Individual with PPMS Shares His Experience of Undergoing Stem Cell Therapy

Individual with PPMS Shares His Experience of Undergoing Stem Cell Therapy

Geoff Flynn, 42, was diagnosed with multiple sclerosis (MS) two and a half years ago. As unsettling as that diagnosis was, more troubling — both then and now — were the five long years of struggle it took for him to get a proper evaluation as to the cause of his neurological symptoms.

“The first thing I noticed was that, when I was sitting, if I tilted my head up I felt like I was going to pass out. Slowly over time walking got more difficult, fatigue increased, and my bladder got more impatient. I realized fairly early on that my symptoms matched many that come along with MS,” Flynn, of Alberta, Canada, said to Multiple Sclerosis News Today.

At CTCI
Geoff Flynn with nurses in Israel during his stem cell therapy.

His doctors dismissed his concerns for a long time, focusing on cardiac and circulatory problems as the likely cause. So Flynn began to research his symptoms on his own, and ultimately asked his doctor to perform an MRI (magnetic resonance imaging) scan, an established method of confirming the lesions that typify MS. The MRI revealed lesions on the brain, and his physician finally came to diagnose what, for Flynn, was obvious: he had MS.

Not satisfied with the care he received at a nearby MS clinic, particularly because it offered no treatment due to the progressive nature of his MS, Flynn continued researching his disease and options. He said that he eventually “stumbled upon a website by George Goss which is packed with information,” and increasingly looked at stem cell therapy as a promising route. “And finally a paper from the annals of hematology solidified my decision to pursue HSCT [hematopoietic stem cell transplantation],” he said.

The paper described a single-center study conducted in Russia by researchers at the Pirogov National Medical Surgical Center. The clinical trial included 43 individuals with relapsing-remitting MS (RRMS), and 56 with progressive MS, who underwent high-dose immunosuppressive therapy and autologous HSCT. Because Flynn had primary progressive MS (PPMS), the study was of particular interest. Some researchers and clinicians doubt that PPMS is suitable for stem cell treatment, but all but one of the people in this trial reported disease improvement or stabilization six months after chemotherapy and transplant. Even more important, the gains were long term. Eight years after undergoing the therapy, only 16.7 percent of study participants reported MS progression.

Flynn was convinced by these results that chemotherapy coupled with stem cell treatment would help him. “The next step was figuring where to have it done,” he said. “I discovered that only two clinics will treat PPMS. One in Russia, and one in Israel. Israel said they could get me in 2016, for Russia the wait was till 2018.” His decision was made.

Flynn was able to schedule the procedure in Israel for October 2015. The next hurdle was covering the cost, he said, which in Russia was about $40,000 U.S. dollars, but in Israel would be as high as $126,000. Flynn raised money via an online fundraiser, and his parents covered the rest of his charges. “The online fundraiser was a big help and I was quite touched by the generosity of others, both family, friends and people I’ve never met,” he said.

Doctors began the procedure on Oct. 7 at the International Center for Cell Therapy & Cancer Immunotherapy in Tel Aviv, Israel.

Treatment started with Flynn taking several medications: trimethoprim/sulfamethoxazole, omeprazole, acyclovir and allopurinol. On the second day, a doctor inserted a picc line into a vein near his elbow to deliver chemotherapy.

The medication alemtuzumab, a humanized monoclonal antibody, began on Oct. 10, followed by a second and larger dose through the picc line the following day. Alemtuzumab is given prior to the bone marrow aspiration to remove overactive T-cells as a preparatory step to the stem cell transplantation, so that those cells are not among the harvested stem cells. Doctors performed the bone marrow aspiration on Oct. 12, and began chemotherapy.

Fludarabine and cyclophosphamide were the drugs for this phase, two powerful anti-cancer medications typically used to treat leukemia. That day was followed by a second day of chemotherapy, and then, at last, the final treatment. “On the 14th I got my stem cells back. After that it’s just wait and don’t do anything till your immune system shows it’s on the mend,” he said.

Flynn and his parents, who had accompanied him to Israel, stayed at a hotel in the same building as the clinic. Doctors monitored his progress through blood tests, and he continued to take medication to stimulate the bone marrow and to prevent infections. On Nov. 3, less than a month after the procedure’s start, he returned home.

Due to his immunocompromised state, Flynn said that he avoided people due to the risk of infections. A hematologist monitored his blood count until it returned to safe levels.

The stem cell therapy helped, largely by stopping progression, he said, but it couldn’t return what had been lost to years without treatment. Some symptoms have improved, others have remained the same. “What I noticed immediately was my fatigue is gone. Also the chronic pain in my eyes and feet had disappeared. Aside from that, nothing. My walking and balance are still poor, and my bladder still very temperamental and insistent,” he said.

