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The Cutting Edge Find authoritative insights from medical professionals, manufacturers, and guest visitors. Also find a current list of clinical trials. This is a read-only forum.


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Old 09-04-2011, 01:26 PM
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Harrison Harrison is offline
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Exclamation Need your questions on arthritis asap!

It’s been a while since I’ve interviewed any experts for the Cutting Edge forum (been busy with my film). On Thursday, I’ll be interviewing Katherine Poehlmann, PhD, an expert in rheumatoid arthritis. See a bit more about her book here, including diagnosis and treatment. There’s a table of contents there too.

Over the years, I’ve seen several friends dead-ended by “modern” treatments that take away some of their pain, but the immune-suppressive therapy prescribed to them is not addressing the root cause of their problem. Each and every one of them on these drugs has gotten worse and it makes me sad, angry and frustrated.

This book from Dr. Poehmann provides alternative therapies -- and answers -- that have helped many people. I invite you to offer your questions to me, so I can include them in the interview. I’ve done this in the past and it has worked well, so please get me your questions relating to her book and the subject of RA soon…today if you can!

Please email, PM or reply here with your questions. Thanks.
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  #2  
Old 09-05-2011, 05:16 PM
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Red face

(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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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
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Old 09-05-2011, 10:37 PM
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Harrison,

What an opportunity! I have a couple of questions for Dr Poehlmann. BTW: If you or anyone reading this can answer them yourself... please do.

1. My father is developing an ever worsening case of rheumatoid arthritis. I have searched clinicaltrials.gov to see what research is currently being transformed into treatments for autoimmune diseases, with particular attention to lupus and rheumatoid arthritis, and have noticed a common thread; that ALL trials involve palliative care and symptom management; that is, there seem to be no imminent treatments for rheumatoid diseases that are hopeful in resulting in cures for at least a few patients. Question: Is there such research extant at a stage to which the general public would not be aware that could result in a cure for some patients? Or are we still "just" learning about the disease?

2. The "Natural foods", "Organic foods" and yes, "alternative treatments" advocates make all kinds of claims in which they claim to be able to cure everything from stage IV melanoma to making someone immune from EVER getting sick again. While I have little confidence in such claims, their logic is plausible; that is, remove toxins which the human body is not designed to manage, and the body can more effectively keep itself healthy.
- Is there any scientific research that suggests that in at least some people that an "organic" lifestyle can cure or mitigate the symptoms of rheumatoid diseases?
- While you would certainly be prohibited from publishing a list, can you mentally list specific individuals that you can show by clinically means have been cured of rheumatoid diseases with such treatments? That is, in addition to cessation of pain, they have "normal" RF, ANA, ESR, etc... levels?
- If so, are the specific biological and chemical mechanisms by which these cures occurred known? What are they?
(Harrison: I know this question seems adversarial, but it is NOT. While I challenge many assertions made by the aforementioned groups, I FULLY expect that science will one day prove many more of their assertions, even if the mechanisms have yet to be discovered)

Thanks, Jeff
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Old 09-05-2011, 10:50 PM
annapurna annapurna is offline
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Quote:
Originally Posted by jss View Post
2. The "Natural foods" and "Organic foods" advocates make all kinds of claims in which they claim to be able to cure everything from stage IV melanoma to making someone immune from EVER getting sick again. While I have little confidence in such claims, their logic is plausible; that is, remove toxins which the human body is not designed to manage, and the body can more effectively keep itself healthy. Is there any scientific research that suggests that in at least some people that an "organic" lifestyle can cure or mitigate the symptoms of rheumatoid diseases? If not, scientific research aside, what is your opinion of an "organic" lifestyle as treatment for rheumatoid diseases?
I've heard something like this before and would suggest a modification to the question. The doc who was suggesting the lifestyle change pointed out that you could imagine a person having an inflammation bucket. If you take in more things that trigger inflammation than your body can process, his theory was that you'd trigger a whole bunch of stuff that might forever remain below the point of concern if you hadn't been overloaded. His theory was to eliminate all controllable sources of inflammation and see if you could push these conditions into remission. Rich, I don't have a clean way to phrase this as a question but I'd be interested what an expert in the field thought of my doc's theory.
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Old 09-05-2011, 10:50 PM
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MeggieLynn MeggieLynn is offline
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Hi Harrison,

If you have time could you let me know about these different testing methods sometime this week? The physicain coordinating my work-up is the SI Joint fusion surgeon and he has a hard time w/believing it's this sapho syndrome because it is so rare - but unfortunately I do have ALL the classics signs for it. He's looking at this joint thinking it's got to be infected - but yet I have no fevers/chills nor any swelling/ redness over the joint. I'm afraid the next thing he'll suggest is an open culture/biopsy of it - which again will be useless if they're going to use the same culture methods.

The bone biopsy initially cultured out two gram neg bacilli, a yeast, and a mold. The ID doc was convinced it was a contaminate because the path report did not show any WBC's in the specimen. This then lead to the fluid aspiration done 7 days ago which so far hasn't grown anything.

I think the main problem with the Marshall protocol is that there are no really good clinical trials for support of the theory and I think most infectious disease MD's would argue vehemently against the use of low-dose pulsed antibiotics - because of the stance that it would promote more antibiotic resistance.

I do really really like Professor Art Ayers theory about inflammation and autoimmunity. It makes a lot of sense in my case with the gut dysbiosis from my fibro. I had the IBS diagnosis 8 years prior to the fibro dx. In any case, since following his recommended diet and using the above supplements, my pain and gait have improved somewhat already. I did buy a blendtec blender to try to get a higher concentration of nutrient-dense fruits and veggies in. Also eating different forms of yogurt for the different cultures. He insists our resident gut flora is way underpopulated. . . . I could go on and on, but I won't. He could be a good candidate your next expert interview. Anyways, I'm worn from reading all this stuff. Take care.

ML
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*C4-5 and C5-6 Mild & moderate posterior broad-based disc bulges w/small posterior end plate osteophytes, mild spinal canal stenosis.
*C6-7 Broad-based posterior disc bulge w/small focal posterior central protrusion mildly indenting the anterior thecal sac, no canal or neural foraminal stenosis.
*SI Joint issues, Fibromyalgia, Chronic Myofascial Pain, Neurogenic Thoracic Outlet Syndrome
*Tx's-PT, 2 ESI's Interlaminar & transforaminal, 2 SI Joint steroid injections, Failed LBB for SI Joint
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  #6  
Old 09-07-2011, 10:11 AM
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Harrison Harrison is offline
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Thanks everyone, I transposed your questions. It will take me some time to conduct the interview, edit it and publish it...give me me a few months.
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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
Donate www.arthropatient.org/about/donate
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