I went to a class about stem cell therap... - My MSAA Community

My MSAA Community

8,915 members20,600 posts

I went to a class about stem cell therapy last night...

Bygonelines profile image
39 Replies

And I was wondering has anyone here done this? If so, could you please answer a couple of questions for me?

1.Where did you have it done?

2.Has it helped your MS?

3.What was the cost?

4.Would you recommend it?

5.Was it an injection or an infusion?

6.How many stem cells did they tell you they were injecting?

7.If you noticed an improvement, how long did it take?

8.Did insurance pay for any of it?

9.What type of stem cells did they use (From your bone marrow, From your fatty tissue, From umbilical cord and placenta)?

10.Anything else you care to share about it?

Thanks for the help on this. The class was really interesting but I want to get the opinion of others not trying to "sell" me on the therapy.

Jacqui

Written by
Bygonelines profile image
Bygonelines
To view profiles and participate in discussions please or .
39 Replies
erash profile image
erash

Where was the class? Stateside? Was it for MS ?

No clue answers but sounds like you know the questions to ask so must have been a good class

Bygonelines profile image
Bygonelines in reply to erash

This was a class here in Salt Lake City. It was not MS specific. He had 3 MS folks there, 1 with Lupus, 2 with Parkinsons, 1 with lower back problems, 3 with knee problems, 1 with Lyme Disease. He also had 2 MS patients who had the treatment. Both said they would do it again in a heartbeat. He himself has Lyme disease. I actually got interested in because fthe change in his health. Before his stem cell infusion he looked like death warmed over. Now 1 year later he is healthy and active again. He is back to his old self before Lyme Disease.

My functional Doctor has been doing this since 2012. He was very clear that some people do not have as much improvement as they want and that sometimes it takes 2 or 3 treatments. His clinic uses stem cells harvested from umbilical cords and placenta. This is obtained by a company in Utah who collects from women who are having a c-section. It is done in a sterile surgical environment and the umbilical cord and placenta are donated by the mother. They only accept from healthy mothers and babies.

Dr. Dudley also explained the problems with using stem cells from the patients own bone marrow or fat. Things like the lidocaine used for deadening on the fat removal actually inactivates many of the stem cells, they are more traumatic, you get fewer stem cells, there are fewer of the stem cells that are viable and the results are much less effective. With those 2 methods you may get 50,000 - 100,000 stem cells per ml. But with the umbical cord and placenta you get 1,000,000-3,000,000 stem cells. Because of this it is much more effective.

His clinic has had great success helping people put their MS, Lupus, Lyme Disease, Parkinsons, etc into remission.

He was very clear to tell us you still have the disease, it doesn't cure it, but it puts it into remission and provides a large improvement for most people. He was telling us that by 6 months post treatment 85% of his patients have a 75%-80% improvement in function and symptoms. To me that is huge! I could get my life back. But it is expensive. His prices were much better that I expected. With were my health and MS are he figured it would take 2 seperate infusions 6 mo apart to get the improvement I am looking for.

He gives a discount when you attend his class. My 1st infusion would be $5,000 and the second one would be $3,000. It actualy sounds pretty reasonable to me. Just way more money than I have at this time.

erash profile image
erash in reply to Bygonelines

Not covered by insurance I assume Bygonelines

Someone in this forum reported about the + benefits they received from stem cells I believe admin in Mexico.

I had read a credible article about a woman in Israel, a marathon runner with MS, who was able to resume marathon racing after stem cells

I'm certainly going to keep an open mind and monitor the research!

Berni51 profile image
Berni51 in reply to erash

There have been some new developments that are promising to help the stem cell angle. One researcher is trying to prove that the B cells are very involved ane I believe killing T cells. I am hopeful that this is at least investigated. Stem cells have a risk and it would be nice to know all that is happening so that they can enhance the procedure process and success. Also I hope for a way for those who can not find a way to pay for them, to get the help they need. I know my insurance would not pay and unless Medicare would change to pay I am outta luck. Still I have God.

kdali profile image
kdali in reply to Bygonelines

How do I get in contact with this person? I have my own placenta banked for this purpose, but I didn't know anyone was doing it. I'm also not ready to get chemo and do this, but I'd like to have the info for when the time comes.

