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Next month will mark 10 years that I have been on minocycline. I am grateful every day for finding this treatment, and the impact it has had on my quality of life.
I had the same rheumatologist for 9 ½ years, but she retired last winter. While she never believed in the antibiotics, she wrote the prescriptions for me which allowed me to begin the protocol, and stay on it.
So last March I started with a new rheumatologist. I liked him – he is kind, and smart, and thorough. He was surprised at what I was taking but he knew my former doctor and he also willingly wrote the prescription. I had a 6 month follow up with him on Wednesday. He was joined by a University of Chicago graduate medical student. They looked very closely at my hands, feet and other joints. He was, again, surprised that I was doing so well on so little medicine. His conclusion: maybe I don’t really have rheumatoid arthritis.
Of course he never saw me when both shoulders were so sore that I could not comfortably move them, and developed frozen shoulder. He didn’t see me when my knee was so inflamed I didn’t know how I would walk down the aisle at my daughter’s wedding. And he didn’t give me the steroid injection to deal with the inflammation and swollen joints in my hand.
He acknowledged that the x-rays show real bone erosions in my hands. And he said there was no reason to ‘rock the boat’ so he wrote me a new prescription. But if I am doing this well on only minocycline then I probably don’t have RA. It couldn’t possibly be true that I had/have RA and minocycline is actually a great treatment.
I have read so many stories from others about this happening – but I was still surprised to have it happen to me. I shouldn’t have been, but I was.
So keep the faith, and don’t let the medical establishment discourage you. There is better health to be found out there.
Bonnie Lou
RA 02/07,AP 10/07
Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!Thanks for sharing! Wow!
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, minoMWFBonnie,
A great story. Congratulations. How much of supplements do you take?RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygousHis conclusion: maybe I don’t really have rheumatoid arthritis.
Classic moment for sure and agree this is such a great story! Gave up counting how many times people have said this here – the SD story in the Henry Scammell book was a similar classic tale. Oh dear – I guess there are just a lot of misdiagnosed AP patients? 😂
It’s been 11 years for me of seropositive RA (have had very elevated ANA, RF, anti-CCP, SED, CRP) and I’ve had numerous x-rays. While I’ve lost cartilage in my knees, various orthopedists have recently commented that I don’t have typical RA erosions in my hands or feet. Apart from the rickety knees that may require replacement (my Dad had severe bone-on-bone osteo) and difficulties getting my thyroid balanced due to the occasional flare, there are no visible signs of RA from the outside or inside.
Guess I can’t have had severe RA either, Bonnie!
I just don’t understand why every rheumatologist would be practically required to try antibiotics first. If you go to the doctor for most every other thing they will try antibiotics barring some. For instance, my husband went to the doctor with a congested cough. With no medical tests he is given an antibiotic and a steroid pack. I go to this same place feeling really low with a low grade temp., puffy elbows, fatigue, rashes, hives, etc. Feeling much worse than my husband. I am told, “You middle aged women just get your autoimmune diseases. Just go see a rheumatologist after Christmas.” Wow. It was around Dec. 10. They did not care how bad I felt. Did not try antibiotics to see if I felt better, no steroid pack to get me through the holidays. I did find a doc to start me on Doxycycline somewhere else. But my point is there seems to be an interest in so many medical conditions as far as trying to actually route out bacteria, why on earth do they throw their hands up when it comes to something as serious and Chronic as AI diseases? I felt like my husband got so much more respect, like he was worth saving. And, me, if I were intent on destroying myself there was just not much they could do for me. I don’t know. There is just so much I do not understand.
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, minoMWFI have been taking minocycline for 6 weeks now. I am concerned that I still see, have so much swelling of my hands after just minor using of them each day. Each joint in each hand, especially thumb pain. Also the disfigurement going on right before my eyes daily. I am taking 200 of the Minocycline, Minocin has to be Ok’d by insurance and special ordered by pharmacy. My primary care Dr gave me 3 months to try. My rheumatologist does not agree with this treatment but has a go ahead and take for 6 months attitude. Then Come back see me and he thinks at that time I will do it his way. Should I start taking plaquinil with the Minocycline to try to stop the disfiguring of my joints or peruse the Minocin brand name? How long before I see some relief Or the die off of micoplasma bacteria? Maybe 3-4 months? I do take Diclofenac for inflammation. My anti-inflammatory diet has helped with both inflammation and energy that has been hopeful.
Thank-you for sharing your story. Did you start the plaquenil the same time as the Minocycline? You have taken both for 10 years?
Hi 6572Sha. Yes, I have taken both the minocycline and plaquenil for 10 years. But I take very little of the plaquenil. In the beginning, my rheumatologist had me taking 200mg pills twice a day. I quickly balked at that because I only weigh 115 pounds and I thought that dosage was designed for someone much larger. She cut me back within a few weeks to 300mg/day. And over time, as I got better, I took less and less – until now I take 1 pill 2 or 3 times/week. My doctor was convinced I was doing well from the plaquenil. She ever believed the minocycline made any difference – but I never told her how little plaquenil I was taking.
Plaquenil is not a terrible drug – it’s one of the more benign RA medications, and it may help you. But it won’t be a quick fix either – it takes time. You have only been on the mino for 6 weeks and it is way too early to see improvement. What does your rheumatologist want you to take? Would he be willing to give you some steroids for a short while to help control the inflammation, and help the mino do its job? Have you read Dr. Brown’s book? That’s a common way to approach treatment and might help you if you are really suffering in your hands.
And Linda — send me a private message and we can chat about supplements — or maybe open another thread. I have tried many, and cycle some in and out. I wish I knew what was really helping me, but I do know what I believe in, and there are a few more I would like to try.
Bonnie Lou
RA 02/07,AP 10/07
Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!
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