question for all

[Anonymous]

(Please repost this. I had tacked it on to someone else’s post and think it got lost in the shuffle.)

I found the info on Dr Brown’s book and consequently this site purely by chance. If you search “RA treatment” online, nothing comes up referring to antibiotics. While I consider myself very fortunate to have stumbled on this info, there are minions out there unaware of this option, and all I want to do is shout it out to those suffering needlessly. Is there a reason for this info being ‘exclusive’? Isn’t there some way to make it more accessible? Am I missing something? How did people find this site/Dr Brown’s book??

By the way, I am going for my first appt to a doctor this site found for me next week. Probably the first time ever I am looking forward to a dr’s visit:)

[lynnie_sydney]

Welcome to the Road Back Discussion Forum Phyllis.

You have found this site and info the same way that most of us have……generally by getting tired of or not wanting to start conventional symptomatic treatment and/or not believing that the body starts to attack itself ‘for no known reason’ – which is still the current medical paradigm about rheumatoid diseases.
If you read Dr Brown’s book – contained in The New Arthritis Breakthrough by Henry Scammell, many of those questions are answered. The short version is that mainstream rheumatology does not subscribe to the infectious cause/trigger theory of Dr Brown. And whilst many researchers are constantly coming up with an increasing number of infectious connections/probabilities, the simple fact is that drug companies are not going to invest huge amounts of research dollars into infectious causes that will have as the answer, treatment with drugs (antibiotics) that are out of paent or that will be soon. They cannot get a return on these. Hence, antibiotic protocols (AP) for rheumatoid diseass remains the province of those patients who are “upstream swimmers” and who will relentlessly search for answers and treatment regimes that make more sense to them and to doctors who also swim against the tide and are prepared to look for treatment options outside the conventional box.

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)

[Anonymous]

Thank you both for your thoughtful replies. But what I’m asking as well is why isn’t this info more accessible on the internet? Of course if you know the keyword “antibiotics,” this site, another I found helpful (rheumaticsupport.net) and much else pop up. But without that keyword, you’re searching blindly, and not even “alternative ra treatment” yields a clue. So people like me must be frustrated in their search, disheartened by the same tried and untrue treatments repeated on the myriad sites. Why can’t this site be listed under “RA treatments”? Is it something to do with advertising clout and dollars?? I fear I am being naiive, but am puzzled.
Most sincerely, Phyllis

[Dawn]

Phyllis,

John’s reply is spot-on!

I will only add to address your question: I found out about this website and the AB protocol by the hands-on application of another individual who had reaped it’s benefits. The loudest proclamation is made by the actual living examples (proofs) that are out there.

Heresay and websearch results are not the equivalent of “Show Me”, and people are tending to shy away from “Tell Me” anymore due to the overabundance of available information (good and bad) now-a-days.

Best to you!
Dawn

DawnF

[JoAnnC68]

Hi Phillis,

Welcome to Road Back Foundation. You will find a lot of valuable information here and the people here are wonderful!!

I wanted to reply to let you know how I found out about RBF….I went to Dr. O (lol, can I say his name? 😉 ) website to see what he had online about Rheumatoid Arthritis.

http://www.doctoroz.com/blog/jacob-teitelbaum-md/antibiotics-helpful-rheumatoid-arthritis

I’m so thankful for Dr. O, if it wasn’t for his on-line information about Antibiotic for Rheumatoid ARthritis, I’m not sure if I would have found Road Back Foundation this soon!!

Please, keep us informed on how it goes with your first visit with your Dr.

