Who else has had stem cell therapy?

[AlwaysTired]

I had stem cell therapy on the 13th and have been feeling much worse since- terrible brain fog, much more fatigued, especially.

The Doctor said I might feel worse for a while (days or even weeks) but I am beginning to get frustrated and now wonder if I will at least go back to how I felt pre-treatment, which wasn't great but not as bad as this.

I'm also wondering if anyone has seen long term improvements from this?

I resisted getting it for a long time- it was my dad who found out about this for CFS and kept pressing me to do it- but after trying less invasive, cheaper options I was desperate and finally threw in the towel just to shut him up and get him to stop worrying that I'd never recover.

So I hope there are still some people here who have tried it and can advise me. I feel it's too soon to call the doctors office cause they'll probably just say it's normal to feel worse before being better and can't make any guarantees about if it will even be effective

 

[Sushi]

I had stem cell therapy on the 13th and have been feeling much worse since- terrible brain fog, much more fatigued, especially.

Can you tell us the type of stem cell therapy and what the doctor hoped it would do?

 

[AlwaysTired]

Can you tell us the type of stem cell therapy and what the doctor hoped it would do?

It was mesenchymal- they took the cells from my fat. This was done in the US (I wouldn't have been up to traveling outside the country). Administered via IV, intranasally (to get it to the nervous system via olfactory nerve), intramuscularly via various acupuncture points.

Because it's not an FDA approved treatment here they can't make any claims but you do a medical intake form online so they can evaluate whether you're a good candidate for treatment (i.e. that you could benefit from it)

The doctor herself doesn't make any claims but said that it takes 9-12 months to be effective because new tissue has to be generated, and told me about other patients with chronic fatigue she treated and how effective it's been for them (varying degrees, some can work part time from home, while others had a miraculous turn around and live totally full, active lives)

 

[AlwaysTired]

forgot to mention: my main theory at the time is that something is going wrong with my mitochondria/ATP production and I asked her how this would address that and she said that new cells will have healthy mitochondria, and also damaged tissues in general would be replaced with healthy, functioning tissues with healthy functioning cells (in nervous system, liver, etc...) which in theory sounds great but seems too good to be true

 

[Marky90]

Sounds like a load of bollocks to me (stem cell therapy).. Obviously i hope it will be beneficial for you, but there is literally no sound reason to take that for ME at this moment in time. It`s a money maker though..

 

[AlwaysTired]

Sounds like a load of bollocks to me (stem cell therapy).. Obviously i hope it will be beneficial for you, but there is literally no sound reason to take that for ME at this moment in time. It`s a money maker though..

Can you expand upon why you think there's no sound reason for it? I was very much on the fence before, so I'm not necessarily disagreeing, but always looking for research or experiences others have had that I haven't seen

 

[Marky90]

Based on what I've said or other research?

There`s no research.. So based on that.

 

[AlwaysTired]

There`s no research.. So based on that.

Yeah, the grey area allows for hope that it works, and when you're sick and desperate to get better it's not an ideal place to be. My main concern was that it wouldn't do any harm, at least

 

[Jesse2233]

Yeah, the grey area allows for hope that it works, and when you're sick and desperate to get better it's not an ideal place to be. My main concern was that it wouldn't do any harm, at least

FWIW I've seen a few anecdotal chronic Lyme recovery stories from mesenchymal stem cell treatment. So if you believe there are similar or the same systemic problems going on in your illness, those stories may bode well

 

[AlwaysTired]

FWIW I've seen a few anecdotal chronic Lyme recovery stories from mesenchymal stem cell treatment. So if you believe there are similar or the same systemic problems going on in your illness, those stories may bode well

One of my close friends has Lyme and had told me that a lot of people with Lyme have had good results. I've read that for Lyme, mesenchymal stem cells are best, but for CFS cord blood and tissue is most effective. But I am not risking getting more viruses from an unknown donor and they don't offer it in the states, anyway. The clinic I went to obviously thinks mesenchymal is best. Who knows? There's just not enough info out there yet to know anything for sure.

 

[Jesse2233]

Interesting, where did you hear about blood/tissue being better for CFS?

 

[Marky90]

Nobody knows Sorry dont mean to be negative. Ive seen some anecdotes in the lyme community too, but they are anecdotes.. Severely ill are not the best suited to judge response if it isnt obvious

 

[AlwaysTired]

Interesting, where did you hear about blood/tissue being better for CFS?

