Reassurance

[Nadja]

I have followed this board 2 years, and my husband has tried AP protocol previously. His story is he
went looking for a diagnosis for several years for symptoms of fatigue, malaise, morphed into continued extreme fatigue. Background whisper of joint pain, almost not noticeable. This went on like this for several years. EVERY lab result, and inflammation markers normal. No inflammation, ESR, SED rate, etc normal. Finally, he was checked for autoimmune diseases, and the only marker that showed up was anti-ccp of 250, RF and all other autoimmune tests normal. Also tested for Lyme, negative.

We thought would try AP to see if the fatigue would go away, since positive anti-ccp can relate to dental infections, of which he had for several years. Autoimmune diseases run in his family, MS and ulcerative colitis. Rheumy would not prescribe minocycline, GP knew it was used as a DMARD and prescribed The Harvard Protocol (I had heard and researched the Brown protocol on your board), so we actually did MWF x 100. 3 months in he stopped because of no progress with the fatigue. See now it was too soon to give up. Joint pain started after stopping the protocol, surprising because did not have anything to speak of before starting AP protocol. Did extreme vegan diet, pain left, fatigue persisted.

This time, started with Harvard protocol (big mistake I know)….1st 3 days herxed, extremely exhausted, flu like symptoms. This lifted, then back to usual crappy feeling. On 7th week, herxing started again (no changes in protocol) with extreme exhaustion, fluish feeling, very weak. Decided to do wash out for 1 week and go to MWF 100. Will start that next week. In the meantime, he has been off minocycline 4 days, and still herxing. New symptom is joint pain now very noticeable, especially hands. Similar pattern to when he went off minocycline (Torrent brand both times) last time, joint pain started after stopping minocycline, even though he had not experienced pain before starting the protocol. Going to keeping on with protocol, but this joint pain a little disconcerting. Been doing the lemon/olive oil drink, liposomal glutathione, lots of water, green tea for detox. He has been dealing with this fatigue for over 10 years, very fortunate that he had basically no pain to speak of, only the fatigue, which is why we decided to give the protocol another try, to see if that will go away. Just want to reassure him he is on the right path.

[Mountains]

Hello there Nadja! Good to see you on the site. After trying so many things, I’m glad to see you’re giving AP another chance. So interesting about the pain starting up when he is on the AP. Maybe it’s stirring up deeply imbedded Mycoplasma? I would imagine the fatigue is partly due to his immune system constantly fighting whatever infection he has had for so long. Keep us posted on his progress!

[Luck20]

This sounds pretty complex. Do you have a good functional medicine doctor?

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

[Nadja]

We are considering testing for Lyme. How long do you need to be off antibiotics before testing?

[Spiffy1]

I was told two weeks. Some say you don’t have to get off antibiotics but Igenex seems to prefer it that way. I had no side effects from taking a two week break.

Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWF

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