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    • #28900
      Lnour
      Participant

      I have been researching for a while for alternative treatments for IPF and i came across a few good studies that show promising results for mesenchymal stem cells in IPF patients. This therapy seems to only be available at private clinics and is expensive, it has not been approved by the FDA or the European equivalent for IPF, but the data looks really interesting so im wondering if anyone has tried this yet?
      Below links to some information:

      https://stemcellsjournals.onlinelibrary.wiley.com/doi/full/10.1002/sctm.19-0037
      https://www.thelancet.com/journals/lanres/article/PIIS2213-2600(17)30180-7/fulltext

    • #28912
      Ben Robinson
      Participant

      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.

    • #28915
      Pete Besio
      Participant

      @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

    • #28924
      Jerry Standley
      Participant

      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

      • #28926
        Lnour
        Participant

        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?

        • This reply was modified 1 month, 1 week ago by Lnour.
        • #28937
          Jerry Standley
          Participant

          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

        • #28953
          Jerry Standley
          Participant

          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.

        • #29267
          Bruce Hawn
          Participant

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

        • #29307
          Jerry Standley
          Participant

          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

      • #29068
        Jerry Barnum
        Participant

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

      • #29088
        Steve Dragoo
        Participant

        @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

    • #28948
      William E. Shotts
      Participant

      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.

      • #28952
        Jerry Standley
        Participant

        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

        • #29308
          Manzurul Khan
          Participant

          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.

    • #28970
      Carlo De Pellegrin
      Participant

      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

    • #29005
      Mary Eileen
      Participant

      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

    • #29038
      John Weitner
      Participant

      Jerry,

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

      where do you live?

    • #29103
      Jofac O’Handlin
      Participant

      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

    • #29126
      John Weitner
      Participant

      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.

      • #29127
        Lnour
        Participant

        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

    • #29263
      morton campbell
      Participant

      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.

    • #29264
      Ben Robinson
      Participant

      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.

      • #29268
        Steve Dragoo
        Participant

        @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

        • #29272
          Lnour
          Participant

          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

        • #29273
          Steve Dragoo
          Participant

          @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

    • #29305
      Jofac O’Handlin
      Participant

      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

    • #29301
      Richard L Shelby
      Participant

      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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