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What’s the official reasons for not revealing doctors names on here? Can docs who hand out mino get in trouble with the medical establishment? I ask, as I was wondering if I should hide Dr E’s name (UK doc) from my mainstream rheumie/GP?
Thanks2013 Poor gut & low white blood cells. Jan 2014 RA symptoms. Diet - no gluten/dairy/nightshades/sugar. Started AP in Oct 2014. On Mino MTWTF. RA improved but still there. Many supplements.
There is no official reason that doctors names arent mentioned on this site -the thinking is some doctors prefer their privacy so it is much easier just to have a policy -“no docs names ” —Afraid you have the wrong idea –doctors dont hand out minocin rather they issue a prescription –So happens my doctor was a rheumatologist associated with Harvard Medical Faculty Associates –cant get more mainstream than that —
richie@Cathlo wrote:
What’s the official reasons for not revealing doctors names on here? Can docs who hand out mino get in trouble with the medical establishment? I ask, as I was wondering if I should hide Dr E’s name (UK doc) from my mainstream rheumie/GP?
ThanksHi Cath,
If you believe your rheumy is supportive of Dr. E., an alternative medicine doc, treating you with AP, then hopefully it’s not an issue, but it’s better to ask Dr. E. about his level of comfort on that. For some background, a very well-respected rheumy in UK who was providing AP to rheumatic patients, based in Hertfordshire, was hounded out of practice and into early retirement a few years ago, so we’re really grateful that Dr. E. came on the scene and is helping UKers who are choosing the treatment. Some rheumies will prescribe but others are not supportive and it just so happens that Richie’s rheumy, now retired, was on the research team that led the MIRA trials, so he was a special guy in that regard. It’s considered an “old” and less effective treatment by most rheumies, however, so some can be dead set against it. Unfortunately, some of the more supportive mainstream docs (not just alternative or integrative docs) are being targeted by their peers (especially in the treatment of children) with AP, so in the current climate it is probably in your own best interests and that of other UK APers to protect Dr. E., if your rheumy is not on board with your treatment choice. Just my humble opinion, but as UKers have few options, I’d err on the safe side.
My understanding is that the early board of directors of RBF did make an executive decision about the AP doc lists remaining private and it was for the reason Richie stated, but also because it serves a helpful purpose – to encourage people who choose the therapy come to the site to read the education info. Understanding it’s rationale helps patients to make a fully informed decision, because it is a therapy that requires some gumption. Many patients find they have to be upstream swimmers, because it a treatment that has been marginalized, but also because it is not an overnight sensation – a slow therapy. People who think they can take mino and get better in days or weeks are mistaken and often give up before giving it a chance to work, not understanding how the treatment works. E.g. Am sure Richie won’t mind me saying it took him about 6 years to reach remission from his scleroderma.
A final reason to consider – just my thought and I don’t speak for RBF on this – is because patient-volunteers work hard to maintain the lists for other rheumatic patients (much of which is done thru networking and word of mouth) and the lists help to keep the foundation alive. If the doc lists were openly published, who would ever think to support the foundation that keeps AP going? After 8 years of volunteering, it’s clear that it’s because APers do get well and are grateful for finding their docs here and also a community to support them that they want to give back. It’s kind of a circle like that…patients paying it fwd to other patients. 🙂 RBF still exists after 20 odd years, because AP works and because people got well again and feel invested, personally, to help keep it alive into the future for others. RBF is not like the Arthritis Foundation that receives huge grants, endorsements and has pharmaceutical sponsors. It’s a small organization that is run by patient-volunteers for other patients and exists on very small contributions. People regularly come back and say, “If RBF hadn’t passed me my AP doc’s name, I wouldn’t be here today.” In fact, one AP doc recently emailed and let us know of an office address change and stated that Road Back Foundation saved her husband’s life from lupus and the deadly drug train he’d been on and this is why she supports the treatment. Pretty cool!
Hopefully, one day, there will be a cure and RBF won’t need to be here anymore, keeping Dr. Browns legacy alive, but let’s hope it’s for that reason and not because docs are simply unaware of the treatment’s efficacy or, worse, afraid to provide the treatment.