“My own theory is that the benefits I see in pain and fatigue are because the disease is no longer active, but there’s no change to the damage done — so my walking, balance, etc., are still lacking.”

Flynn left his job as a seismic data processor in September 2015 and remains on disability due to fatigue. But he at least is back at the gym, working his body as best he can. That’s something he feels would have been impossible before the stem cell therapy.

Healthcare needs to change, he said, and healthcare professionals need to listen to patients’ symptoms more openly so that proper diagnosis and treatment begin sooner. “Basically, I think I have been failed by the healthcare system at every turn,” he concluded. “This procedure, if done as close to the start as possible, could prevent disability.”

68 comments

  1. Andrea kaiser says:

    HSCT. needs more media coverage. People need to know of it’s possibilities.

    I am going to Isreal in March to have HSCT,

    • Eddie Nash says:

      Yes HSCT does indeed include chemo.
      http://www.ncbi.nlm.nih.gov/pubmed/?term=MS+HSCT+Fedorenko

      Hematopoietic Stem Cell Transplantation (HSCT) – All HSCT protocols for the treatment of autoimmune disorders, and MS specifically, ablate self-intolerant autoreactive lymphocytes in the body that are responsible for the underlying nerve damage / destruction. HSCT protocols run a spectrum from complete in-vivo lympocyte ablation (the myeloablative protocols) to partial in-vivo lymphoablation (non-myeloablative protocols also sometime referred to as “Reduced Intensity Conditioning” (RIC) regimens).

  2. Cynthia Phillips says:

    The MS Society has
    betrayed us, probably because if we all get well
    they lose their funding!

    I am having hsct in May
    in Puebla Mexico, a world
    class clinic. My results will probably just halting
    the progress because my
    myelin is very damaged
    due to the fact that the
    MS Society never mentions hsct so I just
    learned about it. My hope
    is that after progression
    is stopped that myelin
    repair drugs will be perfected. For people
    who don’t
    have much damage to
    their myelin hsct can be
    a cure!

  3. Deanna says:

    Through George Goss’s blog is also how I discovered hsct when my husband was diagnosed three years ago. He was treated by Dr. Burt last year in Chicago. Everyone diagnosed should be told about hsct by their doctors.

  4. Shasha says:

    If they were concerned over his heart/blood vessels/bladder this is what helped me:
    Lyme may affect the heart. Ca may clog blood vessels. Taking Vit K2 may help Ca recycled by Vit D get put into the bones instead of tissues/blood vessels. EDTA/DMPS IV chelations unclog my blood vessels/lower inflammation/lower free radicals/remove heavy metals that can block thyroid and chemical reactions. Dairy gave me irritable bladder and gluten irritable bowel. NO gluten/hidden gluten/dairy/soy/sugar/GMO…vitamins/good oils/minerals…LDN..detoxing help me. I can’t have heated oils/coconut oil/olive oil/flax/dehydrated food. I need good oils like fish oil which thins blood and helps the immune system. I rebuild cells by no gluten helping heal my intestines so they absorb more nutrients/good oils. Eating gluten may allow damage again to intestines so any help from stem cells may be lost.

  5. Carol Ols Vera says:

    I too am an MS surviver and had HSCT in February 2014 after being diagnosed in February 2013. I too found the HSCT Forum on FB and the endless knowledge & research of George Goss 3 years ago. As I had stubbled across HSCT so early after being diagnosed I had not started DMDs ( disease modifying drugs) & I weighed up the future of a life time of DMDs (to maybe slow MS only if I was RRMS) against 4 days of chemo.. (That gave me a chance of HALTing it in its tracks) It was a no brainer for me. I am 2years post HSCT, still drug free, no new or active lesions. This is unbelievable as I went from an EDSS of 2 to an EDSS of 4 in the 12 months from dx to HSCT, so to be now an EDSS of 2 again and to not have gotten any worse means I HALTed my MS progression.

    • Shasha says:

      Maybe the Chemo knocks Lyme out of the body/brain. Some MS people may get Lyme also due to their immune system being low. I have seem Chemo used instead of antibiotics for Lyme. Tests may not work to diagnose Lyme/coinfections unless you do Electrodermal testing.

  6. Vicki Wilson says:

    #HSCT – I’ve had HSCT for PPMS, almost 2 1/2 years ago in Russia. It has stopped my progression and I’ve experienced many improvements. I hope some day soon this treatment will be made available for all with MS, and insurance will cover it. It’s a game changer! My only regret is I didn’t do it sooner.

