Autologous stem cell therapy for CMT

[jpfarm]

Just thought I wouold update everyone. I had my first autologous stem cell therapy 10-03-08. This was part of a private trial, so I will not have specific information that I can share about it. I do however want to share what I can.

First off, it was very enlightning to meet and work with Doctors that are directly involved in the research.

I can share some successes that I have already seen and am sure other Stem Cell Pioneers can confirm some similar results. I have a problem with shaving (since I have gone on Blood thinners). The morning of my therapy I developed a severe razor burn. These normally take at least a week to go away sometimes longer. Within 24 hours after my therapy it was gone. I am saying this in order for those that are sceptical to see the healing that can take place with stem cells. I am also blind in one eye, not related to CMT but due to some extensive lazer surgery to correct a blood vessel bursting within my eye. For the past 10 years, I have only had a little periphial vision and it was limited to light and blurry colors. Since my procedure, my vision has increased and I can know see outlines of objects with this eye. Even though these are totaly non related to why I had the therapy, I thought I should share this information.

What I am seeing that ties to my disease CMT is an increase in energy which hasn't been around in a long time. I am also having some numbness/tingling in my hands which I hope is directly related to helping my problem. It will probably take a long time to see actual results, as first we have to fix the nerves and then the nerves can fix the muscle degeneration.

I am scheduled for my second treatment in Novemebr (exact date not set yet) & will have another in late December or January of 2009 for a total of three treatments. I will keep you updated on my progress and hope that someone with my diease CMT will someday stumble across my post.

 

[barbara]

Fantastic!

JP - This is a very promising post you have made. I hope everyone who reads this realizes that you have taken the opportunity at your own risk, time and expense to be in the trial, not just for yourself but for others that may suffer from CMT. I applaud you and in my estimation, you have earned your Pioneer status big time.

 

[rosech44]

Wishing You Well

Jp---
Happy To See Your Post, Glad You Are Seeing Some Improvements, Looking Forward To More Positive Posts From You--

Best Wishes

 

[Mysty119]

JP

Hooray to you!!! It is so encouraging to read of the improvements realized because of stem cell treatment!! I am very happy for you. See me smiling??

 

[Johnny5]

I too suffer from CMT ands stumbled accross this posting. I sincerely hooe everything works out for you with this new treatment. I honestly didn't even know there may be a stem cell treatment for CMT. WOW, now I have some hope.

JP, I am rooting for you!

 

[jpfarm]

update on treatment for CMT

Well, it has been a little over 2 full weeks since my treatment and though I would give an update.

My vision in my blind eye continues to improve. I am now seeing light and movement directly in front of me, periphial vision is getting clearer. Still a long way to go, but what an unexpected benifit from my treatment.

Increased energy is starting to faid, but lasted longer than I thought it would. Don't get me wrong I still feel great compared to the way I used to. Aches in my joints are still gone hoping this last forever, as it has improved sleeping by 100%.

I have the feeling that something is going in my forearms and hands. May be my imagination, but is encouraging as this is one of the areas effected by CMT. Of course it will take a long time to see if this works, as first we have to rebuild the nerves and then they will have to rebuild the muscle.

My next treatment is scheduled for November 14. Can't wait to see what happens next.

 

[barbara]

CMT Hope

You continue to be an inspiration. We had two new members join today who both suffer from CMT. I am so glad that you are able to give those with CMT some hope. What an added benefit you got with your eye and also your better sleeping. I know you will give us an update after your next treatment and I am really looking forward to that.

 

[Johnny5]

Barbara,

I stumbled the other day on the original posting and I told my friend who also sufferes fom CMT about the forum and about the trial treatment JPFarm is going through.
He has given us a new hope.

Keep us posted, and to the Administrators, thank you for hosting this great site.

 

[barbara]

Glad you stumbled

I am happy you found us. Jeannine and I co-founded this forum after we had treatment for COPD in 2007 and felt very isolated. We were two of the first people in the world to have uc stem cell treatment for our disease. My son gave us the forum and we took it from there. Even wrote a book together in the hopes of helping others find information and support. We currently run Google ads to find new members and also www.seachangeforlife.com to support this forum. There is a nice group of people on here and I have to agree that jpfarm is really an A-1 Pioneer. We also have a monthly Ask the Doctor feature and please, if you have any questions you would like answered by a stem cell professional, participate! All questions need to be sent to my e-mail. It is one of my favorite forum features.

