Doctor’s Criticism

[jgn_mom]

Hello All,
I am 9 months into my AP therapy. I haven’t noticed an improvement in pain but I think the swelling is generally better. Dr. F says a good 2-5 years to see improvement since I’ve had this disease for 18 years. I hadn’t seen my Rheumatologist here in Ontario Canada since Jan 2013 fearful of what she would say about the AP therapy. She is retiring so I was moved to the head of the department and I went to see her for the first time yesterday. I went there mainly because they were no longer going to give me a prescription for my monthly biologic. It works for about 10 days which isn’t much but with the pain I’m in, I’ll take anything.
WELL it did not go well as far as the AP therapy is concerned. She was mortified. She said it was absolutely crazy numerous times. She used the terms irresponsible, dangerous and not an approved treatment. She asked who would be allowing me to do this here and I told her my family doctor was supporting me and she couldn’t believe it. “Does he know the liability risk?” She said she could deal with the minocycline although it is not approved for that use but people claim it helps. The reason is unknown. She can accept it because of the low risk of drug resistance… which she harped on regarding the intervenous clindamycin. She was dead against that. Said it was a risk to my bowel heath and it is dangerous to me and others due to the chance of resistance. I explained the probiotics I was on but that was no consolation to her. 🙁 🙁
I told her Dr. F has over 30 years experience with this practice and has had a high success rate. She didn’t care. I told her that he is respected in his field and a member in good standing with the American College of Rheumatologists. she said “I can assure you that the American College of Rheumatology does not approve this treatment”
I am to see her at the end of September. I am asking for your input. What have been your experiences with doctors and what do you suggest I do on my next visit?
On a positive note, she did say she can totally see why I ended up going to California since over the past 18 years they have not been helpful enough to control my disease. (I am 40 years old and she says I definitely need my left knee replaced right away. 2 years ago I inquired but was refused due to my age.)
Thoughts? Advice? Thanks to you all!
Michele

[lemons]

The woman sounds like a right old battle axe. Read my posts and see what an idiot I had to deal with. I am in the UK and have finally convinced an N.H.S consultant rheumatologist that this treatment does work and he has now agreed to prescribe Minocin.

[Lynne G.SD]

Hi Michelle;
I live in Ontario and have been on AP for almost 16 years.I have some ups and downs with the scleroderma but am usually just fine and no visible sighns of the disease.I say visible because I still have it.
I only found out 4 years ago that I have Lyme and that is why the regular AP did not get rid of the problem.I figure I have had Lyme for over 20 years.Have you been tested?If you come back positive you can bet that your rheumy will have egg all over her face and will not be able to deny any antibiotic.Long standing Lyme takes many and for years and years.Then you can give her s— for not figuring it out as there has been a big campain here about the dangers of Lyme

[DianaW13]

Hi Michele,

I live in Ottawa Ontario – where are you?

I started AP 2 12 years ago for RA. It was my GP who wrote the prescription – but my rheumy is supportive and will write it also (but not because she is a believer). Anyways, I last saw her in August 2013. She came into her office and was surprised at how well I looked. She was even more surprised after she examined me and could only find one slightly swollen joint (I had MANY previously). Well, she sent a letter to my GP and told him this, but what really made me want to bang my head against the wall was her statement that….Diana claims the Minocycline is what is helping her (well…DUH….it’s the only drug I take). I tell you this because even if you did look a lot better, the doctor will most likely never believe it to be because of AP. In fact, her explanation to me was “well, some people do experience remission on their own”.

Also, I was on the Apo generic brand, which worked for over a year for me, but I had to switch to TEVA last month as the Apo suddenly turned out to be a dud (there is another member here who experienced the same thing just now as well). So if that is the brand you are on, you may consider switching.

All the best to you Michele,

Diana

[marg]

OH, boy, it’s hard to stand up against a doctor like this isn’t it?
My daughter had a rheumy in Toronto who said to her “Well it’s your body”, clearly thinking the Minocin wouldn’t work. Well it did work – quickly and effectively- and then her doctor prescribed it to other patients, good results.
This doctor is not taking new patients as she has a young growing family. At the time I thought we were lucky, now I know we were extremely lucky.

As your condition is long standing very likely any protocol will take time. I wish you all the best – this shouldn’t be so hard.
marg

[jgn_mom]

Thanks all for taking the time to give me your input. I am in southwestern Ontario. I go to London to the Rheumatologist. I did get tested for Lyme. I asked for the test and that was a real production… and then after reading up on Lyme testing and how awful the testing is here ( as in unreliable) I spent $500 and sent my blood to the Igenex Lab in California. That was about 5 years ago now. I tested negative.
This Rheumatologist really harped on the the whole resistance aspect of the antibiotic. She said clindamycin is dangerous. I’m sure I read that it was one of the least likely antibiotics to cause resistance but of course I can’t remember where I saw this info.
So I’m no further ahead with this visit. I also asked her about medical marijuana but she said I had to get the disease under control first. Guess being in agony wasn’t a priority to her. At least she could have suggested something if she felt that wasn’t a viable possibility. UGGHH so frustrating.
I emailed Dr. F to tell him what happened. His medical assistant emailed me back and said he is out of the country until the end of the month and he would contact me when he returned. She said she wasn’t surprised at all at the reaction I got and was very apologetic and assured me that Dr. F knew what he was doing. I said of course.. after all I sought him out when investigating Doctors for this treatment.
🙂

RBFV Edit to remove AP Physician’s full name as per forum guidelines. Thank you for your understanding.

[Woods1977]

Hi Michele,

I’m a Michelle too; I reside in Michigan. Perhaps it would be wise to find another Rheumy if you absoutely must see one; a Rheumy who won’t be so “abbrasive” regarding your choice.

I don’t see a Rhemy at all, just my AP doctor, but my RA is fairly well controlled with Mino at this point in time. It’s very unfortunate that the standard Rheumatological community isn’t familar with this protocol and very narrow minded to say the least.

Michele, do you absoutely have to see the Rheumy? With all respect it doesn’t sound like it’s been much help up to this point. Maybe you could find someone to work with who will allow you to do AP and use your biologic?

[MLTelfer]

Honestly, we roll dice. My traditional rheumy made a statement early on. She said this disease has made her a skeptic. This stuck with me. What a good doctor. In one word she spoke the truth. Nobody knows whats really going on, and we really don’t know if we are impacting this disease with treatment or if the disease is doing what the disease does.

Here is my opinion: minocycline is a drug and who knows what is really going on in the body. I don’t believe it is harmless. No way! Balanced against the other drugs it is worth a shot.

My rheumy is supporting my AP excursion with Dr. F. She is not a believer, and I don’t think she is even open-minded to it, but she is willing to let us do it and help us with it as a long shot. Does that make her any different than your doctor? Probably not. Yours is simply saying what mine is thinking. Do what you want with your doctor. I think she was just trying to look after you in her own way.

[Jan Lucinda1]

The American College of Rheumatology does approve this treatment. That is why my rheumatologist prescribes it for me.

[PhilC]

Hi Michele,

Suggestion: Download the PDF file found on this page and give a printed copy of it to your rheumatologist:
Use of Minocycline for the Treatment of Rheumatoid Arthritis

By the way, one scientific study found minocycline to be superior to hydroxychloroquine (Plaquenil) for the treatment of early seropositive rheumatoid arthritis.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[jgn_mom]

Thanks Phil,
Do you have any info on clindamycin? That’s the one she really has a problem with 😕

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