NeuroTalk Support Groups - TBI Therapy - Pluripotent Stem Cells And PRP For TBI

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TBI Therapy - Pluripotent Stem Cells And PRP For TBI

TBI Therapy â€“ Regenerative Therapy for Brain Injury Recovery

Has anyone else seen this? I have spoken to several people who have done this protocol and am planning to do this. One woman told me she was in a car crash and hadn't improved in more than a year. Another improved more modestly, and I am in the process of contacting more people who the clinic said would talk to me. The first two I found on my own.

Dr. Hughes protocol involves many different therapies combined to treat TBI out of his offices in Colorado. They include:

1) Autologous pluripotent stem cells (VSELs) - Very Small Embryonic Like Stem Cells. These are pluripotent stem cells that originate in the bone marrow and circulate in peripheral blood. They behave like embryonic stem cells but are in fact adult stem cells and so can be used. These are not mesenchymal stem cells. The company that makes the technology to isolate them is Tithon Biotech.

2) Platelet rich plasma (PRP) - Concentrated growth factors and cytokines from the blood which can help repair tissue. This is combined with insulin and infused into the cerebral spinal fluid around the brain through the roof of the nose. This doctor is the only person in the U.S. using PRP to treat TBI.

3) IV NAD+

4) Hyperbaric Oxygen Therapy (HBOT) - This releases more stem cells into your blood from your bone marrow so that they can be collected.

5) Supplements, nutrition, etc.

Wondering what everyone's opinion on this is. Dr. Hughes told me that he has treated around 400 people with this protocol in the past several years. He has been willing to chat with me for several hours overall on the phone for free which I think is rare.

I realize that this combination therapy is not at all FDA approved. But I am going on 18 months with PCS and I am ready to try this, especially given that it is all my own cells and growth factors and not from another source. I have done 130 mHBOT dives so far now, and after improving somewhat I am feeling ready for the next step.

I would be extremely cautious about this.

A warning sign is the large number of testimonials on the site. There is no independent medical confirmation of any of them. For all anybody knows they could just be advertising material composed by the owner of the clinic.

The information here may help you to make an informed choice about the clinic:

Nine Things to Know About Stem Cell Treatments

Quote:

Originally Posted by kiwi33 (Post 1266620)

I have actually seen that list of 9 already. I doubt the physician is outright making it up. You could flat out lose your license or more for something like that. His regular practice is sports medicine where he is using the same cells+prp.

Integrative Medicine in Colorado | Aspen Integrative Medicine

You may also notice that many of the testimonials are more modest. One, presumably for a severe TBI patient, talks about how he learned to use a straw after the treatment to feed himself. Not exactly promising the moon. I would also say that he has said that the treatment will take several months for you to see the full benefits. So the other treatments you are doing around that time are unlikely to account for the improvements people are making. The only other thing that might is HBOT because you are doing it long term.

Indeed as they warn he is using testimonials to back up what he's claiming. But like I said, I found several people who went through his protocol outside of those he recommended I talk to in my HBOT support group. One woman was helped a lot and was able to begin working again, the other one modestly. In both cases it took several months to receive the full benefits.

The whole protocol seems well thought out. HBOT is mobilizing stem cells into the blood which can be collected in a minimally invasive way. The whole idea is that you are harvesting as many of the right type of cell as possible. HBOT is also changing the expression of thousands of genes and oxygenating the brain which is therapeutic in and of itself. There is much evidence now for the efficacy of HBOT including the fact that I have already benefited from it.

I’ve done 16 HBOT sessions. Definitely noticed improvement so far but quite a ways from where I’d like to be. Obviously I can’t expect to be my normal self so have to be happy with the positive changes.

Did you notice much difference after 20 sessions and then 40? All the studies say at least 40.

Quote:

Originally Posted by todayistomorrow (Post 1266632)

I noticed real changes at 30-40 dives.

This Australian approach to clinics which sell stem cell treatments may be of interest. The TGA is similar to the FDA.

Stem cell treatments and regulation - a quick guide for consumers | Therapeutic Goods Administration (TGA)

Curious about results

SilenceIsSacred,
Please let us know if you go through with it and what results you do or don't get! Optimally, I'd be interested to hear from you 3-6 months after treatment.

Also, is your experience with HBOT detailed in another post? I'm curious if you gained much from it after 40 dives. I'm also curious if you used 1.5 ATA and 100% oxygen. Was a hood used, or was the chamber filled with O2? I don't want to change the topic of this thread, so please let me know if you've detailed your HBOT treatment and results elsewhere!

Thanks! -Dan

Quote:

Originally Posted by AeroDan (Post 1266642)

I have done 130+ 60 minute dives, 1.3 ATA, with O2 through a mask @ 8 Lpm. I have had some improvements, especially in the area of sleep. I mostly sleep normally now and don't have to take anything most of the time. My mood has also improved, as have my memory and concentration to some degree, but only modestly. I deeply regret not finding out about it sooner because had I begun shortly after my injury I could have restored more function.