  7. Julie List says:

    I had HSCT in June 2015 at Kings College in London on the NHS. It’s still too early to see major improvements but I have seen some minor ones.
    The important thing for me is that I am not going to get any worse.
    Progression has stopped.

    • Simran says:

      Hi Julie
      I was wondering how did you get on the trial at Kings? Is there a strict criteria for this?

      Kind Regards
      Simran

  8. Ally grant says:

    I underwent HSCT in Puebla Mexico in November 2015 . The improvements I have had already are nothing short of amazing. I am so glad that I did my own research and came upon HSCT as I wouldn’t trust MS Australia , the MSRA nor my neurologist to provide me with any proper information regarding the treatment !

    • Fred says:

      I’m very happy for you.would you be kind and send me the contact info. For this clinic in Mexico ,as I’m considering it
      Could you also tell me how expensive it is
      Thank you and God bless you

    • Arshad says:

      I am a 48 year male being diagnosed with PPMS in 2004 and wheelchair bound for over six years. Do you think if HSCT will be of any benefit, if yes then what would be the most appropriate venue and the associated costs

  9. Lindy Aragon says:

    My son just returned from Clinica Ruiz in Puebla , MX where he received HSCT. It is a game-changer for MS patients. Although he has been diagnosed for more than 10 years, he has already seen results – fatigue is gone; brain fog is gone. It was immediate for him – the day after the transplant. I urge all MS patients to educate themselves through HSCT websites and FB pages. People like George Goss are doing an amazing service to mankind by getting the word out about HSCT. MS patients, do not delay acquiring this knowledge and seeking HSCT treatment. Look beyond the NMSS and your neurologists – most of them are stuck in the past and cannot see the present and future that includes HSCT.

    • Ally grant says:

      That’s where I came back from too in November last year Lindy Aragon. I’ve gone from being not able to walk less than 100 metres without being exhausted , to doing 2.5km on my treadmill every day without even breaking a sweat .. Lol . I’m glad to hear that Josh is doing so well also xxxx

  10. Linda says:

    Wishing everyone best wishes who have gone through stem cell treatment. Thank goodness for the Internet for information. I have SPMS, diagnosed 12 years ago. It’s been a constant battle with neurologists, GP’s, mental health nurses etc. It took me about 3 years to get LDN! The crap you’ve to listen to from so called specialists is unbelievable. I’ve got I don’t bother with any of them!
    It’s good to hear from others who have discovered new treatments. Wishing you every success and a happy, healthy future. Linda (Scotland)

    • Shasha says:

      LDN can be from any doctor…family doctor/Alternative doctor/psychiatrist etc. Calling a compounding pharmacy and asking who gives LDN may help. I had 5 doctors who offered LDN. LDN is awesome help, like a miracle. My heritage is from the Orkney Islands Scotland/England/Ireland on my mom’s side who gives mitochondria to the child. The Orkney Islands Scotland has the highest rate of MS in the world..is far from the equator/low sunlight which causes autoimmune issues to kick in. Celiac is due to low sunlight heritage. LDN helps block opioid receptors that gluten stimulate and helps heal the gut lining so more nutrients absorb….then cells are made right to work right and burn oxygen. My MS is due to low oxygen in my brain. Gluten made antibodies to my thyroid which affects mitochondria/oxygen. To me stem cells may get hurt if the person is not 100% gluten free. Best wishes.

      This is what helps me:
      No gluten/dairy/soy/sugar/GMO and vitamins/good oils, LDN and detoxing help me. Vit D3 5000IU, zinc 50mg if detoxing, 2000mg fish oil , 20000mg evening primrose oil. 2000 mg lecithin, Phosphatidylserine/DMAE, krill oil, CLA, Coenzyme Q10, Rhodiola, Mg citrate 400mg, Vit C, 5000mcg of biotin, Nature’s Plus- Source of life multiple, HCl and enzymes with meals, dairy free probiotic, Vit B12 methylcobalamin shot/spray/under the tongue kind/intrinsic factor kind, MTHF folate, coenyzme Q10, rhodiola, may help brain/body/thyroid/depression/immune system and more. Gluten is wheat/barley/rye..oats may act like gluten with avenin. GMO corn/soy/canola oil may hurt. Amour thyroid maybe needed since gluten may made antibodies to the thyroid. Coenzymated B vitamins far from synthetic kind make make me calm.

      Sunlight (helps the immune system and helps to heal the gut lining),exercise, organic food, good water..not tap water, cooking by scratch pure food….. no food in a box/bag/premade/label/restaurant which may help avoid hidden gluten. Certified gluten free food may have 20ppm of gluten…too much. Nuts not sold in the shell/meat basting/some spices may have hidden gluten and lotion/make up etc. One restaurant cooks special for me…rice/veg/tea/extra mushrooms (no meat since the woks may have MSG/gluten in them).

