HiCy in Europe

A board to discuss Revimmune as a potential therapy for multiple sclerosis
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Pesho
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HiCy in Europe

Post by Pesho »

Hello, I'm new to the disease and the forum :(. I'm searching for a cure like everyone else and the things I'm considering are HSCT or HiCy. Just can't find any information for trials or even where to pay in Europe for HiCy. As far as I understand it can be done in every cancer clinic and it is not anything new, just when I asked my neurologists they looked at me strange. Most doctors don't have a clue about stem cells or this treatment, or prefer not to talk about things outside their competence. So, if anyone knows a place in Europe for HiCy please tell me.
Lyon
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Re: HiCy in Europe

Post by Lyon »

In your self education process you might also want to look into Campath if you haven't already.

Not trying to sell anything else short because I don't have any personal favorites but Campath and Rituximab have also been used for rebooting the immune system with seemingly good results.

Considering that Campath originated at Cambridge http://en.wikipedia.org/wiki/Alemtuzumab it might open up another or possibly the only option for you in Europe.
Pesho
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Re: HiCy in Europe

Post by Pesho »

I don't get it. The treatment sounds easy enough, the medicine is known for a long time and even used in MS treatment in lower doses. They combine it with Campath I think, which is also not something new. It sounds almost impossible that no one in Europe in not performing this, even fully paid by the patient. Some doctor's a fiend of mine knows will ask around in Germany, and I'm hoping for a positive answer and price a lot lower than 60 000 Euros, otherwise I will try HSCT in India.
Lyon
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Re: HiCy in Europe

Post by Lyon »

I hope you didn't take what I said to mean that it's not available in Europe. I don't know one way or the other. I just meant that considering Campath might open some other options for you.

You might already know but I noticed from another post that the Revimmune protocol has been renamed "Cyrevia"
Frank
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Re: HiCy in Europe

Post by Frank »

Dear Pesho,

I heard that "innovative" MS treatment could be done in Dresden - I guess its the university clinic, but I'm not sure about this.
The person I know (not personally) who is involved in many research activities concerning MS is Prof Ralf Gold - he would be the one I would contact if I was looking for extraordinary options in Germany:
http://www.uv.ruhr-uni-bochum.de/pvz-pl ... 994222.htm

Greets
--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
Pesho
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Re: HiCy in Europe

Post by Pesho »

Talked with my neurologists yesterday about treatments like HiCy and HSCT. She said, that for people in good condition they are not recommended. The side affects would be greater than the benefits, and the long term effect is not known. So I'm a bit disappointed, expected that a doctor would tell me that I can get some of those treatments. All doctors that I have asked don't know anything about treatments like those, or prefer not to talk about them. I can pay 40 000$ for HSCT in India, or Revimmune somewhere, just no doctor would recommend a treatment like this :(. It is hard to go against everything the doctor tells you and spend your family life savings and sell a few properties for a miracle that might not be true.
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shucks
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Re: HiCy in Europe

Post by shucks »

Any time you get a neuro outside of crab drugs, my experience is that they get shifty pretty quickly. I think that doing your own research about treatments is the only way to go. I have been looking into hsct for the last year and a half, as my research led me to that as the most effective treatment. Do your own research and good luck. These boards are a great place to ask around.
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

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bee26
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Re: HiCy in Europe

Post by bee26 »

Please be very careful about HSCT. I think you are looking at Human Stem Cell Transplant, not Human Stem Cell Treatment. They are 2 very different things. HSC transplant is where they kill off your immune system as much as possible with drugs and then allow it to reboot itself or give you a transpant of your own SCs, hopefully without the MS causing lymphocytes. It is the basis of the Cyrexia treatment, but can be very dangerous if not done in a hospital that has the technical ability and experience to cope. HSC treatment is being peddled by charlatans world wide who inject you with stem cells. There is research going on into SC treatment but it is at a relatively early stage. I think Campath is a better option, but I'm no expert.
LR1234
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Re: HiCy in Europe

Post by LR1234 »

see MSRC website for personal experiences on many of these treatments.
They are very risky and not to be taken lightly especially if your MS is mild.
You can end up with more problems then you started with plus MS still.
(just saying, I have done many experimental treatments myself and have had bad side effects)
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