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Old 09-05-2011, 04:16 PM
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Harrison Harrison is offline
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(Reposted for ML from other forum)

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


ML, I am really sorry to hear about your situation. Yes, I’ll convey this as a question to Katherine. For what it’s worth, it seems rather ironic and coincidental that you shared this with me. Here’s why:

- I was on the Marshall Protocol for 3.5 years to address my systemic infection of mycoplasma pneumonia, which originated in my throat area (perhaps from intubation in 2004, though it could have been community-acquired). I battled the system and it two me two years to get the diagnosis, since our medical system is still focused on “the standard of care” and using 150 year old culture-based diagnostics, which detect 3-5% of all possible bacterial pathogens. And we now know that most chronic bacterial infections are polymicrobial!

- The MP continues to be controversial for myriad reasons, and the drop-out rate (not quite the same, but similar to the failure rate) may still be high. For me, it worked wonders. I would be DEAD now if I did not stick to it.

- Some people feel worse without D, some people feel better. We’ve seen both situations here in this community. But D is a secosteroid and a critical part of our immunity. I believe synthetic D (D2 or D3) and most other synthetic vitamins are not good for the body. I get most of my vitamins through organic food and juicing.

- There’s no question most of our innate immunity originates in our gut; it’s critical in all our metabolic processes; especially for bone growth. See my earlier posts:

http://www.adrsupport.org/forums/f50...keovers-10127/
http://www.adrsupport.org/forums/f51...79/index2.html
http://www.adrsupport.org/forums/f60...-ulcers-10655/

OK there’s more information to share, but I’ve overloaded you. Your situation sounds concerning, perhaps we should talk soon. I can recommend some things for you to consider for further testing. But will discuss with K for sure...
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"Harrison" - info (at) adrsupport.org
Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
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