Something I am Trying: Possible Non surgical CCSVI Treatment

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

Something I am Trying: Possible Non surgical CCSVI Treatment

Postby japentz » Tue Jan 12, 2010 6:56 pm

NOTE: I do not condone the use of beta blockers due to possible bad coughing side effects. I AM interested in hearing from people who also have high blood pressure and any effects that ace inhibitor or Angiotensin Receptor Blockers (ARBs) might have on their MS if they take them
((Correction above and below, Lisinopril is an ACE Inhibitor, I mistakenly typed beta blocker. :) I appreciate people's correction on that. :) ))


Hello all,

I am new here. I am glad to finally find an intelligent, thoughtful and informative MS community. I was trying to start a Journal on this (so far its not working.)

I live in Baltimore Maryland (well north of it). I was diagnosed with Relapsing Remitting MS in July of 2008. I am 46 years old. I had been exhibiting symptoms for about 2 or 3 years prior.

I had read an article by Bruce Goldman, a journalist for the Stanford School of Medicine regarding Dr. Lawrence Steinman's research which involved giving mice with and MS like disease, the ace inhibitor Lisinopril. Ace Inhibitors (as you may know) are medication for high blood pressure. The mice walked again.

I do have high blood pressure, and a rapid pulse. I was prescribe Avonex, which quite bluntly, is from hell. I felt terrible and it was not helping. In fear of PML, I did not wish to use Tsabri. I am currently using Copaxone (which at least does not make me feel sick, but does not really help either, that I can tell).

Based on this article I asked my regular doctor, internal medicine specialist, if I could try Lisinopril. (My neurologist was very negative on it, and got mad when I asked about current research. I felt he really is not up on MS research at all.)

I started Lisinopril, and within two days my 'ataxia' almost went away. I could curl the toes in my right foot and bend my ankle up again.

I contacted Bruce Goldman regarding my experience and he put me in touch with the research department. Bear with me . .this has to do with CCSVI.

This is the article published by Bruce Goldman:
http://www.eurekalert.org/pub_releases/ ... 081209.php

I wrote to them and they were very interested in what I was doing. Unfortunately, ace inhibitors such as Lisinopril, have a bad side effect of a HORRIBLE dry cough for a lot of people. I was one of them. I had to go off of it.

Researchers at Stanford were kind enough to work with me in communicating with Dr. Kimmel (internal medicine). I was sent their research paper on this along with some basic information. I did not understand this paper. I presented the correspondence and this research paper to Dr. Kimmel.

Honestly, I did not know that ace inhibitors worked by somehow relaxing the veins to allow more blood through, making them more pliable i guess. I did not understand the research paper. I just knew it made a mouse walk. I have MS . .I will try anything MS stinks!!

When I came across the Canadian Documentary on Dr. Paolo Zamboni I was amazed and very happy. Something FINALLY clicked as to why the myelin was being destroyed.

I created a web page for Dr. Kimmel with the video and the thread stickied at the top of the CCSVI forum where people were posting what was going on with treatment for CCSVI. I also sent him a hard copy of Zamboni's paper, Dr. Steinman's paper and the thread regarding those who have been treated for CCSVI here (stickied at the forum)

http://www.reallynews.com/zamboni

I then made an appointment with Dr. Kimmel to discuss all of this. He was at first skeptical. But observing the movement of my toes and ankle, he kept an open mind. I think he was very interested in this (especially with concern at my rapid pulse, that there was not another reason for).

We tried another ace inhibitor (Quinopril) with same miserable consistent cough. The per the information provided and suggestion of Dr. Steinman, there was another blood pressure medicine called an Angiotensin Receptor Blocker (ARB) which did the same sort of function on veins but did not cause the cough.

SO I am trying this right now. Guess what? My balance again has somewhat improved. (I am on day 4 of medicine, and it starts to really do its thing in about 10 days).

So I believe Stanford’s researchers are on another angle to this and a medication treatment as opposed to surgery. Some of them are very skeptical about jumping into surgery for this and advised one person died from the procedure and another had to have an open heart operation due to the stent moving to the heart.

I am very lucky and honored to be in this dialog with Stanford. I am hopeful it will eventually lead to other things besides surgery that can be an effective treatment for CCSVI.

So I believe that 'opening up' veins may help. I am interested in hearing others experiences.

(I know ace inhibitors such as Lisinopril or Quinopril may cause bad and harsh coughing. it does for a lot of people (like me). What about ARBS such as Candesartan (which does not cause the cough). Any experiences to share?

Thanks!
Judy
RRMS, Diagnosed July 2008
Baltimore, MD USA
Last edited by japentz on Wed Jan 13, 2010 11:00 am, edited 2 times in total.
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very interesting

Postby leetz » Tue Jan 12, 2010 7:05 pm

would love to know more...maybe you should post in treatment forum as well????
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby japentz » Tue Jan 12, 2010 7:14 pm

Hi Leetz :) nice to meet you. I am hoping for the Doppler scan for you per your other thread. I will keep an eye on that and follow it. I registered for the BNAC thing, but have not received word on it yet. I want to know what my veins look like.

