Have Made the Stem Cell Decision After Years of Research

Bottom line is, I am going to try stem cell therapy. Have spent seven years researching it and all the complex information that goes with it. Also, I've researched so many companies and and how stems cells work for Lyme and autoimmune, the quality of products needed to provide the most safe possible outcome and the methods of how stem cells are derived.

At a point where the only thing left to lose is $$. Money is useless to me living like this. Life is no longer tolerable as it is, and I've tried so many different treatments to get better, which have not helped much in the last 8 years after getting to 85% 8 years ago. While I do not buy into "doing something is better than doing nothing at all," I do believe "doing something you have deeply researched for years is better than doing nothing."

The dietician/nutritionist I see has been an amazing help, and she does so much more than food. She is very educated in Lyme and autoimmune, and she is a very caring person who has not hammered me for money every time we talk or put me on worthless treatments that are costly like so many before her have. Quite the opposite.She referred me to someone she really trusts who has a functional medicine practice with MDs, naturalists, different treatments, etc... The owner has spoken with me twice.So has the doctor. The owner has had Lyme Disease for three years and had stem cell therapy in January.

He did not say it is a miracle cure but did say he feels much better since having stem cells with exsosomes in January. He said it has worked so far, but also said he will see if it continues to work each month. Again, he did not make any ridiculous guarantees and did not push me to do it. I asked for more information about his company and the company that he purchases the stem cells and exsosomes from. I realize the FDA has not approved any stem cell-based products for use, other than cord blood-derived hematopoietic progenitor cells (blood forming stem cells) for certain indications. My daughter's plantar fasciitis was gone in six days after she had a stem cell injection. It took me 11 months once to heal it years ago.

While injecting straight into an area should give the cells a better chance to work, I don't have that luxury and will have to do IV. There is much more, but I've written enough. And yes, I do know it may end up not helping and also have sen the horror stories about them. Then again, I've seen horror stories on Lyme treatment we all know can actually help.

Will let you know what transpires and when. Status quo is no longer sustainable. You have to trust someone at some point. I have found that someone and am at that point.

Yes. I would only do it in the US with a company that works some with FDA and some oversight on product. The company is right here in Atlanta, and the company they buy product from is out of Missouri. I looked at so many companies over the years - with many calls and having to learn about the different type stem cells.

This will be with stem cells from umbilical cord (haematopoietic). It is so complex looking at all the information out there, and based on what I have looked at for years, that is what I want to use and they can produce with quality.

Very kind of you, Garzie. Have played ping pong with this for years now. All I can do is try. Even a 15-20% improvement would make life more livable as I'm concerned about my legs weakening and the breathing.

Anything we try with this crap we all live with comes with assurances. Doing nothing does come with assurances- nothing has any chance of changing. Biggest decision I've ever made with Lyme and autoimmune. Thank you for the backing. And I hope better things for you and everyone on here.

Running wild - I think you’re wise to try this.
I agree about the cost.

When I decided I wanted to go to Dr J for treatment I approached my husband to discuss it. I didn’t know how he’d react… the cost of flying across the continent (flights, hotels and meals plus his appt costs etc. was about $5000 each trip.
Without any thought he said “book the flights”

It was the best decision.
I have my life back.

I really hope this works for you!

Wow! Small world!

I think in the past we've talked here and you've seen the doctor I am currently using. That makes me curious if you are doing these exosomes through Dr. Kalb? That is who told me about Vitti Labs. If so, I am even more curious how exosomes goes for you.

What did the person at Vitti Labs say about the FDA warning?

running wild said...
I didn’t ask about that because I read the actual letter from the FDA to Vitti. It seems like it was more of a technical use of terminology and intended use of umbilical cord stem cells. Wasn’t a warning of an inferior product.

Ironically, it is another provider in Atlanta that I am going through. It’s good to know Dr. Kalb also uses Vitti as I’ve always found him one to be someone whose uses quality products. So good news for both of us, should you decide to try it. I’m doing the combination of stem cells and exsosomes.

That's awesome. Now I am personally extremely curious how the treatment goes for you. Good luck and come back and update us afterwards.

Wishing you all the best, RW! I'm looking forward to hearing how it goes.

running wild:

I know someone who underwent Hematopoietic Stem Cell Transplantation (HSCT) for Multiple Sclerosis, but I'm guessing that's different than what you plan to undergo. Is there a website or document that explains your expected treatment in simple terms for a lay person like me? I'd enjoy learning more.

Like everyone else, I wish you great success!

Dude

All your positive words are appreciated. Nervous about it, yet after researching for about 7 years and how I feel, figure it's now or never.

Dude - I'll explain more in an email response to yours. There are so many different takes on it, things get a bit complicated. The provider of the actual stem cells and exsosomes is important, and I'm comfortable with that. The company that will do the IV infusion of them is one I'm also comfortable with.

The process, WBF, as far as number of times, is simplified by the umbilical cord stem cells. It will be one infusion mixed with the exsosomes. As mentioned, there is no guarantee and no telling about what initial reaction might be, like a short or long herx.

I'm not geting my hopes up nor looking at it negatively. Simply going to let the process play out and pray it "takes." Even if I feel 25% - 30% better, that would put me in a much better place.

I appreciate your words, pinkblossom. I decided to go with the full stem cell therapy with exosomes because of so much happening between autoimmune, Lyme and company, peripheral neuropathy, dysautonomia.

Scheduled to happen next week.

hi running wild, I'm sorry to hear you are feeling worse. Unfortunately I have heard this from many different people who tried stem cells, that it worsened their conditions and symptoms in the long run but I do hope it's only temporary for you. If you want to connect with the people who were worsened by stem cell therapy, they are probably more likely on Facebook groups than on here. I think there used to be some groups for 'infusio' clinic which was shut down. sorry again that it wasn't the desired outcome and you've had a worsening of your symptoms and conditions

Post Edited (pinkblossom) : 9/2/2024 4:56:10 PM (GMT-4)

running wild - has it just been about a week since you had the procedure?
If so… maybe it just takes more time to work?

running wild said...
The one who runs the clinic that did it said it could take a few days to feel any better and even feel worse as the initial reaction is the procedure causes more inflammation. That would loski's herx theory. The same man who runs the clinic has Lyme and was treated in January for it. He said it he felt really bad with migraines, fatigue for about 4 days. I'm on day 4, and things are only getting worse. Also, my legs are feeling weaker and weaker, which he didn't have and I had it even before starting the stem cell treatment.

I don't know. It just seems whatever I have tried has not worked and/or made me feel worse. After so many years of trying most everything you can, just losing faith and getting depressed even more. That's not a good way to be, and I'm trying not to. But my mind is going there because I never thought I'd get to the point of, almost, not functional. From all I've read, it's rare when people have long term, bad reactions to umbilical cord stem cells and exsosomes.

Thanks for your responses.

Hang in there. You probably need more than 4 days. I used to work for a place that did stem cell therapy for other reasons and the results were way down the road. Never in as short as 4 days.