I would ask for copies of your bloodwork, sometimes they dont see a positive as it should be read.....
One suggestion for an LLMD to check out -- in the upper right corner of this webpage, there is a line that reads:
inbox / logout / my shortcuts
If you click on 'inbox, it will take you a private page that is not visible to the public here. I am sending you an email there with the name of an LLMD I thought of who might be near you.
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So how to find an LLMD? Your profile says you are in KS, so I would do three things:
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1 -- email to
contact [at] ILADS [dot] org
and tell them what area you live in, like near Topeka or near Kansas City, or whatever, and how far you can travel ... they will send you names of docs who think the ILADS way. ILADS is short for International Lyme and Associated Disease Society, which is the main voluntary group for docs who think more progressively about Lyme.
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2 -- Look around online yourself, but putting in searches such as
LLMD Kansas City
or whatever makes sense.
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3 -- You can also search for
Kansas Lyme
or Missouri Lyme, or whatever you're near
and see what hits you get.
There are often local groups you can contact who can give you leads to a local LLMD. Because of the deep divide in the medical community, LLMDs tend to stay quiet, so that's also why we don't post their names in the open here. Sounds sketchy, but it's the way things are for now.
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Let us know how you do, okay? If you come up dry on LLMDs, let us know, and we'll brainstorm some more.
Take care – and hang on! You're wise to keep pursuing answers.
(end of message)
Welcome to MedHelp --
Good for you for taking action! First, to look for a doc, and then to look for another doc to be sure the first doc knew what he was talking about.
I would do exactly what you are doing. The '24 hour' rule about how long the tick has to be 'attached' is really not useful, but the docs not up to date on these things really cling to that standard. Ticks don't wear watches, so they don't know how long to wait before spitting the Lyme bacteria into your blood stream.
Finding a Lyme specialist is the next trick. You will see the term LLMD used here ... it's patient slang for 'Lyme Literate MD', meaning a doc who thinks more progressive thoughts than the doc you just saw. It's not a credential, and no doc calls him/herself an LLMD. In fact, most LLMDs fly under the radar because the nonLLMDs try to make trouble for the LLMDs with the medical board for treating Lyme and its coinfections aggressively.
The sooner you treat, the quicker and more sure the cure, so you are wise to keep pressing ahead. I had all the symptoms you are having, too.
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