StemSearcher63 profile image
StemSearcher63 in reply to erash

I was diagnosed in 1989. Took Avonex,Tysabri,Tecfidera and now on Ocrevus. I have been intensely researching stem cell therapy & have found

Riordan clinic in Panama City,Panama, Stem Cell of America in California where they bus you to Tijuana for embryonic cells from Georgia Republic of

Russia plus numerous chiropractic centers in Georgia (state of, in USA) who give stem cell therapy for arthritic joints but have no experience with MS though they would be happy to inject you with some sort of stem cells

for lots of dollars. Please let me know if you know of people who have

experience with treating their MS with stem cells and most importantly

WHERE. I am very concerned about the cleanliness of the cell collection and treatment process that occurs prior to infusion.

kdali profile image
kdali in reply to StemSearcher63

I can’t comment on this clinic and MS, but I will be able to tell you in a few weeks about my family’s experience, if you’re interested.

StemSearcher63 profile image
StemSearcher63 in reply to kdali

Yes please let me know about your experience. I hope it goes well for you.

kdali profile image
kdali in reply to StemSearcher63

Will do! It’s not for me though, but I’ll have some basic info for ya. I did talk to someone there who’s brother was failing Tysabri and has started to make improvements, and I didn’t ask for that info nor offer my diagnosis. 🤔

Kevin_McMillan profile image
Kevin_McMillan

My recommendation is to do as much research as you can. Insurances are not paying for it becaus it isn't very successful. It is expesive but if it is something they can have success with, it would be life changing for many. It is like most treatments, money maker, Big Business! I have trouble with these companies charging broke MS patients huge money for these old cancer drugs their passing off as great drugs.

Sounds like you are on the right track with your investigation!😉

Berni51 profile image
Berni51 in reply to Kevin_McMillan

When you do research use Google.scholar.com and get the published articles or research articles with as many citations as you can and with conclusions. Often there is some info out there from these articles that is for free. But there is a lot of just anyone posting whatever to try to have a few minutes of fame and there are many articles not to trust nor are they safe.

StemSearcher63 profile image
StemSearcher63 in reply to Berni51

I usually use PubMed.gov

I saw something on Facebook for stem cells. Stemgenx in California they said it's $15000.00 that they have been doing it for 10 years and have 26 success stories. But my husband also contacted some pain center in Seattle doing same thing. Liposuction for own stem cells and then inject them back into problem areas. I don't know what to think. My nuero said she was part of a stem cell study different thing. But 2 of her three patients UW MS clinic worst of worst had severe complications. and out of 10 patient study at few hospitals in us her opinion is not safe yet.

CalfeeChick profile image
CalfeeChickCommunityAmbassador in reply to

Agree, they are not really stem cell Ms treatment. There is a place in California I want to say near Santa Barbara offering the same fake stem cell treatment. They want $24,000 for first treatment to me they’re taking advantage of desperate people. Of which I am but I also am not foolish.

nes78 profile image
nes78

i had hsct done over 4 years ago at northwestern in chicago. things like stemgenx is bogus. see my short story below. i only wish i could have had it sooner. btw medicare and my secondary covered everything! i was 34 in a nursing home right before seeing dr. burt. he said he thought i would walk again. he was right. happy to answer any questions.

vimeo.com/130065935

erash profile image
erash in reply to nes78

nes78

WOW!!!! Made me teary eyed. Wonderful!