      EDTA/DMPS IV chelations from an Alternative doctor, 600mg of cilantro, organic sulfur, Now brand- Detox support, Far Infrared Sauna and more may help detox. Hair tests show good minerals and heavy metals. Heavy metals can block thyroid and other chemical reactions in the body/brain.

      LDN may help block hidden gluten/heal the gut lining and help the immune system, but the Celiac diet is still needed. 100% no gluten..no hidden or microscopic gluten may help. Cutting back on gluten or cheating by eating gluten hurts the immune system. It may take 1 1/2 months to heal the gut lining after getting hidden gluten.

      Amour thyroid has some T3 and Calcitonin. Synthroid is only T4..may not convert to T3. Zn/Se/enough iron/strong probiotic may help convert T4 to T3 for thyroid.

      Alternative doctors/chiropractors/acupuncturists and more may help with health/vitamins etc.

      Longer version:
      http://articles.mercola.com/members/Shasha/default.aspx

    • Shasha says:

      LDN can be from any doctor…family doctor/Alternative doctor/psychiatrist etc. Calling a compounding pharmacy and asking who gives LDN may help. I had 5 doctors who offered LDN. LDN is awesome help, like a miracle. My heritage is from the Orkney Islands Scotland/England/Ireland on my mom’s side who gives mitochondria to the child. The Orkney Islands Scotland has the highest rate of MS in the world..is far from the equator/low sunlight which causes autoimmune issues to kick in. Celiac is due to low sunlight heritage. LDN helps block opioid receptors that gluten stimulate and helps heal the gut lining so more nutrients absorb….then cells are made right to work right and burn oxygen. My MS is due to low oxygen in my brain. Gluten made antibodies to my thyroid which affects mitochondria/oxygen. To me stem cells may get hurt if the person doesn’t get Celiac help. Best wishes.

      This is what helps me:
      No gluten/dairy/soy/sugar/GMO and vitamins/good oils, LDN and detoxing help me. Vit D3 5000IU, zinc 50mg if detoxing, 2000mg fish oil , 20000mg evening primrose oil. 2000 mg lecithin, Phosphatidylserine/DMAE, krill oil, CLA, Coenzyme Q10, Rhodiola, Mg citrate 400mg, Vit C, 5000mcg of biotin, Nature’s Plus- Source of life multiple, HCl and enzymes with meals, dairy free probiotic, Vit B12 methylcobalamin shot/spray/under the tongue kind/intrinsic factor kind, MTHF folate, coenyzme Q10, rhodiola, may help brain/body/thyroid/depression/immune system and more. Gluten is wheat/barley/rye..oats may act like gluten with avenin. GMO corn/soy/canola oil may hurt. Amour thyroid maybe needed since gluten may made antibodies to the thyroid. Coenzymated B vitamins far from synthetic kind make make me calm.

      Sunlight (helps the immune system and helps to heal the gut lining),exercise, organic food, good water..not tap water, cooking by scratch pure food….. no food in a box/bag/premade/label/restaurant which may help avoid hidden gluten. Certified gluten free food may have 20ppm of gluten…too much. Nuts not sold in the shell/meat basting/some spices may have hidden gluten and lotion/make up etc. One restaurant cooks special for me…rice/veg/tea/extra mushrooms (no meat since the woks may have MSG/gluten in them).

      EDTA/DMPS IV chelations from an Alternative doctor, 600mg of cilantro, organic sulfur, Now brand- Detox support, Far Infrared Sauna and more may help detox. Hair tests show good minerals and heavy metals. Heavy metals can block thyroid and other chemical reactions in the body/brain.

      LDN may help block hidden gluten/heal the gut lining and help the immune system, but the Celiac diet is still needed. 100% no gluten..no hidden or microscopic gluten may help. Cutting back on gluten or cheating by eating gluten hurts the immune system. It may take 1 1/2 months to heal the gut lining after getting hidden gluten.

      Amour thyroid has some T3 and Calcitonin. Synthroid is only T4..may not convert to T3. Zn/Se/enough iron/strong probiotic may help convert T4 to T3 for thyroid.

      Alternative doctors/chiropractors/acupuncturists and more may help with health/vitamins etc.

      Longer version:
      http://articles.mercola.com/members/Shasha/default.aspx

      • Ally grant says:

        That has all been debunked ! LDSN does not work for everyone & kindly stop with that nonsense ! Nice plug for Marcoola too ?

