Second Therapy

[JC the Fox]

As many of you know, I had autologous stem cell therapy performed in Nevada in February of this year. My primary indication of improvement is the time I am able to walk (leisurely, without supplemental oxygen) before my O2 level drops below 95. That time was just a matter of 2-3 minutes to begin, but, in the middle of May, I had reached 45 minutes. In addition, my recovery time back to 95 was usually under 30 seconds, and my recovery to 97 was under one minute (again without supplemental oxygen).

Unfortunately, life isn't always simple and smooth. Toward the end of May, I started having severe dizzy spells (due to a form of vertigo, and unrelated to my lung problems), and I either could not do the walking at all, or I had to stop before my O2 levels dropped. It took me a long time to get over the dizziness and start the regimen again. Nonetheless, when I was able to finish my walks, my recovery times stayed short.

I wanted to have a full set of PFT's performed to verify that my lung function was actually improving; but I had to cancel my appointment with the local VA doctor, because my father was hospitalized. Perhaps I tried to do too much during that time, or I was exposed to sick people in the hospital, for I had an exacerbation of bronchitis that lasted longer than usual. I have begun walking again, and my last walk was over 35 minutes before my levels got to 94; recovery time to 97 was less than a minute.

I went to the local VA doctor today, and he was, in a word, surprised. Pleasantly so, however; as he told me that today was the first time that he had been able to hear my lungs move air. He also said that he heard no other noises, such as wheezing, and that my lungs were as clear as he had heard in the past 5 years. He then ordered new PFT's to be performed in September.

Since it has been 6 months since my first therapy, I am traveling later this week to Nevada to have a second therapy performed next week. It is my feeling that my long-term use of StemTrition (since October, 2008) and the autologous therapy done in February are the reasons for my improvement, and I expect that another therapy session will result in further improvement, which will be confirmed or not within the next six weeks or so.

JC

[barbara]

J C - Good to hear from you. No one else is performing quite like you. You have used Stemtrition a long time. I have too, but I could no more go for a walk like you can then fly and I had 3 treatments plus others prior to that. It will be nice to know what your PFT's show. I do feel that Daliresp has kept me bronchitis free. Keep up the good work.

[JC the Fox]

I discussed Daliresp with the VA doctor. It has not been approved by the VA yet, but he might prescribe it for me out of the system. Fortunately, my wife's insurance does cover it (albeit with a $45/month co-pay). We are going to wait until after my PFT's are performed, so that only the stem cell therapy will be the cause for any improvement or regression.

[RichardN]

I have just started taking this product. Jc and Barbara what are the dosages you have worked up to and take on a daily basis?

[barbara]

RichardN - You should not exceed 5 capsules per day. For children under 13, 1 capsule per day is the maximum recommended dosage. I take 3 capsules per day. My dogs and horses also take Stemtrition and they do very well on it as does my husband. The manufacturer recommends that you work up to the 5 capsules slowly. Start with one and then add additional capsules every 2-4 weeks if you wish.

It is best to take Stemtrition in the morning before breakfast on an empty stomach. If you have trouble doing that, take it with a piece of toast.

This product is not going to be like drinking a Red Bull, but there are good reported results from those that use it. It was also tested for 2 years in a human protocol and also has been tested in equines. Children with cerebral palsy have responded well and JC seems to feel it has helped him. I have noticed a difference in my pets for sure. For me, I take it for insurance.

DO NOT EXCEED THE RECOMMENDED DOSAGE however.

Anyone that wishes to order this product can do so here:

http://www.seachangeforlife.com/Stemtrition_s/39.htm

[JC the Fox]

During the initial study for the product (it was called Stem Cell Advance at the time), I increased my dosage very gradually over a period of months, until I was taking 6 capsules per day. I have reduced that amount and I'm now taking 4 capsules per day. As Barb suggested, I take all four the first thing in the morning, before any other medications, except for my inhaler.

