Looking for COPD help in Arizona

[azwoman]

I live in Phoenix, Arizona and am looking for a good pulmonologist that may concern alternative medicine treatment for COPD. I am also very interested in stem cell treatment or any other treatment that may be successful in addition to or instead of traditional prescriptions/medications.

I appreciate any feedback.

[barbara]

I don't know of any pulmonologists that fit the bill in Arizona because I don't live there. As the host of the Ask the Doctor this month, Dr. Kadish, commented, COPD stem cell treatments are not that well documented. There is a long way to go before anything definitive as far as improved lung function or regeneration can be known. Look for a clinic that does offer pre and post testing or requires that you do it yourself, if you really want to base the outcome of a treatment on something more than conjecture. I am guilty too of just going off for treatment when for a few dollars more, I could have made an appointment with my own doctor for a lung function test.

My own doctor, Dr. Terry Grossman is an MD who also uses alternative medicine in his practice. He has had no qualms about prescribing Daliresp for me and he also supports stem cell therapy (he is going through the ICMS accreditation program). It's a great combination I feel because quite frankly, for me, Daliresp has done an awesome job and yet my doctor is open enough to not just put the kabosh on other alternative treatments. I feel lucky to have him. I hope you find a good doctor in Arizona.

[purplerain]

I've been looking for a place for my Father to get cell's and checking out this forum and awhile back there were wonderful review's for some people JC the fox and Barbara who were doing very well,I haven;t seen anything from the fox but Barbara said a while back she had cells and was walking all over walgreens alone with out help,now seems like the focus is on a med and cells are not as good as once thought Is there any one out there that can say they got any benefits from cells,we don't have a lot of money to throw away if there is little to no help
I just remembered the fox did say he had been walking very well I have been looking so hard on here that it gets confusing,so what is the bottom line,Dad has been offered to be put on the lung transplant list but that scares me some
Hope I get some feed back on what to do,I would like my Dad around a little longer

[barbara]

Clinical studies are direly needed for COPD and many other diseases. There is simply no evidence that would lend support that every COPD patient is going to derive benefit from stem cell therapy. I don't know of anyone who has only had one treatment and felt they needed no additional treatments to feel normal or to not backslide. Some have reported improvements in various stages, others have stated they got nothing from treatment. So far, with the exception of a couple of offshore clinics, this evidence has all been anecdotal to the best of my knowledge. With that in mind, I feel that patients who are going to have to make significant financial sacrifices should explore all other possibilities first. I started taking Daliresp last November and the medication has made a significant improvement in my life. Statistical information compiled during the clinical studies required by the FDA for Daliresp have shown that lung function did improve for most patients. This was not anecdotal evidence. It costs a lot less than stem cell treatment or a lung transplant, so my point is, patients might consider working with their own doctors to see if they feel the medication is something that might work for them before committing financially to a treatment with no long term track record.

I still have high hopes that clinical trials are on the horizon. Without them, we are simply left wishing and hoping that patients by the hundreds will post about fantastic improvements and the media will be full of wonderful stories about stem cell treatment. Since that is unfortunately not happening, we are simply left with no solid evidence at this point. A few clinics are involved in the accreditation program with ICMS which I believe is a good program and there are some companies that have clinical trials going for some diseases, but no clinicals yet for COPD in this country.

[JC the Fox]

Purplerain - I have documented the improvement in my ability to walk for longer times before my sat's drop below 95. Even that, however, is anecdotal, as I have no doubt that some of the improvement is due to strengthening of other muscles; but I believe a lot of the improvement is due to the stem cell treatment. I just got back from Nevada today, where I had my second stem cell treatment.

I did not have my first treatment until February of this year, as I had to wait until the very end of January to have a full set of PFT's performed; and I wanted a verifiable baseline. I will have the next set performed on September 14th, and I will post those numbers here as soon as the VA pulmonologist checks the findings and releases the info to me.

The local VA doctor and I have agreed that he will not prescribe Daliresp until after these tests, so that they show only the results of stem cell therapy.