        • Shasha says:

          LDN may help 99% of MS people. It can work. If you can’t take it at night since it gives so much energy. A person can take it in the day. People may also need to eat no gluten/dairy/soy/sugar/GMO/heated oils…take vitamins/good oils/minerals…probiotic…detox. You can’t assume you can eat any food or junk food and be ok. Rebuilding the cells need nutrients. LDN saved my life.

          My MS friend was slumped over in a wheel chair…took LDN and some of my protocol and healed fast. Within a year she went sky diving/riding on the back of a motor cycle/has two jobs/got her drivers license back/got a new boyfriend. LDN may work awesome. MS drugs don’t fix the root cause which LDN may help. Guys with MS may also have Lyme which may may need to heal from. I recently got Lyme 30 years after getting MS due to Celiac. Herbals/Far Infrared sauna/LDN/AL complex/crytoplepis and more helped my Lyme. Antibiotics hurt me. Antibiotics may hurt the gut lining/lower the immune system and hurt mitochondria. LDN is awesome. I do EDTA/DMPS IV chelations which unclog my blood vessels and remove heavy metals. MS people can heal with natural help. Alternative doctors may help them. Hair test show good minerals/heavy metals. If a person has ridges on their fingers nails they may not be absorbing well in the intestines. Hair tests for good minerals would be low if intestines are not absorbing due to gluten/GMO/antibiotics/Lyme. Detoxing heavy metals may help unblock the thyroid and other chemical reactions. MS people may heal fast and in their lifetime with Celiac help/LDN/vitamins/good oils/probiotic/detoxing. Best wishes.

          • Shasha says:

            LDN is awesome. Some MS people may have Lyme so that is why Chemo may help with the Stem cells. LDN is saving my life and many others.

          • Shasha says:

            LDN is Low dose Naltrexone. It may help 99% of MS people along with trying to eat no gluten/dairy/soy/sugar/GMO/heated oils etc. LDN helps block hidden gluten. LDN is from an Alternative doctor usually. 3-4.5mg of LDN taken before bed or in the morning. It lasts 18 hours. It works better taken before bed..is strong then. LDN is awesome help..like a miracle for me. Dr. Mercola writes health articles…very good source of information and some MS people are at the site. This is what helps me.:No gluten/dairy/soy/sugar/GMO and vitamins/good oils, LDN and detoxing help me. Vit D3 5000IU, zinc 50mg if detoxing, 2000mg fish oil , 20000mg evening primrose oil. 2000 mg lecithin, Phosphatidylserine/DMAE, krill oil, CLA, Coenzyme Q10, Rhodiola, Mg citrate 400mg, Vit C, 5000mcg of biotin, Nature’s Plus- Source of life multiple, HCl and enzymes with meals, dairy free probiotic, Vit B12 methylcobalamin shot/spray/under the tongue kind/intrinsic factor kind, MTHF folate, coenyzme Q10, rhodiola, may help brain/body/thyroid/depression/immune system and more. Gluten is wheat/barley/rye..oats may act like gluten with avenin. GMO corn/soy/canola oil may hurt. Amour thyroid maybe needed since gluten may made antibodies to the thyroid. Coenzymated B vitamins far from synthetic kind make make me calm.

            Sunlight (helps the immune system and helps to heal the gut lining),exercise, organic food, good water..not tap water, cooking by scratch pure food….. no food in a box/bag/premade/label/restaurant which may help avoid hidden gluten. Certified gluten free food may have 20ppm of gluten…too much. Nuts not sold in the shell/meat basting/some spices may have hidden gluten and lotion/make up etc. One restaurant cooks special for me…rice/veg/tea/extra mushrooms (no meat since the woks may have MSG/gluten in them).

            EDTA/DMPS IV chelations from an Alternative doctor, 600mg of cilantro, organic sulfur, Now brand- Detox support, Far Infrared Sauna and more may help detox. Hair tests show good minerals and heavy metals. Heavy metals can block thyroid and other chemical reactions in the body/brain.

            LDN may help block hidden gluten/heal the gut lining and help the immune system, but the Celiac diet is still needed. 100% no gluten..no hidden or microscopic gluten may help. Cutting back on gluten or cheating by eating gluten hurts the immune system. It may take 1 1/2 months to heal the gut lining after getting hidden gluten.

            Amour thyroid has some T3 and Calcitonin. Synthroid is only T4..may not convert to T3. Zn/Se/enough iron/strong probiotic may help convert T4 to T3 for thyroid.

            Alternative doctors/chiropractors/acupuncturists and more may help with health/vitamins etc.

