June 17, 2021 at 8:33 am #28900AnonymousInactive
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:
June 17, 2021 at 3:55 pm #28912
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.
June 17, 2021 at 8:28 pm #28915Pete BesioParticipant
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:
June 17, 2021 at 10:20 pm #28924
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
June 18, 2021 at 1:22 am #28926AnonymousInactive
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?
June 18, 2021 at 9:07 am #28937
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.
June 19, 2021 at 5:23 pm #28953
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.
July 20, 2021 at 4:32 pm #29267Bruce HawnParticipant
Jerry, do you have contact information you can share to contact the group that is giving you the umbilical stem cell injections?
July 23, 2021 at 8:12 am #29307
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.
June 30, 2021 at 11:48 am #29068Jerry BarnumParticipant
Great, hopeful information, Jerry. How would I contact your medical team?
July 1, 2021 at 8:07 pm #29088
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
June 19, 2021 at 11:17 am #28948William E. ShottsParticipant
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.
June 19, 2021 at 5:11 pm #28952
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.
June 22, 2021 at 2:14 pm #28970Carlo De PellegrinParticipant
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
June 24, 2021 at 9:26 pm #29005Mary EileenParticipant
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.
June 29, 2021 at 9:54 am #29038John WeitnerParticipant
Thanks for sharing your experience.. Based on this I definately want to do it
where do you live?
July 4, 2021 at 2:16 pm #29103Jofac O’HandlinParticipant
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!
July 7, 2021 at 2:00 pm #29126John WeitnerParticipant
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.
July 7, 2021 at 3:58 pm #29127AnonymousInactive
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
July 19, 2021 at 10:40 pm #29263morton campbellParticipant
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.
July 20, 2021 at 2:32 pm #29264
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.
July 20, 2021 at 8:28 pm #29268
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
July 21, 2021 at 12:41 am #29272AnonymousInactive
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
July 21, 2021 at 1:56 am #29273
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.
July 23, 2021 at 10:30 am #29305Jofac O’HandlinParticipant
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!
July 27, 2021 at 9:53 am #29322Jeff Taylor-JacksonParticipant
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.
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!
July 27, 2021 at 6:14 pm #29336
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.
July 27, 2021 at 10:58 pm #29345AnonymousInactive
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.
July 28, 2021 at 10:55 am #29351
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
July 29, 2021 at 3:40 pm #29372ChristieModerator
@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.
July 22, 2021 at 5:13 pm #29301Richard L ShelbyParticipant
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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