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Hi guys – I was seeing Dr. T in Boston, but I moved to San Francisco 6 months ago and need a new doctor. I just spoke to my 4th rheumy and the conversation is always the same. Like others, this one insisted minocycline is not a DMARD but that it may have some anti-inflammatory properties. She also said she knows they did some tests in Boston but they have since proven that mino will not work. She said based on what I told her (that my RA was caught early on and appears well-controlled with mino) she would be ok prescribing mino but that she does not believe it works to control the disease.
I feel disheartened. I?m frustrated that I cannot find a rheumy in the Bay Area who will even be open-minded about this. I?d like to avoid having to trek all the way to Riverside to see Dr. F and since she said she would prescribe mino, I?m wondering if this is the best I can hope for?? She did ask me to bring my blood work. Even though my levels are not high, they are elevated. I just worry that I?ll be fed lots of horror stories about what will happen to me if I do not start on something stronger, and I really don?t need to be further scared about my RA.
Do any of you have your RA monitored by a primary care physician? If so, how does one go about finding one who would be open to prescribing mino? Are naturopaths more open-minded or is it just a case of dialing everyone I find to see who is open to this? If any of you do see Dr. F, how many times a year do you go? I really can?t afford to take the time off more than twice a year, so if I would have to see him every other month, it?s just not feasible.
Any advice you have is greatly appreciated. Thanks in advance! 🙂I don't have one anymore Serenity. My experiences were not very positive, so I opted out and had a heart to heart talk with my GP. She has prescibed my mino and is monitering my bloodwork. So far it is working out quite well. Each visit she is impressed with the results and so am I so we will probably just continue on this track.
Have you checked with the volunteers here for an AP friendly Dr in your area? As far as finding a regular Dr that is friendly, all I did was print out the info on the main site, bound it up in a nice report style folder and dropped it off for her to read. Then I made an appointment a couple of weeks later for the discussion. Maybe I was lucky, but I think she was impressed by the documented results and the fact that minocycline is a relatively harmless drug and decided that it couldn't hurt…
The rest, as they say, is history.
With the addition of a regime of MSM, my symptoms are 100% better and I believe the mino is working. Day and night difference from before and still improving.
Best wishes!
Dave
Yes, I see a rheumy who prescribed the mino without batting an eye, though I had to ask for it and I had tried other meds first. I'm a curiosity to her–when I started on it, I was her only patient on minocycline alone. She comments every time I see her that she is happy the mino is working so well for me. I wonder if she prescribes it more, now. I may ask that question. I teach her things–she didn't know the importance of probiotics, she didn't know what the skin and teeth discoloration looked like, until me.
At one point, I had a second opinion from a rheumy recommended here. He also had knowledge of, and respect for, AP. I live in Minnesota.
Sierra
I don't have a rheumy.. I got initially diagnosed by my GP and then referred to a rheumy who confirmed the diagnosis.. He immediately started me on Naproxen and Sulfazine. I didn't know anything about AP at that point..
During the month I was taking the above I researched like crazy.. I went to a naturalpath a few times and he pointed out some food sensitivities.. I got bloodwork done to see if the above meds were affecting my liver (which they were).. When I went back for my second appt with that rheumy he took me off the sulfazine because it was affecting my liver and wanted to put me on MTX..
My wife and I were (and are still) trying to conceive so he said he couldn't put me on it but had to put me on something saying I have a severe / very progressive form of RA.. He wrote a script for planquil and that was the last time I seen him.. I never filled the script and found out about AP a few weeks later..
I have an AP doctor but she isn't an MD.. I know 100% that the rheumy I had gone to would not go for AP..
Not sure if I should try to find another rheumy or not? What do they really provide? I mean.. Do they just look at your bloodwork? Take xrays? What do they do that another doctor can't?
Am I stupid for not finding one? Thing is… There are only like two around here and I'm 99% positive the other one won't go for AP either.