CalfeeChick profile image
CalfeeChickCommunityAmbassador in reply to nes78

I did a screen shot of your post after viewing your video. I am so happy for you, you are A blessing and a light in our search for a cure or treatment. I am now 69 and just went numb 15 months ago. I was active long distance bicyclist before. Now I am ok and have done allot before I went numb. My sadness in all this is I’m considered too old for trials. Thank you for sharing your story. Hope you have a wonderful life full of joy😊🙏💞

nes78 profile image
nes78 in reply to CalfeeChick

when we met dr. burt he asked how we found out about him. most people find out about him through other patients. can't help but be frustrated about that as i was followed at univ. of maryland, then johns hopkins and other good hospitals for years. why didn't anyone suggest this to me knowing how well i have done w. chemo and immunosuppressants over the years? my caregiver found the study on clinicaltrials.gov. i don't know how age plays into hsct at northwestern but i was treated off study.

dogdaddy profile image
dogdaddy in reply to nes78

Dr Burt does off study treatments?

nes78 profile image
nes78 in reply to dogdaddy

at the time i think if he thinks it will help yes as i was treated off study. he said i think you can walk again. and he was right.

dogdaddy profile image
dogdaddy in reply to nes78

That's my dream to be able to walk again

dogdaddy profile image
dogdaddy in reply to nes78

But there are no current trial by Dr Burt...do you know if he does stem cells without the need to have chemo?

nes78 profile image
nes78 in reply to dogdaddy

i'm sure he doesn't. hsct is all about the chemo. if you're interested there is a very active fb group listed at the bottom of my short story. i can't keep up with it anymore but it's grown tremendously over the years and people do leave the country to have it done. everyone is different but without it i would still be in that nursing home...it's been almost 5 years and i was very fortunate to have it done when i did. vimeo.com/130065935

dogdaddy profile image
dogdaddy in reply to nes78

I watched your video earlier. It was very impressive and I know what it's like to be sent to nursing home too....at a very young age....I had my husband break me out after 3 days....no way was I dealing with that reality.

nes78 profile image
nes78 in reply to dogdaddy

considering i was followed at some of the best hospitals in the us for years and when i arrived at northwestern i was told i was seriously undertreated that's just embarrassing. it's ridiculous we have to be pushing pushing pushing 24/7 to get someone to do anything. some people get dropped by their neuros for mentioning hsct! it's not for everyone and there are no promises. but i was on betaseron and big doses of cellcept for years just getting worse.

dogdaddy profile image
dogdaddy in reply to nes78

I was being treated at the Mellen center at the Cleveland Clinic for the 1st five years...and they have definitely failed me ..I was on copaxone and ampyra but they never mentioned anything about stem cells and last time I was in hospital I pressed the neuro's on the topic and they basically told me no way can that help....grrrr after I had a major relapse I had to fight to even get IV steroids and they sent me home without even tapering me off because my blood sugar reached 300+ with the IV steroids...so I'm wheelchair bound now

nes78 profile image
nes78 in reply to dogdaddy

i thought the cleveland clinic was very highly regarded. i'm surprised to hear that but not really since i left johns hopkins. i had been on betaseron and high doses for cellcept for years and another neuro thought the cellcept dose was too high, lowered it and that was the beginning of getting bad fast and nursing homes. before hsct we were told to get a hospital bed and deal with it, this is ms. i was 34 and no quality of life. you shouldn't have to fight for steroids or anything that helps. period. it makes me so mad.

dogdaddy profile image
dogdaddy in reply to nes78

I know the Cleveland Clinic has a great reputation but they don't live up to that reputation. They could have done more in the early stages of my disease but they did not. They are just drug pushers for big pharma, and now I'm in as bad a shape as you were when you found Dr. Burt

nes78 profile image
nes78 in reply to dogdaddy

can i ask - are you rr? i know people go to dr. burt soon after getting dg. or are on dmds that work for them and with no new activity he will not treat them. i'm in a closed fb group just about hsct and northwestern but people do leave the country to have it done. he treats multiple ai diseases - ra, ms, stiff person - hsct can potentially help so many people! but you're right. it is all about drug companies. it's disgusting.

dogdaddy profile image
dogdaddy in reply to nes78

CC treated me as RRMS but after my last relapse I was able to get an MRI done with the help of MSAA and that MRI showed I maybe heading to PPMS. I was hit right from the start with debilitating MS. One day in 2011 I was fine and running a dog rescue, the next day I was in the hospital with total paralysis and lost my ability to speak. It came on fast with no warning signs. I didn't even know what MS was when they told me I have it.