Just got back in from doing the procedure. I have a bit of a headache but am otherwise feeling alright. He told me to start looking for results at 3.5-4 months, although some people experience them sooner. I can answer questions if you have them.

Quote:

Originally Posted by SilenceIsSacred (Post 1267685)

Hello. Don't know if you're still active here or not but I am 7 years post TBI. Am in urgent need of getting HBOT. Have contacted Paul Harch in New Orleans and am getting over there as soon as possible. I am curious as to how in the hell you afforded 130 dives? My insurance or any does not cover HBOT for post tbi syndrome. I am ** struggling exponentially. Any information that you have would be of great benefit.

Silence is sacred?

Does anyone know if SilenceisSacred is still active **? Any way to reach him? I am desperate to find out how his HBOT and other stuff he tried went. I'm 5 years with PCS and am desperate. **

SIS has not posted since 9/21/18.

His last comment about HBOT stated he saw improvements but have a way to go still after 130 dives. He commented how the research indicates that it works best close to the time of injury.

braindamage,

You have not posted anything about the struggles you are having. It is best to target treatment to symptoms. There are no global treatments.

How interesting that I was coming here to post an update in this thread anyway.

Quote:

Originally Posted by braindamage (Post 1271700)

Hello! Yes I am still here. I have a soft home chamber and oxygen concentrator that I own so I can do as many dives as I want. You're looking at in investment of ~$6k if you were to get my setup.

Quote:

Originally Posted by braindamage (Post 1271740)

Does anyone know if SilenceisSacred is still active **? Any way to reach him? I am desperate to find out how his HBOT and other stuff he tried went. I'm 5 years with PCS and am desperate. **

The benefits from HBOT basically plateaued at some point. I do not think I am experiencing additional benefit from the HBOT alone.

As far as the stem cells go, I have definitely started to notice some improvements, as well as some unexpected and undesired effects. The improvements began to become noticeable a little after the 3 month mark.

Benefits so far:

Further improvement in ability to sleep deeply and for a full 8 hours. Drinking caffeine day after day, rather than eventually messing up my sleep, seems to actually improve my sleep, provided I've had it early in the day. It is as though the increase in adenosine receptor density is doing what it would be expected to do back when I was healthy. More receptors due to caffeine tolerance enhance the sleep mechanism in the brain once the caffeine molecules have largely been displaced from the receptor sites.

My mood is generally improved. I ruminate less about all sorts of things. PTSD symptoms (pre-brain injury) seem to have been reduced quite a lot as well. I seem to feel more optimistic in general. I have many fewer flashbacks and little to no desire to self harm anymore. I often feel like I have a broader view of life in a more general way.

I feel less apathy, and more of an inner drive. Apathy is one aspect of a brain injury that other people don't get. They think you can just do things if you choose to, but it's not that simple. Sometimes you don't have the brain power to produce the will to get things done. Sometimes you do. There is noticeably less of that now.

I feel like I can think more clearly, critically, and that my inner voice is more articulate, and my analytical abilities are better. I'd compare it to sharpening a knife.

I feel more playful and creative, the way I was before.

I am able to exercise at an even higher intensity and frequency than before, and am starting to look much more slim, toned, and healthy physically.

I am tolerating caffeine MUCH better overall now! I am able to consume larger amounts, more days in a row, with greatly reduced physical and mental side effects.

Things I wish had improved more:

Working memory and concentration are still not that much better than before, although I do notice some modest improvement.

The feeling of "fogginess" has still not lifted.

I still have difficulty processing text at the speed I used to, as well as other associated problems.

Things that have unexpectedly gotten worse:

1) Shortly after the treatment, I began to notice that I was more sensitive to caffeine headaches during withdrawal. They can get pretty nasty if I don't taper down my consumption gradually. This is normal for many people, but I never used to experience this. In any case, this is almost certainly due to the increase in adenosine receptor density, as adenosine controls both the sleep-wake cycle as well as blood vessel dilation. But for some reason, as with better sleep, I am experiencing "better" vasodilation, and hence headaches during withdrawal. I have not tried to manage the headaches with ibuprofen or something similar yet.

2)The most significant problem though is that I am MUCH more sensitive to blood sugar fluctuations than I used to be. If I consume a sugary desert or way too many carbs at once I have trouble speaking correctly, and have difficulty forming sentences, pronouncing words, and find it difficult to tell if I am speaking correctly or not. I have particular difficulty with using the past tense. Another aspect of this problem is that my internal voice becomes unclear and inarticulate, almost as though you can not think thoughts in words as well. It is hard to explain, but that is how it is.

But if I control my blood sugar by eating more fats and fiber and fewer carbs and little or no sugar, this effect does not occur at all. Drugs do not seem to affect this problem at all, so it is definitely blood-sugar related.

I would note that I experienced these sorts of symptoms early on after my injury, but that they completely went away early on. My fMRI from Cognitive FX showed very little abnormality in my language processing areas. So it is strange to have this problem popping up again, especially given the fact that I consumed an enormous amount of sugar during the first several months just to cope without it causing many bad effects at all. In fact, the side effects from drinking a lot of soda were decidedly mild compared to how that sort of thing would usually affect me.

