Oh ask away if you have any questions, those are definitely reasonable.
The ILADS site has a quick facts page that seems to focus on percentages, how many people are effected, etc.
www.ilads.org/lyme/lyme-quickfacts.php It's supposedly 300,000 people a year. This Center for Disease Control number only came out last year, previously it was estimated to be 30,000 people per year but efforts were made to get a more accurate number recently. Lyme groups say the number has to be much higher considering how under diagnosed it is. On average supposedly it takes someone 4 years to be diagnosed. From my own calculations 300,000 is almost 1% of the population, which sounds similar to ITP but I definitely doubt that because since I was diagnosed in one months time I've become aware that 6 other people I know have had long term lyme problems. I've known of 2 other people with ITP in the five years that I’ve had it. It’s likely percentages of Lyme may just be higher in New England as this area is considered endemic to tick born diseases but it’s being diagnosed in more and more states.
There seems to me to be way more controversy over lyme than research. Apparently, from what I've learned the person who discovered Lyme in the 70s, Alan Steere, drew a hard line in the sand and said lyme bacteria cannot survive after a single dose of antibiotics. It's completely impossible. Anyone with long term complications must be suffering from residual effects of the initial damage. He's a renowned dr with the ivy league pedigree whose opinion holds a lot of weight in the medical community. Here’s a long article that discusses his controversy.
www.bostonglobe.com/metro/2013/06/01/lyme-disease-rise-and-controversy-over-how-sick-makes-patients/OT4rCTy9qRYh25GsTocBhL/story.html On the other side of that line are Drs who work in heavily tick populated areas who treat thousands of Lyme patients and claim to see positive results from continual antibiotic treatment. Some recommend a long-term patient receive 12-24 months of a variety of different rotating antibiotics. Plus there are those that incorporate nutritional support, herbal supplements etc.. Here is a link to an LLMD’s treatment guidelines that is well respected on the other side of the treatment line.
www.lymenet.org/BurrGuide200810.pdf It’s from ’08, I think there’s a more updated one out there. Research approaches should change as more is known about treatment results. It doesn’t sit right with me that the American medical association has so quickly concluded that there’s only one treatment plan for something that is not very well understood. In my opinion though, I do feel that the medical community is starting to back away from their former level of certainty as more and more evidence becomes available that runs counter to the 70s & 80s medical information regarding Lyme.
There is more recent research showing that bacteria can in fact persist beyond a simple round of antibiotics. Research has also been done with, I think both humans and animals showing that a sterile tick raised in a lab can be attached to humans and animals treated with antibiotics for long-term Lyme and still become infected with the Lyme bacteria. Here’s a link to Columbia university researcher discussing some new approaches and research.
www.columbia-lyme.org/about/director_message.html I’ve been thinking about all the bias, fear and controversy that surrounded the early history of AIDS in the U.S. in the 70s. Partly it was linked to homophobia but I also think there’s finger pointing, name calling, fear mongering etc. etc. when there is so much uncertainty associated with a disease. Everyone has a theory and when none are immediately proven the people who work in medicine as a business are going to hold fast to a very conservative approach. It took a lot of public efforts to have the AIDS virus acknowledged and treated and researched by the medical community. I just watched the HBO movie The Normal Heart and it was all about these early stages of the disease and the Dr. played by Julia Roberts who was ostracized from the medical community for believing in and treating people without any formal protocols what was then referred to as “gay cancer”. Lyme disease awareness must have come about around the same time as AIDS but hasn’t received anywhere close to the amount of attention or research so it’s not surprising to me that the disease is still caught up in so much misinformation and bias and ignorance.
I think people react a lot differently to infectious diseases than they do things like autoimmune disorders. Even just telling people I have Lyme disease is so interestingly different than telling someone I have a rare blood disorder. People disengage on some level when you tell them about ITP. You can tell some people are maybe relieved or feel guilty that they’re not in your shoes and may feel pity for you. Talking about Lyme is so different. People tune right in and have questions, share their knowledge, express their fears and opinions. I feel more of a connection with people talking about Lyme. Maybe this has more to do with the disease being more well known than it being something anyone could catch but I feel like that interest and fear could definitely get misaligned and misdirected all over the place when people can’t rely on scientific evidence to prove things one way or another.
