Nine Month Update

[Howard]

Beginning to show progress as the following tests show:

August 2007.................FEV1 - 14% (2Lpm)
September 2007...........Stem Cell Treatment
December 2007............FEV1 - 15% (2Lpm)
March 2008..................FEV1 - 15% (1Lpm)
June 2008.....................FEV1 - 18% (1Lpm)

This may not look like much to some people, but to us we are ecstatic. Our take is that the stem cells began working and were searching around during the Dec - Mar time frame and really started working on the lungs between March and June.

Two nurses have listened to my lungs (and also my doctor) and they all agree they are hearing more air moving through my lungs. I am also able to do more (such as using my tractor and raking leaves in the yard). Granted, I am still using oxygen on level 2 for such energetic tasks, but most of the time I can drop it to level 1 and for several hours during the day and at night I do not use it at all.

Before treatment, I was using level 2 all the time and sometimes had to bump it to level 3 for even light activities.

Not only do I feel better physically, but of course psychologically too!

So to those who have had treatment and to those who are considering it, please do not feel that if you have not seen significant improvement in 3 to 6 months, don?t give up. It was at the 9 month time frame that I really feel good things are starting to show up.

We are expecting to see continued improvement and while we have been ?invited? back for a booster, with the numbers improving as they are, we have decided to wait and see.

 

[alex]

Howard,

Just curious; what was the method by which the stem cells were given to you? How many transplants did you receive? What type of stem cells were used?

I am glad you're seeing improvement; I am very happy for you.

I am looking into treatment for my husband and am trying to narrow down our options.

Thanks,

alex

 

[Howard]

The cells were administered by IV and received 1.4 million Umbilical Cord Stem Cells. It took about 30 minutes per patient and there were 4 of us so total time at the clinic was probably less than 2 hours.

Send me a private message and I will give you more detail.

 

[rosech44]

Yeahhh Howard!!!

What Great News!!!! Thanks So Much For Sharing With Us, It Looks Like Your Improvements Are Just A Beginning---looking Forward To More Improvments For You----

 

[barbara]

My update

I believe Howard is experiencing what many of us have as far as the disease no longer progressing. I just had a spirometry test this morning. My old FEV1 was 37% and that was over 2 1/2 years ago. Today's test was FEV1 39%. I have said for some time now that the treatment I got at SCB was little more than an anti-aging treatment and I continue to believe that. It has halted my progression, however, I believe my new FEV1 improvement is due to my use of the PowerLung and only the PowerLung.The supplements I take add to my wellness. I do regret spending too much money on my first treatment, however, I am certainly as enthused about the possibilities of stem cell therapy some day helping with my disease as I ever was. I am a lot less likely however, to believe all I am told and I will continue my quest to reverse my disease. I think that technology is moving at a fast clip and am forever hopeful that something will be found for all of us.

 

[Mysty119]

Yeeee Hah!!!!!!!!!!!!!!!

I am very happy for you, Howard. I will be on my way to treatment soon. Have you used the power lung at all? My FEV1 was 21% since 2001!!! I think maybe one time (and I went to the doc every 3 months), it was 20%. I started using the power lung sometime in April or May (forgot when I got it). At the end of May, I purchased a digital Peak Flow Meter. I do 2 to 4 readings a day and write it down. The readings vary with the time of day or nite I do them. But----from 5/28/08 to today, my readings have been from 19% to 29% !!!!!!!! Keep in mind that I was harboring a cold from the last part of May to the beginning of June. The power lung really helps a lot!! I know it's helped my %age!!
I hope you have continued success.

 

[karl wagner]

just my twop cents

If i were starting over i would only consider direct injection into the pulmonary arteries with adult stem cells.I don't want to discurage anyone but from all my studies adult cells seem to have the best results.This will be somwhat contravertial but my doctor feels IV injection does not have enough effect on the target, you need direct injection. Also most cord blood companies are using "grey or black " market blood.

My doctor is very expensive but there are other companies that do direct injection for copd

P.S. sats are up pressures are down. I am now dropping 50% of my meds.

 

[jill]

Lung's

So nice to hear something positive,It's just going to get better

 

[barbara]

Don't agree

I forgot to tell Howard that I am happy for him as he is also no longer sliding down the hill. Karl, I don't agree with you that most companies that do uc cells are using grey or black market cells. There are some very good companies out there that follow everything they should to make sure the labs follow all of the GMP's and they do make safety their main consideration. Many purchase from labs in the U.S. At a recent stem cell conference, I was told that there was talk that all companies not doing business in the U.S. should really be shut down. What audacity in my opinion. If it were not for some excellent doctors (many of them are U.S. doctors tired of the red tape and tortoise pace we are going at in the U.S.) willing to help patients with stem cell therapy where it is legal, these patients may have died or be a lot worse off than they are now. Some questionable clinics I sincerely hope to see go out of business. I agree on that issue. There should be no illness or problems that occur. When a clinic starts having these problems, it is a good indication to me that there are serious problems and I would never consider treatment with any of them. My next treatment will be an autologous treatment, but safety was not a factor in my decision as I feel comfortable with uc doctors who follow all safety standards that we must demand and expect.

Karl - I think your progress is great also. The cost is not something many could afford, but nevertheless you have pioneered a treatment and I applaud you for that.

 

[Jeannine]

Karl

Where did you go for treatment? Do you have COPD?

