My New Treatment Strategy (Supplements were too helpful)

[sometexan84]

Update

Got another crazy test result back today. High Actin (Smooth Muscle) autoantibodies.

But the thing is, I tested this months ago and it was normal. Since stopping meds, I may have to retest everything.

 

[lenora]

Hello @sometexan84. I didn't want to read the entire thread, but did you ever see a neurologist and rheumatologist?

I know the hospital you're referring to, but can't give you the names of doctors at the present time (all have retired). I would definitely call different offices there, and yes...it can be frustrating, but try to track down the name of someone specializing in ME or a really good, basic neurologist to start with. This may take as much as 2 weeks, but try to talk to either a Nurse Practitioner, or Physician's Assistant and tell them you need someone who can specialize in more than overall illness. It's going to take time and effort, but is worthwhile if you do get the name of someone.

Rheumatologists are often good sources for our problems, too. But bear in mind that a neurologist will test you for many illnesses, not just one.

Alopecia an also be caused by the large no. of vitamins and other meds, supplements, etc., that you are taking. I would definitely slow things down until you have a definitive answer that nothing else is wrong with you, especially if unknown problems haven't been checked for. You're presently complicating matters unless you've fone this route.

By the way, I never found my answers at Southwestern, but at Baylor Downtown and it took a long time to find just the right neurosurgeon (in my case). ME was secondary to other problems. Take care. Yours, Lenora.

 

[sometexan84]

Hello @sometexan84. I didn't want to read the entire thread, but did you ever see a neurologist and rheumatologist?

Yes, I've seen both, and am actually about to start seeing a new rheumatologist.

Same here, about Southwestern. I was so disappointed.

 

[Judee]

I'm glad you're starting to hopefully get some clues on what might be going on with you.

 

[lenora]

Keep going, sometexan84, at least you're aware and are heading in the right direction. I'm sorry that things haven't changed at Southwestern....I thought perhaps it was just at the time I needed assistance. Busy place...too busy, it seems.

If I ever hear of a local specialist who may be of benefit to you, I'll be sure to let you know. A rheumatologist is also a good choice. What did the neurologist and other rheumatologist say? Yours, Lenora.

 

[Gingergrrl]

I'm actually still taking my thyroid meds. I can't have my TSH levels going way back up.

I'm glad that you decided not to stop your thyroid med. I remember that you once said that your Hashimoto's was gone (normal TSH, T3, T4, etc, and both autoantibodies gone) so you would not want to mess this up!

I think all this stuff was important, and helping. But w/out it, hopefully it leads to me getting IVIG. That's pretty much my goal.

I also hope that you will be able to get IVIG.

Update Got another crazy test result back today. High Actin (Smooth Muscle) autoantibodies. But the thing is, I tested this months ago and it was normal. Since stopping meds, I may have to retest everything.

Do you (or your doctors) understand why you would now test positive for this (based on the meds & supplements that you stopped)? Or do they think it was due to a different reason? I totally understand autoantibodies changing due to things like IVIG, Plasmapheresis, Rituximab, but not based on the meds & supps that you stopped. What do you make of this?!

 

[uglevod]

I'am afraid all those keto diets are just playing around cortisol(stress hormone) levels and its influence over the immune system.

 

[max_yazhbin]

Yes, I've seen both, and am actually about to start seeing a new rheumatologist.

Same here, about Southwestern. I was so disappointed.

@sometexan84

One thing I found useful is searching the entire labcorp or quest catalogue. That is how I found out about the 12 ANA's blood test and it ruled out all sorts of terrible autoimmune conditions for me.
https://www.labcorp.com/test-menu/search
https://testdirectory.questdiagnostics.com/test/home

I read books related to my condition with search terms such as "multiple chemical sensitivities" "chronic fatigue syndrome" "hashimotos" etc and various organs and tissues such as "gastrointestinal diagnoses" "immunology" "liver diseases" etc on book related search engines such as b-ok.cc, that website was a godsend. I talked with my doctors about various tests and did my own differential diagnosis and asked for all sorts of blood tests that were in the catalogues and gave my justification and he agreed to order the tests, which was unbelievably useful in ruling out all sorts of terrible diseases and giving useful information that they would have never thought to test for.

I am waiting for my liver biopsy results and am leaning towards aluminum poisoning as the remaining cause of my ME/CFS/MCS. Google is somewhat useful for certain aspects and Amazon is somewhat useful for some aspects of care, but they were insufficient for me and I resorted to b-ok.cc, medkoo, etsy, and contacting various geniuses willing to share their time and wisdom with me. And I am still not cured and I am still developing new strategies.

 

[sometexan84]

Do you (or your doctors) understand why you would now test positive for this (based on the meds & supplements that you stopped)? Or do they think it was due to a different reason? I totally understand autoantibodies changing due to things like IVIG, Plasmapheresis, Rituximab, but not based on the meds & supps that you stopped. What do you make of this?!

I will tell you what I suspect. And by suspect, I mean, I believe it wholeheartedly and not much would change my mind.

I believe I was keeping things in check w/ my meds. And when I stopped them, I opened up the flood gates.

I was taking things to...

• decrease intestinal permeability (leaky gut)
• improve the balance of my gut microbiome
• fight EBV and keep that in check
• strengthen my immune system
• repair DNA and mitochondria
• reduce inflammation and down-regulate inflammatory cytokines
• reduce free radicals and oxidative stress
• re-balance my DNA methylation
• support liver and detox
• support cellular energy production
• improve bone, skin, and cardiovascular health
• improve brain and nerve cell function

Imagine that all getting worse. I'm sure my infections are less restricted. There's even more demand on my already effed up immune system. And although my dysfunctional immune system can't seem to win the battles, it won't stop trying, and is still super active, and doing whatever it takes to try and win, even if the result is auto-antibodies that damage parts of my body.

If my DNA methylation has gone back to how it was before, then I have less regulation of gene expression, which can lead to a million problems.

Specifically though, the Actin (Smooth Muscle) antibodies can be caused by EBV, as seen in EBV-induced Autoimmune Hepatitis (which seems to be a new thing I have). So, w/ EBV no longer in check, I'm not surprised. Though, Coxsackie B3 can also cause these antibodies, which is another infection I have.

I'm sure whatever new issues and symptoms end up manifesting will likely not be from just one thing, but a combination. The root of it all though, my Enterovirus B infections. This was expected though. And my docs wouldn't know, I don't tell them everything. I don't want them getting mislead or sidetracked. I'm just hoping I don't get any permanent damage before I start a treatment.

 

[YippeeKi YOW !!]

I'm just hoping I don't get any permanent damage before I start a treatment.

I was thinking the same thing ..... but I dont think you will, you're too smart to let it go on beyond the event horizon ...

Your statement re not telling your Drs everything so as not to sidetrack or distract them totally cracked me up. That's such an elegant way of putting it, you Evil Genius, you !!!!

 

[sometexan84]

Your statement re not telling your Drs everything so as not to sidetrack or distract them totally cracked me up. That's such an elegant way of putting it, you Evil Genius, you !!!!

Lol, it's just faster and more efficient to keep things as simple as possible, and then let them do what they do.