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A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Jamie » Tue Jun 30, 2009 2:01 pm

I guess the proof of efficacy will come with time.

Hopefully a big announcement in September and ongoing anecdotal evidence from the good people on here.

I will of course update everyone from Monday(!!) onwards with Mel's scan results and any corrective action needed.

Now the thoughts inevitably become - what if she doesn't have the blockages?
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Postby peekaboo » Tue Jun 30, 2009 2:06 pm

Please tell jamie I guess mel is #7 isnt that a lucky number? good luk to the two of you and have a safe trip there and home again.
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Postby mrhodes40 » Tue Jun 30, 2009 4:13 pm

PX said
However, my larger question remains: if an auto-antibody could be identified for MS, and the cure would be simply to block this antibody, why isn't this done with proven auto-immune diseases.
Because you are thinking tha tother diseases are proven autoimmune ones and most are not. Most are like MS and they do not have a proven antigenic target.

But a true autoimmune disease is when the body mistakenly makes an antibody to a antigen on itself. A good example is ADEM.

In ADEM you get a shot for rabies and it causes a cross reaction with your brain antigens in some people and the myelin is attacked. So the brain tissue LOOKS LIKE the rabies peptide sequence and that is how the mistake happens.

Once the mistake happens it is this antibody going into the brain and causing damage to otherwise perfectly healthy tissue--

Obviously if you block that antibody the damage does not happen. End of disease.

The problem is most of our "autoimmune diseases" don't have an antigenic target if they did they could fix them this way. That was how tovaxin was supposed to work.

here's the dirty little secret: the proven autoimmune diseases like ADEM are self limiting. They end in just a little while because your body knows better than to keep whacking itself that way....

Just like EAE is self limiting and it ends.

And rheumatic fever

nobody makes an antibody for these to block them because they are self limiting. It would not make money for the company to do so.

But in theory if we can find the antigenic target and the errant antibody and we can block it in any auto immune disease the disease would stop because the disease IS nothing more than that bad antibody attacking.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby peekaboo » Tue Jul 14, 2009 11:14 am

LR - great news from Dr. D...I would contact your specialist and forward Dr. D's info. Your specialist probably doesn't know what/where to look for and hopefully Dr. D's analysis can guide your specialist. If he/she doesn't want to play...get another opinion :idea:
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Postby costumenastional » Mon Feb 08, 2010 8:20 am

Nicely done!
Another patient that took the situation in his/her hands :)
We ll be anxious to hear about your improvements (yes, they will come).

Thank you for updating.
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Postby shye » Mon Feb 08, 2010 9:29 am

thanks for the info LR1234-
What has changed for you after getting the angioplasty? Not enough i guess, since you are pursuing further..
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Postby Cece » Mon Feb 08, 2010 9:59 am

LR1234 wrote:I just want to say that the MRV/CT scans can show false negatives as can dopplers and the venogram is the only true way of showing the issues (in my opinion) but a venogram will only be performed if there is clear evidence of issues. This means that only the dr's who have seen and treated loads of MS patients will be brave enough to go on a slight suspicion whereas new dr's coming on board may refuse to take it further.


This makes a lot of sense...and a good reason to go with a doctor who has done this before...if only there were more of them out there!!!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby LR1234 » Mon Feb 08, 2010 10:19 am

Hi Shye,
Its really hard to tell. I always have had mild MS. I think that my head feels better and I don't get that "I'm going to pass out, spaced out feeling". My eyes seem a bit better (but I still have floaters) and I still get weakness of arms and legs but not all the time. Things seem to come and go so I just don't know for sure.

I want to chelate all the heavy metals in my body and carry on with my healthy eating plan but I also want to make sure that every stenosis is sorted. I kind of want to tick that off before I can move on to the next stage of my treatment:)
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Postby shye » Mon Feb 08, 2010 4:34 pm

LR1234
I go for 2nd chelation tomorrow (once per week)--what is so great about it so far is the magnesium infusion I get pre-drip (I get the white coat syndrome, because this is so imp to me!, my blood pressure goes too high when I get to drs office (fine before I leave home 8O )--so I get the pre-infusion of Mg to lower the pressure, and what an incredible difference that makes for me--my whole body much more relaxed, relieves pains, aches, etc. And then some more Mg in along with the EDTA--but won't know for a few weeks (when do urine and I think blood test) if EDTA doing any good. From all I've read, it will do much good--
I'm assuming the chelation (and diet and supplements) will in the long run sort out much of any stenosis i might have--
so in 20 to 30 weeks I will be a different person :lol:
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