This Is MS Multiple Sclerosis Community: Knowledge & Support

Welcome to the world's leading forum on Multiple Sclerosis research, support, and knowledge. For over 10 years, This is MS has provided an unbiased community dedicated to Multiple Sclerosis patients, caregivers, and affected loved ones.
It is currently Sat May 18, 2013 8:12 pm

View unanswered posts | View active topics


Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

All times are UTC - 8 hours [ DST ]



Post new topic Reply to topic  Page 2 of 3
  [ 36 posts ]  Go to page Previous  1, 2, 3  Next
  Print view Previous topic | Next topic 
Author Message
CNClear
 Post subject:
PostPosted: Mon Dec 14, 2009 4:55 pm 
Offline
Family Member
User avatar

Joined: Fri Aug 28, 2009 3:00 pm
Posts: 96
Location: Near Atlanta, GA
Guess I should've figured that out for myself...lol...but thanks for giving me the shortcut...

I emailed your herb lady to ask about the UTI herbal treatment. I told her that you referred me, but that I couldn't give her a name, just Judipom...from the TIMS board...

That would sure be a big help! I take profilactic antibiotics everyday and cranberry capsules, but I would really like to get off of as many pharmaceuticals as I can...what worries me is the long term effects of drug interactions, from all the meds I take now...

I love to hear the post stenters say they don't have to take Baclofen or Requip or Prozac any longer! I want to be able to say that, too!

Lisa
Top
 Profile  
 
judipom
 Post subject:
PostPosted: Mon Dec 14, 2009 10:13 pm 
Offline
Family Member
User avatar

Joined: Tue Nov 24, 2009 4:00 pm
Posts: 68
Location: Chapel Hill, NC
Lisa--Suki is awesome. She helped me tremendously on a health issue 13 years ago, and like I said my brother swears by it. It's Judi Chatowsky by the way, but I bet she'll know who you mean. I hope it works!!! Judi

_________________
RRMS Diagnosed 1997
My house burned down, now I can see the moon.
Top
 Profile  
 
mrsilkykat
 Post subject:
PostPosted: Mon Dec 14, 2009 10:28 pm 
Offline
Family Member
User avatar

Joined: Tue Dec 01, 2009 4:00 pm
Posts: 67
Location: Berkeley, CA
Judi--I've talked to my acupuncturist about CCSVI. He is a great guy but didn't seem to think acupuncture would work on the veins. He said Acu is great for functional issues--pain,energy--but not good on sturctural. Were you able to tell your acupuncturist where your veins are blocked? Does she think she can relieve the blockage with acupuncture? What is she trying?

Thanks.
Top
 Profile  
 
judipom
 Post subject:
PostPosted: Mon Dec 14, 2009 10:43 pm 
Offline
Family Member
User avatar

Joined: Tue Nov 24, 2009 4:00 pm
Posts: 68
Location: Chapel Hill, NC
Hmmm...Very Interesting. Well, first, I emailed a local acupuncturist and told him about the CCSVI research. He replied that acupuncture had been proven in clinical trials to affect hemodynamics--the flow of blood. I didn't actually go to him, but to an acupuncturist who I had seen 2 years ago, and who runs an affordable clinic. Again,I told her about the research, it made sense to her and she did a treatment. I don't know exactly what the points were but I did have some needles in my neck. I go back on Wed. Where are you located? It may be possible that our acupuncturists could email?? Her name is Carmela Mager and we are in Chapel Hill, NC. She's going to Israel for a while, but if you give me your acupunct. contact info I could at least pass it on to her??? Judi

_________________
RRMS Diagnosed 1997
My house burned down, now I can see the moon.
Top
 Profile  
 
mrsilkykat
 Post subject:
PostPosted: Mon Dec 14, 2009 11:02 pm 
Offline
Family Member
User avatar

Joined: Tue Dec 01, 2009 4:00 pm
Posts: 67
Location: Berkeley, CA
Hi Judi--I'm in Berkeley CA. My acupuncturist is John Neiters in Alameda. His phone is 510/814-6900. I'm sure he has email. I'll get it from him. This would be great if they can talk. What is Dr. Mager's phone number? They may be able to talk before she leaves. Thanks.
Kat
Top
 Profile  
 
judipom
 Post subject:
PostPosted: Mon Dec 14, 2009 11:17 pm 
Offline
Family Member
User avatar

Joined: Tue Nov 24, 2009 4:00 pm
Posts: 68
Location: Chapel Hill, NC
Kat-- Carmela's number is 919-933-4151, her web site is www.acupuncturehealingcenter.org. Andrew is the other practitioner in the practice. He is going to treat me while Carmela's away.

