Hello from California

[Pauld]

Hello
I'm from Northern California and have been lurking here for a few months. I have COPD and have been proactive to keep it at bay but it is still getting slowly worse. I nebulize with Glutathione and Silver, take vitamins and nutrients and exercise daily. My doctor has told me that Stem Cells are possibly the only way to actually stop the advance or the disease. I am currently looking at going to either the Lung Institute or Bioheart in Florida. This forum has been very helpful and informative and I would like to thank Barbara, Jeannine and all involved. I know it takes a lot of effort.
Thanks Paul

 

[barbara]

Thank you Paul. Your kind comments are appreciated. Sounds like you have a visionary doctor!

 

[willis]

Lung institute seemed to be highest priced that I found in USA and when I asked them about why, no reply.
If I have this right they were $12K for adipose ste cell treatment, $7K for Platelet Rich Plasma by IV treatment....... Bone Marrow no idea
and heard it was less stem cells for COPD treatment.

Bioheart was one of the least expensive when I talked with them long time ago ( trial COPD treatment) $5K.
Think Mexico was on offer then, now it says 5 sites......... seems as long as they have been in stem cell treatment they could at least
be descriptive of who, what and where that they have on offer is available. They may of been $10K for the COPD stem cell therapy ( my bad if so). Trade secrets may be reason they do not have much listed instead of my fly by night operation thoughts I have on them.

Plenty of places to get stem cell therapy, if you only want the basics PRP Patelet Rich Plasma by IV or Nebulizer I have seen it on offer $1K or $2K. All of This is outpatient treatment and common now. I do not see prices for a treatment of all 3 combined being more than $5K in the future............. A lot of middlemen in the business that will be weeded out also. I hope others can list prices and pertinent info also as
this is a non insurance claim burden.

 

[willis]

I am not recommending any of these, just a sample of what is out there. Most likely is a place within 100 miles of you that has it on offer also. You may have to look at regenerative treatment/medicine. Many are through middlemen

Note from Barbara - I had to edit your post as we do not allow links or promotional material to be posted except by invitation in the Ask the Doctor section or press releases in the Promotional section.

 

[barbara]

"Plenty of places to get stem cell therapy, if you only want the basics PRP Patelet Rich Plasma by IV or Nebulizer I have seen it on offer $1K or $2K. All of This is outpatient treatment and common now. I do not see prices for a treatment of all 3 combined being more than $5K in the future............."

Yes, it would be nice if insurance covered treatment, but it's not going to happen in the near future. Orthopedics will come first, in my opinion. The prices you mention are not something I see as common, nor is the treatment you've described or are you stating that outpatient treatment is common? You have me a bit confused.

BioHeart does conduct studies under an IRB. Patients who wish to participate must meet certain inclusion criteria and agree to follow up after treatment. The Lung Institute treatment is not a simple prp/nebulizing treatment. There is more involved. I don't believe they even offer bone marrow treatments. I would not agree with your statement about BioHeart being a fly by night operation. That's really not a fair or accurate description.

Patients need to be vigilant when choosing a clinic. Unfortunately, using price/location alone as a guideline, is not always the best way to determine which treatment/doctor/clinic is best for someone. Also, when asking about the costs, patients should inquire about post treatment options/requirements - medications, supplements, additional treatments, etc. These costs are usually additional.

 

[willis]

"Plenty of places to get stem cell therapy, if you only want the basics PRP Patelet Rich Plasma by IV or Nebulizer I have seen it on offer $1K or $2K. All of This is outpatient treatment and common now. I do not see prices for a treatment of all 3 combined being more than $5K in the future............."

Yes, it would be nice if insurance covered treatment, but it's not going to happen in the near future. Orthopedics will come first, in my opinion. The prices you mention are not something I see as common, nor is the treatment you've described or are you stating that outpatient treatment is common? You have me a bit confused.

Prices from around 10 Places ranged from High $12K to $5K for the stem cell treatment/transpant itself.. Additional treatments and meds would be up to each person I would think. Acupuncture, laser treatment, heat therapy, after treatment medications on and on and on would be just that, additional.

