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Thread: 51, SEVERE RA, out of med options...seeking effective stem cell therapy - HELP!

  1. #1
    Join Date
    Aug 2014
    Location
    west coast, BC
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    2

    Red face 51, SEVERE RA, out of med options...seeking effective stem cell therapy - HELP!

    Hi everyone

    Not many people die directly of RA, but I'm told that will happen to me without intervention. My disease is severe and refractory. Not something I want to hear, but my rheumatologist tells me it's the worst he's seen. I have developed serious antibodies to biologics and DMARD's don't work for me. That leaves Prednisone which brings on a host of side effects. My body sucks but my brain is still good so I am researching, seeking before this disease knocks out my internal organs too! Have lots to live for still! And if I can get the inflammation under control I am out and about enjoying life! In a few weeks my husband and I will be celebrating our 30th anniversary so I am very blessed to have had a partner who has stood with me through many years (20) of illness, pain and multiple surgeries.

    I've been in contact with Dr. Burt in Chicago where they treat RA with a complete allogenic stem cell treatment. That is the riskiest, most expensive option I've seen (probably the best available though and he is very experienced)... But Up to 200k USD (if all goes well and if I have a sibling donor match) and I'm Canadian...no insurance in US. I cannot find any stem cell treatment in Canada. I've looked into StemGenex in LA, that's autologous, not FDA approved, not sure of results, mostly anecdotal. I was excited about Tigenix in Belgium. They were developing a stem cell treatment for RA. Clinicals trials were done on patients with severe RA, but now that they are trying to bring it to market they are targeting newly diagnosed RA patients and not answering my emails. I've considered the stem cell institute in Panama but read mixed reviews about mesenchymal stem cell transplants.

    I'm also interested in finding out effective stem cell treatment for OA in my hip and knee so I can avoid more surgery!

    So any advice and direction would be much appreciated here! I am on my own researching so I need all the help I can get! Does anyone have any other ideas, direction, experience, knowledge they can share with me?

    Thank you!
    Last edited by Kristin G.; 08-12-2014 at 11:28 PM.

  2. #2

  3. #3
    Join Date
    Aug 2014
    Location
    west coast, BC
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    2

    Default thanks Grimm

    I tried the Minocycline treatment for about 18 months. I think it was around 12 years ago. I was one of the rare people who developed hyper pigmentation and was told to stop as it didn't seem to be doing anything in terms of improving my RA. I've discussed it again with my rheumatologist but it seems a bit riskier now as I've also encountered C-Diff and tend to try and avoid antibiotics as much as possible now. It is fascinating though and I have read through many accounts on the roadback.org Great website. Thank you for sharing this! Have you benefited from this yourself?

  4. #4

    Default R.A.

    Kristin,

    I don't have R.A. , I do lots of researching and thought the links would be helpful.

    Have you looked at Lyme disease ?? It's a really crazy disease.
    Many with lyme were diagnosed with R.A. and some with M.S.

    I've had/have it for a very long time.

    http://flash.lymenet.org/scripts/ult...=0;DaysPrune=0

    http://www.lymenet.org/BurrGuide200810.pdf

  5. #5
    Join Date
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    Default

    Kristin G - I have to admit to having been shocked at the price tag for Dr. Burt's treatment. His treatment consists of killing off your immune system if I'm correct does it not? That is risky, but so is living with your disease. What is Dr. Burt's success rate? Are all patients getting good results or just some? How about long term? At 200K I would want to know every single detail of everything! One MS patient I know had to pay $10K+ out of pocket being tested to try to qualify for Dr. Burt's clinical trial, only to find out he couldn't qualify. I would hope that the 200K price tag means that this is a guaranteed treatment and not a clinical trial with exclusions.



    Here are some interesting articles from Dr. Centeno:

    http://www.regenexx.com/category/rhe...d-arthritis-2/

    I don't know if you've contacted him about your OA. He may also know of new options for RA that I'm not aware of.
    First treatment in 2007. Pioneering ever since.

    Barbara

  6. #6
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    Default

    Kristen G - You might want to check out Dr. Nobel.

    https://www.youtube.com/watch?v=QsXvTBCPiAY
    First treatment in 2007. Pioneering ever since.

    Barbara

  7. #7
    Join Date
    Nov 2014
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    Pollock Pines, CA (near lake tahoe)
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    Default RA stem cell treatment

    Kristen G. I just returned from the Stem Cell Rejuvenation Center in Phoenix a week ago. Their clinic is Patient Supported Autologous Stem Cell and PRP Therapies. Not a Trial. I don't have RA. I am a Heart Patient using my own stem cells to repair my severely damaged heart. My treatment cost $7600.00.

    I think it's worth your time to make a phone call to see what they can offer.

    I'm happy to share my experiences at this clinic.

    Marc

  8. #8
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    Default

    Please do share your experiences. Will you be having follow up testing in a few months or how will you monitor yourself to know if the treatment has helped? I am not sure what you mean by "Patient Supported". Does that just mean that you pay for your own treatment? Thank you for posting.
    First treatment in 2007. Pioneering ever since.

    Barbara

  9. #9
    Join Date
    Nov 2014
    Location
    Pollock Pines, CA (near lake tahoe)
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    Default RA stem cell treatment

    Yes "Patient Supported" means you are paying for your own treatment. It's not a Trial so you are guaranteed to be getting your own stem cells (unrejectable). All treatments at the Phoenix Clinic cost $7600. They harvest as much fat tissue as they can for processing down to just stem cells in that same clinic by liposuction. They were able to get 170cc of tissue from me. The first clinic I went to in Silicon Valley, CA took 35cc and I paid $7000. Pretty big difference. The stem cells in Phoenix were returned to me in 3 different ways (compared to my first treatment in silicon valley where they only returned the cells to me via IV). The 3 ways were IV, Nasal Inhaler and regular shots with a needle at the bodies Heart Acupuncture points.

    I get regular Echo Cardiograms and Nuclear Heart Stress Tests to measure my Heart Ejection Fraction. That way we have a baseline as the what my heart compression is so we know what improvement each treatment is giving. I am scheduled for a Nuclear Heart Stress test this next week to get my current baseline Heart Ejection Fraction. It was 13% in January. It was 18% in May. I'll post the new number as soon as I get it next week.

    Feel free to ask any questions

    Marc

  10. #10
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    Default

    Thank you Marc. Even if the number is not where you want it, give it some time. I have not had a WOW moment with the last 2 treatments I've had, but they were by far the best treatments I've ever had. Improvement has been gradual, but highly beneficial for me.
    First treatment in 2007. Pioneering ever since.

    Barbara

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