nes78 profile image
nes78 in reply to dogdaddy

you remind me of me. i hate to say that. i was fine, just graduated college, moved for a new job and i start working and soon after i get a headache for a week. i go to a doctor i never had met and i couldn't walk a straight line, or do the pasat and he ordered a ct scan and it was abnormal. soon i don't know what year it is and i'm in the hospital asking for family who is right in front of me! they though i had some kind of brain infection. it was so weird. and i took a year off from work and had mostly infusions of cytoxin and it brought me back to life. i was able to work for almost 4 years. but my ms has been so aggressive from day 1.

dogdaddy profile image
dogdaddy in reply to nes78

what is cytoxin? I never got my life back from the first flare...oh I looked it up drugs.com/pro/cytoxan.html is this the drug they gave you?

nes78 profile image
nes78 in reply to dogdaddy

yes. when i was first dg. in 01 there were not nearly as many dmds and i happened to have an aggressive young doctor - the dmds were not going to work fast enough. i ended up having to put my job on hold and i had cytoxin infusions once a month for 9 months. it really helped. then when betaseron wasn't cutting it immunosuppresants were added to that. i handled all the meds well but yesterday found out i have osteoporosis. i just turned 40 in april and aside from genetics they also said ms drugs and all the other meds is probably why i have it. couldn't have done anything about it but seriously?! damned if you do and damned if you don't.

kdali profile image
kdali in reply to nes78

I've seen so many Dr Burt stories! I k ow you were not lucky to be so sick, but lucky to be treated by him! Ty for sharing 😍

nes78 profile image
nes78 in reply to kdali

i WAS lucky to be so sick and it happened very fast. i was dg. in '01 and had significant invisible symptoms for years but i physically started falling apart in less than a years time. when i got to chicago to see if i could be in the study i could barely move they kept me overnight to give me chemo! that was totally what i needed. and the rest is history :) before flying to northwestern i was told i would need a hospital bed and nothing could be done and that's ms.

kdali profile image
kdali in reply to nes78

I watched your video again last night, but I remember you from watching it when I was first diagnosed. I bawled my face off then, you gave me so much hope! Thank you for sharing your journey with the world 😘

CalfeeChick profile image
CalfeeChickCommunityAmbassador

There is a fellow that was on our site. I just remember his name was something like RichyRich. He went to Mexico for stem cell treatment and had a great response.

TRUE STEM CELL treatment will not be legal in the United States until 2022! Others have received temporary relief from some of the above mentioned procedures. Research stem cell treatment treatment, it is only available in a few countries and will cost upwards of $50-60 thousand dollars or more. If I had the bucks, I would already have had it done ✅ maybe a “Go Fund Me” account would help. 😊

suzy20 profile image
suzy20

I sure wish stem cell therapy could rebuild damaged myelin. My doc cautioned me that there are several "clinics" out of the country that offer "stem cell" cures that are absolutely fraudulent. Please do a lot of research before you commit to anything:)

CalfeeChick profile image
CalfeeChickCommunityAmbassador in reply to suzy20

I doubt I'd ever be able to afford it, and by the time it is legal in the US, I will probably be considered too old to receive it. I've already been turned down by various drug trials because of age.😞 (don't they know that 70 is the new 50?😉😊) I just told my doc that this week.

You may also like...

Has anyone here tried stem cell therapy for their MS?

Has anyone here tried stem cell therapy for their MS? What kind did you have? What were the results?

Have you heard about HSCT? Stem cell transplants for MS?

Hematopoietic stem cell transplants use chemotherapy and your own stem cells to stop MS in it's...

Stem cell

volunteers to do stem cell research on people that have MS. Have any of you had this done or think...

Autologous Stem Cell Transplantation for MS

Hefner, MD Autologous stem cell transplantation for multiple sclerosis might help slow neurologic...

Finally got home late last night!

goodness! Thank You Everyone for the Prayers, Love and Good Vibes! 🤗💕🤗💕 Thank You @[167412]...