Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

peekaboo · Post by **peekaboo** » Sun May 03, 2009 9:20 am

Good/Cool Doctor Hammond good news

chrishasms · Post by **chrishasms** » Sun May 03, 2009 10:13 am

Yeah I agree. I allowed them to include my data in their reports but this has nothing to do with Revimmune. If I have a clogged vein or a stenosis they too would tell me to have it fixed.

I'll tell you right now I'm not going to cloud any Revimmune data. We are all getting better. I just want anything else that is wrong to be fixed as well.

I guess I could tell Dr. Kerr but he would just ask me what that has to do with him.

By the way, I am on 4-AP and Kerr knows about it and could care less.

First of all we know I am getting better because the AUTOIMMUNE side of MS has been addressed. Whats wrong with me getting the other part taken care of? I highly doubt if you had cancer that spread from your lungs to your liver you would only want them to fix one or the other!

cheerleader · Post by **cheerleader** » Sun May 03, 2009 10:39 am

chrishasms wrote:Yeah I agree. I allowed them to include my data in their reports but this has nothing to do with Revimmune. If I have a clogged vein or a stenosis they too would tell me to have it fixed.

I'll tell you right now I'm not going to cloud any Revimmune data. We are all getting better. I just want anything else that is wrong to be fixed as well.

Hey Chris...
No one's saying you don't have a right to get your veins fixed if you have stenosis ...please just make sure you let Dr. Dake know about your revimmune treatment, as well as Dr. Kerr about looking into CCSVI. You may not think it matters, or that they care, but it does matter in light of the research. It matters alot.
AC

chrishasms · Post by **chrishasms** » Sun May 03, 2009 11:38 am

I already emailed them and they didn't even mention it in the return email.

chrishasms · Post by **chrishasms** » Sun May 03, 2009 11:46 am

I already emailed them and they didn't even mention it in the return email.

To make you all feel better I re emailed them again.

cheerleader · Post by **cheerleader** » Sun May 03, 2009 12:28 pm

chrishasms wrote:I already emailed them and they didn't even mention it in the return email.

To make you all feel better I re emailed them again.

Chris, it's not about making us "feel better." Really. It's just about changing the research paradigm. You've been very outspoken about Revimmune, and have been public about recommending it thru your website and interviews, etc.

If CCSVI turns out to be the causative factor in MS, and not the errant immune system (as I believe and many others believe) and you go on to promote Revimmune as "the answer"....it will be very misleading to the many people who follow in your footsteps.

I hope that makes sense. Jeff has no new lesions or progression in over 2 years with copaxone and a lifestyle/supplement program...but we don't have a website saying he is "cured." I saw what his jugulars look like, and nothing but a stent will change them.

All of this is said because I respect you, and want you to be better...but I also believe in the importance of this research STANDING ON ITS OWN-
Let's wait until the facts are in before we tie autoimmunity to CCSVI.
AC

mrhodes40 · Post by **mrhodes40** » Sun May 03, 2009 12:37 pm

Thank You Cheer, very well said.

chrishasms · Post by **chrishasms** » Sun May 03, 2009 2:50 pm

I just got the reply from Doug and he told me to go give it a shot.

chrishasms · Post by **chrishasms** » Sun May 03, 2009 2:51 pm

Or do you want me to wait?

chrishasms · Post by **chrishasms** » Sun May 03, 2009 2:54 pm

By the way I also feel this may or may not be the cause of MS, but, to have any issues in those areas is lunacy for me. I come from a family that has suffered from PAD, auto immune, and Heart Issues. I believe there is an auto immune factor to MS. Revimmune proves this I would say. To fault me for wanting my veins fixed sucks. It's like you guys are claiming this for you. If you'd like I can do this behind the scenes and keep the results for me?

chrishasms · Post by **chrishasms** » Sun May 03, 2009 3:13 pm

Man that makes me mad! I promoted my website because this treatment has helped numerous people. I knew if it helped me it could help others. I never once put a light under a table but I put it on a lamp stand so everyone could see.