[RichardN]

Jc how long did you maintain the dosage of 6/day before reducing down to four?
I think the fact that you were on this product for so long may have increased the benefit you seemed to have gotten from the stem cell therapy.

[JC the Fox]

I was taking 6 capsules per day for well over a year - I reduced my intake to 4 capsules earlier this year. I think that taking it for so long increased the benefits of actual stem cell therapy, as well.

I wish that I could have had a stem cell count taken before and during the study; then another count right before and after having stem cell therapy.

[barbara]

Without having stem cell counts before and after there is no way to know if the additional capsules helped or not or if it is the actual duration or neither of these things. Some people just may respond better than others. There is no proof at all that mega doses help, so at this point, outside of a study that is closely physician monitored, patients should not exceed the recommended maximum dosage.

I have taken Stemtrition longer than JC and my stem cell treatments have never given me the ability to do what he is doing, especially after only one treatment. I guess we are all different and respond differently.

[yorkere]

Hi, y'all....

Regarding the dose level of StemTrition (a.k.a. Stem Cell Advance); I've been on 5 capsules daily since July 2009, along with three 81mg tabs of enteric aspirin. This was at the suggestion of the Stem Cell Consultant at that time...

Barbara, et al, what's the justification for no more than 4 daily? I'm getting a bit concerned since reading this; maybe I should cut back to 4 capsules per day?

JC: What was the reason you went from 6 to 4 per day?

Robert

[barbara]

Yorkere - You were in a controlled study where you built up gradually to that amount, so not to worry. I would think reducing to 4 capsules per day for you might do just as well at this point. You could try it and see if you notice any difference. I did notice a difference between 2 capsules and 3 and also a difference between 3 capsules and 4. The best dosage for me is 3 capsules per day. Two wasn't enough and 4 made me feel a little lightheaded. My husband says I am just naturally dizzy so maybe that was it instead of the number of capsules.


For the study protocol you were in, the increase was very slow. Unfortunately, some people tend to think more is better and do not have the patience to build up slowly like the protocol had us do. Up to five appears to be a good standard for the maximum and it is what the manufacturer suggests.

[JC the Fox]

I, too, was in the controlled study, and my dosages were monitored by the consultant. At some point last year, I reduced the number of capsules from 6 to 5 (not sure of the exact date). Since I had actual stem cell therapy in February, and since the maximum suggested dosage is 4, I reduced the number to 4 at that time. I still take 3-4 81mg aspirins per day, as well.

Overall, I did show improvement with the StemTrition, but not to the extent or the quickness as with the stem cell therapy.

[yorkere]

Thank you very much for your responses; here is what I THINK I've learned from taking this stuff:

I was diagnosed in 2000 with severe, advanced gleno-humeral Osteoarthritis (shoulders). I had destroyed the joints from ~30+ years of constantly overloading the joints from gym workouts done the wrong way...

I spent ~2 years trying to find a surgeon I could trust for a "Total Shoulder Arthroplasty"; it's a horrible surgery that does NOT have a good track record; during this time the pain on movements was essentially almost constant and relentless (Left shoulder was the worst). The nature of the pain was sudden shrieking stabs of it on simple movements. During this search time I went onto physical therapy with a very skilled therapist, who did gradually begin to do me some good...I was able to keep putting off the surgery until I started on the Stem Cell Advance protocol in February 2009.

Didn't notice too much happening, but in December of 2009, I began a medical protocol which included daily injections of Somatotropin (Human Growth Hormone, HGH). About 3 months into that I began to note that the sharp vicious stabs of pain were receding, one-by-one...this has kept up 'till at this time, and for quite awhile now, there has been very little to NO discomfort at ALL! Range of Movement is still kinda limited, but no pain at this time...Physical therapy still goes on once a week.

I think that the two factors, Stemtrition & HGH together, may be responsible for my being able to avoid the shoulder replacement surgery, hopefully, for GOOD. I'll just have to see what happens...

