is an active conline ommunity of people responding to his information and asking questions.</li>
<ul>
<li>
<a href="http://mthfr.net/read-this-first/2012/01/25/" target="_blank">Read this First</a></li>
</ul>
<li><a href="http://www.renewashoe.com/medical/" target="_blank"><span style="font-weight: normal;">Neil Rawlins</span></a><span style="font-weight: normal;"> - Includes his excellent video, as well as other useful information</span></li>
<ul>
<li><a href="http://www.rawlins.org/mthfr/mthfr.html" target="_blank">MTHFR Information</a> - Includes Neil's <a href="http://www.rawlins.org/mthfr/MTHFR%20protocol.doc" target="_blank">treatment protocol</a> </li>
</ul>
<li><a href="http://www.nwhealthcare.net/" target="_blank">Stephen Smith</a></li>
<ul>
<li><a href="http://www.youtube.com/watch?v=3KylT1Muvq8" target="_blank">MTHFR & Fibromyalgia</a></li>
<li><a href="http://www.mindmeister.com/12694596/mthfr-related-health-problems" target="_blank">MTHFR Related Health Problems</a> </li>
<li><a href="http://www.mindmeister.com/12721370/mthfr-treatment" target="_blank">MTHFR Treatment</a> </li>
</ul>
<li><a href="http://www.gordonmedical.com/our_practitioners.html" target="_blank">Gordon Medical</a> - Neil Nathan and Wayne Anderson (see above) practice here.</li>
<li><a href="http://www.enlander.com/" target="_blank">Derek Enlander</a> - CFS specialist in New York City; video on main page discusses methylation pathway.</li>
</ul>
<h4>
Supplement Sources</h4>
<ul>
<li>
<a href="http://www.methyl-life.com/" target="_blank">Methyl-Life</a> - Excellent video by Jamie Horn on the main page; useful list of resources. I have the utmost respect for Jamie, and a very deep appreciation for all the information she has shared. </li>
<ul>
<li><a href="http://www.methyl-life.com/what-is-mthfr.html" target="_blank">What is MTHFR?</a></li>
<li><a href="http://www.methyl-life.com/methylfolate-types.html" target="_blank">Product Comparison</a> - At the bottom of this page is a terrific table showing different sources for methyl folate and methyl B-12. Especially useful for people like me who can't tolerate the high dosages contained in combination products like Methyl-Life and Methyl Guard.</li>
</ul>
<li><a href="http://www.seekinghealth.com/" target="_blank">Seeking Health</a> - Dr. Ben Lynch's site sells supplements and other products aimed at mutants like me.</li>
<li>Vitacost - <a href="http://www.vitacost.com/solgar-folate" target="_blank">Solgar Methyl Folate 400 mcg</a></li>
<li>iHerb - <a href="http://www.iherb.com/Solgar/Metafolin-Folate" target="_blank">Solgar Methyl Folate 400 mcg</a></li>
<li>Swanson - <a href="http://www.swansonvitamins.com/brand/Jarrow+Formulas%2C+Inc./cat1/B+Vitamins/q" target="_blank">Jarrow Methyl Folate and Methyl B-12</a></li>
<li>Agape - <a href="http://agapenutrition.com/methyl-b12-10121000.html" target="_blank">Jarrow Methyl B-12 1000 mcg lozenges</a></li>
<li>Pure Formulas - <a href="http://pureformulas.ecomm-search.com/search?catalog=yhst-37598795206756&.autodone=http%3A%2F%2Fstore.yahoo.com%2Fyhst-37598795206756%2F&query=jarrow+methyl+b-12&x=0&y=0" target="_blank">Jarrow Methyl B-12 500, 1000, and 5000 mcg lozenges</a></li>
<li>Amazon</li>
<ul>
<li><a href="http://www.amazon.com/Jarrow-Formulas-Methyl-B-12-Lozenges/dp/B00A5M0ZBM/ref=sr_1_9?s=hpc&ie=UTF8&qid=1357586826&sr=1-9&keywords=Jarrow+Formulas+-+Methyl+B-12" target="_blank">Jarrow Methyl B-12 500 mcg lozenges</a> </li>
<li><a href="http://www.amazon.com/Jarrow-Formulas-Methyl-B12-1000mcg-Lozenges/dp/B002FJW3ZY/ref=pd_sim_gro_7" target="_blank">Jarrow Methyl B-12 1000 mcg lozenges</a></li>
<li><a href="http://www.amazon.com/Jarrow-Formulas-Methyl-Nutritional-Supplement/dp/B007LEO3OW/ref=pd_sim_hpc_1" target="_blank">Jarrow Methyl Folate 400 mcg</a></li>
<li><a href="http://www.amazon.com/Solgar-Folate-Metafolin-Tablets-Tabs/dp/B001LQY9ZO/ref=pd_sim_hpc_15" target="_blank">Solgar Methyl Folate 400 mcg</a></li>
</ul>
</ul>
Make sure you get B-12 lozenges, not tablets or capsules, because only the lozenges are sublingual, meaning they can be dissolved under the tongue. (See below for more information.)<br />
<h4>
Additional Information</h4>
<ul>
<li>
<a href="http://dpuadweb.depauw.edu/$1~cfornari/DISGEN/Webpage/index.htm" target="_blank">Depauw University MTHFR Study</a> </li>
<li><a href="http://findingtherootcause.blogspot.com/2011/02/mthfr.html" target="_blank">Finding the Root Cause: MTHFR</a></li>
<li><a href="http://cfspatientadvocate.blogspot.com/2011/11/mt-sinai-conference-rich-van.html" target="_blank">CFS Patient Advocate</a> - Discussion of Rich van Konynenburg's hypothesis. </li>
<li><a href="http://www.tldp.com/issue/11_00/gaby_b12.html" target="_blank">Vitamin B12: Injectable vs. Oral</a></li>
<li><a href="http://www.drfuhrman.com/library/folic_acid_dangers_and_prenatal_vitamins.aspx" target="_blank">Folic Acid Warning</a></li>
</ul>
<br />
<h3>
Notes</h3>
<h4>
Start Slowly!</h4>
Several of the doctors above caution against beginning with high dosages of methyl folate and methyl B-12 if you have ME/CFS and/or Fibromyalgia, because these may cause significant side effects as toxins which have built up in the body over the years are released. Rich van K. makes the same caution.<br />
<br />
I can attest from bitter experience that this is indeed possible; I experienced excruciating pain for several weeks until I cut way back on the dose of methyl B-12 I was taking, and eliminated methyl folate entirely.<br />
<br />
At this time (mid-March 2013) I can only tolerate 500 mcg of methyl B-12 per day, and it took me a while of two days on, one day off to work up to that amount on a daily basis. Any more than that and the pain starts coming back. I hope I'll be able to increase the dosage soon, and add some methyl folate as well.<br />
<h4>
Sublingual, not Swallowed</h4>
Some of the doctors listed above say that methyl B-12 is not absorbed by the stomach lining, or is destroyed by stomach acid. This is why I am using a sublingual version, made by Jarrow. I've been able to order this through various web sites (see above).<br />
<h4>
Danger: Cyanide and Folic Acid!</h4>
Because I have the MTHFR gene mutation, I am always very careful to distinguish between the methyl (active form) versions of B-12 (cobalamin) and folate (B-9) and the inactive forms commonly sold in drug stores and used as food additives.<br />
<br />
These inactive forms, cyanocobalamin and folic acid, are not only essentially useless to people with the MTHFR gene defect, <a href="http://www.drfuhrman.com/library/folic_acid_dangers_and_prenatal_vitamins.aspx" target="_blank">they can actually be harmful</a>. (See also the quote from a fellow called Sergio on <a href="http://phoenixrising.me/archives/13738">Rich's Tribute Page</a>: "[Rich] diagnosed a cyanide poisoning I was suffering from taking cyanocobalamine.") <br />
<br />
I avoid all foods and supplements containing either folic acid or cyanocobalamin.<br />
<br />
Also, I am careful to point out to any doctors who order lab tests that the standard tests for B-12 and folate are useless for people with the MTHFR gene mutations, like me. In fact, my B-12 level was high in a test done last fall, at the same time that my mutation was detected. It was high because, although I'm ingesting plenty of the inactive form from food, my body can't convert it to the active form, methylcobalamin, or methyl B-12.<br />
<br />
To my knowledge, the only lab in the US which can test properly for the active form of folate (methyl folate) and related glutathione deficiency and other dysfunctions is <a href="http://www.hdri-usa.com/" target="_blank">Health Diagnostics and Research Institute</a> (formerly Vitamin Diagnostics) in South Amboy, NJ. Rich van Konynenburg recommended their <a href="http://forums.phoenixrising.me/index.php?threads/methylation-pathways-panel.4711/" target="_blank">Methylation Pathways Panel</a>.<br />
<br />
<br />
*Although there are variations by region and also by ethnic background, at least one of the two possible MTHFR genetic defects is estimated to be present in approximately 40% of
the world's population. In test sample, approximately 30% had the 677 mutation, while 7 to 14% had the 1298 mutation, which associated with, among other things, Chronic Fatigue Syndrome.Alisonnichttp://www.blogger.com/profile/08072703204217023287noreply@blogger.com3tag:blogger.com,1999:blog-1499214413087992095.post-1232571387780131392013-01-10T14:39:00.000-08:002013-05-02T07:23:06.465-07:00I'm a Mutant!<h3>
MTHFR Deficiency and Defective Genes (Updated 1/21 and 5/2/13)</h3>
<br />
<b>Mutated Genes and Me ... and Maybe You?</b><br />
<br />
Recently, thanks to a suggestion by a treasured friend, I found out that I have a genetic defect which results in
something called MTHFR deficiency. This mutation can cause a wide range
of symptoms:<br />
<br />
<a href="http://mthfr.net/mthfr-mutations-and-the-conditions-they-cause/2011/09/07/" target="_blank">MTHFR Mutations and the Conditions they Cause</a> - from MTHFR.net, Dr. Ben Lynch's site<br />
<a href="http://www.methyl-life.com/symptoms-of-mthfr.html" target="_blank">Symptoms of MTHFR Deficiency</a> - from Methy-Life.com, Jaime Horne's site<br />
<br />
Some
of the symptoms include depression, addictions (smoking, drugs, and
alchohol), miscarriages (my poor mother had four!), Chronic Fatigue Syndrome, chemical
sensitivities, Fibromyalgia (if I recall correctly, my older sister had this),
autism (I suspect I may have a relatively mild form of Asperger's),
childhood cognitive development deficits, migraines, Alzheimer's, and
dementia (poor Mom again!)<br />
<a name='more'></a><br />
I have one of each of the two mutations, 677 and 1298. This is the worst combination, but either of these mutations alone can cause trouble. If you have any of the MTHFR-related symptoms, it might be a good
idea to get tested. Also, if you have the mutation, your children (if any) might
have it as well.<br />
<br />
Treatment is not expensive; it basically
consists of taking a special type of the various B vitamins, primarily
methylated B6 and B12 and methylfolate (<i>NOT </i>folic acid!), as well
as adjustments to the diet and other environmental factors.<br />
<br />
However, it can be tricky to find the right
vitamin balance for each person. (I'm hoping to see a doctor who has
experience treating this deficiency.)<br />
<br />
When properly treated, some of the symptoms can resolve quite
quickly, sometimes in a matter of a few days or a week. Also, treatment
for some conditions, such as depression, can resolve the condition
without the side effects often associated with traditional drug
treatments. <br />
<br />
More information:<br />
<br />
<a href="https://www.dropbox.com/s/ocafppzl82w7c5b/MethylTetraHydroFolate%20Reductase%20Deficiency.doc" target="_blank">MTHFR Deficiency</a><br />
<a href="http://www.methyl-life.com/" target="_blank">Methyl-Life</a><br />
<a href="http://mthfr.net/read-this-first/2012/01/25/" target="_blank">MTHFR.net: Read this First</a><br />
<a href="http://findingtherootcause.blogspot.com/2011/02/mthfr.html" target="_blank">http://findingtherootcause.<wbr></wbr>blogspot.com/2011/02/mthfr.<wbr></wbr>html</a><br />
<a href="http://www.holisticprimarycare.net/topics/topics-a-g/functional-medicine/1353-mthfr-mutation-a-missing-piece-in-the-chronic-disease-puzzle" target="_blank">MTHFR Mutation</a><br />
<br />
If it turns out you do have one or both of these mutations, keep in
mind that this is <i>not </i>bad news; it's really good news! It means you can
get treatment and hopefully resolve some or all of any related symptoms
you may have.<br />
<h4>
I Crash and Burn</h4>
In late October, on the advice of the personnel in the clinic who tested me for MTHFR, I began taking something called Methyl-Guard, but after a few weeks I developed excruciating pain and spasms in my left shoulder and upper arm. I had to stop taking the Methyl-Guard.<br />
<br />
After a lot of massage therapy and trigger point work, my shoulder is improving. But clearly this was not the correct solution for me.<br />
<br />
I began digging through the material on some of the sites listed above, and learned a lot more about methylation and how supplementation for the deficiency can go wrong. Sure enough, one of the symptoms of over-methylation is muscle pain.<br />
<br />
[TBD: more detail here about how methylcobalamin is not absorbed through the stomach, so requires either sublingual form or injection - and Methyl-Guard is not sublingual. Also, Dr. Lynch insists that it's vital to start with methylcobalamin and not add methylfolate until it is established that one is tolerating the methylcobalamin and has reached a certain dosage. Also note connection between folic acid supplementation and increased cancer risk.]<br />
<h4>
My Bold Experiment</h4>
I've ordered some methylfolate and methylcobalamin, both in sublingual
forms, and I plan to start experimenting myself.<br />
<br />
Meanwhile, as a test, I took one Methyl-Guard
(which has both methylfolate and methylcobalamin) on Sunday morning. I had a lot of pain and spasms
later in the day, but I also had much better energy that afternoon and
evening, lasting through yesterday evening. Today I'm okay, better than
usual, but definitely not as good as yesterday. <br />
<br />
So I think I definitely need the methyl B's, but I have to figure
out how much of each. Maybe I can do this myself, and skip the expensive
and time- and energy-consuming visits to doctors. That's why I ordered
the methyls.<br />
<br />
BTW, if you are interested in learning more about the MTHFR gene
mutation and how to treat them, here are the sites I've been using:<br />
<br />
<a href="http://www.methyl-life.com/" target="_blank">Metnyl-Life</a> - Jaime Horne's site<br />
<a href="http://nwhealthcare.net/index.php?id=64" target="_blank">NW Healthcare: MTHFR</a> - Dr. Steve Smith's site<br />
<br />
<a href="http://mthfr.net/" target="_blank">MTHFR.net</a> - Dr. Ben Lynch's site<br />
<br />
<br />
There
is a lot of MTHFR info on both of these sites. I loved the video by
Jaime Horne, the woman who runs the Methyl-Life site. (The video is right on the
main page.) I think this is a good place to start.<br />
<br />
The <a href="http://youtu.be/3KylT1Muvq8" target="_blank">MTHFR and Fibromyalgia talk by Dr Stephen Smith</a>
explains more about the condition, and is a good place to start for an overview
of MTHFR diagnosis and treatment. I loved this video too. The discussion and video on Dr. Smith's web site is an excellent next step.<br />
<br />
I also found Dr. Smith's mind map to be quite interesting: <a href="http://www.mindmeister.com/12694596/mthfr-related-health-problems" target="_blank">MTHFR Related Health Problems</a><br />
<br />
For a more in depth understanding, there is a long and detailed video discussion of MTHFR
diagnosis and treatment by Ben Lynch on his main page. He also suggests watching some other videos <span style="color: #0000ee;">(</span>see his web site and many other resources on my new <a href="http://cfidswatch.blogspot.com/2013/03/mthfr-resources.html">MTHFR Resources</a> page.)<br />
<br />
While watching Dr. Smith's videos, I felt like he could have been
talking about me. Fine for many years, but then when subjected to a
major stressor (two in my case) the toxins that had been quietly accumulating
suddenly overwhelmed my immune system, ruining my health. And unless the genetic
deficiency is addressed with the right methylated B vitamins, there's
nothing to make the body recover.<br />
<br />
My gut is telling me that addressing my own methylated B vitamin and
resulting glutathione deficiencies is key to my recovery. <br />
<h4>
MTHFR and Coiling to Kill Pathogens</h4>
There is a lot more info on Dr.
