Does AP work for Myositis?

[Luck20]

Does anyone know if AP works for Myositis?

In May of 2018 I was diagnosed with it and it showed I had muscle damage in my lab work. I thought I was just tired, but by Nov, it was harder getting out of a chair and my legs felt like jello going up and down the steps a couple times. Now in the last week, they feel so much stronger. It seems like I’m building muscle and my labs are 1/2 way back to normal! I’m overjoyed. Just the thought of going for a walk this spring sounds pretty exciting!

Could this really be the Minocycline helping with this too? It all came on at the same time. Maybe its connected?

Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

[Lynne G.SD]

I never really thought about it but you might be on to something as mino knocks down Interlukins that cause inflamation.I don’t know which one is involved with miositis but for SD it’s numbers 1 and 6.After 19.5 years on AP I doubt that any bug has survived.I do know that if I go without it for mare than a couple days tight ligaments/tendon rubs and burning pop up overnight.2 days back on it and I am fine again so I know it only works that way for me.

[Luck20]

Thanks Lynne for your reply. I’ll have to look up what your saying and research it. I really don’t understand myositis very well, even after trying to research it. At first, I thought it was a mistake, but when it got tired walking even a block, I reconsidered.

I’ve read autoimmune disease often ‘travel in packs’. I’m thinking, what if all the autoimmune diseases that appear at one time, all have the same underlying root cause? Knock out one and rest all start to fall down too? Thats an exciting thought…

Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

[lynnie_sydney]

Luck – you may want to check out the Research section on the main site here

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Luck20]

Thanks Lynnie for all the links. I really appreciate it!

Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

[Lynne G.SD]

Hi Luck
I had not looked at which disease you have,dummie me.Ligaments,muscles are involved in SD so it might not be miositis at all.Lack of ATP is often the cause.Fell like you are hitting the wall just by walking from the sofa to the kitchen?

[Luck20]

I got diagnosed based on labs, Ldh, ck and aldolase. They were all very high and kept going straight up until they leveled off in Oct, when all my symptoms started to improve. The dr wanted to do a muscle biopsy and I said no, but based on labs he still diagnosed it as myositis.

Last summer, just standing up to reheat food felt exhausting, that got much better but my legs still exhausted easily after walking much.

What is atp?

Its ok if I don’t have myositis. I’m totally fine with that! 🙂 I don’t feel I need a firm diagnoses to get better. I actually believe its a bit to my advantage in some sort of way to not fall in exact catagories. I keep telling myself “I’m different. I’m going to get better.”

Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

[Parisa]

Luck,
A myositis diagnosis can help you qualify for IVig which was very helpful for my husband. Keep that in your back pocket if you ever need it.

Parisa

[Luck20]

Thanks Parisa, I’ll keep that in mind. I don’t understand how the whole/diagnosing coverage thing works sometimes. Its a shame insurance isnt more user friendly.

Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

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