I will check out the treatment forum too.

I want to add, that I have very small veins as noted by many phlebotomists. When trying to get blood, my veins are hard to find and collapse during the blood draw. They give up sometimes and go through my hand.

I am anxious to hear about any other people who are in the situation I am and have taken beta blockers successfully or ARBS.

I will keep a journal (when I can figure out why paragraphs dont work) hee hee.
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Postby cheerleader » Tue Jan 12, 2010 7:35 pm

Hi Judy-
Welcome to the forums.
we've discussed lisinopril on here before:
http://www.thisisms.com/ftopict-7897-lisinopril.html

Sadly, medication will not address a congenital vein malformation. Pharmaceuticals can only do so much. According to vascular surgeons, only surgery can fix an upside down valve, a mangled or crimped vein, a vein clogged with a cyst or split with a septum- and this is what we are seeing for the most part in CCSVI.

It is a shame the neurology dept at Stanford did not want to explore this more before scaring their patients away from being tested for venous malformations. Every patient is different, and some can be helped with medicine, lifestyle or postural changes, but only a vascular doctor can diagnose a venous malformation.

While neurology professor Lawrence Steinman, MD, senior author of the new study, cautioned that extensive clinical trial work is needed to determine if the drug, known as lisinopril, can do in humans what it does in mice, he is excited that "we were able to show that all the targets for lisinopril are there and ready for therapeutic manipulation in the multiple-sclerosis lesions of human patients. Without that, this would be just another intriguing paper about what's possible in the mouse."


I am surprised that the Stanford neurologists are already prescribing this medication without out strict clinical trials!!! I guess they decided the mouse trials were good enough for MS patients.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Something I am Trying: Possible Non surgical CCSVI Treat

Postby euphoniaa » Tue Jan 12, 2010 7:40 pm

japentz wrote:NOTE: I do not condone the use of beta blockers due to possible bad coughing side effects. I AM interested in hearing from people who also have high blood pressure and any effects that betablockers or Angiotensin Receptor Blockers (ARBs) might have on their MS if they take them
Hello all,

I had read an article by Bruce Goldman, a journalist for the Stanford School of Medicine regarding Dr. Lawrence Steinman's research which involved giving mice with and MS like disease, the beta blocker Lisinopril. Beta blockers (as you may know) are medication for high blood pressure. The mice walked again.

Thanks!
Judy
RRMS, Diagnosed July 2008
Baltimore, MD USA


Hi Judy,

I'm glad you found the forum and it sounds like you have a lot to contribute. But...I have to make a correction here - Lisinopril is NOT a beta blocker at all. It's an ACE inhibitor. http://en.wikipedia.org/wiki/Lisinopril

I'll add a link to a thread in the "Drug Pipeline" forum where I posted some of my experiences and also gathered links to ALL the lisinopril threads together - ones where I described the horrible cough.
http://www.thisisms.com/ftopict-7897.html

I've been taking a beta blocker for 20-25 years and managing okay with it, until my doc added an ACE inhibitor (lisinopril), which brought the cough, which basically made me more miserable than MS. :)

I've also had intolerable side effects from benicar and a calcium channel blocker - that I'm finally weaning myself off of this week, because I'd had enough. You might want to post your experience in the lisinopril thread and maybe you'll get more response there. But...lisinopril isn't a beta blocker. :)

Good luck to you!
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby japentz » Tue Jan 12, 2010 7:49 pm

hello,
I want to make clear Stanford is NOT prescribing anything. Nor doing anything without clinical trials. This has only been done on mice and I took it upon myself to try this. I live on the east coast. No one at stanford has seen me as a patient.

They were interested in the positive effect Lisinopril had on me. However i got the cough. So had to discontinue it :) I was incorrect . .see what MS does? It is an Ace Inhibitor. :) sorry for the brain freeze. :)

I wish to make sure everyone knows its me doing this, and my own personal experiment. I have high blood pressure.

I did have positive effects . .but i think that kind of backs up the ccsvi theory.

I am using an ARB now . .just started. So as I said, I am not advocating Lisinopril. The cough is wretched and miserable. I just quit lisinopril immediately I was already using HCT.
Last edited by japentz on Tue Jan 12, 2010 7:52 pm, edited 1 time in total.
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Postby ozarkcanoer » Tue Jan 12, 2010 7:51 pm

Hi Judy !! I'm glad you created a post on this subject. Open discussion on all these issues is good for all of us. And your kitten is really cute !!!

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Postby euphoniaa » Tue Jan 12, 2010 8:05 pm

P.S.

