should i pay $90,000 for stem cells?

[Emily L]

trying to decide if i should get stem cells from Infusio in Beverly Hills they also give u an iv with vitamins and treat the thymus what do you guys think? can Iitrust Philip Battiade when he told me he cures 95% of people?

have you heard of this? are stem cells real?

help! my pa and my boyfriend Banny say to do it, i'm not so sure 90,000 is a lot!

 

[A.B.]

No.

 

[Never Give Up]

Nope.

 

[Kati]

No. Not recommended. Save your money and wait for clinical trials. See a doctor that sees ME patients. OMI, Montoya, Peterson. None recommends stem cells treatments, whatever procedure they are selling.

 

[Emily L]

Phil Battiate told me that they will scan my body using a machine to detect viruses but that it's just a guide and not really meant to diagnose anything which sounded confusing. Why do it?

He said stem cells can cure everything except Parkinson's. I asked what about Ebola and he said no

He had very trendy glasses on which made me like him, but also not trust him because what doctor pays that much money to look good

It's one of those cucumber water places...

It all sounds too good to be true but on Facebook people said they got well

 

[Emily L]

Thanks guys you are confirming what my brain is telling me. If he could really cure all these people then wouldn't his name be all over CNN?

 

[SB_1108]

First I want to preface my comment by saying that I am planning to go to Infusio soon. But I am think the statistics you listed for "cure" rates are incorrect. Infusio has said that about 80-85% of Lyme patients improve but there is no mention of ME/CFS patients rates or even a "cure." Also I'm not sure where the $90k price range is from but I know their standard treatment protocol is $25k.

I think it's all about expectations... I don't expect a cure but I'm hoping and praying for just a reduction in symptom severity, if only just one symptom. I'm mostly bedridden now so I think that it's a real gamble.

I am hesitant to tell anyone not to pursue a treatment because what works for one patient may not work for another. I was doing fairly well last year until I started treatment with KDM and got substantially worse. Like the sickest I've ever been since I got ME 8 years ago. I know a lot of people have been helped by KDM - I wasn't one of them! After treatment with KDM failed, I reached out to two other ME doctors and they were not sure they had anything to offer me.

One of the most complicated decisions I had to make was whether or not this money should be spent on research versus this treatment. I know it should be spent on research but my quality of life is so low right now that, like I said, I just need a bit of symptom relief to get me by so I can hold on a bit longer. If your symptoms are more mild, it might be better to put your money towards research. If your symptoms are severe, I understand the urgency to find even minimal improvements.

 

[Snow Leopard]

No, there is no plausible mechanism for this to help, even in autoimmune diseases, or MS etc.

 

[Helen]

FWIW, here is an old article about stem cell treatment and ME/CFS

http://www.prohealth.com/library/showArticle.cfm?libid=14735

 

[SB_1108]

No, there is no plausible mechanism for this to help, even in autoimmune diseases, or MS etc.

Not sure if you subscribe to the whole, autism and ME are similar diseases theory but there was a small study recently completed out of Duke University about stem cells being used as a treatment for autism:
http://onlinelibrary.wiley.com/doi/10.1002/sctm.16-0474/full
More about it here:
https://www.google.com/amp/s/amp.cn...m-cord-blood-stem-cells-duke-study/index.html
The study had some limitations and it was a different type of stem cells than what the clinic Infusio uses, but interesting nonetheless.

 

[David Jackson]

Say to him, "If you cure me, I will pay the $90K. If you improve me by a certain percentage, I will pay that proportion of the $90K. If there is no change in my condition, you get nothing". See what he says to that...

I've thought of it like this: what would you do if you took your car to a mechanic, paid him thousands, and, at the end of the day, the problem with your car is still there? You'd go and ask for your money back. If you didn't get it back, you'd take him to court and get it back that way. Why should it be any different for these very expensive doctors and health practitioners?

 

[SB_1108]

Someone just sent me this study on stem cells for Dysautonomia: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5346911/

It was just a case study of two people but...

"The favorable clinical response in these two young patients warrants further clinical trials using either autologous or allogeneic MSCs for autoimmune diseases could be designed for randomized, double-blind, single-dose versus multiple-dose infusions, while evaluating patient outcomes at a time course up to 24 months and even longer to evaluate the role of MSC therapy on autonomic nervous system and immune dysfunctions, which may be actually interrelated."

 

[Snow Leopard]

Not sure if you subscribe to the whole, autism and ME are similar diseases theory but there was a small study recently completed out of Duke University about stem cells being used as a treatment for autism:
http://onlinelibrary.wiley.com/doi/10.1002/sctm.16-0474/full
More about it here:
https://www.google.com/amp/s/amp.cn...m-cord-blood-stem-cells-duke-study/index.html
The study had some limitations and it was a different type of stem cells than what the clinic Infusio uses, but interesting nonetheless.