Smith's site, and many pages on Dr Lynch's site and on Jaime's
site as well. I feel like I have just scratched the surface, and there is a
whole lot more to learn. <br />
<br />
However, I am very excited about this, and the possibility that finding the right dosages of the methyl B's for myself might help me improve more quickly. I found Dr Smith's discussions of how the
MTHFR defect causes glutathione deficiency to be particularly exciting
because glutathione is key in the disposal of toxins, and toxin
elimination has been the limiting factor for me in killing Lyme and
coinfections. I've had to progress very slowly to keep the herxing to a tolerable level.<br />
<br />
If I can improve my body's toxin disposal mechanisms, that will
allow me to be more aggressive with the coil machine in killing the
pathogens. Also, if I can purge the toxins more quickly, the herxes may
turn out to be less confusing, and more useful as feedback and therefore
a better diagnostic tool.<br />
<br />
I'm going to see if I can get someone to draw blood to test me for a
glutathione deficiency. Since the body needs the methyl B vitamins to make glutathione, if this is low, that will further confirm that MTHFR deficiency is a problem for me.<br />
<br />
Also, if I can find an MTHFR-literate doctor near me who is seeing new patients, I'll book an appointment, but meanwhile I'm not going to just
sit around waiting for someone to have an opening in their
schedule!<br />
<br />
I am going to work very hard to figure this out for myself. I can't wait for the supplements to get here!<br />
<h4>
Update, 1/21/13</h4>
I wasn't able to find any of the supplements I needed locally, so I had to order everything online. The first shipment, 1000 mcg Jarrow Sublingual Methyl B-12 (methylcobalamin) arrived on January 9. I immediately took one tablet, and another later in the day.<br />
<br />
I quickly found that two milligrams in the space of a few hours was too much for me right now. The first tablet gave me a noticeable increase in energy and mental clarity within an hour or two, but a second tablet a few hours later made me hyper and prone to anger.<br />
<br />
After some experimenting, I have settled on one 1000 mcg tablet of methyl B-12 after waking, followed every 3 or 4 hours by a 500 mcg tablet (also Jarrow sublingual).<br />
<br />
I also took 50 mg of niacin (a 100 mg tablet cut in half) twice a day for a while, to help deplete the excess methyl B-9 (methylfolate) from the high dosage of Methyl-Guard which I took in December, and which I suspect caused the pain and spasms in my left shoulder and upper arm. These symptoms have diminished significantly since I started this regime.<br />
<br />
After several days of two 50 mg doses of niacin, I tried taking a 100 mg tablet whole. This was followed by a very strong "flush" - a pretty intense sensation of burning or prickly needles on my forehead, the top of my head, and down both arms. I figured this meant I'd cleared the excess methylfolate, so I stopped taking the niacin.<br />
<br />
I've also been taking fish oil to help reduce the inflammation in my arm and shoulder (and also in my back and right foot, and elsewhere in my body). A couple of days ago I started taking two 500 mg capsules of turmeric with Meriva (a more bioavailable form of curcumin) for the same reason. The pain and inflammation is significantly reduced, but not gone.<br />
<br />
Ben Lynch says that methylfolate will aggravate any inflammation, so while I am eager to start taking it, I am going to be patient and hold off until I have gotten rid of all the existing pain and soreness.<br />
<br />
There has been a clear improvement in my condition in the past 10 days. I have had a couple of crashes after being out and about too long, but the crashes have lasted only one day rather than the more typical several days to a week. Overall, compared to the last few months of 2012, I have more energy and better cognition, and much less pain than in December (but more than I had prior to starting the Methyl-Guard on October 26).<br />
<br />
To put things in perspective, this past weekend I completed a small project which involved making two hacksaw cuts through 3/4" aluminum angle, drilling 14 small holes in the aluminum, and lifting a 7 lb monitor to shoulder height.<br />
<br />
This took me two days, and left me quite tired, but a few weeks ago - and for most of the last couple of years - a project like this would have been impossible for me. In December I had to ask my brother and nephew to help me with a similar but smaller project; I wasn't able to make even a single hacksaw cut or drill any holes.<br />
<br />
So the progress so far has been encouraging. I'm actually quite excited, but trying to be careful not to let my hopes get too high because I've had short term improvements from many different medicines and supplements in the past, only to have my body fall back to its previous level of ill health or worse.<br />
<br />
The real test will be to see how I do over the next several months. If by spring I am able to go for 5 to 10 minute walks every day or every other day without crashing, then I will know I am making real progress.<br />
<h4>
Coiling for Babesia and Lyme</h4>
While all this was going on I have continued to coil for Babesia every second or third day, holding the coil over my liver and increasing by 30 seconds each time. I did not notice significant herxing from this in recent weeks.<br />
<br />
On January 10 I reached 10 minutes, so on 1/15 I did 10 minutes on my liver again and added 2 minutes on each of 15 points around my body and extremities, including a new point over my sternum. This was followed by a pretty nasty headache a few hours later, which diminished slowly over the next couple of days. On 1/18 I repeated this, and again developed a headache, although less severe and of shorter duration.<br />
<br />
From this I'm assuming that I did have Babesia and that I am cleaning out the last of it from my bone marrow and sternum. I'm hoping that my methyl B-12 regime is helping my body clear the toxins from the dead little Babs bugs more rapidly than it would have been able to before.<br />
<br />
I've also reduced the interval between my Lyme sessions (432 Hz for 33 minutes, 5 minutes on abdomen and 2 minutes on each of 14 points) from 14 days to ten. That seems to have actually helped reduce the herxing from these sessions. Next month I plan to further reduce the interval to 7 days.<br />
<h4>
Update, May 2</h4>
After a lot of experimentation, I have found that right now the highest dose of methylcobolamin (B-12) that I can tolerate is 500 mcg per day. This is hugely less than the 5000 mcg recommended by Dr. Ben and others, but if I take any more than 500 mcg, the pain and cramping in my upper arms and shoulders gets too intense. Also I get pain in my feet, knees, and lower back.<br />
<br />
A few weeks ago I started on small doses of methylfolate, and I am now up to 400 mcg per day. After I started this I developed a fair amount of pain in my teeth, oddly, but now that has pretty much subsided. This is also far less than the recommended dosage, but for now it's all I can handle.<br />
<br />
Hopefully as my body adapts to a reactivated methylation pathway, I will be able to increase my intake of both methylcobolamin and methylfolate.<br />
<br />
During some research into vitamin deficiencies which might cause pain and muscle spasms, I learned that repletion of B-12 after long-term deficiency can cause potassium deficiency because as B-12 is restored, the body starts making more blood cells, and this process uses up potassium. So I have started taking a lot of potassium in various forms, and I have noticed a significant improvement in the muscle pain and spasms.<br />
<br />
I'm now coiling for Babesia for 40 minutes three times a week, and for Lyme for 33 minutes every week. Sometimes I have symptom peaks that appear to be herxes from these sessions, but generally these harsher symptoms resolve within a few days.<br />
<br />
<i>Note: The above post is a work in progress. Most of this page
consists of extracts from two emails I wrote recently to family and
friends. I originally planned to reorganize it and clean it up, and add some followup
thoughts, but I wanted to get this MTHFR information up as soon as
possible in case any of my readers might find it useful.</i> Alisonnichttp://www.blogger.com/profile/08072703204217023287noreply@blogger.com4tag:blogger.com,1999:blog-1499214413087992095.post-3067263797342597132012-10-16T13:23:00.000-07:002012-10-16T22:36:38.226-07:00One Year of CoilingIn a few days I will have been experimenting with my coil machine for a year. Since <a href="http://cfidswatch.blogspot.com/2012/05/coiling-update-may-2012.html" target="_blank">my last update</a> was in May, almost six months ago, I figure it's time for another. <br />
<br />
From May till the end of August I coiled for Lyme every two weeks and coiled for Bartonella every
other day. During this time I got sicker and sicker. The Lyme sessions were
causing more and more severe herxing (<a href="http://en.wikipedia.org/wiki/Herxheimer_reaction" target="_blank">Jarisch-Herxheimer</a> reactions) which lasted longer and longer. <br />
<br />
I think this was probably because for the entire time from late January through the end of August I increased the length
of each Lyme coiling session by 15 seconds compared to the previous session, so in each session I was killing
more and more Borrelia spirochetes. As a result, the toxins from their tiny
corpses were evidently accumulating in my body faster than my immune system
could get rid of them.<br />
<a name='more'></a><br />
But I was approaching my goal of 5 minutes on Lyme. By August I was very close; I did 4 minutes 30 seconds on August 1, and 4 minutes 45 seconds on August 15. I was very much looking forward to September; I was so eager to reach my goal!<br />
<br />
However, those last two weeks of August were brutal; the symptoms included very bad headaches, trembling, fatigue, and pain throughout my body. This was the worst I'd felt in a long time.<br />
<br />
Finally on September 1 I decided to give myself a little break, and
instead of increasing the length of the session to 5 minutes, I just did
4 minutes 45 seconds again.<br />
<br />
This worked;
the symptoms for the next couple of weeks were considerably less severe,
which was a big relief. But the goal was always to get to 5
minutes on my abdomen, so on Sept 15, I did 5 minutes. The
herx was worse than the one from the Sept 1 session, but not nearly as bad as I was having in July and
August. I think toxins had been accumulating over time, and that two week break of repeating the same session duration gave my body time to recover, and purge a lot of the toxins that had been building up over the preceding weeks.<br />
<br />
Perhaps another reason why August was so bad for me was that this was apparently the peak time for the fall flare-up of Lyme this year. I'm told that every year in the spring and fall, Borrelia which have been hiding in the body in inactive cyst form come out of cyst form and transform into spirochetes. These newly active pathogens cause a flare-up of symptoms.<br />
<br />
Plus, if you are coiling for them, you'll be killing off a lot more of the little monsters. Thus the symptoms during this time are much more severe. And I've heard through the grapevine that this year the flare-up was in late August.<br />
<h4>
Bartonella<br />
</h4>
In September, after talking with a friend who's been through this process, I decided to stop coiling for Bartonella. I'd been doing 33 minute sessions for Bart every other day since late January, and I didn't seem to be herxing from them any more. My last Bart session was on Sept 29, although I plan to do occasional sessions to check and make sure it hasn't come back.<br />
<h4>
Taking Stock</h4>
Hopefully now I am through most of the worst of the process. The plan is to
continue doing Lyme for 5 minutes every two weeks, and also start working up to 2
minutes on each of 14 points around my body - chest, arms, back, legs,
hips, etc. I also plan to gradually decrease the intervals between Lyme sessions from the current two weeks to 7 days.<br />
<br />
If all goes well, soon I will be at the full 33
minutes on Lyme (5 on the abdomen, plus 2 each on the 14 points) every week. The 2013 spring flare-up should be the last big Lyme hurdle for me, and then I should be able to start tapering down on the sessions at 432 Hz.<br />
<br />
Encouragingly, my friend
Sue, who has been doing this for several months longer than me, said
that doing the additional points on Lyme did not cause noticeable herxing
for her. Also, the man who built my coil machine said he has had the same experience. I hope that's true for me too! <br />
<h4>
Supplemental Health Supports</h4>
In mid September I saw <a href="http://www.katinamakris.com/" target="_blank">Katina Makris</a>, who is a homeopathic practitioner who has recovered from Lyme herself, and has experience with a Rife machine (which is similar in concept to my coil machine but quite different in terms of design specifics and operation).<br />
<br />
This was a fantastic appointment. Katina is a great listener, and after hearing my story she made several suggestions for supplements. I am now taking Liver Liquid homeopathic drops from <a href="http://www.mhpvitamins.com/id115.html" target="_blank">Mountain States Health Products</a>, to help my liver cope with all these toxins, as well as almost 2 grams of magnesium per day to help my digestion. I must say that the latter is working; I'm much more regular than I've been in many years, and I'm sure it is very helpful to get those toxins out of me instead of having them sit around in my colon, seeping back into my system.<br />
<br />
Katina also suggested Pure Encapsulations Mitochondria-ATP and Bragg Liquid Amino Acids. Katina said that the Mitochondria-ATP gives her a great deal of energy, and I found that it seems to be improving my energy too. I sometimes have a brief sensation of feeling quite energetic, although I must be careful not to actually consume too much energy because I will abruptly crash.<br />
<br />
Another person who has experience using a coil machine to kill Lyme suggested using "green juice" to help detox. This involves using a juicer to turn fresh green vegetables and other produce into juice. I've been using this and it does seem to help alleviate the symptoms from herxing.<br />
<br />
All in all, I view these supplements, juices, and
homeopathics as excellent support for my body during the grueling
process of expunging millions of tiny monsters and the poisons they
produce.<br />
<h4>
Avoiding Vitamin D</h4>
I am also being very careful to avoid Vitamin D, both in supplements and in food such as fish and enriched milk and other products.<br />
<br />
I decided to do this after reading about the <a href="http://cfidswatch.blogspot.com/2012/05/coiling-update-may-2012.html#marshall" target="_blank">Marshall Protocol</a>, which asserts that in people with Lyme, the Borrelia cause the body to produce far more 1,25-D per gram of Vitamin D consumed than it should and that the resulting excessive 1,25-D serves to suppress the immune system. This immune system suppression is one of of Lyme disease's principle survival mechanisms, and of course it helps other pathogens thrive at the same time.<br />
<br />
However, according to the Marshall Protocol, lowering Vitamin D intake to bring 1,25-D back into the normal range allows the immune system to return to an effective level of functioning. In particular the immune system recovers the ability to destroy the cell-wall-deficient form of Borellia, which can't be killed by a coil machine.<br />
<br />
Since I recently tested very low in Vitamin D but very high - at the extreme top of the normal range - in 1,25-D, I think it makes sense for me to avoid Vitamin D for now.<br />
<br />
However, I am not taking any antibiotics, either herbal or prescription, so I am technically not following the Marshall Protocol.<br />
<h4>
What's Next?</h4>
Although I believe I've killed most of the
active Borrelia spirochetes in my body now, I'm far from well. For one
thing, I'm fairly sure there are still a lot of inactive Borrelia in
cyst form, and that many of these will come out of cyst form next
spring. There may be some very bad weeks in store for me in the early part of next year.<br />
<br />
I also feel that it's likely that I have
Babesia, even though my Igenex results for it in 2009 were negative. Igenex only
tests for one or two forms of this, and there are many different kinds.
Also, even their sensitive lab often gets false negatives. This is a
hard pathogen to test for.<br />
<br />
But my symptoms at the time of
initial onset strongly resembled those of Babesia, and I still have
some of them, so I think it's worth going through the process of coiling
for it to see if I herx. I plan to start on a Bart frequency at 10 seconds and progress in increments every two or three days. If I reach 3 minutes without herxing, I'll move on to another pathogen. But if I herx, I will continue increasing until I reach 10 minutes.<br />
<br />
I
also believe I probably have Mycoplasma Fermentins. If so, this is likely a big factor in my chemical sensitivities. Once I've figured
out where I am with Babs, and I'm past the worst of any herxing I have
with it, I plan to begin sessions for Mycoplasma.<br />
<br />
I've also
started using 432 Hz, the same frequency I use for Lyme, on my mouth, to
address ongoing problems with gingivitis. I've got several other
frequencies to try for oral pathogens as well.<br />
<h4>
Bottom Line</h4>
The bottom line is that I am doing considerably better than I was a year ago. I'm able to do my own grocery shopping almost every week (although I had to ask for help a few times during very bad times in the past several months). My social life (aside from the Internet) is still virtually nonexistent, but I've been able to have lunch with a friend a couple of times in recent months, and I can usually sit up for several hours during visits from family two or three times a month.<br />
<br />
Although I'm still sick, and have some very bad days, I've also had a few days in which for at least part of the day I feel fairly good. I had one notable day in which, for a few hours, I actually experienced what it felt like to be well, which was amazing. It had been so many years since I felt that way that I'd forgotten what it was like!<br />
<br />
I've also been able to start taking short walks. I seem to be able to manage a six minute walk every three days or so. Last week I did relatively vigorous walks of 7 and 9 minutes on successive days, but I was extremely fatigued for two days afterwards, so that was evidently too much. <br />
<br />
I am sure I still have many months of killing pathogens and feeling awful ahead of me, but I have hope that sometime in the not too distant future, I will be able to resume a more or less normal life.<br />
<br />
<div style="text-align: center;">
DISCLAIMER</div>
<br />
I am not a doctor or a health care practitioner. This blog describes my
own personal experiences and opinions. It is presented for informational
and educational purposes only. It is not intended to prevent, diagnose,
treat, or cure disease. The statements on this blog have not been
evaluated by the FDA.
