Do you just keep doing the same thing?

[Spiffy1]

I have been on AP for about four to five years now. I have zero pain on a daily basis. No swelling in joints. My last RA factor check was around 47 or so which was up from the previous year of like 37 which was up from the previous year of 25…which was my all time low coming down gradually from 71 in the past. Can I just keep taking my minocyclene forever and ever and ever because I still
Have an RA factor? I would be scared to death to stop because they say it is so hard to reign it back in the second time. Part of me loves staying on schedule because I feel like it holds back a potential flare. But then I just wonder if I will
Just stay like this forever. When people reach remission some people feel confident just quitting. I don’t somehow feel that lucky. My doctor seems to be fine with staying the course. But I am not in remission because I still
Have an elevated factor, right? If it would go away I would be more secure in looking at different options. I am not planning on making any changes but I just wanted to open a discussion about what others have done in the past and their opinions on it.

I guess to be less wordy…do we just continue AP therapy as long as our blood work shows these markers?

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

[Luck20]

I’ve read it’s really best to stay on AP forever. I guess some people can quit and stay in remission but I don’t feel that lucky.

I noticed you don’t have Olive Leaf Extract listed. I’ve had great results in it helping pain. I took a chance on it cause I read great reviews of people with RA using it. Maybe that might help bring down your numbers if your concerned with that?

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

[Spiffy1]

I had done this early on and cannot remember if there was a reason why I quit it. Maybe just got out of the habit. I keep my signature down there so I can remember what all I have taken. But for a year I have done nothing but minocyclene and LDN. I have just recently started a coconut kefir liquid probiotic and a multi with the correct folate and b12 in it. Also going to take a bottle of 200 micrograms selenium and one tablespoon of cod liver oil and some magnesium here and there. I am trying to get back a schedule of supplements. I moved across the country and it disrupted my supplements for sure. But I have never missed those two prescriptions above. Thank you for the reminder.

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

[mary77]

I recommend staying on what is working for you. I had to quit minocycline due to reactions from it…this after years of feeling much better and keeping things under control while on mino. I have worsened since stopping mino. Am trying to slowly re-start to see if I can get past the reactions.

I suggest you stay with your protocol. It is worth everything to stay pain free!
Mary

[Spiffy1]

That is what my doctor thinks as well. Thank you for your insight. Please keep us posted on your re try.

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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