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Lessons from ME/CFS: Finding Meaning in the Suffering
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Stem Cells

Discussion in 'General Treatment' started by deb obrien, Aug 13, 2009.

  1. Hysterical Woman

    Hysterical Woman Senior Member

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    Hi Sushi,

    Thanks for the info. I believe that I too understand about the catching up on wellness thing. Hopefully she will continue to share information with you and us on both how she is doing and what the results of her WPI tests are.

    Take care,

    Maxine
  2. Molly29

    Molly29

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    My first stem cell infusion

    Weldman and others,


    Thanks! I felt pretty *brave* after my first infusion. My first infusion was WILD.
    I was first infused with unexpanded cord blood stem cells - CD 34+ and MSC (Mesenchymal Stem Cells)
    You have to look at the syringe that is filled with your own plasma minus Coagulation factors and read your name and what the first infusion of the two is (to my knowledge this is for confirmation and approval). My first was 6 million CD 34+ cells.
    After the first little push on the syringe my BRAIN went crazy. I felt like someone had pushed on my head and put a billion "little robots" inside that were mushing at my brain.
    The Dr. said to me through my haze "See how quickly they pass the blood brain barrier" (YES!?... I am going to throw up) "They are getting in there to change it up"


    TODAY: Yes they did, I am cognitively VERY GOOD! I do not have brain fog even close to like I used too, it's almost gone.


    Second infusion (same day ...different syringe full of my plasma again and Mesenchymal Cells) still telling the Dr. "Something isn't right" "I feel strange...*understatement*"
    The Dr. told me that was a good reaction to have and no worries.
    Later that night...I called home saying I am not doing that again.


    Needless to say I did do it 5 more times...but many other unusual effects were had by me!

    In Costa Rica I had so much energy I didn't know what to do...toes tapping, couldn't sleep, and wanting to go to the casino!
    I would like to note that for the first time since I got sick (slow onset) I caught the flu and had pink eye?
    Am getting over it and feel much better. Energy is climbing and I feel like it piles up in my body. So I understand the concept of trying to re learn and adjust to your energy levels.

    Somedays it's like butterflies are in my stomach!? Just remember I am 2 months out!

    Cort from what I understand Dr. Cheney has had up to 5-6 groups or more go, so far. My Dr. worked with them in Costa Rica and Panama.
    They are both owned by the same clinic.


    Any questions? Ask away...Nothing/No one is keeping me from talking about my experience.
  3. Hysterical Woman

    Hysterical Woman Senior Member

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    Nor should they stop you Molly! We are lucky to have you here.

    I am sure that everyone here wants to know how expensive it is to have the procedure. However, that is personal information, so please don't feel any requirement to answer.

    Thank you,

    Maxine
  4. calzy

    calzy Senior Member

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    Molly, did you follow Cheneys protocal, or are the docs following his? I would get it done, but cant afford stem cells and Dr. Cheney. I dont think you need a docs referal.
    Oh and Im very happy for you..Congrats!
  5. Advocate

    Advocate Senior Member

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    Molly and Sushi,

    Many thanks! (We needed that.) Please keep us posted.

    Molly, I really appreciated hearing the details of your treatment.
  6. Martlet

    Martlet Senior Member

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    I'm afraid I couldn't do it. Animal stem cells, yes. Placental and cord, yes. But embryonic, no.
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hey Martlet,

    I may have missed it, but I haven't seen anything about embryonic stem cells being used in the Panama and Costa Rican clinics. The Mesenchymal Stem Cells are from the patients own body fat and the other cells used are placental...I believe. At least that is what my friend told me. On her first trip down they were not yet using the Mesenchymal Stem Cells. Later, they found that adding these was extremely helpful. She said that having her body fat havested, was not fun!:eek:

    What was your experience re: this question Molly?

    Sushi
  8. Molly29

    Molly29

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    You are 100% CORRECT Sushi!

    I even went back and looked at my post to see where I said embryonic stem cells. Yikes!
    Mesenchymal stem cells can also come from the cord blood! "Mini lipo" FUN FUN FUN! NOT... OUCH!
  9. Molly29

    Molly29

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    Dear Maxine (BIG HUG!)

    Thank you for welcoming me! I am glad I can openly SHARE ... I think we ALL get so much more from SHARING OUR EXPERIENCES!
    In regards to cost...it varies since Cheney is bringing groups and there are 2 different lengths of stay (even three if you would like).
    I can tell you for me it was approx 17,000 USD plus hotel. The same as Cheney's patients. I do not know what Cheney charges to travel with his patients?
    IMO the easiest hotel is the Cristina in San Jose, very very close and a hearty breakfast every morning...you could walk to the clinic, if you can. If not, they are very professional with pick up and drop off services as well as on the side shopping trips (you have a kitchen in your room and the native veggies are AMAZING!)
    Depending on how long you stay (there are 2 types of treatment now because the MS patients were doing so well with the "mini lipo" (to retrieve your OWN cells *which Cheney does* and let them expand and duplicate and inject them back into you) 2 weeks hotel will cost around 80-90$ USD a day (the Clinic can get you more of a discount) depending on the room. The big save is the kitchen and the Clinic picks you up immediately at the airport and whisks you away and get you settled into your hotel and again come and get you for your infusions etc. take you home, and when you are leaving take you to the airport as well.
    Pretty good for tired people. SMILES!

