Stem cells infusion : I am looking to get... - Cure Parkinson's

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Stem cells infusion

Prakash1 profile image
43 Replies

I am looking to get stem cell at Hope Bioscience in Texas. They have recommended infusion through IV and partly through Intrathecal. I am a bit nervous about getting it through intrathecal but wanted to see if anyone has had any experience with it and how effective it was and what are the associated risks.

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Prakash1 profile image
Prakash1
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43 Replies
marnegro profile image
marnegro

Hi, I'm just curious about this procedure are you planning to do at Hope Biosciences. It's part of a clinical trial or it's a private treatment are you going to pay them to do? I understand the last clinical trial was recently fully recruited. Thanks.

Prakash1 profile image
Prakash1 in reply tomarnegro

no I am not a part of the clinical trial and am paying for the treatment

Router_ profile image
Router_ in reply toPrakash1

what’s the cost ? I think having the intrathecal option is actually great, see ongoing study in MSA that is purely intrathecal

Prakash1 profile image
Prakash1 in reply toRouter_

It’s recommended that I get 5 sessions of infusions for 400 million cells ( 300 infused through IV and 100 intrathecal ) and is expected to cost about $8000 per session. Add to that there’s $4000 to culture and bank the cells.

Router_ profile image
Router_ in reply toPrakash1

Seems ok, by culture meaning it’s autologous stem cell, are they using abdominal fat cells ?

Prakash1 profile image
Prakash1 in reply toRouter_

Yes I got a fat extraction from my abdomen

Bluebell2022 profile image
Bluebell2022 in reply toPrakash1

Can anyone get this treatment done? I don’t live in USA

Prakash1 profile image
Prakash1 in reply toBluebell2022

I believe that they offer a similar treatment in Japan

PixelPaul profile image
PixelPaul in reply toPrakash1

To me that seems like a lot of money for a procedure with no studies to back up its effectiveness. Good luck if you decide to have it done.

Prakash1 profile image
Prakash1 in reply toPixelPaul

Thank you

Thyroidmom2016 profile image
Thyroidmom2016 in reply toPrakash1

pubmed.ncbi.nlm.nih.gov/378...

Thyroidmom2016 profile image
Thyroidmom2016 in reply toPixelPaul

pubmed.ncbi.nlm.nih.gov/378...

Farooqji profile image
Farooqji

Go for it. I wish I could have the opportunity, I wouldn't think for a second

park_bear profile image
park_bear

Is there any evidence that there's any efficacy to this treatment for Parkinson's?

By evidence, I mean a study published in a peer reviewed journal, not testimonials.

There's evidence for this treatment: healthunlocked.com/cure-par...

Router_ profile image
Router_ in reply topark_bear

youtube.com/watch?v=s4g3kFl...

There is very strong evidence for MSA - if this is translatable to Parkinsons might be another discussion.

curlscurls profile image
curlscurls in reply toRouter_

Are there results from the MSA study yet?

Router_ profile image
Router_ in reply tocurlscurls

No, just the interim results from the Phase 1. The Phase 2 is currentyl ongoing and still recruiting. The phase 1 results I would consider mind-blowingly good though for MSA. The fact that they effectively had halted progression in such a fast progressing disease in pretty much all patients is just such a good result

curlscurls profile image
curlscurls in reply toRouter_

Thanks!

Prakash1 profile image
Prakash1 in reply topark_bear

Thanks

NurturalApp profile image
NurturalApp

I don't have personal experience of stem cell infusions but am aware of potential pros and cons. I believe it can be a game changer for some. Have you considered elevating the activity of your own stem cells? A client of mine is wearing phototherapy patches that increase stem cell activity (rather than introducing externally cultured ones). She was diagnosed with Parkinson's, but it turned out to be due to heavy metal toxicity and a genetic predisposition to poor detoxification via glutathione. She's doing really well and feels it's partly down to the patches, which are increasing stem cells and glutathione, among other things. She is also supplementing with a number of nutrients too. The cost is a factor. The patches are $100-$250 per month. Stem cell infusions are $8-10k per session.

asparagu profile image
asparagu in reply toNurturalApp

NurturalApp, could you please share where your client has gotten the Phototherapy patches please ? I too have had heavy metal toxicity as a younger adult and diagnosed at age 50 with YOPD Parkinson's and would appreciate any info, on the phototherapy treatment modality. Thank you

Prakash1 profile image
Prakash1 in reply toNurturalApp

Never knew that something like that existed. Where can I find the patches

amykp profile image
amykp in reply toPrakash1

I'm not convinced about them, but my daughter sells them. If you pm me, I'll give you her info.

park_bear profile image
park_bear in reply toPrakash1

Phototherapy is use of light to treat health conditions. Ask yourself - how can a skin patch emit light? Especially when the vendor does not show any images of it emitting light.

ParkeysSon profile image
ParkeysSon in reply toNurturalApp

Here is a link to the photo therapy patches lifewave.com/X39StemCellPho...