            Longer version:
            http://articles.mercola.com/members/Shasha/default.aspx

          • Wael Breich says:

            I dont mean to put you down, but i wouldn’t trust everything that Mercola guy has to say. Im not saying the info you have is wrong but if his website is your only source then for your own good, double check with something more authentic. The guy’s claims are controversial to say the least and the FDA has issued a couple of warning letters so that he stops his claims! Best of luck to all 🙂

          • Shasha says:

            Mercola is awesome! Conventional medicine tries to hurt awesome people who are competition. Don’t believe what they say. See for yourself the great information and learn. He is not my only source of information. I have read 300 books on health and 17 years of research about MS/human body etc to try to help my MS. Here is an example of an article. http://articles.mercola.com/sites/articles/archive/2016/02/14/vitamin-d-autism.aspx
            Here are other articles:
            http://articles.mercola.com/sites/Newsletter/NewsLetter-Archive.aspx

        • Alisa Woods, PhD says:

          The best sources for medical information are well-controlled studies in peer-reviewed journals. Newsletters and other publications that do not cite well-controlled studies in peer-reviewed medical journals as their primary information sources are suspect. The medical community may not have provided treatments and information that many consider optimal up to this point, however, having a system is place to evaluate medical treatments (controlled studies that are evaluated by multiple trained individuals) is still preferable to relying on the opinion of one individual.

    • Michael Guzzetti says:

      I had stemcells done in florida and nothing has changed,do your resurch first because I have been riped off

      • Shasha says:

        HI, Yes..Stem cell transplants are expensive/maybe dangerous to do and some places may not be as good as others in helping. To me stem cells may help fix the brain/body, but gluten/GMO/dairy/soy/sugar etc may destroy it all over again. Eating any food with a label may have hidden gluten etc.. Eating pure foods/water/sunlight/exercise/LDN/Far Infrared Sauna/EDTA IV chelations/fish oil/Vit C/zinc/Amour thyroid/Mg/HCl and enzymes with meals/probiotic/coenyzme Q10/Vit B12 methylcobalamin with intrinsic factor and more may help.

      • MSedita says:

        Michael, HSCT uses chemotherapy, although a lower dose than used with cancer patients, as part of the treatment.
        First the patient is given medication to promote the growth of stem cells then their stem cells are harvested via apheresis and these are then frozen.
        However, it is the chemotherapy that kills off the bad B and T cells that are causing the problems with your immune system.
        The hematopoietic stem cells that are placed back back into your body have no memory of the disease and are able to become what your body needs to rebuild your broken down immune system. We have a mantra “No chemo, no cure”.
        I am truly sorry if you were mislead by using only stem cells for treatment. Although in some cases it shows improvement of symptoms this way it is very, very often for a brief time frame.

  11. Wael Breich says:

    I am 25yo now. I have RRMS, diagnosed back in 2013. I have some residual facial numbness due to my first flare up in 2013. Im currently also experiencing a weird sensation in my right leg ( as if an electrical current is passing through my leg). I first started treatment with avonex in early 2014 but my last MRI (Sept 2015) revealed at least 5 new lesions in my brain. So my neurologist put me on Gilenya and said it might be more effective. All those MS medications are trial and error..and even if 1 med works, it rarely works for a long time. So should i start considering this HSCT? And if so, does anyone know where’s the best place to do it?

      • Jodi says:

        I put my name in for stem cell treatment in Ottawa and have received no answer. I went to India to get CCSVI treatment and it worked pretty well. I was diagnosed in 2009. With PPMS and uncountable lesions on my. Brain and spinal cord. I want help and don’t know where to go next. I only get to see my neurologist once a year. I live in Canada. Small town called Cranbrook British Columbia but most treatments are in the United States.

        • Shasha says:

          EDTA/DMPS IV chelations may help monthly to unclog blood vessels. No need for angioplasty. Alternative doctors may help with this. Vit K2 with Vit D3 may help keep blood vessels unclogged also. Best wishes.

    • Ally grant says:

      Hi ?
      I have recently undregone HSCT in Puebla Mexico , you sound very much like me . I certainly wouldn’t push it down anybody’s throat , but if you are interested in HSCT then you could perhaps do some rearch on it . For me it has been a godsend. I had HSCT in November 2015 and the change it has made to my life is remarkable . Good Luck xxx

    • Shasha says:

      HI, LDN is about $1 a day. LDN was like a miracle for me. Trying LDN before stem cells may help. Spirulina may help make stem cells and hyperbaric chamber. Raising oxygen in the brain helkps my MS. I think Stem cells may get hurt again by eating gluten which maybe the root cause…Celiac. Tests may not work to diagnose Celiac. Any doctor can give LDN, but Alternative doctors usually give LDN which helps block hidden gluten. Trying to eat gluten free may help in addition since LDN is a low dose. B vitamins may help nerves…coenyzmated ones may help more. Fish oil may help and Vit C. Vit B12 methylcobalamin with intrinsic factor/MTHF may help remyelinate the brain. LDN may cause less lesions in the brain. Lipsomal Vit C and liposomal glutathione may help get rid of free radicals/inflammation. Progesterone may help bones/stress/brain. I don’t do the MS drugs. Natural help heals my intestines so I absorb more nutrients and rebuild my cells daily in my brain/body. Best wishes.