    More coming for Calzy and Advocate!
  10. Martlet

    Martlet Senior Member

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    Sushi

    I'm sorry. I was not aware that mesenchymal cells can be harvested from one's own fat. In that case, this is GOOD NEWS and I look forward to hearing more.
  11. Robin

    Robin Guest

    Wow, thanks to Molly an and Sushi for sharing! This is great news!!

    This is one area where I would love to see Cheney actually publish. It's great to hear the anecdotes but the larger picture would be interesting: how many people benefited, how many didn't, were there any adverse reactions? One, two, and five year follow ups, etc. would be useful.
  12. dipic

    dipic Senior Member

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    What do they do if you literally have like zero body fat (like me)? :Retro tongue:
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    My friend went down there with a patient who was in this zone. She said they had to really scavenge, but they found enough. Not sure what that person looked like afterwards though. :eek:

    Sushi
  14. dipic

    dipic Senior Member

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    Interesting. Yeah, I honestly have no idea where they would take it from me. I have a bit on my bum and that is honestly it. :Retro redface: I'm 6'1" and weigh a mere 125 lbs. :worried: Wonder how much they actually need.

    Also, I'm assuming not, but maybe the fat cells could come from someone else (a family member)?
  15. Hysterical Woman

    Hysterical Woman Senior Member

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    Molly

    Hi again Molly,

    You are welcome for the welcome :Retro smile: And thanks for sharing the cost information.

    If I understand your post correctly, you had a total of 7 infusions all within the same trip? Is that "normal" or does it depend on age, illness level or other factors?

    Did they talk to you about long term prognosis? Do people go back more than one time?

    Any information you can provide will be appreciated.

    Thank You,

    Maxine
  16. Molly29

    Molly29

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    Trust me they can find a few fat cells!

    Dipic
    There is a certain amount they need to retrieve from your body, and the process is to get the cells out with as little damage as possible. People are black and blue all over from this process and trust me they will find some on your body somewhere. You may need to have a few extracted then come back later after they have expanded (and they can "freeze" them for later too if you need them) them to the amount they need to infuse you.
    You wouldn't want a family members fat cells, YOUR fat cells carry the info the body is looking for. You could also go with the MCSC (mesenchymal cell stem cells) from cord blood. M
  17. Molly29

    Molly29

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    Maxine!

    Hey Maxine

    I had 8 total infusions all within the same trip. There isn't really a NORMAL for stem cells. Usually they start you off on a certain amount of infusions. That being said, I had the option to stay longer and have more infusions. Now, with the "mini lipo" you stay longer because they replicate your cells, so they need to grow and expand. Then they are checked for quality etc.

    Age: I would say it is up to your body and how IT responds. Others including Cheney say that it is important to be in the "window" of 40 years old and under. This is predicated on the fact that 40 year olds and under have more growth hormone (the younger the more growth hormone) which helps in the stem cell process and getting well. A few of the doctors I spoke with said that the stem cells will travel to YOUR bone marrow AND everywhere it is NEEDED and revamp your body. I have been told many times by the docs in Costa Rica ...age doesnt matter, your BODY and how IT responds is important. And seeing the age of many others there I would say that is true.
    I am in the window.

    Length of Illness: It was discussed obviously that the shorter the duration the greater the recovery, BUT they have also had a mixed bag with long term MS etc patients who got better quickly and some who were sick a short amount of time possibly not responding. My friend was sick with MS for 15-20 years, has a new life now.
    Other Factors: No drinking or Smoking. Watch your diet...
    I asked re: viruses and replication? *the new cells will help shift the corrupted genotype*
    I wanted to know if I could become worse, they said it could happen. I asked so MANY questions so if you have particulars let me know.
    Long Term Prognosis: Unknown. They never make a promise of a cure. After my consultation and research, I knew I would try it and if I have to go back, I will. I would rather feel better and have the hopes of eventually returning to something close to normal, than to not have hope at all.
    Yes, people go back more than once. Sometimes it only takes the first time.
    I am keeping a cool stem cell journal to chart myself!
    Hope I have answered your questions. Any more? Feel free to ask.
  18. calzy

    calzy Senior Member

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    my friend was 58 years old...( Cheneys first patient)
  19. calzy

    calzy Senior Member

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    When I discussed Cheneys stem cell treatments with Dr. Klimas,and if she would get on board with it she gave me a very stern answer..NO! lol,
  20. Hysterical Woman

    Hysterical Woman Senior Member

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    Thanks Calzy, that is encouraging.:Retro smile:

    Maxine

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