3500+ people have taken our survey. Have you?
The IDSA is reviewing its Lyme guidelines. Its handpicked panel excludes Lyme patients and Lyme-treating doctors. It includes people with financial conflicts-of-interest.
Our survey allows you to express your views about Lyme diagnosis and treatment. We'll share results with the IDSA, journalists, politicians, health policy makers, and the public at large. Time is short. Do it now.
|
Sadly, there is no place in any survey for those such as me. Fairly certain I have Lyme disease or at least complications of tick bites, the first contracted in the early 60s in Northern California, and many thereafter, all with presenting symptoms following the bite. Yes, I am affected. And yet, I have no funds for diagnosis, let alone treatment. I personally don't think long term antibiotics are a healthy recourse for some people anyway, after reading many forum posts, i'm not alone in that assessment. I'm now caregiver for my 93 year old Dad who I also believe is Lyme affected, as was my Mom. My Dad has suffered many health issues through his elder years that easily could be related to vector infectious disease, including hearing loss, blindness, atrial fibrillation and now dementia. His own exposure is lifelong and dates to age 3 or 4. His doctors ALL turned aside my suggestion that he might have Lyme disease. I believe it can be lifelong, and generational, passed down in families. My Brother, with life long exposure due to location and lifestyle and classic symptoms did not pass a Western Blot and is therefore written off, by his doctors. I've learned it really is up to the patient to bypass conventional routes, and if so inclined and financially able, to seek out LLD's and specified Laboratories, even though Igenex can return a negative result, when a patient does have Lyme disease, making an antibiotic challenge and retesting, required. I'd like testing if for no other reason than to be a countable California statistic, because I think California is an endemic State, and "victims" are under diagnosed, therefor, Lyme disease is under reported here. Lyme disease should be handled in an infectious disease manner, and it is not. Sorry to make such a long comment, here....I hope this survey does some good where it needs to, in the right channels.
ReplyDelete