Alisonnichttp://www.blogger.com/profile/08072703204217023287noreply@blogger.com2tag:blogger.com,1999:blog-1499214413087992095.post-73959566625548683782012-10-16T13:22:00.002-07:002013-01-10T15:18:34.150-08:00Can Oscillating Magnetic Fields Really Kill Microorganisms? Let's Ask the FDA...I found some recent discussions with two authorities on Lyme to be quite stimulating, and
after the second such discussion I went looking for an article I'd read somewhere about a study the FDA had done which showed that microorganisms can be
killed by oscillating electromagnetic fields similar to those generated by my
coil machine.<br />
<br />
After all, if the FDA has found that this technology can kill microorganisms in food, doesn't it make sense that it can also kill microorganisms - such as Lyme spirochetes - in people? Doesn't this question deserve further study?<br />
<a name='more'></a><br />
I never located the article in question, but I did find the FDA study: <a href="http://www.fda.gov/Food/ScienceResearch/ResearchAreas/SafePracticesforFoodProcesses/ucm103131.htm" target="_blank">Kinetics of Microbial Inactivation for Alternative Food Processing Technologies - Oscillating Magnetic Fields</a>.<br />
<br />
This
is not an actual experimental study but rather a review of the
literature. While the review's stated conclusion regarding the efficacy of this
technology in deactivating microorganisms is mixed, a careful perusal of
the actual experiments cited leads to some pretty clear observations.<br />
<br />
My
reading of the data cited in this FDA review is that while static magnetic fields
appear to be of little interest,
it is quite obvious that two of the studies demonstrated that
oscillating magnetic fields at specific frequencies were extremely
effective at killing a number of microorganisms, including E. Coli,
Streptococcus themophilus, Saccharomyces (a yeast), and mold spores.<br />
<br />
It's
worth noting that the strength of the oscillating magnetic fields used
in these successful experiments ranged from .15 to 40 Tesla but were
extremely short in duration, no more than a few milliseconds.<br />
<br />
A loudspeaker's magnet produces <a href="http://en.wikipedia.org/wiki/Orders_of_magnitude_%28magnetic_field%29" target="_blank">1 to 2.4 Tesla</a>.
My coil machine is many times more powerful than a loudspeaker.<br />
<br />
My machine uses an 1800 watt amplifier to drive heavy duty capacitors tuned to further amplify a
specific frequency. The output from this combination powers a much larger, heavier coil than
any found in home stereo speakers.<br />
<br />
And I run it for over 30 minutes at a
time.<br />
<br />
<div style="text-align: center;">
DISCLAIMER</div>
<br />
I am not a doctor or a health care practitioner. This blog describes my
own personal experiences and opinions. It is presented for informational
and educational purposes only. It is not intended to prevent, diagnose,
treat, or cure disease. The statements on this blog have not been
evaluated by the FDA.
Alisonnichttp://www.blogger.com/profile/08072703204217023287noreply@blogger.com1tag:blogger.com,1999:blog-1499214413087992095.post-69109451219944857932012-05-22T07:31:00.000-07:002012-10-16T14:06:57.888-07:00Coiling update, May 2012I've been coiling for Lyme for five months, so I figure it's time for an update.<br />
<br />
As I mentioned in <a href="http://cfidswatch.blogspot.com/2012/02/new-direction.html#lyme" target="_blank">an earlier post</a>, my initial experiments in coiling for Lyme resulted in brutal headaches and other symptoms followed by a few days in which I felt much better - and had more energy - than I had in a very long time.<br />
<br />
After four sessions in January using 306 Hz, I decided to switch to 432 Hz. I made this decision because a friend stressed that, while 306 is more effective at killing Lyme spirochetes than 432, it's also harder on the body. "Doug Maclean said he was vomiting up blood," she told me.<br />
<br />
[Update: I've since learned that it was 655 Hz, not 306, which made Doug vomit up blood. I've heard that Doug considers 306 Hz to be less effective at killing Lyme spirochetes than 432 Hz.]<br />
<br />
So in early February, I started over at 15 seconds on 432. I didn't get much herxing at 15, 30, and 45 seconds, which is the longest I'd gone at 306. When I reached 60 seconds on 432, the brutal headaches returned, only now they didn't start until about four days after the coiling session.<br />
<a name='more'></a>As in the 306 herxes, I also experienced severe fatigue at the same time as the headaches. Other pain throughout my body, particularly in my back, which I had injured in September 2011, also increased significantly along with the headaches. By April, I was feeling really terrible almost all of the time, with very few decent days.<br />
<br />
However, in May the herxing has been much less severe. I've had more days of feeling significantly better. My endurance, though still very poor, is such that I am able to sit up for several hours on some days. Grocery shopping is no longer quite the brutal undertaking that it once was.<br />
<br />
I believe there are several reasons for the peak in April and the subsequent improvement. But first...<br />
<h4>
Bartonella </h4>
As I mentioned in <a href="http://cfidswatch.blogspot.com/2012/02/new-direction.html" target="_blank">my previous post</a>, I began coiling for Bartonella in late October of last year. I have continued to coil for Bartonella at 832 Hz every other day. My goal was to increase the duration of my sessions until I reached a total of 33 minutes, but in January I had had to temporarily hold at 5 minutes at 13 amps per session on my abdomen, plus brief sessions at 9 amps on other parts of my body, because of a problem with my coil machine. The amplifier (which is one of the components in my coil machine) would overheat and go into clipping mode after approximately six minutes of operation.<br />
<br />
The problem turned out to be a bad amplifier. Once the amp was replaced, at the end of January, I was able to resume the process of increasing the duration of the 832 Hz sessions. By late February, I reached my goal of five minutes at 832 on my abdomen plus 2 minutes at 832 on each of fourteen other points throughout my body.<br />
<br />
I've continued this ever since. At this point, I don't seem to herx at all from these sessions, so I believe it's likely that I have killed most or all of the Bartonella in my body. However, I intend to continue these sessions for a while longer to make sure, because Bartonella's life cycle is so short, and because it is said to regrow extremely rapidly in the absence of Lyme if there is any left at all.<br />
<br />
These sessions, during which I hold an increasingly hot coil against my neck, arms, chest, back, feet, legs, hips, and abdomen for a total of over half an hour, were quite tedious until I set up a computer so that I can watch videos during the session. I have a timer that I've set to go off every two minutes to remind me to switch the coil to the next position. I use a folded towel to keep the hot coil from burning my skin. <br />
<br />
<h4>
Going Deeper at the Lyme</h4>
By the end of March I was up to 2 minutes on Lyme. By then I found that significant herxing did not begin until 2 to 5 days after a session at 432 Hz, so I increased the intervals between these sessions to as long as 8 to 12 days.<br />
<br />
While some people attack the Lyme quite aggressively, coiling at short intervals so that they are herxing continuously, I believe that it's important to give my body a rest, to allow my immune system to recover from the flood of toxins released by the dying spirochetes after each session. So I wait until a couple of days after the herx has passed before I coil for Lyme again.<br />
<br />
This is also good for my spirits, because I get to experience a few days of feeling relatively well in between the herxes, when I feel absolutely awful. These good days remind me of how I felt when I was healthy, and how I will hopefully feel most or all of the time in the future, when all the Lyme spirochetes (and cysts and cell wall deficient/L-form bacteria) are dead.<br />
<br />
I continued going up at 15 second intervals until April 13, when, after a 5 day interval, I went up from 2 minutes 15 seconds to 2 minutes 45 seconds.<br />
<br />
For the rest of April I was significantly worse. I had severe headaches, bad pain, bad fatigue, and intermittent dizziness and cognitive impairment. It was so bad that I did not coil for Lyme again until April 30th.<br />
<br />
However, I have not felt nearly as bad since, despite continuing to advance at 15 seconds per session, less than two weeks apart. As of May 12th I did 3 minutes 15 seconds at 432 Hz, and I developed severe fatigue on May 19th and 20th along with bad headaches which became more persistent on the 20th. These symptoms diminished on the 21st, and as of today, the 22nd, are largely gone.<br />
<br />
The interval between a 432 Hz session and the onset of significant herxing now seems to be about seven days. I believe this is because I've killed most of the easy-to-reach spirochetes, and I'm now killing those which have burrowed deeper into my body, into tissues which are less accessible by the immune system, such as connective tissues, bone and perhaps even brain tissue.<br />
<br />
I theorize that it takes longer for the toxins from the dead spirochetes to emerge from these more remote locations. Another theory is that the EMF doesn't actually kill the spirochetes, but merely stuns them, and that the immune system is what actually kills them. Since the immune system can't readily access the denser bone and connective tissues, it takes longer for this to happen.<br />
<br />
Either way, it's a very noticeable change from when I first started coiling for Lyme, when the herxes came on within a few hours and were over within a couple of days. I'm taking it as a sign of progress.<br />
<h4>
The Spring Bloom</h4>
There are several possible reasons that I can think of that I was so much worse in April. One, of course, is that I got more aggressive, going up 30 seconds after an interval of only five days after the previous session. However, there are some additional possible reasons:<br />
<br />
1. <b>The Spring Bloom</b>. I'm told that Lyme bacteria go through a life cycle each spring and fall, in which they emerge from cyst form into spirochete form. The times I was told were early February (presumably through April or May) and August or September through as late as November. Since I'm in northern New England, perhaps this "bloom" of spirochetes peaked for me in April. Interestingly, my friend Sue, who lives at almost the same latitude an hour's drive from me, was also much worse in April and improved greatly in early May, just as I did.<br />
<br />
2. <b>Vitamin D</b>. After reading about the <a href="http://www.lymebook.com/marshall-protocol" target="_blank">Marshall Protocol</a> in Bryan Rosner's new book, I stopped taking Vitamin D supplements and started avoiding foods high in vitamin D. If my understanding of Rosner's discussion of Marshall's theory is correct, this would have caused my immune system to become more effective, allowing it to kill more pathogens and temporarily making me feel worse. More on this below.<br />
<br />
It appears that April was a "perfect storm" for me, with the Spring Bloom, aggressive Lyme coiling sessions, and a more effective immune system all ganging up to make me feel really terrible. I'm glad it's past, but I'm also glad it happened, because it means a lot more of those nasty little monsters that have been making me so sick for nearly two decades are dead.<br />
<h4>
<a href="http://www.blogger.com/blogger.g?blogID=1499214413087992095" name="marshall"></a>
Vitamin D and <span style="color: black;"> 1,25 dihydroxyvitamin-D</span></h4>
<span style="color: black;">When I read about </span>the <a href="http://www.lymebook.com/marshall-protocol" target="_blank">Marshall Protocol</a> in Bryan Rosner's new book, <a href="http://www.lymebook.com/top10book" target="_blank">The Top Ten Lyme Disease Treatments</a>, a light bulb went on for me. Essentially, Marshall says that too much vitamin D suppresses your immune system - and that the Lyme bacteria takes action to ensure that you have too much of it.<br />
<br />
It's not quite that simple, however, and some of Marshall's model is counter-intuitive. I'll try to be succinct.<br />
<br />
Vitamin D is actually not a substance which is directly beneficial to our bodies. It is merely a "food" that our bodies metabolize to create the beneficial substance, which is a secosteroid, or hormone, known as 1,25 dihydroxyvitamin-D, or 1,25 D for short.<br />
<br />
1,25 D is biologically active and essential. At the proper levels, it helps regulate the immune system (and also helps retain proper calcium levels in the bone, preventing osteoperosis.) If its levels are too low <i>or too high</i>, you will not be healthy. Bottom line:<i> the level of vitamin D in your body doesn't directly affect your health. <u>What matters is the level of 1,25 D.</u></i><br />
<br />
In healthy people, levels of 1,25 D track right along with levels of vitamin D. If you are low in vitamin D, your 1,25 D level will be low, so you need to supplement. If you've got normal a level of vitamin D, your 1,25 D level will be fine too.<br />
<br />
In people with Lyme disease, the Lyme bacteria cause your body to produce too much 1,25 D. Too much 1,25 D suppresses the immune system, allowing pathogens such as Lyme (and many common coinfections) to thrive. This is one of Lyme's principle survival mechanisms.<br />
<br />
The conventional wisdom is that vitamin D is good for your immune system. But if you have Lyme, <i>consuming (or generating) vitamin D may actually be bad for your immune system</i>. Counter-intuitive, right?<br />
<br />
But wait. There's more. When your immune system is suppressed by excessive 1,25 D, you may actually feel better - because your immune system isn't killing things it should be. You're not getting the inflammation that should be present when those beastly little pathogens are gnawing away at you.<br />
<br />
So when you <i>decrease </i>your vitamin D consumption (and/or exposure to sun) and your 1,25 D levels fall closer to the normal range, your immune system starts working again, killing Lyme and other baddies - and you start herxing. You feel worse.<br />
<br />
I read Rosner's chapter about this in March, and I immediately stopped taking my vitamin D supplement, and deliberately began to avoid foods containing vitamin D. I believe this contributed to my terrible month of April. My 1,25 D levels fell, my immune system woke up, and more Lyme bacteria started to die, aggravating my herxes.<br />
<br />
To see if I could confirm this theory, I got my vitamin D and 12,5 D levels tested. The blood was drawn in late April, several weeks after I'd stopped taking the vitamin D supplement and begun avoiding foods containing vitamin D. My vitamin D level was - as you might expect - below normal, just outside the low end of the normal range.<br />
<br />
But <i>my 1,25 D level was at the very high end of the normal range</i>, just two points below the very top end of normal.<br />
<br />
When I saw these test results, I was gobsmacked - and delighted. Assuming Marshall's theory is correct (and I understand it
properly), these results are exactly what you'd expect, given chronic
Lyme disease. Very low D, yet very high 1,25 D.<br />
<br />
In all the years I've been sick, I've had many, many tests, and very few have given any sort of useful result. Most medical tests on me have been negative; the only positives I can recall are: Epstein-Barr Virus reactivation (twice, 15 years apart), extremely low cortisol (identical flat curves, twice, 15 years apart), neurally mediated hypotension (after 20 minutes with my body vertical and motionless, my blood pressure went to 0/60 ... yes, zero!), deficient blood perfusion in the left side of my brain (two years ago), and Lyme and Bartonella (two years ago). And now this.<br />
<br />
Bingo.<br />
<br />
Note: <i>The above discussion is a brief synopsis by an amateur of Bryan Rosner's explanation of the Marshall Protocol. Please read <a href="http://www.lymebook.com/marshall-protocol" target="_blank">Rosner's chapter on the Marshall Protocol</a>, research this yourself, and <a href="http://curemyth1.org/forum9/4653.html" target="_blank">consult a doctor knowledgeable about the Marshall Protocol</a>, before reducing your vitamin D intake and/or sun exposure. In the <a href="http://www.lymebook.com/top10book" target="_blank">full version of his Marshall Protocol chapter</a>, Rosner points out that the Marshall Protocol does not work for all people who have Lyme, and the reasons for this are not understood. I believe you must be fully informed before you experiment with any aspect of this protocol.</i><br />
<br />
<div style="text-align: center;">
DISCLAIMER</div>
<br />
I am not a doctor or a health care practitioner. This blog describes my
own personal experiences and opinions. It is presented for informational
and educational purposes only. It is not intended to prevent, diagnose,
treat, or cure disease. The statements on this blog have not been
evaluated by the FDA.Alisonnichttp://www.blogger.com/profile/08072703204217023287noreply@blogger.com1tag:blogger.com,1999:blog-1499214413087992095.post-83258505880248598232012-02-06T09:31:00.001-08:002012-10-31T07:49:14.367-07:00Doug coil machine resources<b><i>Warning! See a doctor before subjecting yourself to electromagnetic fields*!</i></b><span style="font-size: small;"> </span><br />
<br />
<span style="font-size: small;">(*Excluding, of course, the perfectly safe EMF from your house wiring, your cell phone, your television, your computer, your car's engine, florescent bulbs, WiFi hotspots, cell towers, radio and TV stations, military radar, high tension lines, and other approved and highly profitable sources of EMF.)</span><br />
<br />
As it says in my disclaimer, I'm not a doctor. I'm only sharing my personal experiences. In case someone might be crazy enough to try experimenting with a Doug coil machine (or any type of Rife machine) like I've done, I've created a list of some resources I found interesting.<br />
<br />
Before an ordinary person, lunatic or otherwise, were to build or buy a coil machine, or experiment with any type of Rife machine, it would seem prudent to do some research. I started with Bryan Rosner's excellent book, <a href="http://www.lymebook.com/lyme-disease-rife-machines-bryan-rosner" target="_blank">Lime Disease and Rife Machines</a>.<br />
<br />
When I was wondering what exactly a Doug coil machine is, I found <a href="http://coilingforlyme.wordpress.com/2011/05/03/whats-a-coil-machine/" target="_blank">What's a coil machine?</a> to be quite helpful. This is part of a fascinating and meticulously maintained blog by a woman who has been experimenting with a Doug coil machine since January 2011. I also like her <a href="http://coilingforlyme.wordpress.com/2011/01/18/birthday-girl/" target="_blank">unscientific explanation</a> of how a coil machine might kill pathogens. The video of the <a href="http://www.youtube.com/watch?v=3mclp9QmCGs" target="_blank">collapse of the Tacoma Narrows bridge</a> is particularly graphic. Don't let young children or pets watch it without supervision.<br />
<br />
I also loved Bryan Rosner's <a href="http://www.youtube.com/watch?v=gQAJjb_DO_g" target="_blank">interview with Doug MacLean</a>, inventor of the Doug coil machine. His story is quite inspiring.<br />
<br />
Last but not least, I experienced a sharp stab of malicious joy while watching some <a href="http://www.youtube.com/watch?feature=fvwp&NR=1&v=wZv4GUeKuPI" target="_blank">spirochetes being stunned into stillness</a> by the EMF generated by a Doug coil machine. If you are reckless enough to watch this video, keep an eye on the corkscrew-shaped microbes. Poor little things.<br />
<a name='more'></a><br />
<b>Doug coil machine manufacturers</b><br />
<ul>
<li><a href="http://dougcoilmachine.com/" target="_blank">John Stolar</a>. John builds these machines, and his <a href="http://dougcoilmachine.com/freestuff.html" target="_blank">Free Stuff</a> page tells you how you can build your own. See also his <a href="http://sites.google.com/site/coilmachines4less/coilmachines4less" target="_blank">old site</a>. John has cut back on his rate of production, but has trained two others to build machines using the same materials and techniques that he uses. Here's his email: <a href="mailto:coilmachines4less@gmail.com" target="_blank">coilmachines4less@gmail.com</a></li>
<li><a href="http://coilmachinesnw.com/" target="_blank">John Montee</a> was trained by John Stolar to build capacitor boxes and coils. He is located in the Pacific Northwest of the US.</li>
<li><a href="http://www.dougcoilmachines4u.com/" target="_blank">Terry Fitzsimmons</a> was trained by John Stolar to build capacitor boxes and coils. He is located in northeastern US.</li>
<li><a href="http://www.actioncoilmachines.com/" target="_blank">Roger Simon</a> is currently selling the capacitor box and coil for $950, same as I paid for mine.</li>
<li><a href="http://www.coilmachinesbydoug.com/Home_Page.html" target="_blank">Doug Freeman</a>.
