Stem cells and venoplasty for CCSVI while on CAP

Submitted by rcquilter on Thu, 2013-10-03 14:39

Hi, I am a year into the CAP and have no intension of stopping, therefore I am going to get stem cells from my bone marrow and venoplasty for the CCSVI ( It has been 2 years since I've had it done). I have restenosed for the past 3 procedures and I'm hoping that the CAP has allowed me to have a bit more cerebral perfusion and I had venos TOS surgery on the left side with the intension that my left juglar will stay open this time. I have disabling tremors and I have to do something. Any thoughts would be appriciated.

Rachel, I can only say good luck and I hope that it works for you this time.  We are all treading on new ground here and nobody has all the answers, I’m afraid.  When are you going to have it done?......................Sarah

A Journey through Light and Shadow

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

HI Rachel,

I've had CCSVI twice.  No noticeable improvements but maybe I'd be worse if I hadn't had it done.  I believe in the phrase - nothing ventured nothing gained!  I am very hopeful about CAP right now.

I'm curious about Stem Cell treatment.  I think it is where I will go if CAP doesn't work SO I would really love to hear about your experience.

I'm acquainted with someone who went through stem cell replacement about four years ago.  Knowing what we now know, she and I believe it worked because they take your immune system down to zero (she lived in isolation for many weeks) and rebuild it, therefore killing off the cpn infection.  She said now she would try abx first, knowing this. (Of course, it also cost her a fortune to do stem cell as an 'experimental' therapy, because her insurance wouldn't cover most of it and that may be affecting her opinion.)

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Hey ...

I am a newbie here.  Can someone explain to me how, if CPn is this insidious parasitic infection that has invaded and made host of many of our cells; how can "taking your immune system down to zero" kill the CPn?

If this stuff works, then one must surely question the whole CPn = MS hyhypothesis?  Am I just placing a cat amongst the pigeons or what?

 

G

“Don't believe everything you read on the internet.”

―    Abraham Lincoln

They destroy your immune system in order to 'build it up again'.  I think it's an anti-rejection thing, but she and I aren't really in contact, so I only get bits and pieces of info in chance encounters and from her friends.  (I hear she's fine now, so it apparently worked for her. Of course, I hear she got massive doses of antibiotics, too, so who knows... maybe it wasn't the million dollar treatment, but the few dollars worth of abx that did it.)

Our immune systems / blood carry cpn throughout the body when there's an illness or an injury, so it makes sense if you destroy (or clear) the immune system, you're destroying the delivery system, the storage location and likely the cpn itself with the heavy-duty drugs which she was told are similar to chemo.  I remember when she and another patient  began that process, they were advised it pretty nearly kills you before they begin rebuilding you. 

 I'm no expert on it, so I'm not going to defend it here.  I just think, if they destroy that much of your blood delivery system, it's a fair likelihood they've gone a long way to killing or exposing your cpn infection.  Then, even if it's not totally destroyed in your body, because cpn replicates so slowly in the grand scheme of things, you'd probably die of natural causes before cpn ever gets to the point of debilitating you again.

I'd opt for a few, cheap, simple, accessible antibiotics first, before seeking out something so drastic. And, no, I don't think this flies in the face of cpn bacteria causing or triggering MS.  If the stem cell process exposes and kills the cpn, it's just a more extreme, dramatic way of doing what we're doing here, which is stopping its replication, exposing it and killing it.

 

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Campath does the same thing: it seems to work on early rrms people but when a trial was done on spms people they got worse and quickly. I guess the untreated germs were having a field day and this might eventually happen to the early stage people. I. hope I  am wrong...............Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Hi, I am of course very interested in how this goes for you.  I wish you all the very best with it, and like many others really want to hear all about it.  Glad you are sticking with the cpn treatment, understand that it is very slow, and if you discover a quicker way to get rid of this beast, then I really hope you succeed.

Love Suzanne

diagnosed RRMS 2000 - had v little trouble til 2009 when changed to SPMS - since then things got steadily worse.   Had ccsvi procedure 3 times, helped with general fatigue but did nothing for walking - started abx 24.08.2

Hi, I am of course very interested in how this goes for you.  I wish you all the very best with it, and like many others really want to hear all about it.  Glad you are sticking with the cpn treatment, understand that it is very slow, and if you discover a quicker way to get rid of this beast, then I really hope you succeed.

Love Suzanne

diagnosed RRMS 2000 - had v little trouble til 2009 when changed to SPMS - since then things got steadily worse.   Had ccsvi procedure 3 times, helped with general fatigue but did nothing for walking - started abx 24.08.2

I would never do chemo, because that makes no sense. I am hoping that the new stem cells would relieve my suffering. My question to everyone is can I skip a day of Doxy and Azithro? because I'll be having surgery on the day I usually take the Azithro and Doxy. I'll be getting treated the Wednesday after my 5 day pulese. I look forward to gets some fedback.

To answer your question, there is no reason to skip a day of antibiotics.  I broached this to my surgeon when I was about to have my gallbladder removed and he said these abx covered the risk of surgical infection, so he was fine with me continuing to take them. 

 You should tell your physician you are taking these antibiotics, though, since it's probable they are going to prescribe you some antibiotic in conjunction with the surgery.  They usually have you fill out tons of forms before any surgery and you have to disclose these meds in the information you're giving the surgeon.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi