Pulmonary Fibrosis News Forums Forums Welcome Lounge Has anyone tried Stem Cell therapy?

  • Ben Robinson

    Member
    June 17, 2021 at 3:55 pm

    Not approved by FDA and only available at private companies of suspect success rate lets say.  There is also some danger involved in the treatments injected.  China has a good trial going where they inserted by bronchoscopy instead of systemic injection.  But I would stay out of Wuhan, LoL.  It all sounded good to me too and I looked deeply into it, but it was a no go.  So I am resigned to the unpleasant transplant route spinning the six shooter with three bullets and praying for luck.  Wish me luck.

  • Pete Besio

    Member
    June 17, 2021 at 8:28 pm

    @lnour
    I too am very interested in stem cell therapy as an IPF cure. When I was participating in the Galapagos GLPG1690 trial, the clinic that I was working with had someone drop out of the trial because they were pursuing stem cell treatment. The clinic echoed the thoughts that Ben posted.

    There is a clinical trial currently underway on stem cell treatment, being conducted in Chapel Hill NC in the US. I contacted them to see if I could participate, but their advice was it is difficult to participate in this trial if you are not local (I am in Florida). Info on the trial can be found here:
    https://www.clinicaltrials.gov/ct2/show/NCT04262167?id=NCT03865927+OR+NCT04598919+OR+NCT04262167+OR+NCT04552899+OR+NCT02019641&draw=2&rank=3&load=cart

    Best Regards,
    Pete Besio

    • DJ

      Member
      May 31, 2022 at 9:44 pm

      They will probably never approve this in America.  Too many politics, and healthy people don’t make pharma rich.  And if you think pharma isn’t in bed with the government…

       

      Watch the many videos on youtube of people who have had stem cell therapy.  Then decide for yourself.  Just remember, in Mexico, they are curing cancers that in American they WON’T.  Also, google mel gibson on joe rogan talking about his dad’s stem cell treatment.

      Get informed then judge for yourself.  There is a big push to have this all go away.  Wonder why.

  • Jerry Standley

    Member
    June 17, 2021 at 10:20 pm

    Last November 2020, I began a STEM CELL Regimine of Donated Umbilical Cord Stem Cells,
    every 3 months. Seven months into the program, I now have New Hair, New Skin and New
    Muscles. New Muscles is encouraging since the HEART is a Muscle. I am waiting for my
    Pulmonary Fibrosis to get better.
    People under the age of 30 have …. Every Cell in their Body is Replaced on a regular basis. Over the age of 30, this process slows down due to Less Stem Cells being produced by the body. Every year after 30, gets worse. Eighty year old people may have only 5% as many Stem Cells of 30 year olds. Each organ in the body is on a different schedule for rejuvenation. So, Heart & Lungs may take ….. One Year or More.
    Since Stem Cells are attracted to Inflamation (heat) to do their work, taking Supplements to Reduce Inflamation may require more time for Rejuvenation.
    Stem Cell Injections are …. Whole Body Therapy, and have their own priorities. Your may have to WAIT for your Special Interests to be addressed.
    Hope THIS is Encouraging. God Bless

    • Deleted User

      Deleted User
      June 18, 2021 at 1:22 am

      When will you have your next lung function tests? Im curious to see if the are any signs the stem cells have helped.
      Can you elaborate on what your Stem Cell regiment is? Do you go to a clinic? Is it injected?

      • Jerry Standley

        Member
        June 18, 2021 at 9:07 am

        My Pulmonary Doctors at the V A Hospital near my home have given me “The Death
        Sentense”. Pulmonary Fibrosis is a terminal disease and Supplemental Oxygen is the only thing the V A has to offer. They recommend that I sign up for Palative Care and Hospice Care. THEY WILL TRY TO MAKE ME COMFORTABLE.

        Therefore, I have chosen to Take Charge of My Own Body.

        I believe that Stem Cells are God’s Fountain of Youth. They work really well until you are 30 years of age, then they begin to deminish. By the time you are 80 years old, you may have only 5% of the Stem Cells of a 30 year old.
        So, people of Retirement Age may want to consider Stem Cell SUPPLEMENTATION to help keep their body going. They should be added on to a Nutrient Dense Diet, Exercise,
        Sleep, Stress Free Lifestyle, etc.

        My Stem Cell Injections come from Birthing Mothers that Donate their Umbilical Cords. For THIS, I am Truly Thankful.

        God Bless

      • Jerry Standley

        Member
        June 19, 2021 at 5:23 pm

        Lnor, My Lung Function Test is T H I S ……. I can take only 6 steps before collapsing. Of course, Doctors would want a Digital Print-out of this Test.

        My Stem Cell Therapy is as Simple as This. The Therapist comes to My Home and administers an Injection in the bend of my Arm. It is Very Un-eventful.

        Umbilical Cord Stem Cells are Donated by Birthing Mothers (thank God). They begin to Multiply every-day for 12 weeks and then begin to taper off. That is why it is recommended to Get and Injection every 90 days until you have a Body of a 30 Year Old person again.

        The main thing to remember is the Medical Mafia will NOT approve any-thing that Really Work as they are in the Business of Throwing Things at your Symtoms for as long as you are alive.

      • Bruce Hawn

        Member
        July 20, 2021 at 4:32 pm

        Jerry, do you have contact information you can share to contact the group that is giving you the umbilical stem cell injections?

      • DJ

        Member
        May 31, 2022 at 11:30 am

        Meanwhile there are SO MANY drugs that have shown promise in animal trials.  But they are not moving forward with humans.  SAD.

      • DJ

        Member
        November 23, 2022 at 9:57 pm

        Hi. Where do you live? I thought they only did this kind of treatment in a few countries.

        Thank you.

      • Jerry Standley

        Member
        July 23, 2021 at 8:12 am

        I began a Stem Cell Regimine, last November of 2020. Motivation was, I sensed that
        my Lung Function was deteriorating rapidly, and that I would Never-See-Christmas.

        So, a local clinic in Houston offered to Come To My House and Inject == 2cc’s of Umbilical Cord Stem Cells that were Donated by Birthing Mothers. That First
        Injection …… Saved-my-Life, as you can see.

        The Injected Stem Cells begin to Multiply 24 hours a day for 12 weeks. At that time their volume begins to deminish. Therefore, it is recommended that the
        patient get Booster Injections …. Every Three Months. My Fourth Injection is
        Scheduled on August 15.2021,

        Since Stem Cell Injections are ….. Whole Body Therapy, you do not know where they
        will go to Do-their-business. They are attracted to Inflamation. They may be
        solving a problem that you do NOT know about.

        Please Grasp This ….. Under the age of 30, every cell in your body get replaced
        on a Regular Bases because of the Large Abundance of Stem Cells. After the age
        of 30, your Body’s Stem Cell Production begins to deminish. Therefore, your body
        begins to Deteriorate. Each Organ in Your Body is on a Different Schedule for
        Cell Replacement. Heart and Lungs could take a Year or More … If there is an
        abundance of Stem Cells.

        My belief is that Umbilical Cord Stem Cells have finally got around to Rejuvenating
        My Lungs. An 80 year old may have only 5% of Stem Cells of a 30 year old.

        So, my plan is to Continue With Stem Cell Injections for the Duration of My Life.

        I hope this information is Enlightening.
        God Bless
        Jerry

      • DJ

        Member
        May 31, 2022 at 9:45 pm

        Can you tell us where you went to have this done?

    • Jerry Barnum

      Member
      June 30, 2021 at 11:48 am

      Great, hopeful information, Jerry. How would I contact your medical team?

    • Steve Dragoo

      Member
      July 1, 2021 at 8:07 pm

      @jerrystandley

      Hey Jerry,

      I am a vet using VA too.  So I am highly interested in where you got into stem cell therapy.  I am in the Philippines but might be able to figure it out.  Any pros and cons you are willing to share?

      Regards VA disability claims there are a couple of YT channels that may help you.  I’ll see if I can find them if you want.

      Stay well – Steve

  • william-e-shotts

    Member
    June 19, 2021 at 11:17 am

    I am very interested in Jerry’s post. I am also a veteran. I receive some care through the VA. However, for my IPF I receive care from National Jewish in Denver Colorado. My VA physicians were not as callous as Jerry’s but they were very supportive in my seeking care elsewhere.  Since I am VA documented agent orange exposed I have pressed the VA for a link between agent orange and IPF. My physicians have been very vague in their answers to my questions. They all seem to say the same thing “there is no definitive link between IPF and agent orange“. I commend Jerry on taking control of his treatment. While we all realize there is no current cure for this insidious disease there is always hope, prayer, and faith in God.

    God bless you Jerry in your journey.

    • Jerry Standley

      Member
      June 19, 2021 at 5:11 pm

      Thank You ….. William Shotts. I applied for Military Disability two different times,
      believing that as an Air Force Ground Mechanic and Inhaling Jet and Gasoline fumes started
      my Scaring of the Lungs.

      Being Denied both times, my sarcastic view is that when the Denial People learned that I was in the AIR FORCE, they said …. You Didn’t Get It From Us.

      If makes me feel better, saying that.

      God Bless

      • Manzurul Khan

        Member
        July 23, 2021 at 8:49 am

        I live in the Houston area. Can you share the name of the Clinic and contact information? I don’t have any idea if my insurance will pay for the treatment. How much does it cost monthly? Does VA cover your expenses?
        Thanks.

  • Carlo De Pellegrin

    Member
    June 22, 2021 at 2:14 pm

    Lnour, Ben, Pete, Jerry and William,

    Thank you very much for this information. I live in Canada, in a suburb of Toronto. Is there anyone in Canada that will undertake this procedure, if any of you happen to live here and does anyone of you know the cost of the procedure(s)?

    God bless you all, Carlo

  • Mary Eileen

    Member
    June 24, 2021 at 9:26 pm

    Like many readers, I am interested in stem cell therapy at a reasonable cost.  I did not know that patients were receiving this in the US.  I have only found that it can be obtained out of this country.  I live near Buffalo N.Y. and would appreciate any  information on its availability and effectiveness.

    Mary Eileen

  • John Weitner

    Member
    June 29, 2021 at 9:54 am

    Jerry,

    Thanks for sharing your experience.. Based on this I definately want to do it

    where do you live?

  • Jofac O'Handlin

    Member
    July 4, 2021 at 2:16 pm

    Hi All, Shortly after I was diagnosed in August 2013, I read about a programme of stem cell treatment by Miami Univetsity Hospital.

    As a newly diagnosed relatively fit individual I was keen to participate. Being a British Islander (not strictly U.K.) there would be complications. In February 2014 I did investigate the posibilities but the beaurocracy seemed too difficult. I did continue  at intervals to enquire. I seems that they did get Federal (?) approval for continued research but never heard anything further.

    I also found a reference to some earlier Greek research but that was certainly terminated due to unsatisfactory results.

    We live in hope. For me it’d better be quick!

    Joe

  • John Weitner

    Member
    July 7, 2021 at 2:00 pm

    I have not had any success finding out where in Canada or the US, this type of therapy is available.

     

    it is available in Costa Rica and Mexico and very expensive which doesnt surprise me , but I would prefer someplace in Canada or the US.

    • Deleted User

      Deleted User
      July 7, 2021 at 3:58 pm

      My research found Panama to have the most credible clinic, there is also one in Colombia which seems to be legitimate.
      $20000 is the approximate cost

      • DJ

        Member
        May 31, 2022 at 9:49 pm

        I think also at some lung institute in AZ.

  • morton campbell

    Member
    July 19, 2021 at 10:40 pm

    UNC Chapel Hill, NC they are doing trials for IPF using stem cell therapy. i think enrollmeny is still open. DR Lobo is the head guy.

  • Ben Robinson

    Member
    July 20, 2021 at 2:32 pm

    Dr Lobo is my Doctor and I went to see him for that reason. He has had to abandon that program due to bonding amd money. He also made it clear that his systemic stem cell injection is not for everyone and has dangers as I described to some level above   He is however a very good pulmonologist but it was a four hour drive and my PH didn’t like that trip. They are nice friendly smart people down there. The City of Medicine it says as you drive in.  Also keep in mind that with an injection of stem cells they scatter all over your body. A large percentage end up in the liver. Who knows what that does. The hope was that the like kind lung cells by doctor lobo might migrate to the lungs by attraction. Who knows. He will be the first to tell you that it needs a clinical trial. Be wary of all studies using mice. They are different than people. The Lung Institute uses bone marrow I believe as a source for their stem cells which a also systemically injected.  Johns Hopkins attacked them for being crooks they say. Some could say that about Hopkins.  LoL. Good luck I hope this helps your decisions. Ben.

    • Steve Dragoo

      Member
      July 20, 2021 at 8:28 pm

      @6yearvet

      Hey Ben,

      That was some straight forward insight.  Of course, we all would like stem cell therapy to work but it will not help if the side effects overwhelm the body’s already weakened state.

      There are several other trials going on in various stages let’s just hope they are successful.

      Stay well – Steve

      • Deleted User

        Deleted User
        July 21, 2021 at 12:41 am

        Hey Steve, regarding Stem cell treatment, im pretty sure it’s not available in the US outside of clinical trials. The only options available are a couple of clinics in panama & S. America and one in Germany, these are the credible ones at least. The procedure is pretty safe and it’s the only thing that has shown in clinical trials to stop and in some cases improve FVC deterioration, but these are just clinical trial results. When the stem cells are injected in your body, the first place they migrate to is your lungs and heart, not the liver and they have shown no lasting side effects, let alone dangerous ones. The only obsticles are you being approved by the clinics and the expensive costs. So if you can afford it and you are able to get approved by one of the legit clinics then it’s a no brainer to try it imo

      • Steve Dragoo

        Member
        July 21, 2021 at 1:56 am

        @lnour

        Hi Lnour,

        By other trials, I meant other potential useful meds.  But have you done stem cell or know anyone who has?  If so bring them to the forum they would make a great study.

        Thanks,

        Steve

      • DJ

        Member
        May 31, 2022 at 9:50 pm

        The US doctors are being brainwashed into believing this is harmful.  They don’t want to cure people in the US.  I would imagine Canada is just as bad if not worse.  Do your own research.

  • Jofac O'Handlin

    Member
    July 23, 2021 at 10:30 am

    Hello,

    As I have previously posted the Miami University Hospital started stem cell research back in 2013 /14. The results did not seem to be released.  I did try to keep in touch but got no response.

    I see the Kings College group in London is showing positive results with a tiny trial relating to covid induced lung fibrosis. This apparently using the patient’s own red blood cells etc. This may be paralleling research going on in US hospitals.

    Intend to write to Kings inquiring about the possible relevance to our IPF disease. I will post any valid response.

    Me? At 79 heading for 80 ..whoopee, but going gently downhill. My friend who is 85 is slightly ahead of me in his limitations, and this is supposed to be a rare disease! Both of us are non-smokers. All this against the background of THE virus!

    Regards,  Joe

    • Jeff Taylor-Jackson

      Member
      July 27, 2021 at 9:53 am

      Hi Joe,

      You are right, there is a “Very small” study being carried out at Kings, they are looking into using the patients own white blood cells to treat lung scarring from covid infection.

      https://www.bbc.co.uk/news/av/uk-57837432

      You may not be able to see this in the US, as it’s the BBC website.

      I have mentioned this at my APF group and many of the IPF researchers are excited about it.

      It is in it’s infancy and a very small study. what needs to happen is a larger group of participants. With the amount of people affected by Covid, then there may be enough to create a decent study.

      To me, lung scarring is lung scarring caused by Covid or by the Idiopathic (That we are all confused about where we got it from). so if it works great!

      This will be a few years before any results are known.

      Fingers crossed it shows positive results for us all – wherever we may live in the world!

      Kind regards

      Jeff

      • DJ

        Member
        May 31, 2022 at 9:52 pm

        Have you looked into the Lung Institute in Arizona?  Can’t remember which city.

  • Ben Robinson

    Member
    July 27, 2021 at 6:14 pm

    The Place is called the Lung Health Institute on line and are probably the oldest private cellular treatment around that Hopkins doctor told me they were after them.  Dr. Lobo really did impart the dangers to me as I described.  I wish you all the best of luck and hope that you do find something somewhere with the stem cells, but I do think Lnour is talking out of her rear end on this.

    • Deleted User

      Deleted User
      July 27, 2021 at 10:58 pm

      Thanks Ben for the “kind” words, but when you come on a forum like this and give out information then you should at least be accurate with it and know what you are talking about, your treatment has nothing to do with Stem Cell therapy, you are getting platelet-rich plasma-platelet concentrate (PRP-PC) which is very different from Stem Cell therapy which is the headline for this forum. So no, I’m not talking from my rear end, i have spent hours upon hours trying to find something that could help my father with this disease and have read every study available on stem cell therapy for IPF, so i know quite a bit on the subject and trying to share what i can and hopefully learn from others here about their knowledge on Stem cells, not platelet-rich plasma. I suggest you start a forum for your treatment so those who wish can read it and decide if it’s for them rather than write about it in the wrong forum and confuse people and get upset when your information is questioned.

      • DJ

        Member
        May 31, 2022 at 11:22 am

        Hello.  I too have done some research on this and would love to find someone who has tried it.  There are so many trials with rats and mice that have shown success, but why no trials on humans?  I know there are some, but not many at all.

      • DJ

        Member
        November 23, 2022 at 9:56 pm

        He is bringing something to the table. If he hadn’t talked about PRP I wouldn’t have known about it. And from what I understand, it can be a very beneficial lung therapy. BTW, stem cell and PRP are not THAT different. There are different kinds of stem cell therapies, they are different, but also similar. The end result is supposed to be the same. They scavenge out inflammation. I realize there are different threads for different things, but don’t tell someone to stop bringing information forward. I am also on another site out of the UK where people get so side-tracked they post a bunch of minutia of their day to day lives. THAT, I could do without.