Two very different diseases and well, that pilot study is (as yet) unconvincing too.

 

[MeSci]

trying to decide if i should get stem cells from Infusio in Beverly Hills they also give u an iv with vitamins and treat the thymus what do you guys think? can Iitrust Philip Battiade when he told me he cures 95% of people?

have you heard of this? are stem cells real?

help! my pa and my boyfriend Banny say to do it, i'm not so sure 90,000 is a lot!

He cures 95% of people? With ME/CFS? How come I haven't heard of him then? I've been ill since 1995.

No.

 

[David Jackson]

Don't we make our own stem cells in the marrow of our thigh bones? I have heard we also make them in the navel as well. Why do we need an infusion of them? (This is a genuine question).

 

[SB_1108]

Don't we make our own stem cells in the marrow of our thigh bones? I have heard we also make them in the navel as well. Why do we need an infusion of them? (This is a genuine question).

I do not know a lot about the science of stem cells but this from the Infusio clinic's FAQ:

"Instead of using pure stem cells, our Integrative Cell Therapy programs utilize stromal vascular fraction (SVF). This is an extract, derived from fat tissue, which contains stem cells as well as a whole array of other important cells, exosomes and growth factors.

Stromal vascular fraction is a very complex substance. In fact, science has not yet identified all components found in SVF. What we do know is that the growth factors contained in SVF can turn off an inflammatory response. They can also cause cells to multiply and the can call in specialized cells to perform specific functions.

Studies indicate that stromal vascular fraction does much more than simply repair. It's application triggers asystemic response, activating the body's ability to regulate cell function and promote healing. Stromal vascular fraction and it's use in cell therapy is very well researched and is safe to use."

Again if we consider the recent research suggesting we are in "cell danger response" (Naviaux), regulating cell function may be somewhat beneficial in the management of our disease. Assuming that it works...

 

[MEPatient345]

I am a member of the infusio FB page where people discuss treatment, and I have been trying to understand infusios approach and read related stem cell research, but with brainfog it's hard to understand exactly the science behind it, and which research is really applicable to the exact type of treatments offered by infusio.

There are a whole lot of red flags that make me doubt it is real, but then there are a lot of people saying they are improved. I understand your decision to go there @SB_1108, and am interested to hear how you get on.

The red flags that I see are their salesy approach with lots of unproven/shady diagnostics (global diagnostic scan, anyone?) and holistic pre-stem cell treatments. The fact that Battiade is not a medical doctor. The lack of actual studies, lack of clarity around the success rate apart from "Phil says...". The whole cultishness of "only positive thinking!" seems really sketchy to me, and the general hippy vibe on the FB page.. people treat Batttiade like a cult leader on there. The fact that he says patients emotional identification of being a sick person stops them from getting better (paraphrasing) worries me.

But.. if in a year or more, a few of us have gone through the treatment and it works, I'd probably consider also, so @SB_1108, good luck and wishing you all the best with it. It could be that it is just not fully understood yet, about how it works, but that it actually does work.

 

[adreno]

No.

 

[Basilico]

He cures 95% of people? With ME/CFS? How come I haven't heard of him then? I've been ill since 1995.

No.

After many thousands of dollars spent on doctors all promising cures, I have learned than any time a doctor or any kind of health practitioner claims that they have successfully cured a high percentage of people with CFS is a HUGE RED FLAG.

Think of it this way: if any doctor had a 95% or 50% or hell, even a 10% success rate, their name would be all over PR and you would know about it.

About a year ago I went to a CFS 'specialist' who told me he had a 98% success rate curing CFS because he cured himself. Warning bells went off in my head as soon as I heard that, but I thought I would give him a try since I wanted to exhaust all possible treatment options. His 'cure' was Valtrex and some herbal supplements. Didn't work for me, didn't work for anybody on this forum (besides a minor or temporary improvement) and after months of the treatment obviously going nowhere, he admitted this was the only trick in his bag. I've spoken to others on this forum who went to that same doctor and had a similarly disappointing experience. He was very happy to take our money, though.

 

[Undisclosed]

Phil Battiate told me that they will scan my body using a machine to detect viruses but that it's just a guide and not really meant to diagnose anything which sounded confusing. Why do it?

He said stem cells can cure everything except Parkinson's. I asked what about Ebola and he said no

He had very trendy glasses on which made me like him, but also not trust him because what doctor pays that much money to look good

It's one of those cucumber water places...

It all sounds too good to be true but on Facebook people said they got well

A body scan will not detect viruses.

Stem cells do not cure everything except Parkinson's.

Probably has the trendy expensive glasses from ripping people off with his lies.