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I too get “Doxy Stains” on my teeth. I have my teeth cleaned every 4 months – did so before arthritis and still do. On a positive note, the hygienist does this thing where she measures the “pockets between the teeth and guns” and my numbers have gotten better since starting AP. She even said that some dental infections were treated with Doxy – so there you go – another positive effect of AP.
Well, thank you all. This is very informative. JB, I hope you get good news and I now better understand what you're dealing with. My RD has quite an excellent reputation but because my blood work was all over the place he couldn't give me a specific label. After reading about UCTD I got the impression it's what you get before you become “full blown” anything, that is, whatever it is you're going to be, or get if you aren't already definite RA, lupus, etc. Does that make sense to you? Anyway, I guess this is more serious than I thought, even though I take the RA drugs. The RD said he does NOT want to put me on any biologics, which is great, but what happens when the MTX stops working? I'm almost at the limit now. Another good reason to go AP.
I'm waiting for my copy of “The New Arthritis Breakthrough” so I can be very well informed when I talk to my RD next month. Right now I feel that even if he doesn't support it, I'll do it anyway if I can get a doctor to go along with that. I have the name of a doctor given me by this site and I'll go from there.
How many of you are doing this without your RD's support?
My Rheumatologist put me on MTX after the 2nd joint became involved. Then the 3rd. But I'm holding at 3 joints involved. I couldn't get him to give me AP no matter how much I badgered him. He finally sent an email to Dr. O. in Omaha and Dr. O said he uses Doxy or Mino with MTX all the time. The kicker here is my Rheumy wouldn't give me Doxy unless I stayed in the MTX – and I wouldn't do that. So – I never went back to him. I go to Dr. RK in Lufkin – 200 miles each way – but only 2 or 3 times a year. My Rheumy was only 1.5 miles from my house but I had to see him every 6 weeks because as you might have guessed – he needed to check my liver for MTX damage.So count me as 1 who chooses AP without my Rheumy's blessing.
BTW – my last Rheumy visit was October last year. I plan to go see him again this October to show him how well I'm doing on Doxy, take him a copy of The Arthritis Breakthrough (I already have the book to give him) and hopefully convince him to treat others with AP. Fat chance I know – but we all have to try to educate our doctors.
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I thought about doing that. But I pay out of pocket and realized that I would have to pay the SOB to show him and then most likely he wouldn't believe me anyway. The usual rejoinder is that you either got spontaneous remission or you didn't really have RA afterall. You couldn't have. Imagine that? Besides, there isn't a single rheumatologist in the country who doesn't know about AP. Rather, they have all told each other that it is only for mild cases, or for new cases; that it only works as an immuno-suppresive and gosh they have such better ones now, and my favorite, it is dangerous (but not for teenagers with acne).
What I don't understand is, since there are studies that do show results, why not just try the AP for UCTD, or any of the milder forms of RA? I would have been happy to try that, even if I had to take MTX with it for a while. Anything to keep from having to take MTX long term.
Question: For those of you on AP only, do you get regular blood work to check on your liver and kidneys? I read that mino and it's cousins can be hard on these organs in a similar way to MTX and that blood work is sometimes done. Is that still true?
Doc checks my blood annually at my physical. But then I only take antibiotics every other day and not very much antibiotics at that. I am currently taking 1/4 zith (62.5mg) once each 10-days, and both 50mg of Minocycline (1/2 capsule) with 75mg of Clindy (1/2 capsule) on alternate days. Plenty to give me herxing but not enough powder to make someone sneeze.
I read that mino and it's cousins can be hard on these organs in a similar way to MTX and that blood work is sometimes done. Is that still true?
Jesse – not acording to the latest advice from ACR on intervals for bloodwork being taken after commencing on respective DMARD. Here is a copy of that info. You will see that they do not recommend ANY followup bloodwork for mino! Tends to put into perspective the considered benign nature of this abx. You can read the whole article also by going to:
http://www.rheumatology.org/publications/guidelines/recommendations.asp?aud=mem
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)Thank you Lynnie. I see once again that mino is listed along with MTX as a recommended drug and I was wondering why the RD didn't start me on that. Then I remembered that I have an allergy to tetryacyclene and sulfa drugs, so he was somewhat limited. I'm willing to try mino anyway, because that allerigic reaction (itchy eyes) was over 30 years ago and one doctor even questioned if that was a true allergic reaction. We'll see what the RD, PCP and AP doctors say about that.