I had some trouble with my machine, and my supplier was unavailable. I
emailed Doug Freeman, who was very helpful. (I've since resolved the
problem, which turned out to be a bad audio amplifier. The vendor, Abe's
of Maine, replaced it.)</li>
<li><a href="http://www.coilmachines.com/%20" target="_blank">Alex Levy</a> is a longtime builder of Doug coil machines.</li>
</ul>
My machine's total cost was about $1700. That included $950 for the coil and the capacitor array cabinet, which were built by hand by my supplier, plus two off the shelf items, a <a href="http://www.qscaudio.com/products/amps/rmx/rmx.htm?lang=en" target="_blank">QSC 1850HD</a> audio amplifier ($520) and an <a href="http://www.gwinstek.com/en/product/productdetail.aspx?pid=5&mid=72&id=92" target="_blank"> Instek SFG 2004</a> signal generator ($230) which I bought from retail sources recommended by him. He was able to get me discounted prices and free shipping on those components, which saved me over $100 in total.<br />
<br />
Abes of Maine, from whom I bought my QSC amplifier, has since raised the price of the amp to $599. <br />
<br />
<b>Output Measurement Design</b><br />
<br />
The coil machines built by Doug Freeman and Alex Levy follow Doug MacLean's original plans, in that they use a voltmeter to measure the output level of the amplifier and capacitor array to the coil.<br />
<br />
John Stolar pioneered the use of an ammeter to monitor the output, rather than a voltmeter. To me, this method seems preferable, but then again I'm not an electrical engineer. I believe John Montee, Terry Fitzsimmons, and Roger Simon all use John's design.<br />
<br />
<b>Lyme disease and Rife machine information resources</b><br />
<ul>
<li><a href="http://info.lymebook.com/listings.htm" target="_blank">Rife Machine User Reports</a> </li>
<li><a href="http://www.lymebook.com/resources" target="_blank">Lymebook Resources</a></li>
<li><a href="http://flash.lymenet.org/scripts/ultimatebb.cgi" target="_blank">Lymnet Flash (The Lyme Disease Network)</a></li>
<li><a href="http://www.dfe.net/Lyme_bk.html" target="_blank">DFE Research</a></li>
<li><a href="http://www.bioelectricsforhealth.com/" target="_blank">Bioelectrics For Health</a> manufactures a plasma-type Rife machine. There are many other such manufacturers of plasma-type Rife machines, and their effectiveness is said to vary considerably. Proceed with caution.</li>
</ul>
<b>Rife machine frequency lists</b><br />
<ul>
<li><a href="http://www.electroherbalism.com/Bioelectronics/FrequenciesandAnecdotes/CAFL.htm" target="_blank">The Consolidated Annotated Frequency List</a>. This is a list of EMF frequencies that can be used to experiment on various pathogens using a Rife machine.</li>
<li><a href="http://nenahsylver.com/index.html" target="_blank">Neenah Sylver</a> publishes a more recently updated directory of EMF frequencies. </li>
<li><a href="http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/86510?" target="_blank">Rife Frequency List</a> at <a href="http://lymenet.org/">LymeNet.org</a></li>
<li><a href="http://altered-states.net/barry/rifeFAQ/Frequency-List.pdf" target="_blank">Cross Reference List of Rife Frequencies</a>. This list is organized by frequency, so you can look up a frequency and see what pathogens it is believed to affect. </li>
</ul>
<b>Lyme disease and Rife machine forums</b><br />
<ul>
<li><a href="http://health.groups.yahoo.com/group/Lyme_rife/" target="_blank">Lyme_Rife</a></li>
<li><a href="http://health.groups.yahoo.com/group/Lyme_and_rife/" target="_blank">Lyme_and_Rife</a></li>
</ul>
<b>Rife and Doug coil machine background</b><br />
<ul>
<li><a href="http://www.rife.org/" target="_blank">Rife.org</a></li>
<li><a href="http://www.lymebook.com/letter" target="_blank">Doug MacLean's letter to Bryan Rosner</a></li>
<li><a href="http://www.cancer-cure-that-worked.com/rife-cancer-trials-san-diego-bx-by-virus.htm" target="_blank">The Cancer Cure that Worked</a>. This is an excerpt from the <a href="http://www.cancer-cure-that-worked.com/" target="_blank">book by Barry Lynes</a> about Roy Rife's experiments in the 1930's, and subsequent events. Lynes has recently published a <a href="http://lymebook.com/rifes-world-barry-lynes" target="_blank">new book</a> on the same topic.</li>
</ul>
<b>Cautions</b><br />
<br />
I have read that the FDA considers Rife machines to be dangerous. I agree that they can be. I have been very careful in experimenting with my Doug coil machine, and also with a plasma-type Rife machine.<br />
<br />
The way I see it, in some ways a coil machine is analogous to a car. Used properly, a car is a very useful device. It can get us from one point to another very quickly compared to walking or riding a horse. But used improperly, a car- a device weighing a ton or more, capable of traveling at speeds far above that attainable by an unassisted human - can maim or kill.<br />
<br />
A Doug coil machine is much the same. The limited and mostly unscientific research available suggests that Doug coil and plasma-type Rife machines can destroy spirochetes and other pathogens in vitro, and many <a href="http://info.lymebook.com/listings.htm" target="_blank">experimenters report improvement</a> in their symptoms after experimenting on themselves in vivo.<br />
<br />
But a Doug coil machine contains large capacitors that store a significant amount of energy even after the machine has been turned off. Opening the capacitor cabinet and touching the conductors can result in severe electric shock.<br />
<br />
A Doug coil machine also generates a strong electromagnetic field. If this EMF does indeed kill pathogens, then their bodies can release toxins, producing a Jarisch-Herxheimer ("herx") reaction much like that produced by an antibiotic. Too much toxins released too quickly could stress the body's ability to process and excrete these toxins. Killing an overabundance pathogens would not be a good thing if the tradeoff was damage to the liver.<br />
<br />
I have been careful to always start with 15 seconds when I begin a new frequency. Even that has been followed by significant herxing. After the herx has passed, I experiment again, increasing by increments of 15 seconds, noting the severity and duration of the herxing, until I've reached my goal of 5 minutes on my abdomen and 2 minutes on each of 14 other points around my body on that particular frequency.<br />
<br />
If at any point the herxing is really bad, I don't increase the duration, but instead use the same duration for subsequent experiments until the herxing diminishes, and then try increasing by 15 seconds again.<br />
<br />
There are EMF frequencies which are said to be potentially harmful to humans. I am careful to avoid these frequencies, which include 1840 and 1910 Hz. <br />
<br />
Also, I take <a href="http://www.swansonvitamins.com/NWF544/ItemDetail" target="_blank">glucomannan</a> capsules. Glucomannan is an herb which is generally sold as a diet aid because it expands in the gut and makes you feel full. But it is also said to be very effective at binding toxins and helping the body excrete them. Others have used Welchol for the same purpose, but I have found glucomannan to work well for me, and it's much cheaper, as well as being nonprescription.<br />
<br />
So far I'm not dead yet, so I guess my approach has worked all right.<br />
<br />
<b>Disclaimer</b><br />
<br />
I am not a doctor or a health care practitioner. This blog describes my own personal experiences and opinions. It is presented for informational and educational purposes only. It is not intended to prevent, diagnose, treat, or cure disease. The statements on this blog have not been evaluated by the FDA.<br />
<br />
<b>Disclaimer No. 2</b><br />
<br />
I am not a professional humorist. The statements on this blog have not been evaluated by Groucho Marx, Bugs Bunny, or David Sedaris. The whacky statements on this blog may be less whacky than they appear. Or they might be more whacky.Alisonnichttp://www.blogger.com/profile/08072703204217023287noreply@blogger.com7tag:blogger.com,1999:blog-1499214413087992095.post-5331623872166733562012-02-06T07:22:00.000-08:002012-10-31T07:30:22.416-07:00A New Direction: Coiling for Lyme<i><b>Going over to the Dark ... er, Lunatic Fringe Side.</b></i><br />
<br />
By now you have probably heard about the <a href="http://www.nytimes.com/2012/02/07/health/fallout-from-fatigue-syndrome-retraction-is-far-and-wide.html?_r=1" target="_blank">collapse of XMRV research</a> by Judy Mikovits and the Whittemore Peterson Institute. If you haven't, details of the whole sordid story are available at <a href="http://www.x-rx.net/blog/" target="_blank">X Rx Blog</a> and <a href="http://phoenixrising.me/" target="_blank">Phoenix Rising</a>, among many other sources.<br />
<br />
The news of this disaster came at a very bad time for me. In the fall of 2009, samples of my blood submitted to <a href="http://igenex.com/Website/" target="_blank">IgeneX</a> came back positive for Lyme disease and Bartonella. I opted to try an acupuncture and herbal treatment regime with <a href="http://greendragonbotanicals.com/about/bio-of-timothy-scott.html" target="_blank">Tim Scott</a>.<br />
<br />
Through the winter of '09-10, I had some improvement, but was still far from well. In the spring, after stopping the homepathic and acupuncture treatments, I had a short period of feeling much better, but then I deteriorated dramatically. My symptoms escalated, and a new symptom, severe dizziness, emerged.<br />
<br />
By late summer 2010 I was no longer able to even do my own grocery shopping. The very limited social activities I'd been able to engage in (mainly occasional lunches with friends) came to an end. As you can imagine, these new developments were very discouraging. I'd been sick since late 1994, but I had always believed on some level that I would get well, that somehow or other I would find a way to recover. This new major progression of the illness destroyed that belief.<br />
<a name='more'></a><br />
Over the following winter my capabilities declined further. At the same time, the bad news about Judy Mikovits and the WPI began to emerge. I'd clung to the hope that as a result of their research some sort of effective treatment would eventually become available to me. By the spring of 2011, that hope was gone.<br />
<br />
For seventeen years I had been fighting a disease that had taken everything that mattered to me except my family. My job, my career, my friends, my home, all my possessions, the ability to fly, the ability to race cars, the wonderful airplane I had built myself, the marvelous car that my brother and I had built together, the tools and workshop that had made these possible. With few exceptions, everything was gone, and the things that weren't gone were in storage, too toxic to me for me to even go near them.<br />
<br />
Now hope was gone too. I had to acknowledge that the battle was over. After almost two decades of struggle, of hopes being dashed again and again, I had no more fight left in me.<br />
<br />
I began the process of letting go, of acceptance. After the onset of MCS in 2004 I'd had to accept that I was never going to return to my old life. In 2011 I began to try to come to terms with the fact that I was never going to get well, that for the rest of my life I was going to be as sick as I was then, and that I would probably continue to get sicker until I was no longer able to take care of myself. At that point it would be time to take the decision to leave the planet.<br />
<h4>
A Friend Indeed</h4>
Then a friend intervened. My good friend Sue, who had had her career as a home renovator and carpenter cut short by a very similar illness a few years before, called me. She had bought a device called a <a href="http://coilingforlyme.wordpress.com/2011/05/03/whats-a-coil-machine/" target="_blank">Doug coil machine</a>, and she was experimenting with it. Like me, she had tested positive for Lyme and Bartonella, and she believed that this machine would help her destroy these pathogens and recover.<br />
<br />
After all the things I'd tried that hadn't helped, I was very skeptical. Over the years tens of thousands of my money had gone down the drain as I looked for something that would help me get better. Spending almost two thousand dollars on a device that sounded like something from the lunatic fringe didn't appeal to me. Besides, I was into my process of letting go. Trying something new would interrupt my journey to acceptance.<br />
<br />
But Sue didn't give up. She kept calling and emailing, urging me to get a machine like hers. I poked around on the internet, learning about the theory behind the Doug coil machine and the history of Roy Rife, whose research in the 1930's laid the foundation for Doug MacLean's invention of the coil machine fifty years later.<br />
<h4>
My Own Machine</h4>
Finally, in late July of 2011, after hearing Sue's cautious description of improvement in her symptoms, I called John, <a href="http://greendragonbotanicals.com/about/bio-of-timothy-scott.html" target="_blank"></a>the man who'd built Sue's coil machine, and ordered one for myself. I also ordered a copy of Bryan Rosner's book, <a href="http://greendragonbotanicals.com/about/bio-of-timothy-scott.html" target="_blank">Lyme Disease and Rife Machines</a>.<br />
<br />
I was still really skeptical, and still working on my process of acceptance. Rosner's book sat by my bed for weeks, unopened. Meanwhile, John - who told me that at one time he had been very sick - went hiking in the mountains. It was well into the autumn before the last of the components of my machine arrived.<br />
<br />
On October 21 I began my own experiments. I found that within a few hours to a day or so after I coiled, I got an escalation of symptoms which I believe to be a Jarsich-Herxheimer reaction - a "herx" - which is said to be the release of toxins from the dying microorganisms. After the herx wore off, usually within 24 to 48 hours, I felt better.<br />
<br />
At first, when I was only coiling for Bartonella, the fluctuation in symptoms after a coiling session was moderate. Since my symptoms have always varied, I wasn't totally sure that these "herxes" were actually due to the machine. Still, I was sometimes able to do my own grocery shopping, which was encouraging.<br />
<br />
In late December I got much sicker. In early January 2012 I developed new symptoms, including stomach distress, nausea, and diarrhea. I don't know why, but I understand that the symptoms from herxing can vary a lot over time, so it seems possible that these new symptoms were caused by the die-off of Bartonella bacteria.<br />
<h4>
<a href="http://www.blogger.com/blogger.g?blogID=1499214413087992095" name="lyme"></a>
Brutal, Brutal Lyme</h4>
In mid January, after my stomach had improved somewhat, I tried coiling for Lyme. The herxing went through the roof. I had headaches more brutal than I can remember from any time since the initial onset of my illness in 1994. I had never been so dizzy. But after a few days, when the symptoms died down, I had a day or two that were better than any I'd had in recent memory. <br />
<br />
This has happened three times in succession. There is no longer any doubt in my mind that the coil machine is having an effect.<br />
<br />
Not quite four months in, I'm still in the early stages. Popular opinion seems to be that it can take from one to three years to kill all of the Lyme and coinfection pathogens in the body. I know I have a long way to go. And I don't know if I will ever get well.<br />
<br />
But I have hope again. I'm not working on that damn process of acceptance any more. To hell with acceptance.<br />
<br />
The fighter is back.<br />
<br />
<div style="text-align: center;">
DISCLAIMER</div>
<br />
I am not a doctor or a health care practitioner. This blog describes my own personal experiences and opinions. It is presented for informational and educational purposes only. It is not intended to prevent, diagnose, treat, or cure disease. The statements on this blog have not been evaluated by the FDA.Alisonnichttp://www.blogger.com/profile/08072703204217023287noreply@blogger.com7tag:blogger.com,1999:blog-1499214413087992095.post-78790732125743783502011-06-13T07:18:00.000-07:002012-02-06T07:59:38.683-08:00Failed XMRV "Replication" StudiesSeveral studies have been published in recent months in which scientists were unable to find XMRV in patients diagnosed with ME/CFS. Authors of these studies and others have claimed that these results discredit the seminal XMRV study by Lombardi/Mikovits of the Whittemore Peterson Institute and contend that Mikovits' results must have been due to laboratory contamination.<br />
