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Dismissing doctors: How do you find a doctor who can help?

Bones, Joints & Muscles | Last Active: May 24, 2022 | Replies (102)
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@windyshores

How high is your ANA? ANA's that are low positive don't always mean an autoimmune disorder, and ANA can be elevated by infections.

Have you had a Lyme test? It needs to be Western Blot, not Elisa- you can ask for it. Quest testing is good. Doctors read them differently so I would make sure a functional doctor or doctor knowledgeable on Lyme interprets the tests.

I can relate to your journey but I stay aware that the need for a diagnosis is insurance-driven, and medicine is evidence-based unfortunately. My ANA was 1:5000 (approx.) at one point. My neurologist describes CSS but never uses the label. My rheumatologist diagnosed me with lupus but skin biopsy said dermatomyositis. Then said I was "MS-y." Then eye doc said he thought I had MS. I also had a positive Lyme test at one point. Honestly, I don't even care because unless my symptoms are life-threatening, I am not taking immune suppressants. I took antibiotics for a long time- big mistake. I took Plaquenil for a long time- until I got flashing lights peripherally.

The best approach seems to be a team with physiatrist, PT, OT and psychologist, offered at some rehabs and pain management clinics. I have found tai chi to be extremely helpful. I start a class with my body covered with pin pricks of pain all over, numbness and tingling, and can actually feel the sensations recede. I also get muscle contractures: my tai chi teacher can actually see them. My left arm becomes inches shorter than my right. Someone taught me where to press to release.

Functional medicine doctors are really good with these kinds of chronic mysterious issues. I understand the need for a diagnosis in order to be taken seriously. It should not be that way, but that is how doctors are trained: almost like recipes rather than a more dynamic way to think about the body. Of course there are great doctors who transcend that: the trick is to find them!

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Replies to "How high is your ANA? ANA's that are low positive don't always mean an autoimmune disorder,..."
Jennifer, Volunteer Mentor | @jenniferhunter | Apr 3, 2022

@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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