[purplerain]

Thank's the fox,I would read in the past a lot of positive outcomes with cell's you seem to be the only one that is getting benefit as far as this forum I was looking at another forum and they don't even want to hear the word( "cell's)
I know it take's years for a "drug" or "treatment" working with the FDA,my Dad spent hour's looking up thing's
Is there any one else that have had more than one treatment and still not had any improvement,I know there is a Dr in So Cal that we are going to look into he take's the cells from the bone marrow,sounds painful but he's not to expensive
I will keep looking and I hope your cells work for you the fox,where did you go??may be if the place you went to are a better price but of course money won't mean your getting good treatment or cell's

[RichardN]

JC

Can you update us in the next few days to weeks how you are feeling and how your sats are performing prior to your pft ? Interested to see after your second SC treatment if you progress further from the first treatment

[azwoman]

Thanks for the feedback Barbara, where is Dr Grousman located. Also JC can you tell me where in Nevada? and Purplerain which doctor in California?

I appreciate the responses - thank you.

If any else knows of resources in Arizona please do let me know, as I have been a bit anxiety ridden over all of this.

[barbara]

Dr Grossman is in Colorado. I believe he may start to do stem cell therapy soon as he has joined the accreditation program with ICMS. I will ask him.

JC was smart to do PFT testing. He also is smart to exercise which as we all are told we should do as it can help out a lot with this disease. What would be good however, would be to have at least 5-9 other patients with a similar amount of lung function as JC has that got the same treatment and were also doing a fair amount of walking. Then this could be compared to yet another similar group that got the same treatment but did not do any exercise. This could help determine whether the stem cell therapy was actually responsible for increasing lung function, if indeed, his PFT's he will have show an increase. Unfortunately, this kind of testing is not taking place in any clinic that I am aware of in the U.S.

Purplerain - There are many of us on here who have had multiple treatments. Unless a patient has a very mild condition, I don't know of any type of stem cell treatment that is going to result in any significant increase in lung function after only one treatment. I do think inflammation can be tamped down with only one treatment, but that's about it. I also think there is a placebo effect that is real for many patients. Some treatments use growth factors as well which give you a boost initially. I had 3 treatments at the clinic where JC went and there is no way I could come close to walking like he does. I still need supplemental oxygen 24/7. I do however live at a high altitude. I have also had marrow extractions (not nearly as bad as they sound), an adipose therapy which I thought was going to end my life, umbilical cord and placenta treatment. I also have noticed that stem cell therapy does not prevent bronchitis or viral or bacterial infections all of which I have come down with following treatments. I don't know if I caught something from traveling or from the treatments, but I can remember several occasions where I was ill after getting therapy.

I don't mean to dash anyone's hopes, but right now, it's a crap shoot. If you have the money to experiment, and it's what you really want, go for it. If it will create a hardship, then why not try Daliresp first as I have mentioned before? Keep in mind when calculating costs that you may need more than one treatment and there are also travel costs involved. It becomes an expensive, unproven experiment and that is probably why the other forum you visited doesn't even want to allow members to discuss stem cell treatment. In my opinion, that isn't fair to members who want to learn more about it., but whoever made the rule, owns the forum and that's the way it is. This forum was started because Jeannine and I returned from having stem cell therapy and became very ill afterwards. There was no support out there or discussion on the subject. Just because we started this forum, doesn't mean however, that stem cell therapy has any kind of great success record yet. It's still in its infancy. There is so much yet to learn and there are a lot of sharks in the water simply wanting to relieve patients of their hard earned money.

I am sure I sound like a broken record most of the time, but treatments can be dangerous, expensive, non productive as much or more often than treatments that have significant, lasting results. I believe the potential of stem cell therapy is there, but all the answers just aren't available yet.
Research seems to drag out and many are running out of time. This is what is so frustrating about the lack of serious clinical studies in this country, but without them, like it or not, we aren't going to have any scientific evidence to help with our decision making.

[azwoman]

Hey thanks Barbara! I have a meeting next week with an alternative medicine doctor. I will post if anything of interest comes from it. Again thank you for taking the time to share the wealth