<br />
As a result of these studies, <i>Science </i>magazine published an Editorial Expression of Concern, which casts doubt on the Lombardi/Mikovits XMRV study which <i>Science </i>themselves published in October 2009. Here are responses from the WPI:<br />
<br />
<a href="http://files.me.com/jdj88/keednw">Dr. Judy Mikovits </a><br />
<a href="http://files.me.com/jdj88/tnmi0f">Annette Whittemore</a><br />
<a href="http://files.me.com/jdj88/hok3p2">WPI Clinical Advisory Board</a><br />
<br />
Below is a comparison of the parameters, tests, and methodologies used in the failed studies, the Lombardi/Mikovits study and the Alter/Lo study, which found an association between ME/CFS and MLV's (Murine Leukemia Viruses). <br />
<br />
<a href="http://files.me.com/jdj88/tzgfod">A Comparison of Methods for the Detection and Association of XMRV in Chronic Fatigue Syndrome </a><br />
<br />
None of the failed studies came anywhere close to replicating the work of Lombardi/Mikovits and Alter/Lo. Saying these studies disprove anything is like saying that just because my paper airplane can't fly across the street, humans can't possibly have made it into space.<br />
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Bogus "research" and careless, sloppy reporting like this does no one any good.<br />
<br />
Thanks to Dr. Jamie Deckoff-Jones for posting this comparison. Her <a href="http://treatingxmrv.blogspot.com/2011/06/comparison-of-methods-for-detection-and.html">blog post</a> has the individual pages of this comparison in case you don't have a PDF reader.<br />
<br />
<b>True replication works</b><br />
<br />
To put the failed XMRV studies into perspective, Dr. Deckoff-Jones reports on an incident in which <a href="http://treatingxmrv.blogspot.com/2011/06/who-are-our-friends.html">a group in Munich failed to find XMRV</a>. (Search the page for Munich.)<br />
<br />
This group then contacted Dr. Mikovits and worked with her on their next attempt, and lo and behold, <i>they found XMRV!</i><br />
<br />
<b>Antiretrovirals are working</b> <br />
<br />
Incidentally, Dr. Deckoff, who was disabled by ME/CFS for many years, has returned to work and is now practicing medicine in Hawaii. She and her daughter Ali tested positive for XMRV and have been using antiretrovirals, including raltegravir, tenofovir, and AZT, for eighteen months. Although Ali has seen some improvement, she is still quite ill.<br />
<br />
On the other hand, Dr. Deckoff's response to the antiretrovirals has been remarkable. See her blog post:<br />
<br />
<a href="http://treatingxmrv.blogspot.com/2011/06/once-more-unto-breach-dear-friends.html?spref=fb">Once more unto the breach, dear friends</a>Alisonnichttp://www.blogger.com/profile/08072703204217023287noreply@blogger.com1tag:blogger.com,1999:blog-1499214413087992095.post-88800343082645251632011-06-13T06:48:00.000-07:002011-06-13T07:19:31.022-07:00XMRV/ME/CFS and InflammationTwo studies regarding inflammation in people with ME/CFS have been published recently.<br />
<br />
The Whittemere Peterson Institute publishe<span style="font-size: small;">d</span><span style="font-size: small;"> <a href="http://iv.iiarjournals.org/content/25/3/307.long#ack-1">Xenotropic Murine Leukemia Virus-related Virus-associated Chronic Fatigue Syndrome Reveals a Distinct Inflammatory Signature</a>, which reveals a distinct cytokine and chemokine signature in people with XMRV-associated CFS and suggests a possible diagnostic procedure for the disease. (Thanks to Dr. Jamie Deckoff-Jones for publishing a link to this study in <a href="http://treatingxmrv.blogspot.com/2011/06/who-are-our-friends.html">her blog</a>.)</span><br />
<br />
<span style="font-size: small;">Also, a study,</span><a href="http://www.research1st.com/2011/06/02/exercise-challenge-reveals-potential-cfs-biomarkers/"> Exercise Challenge Reveals Potential CFS Biomarkers</a>, explores biological responses to mild exercise in people with CFS. This study, by <span style="font-size: small;">a University of Utah group affiliated with the CFIDS Association of America, </span>supports the personal observations of many of us with ME/CFS who find that even very mild exertion can cause a significant relapse and/or severe exacerbation of symptoms.<br />
<br />
The study also found that the use of anticonvulsants can have a beneficial effect, reducing this post-exertional relapse.Alisonnichttp://www.blogger.com/profile/08072703204217023287noreply@blogger.com0tag:blogger.com,1999:blog-1499214413087992095.post-62503517159242134072011-02-25T06:59:00.000-08:002012-02-06T07:57:01.718-08:00Dr. Deckoff and the new WPI clinic<a href="http://treatingxmrv.blogspot.com/">Dr. Jamie Deckoff-Jones</a> is now working for the <a href="http://www.wpinstitute.org/">Whittemore Peterson Institute</a>, hiring staff for their <a href="http://treatingxmrv.blogspot.com/2011/01/back-to-work.html">new clinic</a>, which will be treating neuro-immune diseases, including CFS/ME, Lyme, and autism - and feeding what they learn back to the WPI's research center.<br />
<a name='more'></a><br />
The institute also plans internet discussions and face-to-face conferences with practitioners all over the world. This connection between research and a large and well-coordinated body of clinical experience has been missing in the world of neuro-immune disorders, and, as Dr. Deckoff explains, could lead to crucial breakthoughs in understanding and treating these diseases.<br />
<br />
Cort Johnson of <a href="http://forums.aboutmecfs.org/">Phoenix Rising</a> interviews Dr. Deckoff here:<br />
<br />
<a href="http://forums.aboutmecfs.org/content.php?361-Dr.-Deckoff-Jones-Talks-on-the-WPI-clinic-treatment-CFS-cfids">The Patient Side: WPI Clinical Director Dr. Deckoff-Jones Talks</a><br />
<br />
The fact that the WPI plans to treat Lyme patients supports my belief that Lyme disease, like CFS/ME, is actually caused by XMRV or a related retrovirus, which impairs the immune system in such a way that Lyme and/or other tick-borne pathogens as well as herpes viruses such as Epstein-Barr (mono), CMV, and HHV-6 can thrive. This seems to be the operating theory at WPI as well.<br />
<br />
The WPI is at the forefront of research on these illnesses. While much of the medical community and the government-run and -funded research bodies have their heads in the sand, the people at WPI are fired up and working hard to understand the underlying causes and mechanisms of these diseases and find effective treatments.<br />
<br />
Right now, these people are my best and only hope for one day being able to have a life again.Alisonnichttp://www.blogger.com/profile/08072703204217023287noreply@blogger.com0tag:blogger.com,1999:blog-1499214413087992095.post-17894282356452214452011-01-10T08:57:00.000-08:002012-02-06T07:56:01.879-08:00The Human CostMillions of people suffer from the ghastly disease known as "Chronic Fatigue Syndrome." Some can still function, with limitations, but for others life has been reduced to a dreary, pain-filled hell unimaginable to those who are not touched by the disease.<br />
<br />
One woman has to be taken to the bathroom in a wheelchair. Another, having developed a brutal sensitivity to light, must navigate her home by touch, lights out, windows sealed against the faintest ray from the sun. Yet another spent the best part of a year living on her bathroom floor, unable to crawl back to her bed.<br />
<br />
While the government agencies who are supposed to be helping these people continue to dance away from their responsibilities, thousands live with equally devastating horrors. Some are homebound, others bedbound; some are unable to read, others unable to speak; many require round the clock care. Yet these people - isolated, in agony, lives in ruins - still cling to hope.<br />
<br />
For the most part, because they are too ill to participate in life in any meaningful way, these people are invisible.<br />
<br />
Here are some of their stories.<br />
<a name='more'></a><ul><li><a href="http://www.theexitproject.org/">The Exit Project</a> - Wheelchairs are the good news.</li>
<li><a href="http://thecornerroom.tumblr.com/">The Corner Room</a> - Life <a href="http://thecornerroom.tumblr.com/post/2147448087/in-the-dark">in the dark.</a> </li>
<li><a href="http://peggymunson.blogspot.com/">Peggy Munson</a> - Author of <span style="font-style: italic;">Pathogenesis</span> and <span style="font-style: italic;">Stricken</span>. </li>
<ul><li><a href="http://peggymunson.blogspot.com/2009/12/dear-friends-as-some-of-you-know-my.html">Dear friends</a> - Life on the bathroom floor.</li>
<li><a href="http://peggymunson.blogspot.com/2007/03/i-have-to-live-life-immaculately-free.html">Who is that Bubble Girl?</a> </li>
<li><a href="http://peggymunson.blogspot.com/2009/10/fly-away-to-xand-ado-or-where-is-elaine.html">Fly Away to XAND-ado, or Where Is Elaine DeFreitas?</a></li>
</ul><li>Mary Schweitzer - A tenured professor at Villanova University.</li>
<ul><li><a href="http://www.cfids-me.org/mystory10.html">My Story</a></li>
<li><a href="http://slightlyalive.blogspot.com/">Slightly Alive</a> - Testimony to the Chronic Fatigue Syndrome Advisory Committee of the<br />
Department of Health and Human Services.</li>
<li><a href="http://www.cfids-me.org/marys/essays.html">Essays</a> - Essays, experiences, and more testimony.</li>
</ul><li>Lauren Hillenbrand - Author of <i>Seabiscuit </i>and <i>Unbroken.</i><ul><li><a href="http://www.cfids-cab.org/MESA/Hillenbrand.html">A Sudden Illness</a></li>
<li><a href="http://www.washingtonpost.com/wp-dyn/content/article/2010/11/28/AR2010112803533.html">Washington Post</a> - In the final paragraphs of Page 3, Lauren speaks for me.</li>
<li><a href="http://www.newsweek.com/content/newsweek/2010/11/11/can-laura-hillenbrand-top-seabiscuit.html">Newsweek</a></li>
<li><a href="http://www.usatoday.com/life/books/news/2010-11-10-hillenbrand10_CV_N.htm">USA Today</a></li>
</ul></li>
<li><a href="http://www.cfids.org/archives/1998/pre-1999-article03.asp">Michelle Akers</a> - World-class soccer player.</li>
<li><a href="http://www.sophiaandme.org.uk/sophia%20&%20m.e.%20her%20story.html">Sophia Mirza</a> - Unable to tolerate light, sound, food, or water, Sophia died after being "sectioned" into a mental hospital by the British National Health Service, who claimed she was mentally ill. Autopsy showed “unequivocal inflammatory changes affecting the ... dorsal root ganglia ... The changes of dorsal root ganglionitis seen in 75% of Sophia‘s spinal cord were very similar to that seen during active infection by herpes viruses (such as shingles).”</li>
</ul>These horrifying stories make me grateful that - although I can no longer work, socialize, or even shop for my own groceries - I am still able to make my own meals, get myself to the bathroom, and occasionally get out to go to a medical appointment.<br />
<br />
But these stories also frighten me, because they foretell what is likely in store for me if effective treatments are not found soon.Alisonnichttp://www.blogger.com/profile/08072703204217023287noreply@blogger.com4tag:blogger.com,1999:blog-1499214413087992095.post-45431187313795791772011-01-08T09:27:00.001-08:002011-01-18T09:38:32.514-08:00XMRV treatment in 2011?<div style="margin: 0px;"><div style="margin: 0px;">In an <a href="http://www.youtube.com/watch?v=vfJV2bECb_M">interview with Nevada Newsmakers</a> on December 22, 2010, Dr. Judy Mikovits says that "This is really a great time of hope ... we are understanding why the virus hurts the immune system ... what's going wrong to make you sick. ... We expect treatments next year." </div></div><div style="margin: 0px;"><div style="margin: 0px;"><br />
</div></div><div style="margin: 0px;"><div style="margin: 0px;">This is right at the end of the video, starting at about 12:15.<br />
<br />
<u>Update</u>: In December, at the <a href="http://forums.aboutmecfs.org/content.php?309-Australian-CFS-Science-Symposium-Overview-by-Rosamund-Vallings">International Science Symposium on ME/CFS</a> in Queensland, Austrailia, findings of brain and spinal cord damage and immune system derangement dominated the reports. Promising research into viral infection and exercise intolerance was also discussed.</div></div>Alisonnichttp://www.blogger.com/profile/08072703204217023287noreply@blogger.com0tag:blogger.com,1999:blog-1499214413087992095.post-5731167250355925142011-01-08T08:44:00.000-08:002012-02-06T07:51:54.130-08:00Jamie Deckoff-Jones on contamination, autism, and an epidemiological disaster<a href="http://treatingxmrv.blogspot.com/">Jamie Deckoff-Jones, MD</a>, is a physician who is XMRV positive and suffers from ME/CFS. She maintains a blog about the disease and her own progress with HIV retroviral treatments.<br />
<br />
In her post on December 22, 2010, <a href="http://treatingxmrv.blogspot.com/2010/12/returning-to-function.html">Returning to Function</a>, Dr. Deckoff responds to the papers released two days earlier showing that mouse DNA contamination can distort PCR test results - and the ludicrous claim that this proves XMRV does not cause CFS. She also discusses a possible relationship between XMRV and autism.<br />
<a name='more'></a><br />
Later in her post, Dr. Deckoff touches on the epidemiological investigative and research disaster that has led to the spread of what now appears to be a very dangerous virus. Had proper investigation and research been done when <a href="http://oslersweb.com/newsletter.htm">"Chronic Fatigue Syndrome" epidemics surfaced</a> in Incline Village, Nevada, and Lyndonville, New York, over 25 years ago, this ghastly disease might have been confined to a relatively small number of people.<br />
<br />
Instead, millions are infected, millions are suffering, millions have had their lives destroyed. Who knows how many thousands have died? How many more will be infected before the mechanisms of transmission are understood - and methods of prevention devised?<br />
<br />
Dr. Deckoff's blog post is the source of the new quote in this blog's header, above. Thank you, Jamie, for your eloquence, your passion, and your commitment to science and truth.<br />
<br />
<b>Update: Contamination In the News</b><br />
<br />
More on the PCR/mouse DNA contamination red herring:<br />
<ul><li><a href="http://www.wpinstitute.org/news/docs/WPIResponseToRetrovirology122010.pdf">Whittemore-Peterson Institute Statement Regarding Retrovirology Article</a></li>
<li><a href="http://www.wpinstitute.org/news/docs/WPI_XMRV_010111.pdf">XMRV: A Human Retrovirus with Unknown Pathogenic Potential, Not a Lab Contaminant</a></li>
<li><a href="http://blogs.wsj.com/health/2010/12/20/xmrv-raising-the-issue-of-contamination/">The Wall Street Journal</a></li>
<li><a href="http://www.nytimes.com/2011/01/04/health/04fatigue.html?_r=1">The New York Times</a></li>
<li><a href="http://treatingxmrv.blogspot.com/2011/01/letter-from-annette-whittemore.html">Letter from Annette Whittemore</a></li>
<li><a href="http://www.virology.ws/2010/12/22/xmrv-and-cfs-its-not-the-end/">XMRV and CFS - It's not the end</a> - a well-known virologist retracts his initial knee-jerk reaction.</li>
</ul>Alisonnichttp://www.blogger.com/profile/08072703204217023287noreply@blogger.com0tag:blogger.com,1999:blog-1499214413087992095.post-20056287649975613362011-01-06T11:35:00.000-08:002011-01-08T12:40:30.619-08:00Macaque monkeys and XMRVPossibly the most significant CFS-related research published last year was done by a group connected with Emory University, Abbot Labs, and the Cleveland Clinic.<br />
<br />
Rhesus macaque monkeys were injected with XMRV, and then their blood and organs were tested to track the progression of the infection.<br />
<br />
After a few weeks, XMRV was almost totally gone from the blood. But the infection had spread to many of the organs, including the lungs, spleen, liver, lymphatic system, bronchial passages, gut, and the sex organs.<br />
<br />
When the monkeys were later injected with a bolus of foreign peptides (which mimics an acute infection, an immunization, or an acute mold exposure) there was a huge reactivation of infectious XMRV. Stress and certain hormones also appear to be significant reactivators.<br />
<br />
This study is quite consistent with my observations of the behavior of my own illness over the past 16 years. It also sheds new light on several recent studies which failed to find XMRV in the blood of patients with XRMV.<br />
<br />
I believe this study should provide new impetus and direction for future XMRV and CFS-related research.<br />
<ul><li><a href="http://www.retroconference.org/2010/Abstracts/39393.htm">XMRV: Examination of Viral Kinetics, Tissue Tropism, and Serological Markers of Infection</a> - The study abstract.</li>