Anyway sorry for the tangents and back to your questions. I never saw a tick. I never had a rash. I had no idea I had ever been bitten by a tick. I never even saw any ticks anywhere I went or had any friends get ticks on them in my presence. In all my online research trying to understand all the symptoms I was dealing with that weren’t in keeping with ITP I never came across anything that suggested Lyme disease. Even if I had, to be honest, given that I thought I had never been exposed to a tick bite I don’t know that I would have given it much thought. Now I’ve read that apparently something like 50% of people with Lyme disease have no knowledge that they ever had a tick bite. I wish I had realized that five years ago.
My ITP may have actually been caused by Lyme. It’s too early to tell. I’ve only been on antibiotics for a little over a month. BUT my blood test results that I recently checked online show my platelet count to be 89 in one test and 106 in another. I don’t know why they would have done two tests two days apart and why the second test was higher than the first when it was the same blood. I have to speak to my Dr. and find out if I’m reading the platelet count wrong and find out what the different blood panels were for but I’m accustomed to seeing my platelet count run around 50 – 60k. If these numbers are correct this will be the highest my platelet count has been in five years. I’m not getting my hopes up over the whole thing though. My family has a lot of autoimmune issues and given that lyme isn’t something that is necessarily cured in the long-term people I’m not exactly celebrating.
I always hovered around that 60k, was never treated with immunosuppressants and was never splenectomized. I was shocked to read about the danger of Babesia and splenectomy just because I’ve read about so many people here debating getting a splenectomy and never heard about that concern. Are people informed of the danger they could face if they live or work in an area known to have a tick problem?
Here’s a study showing that thrombocytopenia can be a symptom of Lyme. It was the first thing that came up when I googled “lyme thrombocytopenia”. I found it so frustrating to realize that I live in an endemic are where this is considered a more common bacterial infection, especially for people like me who used to love to camp and hike all around the north east… I just would have thought my dr.’s would have tested me for common bacterial and viral infections given that ITP can be caused by such things. I think they just tested me for AIDS and Lupus and called it a day…
www.ncbi.nlm.nih.gov/pubmed/8183774 The story about my friends Dr. was to illustrate how ignorant the majority of Dr.’s are. Those kinds of stories are common. I was ridiculously ignorant too. There’s just not enough info out there aimed to educate people. I think all the controversy surrounding Lyme diagnoses has something to do with this and that’s just really really unfortunate for people who could be preventing needless exposure with just a little more public outreach. My own new primary care doc who at least finally recognized my symptoms as Lyme and finally tested me told me that ticks can only carry one disease, so if I had Lyme there was no chance I also had any other tick born disease. This is not true at all. There’s a lot of medically recognized evidence out there that ticks carry multiple diseases. The infectious disease specialist I saw told me that I don’t have the co-infection Babesia because that usually has an acute onset where you either die or recover. This is not true either. There is well established and medically accepted info out there that says Babesia can linger in your system and is not treated by the same antibiotics that treat Lyme. I’m still waiting to receive the results for the co-infection test that I paid out of pocket for through a LLMD visit. I certainly don’t want to have any co-infections but I’m not just going to assume that I don’t have any and wait and see. I think the standard medical practice may be to retest for co-infections later if symptoms persist after Lyme treatment. While the bacteria just floats around causing more internal damage… no thanks… It seems like this level of ignorance is the norm for Lyme. It’s somewhat understandable given all the uncertainty and controversy and everything. It’s all been a learning experience for me.
Your dogs tick can be sent off and tested.
www.igenex.com/files/ticktest.pdf In Massachusetts I know UMass also tests ticks.
ag.umass.edu/services/tick-borne-disease-diagnostics They even have a program where they will tests ticks for free for residents in a lot of Massachusetts communities. A lot of the participating communities are along the heavily touristed coast. I’d love to see this advertised to all the unsuspecting families who visit every summer.
www.gazettenet.com/news/townbytown/deerfield/11589395-95/state-grant-allows-university-of-massachusetts-researchers-to-offer-free-tick-testing-in-32
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