Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

Case reports: Stem Cell Therapy for Autonomic Nervous System Dysfunction in Two Young Patients

Discussion in 'Other Health News and Research' started by Murph, Mar 16, 2017.

  1. Murph

    Murph :)

    Messages:
    532
    Likes:
    2,705
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5346911/

    Autologous Adipose Stem Cell Therapy for Autonomic Nervous System Dysfunction in Two Young Patients

    Postural orthostatic tachycardia syndrome and neurocardiogenic syncope are clinical manifestations of autonomic nervous system dysfunction (dysautonomia) that can lead to impaired daily functions. We report two young patients presenting with dysautonomia and autoimmune disease who both received autologous adipose stem cells (ASCs) infusions. This report is the first description of ASCs therapy for patients with combined dysautonomia and autoimmune disease.

    Case 1: A 21-year-old female presented at 12 years of age with escalating severe dysautonomia with weight loss and gastrointestinal symptoms. She had elevated autoantibodies and cytokines and received multiple immune modulation therapies. Her dysautonomia was treated by volume expanders, vasoconstrictors, and beta blockers with mild improvement. She received ASCs about 2 years before this report with dramatic improvement in her dysautonomia and autoimmune symptoms with a 10 kg weight gain.

    Case 2: A 7-year-old boy presented at 2 years of age with polyarthritis. At 5 years of age, he manifested orthostatic intolerance. He received immune modulatory therapies with mild improvement. He received ASCs and showed marked improvement of his dysautonomia and immune symptoms. Dysautonomia symptoms of these two patients improved significantly after modulation of autoimmune components by ASC therapy. Favorable clinical responses of these two cases warrant further case–control studies.
     
    merylg, MEMum, ahimsa and 9 others like this.
  2. Daffodil

    Daffodil Senior Member

    Messages:
    4,922
    Likes:
    4,707
    my friend had stem cell treatment for CFS and she had remission lasting 18 months.

    I think it cost her $14K
     
    Last edited: Mar 16, 2017
    SB_1108, merylg, MEMum and 6 others like this.
  3. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,735
    Likes:
    4,379
    Southern California
    Where did she have it done if you don't mind sharing?
     
    MEMum, eljefe19 and Murph like this.
  4. Daffodil

    Daffodil Senior Member

    Messages:
    4,922
    Likes:
    4,707
    costa rica I think. I can find out the exact place if u like
     
    MEMum likes this.
  5. Theodore

    Theodore Senior Member

    Messages:
    686
    Likes:
    671
    France
    Full remission?
     
  6. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,735
    Likes:
    4,379
    Southern California
    Yes that'd be great thanks
     
  7. Daffodil

    Daffodil Senior Member

    Messages:
    4,922
    Likes:
    4,707
    ok I have asked and await the answer
     
    MEMum, eljefe19 and Jesse2233 like this.
  8. Murph

    Murph :)

    Messages:
    532
    Likes:
    2,705
    I looked for that clinic and couldn't find it... But stem cell therapy now seems to be widespread in the US.

    It's a bit under-regulated by the look of it. Lots of promises being made that can't be kept.

    This blog, from an actual stem cell laboratory, covers some of the issues in the field pretty well. And the comments on this first piece give a good sense of the effects and side effects of the treatment

    https://ipscell.com/2016/04/if-youve-had-a-stem-cell-treatment-how-was-your-experience/
    https://ipscell.com/2015/10/stem-cell-treatment-cost/

    tl;dr: caveat emptor!

    EDIT: Realising that this is such a predatory industry I went back and checked the authors of the original paper to see if they were shills. It would obviously be in the industry's interest to have published case reports of stem cells working for all sorts of illnesses. ("Research proves...") In fact they seem to be real scientists. So that's nice.
     
    Last edited: Mar 21, 2017
    ScottTriGuy likes this.
  9. IreneF

    IreneF Senior Member

    Messages:
    1,552
    Likes:
    2,563
    San Francisco
    merylg, ScottTriGuy and eljefe19 like this.
  10. eljefe19

    eljefe19

    Messages:
    483
    Likes:
    639
    Interestingly I just learned of a Russian immunomodulator, either Amixin or Cycloferon, I can't remember, that spurred stem cell production in bone marrow. I have no idea if this would have similar benefits like the above accounts.

