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Hi. It's been awhile since I posted. I have been debating getting off the minocycline for a few months now. I've been pain free for … I'm thinking it's been nearly two years. I had a bout of some joint pain last fall but I'd gotten a yeast infection and taken some diflucan… I think it was that… It went away very quickly. I've had zero pain. Not even a hint of pain. I think it's amazing. I just don't know what to do now. I have no health insurance, no doctor. I've seen a primary care doc that my children see in order to get the prescriptions for mino- which I then order from Canada. Is there some new research that says people in my position can actually get off the mino?
Thanks.
Jenn
Hi Jenn, always nice to see you back here. So good to hear you have been pain free for 2 years now! :dude: When are we going to read your testimonial?
It may be worth considering a break at least – how long have you been on the mino? Dr Brown suggested a rotation of drug at least every 4-5 years to avoid the possibility of the body developing tolerance to the drug. In your case, being pain free, perhaps a break rather than a change of abx is in oreder. My AP Doc and Naturopath (both in remission from different rheumatoid diseases) both try taking a break each year to see whether they can stop the abx altogether. So far, for them, the answer is no.
https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-Drug-5677
There are a few Lyme patients who have been told they no longer need to be on abx – but Lyme is a different kettle of fish. With you, it's straight RA, if my memory serves me correctly. If it were me, I'd not consider going completely abx free until and unless all my blood work had normalised – RF particularly. That was also what Dr Brown recommended. Any chance you can get some bloodwork done? Lynnie[/color]
https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-Continuing-43793
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)Hi, Lynnie-
I'm claiming to have PRA.. no tests were conclusive during my long search for an answer. My tests always indicated NOTHING was wrong. After being here for awhile, I began to accept it was PRA and I'm convinced that's what it is/was..
I also had brain fog- gone now. Fibro pains- gone now. Lots of tingling and numbness- gone now.
I feel so good. I don't want to lose that.
Thanks for your help. I'll keep thinking about things. Haha… it took me a YEAR to begin mino.. I guess I'll be mulling this over for a year.
I can't afford the bloodwork. I've been waiting, hoping Obama gets me that public option…
Jenn
Hi Jenn, that's great news!
Last time I talked to my doctor, he suggested as my joint pain continues to improve, I should consider dropping the Doxy dose down to either a maintenance dose or to zero.
He said some people can walk away from the antibiotics, others need to get back on them after being off & getting into trouble, others need to stay on a low maintenance dose for life.
No way to say without trying, in other words.
How much are you taking now, and how often?
Jenn – I didnt realise it was most likely PRA in your case, which is my diagnosis also. Difference is that my RF has always been high (except for the first couple of years when they thought I was making it all up and just a little “cracked”;)). If you have no blood tests to compare, then it might be an option to reduce bit by bit and see how you feel each time you lower the dose or reduce the days….maybe you could take that year to do that!:D Whatever you decide, here's hoping you continue in great good health. Lynnie
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)Hi Jenn,
It was so good to hear from you and to hear that you're doing so well, esp since your insurance situation has not changed. I know it would be nice to have lab confirmations that all is well, but even if they were, you would still have to decide whether you want to risk dc-ing the abx. I think you wise to think about it for a while. I'm not sure how I feel about tapering off slowly, tho, and I admit there are many here smarter than moi on this subject. But it seems like tapering slowly would give any little leftover bugs a chance to mutate into a more resilient form, by allowing mutated bugs to survive against a weaker and weaker opponent. Does that make sense to anyone?
It's impossible to know what these diseases will do next or why. I had a 5 yr complete, drug free remission from 1990-95. Like you, I was lovin life. I thought it was because I was living in temperate climates, AZ and HI, but now I'm not sure. A stressful event or illness could trigger another flare if you're not protected by abx, or even if you stay on the abx. Remember that 50% of the population has mycoplasmas, so you will constantly be exposed to the bugs that cause your immune system to overreact. But isn't AP supposed to retrain or rewire the immune system so that it doesn't respond in the same way? Or am I just making that up? :?Somebody smart please help here. Whatever you decide, don't kick yourself if sometime in the future you get another flare. I sincerely hope that you never have another achy joint or muscle again, tho!