I'm going to add a quote from one of my posts in the other lisinopril thread, because it explains how they can NOW tell which type of BP med your body needs instead of taking a guess.

A quote from me:

And before everyone runs out to ask for the "... inexpensive, safe pharmaceuticals used by millions worldwide..." they might want to consider the possibility that it may be contraindicated in your particular medical case and screwing around with your BP may be dangerous for you.

Although the treatment of high blood pressure has generally been a hit/miss/tryanotherdrug/miss/tryanotherdrug thing in the past (kinda like treating MS), now there's a machine that can tell them quickly where your problem lies and choose the best med for it - the Bio-Z machine. For example, it told them that the beta blocker I'd been taking was doing its job in that area and that my fluids were fine and I don't need to add a diuretic. It also said that I DO need to add something like an ACE inhibitor, but the side effects have prevented me from taking one.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: Something I am Trying: Possible Non surgical CCSVI Treat

Postby CureOrBust » Wed Jan 13, 2010 12:59 am

japentz wrote:I had read an article by Bruce Goldman, a journalist for the Stanford School of Medicine regarding Dr. Lawrence Steinman's research which involved giving mice with and MS like disease, the ace inhibitor Lisinopril. Beta blockers (as you may know) are medication for high blood pressure. The mice walked again.
So I believe that 'opening up' veins may help. I am interested in hearing others experiences.
Logically, the mouse walking again, would have nothing to do with Lisinopril helping CCSVI, as current "mice with an MS like disease" have nothing to do with human MS (if you go by CCSVI), its EAE which is an Auto-immune condition.

However, that does not mean it wont help MS via some other mode of action.

When you stopped using Lisinopril, did the positive effects fade? when you switched, did your ataxia abate again (if it did come back)?
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Postby japentz » Wed Jan 13, 2010 1:29 am

The ataxia came back, pretty much and continued to be a bother. I remained able to curl the toes of my right foot, but again experienced the drop foot.

I can say, for whatever reason (aside from miserable coughing), there was an almost immediate difference within 2 days after I started taking Lisinopril. At the time, I will be honest, i did not understand how the drug worked.

But I can tell you, for the first time since diagnosed, my balance was very much noticeabley better and I was thrilled to feel the bumps of the linolium under my bare feet. Best of all I could bend forward without pitching over and easily pick up my kitten, hands free. Such an action prior would have caused me to have to hang onto something while I bent over.

For the first time, I felt hope. I was coughing badly. But then I posted to another website's forum, everyone jumped on the coughing in Lisinopril and why it was horrible for them. I just thought i had a bad sinus infection or allergies. Then, looked up that side effect.

I really at least for myself am truthful in how it affected me. If I did not cough so horribley, I wished I knew what further improvements might have happened. I was truly bummed. I was on it for 4 days and had to discontinue it.

As my internal medicine doctor said "you are not a mouse.". I know. And I am only a little over a year in knowing I have MS. I'm not really an old hand at this, nor do I claim to have any special knowledge. Searching for knowledge and intelligent people is why I came here.

I am taking now something called Avapro (an arb) which I started 4 days ago. Honestly, I have gotten some of my balance back again, but its been slower than the lisinopril or quinapril was. Although not fun, I stepped on something sharp with my right foot. I was happy i could feel it so fully.

I have only my common sense and logic that says both Ace Inhibitors and ARBS help blood flow and circulation so therefore its only my logic (I'm probably really simple minded), that it was helping blood get through the clogged up or collapsed jungulars if I have them.

I am not a doctor, nor would I pretend knowledge nor am saying "this is the cure." I don't believe my veins are less collapsed (if CCSVI is the case with me), I do assess that something is helping me (even in the most minute way), in regaining some of my balance and feeling in my foot.

CCSVI from the MRI pictures I have seen in these forums shows the veins closing on people at different places. I hypothesize (ONLY a thought), that perhaps in my case it is helping some blood to drain properly should CCSVI be a reality in my case, where it might not do so well in another's case.

The improvement has not been extreme but very noticeable and it seems to coincide, at least with me, when took these medicines.

With AvaPro, improvement appears to be more subtle than the ace inhibitors.
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Postby japentz » Wed Jan 13, 2010 1:32 am

And on mice, (noob here). Why do they do all these tests on mice to find out how things might effect humans?

I am not a mouse . . I am not a mouse :D I swear it, I'm not a mouse! :lol:
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Postby CureOrBust » Wed Jan 13, 2010 4:07 am

the mouse doth protest too much, methinks. And the picture appears to be over compensation
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Postby japentz » Wed Jan 13, 2010 11:26 am

(( LOL thanks CureOrBust. that brought a welcome smile))

I posted the information to the Lisinopril thread. I have a lot to read, but what I found so far is very interesting.

I'm glad I found this place. :)
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