Hi everyone I really don't know where to go from here I'm lost as I can't seem to find a LLMD and they all seem a little sketchy while my GP who I saw today says that I don't have the symptoms of latent Lyme and no further investigation is needed yet I still feel sick and have these symptoms:
I feel like no one takes me seriously since I've suffered from health anxiety all my life :(. But I'm not a hypochondriac I have real symptoms that disturb me and make me worry. I've also been bit by many ticks this summer several of which were not found for days.
My doctor says the muscle twitching, fatigue, and mental cloudiness along with memory issues are due too anxiety and I've been given Zoloft along with a clean bill of health. Maybe it is all anxiety? But it just came on and I don't feel anxious yet I have all these symptoms.
Anyway what should I do? Am I just being silly perusing these symptoms?
I've attached my blood work with the Lyme test results.
The reaction you got from that doc, while well-meant, is not uncommon. Docs who do not specialize in Lyme and take a more progressive approach to diagnosing and treating Lyme, will react just as this doc did.
The tests you were given are standard tests, but unfortunately they are not very accurate, and the longer you have been infected, the less likely you are to show a positive result.
If you go back to the earlier posts here in which we responded to your initial posts, you will see the suggestion and explanation of finding a Lyme specialist. You'll see the term LLMD, but it is not a formal title like MD ... it's patient slang for 'Lyme-Literate MD', meaning a doc who goes beyond the approach this doc took with you.
In the earlier posts to you here are detailed explanations of how to find an LLMD. It should not be necessary to keep looking for a doc who understands, but that's just where the medical profession is right now.
I didn't know about Lyme when I got sick, and had no idea what was wrong with me. I went through more than 20 MDs before one of them ran the same tests you have had (above). I was lucky, because although I had been very ill for a year, my immune system was still producing antibodies which could be measured by the test, and so I got a positive result. It often happens that the tests are false negatives, meaning they say 'no infection' when there really IS an infection, because the tests are very imperfect.
Non-LLMDs do not know or understand this point, which is why finding a Lyme specialist (LLMD) is so very important. LLMDs use different tests, which are more accurate, and LLMDs also know that the tests are just one factor in making a diagnosis, not the final word. Your history and symptoms are just as important as -- or even more important than -- the tests your doc gave you. LLMD know all this.
That is why, in your situation, I would find an LLMD *without delay.* Time is very important in getting a diagnosis, because the longer you are infected, the harder it is to cure. An LLMD would also determine whether to test you for other diseases that the same ticks also carry about half the time. A nonLLMD would not likely do that. You got pretty standard nonLLMD treatment from the doc you saw.
I just searched
and found lots of leads to patient-oriented Lyme groups that could help you locate an LLMD near you.
I know how hard it is to deal with all this when you feel so lousy and your brain is so foggy --- see if a friend or family member can help you find an LLMD.
But don't delay -- speed is important in a cure.
Let us know if we can help -- best wishes to you -- and DON'T GIVE UP.
If I had been tested at a regular lab, my western blot results would have looked exactly like yours. It seems to be completely negative. (While band 41 is usually the first antibody to show up with Lyme, it can also be caused by dental spirochetes, which are extremely common.)
However, when I did a Western Blot at IGeneX, it showed two Lyme specific bands on the IgM that the CDC ignores. Supposedly, our immune systems convert from making IgM antibodies to IgG antibodies within 4 weeks of infection. And yet I had been infected six years and zi only showed Lyme bands on the IgM. Seems my immune system didn't get the memo on how it was supposed to behave.
You definitely need to find a good LLMD, even if you have to travel to one. People fly in from other states and even other countries to see my doc. I am lucky in that I only have to drive an hour. A good LLMD will know how to read an IgeneX Western Blot result, and possibly also other tests, such as a PCR (which looks for Borrelia DNA) and a CD57. Also, a LLMD will know to look for possible coinfections, such as Bartonella, Babesia, Anaplasma, Ehrlichia, Mycoplasma, and a few others depending on your location.
Recently we had someone here on the forum who was told by an infectious disease doc that he didn't have Lyme, but he did have Brucellosis. It seems that the Brucella parasite can also be transmitted by ticks and has a long, ugly list of symptoms that greatly resemble Lyme (and MS and a few others). You might want to ask for testing for Brucella as well.
There are definitely some "sketchy" doctors out there claiming to treat Lyme. But don't trust the word of mainstream docs. They are taught that LLMDs are all malpracticing quacks...and this because they dare to believe us when we say we are still sick, and they are willing to treat us until we are well. A more reliable source is ILADS or a local Lyme support group. Local groups can be really helpful as they know who is good and who isn't.
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