 

[anney_uk]

Mysty

Mysty - I am interested in your peak flow readings. Could you post actual numbers - it would be a guide for me with my own peak flow numbers.
Many thanks
Anney

 

[karl wagner]

Jeannine

I went to Naples Fla at regenocyte and i had pulmonary hypertension and copd and was given three years to live. At my last vist I had a chance to discuss with my doctor, opions if my miraculas come back does not hold.We discussed bone marrow treatment but there is no way to get the powerfull cells i received with bone marrow. They bacically take the cells from your marrow and put them in your blood stream unaltered. With a blood draw you only find four or five cells but they are copied with growth factors and you tipically get more cells and they are stronger than natural marrow cells. The average inter lucken is 14 and mine were 400, supposedly five times stronger than marrow. Next there is cord blood. Now they could be injecting cherry cool aid for all i know. My dortor is pretty informed on all of it. Especially case studies and said either most or some of the off shore companies were using "grey or black " market blood , I don't remember the exact wording. I am very reluctant to say this but he also said someone died from an alergic reaction to cord blood. He went on about tissue matching but i did not catch it all also the part about IV and direct injection. I do remember the doctor with scb in Hawaii said it takes the blood of one hundred baby cords to treat one person with all the reaserch and treatments going on i think there's going to be a supply and demand problem that will lead to grey market blood. Then we went into embryo which we all know can cause cancer.
My purpose of this thread is to share the info on the direct injection , I think it makes a huge difference.I don't think i shared his method of treatment for copd with everyone on my last post.It's the same way i was treated for PH, a balloon cathiter injected into the pulmonary artires the cell recipe is a little different, more cd38 and 36 and less endothieal cells i would guess.
Barbara, when they give you three years you can't afford not to get the best you can get.You have to go with your gut. My doctor is probably only for the rich and shameless although i don't consider myself rich at all. And two cord blood treatments would total as much or more as a direct injection adult cell treatment which i beleive to get better results.
Anyway I'm just passing on info i have received in hopes it will benifit some of my pioneer freinds.

 

[barbara]

Too cautious may mean no treatment whatsoever

Karl - I don't fault you at all for doing what you did. Three years is a scary prediction although I am never quite sure how doctors are able to come up with these figures. I appreciate your updates. I agree that there are some shady companies, but I do not agree that all companies are doing what your doctor suggests. I also think that saying you are giving 100-150 million cells is a gross exaggeration. The fact that someone died, to me, indicates a problem with the cells in the first place. Blood cells are not used, so matching should not become a factor. I think that we all need to be extremely careful who we deal with. I can't dwell on this enough, however, I think if a person takes it to the extreme, then they will very likely decide against all types of therapies as well as all medical help and surgeries here in the U.S. My brother-in-law got a staph infection that almost killed him. He was having prostrate treatment at a hospital in Idaho and contracted it there. The statistics are alarming about how many doctors simply do not wash their hands here in the U.S. after seeing patients. You can read all about it in the latest Reader's Digest. If their article is to be believed, that is as scary or scarier to me than getting treatment where I can have the cell certification for purity and source. I think the direct injection holds great promise and I wish you the very best. Thanks as always for your good posts.

 

[Henry Young]

Treatment parameers

Howard,

Do you remember the parameters that you were given for your treatment, e.g., type of stem cell, administration route, and dosage?

 

[barbara]

Welcome Dr. Young

Dr. Young - You are a welcome addition to our forum. I do hope Howard will be able to answer your question. It is doctors like you that are going to open the doors for those of us that are ill. Again, welcome and I look forward to your participation.

 

[Howard]

Howard,

Do you remember the parameters that you were given for your treatment, e.g., type of stem cell, administration route, and dosage?

On Thursday, Sept. 20, 2007 at 10:00 AM I was treated for my very severe COPD with the following Human Cord Blood Stem Cells:

Mononuclear .........................100 million
Dendritic .............................. 1 million
Endothelial ........................... 1 million
CD34+ (Progenitor) ................ 1 million
CD133+ (Progenitor) .............. 1 million

Administration Protocol:

Drip ..................................... Saline slow drip
Injection Method .................... Intravenous
Injection Site ........................ 100% of the cells injected through the
IV line.



Additional Information: My son recently had a baby boy (June, 2007) and they saved the cord and blood in case of a need for stem cells later. The report they sent to me said the lab had determined that the Nucleated Cell Count was 558 million from this child.

If you have any other questions, feel free to send a private e-mail.

We are very interested in your efforts and are anxiously watching for more information.

 

[barbara]

Information for Dr. Young

Dr Young's requirements
For those of you that are interested in working with Dr. Young, I have received an e-mail from him.



If your group members would want the stem cell / nutraceutical treatment, they need to be tested to see if they are missing DNAse-I, DNAse-II, RNAse-I, or RNAse-II. Just have them have their physicians order the test. it needs to be done on their white blood cells, so a venipuncture is all they would need.



My understanding is that if any of these are missing, you would not be a candidate for his current trial that he is proposing. He is having difficulty replying to individual posts, so at this time, if you are considering volunteering, you will need to have the test done to see if you qualify. Then he will proceed with obtaining additional information from you. I hope you all will be considerate of his wishes as this is a great opportunity for many and we need to be mindful of his time and generosity in providing it. I did reply elsewhere asking individuals to e-mail him directly, but after receiving his e-mail to me tonight, it is clear that this test must be the first thing a person would do to see if they can participate, so please do not e-mail him until you have had the test done.


I have posted this in two places so hopefully you all will read it!

 

[anney_uk]

anney-UK

Are these tests required for other StemCell therapy clinics or is it just Dr. Young's clinic? Anney

 

[barbara]

As far as I know, this test is something Dr. Young feels is important. He is checking on how best to have patients get the test done as apparently it is not readily available from many doctors and the labs they work with.