Although this effect has unnerved me and has made me feel pessimistic, it is possible that the cells are not fully mature yet and that several months from now this problem will have faded away. Another person I have been speaking with is more than a year out from treatment and reported her tolerance for sugar had improved over what it was in the past.

To sum up, I think the platelet rich plasma had a more immediate effect, where I felt somewhat better and more motivated, but the stem cells definitely had an effect around the time I was told to expect. I have taken a break from doing HBOT for the most part right now.

Hope that info helps. I'll update you guys over the next several months at some point.

Protocol did you do the one or three day package with dr hughes.

Quote:

Originally Posted by SilenceIsSacred (Post 1271909)

How interesting that I was coming here to post an update in this thread anyway.

Hello! Yes I am still here. I have a soft home chamber and oxygen concentrator that I own so I can do as many dives as I want. You're looking at in investment of ~$6k if you were to get my setup.

The benefits from HBOT basically plateaued at some point. I do not think I am experiencing additional benefit from the HBOT alone.

As far as the stem cells go, I have definitely started to notice some improvements, as well as some unexpected and undesired effects. The improvements began to become noticeable a little after the 3 month mark.

Benefits so far:

Further improvement in ability to sleep deeply and for a full 8 hours. Drinking caffeine day after day, rather than eventually messing up my sleep, seems to actually improve my sleep, provided I've had it early in the day. It is as though the increase in adenosine receptor density is doing what it would be expected to do back when I was healthy. More receptors due to caffeine tolerance enhance the sleep mechanism in the brain once the caffeine molecules have largely been displaced from the receptor sites.

My mood is generally improved. I ruminate less about all sorts of things. PTSD symptoms (pre-brain injury) seem to have been reduced quite a lot as well. I seem to feel more optimistic in general. I have many fewer flashbacks and little to no desire to self harm anymore. I often feel like I have a broader view of life in a more general way.

I feel less apathy, and more of an inner drive. Apathy is one aspect of a brain injury that other people don't get. They think you can just do things if you choose to, but it's not that simple. Sometimes you don't have the brain power to produce the will to get things done. Sometimes you do. There is noticeably less of that now.

I feel like I can think more clearly, critically, and that my inner voice is more articulate, and my analytical abilities are better. I'd compare it to sharpening a knife.

I feel more playful and creative, the way I was before.

I am able to exercise at an even higher intensity and frequency than before, and am starting to look much more slim, toned, and healthy physically.

I am tolerating caffeine MUCH better overall now! I am able to consume larger amounts, more days in a row, with greatly reduced physical and mental side effects.

Things I wish had improved more:

Working memory and concentration are still not that much better than before, although I do notice some modest improvement.

The feeling of "fogginess" has still not lifted.

I still have difficulty processing text at the speed I used to, as well as other associated problems.

Things that have unexpectedly gotten worse:

1) Shortly after the treatment, I began to notice that I was more sensitive to caffeine headaches during withdrawal. They can get pretty nasty if I don't taper down my consumption gradually. This is normal for many people, but I never used to experience this. In any case, this is almost certainly due to the increase in adenosine receptor density, as adenosine controls both the sleep-wake cycle as well as blood vessel dilation. But for some reason, as with better sleep, I am experiencing "better" vasodilation, and hence headaches during withdrawal. I have not tried to manage the headaches with ibuprofen or something similar yet.

2)The most significant problem though is that I am MUCH more sensitive to blood sugar fluctuations than I used to be. If I consume a sugary desert or way too many carbs at once I have trouble speaking correctly, and have difficulty forming sentences, pronouncing words, and find it difficult to tell if I am speaking correctly or not. I have particular difficulty with using the past tense. Another aspect of this problem is that my internal voice becomes unclear and inarticulate, almost as though you can not think thoughts in words as well. It is hard to explain, but that is how it is.

But if I control my blood sugar by eating more fats and fiber and fewer carbs and little or no sugar, this effect does not occur at all. Drugs do not seem to affect this problem at all, so it is definitely blood-sugar related.

I would note that I experienced these sorts of symptoms early on after my injury, but that they completely went away early on. My fMRI from Cognitive FX showed very little abnormality in my language processing areas. So it is strange to have this problem popping up again, especially given the fact that I consumed an enormous amount of sugar during the first several months just to cope without it causing many bad effects at all. In fact, the side effects from drinking a lot of soda were decidedly mild compared to how that sort of thing would usually affect me.

Although this effect has unnerved me and has made me feel pessimistic, it is possible that the cells are not fully mature yet and that several months from now this problem will have faded away. Another person I have been speaking with is more than a year out from treatment and reported her tolerance for sugar had improved over what it was in the past.

To sum up, I think the platelet rich plasma had a more immediate effect, where I felt somewhat better and more motivated, but the stem cells definitely had an effect around the time I was told to expect. I have taken a break from doing HBOT for the most part right now.

Hope that info helps. I'll update you guys over the next several months at some point.

Did you do the one or three day protocol with dr hughes.