I am so sorry you are going through this. It is very important you be your own health care advocate.
You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Read the books written by the top LLMD, Dr. H, titled, "Why Can't I Get Better?" and "How Can I Get Better?". They are an excellent source of information.
Also read "Cure Unknown" by Pamela Weintraub. View "Under Our Skin" and "Under Our Skin2: Emergence" DVDs. Check your local library or buy them used online.
Posts: 8474 | From Illinois | Registered: May 2006
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Most LLMD'S don't participate in insurances and your intial visit (sometimes up to 3 hours long) will be expensive so you need to get your finances in order. Specialized testing is usually ordered.
Start a folder and include all things medical in it, all previous blood work results, all providers you have seen, diagnosises, tests performed, medicine list, symptom list. Take this with you to your LLMD visit.
As you may have experienced, mainstream doctors have FAILED us. They are not properly trained in Vector borne diseases and many don't want to learn.
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You can request a LLMD through Global Lyme Alliance here;