I can't remember offhand and tried to find via Google. I remember telling my friend who has Lyme when she told me that it helped some Lyme patients so I will ask and see if she remembers. Wish I could find it now...

 

[Jesse2233]

If true, it's interesting bc people with ME have reported temporary ameliorations with blood transfusions and plasmapheresis. And of course Ron Davis believes the causal factor is in the serum

 

[AlwaysTired]

If true, it's interesting bc people with ME have reported temporary ameliorations with blood transfusions and plasmapheresis. And of course Ron Davis believes the causal factor is in the serum

Just watched his update and Q & A videos today. His research seems really promising.

 

[Jesse2233]

Yes indeed, and he should have another update coming soon

 

[ErdemX]

@AlwaysTired

I am also considering stem cell treatment, and in the last two weeks I've read and watched hours of material about it.

The first thing is, probably mesenchymal stem cells don't help the patient with forming new tissues and cells in damaged areas, especially in the nervous system and the brain, when given IV. After the injection to the blood, a great deal of them goes to the lungs (I was surprised to learn this). However, they might help with releasing many chemicals that influence the immune system, mostly with anti-inflammatory and neuro-protective properties, even though they are accumulated far from the nervous system. I recommend you to watch this 1.5 hour video of an Italian professor, who is working on mesenchymal stem cell therapy for auto-immune illnesses, especially MS. We, as CFS patients probably have some molecules in our blood that leads to an auto-immune process (or maybe the molecules are there as a result of an auto-immune process )

However, I think it is very rare that MS patients get helped from this treatment. There are success stories uploaded mostly by the stem cell clinics themselves, but if you dig deep, there are many unsuccessful stories mentioned in the forums. There is another use of stem cells for MS, which is performed after the immune system being wiped out; that has great potential (with great danger), but this is a very different method than just injecting the patient autologous stem cells back. By the way we might be different from MS patients as it is possible that their damage becomes permanent after years, while there is no evidence that our damage is irreversible.

I personally think it is a very tiny chance that you will stay worse than pre-treatment after 6 months or so. Please try to stay optimistic. Also, may I ask you how much the treatment in the US roughly cost, if you don't mind. I e-mailed Infusio Clinic in Frankfurt and they told me that it costs around 23.000 dollars.

 

[AlwaysTired]

Yes indeed, and he should have another update coming soon

Do you know when?

 

[Jesse2233]

Do you know when?

Not sure, his wife Janet mentioned that they're working on one though

 

[AlwaysTired]

@AlwaysTired

I am also considering stem cell treatment, and in the last two weeks I've read and watched hours of material about it.

The first thing is, probably mesenchymal stem cells don't help the patient with forming new tissues and cells in damaged areas, especially in the nervous system and the brain, when given IV. After the injection to the blood, a great deal of them goes to the lungs (I was surprised to learn this). However, they might help with releasing many chemicals that influence the immune system, mostly with anti-inflammatory and neuro-protective properties, even though they are accumulated far from the nervous system. I recommend you to watch this 1.5 hour video of an Italian professor, who is working on mesenchymal stem cell therapy for auto-immune illnesses, especially MS. We, as CFS patients probably have some molecules in our blood that leads to an auto-immune process (or maybe the molecules are there as a result of an auto-immune process )

However, I think it is very rare that MS patients get helped from this treatment. There are success stories uploaded mostly by the stem cell clinics themselves, but if you dig deep, there are many unsuccessful stories mentioned in the forums. There is another use of stem cells for MS, which is performed after the immune system being wiped out; that has great potential (with great danger), but this is a very different method than just injecting the patient autologous stem cells back. By the way we might be different from MS patients as it is possible that their damage becomes permanent after years, while there is no evidence that our damage is irreversible.

I personally think it is a very tiny chance that you will stay worse than pre-treatment after 6 months or so. Please try to stay optimistic. Also, may I ask you how much the treatment in the US roughly cost, if you don't mind. I e-mailed Infusio Clinic in Frankfurt and they told me that it costs around 23.000 dollars.

The intranasal administrations were for nervous system, since the olfactory nerve is there

I have also read about mesenchymal cells just migrating to the lungs when given via IV, but I don't even know what to believe at this point because the information out there is conflicting

Infusio is ridiculously expensive. I paid 7,100. That is a flat fee for anyone getting stem cell treatment where I went.

There does seem to be something happening in the blood, specifically the serum component, in CFS patients. Dr. Davis has found that it is a protein there that is the issue. If you haven't watched his videos I recommend them.

Thanks for the video, I will watch it now.