Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Vitamin D

Hi Sue,
I read your post with great sadness because you are struggling mightily. Please consider what I have to say with an open mind. I was diagnosed with AS in 1998 after about 10 years of suffering. I went to a rhuemy for a few visits until I figured out he had no idea what he was doing. By the grace of God I found a book that changed my world. You see if one is to conquer any disease it must be understood first. The name of this book is "The New Arthritis Breakthrough" by Henry Scammell. The treatment outlined in the book is based on the theory that arthritic conditions are triggered by infections. The treatment for these conditions then is an antibiotic which I have taken and am still taking on and off with much success. I know that you have an infection because you list other problems you have,diabetes & psoriasis both bring caused by infections. You see we have an incorrect concept about infections. We think that if we have an infection and we treat it with an antibiotic it goes away. At times possibly but most times no. I had a staph infection when I was 11 - 12 years old. Today I am 60 and still have it in me forever. So I have to take minocycline to keep it in check which keeps my AS in check.
For more info go to Wikipedia and look up Dr Thomas McPherson Brown. In his bio you will see a link to a video documentary. Click on that link and view a 53 min video. Also "Road Back.org" and used New Arthritis Breadthrough books can be bought for about $5.00 at half.com. I have about 8 copies floating around for people to read.

Slicer, that is true for "reactive arthritis" but no proof for the other spondyloarthopathies, at least not in the classic sense that you describe.

I've had GI issues (mom has since told me when i asked) since I was born; i think i was born with a bad gut microbiome. thus i am looking at the research on fecal transplants, especially pill form. But its not so so simple; while it works well for C. diff, nothing to say that my appendix won't replenish my gut with bad bacteria again....its too new of a field right now...but promising.

In the infectious disease class that I teach, we discussed fecal transplants vs probiotics vs prebiotics vs antibiotics. From everything I've read, antibiotics seem the most risky unless one knows for sure that they have reactive arthritis...and reactive arthritis is an avenue my rheumy and I explored. Too, studies indicate it may be easiest to fix a bad gut microbiome through pre- and pro-biotics in younger children (that have gone through C sections) than in adults....our (gut) micro biomes seem more recalcitrant microbiome.

Still, I'd prefer to go the prebiotic route first, probiotic second, and antibiotic last. Just my preference based on everything that I've read. One of these days I'll post the papers I've read on the research portion of the forum.

thanks for the info though.

sue- your situation and mine are similar. so I follow you closely. You said it well. I had very bad teeth as a child. Could that have begun my problems.
Also, some of the Iowa wells, very shallow, found hog protein in the mix....

I took a strong ANTI-BIOTIC in January for this flu-pneumonia, and my diarrhea went away for a month...but it is now back...

safe travels this winter.

Hi, slicer:

AS is caused by a germ that we really cannot eliminate. I have recommended RBF many times because the combination of NSD plus antibiotics has worked miracles for me.

Whether either Dr. Brown or Professor Ebringer is correct is really a moot issue when the protocols really work so well.

HEALTH,
John

I followed the link to Dr Thomas McPherson, then put in a search under criteria : 'Should tetracycline treatment be used more extensively for rheumatoid arthritis?' The resulting further links were particularly interesting as research and authorship showed Rbt Inman and MA Stone. Dug in deeper, as wanted to ascertain if the M Stone / M A Stone were one and the same and was this Dr Millicent Stone. Yes. My very own and very smart rheumatologist. Unfortunately I am in France and Dr Stone is in England. (Dr Stone moved from Canada to the UK some several years ago.)

I then tracked to more recent studies from the Inman / Stone studies of 2000 - 2005, and found this dd 2011.

http://www.hindawi.com/journals/ijr/2011/585497/

So interest in the use of antibiotics, namely doxicycline, minocycline and tetracycline is still evident, though is felt to benefit too few patients to be a really viable protocol.

I look forward to viewing the McPherson video.

