Health Changes

Chronic Lyme Disease illustrated by Hannah McMillen

Days ago, I had the unexpected pleasure of talking with a friend's husband who was our local family doctor for years. When I returned to nursing, I was given the opportunity of working part time in his office and appreciated the support of his wife who was not only a wonderful supervisor and colleague, but became a good friend as well. Although by necessity, my care had to move to a different provider, I still have fond regards for this doctor and his wife. She was not in when I called, and my former doctor inquired as to how my family and I were doing. I had a nice chat with him.

Eleven years ago, I sought a second medical opinion and was diagnosed with Lyme Disease, as were my children.  My symptoms dated back to my early twenties and so by the time I was diagnosed, I had Chronic Late Stage Lyme Disease. My doctor knew that I wasn't feeling well and that I wanted to seek other opinions as to what else could be done and he supported me in seeking nutritional advice which led to more testing and the rest is history. Our lives quite literally went in different directions, as lives often do. I call his wife a couple of times a year to touch base with her, inquire as to how their family is doing and talk politics. I hadn't expected her husband to be at home, but a couple of years ago his practice changed and he is now employed by a local hospital to establish a satellite clinic in his area and his work days are shorter than when he was working for himself.

Talking to him, the years seem to melt away, and his inquiry about my present health, likely brought on more feedback than he expected. I filled him in briefly as to my present treatment, though I know that he shares the opinion of most in the medical profession regarding Chronic Lyme Disease and its treatment.They do not believe that symptoms indicate on-going infection and consequently don't feel that long term antibiotic treatment of the infection is warranted.  Instead they believe that in its chronic state palliate or symptom relief is all that can be done.

As I told him about my "alternative and controversial treatment" I carefully stuck to what he could relate to: the medical tests and facts. I told him that I had had an inflammatory style stroke almost four years ago that I  recovered from and related that I thought it was brought about after pulsating low dosages of a strong antibiotic, as when it's effect wore off, my recovery was swift and nearly 100% complete. I then told him that the most interesting part of this experience had to do with learning that my brain scans revealed several brain lesions, likely caused by lyme disease and that the symptoms of my stroke were only exaggerated forms of the same symptoms that I had had for years.

I also told him that I am presently readdressing the possibility of having Hemachromatosis, a blood disorder where there is too much iron in the blood (unrelated to Lyme Disease).  My father had had it and as it can be hereditary, my girls and I had been tested years ago, while I was seeing him. I thought the tests were conclusive but learned recently that they were not and that I should be tested yearly as with my family history I have a greater chance of developing it. I also related to him that I had been tested and treated for a co-infection that often accompanies Lyme Disease called Babesia which causes anemia, that could further complicate the assessment of Hemachromatosis and possibly mask this disorder. I take pride in using my nursing knowledge in my own care as well as the care of my family.  I have learned the hard way that a patient has to be their own health care advocate and ask questions, especially when symptoms persist, though sometimes this means seeking answers when none exist.

My new TV chair...to strengthen core muscles as I watch TV!

Both of us were aware of our different views of persistent Lyme Disease and best possible treatment options, and clearly we differ about the decisions regarding treatment. He made it very clear that eliminating Vitamin D on my present treatment was a concern to him. I assured him that I am looking forward to getting off of this unusual protocol ASAP, though I also let him know that I have experienced many positive changes from this treatment. Being able to get restful sleep as well as eliminating on-going pain and chronic cystitis (bladder inflammation) has been a huge plus, though my skin suffers from the lack of Vitamin D, but knock on wood, my bones have not.

I did tell him that I missed getting holistic care and that some of the new changes in the medical system are forcing me to continue the hunt for good doctors that are willing to treat my lyme disease, especially after the well-known family doctor that I had transferred my care to was forced to "dump" his Chronic Lyme patients, including me and my girls. We have been forced out of state to obtain ongoing medical care. Doctors' medical licenses are under threat in this state if they choose to treat Chronic Lyme Disease patients. I read not long ago that only five states have legislation that supports the open care of patients with Chronic Lyme Disease and even when legislation is passed to protect doctors' rights to treat such patients, often the hospitals that they work under will not support them treating us. I feel like a leper in a leper colony!

My old doctor queried as to whether or not networking with other lyme patients would help me to find other providers. My answer was quick and to the point: we are all having issues finding care! The few lyme specialists in surrounding states accept no insurance and are very pricey making care financially prohibitive for most of us. While I am not alone in my complaint, his response was most surprising..."Of course, insurance won't cover what isn't approved of".

We finished our conversation quickly but after I hung up, I realized how many feelings I still have about the medical community not accepting new research regarding Lyme, which has shown active lyme infection persists following antibiotic treatment and refute hard core scientific evidence that Chronic Lyme exists, causes brain and other serious neurological dysfunction, and too often goes without diagnosis until the disease has caused significant and perhaps permanent damage! Although I have no feeling of ill will towards this particular doctor, or the others that are "lyme-illiterate", I do continue to scratch my head that they have no apparent concern for the many patients that aren't identified and treated before it gets to this late stage.

How is it that the governing medical boards can ignore the dilemmas for patients who choose to continue to treat their disease like other seriously ill patients do? We need long term treatment and though it comes with risks, why is it acceptable that cancer patients be given the choice of high risk treatments and NOT lyme patients?  The limiting of our choices is appalling and getting worse all the time! Unless we are to settle for simple palliative care, which is too often the case due to the stringent guidelines the CDC (Center of Disease Control) who continues to maintain guidelines that are too strict for proper identification and treatment of this horrendous disease.

Not knowing I had this disease, I passed it to my girls in utero. As a consequence of this fact, I vowed years ago I would never give up seeking cutting edge affordable medical care and would willingly become a guinea pig for science. It is for the future of my daughters' health that I do so. I have exhausted the more traditional ways of treating Lyme and have tried a more experimental treatment with mixed results. I am once again receiving physical therapy to regain the strength lost during this treatment.

My home physical therapy program to get strong again!

I am participating in yet another experiment that is looking at the fact that many with chronic illness have severe chemical sensitivities as well as environmental sensitivities. Besides using dietary changes, mild to moderate exercise, and various forms of alternative medical treatment, many, like me, are exploring options of reducing our exposure to various radio frequency waves to further enhance our health. Crazy? Maybe, but I believe that most medical sciences were deemed so initially?

Crazy or not? A hat made of silver coated threads to shut out radio waves.

Some of the latest statistics are showing that as many as 300,000 are being stricken with this disease each year! It is mind blowing to me that many of them will go undiagnosed and develop late stage lyme within a very short period of time! Why is our country continuing to avoid addressing the treatment and research needs of this horrendous disease? It is especially puzzling when our government has admitted that they ran experiments on Plum Island years ago to develop biowarfare weapons that included enhancing tick born diseases that would render armies useless. It is likely not by chance that the outbreak of Lyme Disease in Lyme, Connecticut erupted during the same time that this weapon research was being conducted with animals in open pens only a short distance away!

Here at Little House, we continue to be open to all the efforts to address this disease and others like them and welcome your concerns and issues. You may leave your comments below or privately write to me at jmcvermont@comcast.net. I would be happy to share any information I have regarding this disease (from ILADS) and what I know about the various treatments that people are using to improve their health. I offer no clinical advice, but rather share the plight of those of you who are continuing to seek help for this disease.