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Thread: Copd

  1. #1

    Default Copd

    I'm seriously considering stem cell treatment for my COPD and would like to talk to people who have had this done.

  2. #2

    Default terryl

    I can't speak for the group and this is my first posting but, I noticed you had 95 views and not a single response.

    I have had two stem cell treatments and unfortunately for me, and my bank account, they did nothing. I felt improvement for the first 3 weeks after, and then back to breathlessness, weight loss, and unable to do about anything but watchTV.

    I do believe we are all glued to this site hoping that someday, somewhere, stem cells will renew our lungs and we can get on with life as we once knew it. When that happens, I will be in line.

    I have tried everything I read here, and I think it has prolonged my life. Examples are serapeptase, hydrogen peroxide, scalers silver, GHK-cu, glutethione, iodine, baking soda, and about a dozen pills listed here from time to time.

    I also follow clinical trials and have been rejected from all because of the condition of my lungs. I think they want healthy volunteers??

    Hopefully, with enough of us here and looking and trying unconventional treatments, someone will come up with something.

    Good luck

  3. #3
    Join Date
    May 2007
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    12,909
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    Default

    I am very sorry for missing this post. Thank you terryl for your input. In the Spotlight section posted just today is the May Ask the Doctor hosted by Dr. Lee. He does address the question as to why some respond better than others. In the Ask the Doctor section you can also look for Dr. Grossman's last Ask the Doctor and he addresses the question.

    For me, I have had some excellent treatments and also some horrible treatments, one in particular that I call the treatment from hell. I do not know of any treatment that has proven to actually regenerate lung tissue, however, stem cells do reduce inflammation and for some that is precisely why they feel better. Once a person feels better it results in more activity, a more positive attitude and the ability to not dwell on one's disease. Such quality of life improvements are well worth it in my opinion. My treatments have also stopped the progression of the disease which is significant in my opinion.

    jwayne3 - I'm sorry that more members aren't responsive, but many prefer to lurk in the background and others are afraid to post for fear that they will post something in the wrong place or misspell a word. There is not much I can do about it, but continue to urge people to participate and not worry about those things. The open forum is how others learn through sharing questions and experiences. I hope you will let us know if you decide to have treatment.
    First treatment in 2007. Pioneering ever since.

    Barbara

  4. #4

    Default

    My experience is identical to terryL ( I am not on oxygen yet but feel it is coming soon) except I have had one stem cell treatment but it included Platelet Rich Plasma ( PRP) by intravenous and also Nebulized ( PRP) all in one sitting. It has been 11 weeks since my treatment and for 3 to 4 weeks I felt slightly better ( less shortness of breath) and I ride bicycle 10 miles most days but at a slow 10 mph speed.

    I gained 18% on my original diagnoses of severe emphysema ( stage 3) 29% or 1.01 ltr to 34% and 1.19 ltr using mild Symbicort 80/4.5% and exercise. Quitting smoking probably helped a bunch even though I felt better and had more energy when I smoked.

    My exercising and breathing has been getting slightly worse in the last 4 weeks, about 11 weeks after stem cell treatment, so any gain has been short lived so far ( They say I should gradually start feeling better after 2 months to 6 months). Hey maybe tomorrow I will
    wake up and feel like a track star or at least not be very short of breath when taking a shower or take garbage out.

    Only going through this recent stuff but have only heard from 2 people that have said it helped them longer term ( Barbara being one) and a friend of a friend ( suspect on this second guy, he may of never had reliable PFT so could be an asthma case and not COPD for all I know). Read in the blog section where others have commented on their cell therapy.

    If you are to Stage 3 ( or less than 35% of lung function) my thinking is becoming to believe that best you can do is the meds and
    exercise ( living better watch your foods and all, maybe some common vitamins to help build the nutrients in the body up) is about
    the best it is for now. Does it make any sense that cells that let your body get to it's condition can be taken out washed off and put back in to make you better. Analogy have you tried fuel system cleaner in your vehicle ( did it help? pretty expensive fuel isn't it!)

    I am new at this even though I have probably had emphysema for close to 10 years ( when I first noticed shortness of breath without activity). What your present condition of lungs are at present, above 35% if not 40% getting the stem cell treatment may be of great help. Their is a lot of hype by people making money off treatment and for emphysema I think it most likely will be and is a waste of money.

    There is a reason Australia is clamping down on stem cell therapy, if it was at a $3K cost, why not but when it is as costly as many are charging it is nothing more than a money maker for most i95+%. There is about zero proof that stem cell treatment is what actually helped anyone's physical condition. Myself I feel physically worse than I did 3 months ago before I got the $10K treatment but if a person is not hurt by the cost why not let someone get some of your wealth, you will spend it on something anyways.

    This being said I do wonder what using cord blood ( placenta) treatment would do, rumor has it, it a is stronger treatment ( better), of
    course you are looking at trusting unregulated medical practices for the most. As long as you are spending money in their country they do not care how you end up with other than them getting some of your money. Best of luck and why did our cells not prevent this to start with.
    Last edited by willis; 06-04-2015 at 05:53 AM.