Interesting thread, and very glad to see involvement from Stone and Inman - have huge respect for both, two very fine rheumatologists.

thanks Molly. that's been the impression I've had from what I've read. The reviews I read suggested pre- and pro- biopics and one day fecal transplants over antibiotics for most.

I think many of us agree that bacteria are at the root of it. but how to "treat" is where we are now.

Hi Lon,
read your post and have some thoughts to share. First your anti-biotic treatment solved the diarrhea issues you have. This would be an indication that what you deal with is a bacterial problem. After being off the antibiotic a while the diarrhea returns is an indication that the bacteria you deal with has repopulated to the level that it causes you problems. A thought that I have in treating this would be to use the antibiotic for a period of time to knock down the bacteria and then introduce the correct bacteria via the fecal implant.
Your question about teeth and your condition I believe the answer is no. The teeth can harbor bacteria that can enter the body via the blood stream causing heart problems, joint problems and soft tissue problems. The more likely answer is the hog being the source of mycoplasma. Pigs can get mycoplasma arthritis and other conditions associated with mycoplasma infections. That would be my guess.
Dr Thomas Brown did treat spondyloarthropathy with minocycline with success even though there may be no studies. Two reasons. Money being one. All research is bought and paid for. If money cannot be made then research will not be done. Minocycline costs about $30.00 per month. That will not pay for any research. Secondly the research of choice is a double blind test. This will not work with antibiotic because it will take longer than 6 months to make a difference.

Hi Possi,
just a few thoughts for you. Info on vit d can be found @ http://www.vitamindcouncil.org/ I personally take 15000 units per day and up to 40000 per day (one week or less) if I feel a cold or flu coming on.
In regards to your husband who has RA and asthma I have some thoughts for your consideration. I am of the strong belief that RA is caused by a bacterial infection and the proper way to treat it is with antibiotics. I know first hand because I have AS and treat it with minocycline and nothing else. Now there is a doctor in Madison Wi. @ UW treating asthma with antibiotics because there is evidence that it can be caused by chlamydia infection. The logical conclusion would be that your husbands RA and asthma are caused by the same infection. Treat the infection and both problems will subside. The website for asthma is http://www.asthmastory.com/ and other links are available from that website. Treating asthma is a shorter term treatment of antibiotics that RA. Treating RA with minocycline may take 1-3 years.

Hope this is of some value to you and gives you some food for thought.
Slicer

Hey DragonSlayer,
So good to hear from another person who has been helped by RBF. I want to assure you that this "germ" you refer to is actually a bacteria. It can be one of many different kinds of bacterial infections. Dr. Brown was under the impression that it was mycoplasma but I think it can be any infection paired with a gene that triggers a condition. The last few years I have studied info on the internet and asked many people questions about their health and found some amazing things.
Bacterial infections play a huge role in our health. Did you ever notice that people with health problems often times have multiple issues. People with RA often have asthma, thyroid,eye,skin, psychological and other problems. That's because they are triggered by the same thing. Bacterial infection.
I see that you like to do research by your posts. Try this.
Google minocycline and macular degeneration, ALS,schizophrenia. Also google infection and anxiety, bipolar, excessive compulsive, panic,schizophrenia,heart disease,thyroid and I'm sure there are many more. In fact I believe that Alzheimers and dementia can be included in this list. The older generation that has the majority of the last two conditions is the first generation to receive antibiotic for infections that previously killed them. What we need to understand is that in many cases we NEVER get rid of the infection. It becomes a sub-clinical infection and eventually creates the health issues we have later in life.

Keep up your recommendation of RBF and hope I inspire you to dig deeper.
Slicer

Molly,
the reason antibiotics don't fare so well in trials is the 6 month double blind test is utilized. That is not long enough for the antibiotic to work. The infections that cause RA and spondalitis may have been in us for years and require a long time to eradicate. Antibiotics worked for me and many others. Dr Brown treated 10000 during his lifetime with great success.

Slicer