Practiced profile image
Practiced

Intrathecal injection is usually a simple low risk procedure. I am sure they will give a list of the risks. I think the risk of intrathecal admin are minimal in comparison to the stem cells which are a relative unknown (Sorry if I made you swap one worry to another). My wife had to have a LP (same as intrathecal but taking fluid out instead of putting something in). The ED Dr and a radiology trainee f'd around for about 4 hours till we spat the dummy. We then got an anesthetist used to spinal injections - first go hit the spot. Later in her admission another junior Dr had a go and couldn't get the spot. Another anesthetist took over, again in first go. So get someone who has done 100 plus spinal injections.

And thanks for reporting your experience.

Prakash1 profile image
Prakash1 in reply toPracticed

Thanks so much. I appreciate the advice!

muraterturk profile image
muraterturk

Hi Prakash,

Are you told what type of stem cells (i.e. UC -or AD-derived MSCs, or SVF etc) will be given?

Prakash1 profile image
Prakash1 in reply tomuraterturk

I think it’s MSc

Baron1 profile image
Baron1

Good Morning,

Brilliant, go for it.

If you can just ask them the size of the stem cells they will be re-administering into you.

The smaller they are, the better chance you will have of them migrating to the brain and throughout the body to vital organs. The larger they are the more likely they will get trapped on their journey around the body and will have no benefits at all.

Best wishes and stay positive, this type of investment into getting you well is imperative, as nothing else at this stage comes close.

Good Luck

Prakash1 profile image
Prakash1 in reply toBaron1

Thank you so much, they did mention that the stem cells infused through IV , only 15-20% make it through the Blood Brain Barrier and the stem cells that are infused Intrathecally 100% makes it through the BBB, which brought me to the next question as to why not just infuse all the cells via the intrathecal route. They said that it could cause the Cauda Equina syndrome which has freaked me out and which is why I posted this on this forum

kaypeeoh profile image
kaypeeoh

Traditionally stem cells were extracted from bone marrow. But then it was found that subcutaneous fat has thousands more stem cells than equal volumes of bone marrow.

Squarepushr profile image
Squarepushr

Here is a study Hope can do: C13 radiolabel stem cells and follow where they migrate after hours, days, weeks, months. Then they will know (and we will all know) where these stem cells end up. My guess is they are taken up by fast dividing cells - epithelial and skin cells, and tumors if any are around.

If I were you I would definitely want to make sure you are cancer-free before starting

I am not a doctor and this is not medical advice; make sure to discuss your plans with a doctor

Sandmanliz profile image
Sandmanliz

I am an anesthetist and have rescued many Emergency and Surgical docs who struggled with intrathecal injections. I have done over 3000 (as these are epidural/spinal techniqes we do daily). You might want to request someone from the anesthesia department to actually inject it. All cerebral spinal fluid slowly flows north explaining how it gets to your brain. I am not aware if the IV doses cross the efficient blood brain barrier. One of you smart PhD boys can answer that one!

Prakash1 profile image
Prakash1 in reply toSandmanliz

This is very good information and I thank you for sharing it

Squarepushr profile image
Squarepushr in reply toSandmanliz

My guess is that if you inject the cells at L4 you will be lucky if any of them migrate past L3 in a month. I've talked to people doing research in spinal cord regeneration and they can't get these cells to go anywhere. again c13 labeled cells will tell you exactly where they end up

Baron1 profile image
Baron1

Good Morning Again,

I understand your concerns, so if you want to read more about Stem Cells and you have time, please read the links that I will attach below.

I have more but these are a good starting point and will give you more information that may assist you.

onlinelibrary.wiley.com/doi...

mdpi.com/2073-4409/10/8/1992

Best Wishes

Boscoejean profile image
Boscoejean

when are you going to have the intrathecal administration of the stem cells and when will you have the infusions?

Prakash1 profile image
Prakash1 in reply toBoscoejean

Over the course of two days

Boscoejean profile image
Boscoejean in reply toPrakash1

have you already had it or is it in the future?

Prakash1 profile image
Prakash1 in reply toBoscoejean

I’m scheduled for next month

Ctime profile image
Ctime

There is a presentation a week from today (Monday) by the International Society for Stem Cell Research called "Stem Cells and Parkinson’s Disease: Research Advances + Patient Experiences"

Cant vouch for the organization. The description and link are below.

Program Description: Co-organized by the ISSCR and the WPC, this open access webinar will provide a high-level outlook of current cell therapy research and clinical applications for Parkinson’s disease. Presenters will highlight advances in cell therapies, including basic research discoveries and the latest clinical trials. Attendees will hear a first-hand account of the journey to receive a cell therapy from a person living with Parkinson’s disease. The program is geared to people with Parkinson’s disease and their caregivers who will learn the progress toward novel cell therapy development and to researchers across the stem cell field who will gain understanding of the newest research advances and enhance their knowledge of patient perspectives. Attendees will have an opportunity to ask questions.

isscr.org/upcoming-programs...

And if you are in the US, this trial case may be important. A federal circuit court determined that Stem Cell therapy is governed by the FDA. My reading on that means higher costs, lower availability, longer delays, but less risk and higher quality products. Maybe even insurance coverage.

isscr.org/isscr-news/ninth-...

Prakash1 profile image
Prakash1 in reply toCtime

Thank you

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