  5. #5
    Join Date
    May 2007
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    12,909
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    Default

    One of the key questions that doctors/researchers want to know is why do some patients respond to treatment and others do not. One of the problems with patients seeking treatment is that they want something that works like an antibiotic does for an infection and that just isn't possible at this stage. They want proof where there is none.

    I have said many times that I believe that complementary treatments have helped me along with stem cell treatment. By this I mean growth factors, supplements, acupuncture, medications, diet. I have been able to reduce the number of liters of oxygen I require. I have much more stamina and energy. I have reduced the medications I take to 1 puff of Advair and 1 25mg of Losartan a day. I can walk much further than I used to be able to do. I can do things like change a bed, make meals, grocery shop, lift and bend down and on some days vacuum even though I suffer tremendously from NOVAC disease. I never give a thought any more to things like showering or laying on my back. Going upstairs is not difficult like it used to be. COPD no longer controls me. I control it. Am I able to go without supplemental oxygen? No, I'm not, but it was never an expectation I had. Patients need to have reasonable expectations of what these simple treatments can do. It's all about the degree of improvement and scientists are unable to see that there is a line between quality of life improvements and cures. They have no idea for the most part what it's like to have a chronic or terminal disease.

    Today was a good example of a positive change I've had since being treated. I went to lunch with my son and didn't notice that my portable oxygen wasn't working until we finished. It was working when I left. On the way out to my car which I hadn't parked near the entrance, I noticed I had no flow. I drove the 10 minutes to my house completely relaxed. Could I have done that in the past? No way! I would have been in a full blown anxiety attack thinking I was going to pass out. When I got home today, my saturation level was in the high 70's. Had this happened in the past, it would have been in the 50's or less. One time I dropped to 42.

    So can I do everything that well people can? No way, but I can do a whole lot more than I used to. I think every person should be able to decide for themselves about treatment. Having government mandate what really is the practice of medicine with these simple non manipulated treatments is over reach. It's doing far more harm than good in my opinion.
    First treatment in 2007. Pioneering ever since.

    Barbara

  6. #6

    Default

    I just had my stem cell treatment for COPD over a week ago and I'm currently completing my PRP treatments. I was given twelve syringes, filled with 1.5 cc's of PRP to be nebulized every 2 days (prp are kept frozen). I feel I have more energy, but have not noticed any changes/improvements with my shortness of breath. I understand I may see some effective results in about 3 months?
    I don't have a cough, my biggest issue is short of breath upon physical exertion. My FEV1 level was 1.00, prior to treatment and have not measured post treatment. My physician wanted to put me on Prednisone 20 MG and oxygen, however I'm trying not to be dependent on it until completely necessary. I'm currently on Theophylline 300 MG X 2/day and Anoro Ellipta for inhaler. I have not had any exacerbation to date and I'm able to walk 30 minutes a day (slowly). I have positive vibes that the stem cell treatment will help. I'll keep you posted on my progress.

  7. #7
    Join Date
    May 2007
    Posts
    12,909
    Blog Entries
    5

    Default

    Thank you for letting us know how you are doing!

    What clinic did you have treatment at? I think your choice to try an alternative to 20mg of prednisone daily and supplemental oxygen is sensible. I call prednisone the drug of the devil. If down the road, supplemental oxygen is needed, you may still be able to avoid the prednisone.

    Did you have other treatment besides the take home prp treatments? It sounds like you did, but I wasn't sure from your post.
    First treatment in 2007. Pioneering ever since.

    Barbara

  8. #8

    Smile

    I'm part of the clinical trial with BioHeart.

    I had my initial stem cell treatment via adipose tissue and PRP treatments, which I took at home (nebulized).

    My FEV1 prior to treatment was 1.0 and 30 days in I'm at 1.33. I have more energy and a very positive outlook on the progression.

    Thank you for your advise/input on the devil's drug.

  9. #9

    Default

    This is interesting, 1.00 is similar to me but I think your RV effects exercise ability a lot, mine has been 241% and 198% both prior to treatment. I have not had my PFT done again since treatment but at about 3 weeks to 8 weeks my
    bicycle rides were better. Since this time 4 1/2 months I am worse than before I done the treatment. Bought a motorcycle and
    I feel normal breathing when riding but stop and go traffic is not fun. At Altitude 1K feet it was very noticeable the pressure is absent/less
    than sea level in Florida. At altitude going down steps would tire me (breathlessness).

    There was a place in Sarasota that had PRP treatment $1K may have to check into it.
    Good luck and please keep us posted.

  10. #10

    Default

    Hello Willis,
    I appreciate your input. I was unaware of the Residual Volume effects, I was just concentrating on FEV1 levels, because that's the only numbers my physician discussed with me. My RV was at 111% prior to treatment and I have not had a PFT from my Dr.'s office after treatment. I purchased the Microlife asthma monitor machine, which only measures my FEV1 level.
    Have you previously had PRP treatments? Prior to starting the clinical trial I checked out the Lung Institute in Tampa, FL. It's nice place with a professional environment.
    Take care and enjoy those motorcycle rides!

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