Robert

[Bobcat]

I have been lurking on this website for over a year. I hardly ever see anyone post about treatments that did zip for them. I finally decided to go for it and went to the BioRegenesis Institute a few months ago and I got NOTHING from the treatment except a smaller bank account. I even had to pay extra for a blood test that no one bothered to mention and then was told it was $75 more to have the doctor interpret the results. Why not just put out a jar for tips? Nobody even called me afterwards. It was a major disappointment for me. I am happy for someone like you JC that says they are doing so well, but I'll bet there are a lot of others out there that have gotten stem cell treatment that have had little or no results. Not just at the clinic in Las Vegas but anywhere. I am getting fed up with all the glowing reports on websites. Show me the proof doctors. BS might sell for awhile, but not forever.

[barbara]

All members are encouraged to post their thoughts and experiences on this forum. I have to agree with you Bobcat that the occasional posting of one or two patients stating they have had positive results, is hardly enough evidence to state that a therapy is truly causing any regeneration or reversal in the disease a person suffers from. I encourage patients to post their experiences, good or bad.

I would truly love to see clinics start to put their money where their mouth is and begin to take the time and effort to truly do studies and clinicals of a significant nature. At this point, only the clinics that are working for accreditation or have it with ICMS and those doing verifiable clinical studies have any credibility in my opinion. I am not including university or hospital studies or therapies that are not available to the general public.

If you don't have a starting point (clinical statistics taken for all patients pre treatment) and you don't follow up after treatment with the same type of data gathering, then you really have nothing but the hopes that someone will say they are feeling better and that others are willing to follow them.

Patients really deserve better than this. I had my hopes up that there was some change on the horizon, but so far I have not seen it. It's just too easy to take money from patients and not provide proof of what you are doing for them. I am as gullible as others. I am told by a doctor or researcher that I have received X number of a certain type of stem cell and I have to trust that what they are saying is true, but I really have no way to tell. No proof has ever been provided to me. There is also the "overwhelm" them with scientific jargon approach. Patients have little understanding of what is being told them and therefore like to believe that whoever is telling them this is another Einstein.

I am a bit disillusioned myself having spent a lot of time and money on therapies, only to find that the drug Daliresp is providing the best results I have had in years for my disease. I do still believe in stem cell therapy, but I also think at this time, that many diseases simply do not respond as positively as what is hyped upon us. Also, one must consider that return visits can send the cost of treatment through the roof and out of reach for many people.

If a person feels they can wait, I think some major progress is being made and that the future will be brighter as far as having factual, not anecdotal information available to us.

In view of what recently happened with Fredda Branyon at New Hope Clinic, as well as other clinics of late, patients must be VERY CAUTIOUS. It is Buyer Beware. Just because a clinic tells you that what they are doing is legal, don't bet on it. Pay as little as possible pre treatment and as close to the treatment date as possible because if a clinic is closed down, you are probably likely to lose your money. If they accept credit cards, use one.

[danny]

I had adipose cells 6 months ago and didn't get crap from it. I heard adipose were supposed to have the most amount of cells and I heard it worked for IPF. Didn't do anything for COPD. Don't waste your money and everyone needs to push U.S. to move faster!!

[RichardN]

Barbara are you still of the opinion that stem cell therapy stabilzed your condition from progressing?

[RichardN]

Perhaps we could dedicate a thread to poll all members of this board to discuss
their individual experience with stem cell therapy. Where they went, what type,
and the percieived benefits if any. Even if your progression is arrested that has to be looked at as a benefit. If I went for treatment and could be sure that I will
not decline further I would consider the Sct a huge success.

[barbara]

I would like to see patients post more concerning their results beyond the first three months. I hear from too many that are very enthused a few days or a week after treatment, only to find that their improvements have faded a few months down the road. Patients need to be practical. Regeneration does not occur overnight.

