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Today was my first appt with my rheummy since I started AP 2 months ago (which he did not know about). After reading several posts on here about other peoples experience, I was sure that he wouldn’t agree with my choice of treatment. Boy, is that an understatement! I didn’t think he could be so negative. He said all the things that other people have quoted their rheummy’s as saying: “not enough studies”, “treatment was used back in the 70’s & 80’s”, “not potent enough”, “antibiotics will not work for an autoimmune disease”…my favorite was when I told him my AP Dr has treated RA patients this way and some have gone into remission “well then I have to question whether or not they actually had RA to begin with”! His recommendation is that I go back onto the methotrexate and/or a biologic and that if I don’t, I will be in a wheelchair within 10-15 years, I’m only 29! Currently I’m taking 100mgs of minocycline (teva) MWF and 5 mgs of prednisone a day as well as fish oil and ibprophen as needed. My AP Dr suggested I do the clindy IV’s. I was able to find someone close to me that can administer the IV, I just need to call my AP Dr tomorrow and order the supplies. Like I said, I’ve been on the oral ap for 2 months and have not noticed any changes. I’m curious as to how many of you with RA have done the clindy IV’s and what was the outcome? How long did it take for you to notice any changes? Thank you in advance for your responses!
RAinPA wrote:my favorite was when I told him my AP Dr has treated RA patients this way and some have gone into remission “well then I have to question whether or not they actually had RA to begin with”! His recommendation is that I go back onto the methotrexate and/or a biologic and that if I don’t, I will be in a wheelchair within 10-15 years, I’m only 29! Currently I’m taking 100mgs of minocycline (teva) MWF and 5 mgs of prednisone a day as well as fish oil and ibprophen as needed. My AP Dr suggested I do the clindy IV’s. I was able to find someone close to me that can administer the IV, I just need to call my AP Dr tomorrow and order the supplies. Like I said, I’ve been on the oral ap for 2 months and have not noticed any changes. I’m curious as to how many of you with RA have done the clindy IV’s and what was the outcome? How long did it take for you to notice any changes?quote]Hi RAinPA,
Well, sounds like this rheumy is a scare-monger or a prophet? This is medicine at its worst, making proclamations to scare and coerce patients into a particular treatment. 🙄 Fortunately, you’ve had time to research and make your own informed decision on this.
There is such irony in the statement: “well then I have to question whether or not they actually had RA to begin with,” because if this is the case, then thousands upon thousands of patients who have gone into remission on abx therapy since the 1940s have been misdiagnosed by incompetant rheumies ‘proclaiming’ incorrect diagnoses and can only imagine how many didn’t find AP and were put on rheumatologic drugs for life for no good reason. 😆 Honestly, the rationale used by these guys is pretty laughable.
I loved the story in The New Arthritis Breakthrough of the Scleroderma patient who went to a rheumy and shared she’d got to remission with AP. He said the same thing, “Well, you must have been incorrectly diagnosed and didn’t have SD, at all, because there is no medication that can reverse this disease.” Her response was that HE was the one who diagnosed her originally! What a hoot, eh?
Two months in is still really early days, RAinPA, and the 6 to 8 month mark is when there should be some sign of improvement before going back to the old drawing board. I herxed madly for the first three months and had scary elevations in all my labs to boot. After that period, however, my labs began coming down and I reached the 50% improved mark by the end of year one…I was very, very severe at the outset. Brown shared many times that it can take 2 to 5 years for remission of labs and symptoms to occur in some folk with RA. If you have watched the Dr. Brown video, the bone scans he shows of a patient over the course of 3 years while on AP speaks volumes. This is a slow therapy and it might take some tweaks in protocol along the way, but it’s a journey worth taking. Even if one doesn’t believe in infectious causes, the cyclines have great immune-modulating and joint protective effects. 🙂
I haven’t had IV clindy, myself, but have been around this forum for several years and the IVs can provide a great boost to the therapy. Of course, there may be some herxing a week or so after the 5 day series, but it is well worth giving them a go to see how one responds. I wish there had been a doc in my state who provided the IVs as I would have tried them, but in all honesty I was so sick in the beginning, I would have had to have been airlifted to another state for the treatment – there wasn’t one part of my body that didn’t hurt.
I hope others who have had the IVs will chime in for you to share their experiences, RainPA, and good luck with your IVs, should you choose to try them.
