CliffsNotes

Leading up to my diagnosis (the abridged version): 
March 2011: I awoke with a fever and a mysterious traveling rash that moved around my face and neck for about a week and then vanished; the source was never discovered.

Spring and Summer: A spike in joint and muscular aches/pains was easily explained away by my constant training for triathlons; which I continued to participate in despite my body being cranky and suggesting I slow down.

Late August:  I lost feeling in my hands and feet, along with some cognitive function.  My short term memory and ability to focus were also severely impaired.

Early September: Blurry vision was added to the mix. I made an appointment to get a physical. I explained my symptoms to the physician as well as the fact that I had previously been treated for Lyme disease in 1994 and was 100% certain I had it again; the vision and memory issues were what plagued me the first time. A good amount of blood was drawn, and I was tested for everything under the sun. All of my blood work came back negative or normal. I was told I was in good health.

Late November: I visited a different physician (it took me awhile to get an appointment) who began treating me on the spot.  The symptoms l outlined during our first meeting, coupled with a “barely positive” Lyme disease test from November of 2009 that was in my medical records I was asked to collect prior to my first appointment, left this doctor with zero doubt that I had Lyme disease. This was also the first time the results of my Lyme disease test from 2009 were discussed with me. 

Mid-December: During my return visit to the doctor to discuss my blood work I learned that in addition to treatment for Lyme disease I was going to be treated for 3 other tick-borne infections; Babesia, Bartonella and Mycoplasma.

Medication

Seventeen months and counting… my treatment shall remain on-going until I am symptom free. I have been on as many as seven antibiotics at one time. Currently I am on five.  I have been on up to 21 supplements per day; currently I am on about 18. I get blood work done every 8-10 weeks to make sure my organs are functioning properly, as well as other random tests that are important markers for my Lyme disease battle. My symptoms ebb and flow with antibiotic changes, dosage adjustments, physical exertion and bad food choices. 

That’s News to Me!

My current Lyme disease experience has been very different from my first experience in 1994 when I was treated for a month with IV antibiotics and told I was cured. Here are a few things I have learned since my chronic Lyme disease diagnosis:

• There is a deep division in the medical community over whether there is such a thing as “chronic Lyme disease” and there’s an ongoing debate over how to help/treat people who suffer from long-term effects of Lyme.
• Lyme Literate Doctor’s (LLMD): Due to the issues with the Lyme disease testing that I have documented throughout my blog it is sometimes necessary to seek out a physician with the expertise to consider clinical symptoms in addition to blood tests to get treatment for Lyme disease.
•  Insurance companies do not cover the majority of treatment provided by LLMD’s, because  LLMD's  treat their patients for a disease that is not acknowledged as a disease by the NIH, CDC, WHO, etc.
• Co-infections: I had no idea there were other tick-borne infections one could catch from deer-ticks until the day I was diagnosed with three of them.
• I had never heard of, let along experienced a Jarisch-Herxheimer Reaction (Herx), until two months into my treatment. I wish I was still in the dark about them. They are very unpleasant and of course do not come without controversy.
• Certain foods can effect illness and injury

About that testing

What is a barely positive Lyme disease test anyway? I don’t remember the explanation, but I will be sure to ask my doctor to explain it to me the next time I see him. Hey, cut me some slack, I was in bad shape the first couple of times I went to his office for my appointments.  

… Now back to the point of this post!

"Antiscience and ethical concerns associated with the advocacy of Lyme disease”; the article that I shared in my previous post was written from a point of view that I have trouble understanding since my life has totally been changed by chronic Lyme disease. The article reflects the degree of hostility toward chronic Lyme disease patients, the physicians who treat them, as well as the Lyme charities that were formed in order to support education and research on behalf of the patients. There are numerous Lyme disease non-profit organizations, some of them not as informed as others. The article says that they are all well-intentioned, but ignorant and ill-informed; that is not an accurate portrayal. Many of the charities have established medical and scientific advisory boards to advise their organization. Casting a wide net to discredit research on Lyme disease because some of it has been partially funded by Lyme disease charities is disturbing. These types of efforts have led some researchers to initially submit research studies and not list all of the funding sources because they find that when presenting findings to government officials or other scientists, there has been more interest in the funding sources than the actual research itself.

Previously I mentioned that a discussion regarding this article during the Lyme disease hearing on Capitol Hill that I attended led me to read it.  In the article the authors stated that the public’s health will be endangered “unless responsible physicians, scientists, government leaders, and the media firmly stand up for an evidence-based approach to this infection that is based on high-quality scientific studies.”  And now to paraphrase Congressman Smith's remarks regarding this statement from the hearing: In fact, this is exactly what the Lyme community wants; however, it will be necessary for the physicians, scientists, government leaders, and media to show good judgment – to evaluate the evidence to see if it is based on the best science and to scrutinize the studies and the critiques of those studies to determine whether they are of high quality. Scientists who represent both sides of the debate need to be able to speak without restriction about what their studies have found.  Government agencies need to show leadership and to forcefully say what is known and what is not known, based on the best available evidence. 

Within the last month I’ve experienced a minor set-back with one of my co-infections; I’ll get to that eventually in the coming weeks. In the meantime while I get treated for chronic Lyme disease, which is no picnic, I will continue to get frustrated by the Lyme disease debate. As the debate rages on the people who are suffering the most are the ones who can’t obtain diagnosis and treatment as their quality of life goes down hill, the doctors who are shunned from the medical community for believing in something that “defies science”,  and people like me who finally got diagnosed and are constantly being bombarded with negativity surrounding their treatment.