<li><a href="http://forums.aboutmecfs.org/content.php?229-Dr-Cheney-on-the-XMRV-International-Workshop">XMRV Infection in Primates</a> - Dr. Paul Cheney's detailed discussion of the study.</li>
<li><a href="http://www.cfscentral.com/2010/10/monkey-business.html">Monkey Business</a> - Political cartoons commenting on the study.</li>
<li><a href="http://www.cfscentral.com/2010/10/more-monkeys.html">More Monkeys</a> - More politics.</li>
</ul>Alisonnichttp://www.blogger.com/profile/08072703204217023287noreply@blogger.com5tag:blogger.com,1999:blog-1499214413087992095.post-52748061864574519492010-08-30T08:49:00.000-07:002010-08-30T14:06:58.546-07:00More Evidence: Retroviruses Cause ME/CFSA study released last week by the NIH, Harvard Medical School, and the FDA (!) found murine leukemia retroviruses (MLV's) similar to XMRV in 68% of people with ME/CFS and 7% without. This validates the Mikovits XMRV study published last fall. More info:<br />
<blockquote><a href="http://online.wsj.com/article/SB10001424052748703846604575447744076968322.html?mod=WSJ_hpp_LEFTTopStories">Wall Street Journal article</a><br />
<a href="http://www.nytimes.com/2010/08/24/health/research/24fatigue.html?_r=2&scp=1&sq=tuller&st=cse">New York Times article</a></blockquote><br />
The study was submitted to the National Acadamy of Sciences by Dr. Harvey Alter, who is apparently a big cheese in research circles, and I believe it's going to be hard for the naysayers to ignore this. I am hopeful that this will lead to some clinical trials of anti-retrovirals on ME/CFS patients soon, and perhaps effective treatments for us someday soon.<br />
<br />
<i>Update: </i>A <a href="http://www.forums.aboutmecfs.org/showthread.php?7124-Meirleir-confirms-XMRV-findings-in-Europe/page2&highlight=gamma">study by Dr. Kenny de Meirleir</a> in Belgium is about to released. This study also found retroviruses in ME/CFS patients. <br />
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<b>One Doctor's Success using Anti-Retrovirals - On Herself</b><br />
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Meanwhile, a physician in Santa Fe, <span class="post-author vcard"><span class="fn">Jamie Deckoff-Jones</span></span>, and her daughter haven't been waiting for the drug companies and the government to get around to funding trials. They've already discovered that HIV drugs can help at least some people with ME/CFS.<br />
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Both Dr. Deckoff and her daughter have ME/CFS and both tested positive for XMRV. They have been trying the anti-retroviral drugs that have been found to stop XMRV in vitro (AZT, raltegravir, and tenofovir) and both are hugely improved.<br />
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A year ago both Dr. Deckoff and her daughter were able to spend only a few minutes per day out of bed. Last week Dr. Deckoff traveled to Reno for an ME/CFS conference, and her daughter has enrolled in community college.<br />
<br />
Details on Dr. Deckoff's blog, here:<br />
<blockquote><a href="http://treatingxmrv.blogspot.com/2010/05/update-on-antiretroviral-treatment.html">May 2010 - details on antiretroviral treatment regime</a><br />
<a href="http://treatingxmrv.blogspot.com/2010/08/haart-x-5-12-months.html">August 2010 - dramatic improvement!</a></blockquote><br />
This, along with the new Alter study, is possibly the most hopeful thing I have read about ME/CFS since the Mikovits XMRV study last fall. However, other XMRV-positive people who have tried the same drugs have not had the same improvement - but they weren't being guided by a physician who has the illness herself. Dr. Deckoff has had to tinker with dosages and has gone on and off some of the drugs over time to find the right combination and progression. It's apparently pretty tricky to deal with this virus.<br />
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Dr. Deckoff's blog is full of more information about other treatments for ME/CFS and other possibly related illnesses such as Lyme. Her perspective, as a physician who has ME/CFS herself, is invaluable. She tried Lyme treatments for years herself; her experience and conclusions make me very glad I didn't do antibiotics after I tested positive for Lyme and Bartonella last fall.<br />
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<b>Yet Another Name Idea</b><br />
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Will there ever be an appropriate name for this illness? One that's less misleading, less damaging - and less insulting - than the CDC's loathesome propaganda invention?<br />
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Dr. Joe Burrascano, well known authority on Lyme disease, will be proposing "HGRV" (Human Gamma Retro Virus) for the name of the virus, and "HGRAD" (Human Gamma Retrovirus Associated Disease) for the name of the illness when he attends the upcoming NIH retroviral conference this September. <a href="http://www.forums.aboutmecfs.org/showthread.php?7001-News-from-WPI-symposium-Name-change-to-be-proposed-for-XMRV&highlight=burrascano">Read more</a><br />
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<b>Is it in the Blood Supply?</b><br />
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Australia, New Zealand, Canada, and <a href="http://www.forums.aboutmecfs.org/showthread.php?7191-NEW%21-UK-DEPT.-OF-HEALTH-to-BAN-ALL-ME-CFS-BLOOD-DONATIONS-from-NOV-2010-%28from-MEA%29%21">now the UK</a> have banned people with ME/CFS from donating blood. Why hasn't the US done the same? Dr. Louis Katz, "a specialist in infectious diseases and a prominent figure in national blood banking organizations," <a href="http://www.forums.aboutmecfs.org/content.php?206-Dr-Katz-at-the-Mic-the-CAA-Webinar-on-XMRV-and-Blood-Safety">explains the current situation</a>. Watch his <a href="http://www.youtube.com/watch?v=ex6iS_2RqiY">presentation</a> to the CFIDS Association of America.<br />
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<b>Coverup?</b><br />
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And finally, here is a <a href="http://www.youtube.com/watch?v=KGFVXacPuho&feature=related">documentary </a>- made seventeen years ago! - that shows clearly how radically ME/CFS differs from chronic fatigue, and how the CDC covered this up. I've only managed to watch the first two parts so far, and they made me want to cry.Alisonnichttp://www.blogger.com/profile/08072703204217023287noreply@blogger.com1tag:blogger.com,1999:blog-1499214413087992095.post-48574123912386352412010-08-13T05:44:00.000-07:002010-08-19T10:08:27.563-07:00Cardio and Blood Volume Links<span style="font-style: italic;">Quick links to research and treatment related to low blood volume and cardiac dysfunction in people with CFS/ME:</span><br />
<blockquote>Dr. Martin Lerner:<br />
<blockquote><a href="http://www.treatmentcenterforcfs.com/FAQ/index.html">Frequently Asked Questions</a>: Cardiac abnormalities in CFS patients; diagnosis; treatment of EBV, HCMV and HHV6; recent research.<br />
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<a href="http://aboutmecfs.org/Int/Lerner.aspx">Dr. Lerner on his Long Lerm Antiviral Treatment Study</a>: The effectiveness of long term antiviral therapy on CFS and orthostatic intolerance in 142 patients seen more than 7000 times over six years.<br />
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<a href="http://www.dovepress.com/articles.php?article_id=4493">Subset-directed antiviral treatment of 142 herpesvirus patients with chronic fatigue syndrome</a></blockquote><br />
David H. P. Streeten, MB, DPhil, FRCP, FACP and David S. Bell, MD, FAAP:<span style="text-decoration: underline;"><br />
</span><a href="http://www.ncf-net.org/library/Bell-StreetenJCFS1998.htm">Circulating Blood Volume in Chronic Fatigue Syndrome</a><br />
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Dr. Jacob Teitelbaum:<span style="text-decoration: underline;"><br />
</span><a href="http://www.endfatigue.com/health_articles_c/Cfs_fm-treating_low_blood_volume_and_heart.html">Treating Low Blood Volume and Decreased Heart Function in CFS</a></blockquote><br />
Note that the above papers and articles are just the tip of the iceberg; there is a great deal of information available on studies and other evidence supporting the connection between CFS, low blood volume, and cardiomyopathy.<br />
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Dr. Judy Mikovits, lead researcher in the recent study linking CFS/ME with the XMRV retrovirus, believes that XMRV impairs the immune system in such a way that other pathogens, such as EBV, HCMV, and HHV6, can thrive.<br />
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Until this enabling relationship is proven and effective treatments for XMRV are found, Dr. Lerner's antiviral treatment makes a great deal of sense, especially given his well-documented success.<br />
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<i>Update: </i>Read this <a href="http://www.davidsbell.com/LynNewsV7N2.htm">newsletter from Dr. David Bell</a>, who treated CFS patients for over 25 years. Dr. Bell has some interesting insights into the XMRV research to date as well as the political context surrounding CFS-related research.<br />
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Dr. Bell also lists a number of readily available lab tests which he believes can be used to detect and/or confirm the presence of CFS in patients, including echocardiogram with cardiac output <i>while standing</i> and IVRT interrogation with oxygen.<br />
<br />
<span style="font-style: italic;">Quick link to this page: </span><a href="http://tinyurl.com/cfs-cardio" style="font-style: italic;">http://tinyurl.com/cfs-cardio</a>Alisonnichttp://www.blogger.com/profile/08072703204217023287noreply@blogger.com0tag:blogger.com,1999:blog-1499214413087992095.post-71915619428545103392010-02-05T06:49:00.000-08:002010-02-05T08:42:24.221-08:00Cause of DeathCFS patients who died of cancer, heart failure, or suicide had much shorter lifespans than the general population, according to a 2004 study:<br /><br /><span>Average age of <span style="font-weight: bold;">cancer </span>deaths: </span><br /><ul><li><span>ME/CFS – 47.8 years</span></li><li><span>Avg population – 72.0 </span><span>years</span></li><li><span>Difference – <span style="font-weight: bold;">24.2</span> </span><span>years</span></li></ul><br /><span>Average age of <span style="font-weight: bold;">heart failure</span> deaths: </span><br /><ul><li><span>ME/CFS – 58.7 </span><span>years</span></li><li><span>Avg population – 83.1 </span><span>years</span></li><li><span>Difference – <span style="font-weight: bold;">24.4</span> </span><span>years</span></li></ul><br /><span>Average age of <span style="font-weight: bold;">suicide </span>deaths: </span><br /><ul><li><span>ME/CFS – 39.5 </span><span>years</span></li><li><span>Avg population – 48.0 </span><span>years</span></li><li><span>Difference – <span style="font-weight: bold;">8.5</span> </span><span>years</span></li></ul><br />The dramatic results of this preliminary study begs the question: why hasn't more research been done in this area?<br /><br />Imagine the impact on the potential funding for research into ME/CFIDS/XMRV if a more comprehensive study produced the same results - and got the kind of coverage in the media that the WPI XMRV study did.<br /><br />More information:<br /><ul><li><a href="http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/Causes%20of%20Death%20-%20CFS%20Patients.pdf">Causes of Death Among Patients With Chronic Fatigue Syndrome, Jason et al</a> - The original study. Also <a href="http://www.name-us.org/ResearchPages/ResearchArticlesAbstracts/JasonArticles/Jason2005Mortalityfull.pdf">here</a>. See also <a href="http://condor.depaul.edu/%7Eljason/cfs/">Dr. Jason's web site</a>.</li><li><a href="http://digdeep1.wordpress.com/2010/01/08/causes-of-death-among-patients-with-chronic-fatigue-syndrome/">Causes of Death among Patients with Chronic Fatigue Syndrome</a> - A Dig Deep News blog post. Summary and links.</li><li><a href="http://forums.aboutmecfs.org/showthread.php?2237-Cause-of-Death-among-Patients-with-Chronic-Fatigue-Syndrome/page2">Cause of Death among Patients with Chronic Fatigue Syndrome</a> - Phoenix Rising forum thread.</li></ul>Alisonnichttp://www.blogger.com/profile/08072703204217023287noreply@blogger.com2tag:blogger.com,1999:blog-1499214413087992095.post-61953739844778570802009-10-31T09:45:00.000-07:002010-02-05T08:59:39.589-08:00Horror Statistics from the US GovernmentGovernment statistics show an appalling neglect of ME/CFIDS research which is costing the US economy <span style="font-style: italic;">billions</span>. From the <a href="http://www.cdc.gov/">CDC </a>and <a href="http://report.nih.gov/rcdc/categories/">NIH web sites</a>:<br /><ul><li> Number of people in the US with HIV or AIDS, diagnosed or undiagnosed: <span style="font-weight: bold;">1.1 million</span></li><li> Number of new Lyme cases reported in the US between 1990 and 2008: <span style="font-weight: bold;">328,128</span></li><li> Number of people in the US with CFS: <span style="font-weight: bold;">1+ million</span> (<span style="font-weight: bold;">tens of millions more</span> have "similar fatiguing illnesses" but don't meet the CDC's strict "research" criteria)</li></ul> <ul><li> NIH money to be spent on HIV/AIDS research in 2010: <span style="font-weight: bold;">$3 billion</span></li><li> NIH money to be spent on Lyme disease research in 2010: <span style="font-weight: bold;">$23 million</span></li><li> NIH money to be spent on CFS research in 2010: <span style="font-weight: bold;">$3 million</span> (yes, you read that right. <i>One thousand times less</i> than HIV/AIDS!)</li></ul> <ul><li> Number of categories getting <span style="font-weight: bold;">more </span>research money than CFS: <span style="font-weight: bold;">209</span> </li><li> Number of categories getting <span style="font-weight: bold;">less </span>research money than CFS: <span style="font-weight: bold;">2</span></li></ul> And yet...<br /><br />Dr. Nancy Klimas told the <a href="http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chronic-fatigue-syndrome/">New York Times</a>:<br /><blockquote>My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.<br /><br />I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) <span style="font-style: italic; font-weight: bold;">I would rather have H.I.V.</span> <span style="font-size:78%;">[emphasis added]</span><span style="font-style: italic;"><br /></span></blockquote>I don't mean to pick on HIV/AIDS and Lyme disease. (I was recently diagnosed with Lyme disease myself.) For perspective, here are some other examples of NIH funding categories for 2010:<br /><ul><li>hay fever, <span style="font-weight: bold;">$6 million</span><br /></li><li>Tourette Syndrome, <span style="font-weight: bold;">$9 million</span><br /></li><li>Carcot-Marie-Tooth Disease, <span style="font-weight: bold;">$13 million</span><br /></li><li>homelessness, <span style="font-weight: bold;">$13 million</span><br /></li><li>methamphetamine, <span style="font-weight: bold;">$70 million</span><br /></li><li>Small Pox, <span style="font-weight: bold;">$98 million</span><br /></li><li>violence research, <span style="font-weight: bold;">$191 million</span></li><li>influenza, <span style="font-weight: bold;">$212 million</span></li><li>health effects of climate change, <span style="font-weight: bold;">$300 million</span></li><li>nanotechnology, <span style="font-weight: bold;">$326 million</span></li><li>tobacco, <span style="font-weight: bold;">$326 million</span></li><li>depression, <span style="font-weight: bold;">$418 million</span></li><li>obesity, <span style="font-weight: bold;">$687 million</span></li><li>networking and information technology R&D, <span style="font-weight: bold;">$950 million</span></li><li>drug abuse, <span style="font-weight: bold;">$1 billion</span></li><li>substance abuse, <span style="font-weight: bold;">$1.8 billion</span></li><li>health disparities, <span style="font-weight: bold;">$2.7 billion</span></li><li>bioengineering, <span style="font-weight: bold;">$2.9 billion</span></li><li>biotechnology, <span style="font-weight: bold;">$5.5 billion</span><br /></li></ul> What's wrong with this picture?<br /><br />Maybe the CDC's Dr. William Reeves can clarify things for us. Speaking about the <a href="http://cfidswatch.blogspot.com/2009/10/xmrv-retrovirus-linked-to-mecfids.html">recent discovery of the connection between ME/CFIDS and the XMRV retrovirus</a>, he told the <a href="http://www.nytimes.com/2009/10/13/health/13fatigue.html?