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Brie (@brie87144)

Autoimmune diagnosing problem

Autoimmune Diseases | Last Active: Dec 4, 2018 | Replies (211)

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@soitis4590

I’ve struggled with many multi-system symptoms. I have been given a diagnosis for some (autoimmune: antiphospholipid antibody syndrome- causing a stroke, hypothyroidism, conversion disorder(eyes), depression, anxiety, OCD, arthritis (multiple joints), carpal tunnel syndrome…
Others remain a mystery.
All of the above, plus all my undiagnosed conditions (urinary incontinence, extreme fatigue, fainting, nausea, vomiting, pins and needles of both hands, sweats…) fall under the umbrella of chronic Lyme, or as the medical community calls it:
Post Treatment Lyme Disease Syndrome. (Still true if you were never treated) For me the Lyme disease (and bartonella, babesia ) diagnosis was the connecting thread. Lyme is called the “great imitator”.
As already said, each of my specialists looked at his or her body part. No one looked at the big picture.
The current blood tests for Lyme are generally unreliable, making it difficult to diagnose. Many doctors too, are unfamiliar with the condition. I am not trying to diagnose you as I am not qualified, but perhaps Lyme or another tick borne disease should not be overlooked. May I suggest the ILADS website (sorry I don’t know how to add a link here -cognitive -memory problems as well)
Good luck I hope you can find some answers.

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Replies to "I've struggled with many multi-system symptoms. I have been given a diagnosis for some (autoimmune: antiphospholipid..."

Thanks much. I grew up in Lyme country and once in a while I think abput this.

It is also ironic that I am on anti malarial, given I spent 6 summers getting bit by mosquitos in the subarctic.

This weekend I learned I am B6 deficient, which is an indication of inflammation and can cause bot muscle and nerve pain. I started on B6 today and hope it helps. All my joints are worse tthan usual, as well as my neuropathy.

I send best wishes on your diagnosis journey. It seems sometimes that only alternative health providers look at people more holistically.

Kind regards

Sorry to hear about your massive, daunting challenges.
I have a question about some of the wording: Are you saying that the antiphospholipid antibody syndrome was concurrent with the other listed conditions, caused them, or was a consequence of Lyme Disease? Curious since antiphospholipids show up in autoimmunity as a co-factor a lot, as you likely know.
I know personally one man who went through a maze of issues as broad as what you list and was eventually diagnosed with advanced Lyme. It probably does not have have a high enough profile. What treatment are you on if I may ask?

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