Introductions

barbara

Pioneer Founding member
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.
 

Ivan

New member
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!
 

barbara

Pioneer Founding member
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.
 

Sean Mathews

New member
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
 

barbara

Pioneer Founding member
Welcome Sean. Nice to have someone who is studying medicine who is already thinking outside the box.
 

shazza

New member
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!
 

mom2mastiffs

New member
Introduction

Hi, my name is Karen and as my screen name says I am mom to 6 mastiffs :rolleyes: 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
 

Kathy E

New member
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
 

barbara

Pioneer Founding member
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.
 

JuneB

New member
Introduction

Hello,
I am new this forum and very grateful for it. Someone very dear to me has been diagnosed with COPD, probably between stage 2 and 3. He does not yet require portable oxygen but has begun to experience progressive symptoms of coughing, wheezing, crackling in the lungs. Last month he started using a nebulizer but it does not always help. Also using the typical inhalers: Advair, Spriva, etc. Secondary issues include Type 2 Diabetes and family history of cardiac blockages.

I am doing most of the research on the subject of treatment because I have a bit more time and ability to do so, but I am not finding much hope in the general medical research. It seems that treatments are palliative at best. The information on your site is the most hopeful I have found. I still have so many questions and would like very much to communicate with others who have had Stem Cell therapy. Your experiences will help us to make important decisions. Perhaps it would be best to post my questions in the pulmonary forum.

Thank you for creating this forum for education and discussion.
JuneB
 

Joyce

New member
Time to Introduce Myself

I've been reading posts for awhile & hope this is the way to join in.

I have COPD & am heading to Sarasota next week for stem cell treatment. Please wish me luck & I will report on my results.

Joyce
 

stemcellsknight

New member
Hi to everybody.
I had a brainstem (midbrain) stroke last July. I was aged 29. At the moment I am looking for a possible cure for the sequelae.
Many thanks to the creators of this forum!
 

Mary-Anne

New member
hey,
I am Mary-Anne and 17 years old. I came here seeking a solution...no,let's be honest, I came here in search for a cure to my health problems.
I have had a hard time accepting that I, being so young, should have any health problems which go further than a common cold.
It's so frustrating and derpessing, my whole life changed so much. I was involved in an accident with an explosion and since that moment I have hearing loss, especially in my right ear. It is just such a unfair situation. I never was much of an party or disco girl, so I never did damage to my hearing until in one moment I couldn't prevent or foresee and everything changed. It will probably get a lot worse in time and I am fearful when I think that a future withouth hearing the birds, hearing my friend etc. awaits me. I am scared...and hopeless. My research showed that ia cure is still 20 years in the future - if it is ever possible.

My doctor told me I shoouldn't hold out hope for it will never ever become reality. It is science fiction and I should accept the facts. Everything else is scam. But I don't want to give up. If I have to wait 10 years, I wil do it, if only I knew I will have a chance of my hearing being okay then. I read that nothing's going to bring it back, maybe just a few db and that scatters all hope again.
What do you think? Is hoping to recover foolish? Maybe I am a fool, but being 17 I think it is not that dramatic being a fool. I still have time to learn. My second concern are teeth - regrowing teeth. Because of a brace treatment 3 teeth are damaged and will survive about 10 years...I hope there is a way to regrow teeth by then. But again - is it foolish to hope? Is it all just wishful thinking? I really want to believe it will be there in 10 years or so..but...it just seems to be too fictional.
Excuse my bad english, I am not a native speaker. I have improved, though, by researching solutions to my problems. At least something positive, eh? Thank you all.
 

barbara

Pioneer Founding member
You are very young and that is on your side. I would think growing teeth might be available in 10 years. It has already been done. As for hearing loss, so far, I know that some members on here have been very vigilant in continuing their search for stem cell treatment, but at this time, there really isn't much positive out there. Stem cells may or may not be what works best for hearing loss. I think the field is still wide open for how it will best be treated.
 

Connie

New member
Mary-Anne,
You are NOT a fool to hope. Hope is the seed from which miracles grow. Cures are discovered by those who hope. Without hope no one tries. I would say your doctor is the fool. All of us here are eternally hopeful. Welcome aboard.
 
Top