I had a week of Clindy at home a couple months ago, and I felt better that week & it seemed to help some of my swelling. It seems to have helped a lot of peple here, so I wanted to try it too. I am starting on my 5th month of minocycline and I can’t wait to get to 6-8 month mark and look back and hopefully see some positive results. I can’t say what the Clindy did for me, but I can say it did not make me herx and it did make me feel better than worse. I hope the best for you!
Hi there – I have RA and have also been on AP for two months. I have had RA for a long time. I have not had IVs, but am seriously thinking about going to see Dr S with the hope that he might recommend them. I herxed badly the first two weeks on Minocin and then had a week where I felt like a new person. Unfortunately since then it has been mostly downhill. What I mean is that I am no longer noticing any major benefit of taking the drug. I’m starting to wonder if I need a larger dose.
Personally the biggest factor in controlling my inflammation seems to be very carefully controlling my diet to remove all starches. I have found that dairy and nightshade (tomato, potato, eggplant) also cause major inflammation.
FWIW – I have found supplementing with Vitamin E works better than fish oil for calming inflammation.
I hope you have better luck with this treatment.
Hello RAinPA and others who might read this post,
I have RA, I was diag. almost two years ago. I was getting bad really fast. I had to wear braces on both my wrists, my ankles, sometimes a knee or an albow. If I used my hands for anything, like cutting food with a knife, putting dishes into a cabinet, the next day I could scream from the pain it was so bad, I was so scared, but I did not want the strong meds, that my doctor wanted to put me on. With a LOT of research, I found this site and the Rheumatic Support site and found out about AP, I read the book, and it made sence to me. I then went to Iowa, to see Dr. S. I had the week of IV’s, and started oral mino. For the first six weeks or so, I was worse, then I started feeling better, and I have never had the SEVERE pain again, only mild pain and tirdness, etc. I have had times when I felt worse again, then feel better. I returned to Iowa for another week of IV’s last April, I couldn’t tell much difference at the time, but I can tell you that now I feel ALMOST normal again. I really feel, that the IV’s were a good boost, to the oral mino. I hope my story can help others, feel hopeful.
I know not all people have the same results, as soon as I did, and it did take almost two years to get to this point. But I know AP worked for me, because I did nothing else different except the AP. and I am better……….It does take time, you have to give it longer than a few months…..
Judy
I am on my 6th year of AP. The first two years were rough, UNTIL I finally got the clindy IV’s. I had significant improvement. I did the weekly series then followed up with bi-weekly for about 2 months, then every three weeks for another 2 months then went to monthly for about 3 months. I have done booster IVs when I felt like they were needed. I was very lucky to find a dr who is close to me, listens to how I feel and does them in her office. I never have to argue to get them. If you are around the Houston area let me know and I can forward her info.
Diane
Hi there!
I haven’t been on this site for a long time now as I very seldom feel even so much as a “twitch” in any of my joints.Well, let me tell you one thing. The Rheumy that diagnosed me was very negative and told me the same story…wheel chair in 5 years…window of getting control of disease with Methotrexate..blah, blah blah…
I never went back to him as he was more negative then myself – who was actually the one in major pain – not him!
He made me very angry and I thank him for that! Yes! As he was the reason that I got moving and researched all and everything about the disease and I found Minocycline as my treatment of choice.Bottom line…I NEVER took anything else but Minocycline (just the generic kind and never the brand either).
Now, almost 5 years later, RA is so much as non-exist to me!!!!Here’s the quick run down:
major joint pain, swelling, morning stiffness and all the good stuff that RA brings with it,in hands, wrists,elbows, feet and occasionally very bad in knees, feet and jaw
I went on Mino 2 month after onset of RA . I got my Primary care Physician to prescribe it at first and then later on found my Rheumy through this site, who keeps prescribing it to me. My Rheumatologist told me the same thing but at least in a nicer way and respected my decision to stick only to Minocycline. (By the way…he says I am his best patient now as far as it comes to RA.)The first year I took 2x100mg Mino(morning and evening) every day and Ibuprofen when needed and I didn’t need NSAIDS anymore after about 3 months as I was able to sit out the pain. I sat it out if I could, as I felt that it is better to interfere the least if possible.
