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Thread: Introductions

  1. #21
    Join Date
    May 2007
    Posts
    12,863
    Blog Entries
    5

    Default

    Cynthia - Please post the information any and everywhere you can. Your type of enthusiasm is always appreciated.

    Bob - Thank heavens you did not get mixed up with Cellulogix. How long ago was that? They are red flagged on this forum for good reason. I will send you a private message with some resources that you can research. Not everyone responds the same to stem cell therapy and some don't seem to respond much at all, however, I feel that even the most basic autologous treatment has value in keeping you healthier. You sound like a real fighter. Just make sure to let any doctors that you contact know of your medical history upfront. The good ones will want you to send your records to them anyway, but you might as well bring it up at the beginning. The clinic in Germany has done very few (if any) treatments for COPD. I would not recommend going there when you have choices closer to home that are more innovative and experienced in treating COPD.
    First treatment in 2007. Pioneering ever since.

    Barbara

  2. #22
    Join Date
    May 2010
    Location
    Houston, TX. USA
    Posts
    1

    Default 67 and scared

    I knew I had lung problems for 20 years, but somehow continued to sing and play my guitar with great aplomb and suucess internationally.

    TB in 1977, cured, and Cryptoccal ( spelling?) meningitis in 1988, also treated and cured.
    I smoked heavily until just 3 months ago, quit with Commit, and now it seems my breathing, the clogged feeling in my upper lungs is much worse so soon. I was happy the first two weeks, since I felt things improving and believed I was going to be, if not perfect, then reasonably healthy. Then this hellish feeling. Dr. said Emphysema, gave me prednisone and Levaquin and sent me on my way. My spiro readings, at the time of my visit 2 weeks ago when my lungs were really congested, was 37%. It's only slightly better now.
    I am tired of being so dependent on MDs, who really dispense the same inhalers, prednisone, antibiotics and 'see you later'. No support or help at all.
    Mucinex clears me up somewhat, to where the extreme 'plugs' of crap loose and I can get rid of them, so breathing a bit easier.
    I, too, believe we are being enslaved by big Pharma, together with physicians in America who really are nothing but prescription machines.
    So...help!

  3. #23
    Join Date
    May 2007
    Posts
    12,863
    Blog Entries
    5

    Default

    Ivan - Thanks for posting. You might also find our other forum useful www.copdliving.com Your doctor gave you something to treat your symptoms, nothing more. I consider prednisone the drug of the devil to be frank with you. It is useful when someone has an exacerbation that nothing else seems to relieve, but doctors hand it out like candy because they don't have anything else to offer COPD patients. You have a few options as I see it. Take control of your own health to begin with. Doctors don't tell you much of anything when it comes to COPD. There are a few good ones out there, but the rest of them need to go back and take a course in COPD 101. Stopping smoking very often makes some people feel worse, but it is one of the best things anyone can do for themselves, especially someone with lung disease. Research is finding out that with each cigarette you smoke, there may be some kind of gene damage as well as the strain you put on your lungs to do the work they were intended to do. Stem cells rush to the point of the latest damage, so a smoker's stem cells are having to deal with smoke damage every time the person smokes. It's a downhill battle for sure.

    That being said, you obviously are interested in stem cell therapy which to me holds the most hope of regeneration and reversal of lung disease that there is. COPD is 100% fatal. At this time, there is no cure with conventional medicine, so the best thing is to stop the progression and try to regenerate lung tissue with stem cell therapy. Without adequate clinical trials and patient tracking however, there is no way to tell if patients that report good results from their stem cell therapy have:

    A) simply responded to the growth factors in the stem cell "cocktail"
    B) had a cardiac problem that they didn't know they had that responds well to the treatment thus improving overall health and breathing
    C) decided that stem cells helped them and they now are exercising more and feeling better about life (placebo effect)
    D actually had some regeneration from the treatment
    E) had the inflammation tamped down which in turn would reduce mucus, improving breathing and diffusion

    There are undoubtedly many, many more factors that play a part. I am glad to hear that more doctors are at least asking patients for before records to confirm their lung function and are also doing some follow up work post treatment because without it, everything you read or hear is purely anecdotal. This causes many people to believe that they will respond exactly like someone else that had therapy responded. This is the area that most needs to be worked on in my opinion - getting a therapy that lung patients with similar types of lung damage will respond to universally. Hit and miss is very expensive for patients who are having to pay out of their own pockets for treatment.