linda
Hi Jenn- I am like you and struggled with the decision to go off the antibiotic. I was symptom free for a little over a year and was struggling with the antibiotics. I couldn't tolerate mino or zithro and was on doxy awhile but just didn't think it was doing anything and was feeling really normal. Then about two months ago I started feeling depressed and didn't know what was going on. Then a few weeks later, I started getting aching joints and fevers again. I started back on the doxy but have continued to go downhill fast. Now I've just finished a month of zithro, which is about all I can tolerate before my liver enzymes become elevated and I'm trying doxy again. Its very frustrating as in hindsight, I wonder whether I should have went off the antibiotics. My RF was negative too and all my numbers went normal except for my ANA.
I'm also now trying some homeopathic remedies (UNDA) and thinking about getting my mercury fillings out. I just want to find some solution to this situation. The longer I'm on an antibiotic, the worse I feel so I'm hopeful for finding a long-term solution but its hard.
I just wanted to give you perspective from someone who has tried going off. Good luck! Fran
Hi Fran,
I'm so sorry to hear that you're not feeling so well. I share your frustration as 1 month seems to be all my stomach can handle on the antibiotics. It's good that you found out that your liver enzymes became elevated, tho. I wish there was some kind of solution for those of us who really want to be on AP but can't. I hope this is a just a small bump in the road for you and that the doxy will help. Have you tried milk thistle for your elevated liver enzymes? I just posted some information to someone else about how it helped my liver.
It's great to hear you're feeling so well on AP – and for 2 years! It's a very personal decision…I've read some stories of people who went off it and stayed off it (with no return of symptoms) and others whose symptoms returned in time. I wish there was a REAL magic 8 ball to answer that question!
To Jenn & Fran – what sort of stomach issues were you having on abx? Are you taking probiotics and what happened to your stomach after one month?
To M – what is the normal maintenance dose?
To everyone – I hear stomach issues can occur starting out, but usually get better over time. What kinds of stomach issues are we talking about, how do you tolerate it and is this common or more rare?
Thanks! Sorry for all the questions.
Orchid wrote:
To M – what is the normal maintenance dose?
I don't think there is a normaal maintenance dose. My MD suggested I might want to consider going back down to 50 mg MWF, then maybe 50 mg 2x week.
I'm in no hurry to go off antibiotics. It feels like a security blanket.
Wow–I remember your initial posts here–your pain, frustration, and skepticism that this would work for you. How wonderful to see you at this point!
Sierra
Hi Jenn
Thats fantastic no more aches and pains and actually feeling normal again. I think if it was me I would wait about a year maybe if I still felt good and all blood tests showed normal. I would try without abx and believe it's all gone!
Best wishes
Rosemary :roll-laugh:
Linda- Orchid- I have tried milk thistle. In fact, I was on milk thistle when my liver enzymes became elevated. I took milk thistle the entire time on AP. I also take many probiotics. I did not have stomach issues but would react to minocycline in a way that Dr. S said I was just too sensitive for that antibiotic. That's why he switched me to zithro and then to doxy. I had a lupus-like reaction to it, according to Dr. S. My ANA also elevated after awhile on mino, but who knows if it would have elevated anyway, despite the mino. I get fevers, chills, very sick flu-like feeling, increased pain everywhere—beyond normal herxing—that went on for 2 years like clockwork. It got to the point that when I wouldn't take the mino, I would feel good and then when I would take it I was immobile and feverish. After two years of this, I just couldn't tolerate it anymore. We adjusted my dose and at one point, I was only taking half of a 25 mg capsule and still reacting really badly. After going off the mino, I went into remission and stayed there for over a year.
It is frustrating beyond belief and I am kicking myself for not staying on some kind of maintenance dose of something, but who knows whether this just was a remission on its own or drug-induced and would have come back anyway. There really seems to be no rhyme or reason.
I am trying these homeopathic remedies, which truthfully, are doing nothing I've been taking fish oil, turmeric, probiotics for years. I've also tried tons of other supplements that obviously have done nothing. I get regular acupuncture, eat a mainly organic, anti-inflammatory diet. I joke with my family that I'm the healthiest sick person I know! :blush: I'm sure you all can relate! Fran
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