It is already a crap shoot if Stem Cell transplant does anything to help COPD and adding multiples that also have no known/proven track record would be considered add ons and nothing to do with the stem cell therapy itself. Myself I would give all additional treatments/money makers/fillers a pass unless it's benefits have some proof. Anything other than getting the Stem Cells themselves from one place to the
LUNGS is pretty much eye candy and more costly hope and dreams of help.

I sure wish someone could post some proven additional add ons,,, then we could all just look for who provides that services.

BioHeart does conduct studies under an IRB. Patients who wish to participate must meet certain inclusion criteria and agree to follow up after treatment. The Lung Institute treatment is not a simple prp/nebulizing treatment. There is more involved. I don't believe they even offer bone marrow treatments. I would not agree with your statement about BioHeart being a fly by night operation. That's really not a fair or accurate description.

Bioheart website is less than helpful and non professional compared to many others who provide Stem Cell transplant that have been in the stem cell field much less time. ( BioHeart reminds me of the movie show me the money)
The IRB was it more than a way to get around the no stem cell treatment of past ( they use 2nd party people and facilities for the transplant). Charging you and then doing a follow up questionnaire or phone call is the same as others without IRB is doing on this
unknown treatment. I have not talked to any offering the service that are not doing follow up check ups on clients ( not patients who must return for check ups and further treatment). We will call you and keep tabs on ya!

Lung institute, I wish I would of kept the e-mails, but basically for the stem cell transplant $12K ( nothing stuck in my mind that they were
doing more than others, get the stem cells out liposuction and back in by IV,,,, no special sauce that I remember that would put them
above others). Their PRP treatment by IV was $7K by itself if one wanted a cheaper alternative to adipose from fat treatment.
pretty much they all are using similar equipment and processing of the cells the same.

Patients need to be vigilant when choosing a clinic. Unfortunately, using price/location alone as a guideline, is not always the best way to determine which treatment/doctor/clinic is best for someone. Also, when asking about the costs, patients should inquire about post treatment options/requirements - medications, supplements, additional treatments, etc. These costs are usually additional.

I am most likely thinking/feeling different than many on stem cell treatment. I have not heard anything from those that have proven COPD emphysema that it is more than a feel better for a while treatment until something better comes along. Paying someone to be in a trial/IRB
is still being a client and not a patient....... Doing stem cell transplant is at this point a client/provider business, pretty much like buying vitamins that require someone to put them in you ( it might help).

IF I am missing something that really enhances this stem cell treatment, please provide some standards all of us should consider/follow.
It has only been one month for me since treatment, my breathing, exercising and health felt better a year ago when I still smoked.
I do ride a bicycle 10 miles most days and have a good bench mark to rate my lungs function ( Has anyone's PFT gotten better since treatment?).

So far at this point, cost is pretty much the determining factor in my book. It is no longer just a few places to get the treatment and it is pretty much being done in the same manner. I posted 3 service providers I thought had good websites explaining their procedures and service that may help others or at least an example, guess it is not allowed ( deleted). You are on your own for gathering info and deciding who to use for the treatment or why to use a provider.

Barbara mentions post treatment for the stem cell transplant,,, hmmm first I have heard of it. A pulmonary doctor has several things to help maintain lung function pre and post but nothing that pertains to stem cell transplant itself that I have been told ( a change because now I have had stem cell treatment). I wish we could jump up and down 10 times a day and the cells would do better

 

[barbara]

Willis - What is unfortunate is that COPD has some of the worst research funding as compared to other major disease killers in the U.S. What funding there is seems to be spent on finding more ways to drug patients, stop smoking campaigns and other non regenerative medicine research.

Many patients have found that stem cell treatment stops the progression of their disease and gives them quality of life improvements. I know of no scientific proof however that actual lung regeneration has occurred in patients who have received autologous stem cell therapy. Not all patients respond with quality of life improvements either, but many do.

