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Wondering what the different “roads” look like.
For me, it's A.P. mwf and daily Sambucol.Shouldn't there be some kind of running survey going on with this treatment? I mean, this seems to be the repository of all A.P. knowledge and treatment. So, it would seem that a benefit to all of us would be some kind of organized observation of the A.P. treatment. Eventually, R.B. could present this as a case for A.P. Otherwise it appears as a haphazard treatment plan with no discernable success rate/stories.
Jenn
Jenn,
I take 200mg brand minocin MWF, probiotics and iron. I do the lemon/olive oil drink on and off and just added lecithin last week because I read it might be helpful for periperal neuropathy which I also have.
I do feel great! 2006 was my year of sickness, 2007 was my year of getting better and now in 2008 I feel great.
I take Minocin 100 mg twice daily, have been on it for 16 months, and am doing well. I am starting to see improvements in my fingers over the last several months, so I am hopeful that I'll continue (hands were where my first SD symptoms showed up).
Before I started Minocin, I weaned myself off prednisone, plaquenil, and D-penicillamine, what the rheumatologists wanted me to take. They weren't doing anything to slow down my progression of symptoms.
Jenn, I think you have a great idea. And I have been thinking of creating a database of those who are on AP, so we can start to track who responds and how well. Because we might start seeing patterns like if you've got SD but are negative for ANA and ACA, you tend to have _____response to AP. If you have RA, and you have no joint damage at the time of starting AP, you have ___ response to AP. It would be nice to figure out what the predictors of good response to AP are. How could we do this? Create forms and ask people to participate in the AP registry?
The Patient Testimonials page has lots of success stories. I think it would be hard to make a standard survey for our AP treatment, because of how different everyone's symptoms (and therefore reasons for being on AP) are. Even the antibiotics and doses are different.
Personally, I'm on 3 different antibiotics Monday and Thursday. I don't have RA, but the L-form bug (TH1). Took about 6 months to feel better the first time I took them. This time, it's taken less than 2 months to feel better (still not 100% yet though). I also believe the diet I'm on makes a big difference in my recovery. Seems to me, my body can concentrate on defeating my L-form, and not have to deal with sensitivities to dairy and gluten too, as well as sugars making things worse for everything.
Manda.
Hi
Thats why these illnesses do differ –If one has systemic or diffuse scleroderma other meds really should be taken to treat other symptoms and support vital organs such as ACE inhibitors for blood pressure and kidneys –calcium channel blockers for Raynauds –anti gerd meds –etc etc —Informal surveys have no value at all unless they are run by professional medical people
richie
Dear Jenn,
The problem is with over 100 forms of arthritis and so many of us with multiple diseases/conditions, and who knows how many of them misdiagnosed, it would be difficult to make a meaningful track. However, the Foundation could probably help with some type of sorting.
My chronic reactive arthritis started six months after spinal surgery. It started in the palm of my left hand and moved all over my body. When I was referred to a rheumatologist, I was told it was not RA because it is not symmetrical. I refused the rheumy drugs and found roadback about a year later. My case was so bad I had to close my business and retire. I couldn't go back to work now, but at least I'm not in as much severe pain as I was. I have to sleep a lot–and have had to train myself to know when I am tired. Often when the pain gets more intense, I take a nap and that helps.
I see others here have a lot of other conditions. It seems to me that no one really knows was arthritis is–it appears to be as complicated as the various forms of cancer. On my worst days, I have said that arthritis doesn't kill you, it just makes you wish it would–joking, of course. While the medical community works on figuring all this out, I'm just thankful for the Roadback Foundation for spreading to word about AP as it is the only thing that has let me keep my sanity and given me some quality of life, albeit on an intermittent basis.
That is why our networking is so helpful. All this is an experiment and we have different reactions to medication, different complicating diseases within the arthritis family as well as other diseases, etc.
I don't mean to throw a wet blanket on your suggestions at all, but I think it would be a daunting task. Maybe whoever is monitoring these discussion groups can take this inquiry back to the Board and see whether some tracking could be done.