Keep track of changes on your own in a notebook.
It will help refresh your memory and help you decide if any change has occurred and if it was worth thousands of dollars to you. It won't be scientific, but a person knows him or herself better than anyone else does.

I invite anyone that wants to post to post. In my opinion, the medication for COPD known as Daliresp in the U.S. and Daxas outside the U.S. should be the first line of defense against COPD. If that doesn't help, then consider a stem cell treatment. Therapy is very expensive and out of reach for many, however and few see much improvement with just one treatment.

I have seen NO published studies that would indicate any proven regeneration in anyone that has been treated for COPD. I am sure this applies for most other diseases as well. Most clinics are simply treating patients and sending them home. There is no pre and post data collected that is truly relevant. Many such as Bobcat indicate they haven't so much as received a phone call after treatment. I don't know if Danny did. Now in all honesty, how can efficacy be determined by that? The answer is that it can't.

We are all desperately ill and wanting a magic treatment. I guess I am even a little more spoiled. I want an increase in lung function after spending thousands of dollars. I believe that Daliresp can make that goal achievable for me. Many report 10-15% increases in lung function. This drug is now available in the U.S. as of June of this year. I only wish it had been available several years ago as I think it is the best medication I have ever been on since being diagnosed. It was hard to get used to, but now that I am over the hump, I have zero problems with it. For those that don't have COPD, have you explored alternatives for your own condition that might help you if you simply cannot afford gambling on stem cell therapy?

I am still an advocate for stem cell therapy, but it is way past the time for patients to accept testimonials and anecdotal evidence as gospel. Show me some proof of what you are claiming Doctor X and I will be very supportive. All we have now is a sales rep, doctor or researcher telling us that we are going to get millions or billions of just the right stem cells for whatever ails us. How do we know that? We don't! That is where the ICMS accreditation and registry becomes very important. If a clinic wants to be transparent and put me at ease, then they had better get in the ICMS program, initiate a legitimate clinical trial on their own or simply be honest and tell me that treatment is just a crap shoot that I am going to have to pay for whether it helps or not.

There is a lot of money at stake and companies know that. It is too easy to sell sick people on the idea of stem cell therapy. It is much harder and definitely more expensive for clinics to actually gather data on patients and track them and then actually do something with the collected data. Since patients are willing to go for treatment without any evidence that it will do them any good, there really is no incentive for clinics to change.

I truly am disillusioned and alarmed in some instances by what is happening in the industry. Patients are putting their lives on the line doing experimental treatments. Stem cell therapy is not without its risks. In return, would it be too much to ask that clinics adhere to guidelines such as the ICMS has? Is doing a study for efficacy too risky for companies? Maybe clinics don't want to know the answers that could come from such studies. If efficacy isn't proven, they risk patients not wanting to pay inflated prices for something that is most likely not going to do them that much good in the long run. That certainly would not be good for their bottom line.

[Gail]

I received the stem cell treatment for IPF last week. I must say that my experience was really good. I had a very positive interaction with the clinic before, as well as after, the treatment. The staff were all very caring and supportive. I was informed before the treatment that there were no guarantees of the treatment.
I kept records of my sat levels as I was ask to do prior to the treatment and have compared them to now. I have begun to see some 98's ( while at rest) ...I find that amazing since I haven't seen that in a long long time...I am now able to take deep breaths without coughing...and I didn't have to use 02 on my flight home which I did use on my flight to the clinic.
My family, friends and I are very pleased with my improvement...will I continue to improve? Who knows....will I regress? Again, who knows...I am relatively new with this but I believe with all of my heart that stem cells will be the treatment in our hospitals in years to come. I also want to add that with this treatment I had hundreds of people praying for me.

[barbara]

Were any spirometry tests given? Were you using supplemental oxygen 24/7 prior to treatment? If you had spirometry testing pre treatment, when will you be evaluated again?

