This Is MS Multiple Sclerosis Community: Knowledge & Support

Assuming all your immune system (IS) gets wiped out and reconstructed from the scratch. I think its very improtant for the patients safety to question:
What will the features of the new IS be?

- Will one be vulnerable to childs disseases again, which are much more dangerous (even potentially fatal) to adults (measles, roseola etc).
- Will one have to repeate all relevant vaccinations?
- Will one catch one cold after the other like little kids (eg 4 years old) do?
- As Bob already mentioned - will allergies be eradicated too?
- How about controling fungal overgrowth like Candida?
- How about the education and strengh of ones new IS? The tymus gets smaller with age. So will the new IS be generally weaker and show a greater tendency towards autoimmune reactions (which are partially controled through training in the thymus)?

I would be happy to read suggestions or additional questions concerning this matter.

--Frank

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Treatment: CCSVI both IJV ballooned 09/2010, No DMDs, Tysabri on hold after 24 Infusions, after LDN, ABX Wheldon Regime for 1 year.

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It would be very interesting if a HDC trial participant would ask these questions to the trial investigators.

Both whether they evaluate these questions and if they already have results on them.

--Frank

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Treatment: CCSVI both IJV ballooned 09/2010, No DMDs, Tysabri on hold after 24 Infusions, after LDN, ABX Wheldon Regime for 1 year.

These questions have been swimming around in my head for a while also. Thanks for writing them down. I sure hope someone responds with answers from their trial investigators. I wouldn't enjoy a repeat of childhood vaccinations but if this is a possible cure I'll gladly roll up my sleeve.

Marcia

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Marcia

To all,

Well these are some very interesting and relevant questions. I will be getting all my childhood shots again at one year. Since my immune system is new it has no memory so I am told it could be easier for me to catch colds and get sick. I can speak from experience and say that I have been out of the treatment for seven weeks and I have not gotten sick. Nock on wood. I have not changed my daily routines going to the gym every day which some would say is a hot bed of germs but so far no sniffles.

I can say that the effects of the Chemo appear to getting better and my strength is returning. I know from my latest blood work that my blood cell count is rising which is part of the reason my strength is getting better.

In regards to some of the other questions that were raised people who have gone through this have gotten sick during the proceedure and wound up in the hospital for some heavy duty IV anitbiotics. I was lucky and able to avoid this problem during my proceedure. I did experience typical problems of a compromised immune system during my treatment. ie. fungus and yeast that was dealt with through anitbiotic powders. I was also on a heavy dose of oral anitbiotics during the proceedure. I will let you know in the spring if my algeries have gone away and in regards to the thymus this is why this proceedure works. The thymus retrains the new immune system as when you were a child and thus the bad habbits that the old system learned are no longer around only the instructions given by the thymus to the new cells. This whole proceedure or the retraining of the new immune system was explained to me. This process is very simple in theory. Hopefully it works as planned.

HiCy

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Bob,

The doctors really feel that CTX has its problems but it is fairly safe other than the typical chemo side effects. Yes there is the possibility of sterility but I have three kids and don't care. You could have some permanent hair loss but this would be ok because I am sick of getting my hair cut every three weeks. I have more than enough to go around. There can be problems with your bladder which is one of the things they watch very closely when under treatment but they give you meds during doses to protect your bladder wall. There can be some heart problems and lung capacity issues but these are rare and lets remember to put all this in perspective.

The chances of any of the nasty stuff happening is rare but the chances of my MS getting worse is a sure thing. I will take my chances with the side effects any day for the chance of getting rid of this disease and improving my current disabilities. The doctors would even prescribe the reatment again if for say the disease went away for say 4-5 years and then came back. 3-4 weeks of feeing like dirt for 4-5 years of no disease. Not a tough choice. Like I said before it is a watch and waiting game at this point and we all just keep our fingers crossed but it is better than doing nothing. They check all this stuff every three months to make sure non of these problems develop.

HiCy

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Brett, thank you very much for the insider info!

--Frank

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Treatment: CCSVI both IJV ballooned 09/2010, No DMDs, Tysabri on hold after 24 Infusions, after LDN, ABX Wheldon Regime for 1 year.

Bob,

Not really sure if the potential for future problems was discussed. It was sort of all rolled together. Problems today, tomorrow, three months from now was really all just potenial problems. To be honest I never thought twice about any of them.

HiCy

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