    In the meantime, you might want to invest in glutathione treatments and a few supplements. Good ones are NAC, Stem Cell Advance, vinpocetine, curcumin/tumeric, fish oil to name a few. I am sure other COPD members have their favorites as well. For those using vinpocetine, I was told to give it 30 days to really see results, always take it with meals and work your way up the first week to 20mg. (10mg x 2 meals). You can go to 30mg as well, but no more than that. This should replace the need for prednisone and it has none of the horrific side effects that prednisone has. If you can find a good doctor, that is open to alternative treatments, always check with your doctor. If you use Coumadin, you may not want to use vinpocetine. If your own doctor will not prescribe glutathione, we have a doctor that participates on this forum that will do a phone consultation and prescribe it for you. Also, invest in a decent oximeter if you don't have one.

    COPD is a progressive disease. Start fighting it now and fight it hard or it can get the best of you. I truly believe that a cure is possible with stem cell therapy to work on regeneration and complementary supplementation that will target the triggers of the disease. I am currently involved in a study program that will be providing us all with some answers that are more than anecdotal. The program will focus on clinical trials with publication of the results in peer reviewed scientific journals as well as using the ICMS patient registry. I will keep the forum posted on this as things progress. Serious scientific studies are needed and some clinics are not interested in that. They are far more interested in how many patients they can get in for treatment, building up their bank accounts and caring little about patient outcome. Patients need to ask about post treatment follow ups. If the clinic they are thinking of going to can't provide information for other patients or is vague as to post treatment follow up, then I would choose a different clinic. The difference between cash and real care is great.
    First treatment in 2007. Pioneering ever since.

    Barbara

  4. #24

    Post Hello Everyone

    My name is Sean Mathews and i m studying medicine. I glad to be a part of this community, want to know and become a part of discussion for medical terms, tips and all over the discussions on causes, treatment and cure of diseases. Hope you all will get my sharing helpful.

    Best Regards
    Sean

  5. #25
    Join Date
    May 2007
    Posts
    12,863
    Blog Entries
    5

    Default

    Welcome Sean. Nice to have someone who is studying medicine who is already thinking outside the box.
    First treatment in 2007. Pioneering ever since.

    Barbara

  6. #26

    Post

    Thanks barbara, i appreciated it. I want to know about you, what role you are playing here?

  7. #27
    Join Date
    Jun 2007
    Location
    mexborough, south yorkshire, uk
    Posts
    146

    Default hi

    my name is sharon its that long since l was on here that alot of people will have forgotten me lol in 2001 l got a rare virus called acute disseminated encephalomyelitis which has left me paralysed on 1 side, the other side is weak and l cant talk, l have 3 beautiful grandchildren who mean the world to me and l love spending time with them!
    at the moment im enjoying furnishing my home, ive lived here a year, but alot has needed doing, ive always loved gardening, so cant wait to see it done
    and im always at garden centres getting plants lol
    what l want most in the world is to go for stemcell treatment and a few times ive nearly gotten there but then for various reasons, its had to be called off, but l havnt given up, one day l will get there!
    thanks sharon

  8. #28

    Default Introduction

    Hi, my name is Karen and as my screen name says I am mom to 6 mastiffs I am on the forum for osteoarthritis of my knees. As a Chinese Medical practitioner--acupuncture and herbal medicine I really do not want to do a knee replacement surgery.
    My husband does dog physical therapy and we have seen 6dogs so far who have had stem cell therapy for arthritis with amazing results when combined with PT. One was a Sheltie who had O/A of the spine and could not get up. After one STC treatment and one rehab session, he got up and is now going for walks!
    That lead us on a search for someone who could do adipose stem cell injections for me. Since we live in Phoenix we are going to try the Stem cell rejuventation center here. Waiting for an appt to be scheduled. I will let everyone know how it goes.
    Blessings to all of you,
    Karen
    Mom2mastiffs

  9. #29
    Join Date
    Jan 2011
    Location
    Northeast Alabama
    Posts
    4

    Default Another Newby

    Hi, my name is Kathy. I was diagnosed with acute bronchitus last year. I quit smoking 9 years ago and started exercising. I walked 3-4 times a week for 45-60 minutes and did Yoga/palates 2X a week. Last year I woke up one morning and could not breathe. I have read everything I can find about COPD and have decided Stem Cell treatment is the best treatment. I am looking for any and all information about treatment inside and outside the US. I plan to agressively fight this.

    Best regards
    Kathy

  10. #30
    Join Date
    May 2007
    Posts
    12,863
    Blog Entries
    5

    Default

    mom2mastiffs - I use an oral product for my horse who foundered and the results have been excellent. Stem cells are powerful healers, that's for sure.

    If your adipose treatment does the job, please let us know. Otherwise, please do not give up. Dr. Centeno (Regenexx) has led the way in treating orthopedic conditions with stem cells. He continues to fight for all of us everyday through the non profit he founded (ICMS). I agree with you in that if you can avoid invasive surgery, by all means do so. Best of luck with your treatment.

    Kathy E - I will send you resource information in a private message.
    First treatment in 2007. Pioneering ever since.

    Barbara

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