_r=2&emc=eta1">New York Times</a>:<br /><blockquote>"If I don’t know the nature of the cases and controls, I can’t interpret the findings," Dr. Reeves said. "We and others are looking at our own specimens and trying to confirm it,” he said, adding, “If we validate it, great. <span style="font-style: italic; font-weight: bold;">My expectation is that we will not.</span><span style="font-weight: bold;">"</span> <span style="font-size:78%;">[emphasis added]</span><br /></blockquote>How's <span style="font-style: italic;">that </span>for scientific objectivity?<br /><br />Hillary Johnson, author of the book <a href="http://oslersweb.com/index.htm">Osler's Web</a>, is very familiar with the CDC's approach to "CFS." Here's a sample of <a href="http://oslersweb.com/blog.htm?post=641747">what she thinks of Dr. Reeves' opinions</a>:<br /><blockquote>Let’s start with Reeves’ comment: "Until the work is independently verified, the report represents a single pilot study."<br /><br />Blood samples from one-hundred plus patients? Over 200 healthy controls? The phylogenetic tree established? The results confirmed in THREE labs—the Cleveland Clinic, the National Cancer Institute, the WPI? Lab contaminants ruled out using three different tests? That's a <i>pilot</i> study?</blockquote>About the XMRV researchers and Bill Reeves' "surprise" that such a prestigious journal as <span style="font-style: italic;">Science </span>would publish their study, Hillary adds:<br /><blockquote>These collaborators didn’t just arrive on the scene last month from Mars; they knew going into this work <a href="http://peggymunson.blogspot.com/2009/10/fly-away-to-xand-ado-or-where-is-elaine.html">what the CDC did to Elaine DeFreitas</a> and her retrovirus finding in 1991. They understood the politics. They were aware of the agency’s multi-million dollar propaganda war on a million very sick people. They were prepared. They CDC-proofed this study. The rigor in the Mikovits-Ruscetti-Silverman paper was such that <span style="font-style: italic;">Science </span>had to take the paper.</blockquote>The <span style="font-style: italic;">privately funded</span> <a href="http://www.wpinstitute.org/patient/patient_faqs.html">Whittemore Peterson Institute</a>, which led the XMRV study, says this:<br /><blockquote><span style="font-weight: bold;">Is the government doing enough for ME/CFS?</span><br /><br />NO. The Centers for Disease Control (CDC) estimates from 1-4 million people in the U.S. have chronic fatigue syndrome (ME/CFS) and that approximately 80% of chronic fatigue syndrome (ME/CFS) cases in the U.S. are undiagnosed. The average annual costs per family, including financial losses due to unemployment, are about $25,000 a year. Overall chronic fatigue syndrome (ME/CFS) is believed to cost the US economy at least <span style="font-weight: bold;">$25 billion dollars a year</span> <span style="font-size:78%;">[emphasis added]</span> and perhaps much more. CDC studies indicate that chronic fatigue syndrome (ME/CFS) patients as a group have disability rates similar to people with multiple sclerosis, lupus, rheumatoid arthritis, heart disease and other serious diseases. Despite its prevalence, severity <span style="font-style: italic;">and high economic costs</span> <span style="font-size:78%;">[emphasis added]</span> chronic fatigue syndrome (ME/CFS) ranks near the bottom in funding of the over 200 diseases and conditions which the NIH funds.</blockquote>Twenty-five billion dollars <span style="font-style: italic;">every year?</span><br /><br />So what can we do about the US Government's monstrous and malicious neglect of the millions of people stricken with this disease, and their families - and cavalier disregard for <span style="font-style: italic;">those of us who foot the multi-billion dollar bill</span> for the loss of productivity of the people disabled by this disease and the ineffective medical care available to them?<br /><br />Wake up, Americans. Even if you don't have ME/CFIDS, even if you don't know anyone who has it, the official policies of the NIH and the CDC - their refusal to support serious efforts to understand and eradicate this disease - is having an impact on you right now. <span style="font-style: italic;">This disease is </span><span style="font-style: italic;">costing you money!</span><br /><br />Comments welcome.<br /><br /><span style="font-weight: bold;">Update:</span> In her blog, <a href="http://cfs-facts.blogspot.com/">Life as we know it</a>, Karen Campbell of <a href="http://www.cfsfacts.org/">CFS Facts</a> has posted a different perspective on some of these numbers in <a href="http://cfs-facts.blogspot.com/2008/12/nih-research-statistics-show.html">NIH Research Statistics Show Fundamental Inequality</a>. Karen lists a "research dollars per patient" for people suffering from various diseases, including ME/CFIDS. See also her blog "<a href="http://cfs-facts.blogspot.com/2009/04/letter-writing-time.html">Letter Writing Time!</a>" and <a href="http://health.groups.yahoo.com/group/CFS_Facts/message/22090">this forum post</a>.<br /><br /><span style="font-style: italic;">Thanks to Hillary Johnson and her blog post about </span><a style="font-style: italic;" href="http://oslersweb.com/blog.htm?post=631941">the NIH's nifty new search engine</a><span style="font-style: italic;">, without which I wouldn't have discovered these horrifying statistics.<br /><br />Thanks to Peggy Munson and her blog post <a href="http://peggymunson.blogspot.com/2009/10/fly-away-to-xand-ado-or-where-is-elaine.html">Fly Away to XAND-ado, or Where Is Elaine DeFreitas?</a> for inspiration and background material for this post.<br /></span>Alisonnichttp://www.blogger.com/profile/08072703204217023287noreply@blogger.com13tag:blogger.com,1999:blog-1499214413087992095.post-59763718485340856212009-10-11T11:40:00.000-07:002010-02-05T08:16:13.459-08:00Naming the DiseaseWhat's in a name? In this case, a whole lot of pain.<br /><br />The disease in question has had many names over the years, from the insulting "yuppie flu" to the much more accurately descriptive "chronic mono" or "chronic Epstein-Barr Virus" or "post-viral syndrome."<br /><br />The term "Myalgic Encephalomyelitis," or M.E., was in widespread use throughout the world until the US agency the CDC decided to promote the spread of disinformation and misunderstanding - and discredit both victims and researchers - with the appallingly misleading name, "chronic fatigue syndrome," or CFS.<br /><br />Desperate victims dreamed up the acronym CFIDS, for "Chronic Fatigue and Immune Dysfunction Syndrome," to try to add some actual useful description to the CDC's loathsome misnomer, but that term never really caught on among either the general public or medical and health care professionals, who for the most part to this day persist in referring to this devastating disease as "chronic fatigue."<br /><br />More recently, people suffering from the disease have begun to use a combination of acronyms, such as ME/CFIDS or CFS/ME/FM (for the related illness Fibromyalgia), but I feel this really only makes ourselves feel a little better; nobody else seems to get it. Many other names have also been used, but tragically the "chronic fatigue" misnomer is the one that stuck.<br /><br />Now <a href="http://www.oslersweb.com/blog.htm?post=638469">Hillary Johnson</a> says:<br /><blockquote>The real scientists have arrived and they'll be studying XMRV-associated neuro-immune disease, a.k.a., XAND.<br /><br />The name ["chronic fatigue syndrome"] ginned up [by the CDC] in Atlanta in 1988 to make sure disability insurers would not be required to pay out on disability policies and the public would assume the malady was a new category of mental illness? One can imagine, or simply hope, that the phrase is about to be jettisoned into outer space where one can fantasize it entering the band of space trash circling the earth. For months, the team at <a href="http://www.wpinstitute.org/">WPI </a>has been playing around with names. In lighter moments, their favorite became “I.T.V.S.,” the acronym for, “It’s the Virus, Stupid.”</blockquote>So should I rename this blog "XAND Watch" or "ITVS Campaign"? Or maybe "XMRV Hunter"? How about just "Antidote for Stupid"?<br /><br />Let's hope somebody comes up with a more catchy - and compelling - name soon.Alisonnichttp://www.blogger.com/profile/08072703204217023287noreply@blogger.com1tag:blogger.com,1999:blog-1499214413087992095.post-72773621727565934182009-10-08T16:36:00.000-07:002010-02-05T08:58:12.275-08:00XMRV retrovirus linked to ME/CFIDS<a style="" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://www.cancer.gov/images/documents/7ff6b8c8-3230-4ed9-8645-2687a4ea2add/cfsXMRVimage.jpg"><img style="margin: 0pt 0pt 10px 10px; float: right; cursor: pointer; width: 260px; height: 377px;" src="http://www.cancer.gov/images/documents/7ff6b8c8-3230-4ed9-8645-2687a4ea2add/cfsXMRVimage.jpg" alt="" border="0" /></a>A new study links the XMRV retrovirus to "CFS." Could this be the cause?<br /><br />A comprehensive study by a consortium including the Whittemore Peterson Institute, the NIH's National Cancer Institute, and The Lerner Research Institute of the Cleveland Clinic Foundation was announced today. This study demonstrates a strong association between a mouse leukemia virus, XMRV, and "Chronic Fatigue Syndrome," better known as ME/CFIDS.<br /><br />Since the NIH is involved (through their cancer research arm), a lot of people who normally dismiss the illness as a somatisation disorder (i.e. just another hysterical psychological trip) are taking the findings seriously.<br /><br />Even <a href="http://oslersweb.com/work1.htm">CFS arch-villian William Reeves</a>, the enemy of everyone who suffers from this illness, claims he's already got his little elves at the CDC working on replicating the study. Of course, based on past history, more likely they are industriously trying to <span style="font-style: italic;">not </span>replicate it.<br /><br />Update: Read these commentaries on this landmark announcement:<br /><ul><li><a href="http://peggymunson.blogspot.com/2009/10/mecfs-and-retroviral-elephant-mecfs-and.html?spref=fb">Peggy's Blog</a> - Powerful and moving essay by Peggy Munson about ME/XMRV, her personal experiences with the disease, and a broad look at the big picture. A must read if you or someone you care about has been diagnosed with ME, "CFIDS," "Chronic Fatigue Syndrome," Fibromyalgia, or MCS.<br /></li><li><a href="http://www.oslersweb.com/blog.htm?post=638469">Blog: Osler's Web</a> - Hillary Johnson's triumphant declaration of victory over the dark forces in the US government's "health" agencies, the CDC and NIH, whose criminal actions prolonged the suffering of millions of victims of this terrible disease and resulted in countless unnecessary deaths.</li></ul>News articles about the announcement:<br /><ul><li><a href="http://www.independent.co.uk/news/science/has-science-found-the-cause-of-me-1799944.html">The Independent: Has Science Found the Cause of ME?</a> - "...the senior author of the study, Judy Mikovits ... said further blood tests have revealed that more than 95 per cent of patients with the syndrome have antibodies to the virus – indicating they have been infected with XMRV... 'With those numbers, I would say, yes we've found the cause of chronic fatigue syndrome.'" </li><li><span><a href="http://www.dancewithshadows.com/pillscribe/xmrv-virus-linked-to-chronic-fatigue-says-study/">Dance with Shadows: XMRV Virus Linked to Chronic Fatigue, Says Study</a> - "'Just like you cannot have AIDS without HIV, I believe you won’t be able to find a case of chronic-fatigue syndrome without XMRV,' ... Dr Mikovits said."</span></li><li><a href="http://www.nature.com/news/2009/091008/full/news.2009.983.html">Nature Magazine: Virus Linked to Chronic Fatigue Syndrome</a> - "'I can't wait to be able to tell my patients,' says Mikovits... 'It's going to knock their socks off. They've had such a stigma. People have just assumed they were just complainers who didn't handle stress well.'" Nature Magazine rarely reports on CFIDS, so this study must have really impressed them.</li><li><a href="http://www.reuters.com/article/latestCrisis/idUSN08539703?rpc=60">Reuters: Study Isolates Virus in Chronic Fatigue Sufferers</a> - "'You can imagine a number of combination therapies that could be quite effective and could at least be used in clinical trials right away,' Mikovits said in a telephone interview."</li><li><a href="http://www.nytimes.com/2009/10/09/health/research/09virus.html">NY Times: Virus Is Found in Many With Chronic Fatigue Syndrome</a> - "'I think this establishes what had always been considered a psychiatric disease as an infectious disease,' said Dr. Mikovits. ... [She] said she and her colleagues were drawing up plans to test antiretroviral drugs — some of the same ones used to treat <a href="http://health.nytimes.com/health/guides/disease/hiv-infection/overview.html?inline=nyt-classifier" title="In-depth reference and news articles about HIV infection.">HIV infection</a> — to see whether they could help patients with chronic fatigue."</li><li><a href="http://chronic-fatigue-syndrome.suite101.com/article.cfm/cfsme_and_retroviruses">Suite 101.com: New XMRV Study Not the First to Find a Retroviral Link</a> - "The study group of Elaine DeFreitas reported a link between CFS/ME and retroviruses back in 1991." and "Immunovirologist Michael Holmes described retroviral activity in cells of CFS/ME patients as early as 1986." <a href="http://oslersweb.com/work1.htm">Hillary Johnson</a> documents the CDC's vicious attack on DeFrietas, which eventually forced her to leave the field.<br /></li></ul><a href="http://www.peggymunson.com/">Peggy Munson</a> notes: <span style="font-style: italic;">Please ignore the news idiots who use the term "chronic fatigue" instead of ME/CFIDS. Idiopathic chronic fatigue affects some 25 percent of the population and does not resemble ME/CFIDS at all. Hopefully the new research will help the media understand that that is like calling AIDS "chronic weight loss." The preferred term for patients is still ME, or myalgic encephalomyelitis. </span><br /><br />Sadly, it's not just the news idiots. I've seen dozens of health care providers - from MD's to naturopaths to acupuncturists to energy healers - in the fifteen years since I was diagnosed with "CFS," and <span style="font-style: italic;">I can't think of a single one</span> that didn't use the term "chronic fatigue" when referring to my disease.<br /><br /><a href="http://peggymunson.blogspot.com/2009/10/mecfs-and-retroviral-elephant-mecfs-and.html?spref=fb">Peggy's Blog</a> has links to many more articles.<br /><br />Official information:<br /><ul><li><a href="http://www.cfids.org/temp/whittemore-press-release-10-09.pdf">Press Release: Consortium of Researchers Discover Retroviral Link to Chronic Fatigue Syndrome</a> - The official press release in PDF form.</li><li><a href="http://my.clevelandclinic.org/news/2009/research_showing_potential_retroviral_link_between_xmrv_and_cfs.aspx">Research Shows a Potential Retroviral Link Between XMRV and Chronic Fatigue Syndrome</a> - The Cleveland Clinic's official press release.</li><li><span class="page-title"><a href="http://www.cancer.gov/newscenter/pressreleases/CFSxmrv">Consortium of Researchers Discover Retroviral Link to Chronic Fatigue Syndrome</a> - The National Cancer Institute's official announcement includes the electron micrograph of the XMRV retrovirus which is displayed at the top of this post.<br /></span></li><li><a href="http://www.sciencemag.org/cgi/content/abstract/1179052">Science Magazine: Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome</a> - Abstract from the study.</li><li><a href="http://www.wpinstitute.org/">The Whittemore Peterson Institute</a> - The official site of the research facility that led the study.</li><li><a href="http://my.clevelandclinic.org/">The Cleveland Clinic</a>'s <a href="http://www.lerner.ccf.org/">Lerner Research Institute</a> - Another research facility which participated in the study.<br /></li></ul>To put this announcement in perspective, please read Hillary Johnson's speech <a href="http://oslersweb.com/work1.htm">"The Why"</a> and then ponder on how much sooner this discovery might have been made - and the waste of innumerable years and countless lives avoided - had the people at the US Government's official agency responsible for investigating this disease actually done their jobs instead of undermining research and aggressively attempting to discredit the victims of the illness and people who believed them.