Hi Serenity. I have not had a rheumy for a very long time. The last one I saw in 2003 was for one consult. She believed in the infectious origin but didnt believe mino worked and wanted me on plaquenil. After reading the Book and all I could on this site re the treatment, I took Mino as prescribed by my GP for 5 years – with me case managing myself. Last Feb I decided to fly interstate to see an AP Doc to see if we could nudge my RF further down. I was symptom-free (after a few months on mino) but my RF was still too high for my liking. Dr Brown talks about the role of rheumatologists in patient care and the benefits of General Practitioners/Family Doctors for this approach extremely eloquently in The Road Back. See Chapter 26 (page 235) of The Road Back portion of The New Arthritis Breakthrough and Chapter 28 (page 246). 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 Serenity,
I chose not to go the conventional rheumatological route in spite of warnings of gloom and doom from various docs I've bumped into along the way. Instead, I see a Lyme Literate physician who specialises in autoimmune conditions and their connection with Lyme disease and other tickborne infections. He's an internal med guy, but as a microbiologist at Yale, spent many years looking at all these bugs under his microscope. He's highly regarded and has worked alongside the likes of the brilliant researcher, Lida Mattman, in various studies they have done together. He has complete conviction in infectious causes and it sure has made everything a lot easier to get the tests needed and my preferred treatment without having to try to beat “the system.” If I ever have need of a rheumy down the line, I would go to one for services whatever sevices I might need that I couldn't get elsewhere, but for now it just makes for an easier life.
Very much a personal choice on my part, but no regrets.
Peace, Maz
No rheumy here, either……..I fired him when he told me how hopeless my future was. :angry: I traveled to see Dr. S. in Iowa and currently travel to see my LLMD who, Like Maz's doctor, is convinced there is an infectious connection to all of these AI diseases.
At the beginning, I did exactly what Dave did and made a presentation to my PCP (although Dave's was fancier :)) and he has been great with filling in the gaps for lab orders, etc. I see him every few months and he is thrilled at how well I'm doing. He's the first to tell you he doesn't believe in the infectious theory and always says all the credit goes to me for figuring it out. Crazy, but it's convenient and I appreciate his being willing to help me. He was the first to give me the Minocin that I was asking for because it was so benign and knew it wouldn't hurt me.
The two specialists in the field that I've seen welcome patient input to get the most out of the antibiotic protocol. You are the best judge when adjustments need to be made so you need a doctor who will be flexible and work with you ~ regardless of his speciality.
Good luck…….kim
Serenity, I do not have a rheumy. My Derm and IM do all I need at this point. I tried 3 different rheumys and did not like any of them. My IM is quite co-operative. Best wishes, JoAnn
My rheumatologist count is 4 so far and batting zero for all of them. Haven't seen the last one since October-ish. She was nice, but very traditional in her ideas.
I think unless you have someone very open minded, you'll run into that “its not a DMARD, but an anti-inflammatory” story. This is crazy, a) there have been studies showing minocin to be a DMARD and b) if something WORKS, why not try it? This baffles me. Even if its just a powerful anti-inflammatory, so what? So many people have success with abx, as evidenced here by many many testimonials.
It is frustrating….its like doctors think that we are some vacant headed zombies who can be hypnotized by information we read on the internet, instead of intelligent, rationally thinking adults who are making informed, data-driven decisions.
[user=854]tainabell[/user] wrote:
It is frustrating….its like doctors think that we are some vacant headed zombies who can be hypnotized by information we read on the internet, instead of intelligent, rationally thinking adults who are making informed, data-driven decisions.
Preach it sista! That is so true..
No rheumy here either. I see my LLMD and my naturapath. So far so good :)!
Trudi
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
My rheumy seemed promising at first but then didn't return phone calls with blood test results etc. I have seen Dr S in Iowa and basically work with him and a naturopath for diet etc. I will go to my rheumy simply for the diagnostics that he orders and my insurance covers. That is it (unless he magically becomes more open minded 🙂 If this disease has taught me anything it is that in order to get well you do have to sometimes veer from mainstream treatment options and we are all in murky somwehat uncharted waters!
No rhemuy here either! I see an intergrative medicine doctor who has been very open minded and does not hesitate trying anything (within reason) that I have suggested. I did not like my rheumy either and left when I asked her if she would prescribe mino and she said “no and where did I hear about that”. Very odd response if you ask me.
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