I don't know of many clinics that would guarantee treatment. Most are too savvy for that. I can count on one hand however, the number of patients who have stated on this forum that they have gotten off of supplemental oxygen and have been able to stay off of it. In fact, I can probably count on one hand and not use the thumb or the pinky finger to keep track. My big question to doctors is why? If stem cells can reduce inflammation to a point that oxygen saturation levels rise (and I would guess that is where you are at now since there is no way your lungs could be regenerating in a week), then why aren't patients able to achieve better diffusion and get off of oxygen?

That brings us back to the importance of doing some legitimate studies/clinicals and unfortunately no one wants to do any. I have been down the road too many times. Some experiences were good, some bad. Some doctors nice, some not so nice. I have been pleased with my improvements after some treatments and I have been very unhappy at setbacks after lousy treatments. I do think stem cell therapy will play a role in the future of medicine, but for many diseases, I think there will also be a role for gene therapy and pharmaceuticals in conjunction with it.

In the meantime, clinics will continue to rake in patients who quite rightfully are seeking a solution to their health problems without any proof that the treatment works. If you feel good, then that is what matters in the end, but for some people (and maybe this includes you, I don't really know), these treatments are a major financial sacrifice. Anecdotal evidence just isn't good enough. If treatments are as great as the clinic websites say they are, then where is the proof?

[LindaZ]

JC, where did you go in Nevada for this treatment? Is it the same as that done in Mexico?

[JC the Fox]

I had both my treatments done at the Royal Medical Group in Las Vegas.

[barbara]

LindaZ - There are many different kinds of stem cell treatments. Stem cells can be harvested from fat, peripheral blood, marrow, placenta, menstrual blood, skin, teeth, umbilical cords, amniotic fluid, aborted fetuses, embryos, just to name a few. Many clinics add things to the stem cells as well. Clinics in Mexico, the U.S. or anywhere in the world are not just using one type of stem cell or one method of preparing the stem cells. Extraction and infusion methods may also vary.

At this early stage of research and development, there is no "one" method or type of stem cell that I am aware of that has been proven to work better than any other method for diseases in general or for specific diseases. The jury is still out and will be until years worth of valid research can be accomplished. People getting stem cell treatment now truly are the Pioneers.

[JC the Fox]

I was hoping to post the results of my PFT's today; however, upon arriving at the local VA clinic, I learned that full tests can not be done there - particularly, they can not do the diffusion tests. Plus, there is no enclosed box, just a hand-held unit and a laptop.

In addition, the VA computer system linking the local clinic to the main hospital was down, so information could not be sent back and forth. After trying to do the "plain" FEV1 tests (which showed a "cough" error on two occasions), we stopped the testing. The technician will get with me tomorrow to reschedule the full tests at the VA hospital in Cincinnati; and I'll let everyone know when that will occur. Since all my previous testing was done there, it is probably best to have the next one done in as similar a fashion as possible.

[Connie]

JC the Fox, I was so looking forward to hearing your results today. I'm sure you were too and I know it must be frustrating having to wait and go back. Have you noticed any improvements since your most recent treatment? i know it has not been long but we ( or at least I ) can't wait to hear about any improvements you might have had.

[JC the Fox]

My new appointment for complete pulmonary testing (including the diffusion) is October 19th. Hopefully, the additional time will allow my second therapy to have more effect.

In any event, I'm quite fortunate in that both my parents, who are in their 80's, are still around. Unfortunately, my mother fell Wednesday evening and broke her hip and femur - her surgery is this evening. And my father had an arterial stent inserted just a few weeks ago. So, I'll be quite busy seeing to them for the next few weeks.

Thanks to all who emailed me...

[purplerain]

JC I wish you the best on the result's on your test's
and for your Mother and Father to get well soon

[Jeannine]

JC

Sorry to hear about your parents. I hope your Mom will make a quick recovery. I am anxious to hear about your PFTs too.