  • Ben Robinson

    Member
    July 28, 2021 at 10:55 am

    Lnour

    Dr Lobo is a nationally reknowned doctor whom I had appointments and discussions with regarding stem cell therapy and is the credible source of my information.  He was brought up by another participant in this forum to which I responded   It seemed quite pertinent to the subject

    The lung institute at least used to do stem cell therapy from bone marrow amd was well known when I called there a couple years ago maybe they still do  ? I don’t care because I am not doing it with them that’s for sure  I don’t know if any other private firms

    You should do better research because systemic injection of stem cells comes with untested risks per Dr Lobo.  You will kill somebody with your sunshine blowing blabber

    Again best wishes to all in there pursuit of stem cell therapy and hopes that the new big pocket backed clinical trials bear fruit

     

     

     

    • Christie Patient

      Moderator
      July 29, 2021 at 3:40 pm

      @6yearvet @lnour It is a forum policy to treat all forum members with respect. We can have disagreements and discourse without being unkind to one another. If you wish to continue this conversation, keep that in mind.

      And another note, everyone can and should be doing their own research about treatments and trials, and should take everything in the forum, especially regarding non-traditional therapies, as subjective experiences.

      • DJ

        Member
        November 23, 2022 at 9:56 pm

        I agree 100% with you! I’m glad he brought this to this conversation.

    • DJ

      Member
      May 31, 2022 at 11:23 am

      The stem cell therapy for lung fibrosis it done through blood, not marrow.  Even if it works, I’m sure the government agencies will kabash it for whatever reason.  Too many politics in the way of everything today.

    • DJ

      Member
      November 23, 2022 at 9:55 pm

      Ben, thank you for bringing this to the table. Some people live life with blinders on…and are happy that way. I just don’t understand why they have to be nasty just because they don’t agree with someone else’s views…especially when they don’t even know what it’s all about. Please don’t stop sharing any ideas, or information you may find.

  • John Weitner

    Member
    June 1, 2022 at 2:05 pm

    Due to this thread I decided to have stem cell therapy done – which I did last December at a clinic in Colombia.

    I was told that it would take 4 to 6 months to see any results. They stated that the improvement would be less inflammation in my lungs. They never made any claims that the scarring would get reduced.

    I can state that my inflammation has gone down – noticeably so – I cough less and have to clear less mucus than before the treatment. However there hasnt been any improvement in my breathing or a lower need for oxygen – my SPO drops below 90 with ANY activity including slow walking.  I feel my breathing has gotten slightly worse over these 6 months.

    I’m glad I did it simply because it was worth trying. The staff at the clinic were wonderful.

    Hard to say if it was worth the expense – region of $20K – if reduced inflammation would slow down the progression – then it’s worth doing – otherwise no.

    • Steve Dragoo

      Member
      June 2, 2022 at 2:48 am

      @johnweitner

      Hey John, I decided against stem cell in part because of this thread (and others I have talked to).  Instead, I have been using serrapeptase 4.5 years and it knocked out most mucous in a few days and continues to work very well for me. Plus a handful 0f other supplements.

      Stay well – Steve

      • DJ

        Member
        November 23, 2022 at 9:56 pm

        Can you say what the other supplements are that you take?

  • Millie

    Member
    November 12, 2022 at 8:03 pm

    I live in Myrtle Beach, South Carolina, and there is a clinic and doctor here who does stem cell therapy. My neighbor is getting it soon but not for lungs. Another neighbor had it, but not for lungs, and has seen great improvement. She had been confined to a wheelchair and now walks and does many activities. The cost is high—-$20,000.

  • Curt Strickland

    Member
    November 25, 2022 at 7:20 am

    I had stem cell therapy and I believe it was. huge factor in my lung transplant. I received it in the fall of 2019 and after six weeks, I was feeling a lot better. (I had IPF) In January of 2020, my wife probably contacted Covid, not knowing at that time it was covid, and passed it on to me. I deteriorated rapidly but was able to receive new lungs shortly thereafter–it probably saved my life at that time. My stem cell consisted of taking cells from my stomach and injected them through an IV. it was done in Tampa, Florida. i am extremely heathy now.

  • Richard L Shelby

    Member
    July 22, 2021 at 5:13 pm

    Please ignore my response as I discovered the quote was not from the correct web site. I tried to edit or delete my message but the system would not accept the edit. Sorry for wasting space and time.

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