To add to this discussion, I no longer mention AP to the rheumy whom I see annually for my SD. The reason being that he was so hostile to AP when I first mentioned it to him and I got the impression he would make life difficult for my family doctor who had prescribed AP for me. The only reason my doctor prescribed AP for me was because I had been with that medical practice for several years, they knew me well and also understood that SD has no ‘cure’ any rheumy can identify. But there are restrictions on Australian doctors ‘over prescribing’ antibiotics so my doctor took a risk for me. In return I do not give his name out to anyone. I once asked him if he would see another person with SD who contacted me through this website but he refused on the basis he wouldn’t see anyone asking for AP unless they were already a patient of his practice. Fair enough I guess because he has to protect himself from being singled out for some kind of investigation by medical authorities. When he first agreed to consider AP it was based on advice I had already received from Dr ‘S” in the USA. After reading Dr ‘S”s emails to me my doctor felt a lot more comfortable prescribing AP for me. I also printed out information from this website and left that with him for a week to give him a chance to read it before going back and discussing AP with him. By that time he was very interested in AP and for all I know has since prescribed it for patients with RA although I wouldn’t expect him to tell me if he has. He did say that if the medical authorities challenge him, he would defend my on-going AP prescriptions on the basis SD has no other treatment and no known cure. I think it’s our shared responsibility to protect the identity of doctors willing to support our needs for AP especially in countries where policies exist to restrict the use of antibiotics.
To anyone wishing to try AP I would suggest they first try their own family doctor who knows them well, who already has knowledge of their ‘failed’ past treatments and who has their best interests at heart. I would arm myself with printed information to leave with the doctor for him/her to get up to speed on AP for SD or RA before discussing it again. By that time the doctor should be half way prepared to giving it a shot. The rest can be achieved by using your own persuasive tactics!
My doctor did make me commit to seeing him regularly when I first began AP and was fascinated when tiny doses of Mino caused a huge ‘herx’ reaction for me. He said he would never have believed such small doses could have that effect. It was at that point he began to believe in AP treatment for SD.
Kudos to you, Enzed, for being such a strong self-advocate and upstream swimmer! This is not an easy thing to do when feeling so unwell in those early, scary days. You’re truly an inspiration!
How are you going at the moment? Noticed your sig line updates ended last November. Are you back on AP? Did Dr. S. have any alternate solutions for you, like trying a macrolide abx?
@Maz wrote:
Kudos to you, Enzed, for being such a strong self-advocate and upstream swimmer! This is not an easy thing to do when feeling so unwell in those early, scary days. You’re truly an inspiration!
How are you going at the moment? Noticed your sig line updates ended last November. Are you back on AP? Did Dr. S. have any alternate solutions for you, like trying a macrolide abx?
Well thank you Maz, but I had nothing else to treat SD with so had nothing to lose by giving AP a shot. And I wasn’t in a financial position to travel across Australia to see an AP doctor so my only chance was to persuade my own doctor to support me with AP. I’m just very grateful he decided to help me. But that decision was based on the information from this website I was able to provide him with. It’s your information that helped him to make his decision.
I have never revealed the name of my Surrey doctor to the rheumatologist. I read recently that UK NHS GPs are going to receive cash incentives if they drastically reduce the amount of antibiotics they prescribe. Also, they are going to be encouraged to whistle blow on colleagues who they feel are over prescribing them. As the majority of doctors in the country are against AP, I feel it best to keep as much private about ones treatment as possible.
@Maz wrote:
Kudos to you, Enzed, How are you going at the moment? Noticed your sig line updates ended last November. Are you back on AP? Did Dr. S. have any alternate solutions for you, like trying a macrolide abx?
Maz, Dr. S. recommended a restart of AP on very small doses of Doxy, Mon-Wed-Fri. However, I had unrelated medical issues and treatment that prevented a restart of AP at that time. I don’t know what ‘macrolide abx’ means? Can you please explain it? I googled it but none the wiser as I just found a list of other antibiotic drugs. One was azithromycin and I have taken courses of that in the past.
