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My rheumatologist has prescribed minoclycline 2x a day everyday, because I couldn't handle any other RA treatment. After reading this website i think i will start with Mon wed and Friday 2 x day. I have Ra for15 years. I had to quit Humira because I just about died due to psudomonis pneomonia and a fungal infection in my lungs, very bad stuff. After quiting the Humira the RA came back 1 1/2 years later. I just had a strep infec in my lungs which i was treated with cipro last week. But was wondering if i should also be treated with a ampicillin along with the minoclycline. To make sure i get rid of the strep? Any suggestions?
S Pfister
S Pfister, your post has been moved from the Personal Progress Threads section to the main Discussion Forum. Personal Progress Threads are for creating a personal diary, so will not generate responses from other posters. Thanks and welcome! 🙂
[user=2270]spfister[/user] wrote:
My rheumatologist has prescribed minoclycline 2x a day everyday, because I couldn't handle any other RA treatment. After reading this website i think i will start with Mon wed and Friday 2 x day. I have Ra for15 years. I had to quit Humira because I just about died due to psudomonis pneomonia and a fungal infection in my lungs, very bad stuff. After quiting the Humira the RA came back 1 1/2 years later. I just had a strep infec in my lungs which i was treated with cipro last week. But was wondering if i should also be treated with a ampicillin along with the minoclycline. To make sure i get rid of the strep? Any suggestions?
Hi Pfister,
Your plan to start your minocycline low and slow sounds like a good one. Most RAers who have a lot of inflammation can't tolerate the Harvard Protocol (mino or doxy 100mg twice daily) and it leads to heavy herxing, which produces even more inflammation. Some herxing is good, because it means the abx are reaching their target, but too much herxing is counterproductive, as more inflam produces a barrier. So, it's good to keep the herxing tolerable. This can go on for a while, too, but you should see windows of light within a month or two. Some folks actually start even lower with 100mg on a MWF and gradually increase dose to tolerance over the following weeks.
In longstanding cases of RA, Brown would also employ IV clindamycin in a 5 or 7 day series, intermittantly…to give the orals a boost at the beginning, for maintenance and during flares. It's not that breakthrough flares won't continue to occur…they likely will for a while, but these should begin to decrease in frequency, duration and intensity with time. It's a longterm therapy, in effect. 😉 If you can also read a copy of The New Arthritis Breakthrough, by Henry Scammell, this should answer many of the basic AP questions you may have.
You'll find info in the book on strep and the importance of treating elevated strep titers, because this infection can prevent progress on AP. Interestingly, Brown found that patients with nodules tended to have elevated strep titers and he believed it was the body's way of encapsulating and forming skeins around pockets of infection. You might want to ask your doc if you could have your strep titers measured, as this may give you a heads up if you need to incorporate some amoxicillin (or azithromycin which goes well with mino and is great for lungs) into your protocol. If you watch the Brown video, it mentions this at the end when the outline of his protocols is given. This video can stutter, so if you have this problem, then just click on pause and wait for the gray line to buffer to the end, before hitting play again…and it should play smoothly then.
Have you also started on a good daily probiotic? This is very important when on longterm abx to aid in the preventional of candida. You can use the search box above to look up what brands of probiotics others use and prefer. I've used PB8 successfully for several years now (8 caps a day).
If we can help with sending you an AP Physician list then please let us know and we'd be happy to do that!
Welcome!
Peace, Maz
PS You might also like to look into NAC (N-Acetylcysteine) which is an an anti-mucolytic agent and wonderful for reducing lung fibrosis and other lung conditions. It's a precursor to glutathione, which is one of the body's master detoxifiers, manufactured in the liver.
http://en.wikipedia.org/wiki/Acetylcysteine
Thanks so much for the info. I watched the video today and just picked up the book at the library. 🙂 I do have a DO (Dr. of Osteopathy) I think I can educate him on this protocol if he already isn't. But could you also send me a list of Doctors in my area? It might be nice to find someone experienced in the therapy. My rheumatologist is prescribing it because I asked him and i couldn't tolerate anything eles. And because of the lung problems he couldn't give anything that compromises my immune system. When you loose your immune system and become open to every opportunistic infection you become more careful. I kept telling my rheumatotlogist that i had back then that i was getting a lot of infections, she never considered it to be the Humira. Then i end up with a pulmonoligist that put two and two together, almost too late.
I'm pretty happy that the minocycline will help my lungs stay clear also.
I will start a regimine of acidoulphus, i currently take it but not too regularly. And I'll check out the NAC too.
Thanks again,
S Pfister
Hi S,
We'll need to know where you're located to send you the list of docs for your area. You can either post your state or PM one of the volunteers.
Take care….kim
I was looking to ordering the PB8 probiotic but was wondering if it is ok for me since I don't take dairy.
Thanks again
Shari
[user=2270]spfister[/user] wrote:
I was looking to ordering the PB8 probiotic but was wondering if it is ok for me since I don't take dairy.
