My Trip to Bangkok: Stem Cell Treatment [Comments]

It’s not official. I got severe CFS/ME in 2020 and the impact that it had on my sensory nervous system got stuck despite remission of original disease. I’m seeing a really great specialist right now, and based on studies he deems this to be severe neuroinflammation which has become trapped in my brain somehow. According to studies this neuroinflammation makes brain-signals overcommunicate / miscommunicate which can dysregulate neurotransmitter function. All I know is that everything overstimulates me and puts my system into overdrive. I can hardly read, talk or even think due to these symptoms. The specialist wants me on LDN, which will take up to 16 weeks to show effect, but I don’t have that kind of time. It’s getting worse rapidly.

 

What was the original disease @danielthor? I'd love to know who the doctor is and to read more on his theory. ME/CFS has been postulated to be an inflammatory disease (of the brain and spinal cord).

 

The original disease was CFS/ME. I became bedridden with it in 2020 and couldn’t move or speak for 6 months. It wrecked my nervous system

The clinic I’m at is called Mehlsen, but they don’t have any papers out. They’re working with other clinicians all around the world.

An attempt to explain the neurological symptoms of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

This is a good study on it. There is also papers from the Center for Enervating NeuroImmune Disease at Cornell University, New York.

 

Do you have ear problems, sound discomfort, ear sensitivity, specific tones that are coming from directly the ear, anything like that? Or is your tinnitus just all over your head and more auditory input can increase it? Can you describe your tinnitus?

BTW, have you thought about DBS surgery? Could that be a solution? I know there are trials going on in your country.

 

DBS in my country? Are you sure? I’m in Denmark. Could you give a link to it please?

I have severe hyperacusis and severe reactive tinnitus with 3 different tones, one being musical / auditary hallucination. It’s horrible, but I’ve gotten used to it somehow. This neuroinflammation, on the other hand...

 

Probably if it wasn't for the neuroinflammation in the first place, your tinnitus wouldn't have started or could have been resolved in time? What do you think?

I thought I saw Denmark mentioned by a member in the DBS surgery thread in Research News. Maybe you go to the thread and read it. I have no other information concerning your country.

 

I can’t say for sure, but I don’t think so. My ear issues came about after noise trauma.

 

Hi Daniel - Any change in your musical tinnitus? I also have an autoimmune condition causing inflammation and recently developed musical tinnitus in addition to my longstanding tinnitus. It is pretty disconcerting right now, so I am interested to hear how you are getting along with it. Thanks!

 

Hi @PebblesForNow. My musical tone is non-existent at the moment and has been for months, even during big spikes.

 

That is great! I am so happy you have seen improvement.

 

If you don't mind me asking, did you have a consistent musical tone or did it change/fluctuate with various musical sounds/music? Any recollection of whether it faded or just resolved spontaneously?

I have a lot of other neurological things going on, so I am having trouble figuring out musical tinnitus/musical hallucinations vs. medicine side effects vs. other neurological issues.

I hope you are improving on some of your other health problems as well. Having both tinnitus and serious chronic physical issues/disease is terrible. I have been living both for over a decade and it is exhausting in every sense of the word.

 

The musical tone changed with every song or piece of audio that I heard. If it was an annoying song I would expose myself to something that I liked so as to make it less intolerable.

I had different tones, and the piercing outdrowned the musical one most of the time. I don’t remember it stopping, but it was gone all of a sudden.

 

Thanks for responding, and glad it went away. I hope the piercing sound has or will quiet for you too. I know that one took a lot of time to begin to lessen for me after my initial onset. But it did eventually, thank goodness.

 

Got the following quote here:



Probably going to go with option one here myself. My tinnitus is severe and the pain hyperacusis is the worst. Might get better normally but it's been getting slowly worse over the years so would be great to heal it a bit before it gets completely insufferable.

 

Has your health insurance done anything to help?

 

I didn't ask them but I highly doubt they would help with it.

 

They could help at least with the initial visit with the doctor.

 

My health insurance did help with going to see my own ENT.

The first meeting with the doctor in StemCells21 is free anyway.

Really not sure if it will help with this noxacusis or not but I have to try it.

 

Godspeed.

 

Of the 3-4 Tinnitus Talk members who had stem cell treatment, did any of them have any sort of improvement with hearing loss?

 

I don't remember any of them having hearing loss in the first place but the original person who went did link to a scientific study of one girl whose hearing loss recovered from stem cells.

Here:
Safety of Autologous Umbilical Cord Blood Therapy for Acquired Sensorineural Hearing Loss in Children

 

Cheers!

Are you still going ahead with the StemCells21 treatment?

 

Yes, I'm just organising a date for when I go now.

 

Would you mind discussing the financing a little? No specific numbers you're not comfortable with. More so the how of the financing. How are you paying for it and is the clinic helping in anyway for it?

 

Is there ANY evidence for stem cells to help tinnitus, either published peer-reviewed studies or significant testimonials? Surely this should be under alternative/snake oil treatments?

 

Look at the paper I linked above.

This thread contains testimonials of 3 people who got significantly better from stem cell treatment.

I found 3 or 4 more people saying stem cells also gave them minor improvements.

Some people had no benefits.

There are different types of stem cells though, different methods of delivery and also the number of them you receive also differs.

There are thousands of papers on stem cells in general that show they help many different ailments. It's real. The issue is getting the stem cells to the right location. Injections around the outside of the ear seem to work best. Some people get benefit from the IV injection too but it takes longer to take effect.

I would recommend reading through this thread for more information.

 

FYI, I have gone through the same process with StemCells21 and been presented with the same options. Prices are marginally negotiable - option 1 can be negotiated down to at least $32.3k (15% off). Good luck, keep us posted.

Just got back from an UC-MSC infusion in Mexico myself (IV only) for ~$2k for 100M cells. No changes yet. Will report back in a month or two if any improvements.

 

I might do what @attheedgeofscience did and get 100M first and if it's helping then go back for 200M. I could probably get a discount with a double dose I'm guessing.

IV effects take a few months to work apparently. Can you link the clinic you went to?

It's so hard to find a good source. Never know if they might be a scam or just not that safe.

Is this the first time you got stem cells? I hope it works for you!

 

You got it done in Mexico? Was it expensive? Could it help hearing and even a shoulder injury?

 

Stem cells didn't help my hearing. I had MS but I was cured with something else.