@enzed wrote:
@Maz wrote:
Kudos to you, Enzed, How are you going at the moment? Noticed your sig line updates ended last November. Are you back on AP? Did Dr. S. have any alternate solutions for you, like trying a macrolide abx?
Maz, Dr. S. recommended a restart of AP on very small doses of Doxy, Mon-Wed-Fri. However, I had unrelated medical issues and treatment that prevented a restart of AP at that time. I don’t know what ‘macrolide abx’ means? Can you please explain it? I googled it but none the wiser as I just found a list of other antibiotic drugs. One was azithromycin and I have taken courses of that in the past.
Hi Enzed,
Yes, azithromycin is in the class of macrolides, as is roxithromycin and clarithromycin. I am not sure what equivalent brand names would be in Australia, but this type of abx can be used as a substitute for tetracyclines as it also works bacteriostatically on intracellular, cell wall deficient bugs. I am using clarithromycin (aka Biaxin) as I am unable to use tetras. Here is a list of macrolides though some may vary in action, may be inappropriate for the purpose or are unavailable in some countries.i would love to try roxithromycin but it’s unavailable in the US.
http://en.m.wikipedia.org/wiki/Category:Macrolide_antibiotics
Dr. S. Should be able to suggest which alternative protocol you could try. Penicillins , erythromycins and nitroimidazoles are also sometimes used. Brown used a variety of antimicrobials,(oral or IV Clindamycin is a common one), so there are other options to try if your doc will consult again with Dr. S.
@Maz wrote:
@enzed wrote:
@Maz wrote:
Kudos to you, Enzed, How are you going at the moment? Noticed your sig line updates ended last November. Are you back on AP? Did Dr. S. have any alternate solutions for you, like trying a macrolide abx?
Maz, Dr. S. recommended a restart of AP on very small doses of Doxy, Mon-Wed-Fri. However, I had unrelated medical issues and treatment that prevented a restart of AP at that time. I don’t know what ‘macrolide abx’ means? Can you please explain it? I googled it but none the wiser as I just found a list of other antibiotic drugs. One was azithromycin and I have taken courses of that in the past.
Hi Enzed,
Yes, azithromycin is in the class of macrolides, as is roxithromycin and clarithromycin. I am not sure what equivalent brand names would be in Australia, but this type of abx can be used as a substitute for tetracyclines as it also works bacteriostatically on intracellular, cell wall deficient bugs. I am using clarithromycin (aka Biaxin) as I am unable to use tetras. Here is a list of macrolides though some may vary in action, may be inappropriate for the purpose or are unavailable in some countries.i would love to try roxithromycin but it’s unavailable in the US.
http://en.m.wikipedia.org/wiki/Category:Macrolide_antibiotics
Dr. S. Should be able to suggest which alternative protocol you could try. Penicillins , erythromycins and nitroimidazoles are also sometimes used. Brown used a variety of antimicrobials,(oral or IV Clindamycin is a common one), so there are other options to try if your doc will consult again with Dr. S.
Thanks for explaining that Maz. I have taken both azithromycin and roxythromycin at different times in the past.
Dr ‘S’ recommended 100mg of Doxy daily, with 300 mg of Roxy added once a week and I took that dose for a long time.
His advice regarding fluid build up in ankles and knees was to drop the dose of Doxy and only take it Mon-Wed-Fri (and no Roxy)Thanks everyone for your replies. I posted the question, as I my NHS rheumie sent a rather chippy letter to my GP. He discharged me for ‘refusing to reveal the name of the doctor I was seeing’, ‘following alternative treatments’, and ‘refusing his drugs’. In fact, I never refused, I just swerved his question, and started talking about Dr T MacPherson Brown.
Maz, what you say in the light of the Herts doc being hounded, I am very glad I didn’t answer him 😆 .2013 Poor gut & low white blood cells. Jan 2014 RA symptoms. Diet - no gluten/dairy/nightshades/sugar. Started AP in Oct 2014. On Mino MTWTF. RA improved but still there. Many supplements.
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