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Do any of you have these severe muscle symptoms?

Tammy

Senior Member
Messages
2,189
Location
New Mexico
Baseline supplements: Zinc sulfate, B12 (adenosyl and methyl forms), Vit. C

Heavy metal detox smoothie: Spirulina, Barley grass juice powder,Dulse, Wild Blueberries

Anti-viral diet: No Wheat (gluten), No Eggs, No Dairy. Low fat because what I learned is the more fat in the bloodstream the harder it is for the WBC's to get to the virus. Also, too much fat causes a sluggish liver that is already struggling getting rid of viral toxins. The virus loves to hide in fat cells.

Anti-virals: I do not take all of these at one time as I like to rotate but most of the time I have at least 2-3 in my system

L-lysine
Licorice root
Cats Claw (one of the best anti-virals there is)
Propolis
Lemon Balm
These are the main anti-virals I've taken although there have been others as well. I have never tried prescription anti-virals mainly because I never could find a Dr. that would work with me in doing so.

Ever once in awhile I will sprinkle in other immune supporting supplements if I am able to.



I was a pretty sick puppy when I started on this strategy and I wasn't even able to prepare healthy meals for myself that well so I just did the best I could. Now it's no problem.

I found out quickly that I had to start with low dosages of supplements. The herx or die off..............or whatever term you want to use was sometimes brutal. I learned to really listen to my body and adjusted dosages of the anti-virals accordingly.

It took me around 6-8 months to even start getting glimpses of improvement. I had support of others who were also doing the same so it helped me to keep going

Fast forward: I've been on protocol for 8 yrs. and I'm so glad I stuck with it. I have tried a LOT of things over the years and this protocol is what works best for me. It's not a simple protocol and I really wish it was but it has given me enough quality of life to keep me in line with the protocol. Where I fall short sometimes is keeping with the diet.

That's pretty much it in a nutshell. There's probably things I have left out but wanted to keep it as simple as possible.
 
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ChookityPop

Senior Member
Messages
584
Too brain tired to read the whole thread again right now but @ChookityPop have you looked into Polymyositis?

https://www.hopkinsmedicine.org/health/conditions-and-diseases/polymyositis
I have did the myositis panel (not all antibodies I just learned but most) and all were normal. Should I test them again? My muscle weakness is so so severe.

I am having a muscle biopsy within a months time out of country, so this will hopefully shed some light on what is going on. Should have done it long ago. But Polymyositis make a lot of sense.. I also have Plexin D1 aabs. The study under is not autoantibodies but someone told me a researcher they talked to thought it could be related to our weakness.
Would love anyones thoughts on this and if it could be related indirectly to my weakness somehow?...

Identification of plexin D1 on circulating extracellular vesicles as a potential biomarker of polymyositis and dermatomyositis


Conclusion: We identified levels of circulating plexin D1+ EVs as a novel serum biomarker for PM/DM.
https://pubmed.ncbi.nlm.nih.gov/34297034/
 

Judee

Psalm 46:1-3
Messages
4,497
Location
Great Lakes
Should I test them again? My muscle weakness is so so severe.
I don't know. I'm sorry.

I think some of our muscle weakness is also related to lactic acid but I don't know the tests for that. I had low LDH (lactate dehydrogenase) on one test but it was one that was included in a package of liver tests I bought when I didn't have my new PCP and I haven't been able to find out if that is low when we are producing an overabundance of lactic acid but I have wondered. Just not smart enough to research it that well.

Have you seen the threads on lactic acid being high in PwME?

Edit #2: I wish there was a supplement we could take to lower lactic acid.
 
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