No wonder I have fatigue---I'm up all night on thisisms. Let me know how it goes. Judi

_________________
RRMS Diagnosed 1997
My house burned down, now I can see the moon.
Top
 Profile  
 
mrsilkykat
 Post subject:
PostPosted: Mon Dec 14, 2009 11:22 pm 
Offline
Family Member
User avatar

Joined: Tue Dec 01, 2009 4:00 pm
Posts: 67
Location: Berkeley, CA
Judi--thanks a lot. Yeah, I hate to get on this site because I can stay on for hours. The time flies. I am going to be a good girl & sign off for the night. It must be 1:00am for you. I am giving myself the week between Christmas & New Year's to read everything. A real treat, since I'm pretty late to this party. I've got a lot of catchiong up to do.
Top
 Profile  
 
mrsilkykat
 Post subject:
PostPosted: Tue Dec 15, 2009 10:51 am 
Offline
Family Member
User avatar

Joined: Tue Dec 01, 2009 4:00 pm
Posts: 67
Location: Berkeley, CA
Judi, My Acu will call yours today (Tuesday 12/15). BTW, if you needs my real name, it's Carolyn.

Glad to be talking with someone who is doing TCM. Is she giving you herbs?
Top
 Profile  
 
AndrewKFletcher
 Post subject:
PostPosted: Tue Dec 15, 2009 12:21 pm 
Offline
Family Elder
User avatar

Joined: Wed Jan 14, 2009 4:00 pm
Posts: 757
Location: Paignton, Devon, UK
IbRiz wrote:
Hi judi and johnson

Have any of you tried Inclined Bed Therapy (IBT) ? My bed has been inclined for about a month - and it is really making a huge difference for me! The dizziness and headaches in the mornings have gone, and I have had no new MS stuff since I started.

I was diagnosed with CCSVI at dr Simka's a week ago, and when you think of it - IBT really makes sense in the CCSVI theory. I have a blocked jugular, and so if I am sleeping inclined - the azygous veines are helping
me draining the blood from my brain.

ALL of my MS-badness has presented itself in the morning - when waking up (when I was sleeping on a flat bed that is). I am convinced this is due to my blocked veine making it difficult for the blood to return from my brain.

You can read all about IBT here: http://www.thisisms.com/ftopict-8535-inclined.html+bed+therapy

christian


Hi Christian

Thanks for you positive post, it will help a few others no doubt to dip their toe into the I.T.

If you could copy and paste your posts into the main inclined therapy thread it will help a great deal for people to learn of yet another positive response.

Andrew
Top
 Profile  
 
judipom
 Post subject:
PostPosted: Tue Dec 15, 2009 1:35 pm 
Offline
Family Member
User avatar

Joined: Tue Nov 24, 2009 4:00 pm
Posts: 68
Location: Chapel Hill, NC
I'me doing it all. Inclined bed, acupuncture for neck veins, a topical horse chestnut cream that I apply on my neck and legs, supplements for my veins. I'm heading to Florida for the holidays. It will be interesting to see how I do sleeping flat. Kat--I choose not to do chinese herbs because I don't like not recognizing the names on the bottle. I'm a good old fashioned "what's in your backyard' herbalist. I've been in contact with an excellent herbalist here in Chapel Hill--we have yet to do a consult. I'm also going to talk to an excellent chiropracter I know and see what his take is. I was good today--Just got on site now and it's 3:30 pm. Cheers!!

_________________
RRMS Diagnosed 1997
My house burned down, now I can see the moon.
Top
 Profile  
 
Johnson
 Post subject:
PostPosted: Tue Dec 15, 2009 4:44 pm 
Offline
Family Elder
User avatar

Joined: Tue Dec 01, 2009 4:00 pm
Posts: 979
Location: Ucluluet, BC
Quote:
I'm a good old fashioned "what's in your backyard' herbalist.


That is the optimal way, I think. The medicines that we need are generally found within 10 miles of us. Foods too. For instance, honey ought to be as local as possible because it is made from the plants that are releasing allergens locally.

Drinking raw, local milk is good too - if you drink milk - it's the same deal as with the bees. If you can have your own cow, antibodies to your own ailments often start showing up in the milk. I know a farmer who injected his blood into a milking cow's udder, and she produced colostrum with his own "designed" antibodies. He suggested doing it with my blood, but I wasn't completely comfortable with the ethics of it. Pasteurized milk is dead, and should be avoided.

Beyond all that, it gets too chaotic for me to babble about, with micro-climates, soils, etc.

Sorry if I strayed OT.

_________________
My name is not really Johnson. MSed up since 1993
Top
 Profile  
 
Johnson
 Post subject:
PostPosted: Wed Dec 16, 2009 2:55 am 
Offline
Family Elder
User avatar

Joined: Tue Dec 01, 2009 4:00 pm
Posts: 979
Location: Ucluluet, BC
I just had a reply from my most brilliant Cranio-sacral gal.

