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How does this man manage to treat so many people?!
I don't hear many other names of docs mentioned around here lately.
And what's with the continued secretiveness of the docs?
Ap is approved for these treatments.
Why do we continue to implement the policy of not mentioning names? I mean, one poster here has a photo of Dr. “S”.
Why do we continue to operate like some secret society? We're not lepers. The docs aren't breaking any laws.
Jenn
[user=10]Jennhere[/user] wrote:
Ap is approved for these treatments.
Why do we continue to implement the policy of not mentioning names? I mean, one poster here has a photo of Dr. “S”.
Why do we continue to operate like some secret society? We're not lepers. The docs aren't breaking any laws.
Hi Jenn,
You're right, minocycline is an ACR-approved, off-label DMARD for RA and, strictly speaking, it shouldn't be a problem as a treatment option. However, IV Clindy and combination therapies aren't specifically approved and these are used at a physician's discretion. These additional antibiotic treatments are not ones that all AP doctors employ and, it seems, these treatments tend to be reserved for use by those who believe firmly in infectious causes for rheumatoid diseases.
As was described in The New Arthritis Breakthrough, the doctors who use these combination antibiotic protocols still tend to be moving targets for ridicule by their peers (not to mention the patients who ask for these treatments), as Dr Brown experienced throughout his medical career. This is quite similar to Lyme Literate physicians, who must 'fly under the radar,' if they are going to continue treating as many chronic patients as they possibly can without external pressure and strong-arming from their peers or “the powers that be.”
Some websites do post doctor names and publish physician referral lists but, as I understand it, RBF prefers to protect those doctors willing to prescribe AP until such time as infectious theory is widely accepted. In effect, it also protects patients, because without our AP docs who believe in the infectious cause, there would be much less flexibility with preferred antibiotic protocols. As you know, the standard ACR approved dosing of minocycline is daily, 100mg (bid), which is fine for those patients who can tolerate this dose or need it and do well on it. However, minocycline is not viewed by the mainstream as anything but an anti-inflammatory DMARD. Maybe more to the point, very often, because minocycline is a longterm therapy and takes time to experience results (and some people initially worsen with herxing), it's assumed as being one of the least effective treatments for treating rheumatoid disease, which just isn't the case.
As regards Dr S…I suppose he's become one of the best known AP doctors, as he was given a full chapter in The New Arthritis Breakthrough, having trained under Dr Brown. Severe patients who really want/need to jumpstart their AP, will go to him for a full blood workup (including mycoplasma testing) and IV Clindy. He's also a pretty compassionate sort of guy, so it makes for a reassuring start when there is a lot of fear surrounding initial dx or during an unnerving period of backsliding. When patients go to see Dr S, it's of great interest to many who frequent the BB to learn all about such a visit to this highly esteemed AP doc, as it helps in making informed treatment choices.
I know this covers much of what you already know, Jen, but your questions are very valid ones and to which I just thought others who are new to AP might be interested to hear some answers. While it's true that any rheumy or GP can prescribe minocycline, not all believe in its efficacy for use nor in infectious causes. As such, it's important to RBF to protect those doctors who do, so that patients visiting this board can continue to enjoy having this choice.
….and do fully appreciate your frustration, as I'm sure others here do, as well. 😉
Peace, Maz
In addition to what Maz so beautifully wrote above, I would just like to add:
When RBF's listing was compiled over many years by Henry Scammell, and then newer volunteers, this was a commitment that RBF made with these doctors who agreed to be listed. We cannot now go back on this commitment. It is a way of respecting the doctor's privacy. Each doctor can decide for themselves just how public they want to be about the use of the AP therapy.
When we saw the first AP doctor for Jessica, I asked him a question about this matter. He told me that he did not want to be listed publically “because I have to live in this little community and interact with my peers.” This AP doctor is very experienced and committed to the use of Dr. Brown's full protocol, he is also an LLMD. He attended one of the Doctor's Conferences put on by RBF in the late 90's. He is fully supportive of AP, yet he prefers to remain private about it, we have to make it each individual doctor's choice. If we did not keep this information private, we would likely have physicians request that their name be removed from the list. That would not be a good thing for anyone looking for a doctor to administer the AP protocol.
I hope this helps to clarify why RBF continues with the guideline of not posting the full name of physicians using the AP therapy.
Cheryl
Just to add a note from Australia. The new AP doc I have been interstate to see also prefers to 'fly under the radar'. I believe her medical career was put in jeopardy some years ago when she was doing IV's at the local hospital. She is not a rheumie, as I gather many AP docs are not. Her presecriptions are also non National Health Service (yes we have one here) which means you pay more for the abx. But it means they dont come under scrutiny by the Pharmaceutical Benefits Scheme (a Govt org.). It's acceptable to choose a treatment regime that is not PBS sanctioned……..but the PBS is not okay with paying a good percentage of it if it's an off-label regime. 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)Aside from what everyone else has said…..I don't post my full name, or the names of any doctor my daughter sees, AP or not. On this board or any other public board.
During an especially hard time (pre-AP) when my daughter was suffering from horrible stomach problems from an NSAID, a mom on another board posted how wonderful our ped rheum was to her daughter. My daughter was doubled-over in pain from his meds, and he would not return my call. Our ped heard her agony over the phone, and his voice broke as he tried to figure out what to do, but peds simply do not have the experience with JRA meds/doses. It was a terrible situation, and when that mom posted our ped rheum called her “often” “just to check and see how her daughter was doing”, I literally started shaking all over. I just couldn't believe it.
Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.
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