    • Wael Breich says:

      Thanks everyone for your kind comments and advice. I just have a few concerns. Is there anything life threatening about this procedure? And are the results sustained for life or will the immune system relaunch its attacks after some years?

      • Eddie Nash says:

        We are a community of volunteers who have had HSCT done personally or have had a loved one(my wife) treated with HSCT. If you join the group https://www.facebook.com/groups/burthsct/
        you will be able to see testimonials posted of people who as long ago as 14 years have had HSCT done. The trials being done in Chicago(it is also being done in one legitimate location in Mexico and one in Russia and a few others). The Chicago location has treated approximately 600 people for all the 20 some autoimmune conditions in the trial. As with any medical procedure there is risk but it is minimal. They test you very well to make sure you are healthy enough to have HSCT done in Chicago. Join the group Mention my name and they will add you. Then read and the info and especially the blogs. Best wishes!

      • Shasha says:

        http://richardmcohen.com See what he did. There are advances in how they do stem cells now and it may go better, but Richard had problems. Each person is different. I am glad some people are getting help, but LDN is about $1 a day and is awesome help also…helps to block hidden gluten. Best wishes.

  12. Shasha says:

    Richard Cohen did Stem cell treatment and it did not go well. See the link which is his journey. He is still eating gluten. To me I think not fixing the root cause which maybe Celiac/gluten the stem cell help may not last and costs much. Each person is different and maybe some people also changed their diet along with stem cells transplants so they would last longer. Terri Garr was promoting Stem cells, but I don’t know if it helped her. Stem cell procedures may get better in time and work better. I know what I do is good enough to help my MS. I would like to fix my mitochondria DNA. To me natural help works well. Using your own stem cells is better than from another person which would need antirejection drugs. Fat cells can be used for stem cells now. There are advances in Science. I just know what I am doing is fine and I am well. American food hurts people. I eat the Asian/Celiac diet which helps my brain/body. MS people may heal fast with Alternative medicine/Celiac diet/LDN/vitamins/good oils/minerals/detoxing etc. Best wishes.

    http://richardmcohen.com/category/journeyman/

    • MSedita says:

      Sasha, Richard Cohen did not do HSCT which is very different than just having stem cells put in.
      The science behind it supports the use of chemotherapy, a lower dose than used with cancer patients, to kill of the B and T cells that are fully responsible for the immune systems issues. This is crucial! Without the chemotherapy your body still has the bad B and T cells causing havoc in your immune system and hence your whole body.

  13. Eddie Nash says:

    Richard Cohen got it wrong. Dr Richard K. Burt has been doing research and testing for 30 years now. He has refined this down to where when you have tried all the drugs and potions and they are not working and you want a dose of REALITY! Honestly and truly ask the 600+ from Chicago. Ask the same number from Dr Fedorenko in Moscow. Want to ask the 1,000 plus who have been treated and CURED(my words) placed in full remission by Dr. Guillermo Ruiz that is classically trained in internal medicine and hematology that further went on to complete his post-doctoral research fellow program in Hematology at the Department of Hematology of the Mayo Clinic in Rochester, Minnesota, USA. And now runs Clinica Ruiz medical center. https://www.facebook.com/groups/mexicohsct/
    As you can tell I am a enthusiast who had his wife returned to him in great health from the CIDP invalid she once was.
    AND I MAKE NO MONEY OFF OF SELLING YOU A THING!

    • Shasha says:

