Lyme Files Update – what has been going on?
The Lyme Files was originally set up as a blog to keep those interested updated with my own battle with chronic Lyme Disease. My idea arose when I realized how helpful it is to read about what others are doing. More than that, I found it very comforting as I read other stories to know I’m not alone.
What has happened since 2013 in my life?
First of all, I now have seven beautiful grandchildren! At one point in time, when the medical profession had no idea what was wrong with me, I wondered if I would even see my first two grandchildren again. The specialist I had been sent to told me, in front of my dear wife, that they thought I had small cell carcinoma – aka lung cancer. In other words, they were suggesting I was under a death sentence, lung cancer is almost always fatal.
In time, of course, all cancer tests came back negative. From there, it went from one narrow guess to another. I say “narrow,” because not one doctor out of the plethora of doctors and specialists I visited would consider all my symptoms. Every one of them would only consider one or two symptoms.
It was a retired doctor, who has successfully treated many, many cases of Lyme disease, who first accurately diagnosed me (later confirmed by Western Blot). If only I had known! The vast number of symptoms should have told the doctors, if they had only been educated in Lyme disease, that I had the disease. In fact, the need to diagnose based on clinical presentation, rather than on unreliable blood tests, is right on the CDC website!
After I was diagnosed, I received treatment from my sympathetic GP. Unfortunately, he was not trained about the disease, and only treated me under advisement from a retired doctor who does know the disease. Even more unfortunately, for me, an infectious disease specialist discovered that he was treating me, and threatened to report him to the College of Physicians and Surgeons if he did not desist.
I had improved dramatically by this point, after 6 months of antibiotic treatment with various different antibiotics. However, when the treatment was stopped, I began to crash within two months, and became almost completely bedridden.
I thank God I received a phone call after more than a year of struggling and trying to self treat. The person who called me I was new at the advocate agency and wasn’t supposed to be calling people, but I am so glad she did! Thanks to her call, I found a naturopathic doctor who is licensed to prescribe antibiotics and who is trained by ILADS in the diagnosis and treatment of Lyme disease.
It requires a full day every time I go to see him, because I must take a ferry and drive across a large city to see him, but I believe this is what has saved my life. It has been a steady battle, with many different protocols, but I am back on my feet. It is because of my own struggle to find an LLMD (Lyme Literate Medical Doctor) that I created a sister website, www.LymeClinics.com .
Lyme Files Hiatus
I have not been able to stay off antibiotics. The longest I have been able to go is 2 months. However, the alternative, being totally disabled, it not something I can accept. It is because it has been such a struggle to keep up with daily living that I have taken so long to to an update on The Lyme Files. (sorry)
I did take a year off pharmaceutical antibiotics, going instead on the Cowden Protocol, which uses natural antimicrobials and detox compounds. By doing this, my body and especially my liver got a much needed break. Unfortunately, by the end of one year, I was going downhill with increasing speed.
My doctor then put me on bicillin by injection, which my wife was able to administer. The improvement was very dramatic. In fact, it was the best I have been in years. However, once again, it only worked for so long, and then there was no further improvement.
Once again, we stopped the treatment, taking only supplements to help boost my immune system, and waited to see if I would stay at the level I had reached, which was a lot better than before.
Once again, by two months after stopping the antibiotics, my symptoms were coming back with a vengeance.
Updating The Lyme Files
I am now on oral cefixime, and going through a very nasty herx. What comes next, we don’t know. At this point in time, I suppose we are all guinea pigs. No one yet really knows how to beat the disease after it becomes chronic. However, it has continued to be possible to keep going, as long as a doctor is still available who can prescribe antibiotics.
The good news is, there are doctors – scientists – out there who aren’t going to give up or take no for an answer. They are using their own money or scrambling to raise money in an antagonistic environment in order to continue their research. More and more politicians are believing the science being presented to them, while many more doctors, especially younger ones, are coming on board, too.
The cry is getting louder. We still have hope! Never, never give up. The Lyme Files will try to keep you up to date.