P.S. to Jenn. I normally take 100 mg in the am and 100 mg in the pm three days a week and Spectrabiotic on the other days. In addition, I take celebrex (was taking it with the minocycline but I'm trying to cut back on it). As far as I know, I have no conditions other than chronic reactive arthritis. My neck surgery left me with permanent nerve damage.
I also wonder if I have more than one type of arthritis as my right wrist which was giving me a tremendous amount of pain for years now has virtually no range of motion, rarely hurts, and an X-Ray shows it has calcified into place. That sounds more like RA to me. I'm in my early sixties, so I'm wondering if indeed there could be more than one form of arthritis going on. Given my muscle aches, for years my neurologist has suspected some fibromyalgia. Never had a firm diagnosis for that. My mother had arthritis from about age 50 or so on and it looked like RA in her finger joints. I remember her as always having a heating pad on her lower back. My arthritis started around age 50, too, but in a totally different way.
I think it's the same problem for all of us, but that we're responding differently due to our genetics and varying stress levels. It's like cancer… whichever type it is, it's still cancer.
I don't understand the reluctance of some here to be more visable to the medical community.
Jenn
Perhaps you are referring to those who seek self-medication. I don't think that is smart. However, for many of us the medical community has been negative about minocin. I hand to hunt for a rheumy who would prescribe it and then he was negative about it–said he had one patient on it for 1 months with no results. Obviously, he hadn't paid attention to the protocol. Fortunately, my neurologist is so impressed with my results that he is starting other patients on it–I'm just wondering why he waited so many years. I have recommended this treatment to a lot of people (they look at me as if I am one of these miracle cure nuts) and I warn them their doctors will probably be reluctant but to perservere. If you read Henry Scammel's book, you will learn about the problem: drug companies don't make money on minocin. They make lots of money on cortisone and the strong drugs most rheumies prescribe. Its politics!*!
I agree that there is a problem in that other symptoms often have to be treated simultaneously, even Dr. Brown used anti-inflammatories to clear the path for the abx. In addition, many of us take supplements and keep special diets. Is there anyone that is exclusively on AP alone?
Also, what would the parameters of “success” be? Labs, x-rays, return to normal ADL's? Is there a time frame, and what about those whose symptoms recur after 5 yrs or so?I would be interested to see who benefits the most from AP/MP. I'd like to be able to show scientific evidence that AP works best when used early, and not as a last resort or to humor a patient. Again, we would need parameters set for success vs. failure.
Jenn has a point, tho, these diseases are different in so many ways, and so are the treatments. Is the lack of standard abx and dosages one of the problems that doctors following a more conventional approach have with AP? Wish we could survey the doctors and find out their medical reasons for dismissing AP, besides their obvious opinion that AI dxs are not caused by infections.
I really do wish there was more for us to do besides share our knowledge and experiences with each other. Logistically, it's just not feasible for us to get together.
It would be great if we had a lobby, but it would look like David and Goliath with us against the pharmies and groups like the Arthritis Foundation. Working WITH these big groups would be even better, but money and competition won't allow it.linda
I take 100mg. of Minocin MWF and another one on Sat. alternate weeks. Also take Aleve with my eveing meal but have been trying to cut that back to every other day. Took Sulfasalazine twice a day at the beginning ( there was a time when I was on four a day before AP) Now take one Sulfasalazine a day. Take probiotics, and lots of vitamins, flaxseed oil etc.
I can honestly say that I'm much improved since I started AP four years ago. Am so grateful for the Roadback. Rose
I take 100mg mino twice a day X 7. I also take prilosec each morning, thats it for proscriptions. I also take a joint compound, lecithin, fish oil, and multi vit. along with two Advil in the morning with breakfast. Pobiotics at lunch. I would like to take something more effective as an anti-inflamitory but previously had watermelon stomach, I just started the two Advil recently after almost a year off any NSAIDs. I have looked at the diets and don't doubt that they are probably helpful but have not made the leap to one. I just try to eat well.
This program has worked well for and with any luck will continue to do so.
[user=11]linda[/user] wrote:
It would be great if we had a lobby, but it would look like David and Goliath with us against the pharmies and groups like the Arthritis Foundation.
lindaOh, but Linda… you seem to have forgotten that David won the battle. 😉
Jenn
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