      I am glad transplant people are doing well. I just think it has not fixed the mitochondria or Celiac. If a person has Lyme and gets Chemo may hurt the mitochondria more, but may kill the Lyme. Some MS people may also have Lyme. Raising oxygen in my brain helps my MS. My sister saved her kids umblical cords, but they can use fat now. Richard has stem cells taken out of this sterum and grown and put back into him. He did not do well. He is not gluten free and…still eats pizza etc. Changing my diet heals my intestines so more minerals/good oils/nutrients absorb and it rebuilds my cells. I would think the stem cells would migrate to locations that need them and help heal them, but if a person eats gluten to me it may undo the good eventually. I was born Celiac and after having two babies in a row that drained all the vitamins/good oils out of me…and thyroid went down due to gluten…then the MS started due to low oxygen in my brain. I survived until age 30 with undiagnosed Celiac, but then it kicked in. Stem cells may help, but how long until the same thing that hurt the first time kicks in. I have Herpes 4..Mono, Herpes 6 and 7 Zyto scan says due to my immune system being low due to Celiac/gluten. Celiac is due to low sunlight heritage. Infections of bacteria like Lyme or viruses may lower the immune system. Clearing them out and heavy metals/chemicals may help detox people. I also need EDTA/DMPS IV chelations to clog blood vessels due to Ca building up. Vit K2 may help. I can’t eat saturate/monounsaturated fat…clogs my blood vessels. Stem cells may turn back the clock, but if the person is exposed to the same things to me, they will get worse eventually. Did the stem cells heal the gut lining/thyroid/adrenals/mitochondria? Did people change their diet also? I saw my friend with LDN alone heal and be like “normal again”, but needs to watch her diet. American food hurts the brain/body. I am glad you are helping others find out about this. I just think the same damage may happen again if the person doesn’t change their diet/life style etc. Thanks for the information. Happiness….

        • Shasha says:

          What I do rebuilds my cells..is not a bandaide. No gluten/raising Vit D3 stops the autoimmune reaction. Stem cells may rebuild also, but is expensive and may be destroyed if people don’t change their diet/life style etc. I need to do many things to help my health like LDN etc., but it works.

  14. Eddie Nash says:

    My only hope and prayer is that HSCT is not killed and put away in the drawers of a researchers filing cabinets! After seeing hundreds and hundreds of persons experiencing amazing LONG TERM results I am enthusiastic as you can see. I am not working for anyone or being paid by anyone to try to get the word out. Some seem to be selling a product. The letters of gratitude from people I have shared my wifes testimony or her deliverance from CIDP made me want to let others know.
    Honestly Doctor Alisa Woods, PhD if you wanted an extremely rewarding future you might want to check into what HSCT is doing for people. It is not a new procedure as it has been done with a variance of protocol for Leukemia and some other cancers for years. Be on the cutting edge and start helping people in an awe inspiring way. If big pharma and entities that gain by keeping people sick do not kill off HSCT there is a bright future in the medical field WITHOUT DRUGS. Info@stemcell-immunotherapy.com

    • Alisa Woods, PhD says:

      Thank you for your enthusiasm Eddie, and for the PubMed indexed sources supporting HSCT. These are very useful. It is also wonderful to hear about your wife’s success. I am writing another article on individual patient experience with HSCT that will be published shortly. Yes, individual experiences are also important to note. In medicine they call them case studies. Peer-reviewed large scale trials are considered the standard for biomedical research and clearly many such published trials ALSO exist on HSCT. Hopefully widespread validation in the USA and effective treatment will follow.

      • Eddie Nash says:

        I would hope young medical professionals such as yourself who are not locked into the old school of “push a pill and see me in the morning” approach. There is so very much in the works from genetics to using old treatments in new ways it is very exciting. Dr Richard K Burt does grant interviews and come to medical seminars and give educational talks. Maybe you could attend one or invite him to one in your area! Thank you for understanding “the old man with a fire in his heart for healing people!”

        • Alisa Woods, PhD says:

          Thanks for the suggestions and information again Eddie. Concern for an inflexible medical model is understandable. PhDs are trained in research methodology and can’t legally prescribe BTW.

  15. Joseph L says:

    So do you need to have progressive MS to have HSCT? I was just diagnosed a year ago, supposedly relapsing. I have been on Aubagio for this entire time, makes me sick to my stomach and I’ve gotten a few more lesions during its use. I feel very tired and my eyes feel like they’re being pushed in and can’t focus. My legs feel like I have about 5lbs of sand weighted to them. I have a 4 yr old, an HMO, and little funds…is HSCT a good idea??

    • MSedita says:

      Joseph, I am sorry for your troubles. My husband has/had suffered for years and we fought long and hard to get HSCT. Unfortunately HSCT is in clinical trials and all in all it took us 5 long years to get HSCT. In that time frame his body took a beating from his disease and the problem is that sometimes once the damage is done it cannot always be undone. Please seek out HSCT as soon as possible. The sooner the better.
      It helped my husband immensely. The only sad thing was when our attending physician asked ” why didn’t the first place do HSCT?”. Because here in the US we are still in clinical trials and it is a darn shame. As so many who would benefit from it here in the US have had to seek it utside of the US. I, for one, am thrilled we were accepted into the program in Russia. We had excellent treatment with an excellent and highly trained doctor (he comes to MD Anderson once a year) who leads a wonderful staff.
      My husband was in giant way to being wheelchair bound and now he walks without a cane and lives a much better quality of life.

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