<br /><br />You might also want to review the discussion of Dr. Lerner's research into viral treatments of this illness in the <a href="http://cfidswatch.blogspot.com/2009/07/emerging-understanding.html">July 21</a> entry of this blog.Alisonnichttp://www.blogger.com/profile/08072703204217023287noreply@blogger.com0tag:blogger.com,1999:blog-1499214413087992095.post-55985501924291847012009-09-08T06:22:00.000-07:002010-02-05T08:25:40.151-08:00Advice for Friends and Physicians; More on de Merlier, CheneyDo you have a friend or relative who has CFIDS? How should you talk about their illness?<br /><br />Like almost everyone who has CFIDS, I've been subjected to comments which are, at best, insensitive and thoughtless. Coming from physicians or other health care providers, such comments can be devastating - and can seriously undermine my confidence in that provider's ability to diagnose or treat me effectively. Here's some advice if you know someone who has CFIDS:<br /><br /><a href="http://blog.blueribboncampaignforme.org/2009/07/02/things-you-should-never-say-to-someone-with-chronic-fatigue-syndrome.aspx">Five Things You Should Never Say to Someone with Chronic Fatigue Syndrome</a><br /><br />To the above advice I would add this: <span style="font-style: italic;">do not refer to CFIDS as "chronic fatigue."</span> Not <span style="font-style: italic;">ever</span>. Doing so telegraphs that you do not understand the illness and that you do not take it seriously. Use the acronyms CFIDS, ME, or CFS, or say the name: Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, or Chronic Fatigue and Immune Dysfunction Syndrome.<br /><br />Do not insult your friend or your patient by lumping them with people who are "just tired all the time." That's not what this illness is. Not even close. (Read the quote from Lauren Hillenbrand in the heading of this blog and then read the CFS/ME Overviews section of my previous post, <a href="http://cfidswatch.blogspot.com/2009/07/emerging-understanding.html">An Emerging Understanding</a>.)<br /><br /><span style="font-weight: bold;">De Meirleir</span><br /><br />Dr. Kenny de Meirleir's assertion that he has discovered the "<a href="http://www.prohealth.com/me-cfs/library/showarticle.cfm?libid=14579">True Nature of ME/CFS</a>" has aroused considerable skepticism. Here are some commentaries:<br /><ul><li><a href="http://aboutmecfs.org/blog/?p=539">The Big Breakthrough (!)(?)</a></li><li><a href="http://blog.blueribboncampaignforme.org/2009/05/30/act-not-med-testing-prof-kenny-de-meirleirs-test--by-ciarar-farrell---a-must-read.aspx#comment-2298141">Testing Prof. Kenny de Meirleir's test</a></li><li><a href="http://www.prohealth.com/fibromyalgia/blog/boardDetail.cfm?id=1351932">Comments on Hydrogen Sulfide and the Methlyation Cycle in CFS</a></li></ul><span style="font-weight: bold;">Cheney</span><br /><br />Dr. Paul Cheney's announcements in April 2009 have also inspired some responses, particularly regarding his new position on omega-6 and omega-3 oils:<br /><br /><a href="http://aboutmecfs.org/blog/?p=857">Dr. Cheney Goes His Own Way - Again</a><br /><br /><span style="font-weight: bold;">Advocacy</span><br /><br />And finally, two articles in the realm of advocacy ask why there is so little being done to find the cause(s) of CFS/ME/CFIDS and effective treatments:<br /><br /><a href="http://blog.blueribboncampaignforme.org/2009/06/12/cfs-patient-groups-cowed-by-the-cdc---written-by-john-anderson.aspx">CFS Patient Groups Cowed by the CDC?</a> - John Anderson's scathing indictment on the failure of federal programs to address this illness or to even take it seriously. John points out that CFS advocacy groups have consistently failed to confront the government agencies regarding this neglect.<br /><br /><a href="http://oslersweb.com/blog.htm?post=604271">The Why</a> - Hillary Johnson's powerful and moving speech, given at the Invest in M.E. conference in London earlier this year. This is the speech which inspired John Anderson's comments.Alisonnichttp://www.blogger.com/profile/08072703204217023287noreply@blogger.com0tag:blogger.com,1999:blog-1499214413087992095.post-85445861509668737392009-07-21T09:24:00.001-07:002010-02-05T08:56:15.930-08:00An Emerging UnderstandingRecent articles about the illness in question suggest an increasingly coherent and comprehensive understanding of the illness may be emerging.<br /><br /><span style="font-style: italic;">Note: This illness is variously known as CFIDS, CFS, ME, and Fibromyalgia. The acronyms stand for "Chronic Fatigue and Immune Dysfunction Syndrome," "Chronic Fatigue Syndrome," "Myalgic Encephalomyelitis." I'll use a combination of the acronyms ME and CFIDS.</span><br /><br />Diverse paths of investigation appear to be converging on a connection between mitochondrial dysfunction, cardiomyopathy, and immune dysregulation; secondary factors such as leaky gut and central nervous system abnormalities; and possible causative factors such as viral activity and neurotoxins. These connections provide a complex but compelling picture of the workings of this heretofore baffling disease.<br /><br />In this model, an initial insult (viral, physical trauma, or environmental toxin) causes mitochondrial failure leading to secondary cardiomyopathy, which in turn leads to immune dysregulation which permits ongoing viral activity. This viral activity sustains the mitochondrial dysfunction, creating a stable closed-loop system of persistent illness which is very difficult to disrupt.<br /><br />At the same time, the low oxygen environment resulting from the cardiomyopathy leads to leaky gut and the overgrowth of organisms in the digestive system which are normally controlled or not present in healthy people. These organisms produce toxins which also degrade mitochondrial function and impede other systems critical to health, thus further reinforcing the closed-loop system.<br /><br /><span style="font-size:130%;"><span style="font-weight: bold;">ME/CFIDS Overviews</span></span><br /><br /><a href="http://cfsknowledgecenter.ning.com/profiles/blogs/come-to-bed-with-me">Come to bed with ME</a> - A brief introduction to the experience of being ill with ME/CFIDS. See also <a href="http://www.cfids-cab.org/MESA/Hillenbrand.html">A Sudden Illness</a> by Lauren Hillenbrand and <a href="http://www.cfids.org/archives/1998/pre-1999-article03.asp">Olympian Battles CFIDS</a>, an interview with legendary soccer star Michelle Akers.<br /><br /><a href="http://www.meactionuk.org.uk/ME_CFS_is_not_a_somatisation_disorder.htm">Evidence that ME/CFS is not a somatisation disorder</a> - ME/CFS advocate Margaret Williams discusses heart failure and post-exertional fatigue and their connection to other CFS symptoms such as cognitive impairment, persistent muscle and joint pain, headaches, and sleep disorders. This article contains a concise summary of Dr. Paul Cheney's cardiomyopathy theory (more on Cheney below) and also a powerful description of the impact on the quality of life of patients with this illness.<br /><br />From the article:<br /><span style="font-weight: bold; font-style: italic;">“In my experience, (ME/CFS) is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages.”</span> (Dr Daniel L Peterson: Introduction to Research and Clinical Conference, Fort Lauderdale, Florida, October 1994; published in JCFS 1995:1:3-4:123-125)<br /><br /><span style="font-weight: bold; font-style: italic;">"In comparison with other chronic illnesses such as multiple sclerosis, end-stage renal disease and heart disease, patients with (ME)CFS show markedly higher levels of disability."</span> (Quality of Life and Symptom Severity for Individuals with Chronic Fatigue Syndrome: Findings from a Randomised Clinical Trial. RR Taylor. American Journal of Occupational Therapy 2004:58:35-43)<br /><br /><span style="font-weight: bold; font-style: italic;">“There is evidence that the patients with this illness experience a level of disability that is equal to that of patients with late-stage AIDS, patients undergoing chemotherapy (and) patients with multiple sclerosis.”</span> (Professor Nancy Klimas, University of Miami, speaking at the launch of the US CDC campaign to raise awareness of ME/CFS, 3 November 2006, National Press Club, Washington DC)<br /><br /><span style="font-size:130%;"><span style="font-weight: bold;">Laboratory Marker</span></span><br /><br /><a href="http://www.prohealth.com/me-cfs/library/showarticle.cfm?libid=14579">Dr. Kenny De Meirleir's "News Heard Round the World"</a> - Dr. De Meirleir announces the discovery of a marker for CFS: high levels of the neurotoxin hydrogen sulfide (H2S) in the urine. He introduces an inexpensive lab test for H2S and connects H2S to many of the symptoms suffered by CFS/ME patients - and to mitochondrial dysfunction.<br /><br /><span style="font-size:130%;"><span style="font-weight: bold;">ME/CFIDS: Mitochondrial Dysfunction, Oxygen Toxicity, and Cardiomyopathy</span></span><br /><br /><a href="http://www.drmyhill.co.uk/article.cfm?id=381">CFS, The Central Cause: Mitochondrial Failure</a> - Dr. Sarah Myhill describes what she believes is the underlying cause of CFS: cardiac failure secondary to mitochondrial dysfunction. This page includes an excellent discussion of the delayed fatigue phenomenon that I have experienced consistently throughout my illness and explains the causes of many of the other symptoms experienced by people with CFS (including me). Dr. Myhill suggests testing for ATP production and other markers which she believes can provide a definitive diagnostic picture of CFS. She also touches on strategies for recovery.<span style="font-size:130%;"><span style="font-weight: bold;"><br /><br /></span></span>Dr. Paul Cheney's complex <a href="http://www.dfwcfids.org/medical/cheney/heart04.htm">cardiac failure/mitochondrial dysfunction/oxygen toxicity model</a> is based on Dr. Arnold Peckerman's study (see below) and backed by 20 years of research into CFS and treatment of many severely ill CFS patients. In my opinion Dr. Cheney's grasp of the characteristics and progression of the illness is second to none.<br /><br />Dr. Cheney also makes a connection between mitochondrial dysfunction, <a href="http://www.dfwcfids.org/medical/cavalry.html">immune system dysregulation</a>, and chronic viral activity (see below for more on viral involvement in CFS).<br /><br />Here are reports on Dr. Cheney's recent lecture in Virginia:<br /><ul><li><a href="http://www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=1346629">Paul Cheney Talk, Fairfax VA</a> - Chris (Consuegra?) encapsulates Paul Cheney's three hour lecture in Fairfax, VA, on April 25, 2009. Cheney discusses his theories about oxygen toxicity and diastolic dysfunction as the underlying causes of CFS, and his current treatment plan.</li><li><a href="http://sacfs.asn.au/news/2009/05/05_21_paul_cheney_talk.htm">Judy Roget's Corrections</a> - Judy suggests corrections to some of Chris' comments about Dr. Cheney's lecture.</li><li><a href="http://aboutmecfs.org/blog/?p=449">Dr. Cheney Goes His Own Way: The Virginia 2009 Lecture</a> - Cort summarizes Chris' comments about the Fairfax Lecture.</li></ul>Dr. Cheney currently has two new web sites under construction:<br /><ul><li><a href="http://cheneyclinic.com/">The Cheney Clinic</a></li><li><a href="http://cheneyresearch.com/">Cheney Research</a></li></ul>You may also wish to read Cheney's seminal lecture, <a href="http://www.dfwcfids.org/medical/cheney/heart04.htm">The Heart of the Matter: CFS & Cardiac Issues</a>, at the <a href="http://www.dfwcfids.org/index.shtml">CFS & FM Support Group of Dallas-Fort Worth</a>, and keep an eye out for <a href="http://www.dfwcfids.org/publications.shtml">publication of his latest lectures on DVD</a>.<br /><br /><a href="http://cfids.org/cfidslink/2009/070102.asp">Slow Flow</a> - Dr. Suzanne Vernon says that as many as 70% of people with CFIDS also have POTS (postural orthostatic tachycardia syndrome). Not enough oxygen is getting to our brains. She also cites a study which showed decreased blood volume in people with CFIDS.<br /><br /><span style="font-size:130%;"><span style="font-weight: bold;">Antiviral Treatments</span></span><br /><br /><a href="http://www.cfids-cab.org/MESA/Lerner.html">Cardiac Insufficieny Hypothesis</a> - Dr. A. Martin Lerner argues that a subset of ME/CFS exists in which chronic mononucleosis, caused by a virus such as Epstein Barr, cytolomegalovirus, or HHV6, is a factor - and that the virus infection persists in the heart and contributes to cardiac dysfunction. Dr. Lerner holds several US patents related to diagnosis and treatment of CFS/ME. This article contains links to articles related to Paul Cheney's work.<br /><br />A <a href="http://www.cfsviraltreatment.com/clinical_patient_study/index.html">clinical trial</a> by Dr. Lerner et al showed CFS patients treated with valacyclovir and/or valganciclovir experienced marked improvement. More Lerner articles are <a href="http://www.cfsviraltreatment.com/cfs_publications/index.html">here</a>.<br /><br /><a href="http://www.drpodell.org/chronic_fatigue_syndrome_hhv6.shtml">Physicians Encouraged by Valcyte</a> - Dr. Jose Montoya's study suggests that CFS can be caused by HHV-6 and/or Epstein Barr virus, and that Valcyte might be an effective treatment for CFS when HHV-6 is involved.<br /><br /><span style="font-size:100%;"><span style="font-size:130%;"><span style="font-weight: bold;">CFIDS/CFS vs. Myalgic Encephalomyelitis</span></span><br /><br /><a href="http://www.hfme.org/">The Hummingbirds' Foundation for M.E.</a> - M.E. activist Jodi Basset makes an emphatic distinction between Myalgic Encephalomyelitis and CFS/CFIDS. She connects M.E. with low blood volume and cardiac insufficiency, <a href="http://www.hfme.org/methemedicalfacts.htm">CNS and spinal abnormalities</a>, and presents a <a href="http://www.hfme.org/testingforme.htm">comprehensive list of tests</a> which can be used to diagnose M.E.<br /><br />This site contains a massive amount of material relevant to these illnesses. Also, Jodi's <a href="http://www.ahummingbirdsguide.com/abouttheauthor.htm">personal story</a> is a powerful cautionary tale about the risks involved in taking advice from physicians (and others) who do not understand this illness.<br /><br /><a href="http://www.nightingale.ca/index.php?target=whatis">The Nightingale Foundation</a> - Dr. Byron Hyde also makes a distinction between M.E. and CFS and says CFS is not a disease but M.E. is - and asserts that M.E. can be diagnosed by specific tests.<br /></span><br /><span style="font-size:130%;"><span style="font-weight: bold;">Web Sites</span></span><br /><br /><a href="http://cfids.org/">CFIDS Association of America</a> - Information on diagnosis, treatment, research, and advocacy.<br /><span style="font-weight: bold;"><br /></span><a href="http://www.cfids-cab.org/MESA/index.html"><span style="font-size:100%;">Maylgic Encephalomyelitis Society of America</span></a><span style="font-weight: bold;"> </span><span style="font-size:100%;">- This site's home page makes a powerful distinction between the illness commonly known as Chronic Fatigue Syndrome and the symptom of fatigue.<br /><br /><a href="http://fightfm.com/blog/">FightFM </a>- A web site devoted to Fibromyalgia which contains a large body of information relevant to CFS/ME/CFIDS.<br /></span><span style="font-size:100%;"><br /><a href="http://aboutmecfs.org/">Phoenix Rising</a> - News about ME/CFS and Fibromyalgia.</span><span style="font-weight: bold;"><br /></span><span style="font-weight: bold;"><br /><span style="font-size:130%;">Background Information</span></span><br /><br /><a href="http://www.cfids-cab.org/cfs-inform/Coicfs/peckerman.etal.03.pdf">Peckerman et al</a> - Study by Dr. Arnold Peckerman and others demonstrating that patients with severe CFS had significantly lower stroke volume and cardiac output than controls and less ill patients. This is the study which on which Dr. Paul Cheney and others have based subsequent research and treatment regimes.<br /><br /><a href="http://causeof.org/cfids.htm">Low Blood Volume and CFIDS</a> - A discussion of the phenomenon of low blood volume which has been observed in CFIDS patients, and the connection with low blood pressure and other symptoms related to CFIDS and Fibromyalgia.<br /><br /><a href="http://fightfm.com/blog/2008/03/24/new-study-recommends-cortisol-treatment-for-fmcfids-patients/">Cortisol Treatment for FM/CFS</a> - A study suggesting cortisol can provide relief of symptoms. I've tried cortisol myself, with dreadful results, so I'm skeptical.Alisonnichttp://www.blogger.com/profile/08072703204217023287noreply@blogger.com0