MTHFR Resources

An 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 Dr. Amy Yasko's work related to the same genetic defect in autistic children.

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.

I'm a Mutant!

MTHFR Deficiency and Defective Genes (Updated 1/21 and 5/2/13)

Mutated Genes and Me ... and Maybe You?

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:

MTHFR Mutations and the Conditions they Cause - from MTHFR.net, Dr. Ben Lynch's site
Symptoms of MTHFR Deficiency - from Methy-Life.com, Jaime Horne's site

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!)

One Year of Coiling

In a few days I will have been experimenting with my coil machine for a year. Since my last update was in May, almost six months ago, I figure it's time for another.

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 (Jarisch-Herxheimer reactions) which lasted longer and longer.

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.

Coiling update, May 2012

I've been coiling for Lyme for five months, so I figure it's time for an update.

As I mentioned in an earlier post, 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.

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.

[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.]

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.

Doug coil machine resources

Warning! See a doctor before subjecting yourself to electromagnetic fields*! 

(*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.)

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.

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, Lime Disease and Rife Machines.

When I was wondering what exactly a Doug coil machine is, I found What's a coil machine? 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 unscientific explanation of how a coil machine might kill pathogens. The video of the collapse of the Tacoma Narrows bridge is particularly graphic. Don't let young children or pets watch it without supervision.

I also loved Bryan Rosner's interview with Doug MacLean, inventor of the Doug coil machine. His story is quite inspiring.

Last but not least, I experienced a sharp stab of malicious joy while watching some spirochetes being stunned into stillness 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.

A New Direction: Coiling for Lyme

Going over to the Dark ... er, Lunatic Fringe Side.

By now you have probably heard about the collapse of XMRV research by Judy Mikovits and the Whittemore Peterson Institute. If you haven't, details of the whole sordid story are available at X Rx Blog and Phoenix Rising, among many other sources.

The news of this disaster came at a very bad time for me. In the fall of 2009, samples of my blood submitted to IgeneX came back positive for Lyme disease and Bartonella. I opted to try an acupuncture and herbal treatment regime with Tim Scott.

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.

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.

Dr. Deckoff and the new WPI clinic

Dr. Jamie Deckoff-Jones is now working for the Whittemore Peterson Institute, hiring staff for their new clinic, 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.

Horror Statistics from the US Government

Government statistics show an appalling neglect of ME/CFIDS research which is costing the US economy billions. From the CDC and NIH web sites:

• Number of people in the US with HIV or AIDS, diagnosed or undiagnosed: 1.1 million
• Number of new Lyme cases reported in the US between 1990 and 2008: 328,128
• Number of people in the US with CFS: 1+ million (tens of millions more have "similar fatiguing illnesses" but don't meet the CDC's strict "research" criteria)

• NIH money to be spent on HIV/AIDS research in 2010: $3 billion
• NIH money to be spent on Lyme disease research in 2010: $23 million
• NIH money to be spent on CFS research in 2010: $3 million (yes, you read that right. One thousand times less than HIV/AIDS!)

• Number of categories getting more research money than CFS: 209
• Number of categories getting less research money than CFS: 2

And yet...

Dr. Nancy Klimas told the New York Times:

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.

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) I would rather have H.I.V. [emphasis added]

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:

• hay fever, $6 million
  
• Tourette Syndrome, $9 million
  
• Carcot-Marie-Tooth Disease, $13 million
  
• homelessness, $13 million
  
• methamphetamine, $70 million
  
• Small Pox, $98 million
  
• violence research, $191 million
• influenza, $212 million
• health effects of climate change, $300 million
• nanotechnology, $326 million
• tobacco, $326 million
• depression, $418 million
• obesity, $687 million
• networking and information technology R&D, $950 million
• drug abuse, $1 billion
• substance abuse, $1.8 billion
• health disparities, $2.7 billion
• bioengineering, $2.9 billion
• biotechnology, $5.5 billion
  

What's wrong with this picture?

Maybe the CDC's Dr. William Reeves can clarify things for us. Speaking about the recent discovery of the connection between ME/CFIDS and the XMRV retrovirus, he told the New York Times:

"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. My expectation is that we will not." [emphasis added]

How's that for scientific objectivity?

Hillary Johnson, author of the book Osler's Web, is very familiar with the CDC's approach to "CFS." Here's a sample of what she thinks of Dr. Reeves' opinions:

Let’s start with Reeves’ comment: "Until the work is independently verified, the report represents a single pilot study."

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 pilot study?

About the XMRV researchers and Bill Reeves' "surprise" that such a prestigious journal as Science would publish their study, Hillary adds:

These collaborators didn’t just arrive on the scene last month from Mars; they knew going into this work what the CDC did to Elaine DeFreitas 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 Science had to take the paper.

The privately funded Whittemore Peterson Institute, which led the XMRV study, says this:

Is the government doing enough for ME/CFS?

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 $25 billion dollars a year [emphasis added] 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 and high economic costs [emphasis added] chronic fatigue syndrome (ME/CFS) ranks near the bottom in funding of the over 200 diseases and conditions which the NIH funds.

Twenty-five billion dollars every year?

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 those of us who foot the multi-billion dollar bill for the loss of productivity of the people disabled by this disease and the ineffective medical care available to them?

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. This disease is costing you money!

Comments welcome.

Update: In her blog, Life as we know it, Karen Campbell of CFS Facts has posted a different perspective on some of these numbers in NIH Research Statistics Show Fundamental Inequality. Karen lists a "research dollars per patient" for people suffering from various diseases, including ME/CFIDS. See also her blog "Letter Writing Time!" and this forum post.

Thanks to Hillary Johnson and her blog post about the NIH's nifty new search engine, without which I wouldn't have discovered these horrifying statistics.

Thanks to Peggy Munson and her blog post Fly Away to XAND-ado, or Where Is Elaine DeFreitas? for inspiration and background material for this post.