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@jenniferhunter

@windyshores @mahenoor108 I wanted to share some testing information for Lyme Disease. The Western Blot test isn't very accurate and can give a false negative missing a Lyme diagnosis.

Here are a few links to information about Lyme.
The doctors who are the experts at treating Lyme are in the ILADS group. The Igenex lab has more accurate tests. https://igenex.com/ Lyme destroys white blood cells that are your immune system.

Lab in Germany https://www.arminlabs.com/en

Here is a link to ILADS (International Lyme Disease Association). https://www.ilads.org/patient-care/ilads-treatment-guidelines/

Here is the Lyme treatment guideline
https://lymediseaseassociation.org/wp-content/uploads/2009/08/BurrGuide200810.pdf
Here are many patient success stories.
https://igenex.com/igenex-success-stories/
It seems that symptoms could be so many different things. Windyshores, You're right in that a patient needs to be in front of a doctor who understands these issues. One suggestion would be to contact the testing labs, and ask for names of doctors who are sending in tests or in the case of Lyme, contacting the ILADS group may help find a Lyme expert.

Mahenoor, when I read your description of stiff rigid muscles, it reminded me of a dog I had who did get Lyme disease. He became stiff and kind of spastic. The problem with Lyme disease is it mimics so many other diseases, and it is not just one infection, but a group of infections they call co-infections, and each would be treated with different antibiotics. The Lyme treatment Guide link explains a lot of it. Lyme can be cured with long term diligence with a specialist. It may be worth looking into this in case you find a diagnosis and possible cure; otherwise, it could be ruled out.

These symptoms could also mean different things to different patients depending on their personal experience. It does help to learn from other patient's experiences. Doctors are like detectives, and their opinions are also influenced by their own specialty and what they looking for, and they do try to rule out some possible reasons for symptoms. A different doctor may look for something else. Have you spent time outdoors where you could have been exposed to ticks in tall grass, brush or wooded areas?

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Replies to "@windyshores @mahenoor108 I wanted to share some testing information for Lyme Disease. The Western Blot test..."

I gave info on the fact that testing is interpreted differently by different doctors. Number of positive bands (CDC and most docs) versus bands specific for Lyme (LLMD's, ILADS, Igenex et al). A "Lyme literate MD" may also read tests as negative, but they treat anyway based on symptoms and history, right or wrong.

I hesitate to recommend anything honestly. I spend 6 years being treated by a Lyme doctor and the treatment should have been stopped. The antibiotic triggered lupus and affected my gut and immune system so that I have multiple food sensitivities.

So I posted in a neutral fashion. For some, three weeks at a certain dose of, say, doxycycline, might not be enough to avoid chronic problems, but over the years I watched in wonder as so many friends have actually gotten better with that regimen. In the end, I accept my chronic symptoms- better than the meds- and I wish I had stopped sooner.