After one year and almost free of pain except my wrists, which were the worst affected, I lowered the dose to one 100mg Mino half hour before bed time every day (<– I feel the timing also made a difference)
This is the dose I am still on (I just skip it when I drink alcohol occasionally when going out or party etc. or when I plain and simple forget it)
Clinically my RF and Anti-CCP was gradually dropping until my RF went into negative about a year ago. Anti-CCP keeps dropping still and… I HAVE NO DOUBT AT ALL THAT I AM GOING TO REACH ZERO IN ALL MY BLOOD WORK.
Which techincally would mean, that the disease is gone (not only remission). ➡ That is what I go for and nothing less!!! 😀 The rest of my bloodwork is totally in the normal.A few things I did in addition to taking MInocycline: exercise my joints when they hurt most <–hard to do but moving is key!
I went to play tennis when my wrists hurt and went horse back riding when all else hurt…it’s the fun that gets you going, even if it’s just a 10 minute “Crazy-Dance” in front of the mirror with your most favorite music to get the moving done…DO IT !
I did the Lemon -Olive oil -Apple juice drink when things where still bad, at least 3-4 times a week fresh fruits and veggies thrown into blender with a good natural fruit juice and enhanced with a packet “Emergen-C”-powder ( I made this a meal replacement sometimes). Lot’s of unsweetened tea…green,black,Peppermint,Rosemary,Lemon balm, Sage…mix it up but don’t drink flavored teas…use natural teas! I grow Sage, Rosemary, Peppermint and Lemon balm myself. I like hot milk with some Turmeric powder and honey as well.
I almost stopped drinking Sodas as the ingredients seemed to aggrevate things. I naturally eat a healthy diet with only brown rice, whole grains, lots of veggies, moderate meat consumption, very little fried stuff…but… I love coffee and my sweets..cakes, candy, chocolates you name it! I just cut down a little on these things..yep..guilty as charged!
But the most important thing I ALWAYS did is to have absolutely no doubt that this isn’t going to get better. It never even so much crossed my mind and if you see me now you would never guess that I was once not even able to get out of bed because of all the pain. RA is pretty much gone from my mind again as I am busy with my life.
I hope my own story helps a lot of you to cope with what you are experiencing and not EVER give up or even think that you can not get better! It just takes time..that’s all!roserdRA – thank you for stopping by with such an uplifting post! 😀 😀 😀 Would you consider being featured some time in our e-bulletin’s Remission Corner? And, of course, we’d love a testimonial from you any time you feel ready……it is so important that we keep those stories current, so folks around the Forum now can see they are not just “historical”. 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)@lynnie_sydney wrote:
roserdRA – thank you for stopping by with such an uplifting post! 😀 😀 😀 Would you consider being featured some time in our e-bulletin’s Remission Corner? And, of course, we’d love a testimonial from you any time you feel ready……it is so important that we keep those stories current, so folks around the Forum now can see they are not just “historical”. Lynnie
Oh of course I don’t mind. I definately would like to do that. I am hoping to post with the news that all my so called auto antibodies are finally ZERO. 😀
I have been scrutenizing the medicine (Minocycline) that I am taking immensly and found lots and lots of info,
in the meantime,here’s also another link that might interest a lot of you with RA…especially as a lot of you know that diet can shift the resident population of our gut bacteriahttp://www.sciencedaily.com/releases/2010/06/100617120716.htm
I have followed studies of Minocycline for more then 4 years now and trials are underway for it’s action in a lot of diseases.
It is neuroprotective when administered within a 48 hour time period in Stroke victims and significantly prevents further damage to the brain, due to the swelling and inflammation in the aftermath of a stroke.
It is also studied in HIV and also significantly reduces the viral load of those infected by protecting the Immune cells from the entering of the Virus. It helps fighting fatigue as it is very protective of the Mitochondria in our cells, which are the power house of our cells that produce the most energy.