[Connie]

JC,
I am so sorry to hear about your parents. You take it easy and don't forget while you're taking care of everyone else to take care of yourself too. Believe me, I know that is not alway an easy thing to do. My family will keep you and yours in our prayers. I look forward to hearing great news from your PFT's in October.

[Gail]

J.C.....I am so sorry to hear about your mom...I know this is a very difficult time for you BUT, as Connie said, you must not forget to take care of yourself...you and your parents are in my prayers..
I am looking forward to your PFTs......mine are scheduled for October 11....

[barbara]

You are fortunate to still have them both. I am sure you will help get them through this difficult time. Keep us posted when you have time. Here's to a speedy recovery for both of them.

[JC the Fox]

I had the PFT's performed at the VA hospital this morning; my prior testing was done in January, before I had my first therapy. My FEV1 had not changed (26), and my diffusion increased from 37 to 38%.

[Connie]

YEE-HA That sounds like wonderful news to me. No decline in 10 months is great and ANY improvement in diffusion is FANTASTIC!!! Thanks so much for posting this. I look forward to hearing any more results you have in the future.

[barbara]

To me, this news is not encouraging as far as stem cell therapy being able to regenerate the lungs. Dr. Young told me he felt that COPD could be cured in 4 treatments. That is one reason I was energized about his research. Now, I know that this was not based on anything but a theory, but for someone who is seriously ill, it certainly sounded very promising. I can't believe how far fetched it now sounds to me, but at the time, he was convincing.

While having no decline is good news, a person can achieve this most likely with a good exercise program and even certain medications. Several studies have proven this.

It's time to get serious about the claims that are being made by BioRegenesis and some other companies. JC did the PFTs on his own. I would suggest to anyone who wants to gamble their money on treatment to do the same. With the exception of a very few clinics, the interest is not in the efficacy of the treatment. Otherwise, testing would be required before and after. The proof that the treatment is doing any more than keeping inflammation down is simply not there in my opinion. I have a strong feeling that many in the scientific community would share my opinion.

Those of us who have COPD are aware that adhering to a good exercise program (like JC does) is one of the best ways to stay healthy and keep the disease from progressing. Walking and exercising are free. Stem cell treatments cost thousands of dollars and in some cases lives. There is zero proof that this particular treatment can regenerate or repair the lungs.

The latest word is that BioRegenesis or Heygen or whatever name this company is using (there were a couple of names prior to these as well) is telling patients that they are planning on having a program where people will live in Las Vegas for a month or two getting several treatments a week, being blasted with trillions of stem cells. Of course, this will cost considerably more than the treatment they currently give. Where is there any type of indication that this would be safe or work? It sounds like a high priced experiment to me with the patient taking all the risks. I certainly would not want to be the first to sign up for something like that. If a person wants to give money away, there are a lot of worthwhile charities out there and for profit clinics giving experimental treatments outside an IRB aren't on the list.

As always, it is Buyer Beware. I thank JC for posting and taking it upon himself to have PFT testing done before and after and letting us know that he does maintain a regular exercise program.

[Jeannine]

JC

I imagine you are somewhat disappointed with the test results. THe fact that your lung function remainsunchanged is good news, but lung function doesn't deteriorate that fast so having the same FEV1 after two treatments I would expect more for the money being spent.

[danny]

JC - Thanks for the update, I was hoping you would have shown an increase in FEV1, considering how much better you were feeling (walking and stuff). I think everyone that has stem cell therapy needs to know the placebo effect can be very strong (even when getting a real stem cell treatment) and your mind can make you feel 10X better. I didn't get a dang thing out of my treatment and don't think stem cells are the cure all with COPD. I started exercising and eating the right foods/nutrients and my body feels much better and have had really no decreased FEV1. Only thing that worked for me is Daxas, eating brocco sprouts and using the lung flute. I think other stuff will have a better change in helping reverse COPD then stem cell therapy..