I do want to clarify my entry on Antibiotic Protocol. In addition to taking my son to CA for this treatment, I have him under the care of a traditional rheumatologist where we live. While she was "aware" of the treatment when I asked her about it she said nothing to promote it. She did however agree to work with us and support our endeavor. He is at the same time taking Nsaids and doing the things the Tampa rheumy wants. The two doctors are working in conjunction with each other.
I am going to be completely honest. I promised my son that I no matter how and when this turned on him I will always be there to love and support and help him, but I will never be there to get caught in a lie giving him false hope. So here goes. I am going to be honest with you guys from the start.
I would NEVER intentionally say anything to offend anybody here. I have read other books about PsA besides the Road Back literature. There is one written by the doctors at the Ontario clinic in Canada. This is the only clinic in the world (according to this book) dedicated solely to the treatment and study of PsA. It frightened me to no end, but it is filled with highlighter and been studied and learned. I have read others. I have binders and plastic storage crates full of research. I am taking Excel classes so I can learn to graph the blood test results I have studied. And I do this knowing it may very likely all come to naught. I may not do anything that will help him one millionth of one percent. Perhaps I am just adding my name to all the others that have fought and lost. But what is a father to do? Just go to a Rheumy and "follow instructions" blindly? Please don't call me a "lamb" or put me into the category of "the uninitiated". I have seen the crush of this disease.
So let me rephrase my question....Has anybody here tried Antibiotic Protocol? I would be very interested in hearing your take away from Roadback. I would like a different point of view.
BTW to the person who knows about the Wal-Mart pharmacist in the Belize port. I am a Wal-Mart Pharmacy District Manager. I have been to that port. I bought a tube of Retin-A there and it was junk. I am also waiting to see a person who has turned blue from minocycline. And to add a fact to the conversation, Minocin is listed as a DMARD in Wal-Mart and manufacturer literature. I would love to see the license of the pharmacist in Belize. There may be a reason why he is practicing pharmacy there.
I understand your need. It is also interesting that recently there has been some very spectacular and unexpected results treating chronic back pain with antibiotics - it certainly is an interesting area. There has also been a lot of research on minocycline as a dmard in RA - and it unquestionably shows promise.
Because the road back and those sorts of antibiotic treatments most frequently require abandonment of conventional treatment, however, it’s unlikely many of us have tried it.
Dave Aus, a member who hasn’t been on the forum for close to 6 months (or more), tried it and reported slow but steady progress (he didn’t strike me as a “religious” convert by any means, steady, sound of judgement, found something that worked for him - so I think could provide an alternative perspective). As I haven’t seen him on for a long time, I’d suggest you look him up and pm him.
Good luck to you and your son, I’m not looking forward to the day when my daughter and I might have to make these decisions for her, but I’m so grateful for the options we have today compared to my parents and grandparents generation.
JenAus, our scientist? How are you? Sorry I've been away, I've been next door on the fibromyalgia site! Hope the Enbrel is still working for you!
Jen said:
I understand your need. It is also interesting that recently there has been some very spectacular and unexpected results treating with antibiotics - it certainly is an interesting area. There has also been a lot of research on minocycline as a dmard in RA - and it unquestionably shows promise.
Because the road back and those sorts of antibiotic treatments most frequently require abandonment of conventional treatment, however, it's unlikely many of us have tried it.
Dave Aus, a member who hasn't been on the forum for close to 6 months (or more), tried it and reported slow but steady progress (he didn't strike me as a "religious" convert by any means, steady, sound of judgement, found something that worked for him - so I think could provide an alternative perspective). As I haven't seen him on for a long time, I'd suggest you look him up and pm him.
Good luck to you and your son, I'm not looking forward to the day when my daughter and I might have to make these decisions for her, but I'm so grateful for the options we have today compared to my parents and grandparents generation.
SK was referring to me, and agreeing that internet research on this matter is impossible to do because of a liitle matter of a thing called SEO Spamming. There are companies who specialize in doing it. What happens is you start to research and find a massive amount of research pointed one direction. It suddenly has legitimacy that it hasn't earned.
Much of the research in this area is being done in OZ and Eastern Canada. I would look for sources in those areas. Anyone has been in this arena for a while has heard of the smurfs. I know you are not looking for a debate and I don't want one. There are many desperate people coming to theses boards, consequently we are very sensitve to alternative treatments. None of them are proven but it would be sad for all of us that someone would turn to alternative medicine as result of a promised cure.