I'm so torked right now. I might as well wait until next March when my safety and efficacy trial ends to get the rest fixed. Even if my doctor says its ok.

cheerleader · Post by **cheerleader** » Sun May 03, 2009 3:48 pm

Chris..whoa. Go ahead and do whatever/whenever- really. It's what the docs say that matters. None of us "own" any treatment....There's nothing proprietary here. (That's why I've shared all the info.) We all want to help each other. Marie's point and mine was we just hope you make sure all the doctors treating you are aware of what experimental treatments you are doing, so that they can include it in their research. If JH/Stanford don't care, than go for it!
AC

Sharon · Post by **Sharon** » Sun May 03, 2009 3:56 pm

To All -

Zamboni's research included treated and untreated MSrs -

However, if vessel abnormalities were due to an inflammatory-autoimmune disease, they would be less frequent in patients treated with
immunomodulating/immunosuppressant agents. On the contrary, our analysis in the RR-SP group did not demonstrate an increased number of extracranial venous stenosing lesions in untreated as compared to treated patients

So, does it really matter? Dr Dake saw Jeff who is being treated with Copaxone; I am being treated with LDN. Don't you think we should let Dr. Dake make the call whether Chris gets treated or not?

I posted on the "vascular surgeon" thread in re: to Chris

Another thing that I thought about earlier -what did the HyC treatment do to your veins? Please tell the doc about the treatment (as I am sure that you would). Chemo takes a toll on the vascular system - you may need more time to heal.

I still would have a concern about the health of Chris's vascular system - but, the experts need to determine and make that call. Chris, you may decide to get the tests and not the treatment. I wonder what the doctors would say if you come out with a clean jugular and asygous vein? That could be an interesting dilemma - was it the Revimmune - hmm?

Cheer wrote:

If CCSVI turns out to be the causative factor in MS, and not the errant immune system (as I believe and many others believe) and you go on to promote Revimmune as "the answer"....it will be very misleading to the many people who follow in your footsteps.

Yes, Cheer I understand where you are coming from but on the other hand if Chris has these twisted veins and he uses his website to talk about the CCSVI - I think there would be benefit to other MSrs.

An update - I finally have a name and contact information for the top vascular doctor at University Hopital here in Denver. I will follow-up tomorrow. Also, I have given Zamboni's research to an orthopaedic surgeon friend of mine - I decided that if more of the medical community
reads it they might pass it on to their vascular surgeon friends. Just trying to cover all the bases!!!

And, again I must say thanks to the tenacity of Marie and Cheer; they have done most of the research and the "digging" on the Internet. You are awesome!

Sharon

cheerleader · Post by **cheerleader** » Sun May 03, 2009 4:13 pm

Sharon wrote: An update - I finally have a name and contact information for the top vascular doctor at University Hopital here in Denver. I will follow-up tomorrow. Also, I have given Zamboni's research to an orthopaedic surgeon friend of mine - I decided that if more of the medical community
reads it they might pass it on to their vascular surgeon friends. Just trying to cover all the bases!!!
Sharon

Nice work, Sharon! Hope you get some interest and docs involved in your area. That would be great-
Your point regarding Jeff on Copaxone and you on LDN is well-taken. My concern was that an experimental treatment (such as Revimmune- and they have used Chris' case in press releases) might have results skewed by including another treatment. This wouldn't be Dake's call...it would be JH's, since they began Chris' treatment first. But if JH is not doing follow-up past one year, and doesn't mind, it's a moot point. Frankly, I'm surprised at how JH is handling the Revimmune patients past the first year, (letting them choose copaxone/or not- redose/or not) I'm just surprised they didn't follow the patients for a longer period of time, before touting the results.
only time will tell,
AC

chrishasms · Post by **chrishasms** » Sun May 03, 2009 5:27 pm

OK folks I agree with everything said and I am done being mad.

My blood pressure, echo's and ekg's are all steller! I have them checked once every three months, year, and 6 months respectively. I fell directly on to a metal bed rib cage first two weeks ago and even though my ribs still hurt like hell I haven't even manged a bruise. I heal normally and haven't been sick all year while my wife has been 5 times.

I am going to tell them when I call what I did. I have no intentions on going into this without them knowing everything about me. It would suck for me to come to CA just to have them say they couldn't do it because I wasn't honest.

I will tell you I told Dr. Kerr about stents being used to open up blood vessels to stop the BBB breach maybe so he knows what I'm doing and he could care less because he would have definitely told me.

Yes I went through chemo but I kid you guys not, it's not like normal chemo. It's one of the safest ways you can have chemo and doctors will tell you that. It should have done 0 to me long term. People first got HiCy in the 70's for SA and they are still alive.

I just want to be clear of one more of the issues. Imagine if I am the first guy to be rebooted and cleared and I recover really quick? I doubt it but who knows?