This is what she wrote:

Quote:
No, I hadn't heard about the Liberation treatments and MS. I did listen to all of the footage and am blown away. Since your email, I have had one new patient arrive with MS specifically for assessment of her veins. Interestingly, her jugular veins (in the neck) and venous sinuses (in the head) had no motility whatsoever, arteries were marginally better. Interesting, eh?

I can manipulate blood vessels in the body, resolving tensions in the vessel walls and encouraging the return of their motility. But can I unblock veins? I just don't know. I think it depends what is blocking them and I wasn't clear about that from the news pieces. I certainly cannot exert as much force as happens when they perform an angioplasty, but I am willing to try.


I will see her next week, and report. I don't know about force, but she is good.

_________________
My name is not really Johnson. MSed up since 1993
Top
 Profile  
 
judipom
 Post subject:
PostPosted: Wed Dec 16, 2009 6:52 am 
Offline
Family Member
User avatar

Joined: Tue Nov 24, 2009 4:00 pm
Posts: 68
Location: Chapel Hill, NC
Johnson--I have a gorgeous oregano plant that gets covered in honeybees when it blooms (I mean covered). I would love to find that honey--sweet with an oregano tang. You have lots of good info. Judi

_________________
RRMS Diagnosed 1997
My house burned down, now I can see the moon.
Top
 Profile  
 
jay123
 Post subject:
PostPosted: Wed Dec 16, 2009 7:26 am 
Offline
Family Elder
User avatar

Joined: Mon Sep 21, 2009 3:00 pm
Posts: 374
New members - this board has been the best one I have been on for staying 'on topic'. Everybody has a lot of great info but please try to limit this topic to CCSVI (like the acupuncture idea was interesting), and then try to keep each post on the topic of the post.
There are other topics on this forum for nutrition, etc if you want to post.
This is a great board, but lately a lot of our thread in the CCSVI topics have been going everywhere, it's difficult to keep up! But thanks for all the interest!!
I'll post this as a thread too.
Top
 Profile  
 
AndrewKFletcher
 Post subject:
PostPosted: Thu Dec 17, 2009 2:43 am 
Offline
Family Elder
User avatar

Joined: Wed Jan 14, 2009 4:00 pm
Posts: 757
Location: Paignton, Devon, UK
IbRiz wrote:
Judi - good to hear IBT is working for you. I am also feeling better - primarily I can now walk without problems when getting out of bed - before I had to grab on to the wall the first few meters. I'm sorry to hear about your husband....although he doesn't sound so nice.....

With regards to my CSCVI - hmm - I am currently thinking about what to do - it really is not easy. The stenting-business is of course the best - and proven to work, but the concerns about the stent-lifetime is really making me nervous. What happens if the stent breaks? Not really easy to repair it, or replace it.... Ballooning works about 50% of the times - but as cureious says - 50% is better than 0% !! So I think I will try to find someone who will balloon me - preferably here in Denmark.

Johnson: I think you will be pleased with inclining your bed - a lot of people have done so.
Good thing your wífe is okay with it (so was my wife - except she did complain about sliding down a bit). And yes - snoring could be eliminated - at least so I've read (reported by IBT 'users' to Andrew Fletcher - the father of IBT).

christian


Christian thanks for helping to spread the word about I.T.

Showed my wife your post last night. Birthday today, wifes card read To the Daddy of IBT and the new G.P. (grand parent lol):lol:

Made me smile for sure.

Andrew

PS please post your experience and observations in the main threads also so others can find them more easily.

Andrew :D
Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  Page 2 of 3
  [ 36 posts ]  Go to page Previous  1, 2, 3  Next

Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

All times are UTC - 8 hours [ DST ]

Related topics
 Topics   Author   Replies   Views   Last post 
There are no new unread posts for this topic. Are stents in the Azygos as risky as in the neck veins?

adamt

0

955

Sun Apr 04, 2010 10:27 am

adamt View the latest post

There are no new unread posts for this topic. veins of the head and neck--mini anatomy lesson

MS_mama

3

1083

Sat Nov 21, 2009 12:16 pm

ozarkcanoer View the latest post

There are no new unread posts for this topic. Angioplasty of heart VS Angioplasty of Neck veins

[ Go to pageGo to page: 1, 2 ]

GuRu

27

2648

Sun Jun 06, 2010 4:33 pm

GuRu View the latest post

There are no new unread posts for this topic. use of neck MRV in dx CCSVI

eric593

12

2185

Tue Apr 06, 2010 2:49 am

NHE View the latest post

There are no new unread posts for this topic. Neck, RAAS, ADH

clueless

0

946

Sun Feb 26, 2012 4:39 pm

clueless View the latest post

 


Who is online

Users browsing this forum: No registered users

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum

Search for:
Jump to: