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.
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.
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.
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.
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.
A Friend IndeedThen 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 Doug coil machine, 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.
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.
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.
My Own MachineFinally, in late July of 2011, after hearing Sue's cautious description of improvement in her symptoms, I called John, the man who'd built Sue's coil machine, and ordered one for myself. I also ordered a copy of Bryan Rosner's book, Lyme Disease and Rife Machines.
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.
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.
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.
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.
This has happened three times in succession. There is no longer any doubt in my mind that the coil machine is having an effect.
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.
But I have hope again. I'm not working on that damn process of acceptance any more. To hell with acceptance.
The fighter is back.
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.