ADRSupport Community - Need your questions on arthritis asap!

Hi Harrison,

I may be soon having to follow in the ranks of the dead-ended. I not have posted since the first week of August regarding my SI Joint because I've been undergoing a long and tedious work-up for it. It's more than likely coming down to be part a really rare autoimmune syndrome known as SAPHO SYDROME. It involves the skin and bones. I've had a rash on my hands, feet and legs since last December. As I said the CT scan of my pelvic joint was quite shocking. That lead to my visits to a Rheumatologist, Infectious disease doctor, a bone biopsy, joint aspiration, and bone scan. The bone scan showed inflammation in the SI Joint, right sterno-clavicular bone, right distal femur, and all of my thoracic spine. The only disease that could include all the above is this SAPHO SYNDROME and the only treatment they can offer are the usual immune-suppressing drugs like methotrexate or the biologics like Orencia or Enbrel.

My back is sort of up against a wall here. I don't want to take these drugs but I may not have much choice. The destruction in that SI Joint was pretty impressive looking. They also offered me Fosamax to take - which I did say no thank you to - there's the question whether this drug will just make your bones more brittle in the long term. I told my doc in addition to my Ca/Mag/Vit D supplements, I've added lactoferrin, Vitamin K2, and Strontium Citrate.

I have read about this infectious disease angle as being the cause of autoimmunity while reading about the Marshall Protocol. I think it will take a really long time for mainstream medicine to buy into this theory. I did find some really interesting information on website/blog, put together by Professor Art Ayer, a molecular biologist from Idaho - Cooling Inflammation: osteoblast. It's absolutely loaded with information and will take you days to go through it. His bottom-line premise is that most chronic diseases, including inflammation and autoimmunity begin in the gut. When I brought some of this information to one of the MD's involved in my case, he just wouldn't buy into it. So I'm extremely frustrated in trying to find alternatives to deal with my situation.

One of my main questions is regarding Vitamin D supplemetation. I'm reading conflicting things about that as well - that too much can cause more harm in the long-term. It has to do with the VDR receptor (and w/pathogens) and that high in high doses it actually acts as a steroid (which can preciptate bone loss). I've been on high doses for years per my fibro doc recommendations. Can you see if this researcher has something to say about that. Thank you.

ML