It is all interesting as it describes the action and different pathways and gives information on what and how it works in our bodies and not just in the case of RA.@RAinPA wrote:
Today was my first appt with my rheummy since I started AP 2 months ago (which he did not know about). After reading several posts on here about other peoples experience, I was sure that he wouldn’t agree with my choice of treatment. Boy, is that an understatement! I didn’t think he could be so negative. He said all the things that other people have quoted their rheummy’s as saying: “not enough studies”, “treatment was used back in the 70’s & 80’s”, “not potent enough”, “antibiotics will not work for an autoimmune disease”…my favorite was when I told him my AP Dr has treated RA patients this way and some have gone into remission “well then I have to question whether or not they actually had RA to begin with”! His recommendation is that I go back onto the methotrexate and/or a biologic and that if I don’t, I will be in a wheelchair within 10-15 years, I’m only 29! Currently I’m taking 100mgs of minocycline (teva) MWF and 5 mgs of prednisone a day as well as fish oil and ibprophen as needed. My AP Dr suggested I do the clindy IV’s. I was able to find someone close to me that can administer the IV, I just need to call my AP Dr tomorrow and order the supplies. Like I said, I’ve been on the oral ap for 2 months and have not noticed any changes. I’m curious as to how many of you with RA have done the clindy IV’s and what was the outcome? How long did it take for you to notice any changes? Thank you in advance for your responses!
I told you my story but I actually didn’t really answer your question about how long it took to notice change.
Well, this is how it went for me. ( I can tell you the change almost to the day as I kept writing things into my pocket calendar and I kept them all) I developed a system for my pocket calendar with colored marker dots. I used a red dot for bad days and green dots for good days. Large red dots for very bad and large green dots for very good days and the word IBU if I took pain killers and I made my dots every day in the eveing. So now I had a complete history of my own pain rating visible as soon as I opened my pocket calender. When I look at it now, this is what happened. At first all that happened was that the pains where pretty much the same but the interval of good days got longer. Also note that I tried to sit out the pain as much as possible so I could really honestly tell whether I had less pain because I took Ibuprofen or because I actually got better. So after about 3 months the IBU-notes got much less, meaning I needed less pain meds even though the pain was the same. Then my red dots gradually got smaller (still had big ones in between but less and less).
So bottom line…the healing process is very gradual. And because of my “point-system” I was actually able to see the difference before I really noticed it and that kept me encouraged until I finally noticed that the pain actually started to lessen quite a bit.I can say that in my case the really mean flares where pretty much gone after a year and now after almost 5 years I got nothing with RF in the negative and Anti-CCP still going down and down.@Joe M wrote:
@Maz wrote:
@RAinPA wrote:
… thousands upon thousands of patients who have gone into remission on abx therapy since the 1940s
Hi, just wondering where you got those numbers? Do you mean 900,000 or 2,000? Can you point me to where I can read more about these remissions?
Joe, you’ve been around for yonks now…is it really necessary to re-hash this old ground?
Please refer to The New Arthritis Breakthrough…Brown treated around 10000 patients with AP successfully. AP docs since his time have also treated thousands of patients. Perhaps you would like to write to each one to ask them for their figures and a more accurate head count of their successes? Dr. S is now writing a book to these ends. Of course, these stats are anecdotal and not peer-reviewed, double-blind, placebo-controlled studies, so I know these will not satisfy your inquiry. Brown, in his compassion, didn’t believe in placebo-controlled studies for rheumatics, leaving an arm of the cohort untreated and in pain.
If your wife is interested in re-starting AP, please let her know we’d be happy to offer peer support here. Last we heard, she was satsifed with her Humira, which is great. Do hope she continues to be well.
Thank you to everyone who responded. So the general consenses seems to be that the IV’s seemed to help push things along a little faster than the oral alone. I love reading all of your stories and words of encouragement. I feel so blessed to have found this way of treatment as well as a forum with great (and very knowledgable) people to talk to and ask whatever questions I may have. I know that I have only been on this treatment for 2 months and that this is a long process, but I have no doubt that this is going to work for me!! Thank you all again!!
Hello RAinPA,
I noticed that you are on 100 mg. of mino on MWF, I wonder if that is a high enough dose? Dr. S. in Iowa, (one of the best AP doctors around), started me out on 100 mg. twice a day every day………..I had someone call me back last October to ask me about AP, he convienced his primary care Dr. to give him the script for mino. He wrote the script for 100 mg. a day, every day. The patient called me in Dec. and said he was not feeling any better, we continued to talk and I told him I was taking 100mg. twice a day, so he went back to his doctor and ask for the same as me. I talked to this man on Tuesday of this week, and he said after his dosage was uped, he began noticing a difference.. He said he can really tell that he is gaining over the disease…he is 76 years old. This is just a thought I am just a fellow patient …Your dr. is an AP doctor so he should know…
Judy
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