I was so very glad to see that blood tests are not as routienly done for mino. To me that is a true indication of how much more benign this approach is.
One thing I believe I have misunderstood about the AP approach… I thought it was treating an infection, and therefore, eventually could even, in some mild cases, “cure” the underlying autoimmune disease. But in my reading I found that it's meant to address the problem of inflammation, which is not a problem for me. My blood work never shows significant inflammation, and I only occasionally have stiff joints over several parts of my body, with minimal swelling of my fingers on rare occasions. The one nodule I had on my pinky finger as disappeared with the increase in the MTX (after getting worse at first). I understand this is also common in AP therapy.
Anyway, I'm not sure if AP is right for my UCTD because inflammation is not a problem for me. Pain, weakness and peripheral neuropathy along my left side (face to toes) is my worse problem. Can anything that is treated with MTX and Plaq. be treated with AP successfully? Is it treating the infection or the inflammation?
I apologize if I'm being a pest here, but deciding to change my whole medical approach is a huge decision…one I'm not taking lightly. I appreciate your patience while I sort through this. 🙂
Jesse – many/most on this Board would believe in the infectious cause of their disease and are treating it accordingly with AP. Dr Brown certainly did and this site is dedicated to his memory and to continuing his work. There's plenty you can read up on with regard to this from the main page of this site, at rheumatic.org and in The New Arthritis Breakthough. You will also find some people however, both here and elsewhere, who take mino as a relatively benign immuno-modulater – a DMARD – though not an anti-inflammatory as such. Maybe that is what has confused you.
You might be interested in this lecture given by Harold W Clark, one of Dr Brown's colleagues, in 1999, on treating the infectious cause of arthritis. 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)Two rhuemy wanted to put me on Cytaxon (a chemo drug). I refused. I am glad I did not. I was in the same dilemma like you are dealing now. I reluctantly took plaquenil and prednison because I had no other choice when my ESR was 98.
Looking back, I am glad I found AP which is a relatively “safe” treatment comparing to all other medicine the doctors wanted to put me on.
You may want to make sure your liver and kidney function well for AP.
JB
Jessie,
I am with the others here that UCTD/MCTD is just a label and it can and does affect major organs and tissues. I have MCTD and my presenting symptoms were rashes and hives and then kidney dysfunction. Now RA nodules?
I would never believe a doc telling me that my disease is not as serious as full blown lupus , RA etc. I also believe if UCTD is treated with meth/plaq , (which it is at some point), then it must be serious enough to prescribe those drugs as well.
You are wise to do your homework .I did the same but i will say i learned more here than i did from any of the 14 specialists i went to, put together.
Have you by chance been tested for mycoplasma, lyme or other infectious pathogens?
Casey
Thank you for these helpful responses. I hate to admit I couldn't get through the article posted. It's just too deep for me. But I have ordered The Arthritis Breakthrough and look forward to reading it.
My RD didn't say UCTD is not serious. That's what I came away with when reading up on it. The fact that I was put on MTX and Plaq. makes me think he's treating it as a serious issue. That, and the fact that my ANCA was high made him “nervous” about vasculitis. The ANCA is normal now and I'm hoping it will remain so on AP. The more I learn, the more I believe AP is at least worth a try.
I appreciate the time and effort you all have invested in helping me with this process. I expect I'll be here with many more questions as I continue. I also feel that I learn more here from the “veterans” than in what I read. Just as on the AI boards, the people here are ones who have lived and breathed their disease and therapies and there is absolutely nothing like the voice of experience. I'll take that every time. It has served me well in the past.
Jessie,
I, too, read the that MCTD/UCTD was not as serious as the others. Good thing we went farther than believing that eh!!! I wonder how they come up with that!!
Best wishes,
Casey
Jesse – one word about using the Board as your main source of information. We are an eclectic lot and we have differing manifestations of disease and symptoms, different opinions, different approaches and different responses. They may not be yours. You also need to commit to educating yourself about what you have and of finding a path that suits you. We are certainly here to help and support and share but nothing will beat you being your own case manager. 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)Thanks Casey. It's good to know I wasn't the only one reading this misinformation.
Lynnie, your point is well taken and I understand there are limits to what I can expect/learn from this site. I know, for instance, that those that frequent this board are not physicians. I also know they will have different experiences and health issues than I do. But if past history is any indication, I will have access to valuable information that I won't find in a book or medical journal. It's up to me to sort through this information, use what I can and discard what doesn't apply to me.
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