Hi Shari,
There are many brands of probiotics out there and everyone seems to settle on a favorite or the one their doc recommends. Some folk will use several brands at once to get different strains in their mix and will also rotate probiotics, so if you bought 1 bottle of PB8 to start, then you should be able to tell if it will be okay for you.
I buy mine from here and as I usually get through a bottle in a few weeks, I buy 5 or 6 bottles at a time to save on shipping costs. Vitacost has very reasonable prices for most supps and have been very reliable, I've found:
http://www.vitacost.com/Nutrition-Now-PB-8-Pro-Biotic-Acidophilus
Hope this helps and perhaps others will chime in with their favorite brands of probiotics for you or you can just type in probiotics above and search through past discussions to see what others use.
Peace, Maz
PS Shari, just replied to your email earlier tonight asking about the doc in MO. Hope you got it okay.
Shari – if you dont take dairy then you'll need one that specifically says dairy-free, lactose-free. As far as I can see, the PB-8 doesnt specify this which usually means it is not dairy and lactose-free. Some manufacturers make two versions, so might be worth checking. 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)I know people who have treated strep with pulsing Amoxicillin. For 12 weeks?
TARCI will test for strep.
Shari,
There are 2 versions of PB8, one which is dairy (blue lid), and one that is vegetarian (green lid), and specifically states on the back: “This product contains no artificial colors, flavors, or preservatives. Contains no wheat (gluten), eggs, peanuts, tree nuts, soy or salt. Dairy Free”
Culturelle is another one I've used that has 2 versions. The dairy and gluten free box is green, and the other is green and yellow.
Maria
M,
Will the TARCI test results be accurate when on antibiotics? I have my strep titre tested monthly, and it's very low, and my rheumy and llmd don't think I need zithromax or amoxicillin because of it. Funny thing is, I got an infection after surgery a few weeks back, and they put me on a high dose of amoxicillin, and I felt remarkably well. (and herxed like crazy). Is it possible that the abx I'm on is masking a high strep titre? It seems like a lot of others with Lyme here have high strep titres, and they're on various abx protocols.
Maria
[user=977]mschmidt[/user] wrote:
M,
Will the TARCI test results be accurate when on antibiotics? I have my strep titre tested monthly, and it's very low, and my rheumy and llmd don't think I need zithromax or amoxicillin because of it. Funny thing is, I got an infection after surgery a few weeks back, and they put me on a high dose of amoxicillin, and I felt remarkably well. (and herxed like crazy). Is it possible that the abx I'm on is masking a high strep titre? It seems like a lot of others with Lyme here have high strep titres, and they're on various abx protocols.
Maria
You know, Maria, I really think Strep could be the missing puzzle piece for me. Every year in my adult life I would get Strep, each January like clockwork. The 5 years I've been sick and on abx, NO strep. This last year while off of all abx, I got Strep again along with every cold going around. 😯
Another tidbit is that I have Mitral Valve Prolapse and they used to recommend a preventative dose of Amoxicillin prior to dental cleanings, surgeries, etc. Even before I got sick I always felt better with those doses of Amoxy. 😯 Coincidence, maybe not.
My LLMD has been polling his patients and the overwhelming majority have a chronic Strep history so his thinking, and that of other LLMDs, is that the Strep may be hindering therapy, and honestly, it makes as much sense to me as anything else.
Time will tell if the theory holds, hope so. 😉
Take care……kim
p.s. Dr. C. said it would pointless to test for Strep while on abx.
Thanks Kim, that's what I thought. I do recall Dr. S doing a TARCI on me when I was just on Minocin for 2 weeks. (my first round of iv's in Iowa) I do believe he tested my strep titre but, not sure because I never got the actual test results sent to me. He just emailed that I tested positive for 2 forms of mycoplasma. (and for the life of me I've forgotten which ones…bad brain fog day:headbang:)
Gosh, you have MVP, too? I've come across SO many Lyme patients with mitral valve prolapse. I had cardiac ablation done at the age of 17 for supraventricular tachycardia. When I read up on heartblock, it was eearily similar to SVT. My first LLMD raised his eyebrow when I told him about my heart condition as a kid, and suspected I was exposed to Lyme way back then. Pretty scarey because my cardiac surgeon created scar tissue in areas of my heart to block the extra pathways thought to cause SVT. Years later, who knew that so much scar tissue would be part of my future 😯
I definitely had strep as a kid, enough to warrant my tonsils being taken out as a teenager. I actually have all my medical records from birth to 18 (picked up the stack from the hospital/clinic in my hometown last summer), and I was sick ALL the time with either tonsilitis, strep or sinus infections. I never got strep again after my tonsils were removed, and I've had a handful of sinus infections as an adult.
I'm going to bring this up again with my LLMD next month. I think it's time to add in something for EBV and Strep, just to see what happens.
Maria
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