New Test Results, Need Some Help

[crypt0cu1t]

I just found out that I have high AChR binding antibodies, salivary protein 1 antibodies, high ammonia and SIBO.

Is this consistent with ME/CFS or is it an entirely different diagnosis that could be possibly treatable?

I feel like this has to be some sort of encephalopathy/encephalitis due to the symptoms and brain dysfunction I am experiencing.

My illness seems to follow a relapsing remitting pattern every 2 weeks.

Symptoms:

1. Severe mental fatigue (sleeping 20 hours a day)
2. Severe memory issues
3. Cognitive impairment
4. Visual snow
5. Blurry vision
6. Headaches in the back of my head
7. Dry eyes
8. Dry mouth
9. Lightheadedness

 

[Diwi9]

Sorta looks like signs of Sjogren's Syndrome, but someone else might have other insight. Do you have POTS (there is a link to Sjogren's)? I think there was a thread today where someone was talking about visual snow...I don't know what that is, I just have light sensitivity, afterglow, and spatial/depth perception issues.

 

[Crash Davis]

• Severe mental fatigue (sleeping 20 hours a day)

• Severe memory issues

• Cognitive impairment

• Visual snow

• Blurry vision

• Headaches in the back of my head

• Dry eyes

• Dry mouth

• Lightheadedness

These are all potential cholinergic problem symptoms. Do you have decreased sweating? Flushing or red blotchy skin sometimes? Do your pupils seem large sometimes and/or sensitivity to light? Rapid heartbeat?

Any meds you are taking, ask Google if they are anticholinergic and avoid if they are.

 

[WinterWren]

“Anti-AChR antibodies are highly specific for MG because they are not detected in healthy individuals and are only rarely present in patients with other autoimmune or neuromuscular disorders (see below).“ - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3505488/

I’ve never seen anything about AChR antibodies being high in ME but maybe there’s something I don’t know (there’s a lot I don’t know). To me this really looks like you could have Myasthenia Gravis and possibly Sjogren’s as well. MG can cause muscle eye weakness and vision problems too. I hope you can get a specialist helping you with those results and maybe some actual treatment!

 

[crypt0cu1t]

Sorta looks like signs of Sjogren's Syndrome, but someone else might have other insight. Do you have POTS (there is a link to Sjogren's)? I think there was a thread today where someone was talking about visual snow...I don't know what that is, I just have light sensitivity, afterglow, and spatial/depth perception issues.

Dr Chheda believes that if we correct my SIBO issues, my autoimmunity will resolve on its own.

So hopefully thats the case I dont know how much more of this I can take..

 

[Diwi9]

Dr Chheda believes that if we correct my SIBO issues, my autoimmunity will resolve on its own.

So hopefully thats the case I dont know how much more of this I can take..

I had a 10-day remission after treatment for SIBO last year with Rifaximin. Hang in there.

 

[crypt0cu1t]

How long did it take to notice a difference?

 

[Sushi]

I had a 10-day remission after treatment for SIBO last year with Rifaximin.

I also got remission from migraines and sinus infections from rifaximin--lasted a couple of years.

 

[kangaSue]

You would want to rule out LEMS (Lambert Eatons Myasthenic Syndrome) here too as it can have an overlap with ME/CFS symptoms and can have high AChR binding antibody finding.

Sjogren's and anti-NMDA receptor encephalitis can have some symptom overlap here too and it's not uncommon to have more than one autoimmune condition so they could all do with being ruled in or out in case there's immunomodulatory treatment options you can try if that is what your condition is.