 

[Johnny5]

Where do I even start to look for stem cell treatments for my disorder.
JP, seems to have hit a jackpot with a treatment specific for CMT. (at least i think he did). Forgive my ignorace, i am very new to the world of stem cells.

John

 

[barbara]

Johnny - I will contact you concerning the private trial that jpfarm is in. As far as jackpot, it is far too early to really call it that. Hopefully, it turns out that way for jpfarm. This whole forum membership would be elated, I can tell you that if it can reverse his disease. Stem cell therapy does not work for everyone and it is in its infancy with a disease like CMT. From time to time, we are contacted by private companies wishing to recruit people to try stem cell treatments. We scrutinize these companies and if we feel our members might wish to participate, pass the information on to members. Sometimes, the company only wants a certain type of patient and unfortunately, unlike clinical trials for the FDA here in the U.S., treatment is not free, although it usually is at a reduced cost. We do not endorse any companies, clinics or doctors and each person is on his or her own to decide if they would like to participate or seek treatment. I suggested to jpfarm that he might wish to participate because there was a huge opportunity for him to become one of the first people to try stem cell therapy for CMT. After consulting with several of the doctors that help on this forum, it was concluded that autologous treatment might be the best choice for him right now. Jpfarm was up to the task and the next thing was on his way to get treatment. I admire him greatly for his spirit and his desire to help not only himself but others. Jeannine put a Google ad up for others with CMT to alert them that there was hope for that disease. She and I were two of the first people in the world to get umbilical cord stem cell therapy for COPD, so we know how jp felt. He has a cheering squad on here and that is something she and I wished we could have had. That's one reason we started the forum to be here for others who need support.

 

[jpfarm]

Not sure about jackpot yet

John,

I have had great success with my first treatment so far, but the only thing is that the sucesses have been for I think non relating items.

As far as sucess for CMT I am afraid it will be at least 7 months before I know what it has done or is doing. Maybe longer. Hoping for a big jackpot though.

Through all of my research I have found no one who has a specific treatment for CMT several have some ideas but haven't been tested yet. If you decide to go forward you will join me in the journey that may help to treat CMT. I truly beleive this is our only hope. Unless some day they figure out how to replace the gene. Which I am also aware they are working on.

 

[Johnny5]

I am seriously considering this treatmet so JP you might have a cell-mate

For easier navigation, shouldn't ths thread be put in 'neurological disease' forum? It must be easier for other CMTers to find.

 

[barbara]

JP - Let's hear from you. If you would like to see the thread moved also, all we have to do is ask Technocracy, the administrator, and he will do it. You two should make the call on this.

 

[jpfarm]

I agree

Barbara and Johnny5,

I agree that it would be good to set this up in a seperate forum. I know that the category all other is usually a catch all and doesn't usually have a lot of information (resulting in fewer lookers). As we move forward I am excited that we will be generating some useful information. With the search for CMT added to Google, we may get surprised how many of us their are.

Johnny5,

If you decide to come on board, I wish you all of the luck. Just remember this is not a confirmed treatment we will both be wadeing in unknown waters.

JP

 

[barbara]

Charco Marie Tooth Disease - new forum subset

Well guys, our administrator, Technocracy moved your posts and now Charco Marie Tooth Disease has its own subset on the forum. I hope it will see a lot of encouraging posts. Thanks to both of you for your participation. This is exactly how Jeannine and I started the forum. Just two people who had stem cell treatment hoping to find others that could add to or benefit from what we said.

 

[jpfarm]

Great

Thanks Barbara, hpefully this will bring others and we can compare notes.

Countdown for second treatment, scheduled for December 13.

JP

 

[barbara]

Technocracy is the one that did the moving. If it were left up to me, I might have moved you right into oblivion. He does not allow me to touch the technical side and for good reason! Your next treatment date will be here before you know it. I am returning in November for an additional autologous treatment myself.

 

[jpfarm]

Technocracy

My thanks to you Technocracy. Without knowledgable people like you, their is know telling where these formums would end up.

Barbara, luck with your future treatment.