Take Care!
Jo Ann

Diagnosed with RA Jan 2012
Oct 2015- RF has dropped to 19!!! Isn't that Great! ?! I'm feeling wonderful! I'm still taking Mino 2 x daily...if I don't forget!
Oct 2014 RF has dropped to 23.1!! Taking Mino 100mg 2 x daily. No Pains & doing great!!
Oct 2013-RF has dropped to 40.9!!! Feeling Wonderful!!
7-17-2013 I'm going Great!! Still taking mino 100mg twice daily. No pains or Complaints!
5-9-2013 RA Dr said I was doing good, I could stop taking prednisone since I dropped to 1/2 mg...so will

[DianaW13]

Hi Phyllis,

You know, I can’t even tell you how I found the Road Back site! I don’t remember! But, I can tell you that I am truly blessed that I did.

I have been actively telling people on the arthritis society forum in Canada about it a LOT. Most days I want to bang my head against the wall. I cannot get over how patients/medical professionals are against even looking at AP! All they can do is scratch their heads when they see my improvements (and my increasingly better lab results). One physiotherapist at the Arthritis Society looked at me the other day and said……you don’t understand……….no one REDUCES their (conventional) medications and gets better! lol. I THINK I have her attention now, we will see.

It’s heartbreaking to read the posts on the other arthritis forums. I will keep trying to spread the word though – how can I not?

A big thank you to all of you on this site! Your posts have been so helpful to me over the months since I have found you 🙂

Diana

[notabene]

Dear Phyllis and all,

I found out about RBF from active AP participants on the Scleroderma Team Inspire website (the latter which appeared readily when searching ‘scleroderma’). I emailed several of these people, and began a dialogue about their positive experiences.

When I first started reading Team Inspire, any mention of AP would cause such a row, especially if anyone said that they were, in effect, in remission. That has subsided. When one person said her doctor called AP ‘quack medicine,’ I shot back that this was litigious language. I haven’t hear that kind of language since.

There continues to be a steady stream of questions from newbies about AP on the Scleroderma Team Inspire board and responses from those of us who follow AP, recommending the link to roadback.org

Given the lack of attention in the media, and from most doctors in the established medical community, plus lobbyists representing powerful drug companies (as John has pointed out), letting people with scleroderma, RA and other autoimmune diseases know about AP on their respective websites could be a useful contribution that we could all make.

I next came across Henry Scammell”s Scleroderma: The Proven Therapy that Can Save Your Life, and The New Arthritis Breakthrough when searching on Amazon.com. Several of the reviews were compelling and persuasive.

I was pleased when The Economist cover story and several articles described microbes and antibiotics (10 trillion human cells and 100 trillion bacterial cells in each human). Talking about the ‘humble antibiotic,’ they wrote “At the moment antibiotics are used mainly to kill infections. In the future they might have a more subtle use

[wib411]

Notabene:
Yes,the millions as well as the minions would benefit. You raise a point I have been curious about. Changing what you describe will take effort to get websites that are pro Antibiotic in the beginning of the chain that GOOGLE reports. I have had Google Alerts for RA, Rheumatoid Arthitis, remission, treatment, alternative, and various permutations of those an similar words.
Not once in 7 years did I get an alert that mentioned Antibiotic Therapy in the first five paragraphs. I found out about indirectly from an RA forum ( not RBF) contact for whom it was not working well.
The RBF Posters are self feeding. These items do not get out of the black hole. They do not get picked up as a Google hit.

If you, other RBF members want to develop the strategy and implement the specifics of getting the treatment moved up the Google list, that can be done. It will take at least one web savvy person, plus. It seems curious to me that the Foundation has not addressed this. Perhaps they have, and I missed it. Institutions (and RFB is one) are funny people. Sometimes they are hard to change.

Wib411

[lynnie_sydney]

Institutions (and RFB is one) are funny people. Sometimes they are hard to change.

Just like to mention something that some newer people may not be not aware of. The Road Back Foundation and everyone connected to it in any way (Directors and Volunteers) are (and always have been) Volunteers, fellow rheumatic patients who choose to donate their time. The Foundation also runs solely on donations. Day-to-day tasks take up a great deal of time – there are many, many things that are worked on outside of this Forum. Changing things requires time (always an issue) money (always an issue), skills and people who are around for the long haul (always an issue) and liaising between people who are geographically at a distance (again always an issue). So changing things tends to be quite a challenge for all those reasons.