    Personally, I think there are much better ways, currently available even, to treat this disease.
     
  11. IreneF

    IreneF Senior Member

    Messages:
    1,552
    Likes:
    2,563
    San Francisco
    Over-production of stem cells is usually a sign of malignancy.
     
  12. Daffodil

    Daffodil Senior Member

    Messages:
    4,922
    Likes:
    4,707
    that is very scary. a lot of people seem to be having off-label procedures in florida....some laws must be lax there or something.

    I guess US Stem Cell Clinics LLC is gonna be out of business soon....
     
    Last edited: Mar 22, 2017
  13. David's

    David's

    Messages:
    16
    Likes:
    55
    I went and had Stem cell infusion both IV and Intratecal and can tell you it had no effect on my symptoms and after 45k spent out of pocket decided it was not worth it. I had the three procedures done in the first six months after the illness started after a vaccine and back surgery. I was there with the young boy mentioned in the first post and he has been getting relief according to the company doing the treatment. There are clinics everywhere doing stem cell procedures in the US but it is not the same thing as the FDA will not allow them to grow and replace thus they use a same day liposuction and reinsert a small quantity. Basically a useless amount of stem cells. What I found out was people were getting procedures done for free or a reduced cost if they would refer other patients so take what you read with skepticism.
     
    Orla, Murph, Hutan and 4 others like this.
  14. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,735
    Likes:
    4,379
    Southern California
    The locations outside the US do the more effective treatment?
     
  15. MEMum

    MEMum Senior Member

    Messages:
    414
    Likes:
    2,132
    There is a thread " Interview Caroline Wyatt MS treatment" on here, it talks about her stem cell treatment in Mexico. She was treated with cyclophosphamide, and also later mentions rituximab.
     
    Hutan likes this.
  16. Daffodil

    Daffodil Senior Member

    Messages:
    4,922
    Likes:
    4,707
    in the beginning, cheney used to be affiliated with a clinic in costa rica I think....and a lot of CFS patients went there.
     
  17. David's

    David's

    Messages:
    16
    Likes:
    55
    THe locations outside the US can/will use both types of Stem cells (your own and fetus). In the US these clinics can do a same day procedure using liposuction( your own cells) and then separating the cells using centrifugal machines to harvest the stem cells. Same day procedures may get 20 million Auto Stem cells whereas the other countries may IV in 500million cells. Using your own cells is a safer bet but may not be as beneficial . Stem cells go and try to fix things in the body but when the body does not know what is wrong they cannot fix it. The Caroline Wyatt MS treatment is way different than what is on the original post. She had HSCT which is done for some autoimmune and cancer. What is done is the immune system is wiped clean so she has no immune system for a period of time(Very dangerous) and then slowly the doctors build it back using her own stem cells from her bone marrow. It seems to work for RRMS and some do it for PPMS but not many places. In the US I only know of one hospital that will do it and the FDA has to review the case. That is why people travel to Germany, Mexico, and Russia to get this done. Since it is not proven that CFS/ME is autoimmune no one would do HSCT for our disease . But basic SCT anyone will do it if you have the money .
     
    Hutan and ScottTriGuy like this.
  18. David's

    David's

    Messages:
    16
    Likes:
    55
    Cheney took a group of patients to a clinic in Costa Rica( There are a few there as medicine is not closely regulated and so all these places moved there) and as far as the clinic you can google it and find it. They do tons of advertising and put out youtube videos of all thier successes. I read the story that no one saw improvement but I said I was going anyway just because no one was helping me with CFS/ME. I chose a different clinic in Mexico because of the travel .
     
  19. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,247
    Likes:
    31,978
    Stem cell therapy can mean all sorts of things and mostly nonsense. Stem cell rescue after lethal irradiation or chemotherapy for cancers is well documented. But the stem cells are the rescue, not the treatment. Beyond that as far as I can see it is mostly cowboy stuff. And sadly a lot of 'real scientists' are cowboys. It is just that their motive is personal promotion rather than commercial gain.

    Why should a stem cell treat the particular disease someone has - rather than regrowing a spare pancreas or a second brain or too many lymphocytes? Anyone familiar with Walt Disney's film The Sorcerer's Apprentice might get the gist.
     
    Orla, Daffodil and Hutan like this.

See more popular forum discussions.

Share This Page