It is simply not feasible to think a doctor or small company can afford to spend the millions required and the time to conduct a full blown FDA approved clinical trial for something that most believe is medical treatment that is simply given as the practice of medicine. I shudder to think where medicine would be today if such things as the first heart transplant had to go through years of trials. Physicians provide a level of innovation and personal care for patients that is often lacking in clinical trials as well. There are many in the industry who want stiff regulation. I am not convinced they want this to protect patients; I am far more convinced that they are wanting it to protect their own interests. FDA approved drugs continue to be one of the major causes of death in this country. You will find few incidents, if any, of anyone being harmed by autologous stem cell therapy. The few cases of injury or death have been attributed to physician malpractice, not the stem cells themselves.

You stated that complementary therapies have no effect on the stem cell therapy itself. I don't agree with that because many such treatments are designed to enhance the patient's health which has been compromised from disease. There is research that has been done on certain growth factors/supplements and even diet. Do these affect the actual stem cells that were infused, modifying them in some way? No, but becoming healthier will have a positive effect overall. Perhaps, my definition of therapy is broader than yours. One growth factor in particular, HGF, is very promising. I injected it for several months as part of my treatment. My lung function increased about 7% and the quality of life benefits post treatment, following the suggested regimen, were very positive for me. Improvements were slow and gradual, but stem cell treatment has profoundly changed my life for the better.

As for the info you posted on commercial clinics, the reason we do not allow that type of post on the open forum is that there were incidents in the past where sales reps and others looking to promote a certain clinic or company, attempted to advertise and recruit patients. This is not acceptable. We rarely moderate comments except for links to company websites or company information such as phone numbers or posts that include profanity or rudeness to other members. I hope you understand. It was nothing personal. I appreciate you taking part in the open forum. Thank you.

 

[grimm]

reply

I mostly agree with willis,

There just isn't any medical /science evidence other then anecdotal . I have known a few that used their last savings without any improvement or only minor improvement .
I've gained just as much improvement with programmed exercise, Rehab therapy.
I went from fev1 of 32 to 43 on this program. I'm not bragging because it went down again but not as low.



I do think and it's only my opinion that there's lots of greed to go around ,

 

[willis]

Barbara mentions supplemental treatment, I agree on them if you see they help you without the stem cell treatment.
The stem cell treatment should be able to stand on its own......... same as the supplements. I done 3 treatments as a package deal
PRP Nebulized, PRP by IV and Stem cell from fat tissue by IV... Some are selling these individually which makes little sense if the person is getting fat cells, while you are in the chair for an hour waiting for IV drip what is it to draw blood and prep it for a neb and IV

 

[JR]

Yes, the evidence is mostly anecdotal, but the problem lies with an outdated regulatory system, not greed at clinics. Who is going to put forth millions of dollars and years of research to conduct clinical trials for something like stem cell treatment that uses our own stem cells? CIRM didn't want to do it even. There's just no money in it. The brass ring is off the shelf products that can be commercialized and sold for a huge profit by Big Pharma, not in medical procedures done at a doctor's office. I think there's been plenty of discussion about this on this site.

I say if you want to try it, safety data is on your side. Efficacy? - to be determined. If you are using your last penny, then try exercising at home like grimm does or go to rehab if you can afford to. Doing nothing really isn't a good option when you have a progressive disease.

 

[Pauld]

Went to Florida

Last week I made the trip to Florida. I went to the Lung Institute for three days of Venous treatment and then to Bioheart for Adipose, banking and PLP for nebulizing. Both were a great experience and everything went well. My stomach is still a little sore from the lipo but no problems.

I chose the Lung Institute because they have a lot of experience and have a good protocol for the treatment and following. While there they give you a shot of Growth Factor as well as nebulizing with Glutathione and Albuterol every day prior to treatment. Post treatment they recommend nebulizing with Glutathione every other day. They also recommend taking Stemtriton, Mitochondrial Energy Optimizer, DNA Protection Formula and RNA Critical Telomerase Element as well as using a power lung, all available from SeaChange.

I chose Bioheart because they offer banking and Platelet Rich Plasma for nebulizing. I arrived at 1pm and was finished by 4.

Overall it was a great experience. I would recommend either Clinic. Both say it takes about three months to see full results. I will keep the forum updated. Thanks again to Barbara and Jeannine for this site.