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)

[Cheryl F]

@wib411 wrote:

[/color] It seems curious to me that the Foundation has not addressed this. Perhaps they have, and I missed it. Institutions (and RFB is one) are funny people. Sometimes they are hard to change.

Wib411

Hello all:

I just want to chime in to this discussion to let you know that the Directors of the Foundation share your concern and passion about getting the word out about AP therapy. The google hits issue has been one that has long plagued us and we have done a what we can to improve our position in a google search for the various disease condition names. When I first googled “scleroderma treatment” 6+ years ago, the first mention of RBF was on the 13th page!! Do you know how desperate you have to be to get to page 13???? Yep that was me six plus years ago. From time to time I do google searches on various topics to see if RBF comes up and have seen some in the first five on the list of the first page. My point, it is better but I agree that it is no where near where we would like it to be.

A longstanding goal of the Foundation is to make AP therapy a common treatment that is routinely offered to all rheumatic patients. Well I think we would all agree that meeting that goal is a long way off. In the meantime we want to ensure that information on the potential effectiveness of AP treatment is readily available.

RBF is indeed an institution, but it is one that was founded by patients just like all of us who participate on this forum, and it is currently lead by regular people who give their time to help to get the word out. RBF currently has only a handful of volunteers who service the thousands of inquiries we receive each year for AP doctors. Additionally, these same volunteers moderate this forum and make it the positive environment that it is. We have had plans of updating the RBF website and working to maximize web hits for several years, but truthfully we simply don’t have the man power. Additionally, the cost to redesign the website is significant and donations have been significantly down over the past several years.

So, if anyone would like to consider volunteering to support the mission of RBF I would love to chat with you. Six years ago, after fighting a nine month battle against my daughter’s diagnosis of systemic scleroderma, when she got better, I made the call and they put me to work returning telephone calls. Next thing I knew I was at the annual meeting of the American College of Rheumatology talking to physicians about AP (boy was that an experience, let’s just say some of them where pretty hostile).

So, please send me a PM on this system or email me at cheryl@roadback.org.

Cheryl Ferguson, President
Road Back Foundation

[Anonymous]

I am gratified for the discussion my question has generated and thank you kindly for your responses.

I am anything but tech savvy, am new to this site and far from in depth knowledgable about RA, let alone scleradoma, lupus, etc. Haven’t even gotten on antibiotics yet (first appt this Weds.) But this is something important and worthwhile, so whereas I often shy away from volunteering, I hereby volunteer to assist in some capacity in which I am able. Let me know.

Paying back and passing it forward,
Phyllis

[marg]

IN the late nineties, my daughter was diagnosed with scleroderma after seeing a number of dermatologists over several years. The doctor told her he was sorry, there was no treatment, only help to ease the symptoms. At the time my daughter was in her early thirites and engaged to be married. I could not accept the doctor’s statement about no treatment, especially after I read up on scleroderma.
I scoured the internet and came across the Road Back. At that time, I wrote to one of the Moderators and received a most kind and reassuring letter back. I will never forget the hope that gave us.
As it transpired, my daughter did not use AP or any other meds for the scleroderma which consisted of several skin lesions which were not getting worse – or better…However, years later when she developed sudden and severe RA, we knew where to turn. She started AP 3 months after onset and had great success. Within a year, she was in complete remission. We had been so focused on the RA that we did not notice at first that the SD lesions had shrunk as well.
She stays on a maintenance dose of Minocin and the SD stays about the same.
We know how lucky she has been and we are so grateful to the Road Back.
marg

How to spread the word – I talk to people I think could benefit; mixed sucess. However, anytime a “big” name on TV or other media comes on board, I rejoice, as I think that carries more validity.

[Author]

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