Lyme Disease and CCSVI

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

Postby Cece » Fri Aug 05, 2011 8:34 am

Welcome, Danz! I can't respond in detail right now to some of the interesting points you've raised but I want to wish you and your son good luck with upcoming testing. Also did you have any symptoms of CCSVI that predated the Lyme disease? Symptoms of CCSVI would be fatigue, cogfog, weakness, vision issues, tinnitus.

This would be expected if there was congenital vein valve abnormalities. These might then have been made worse by the Lyme or allowed the Lyme easier access to the brain or had weakened the brain environment so that the Lyme was able to do worse things.

If your wife and daughter are faring well but you and your son are not, and your wife and daughter turned out not to have congenital CCSVI but you did and your son had inherited it from you, that would support the idea that these are malformations that are present from birth and might explain why different people have different courses.

It's also devastating to hear of a whole family affected. I hope there are answers for each member of the family.
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Postby Danz » Fri Aug 05, 2011 10:36 am

Very good points are raised. It does seem to be a chicken and egg issue. Which came first? It is hard to say. I have been chasing the lyme issue for 3 1/2 years. Before that it was cfs for 10 years. Before that is was 7 years of docs really having no idea.

The lyme docs have been saying for years that lyme patients need to get rid of infection, but the doc I see now is seeing it differently. He says we all have exposure to many things, but the issue is more how our bodies deal with it. Perhaps the reason my 15 year old (she is female) and I deal with it so poorly is that ccsvi was already there.

It is not possible for me to say whether ccsvi symptoms or lyme symptoms came first, since to me they look the same.
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Postby AlmostClever » Fri Aug 05, 2011 11:02 am

Chicken and the egg...

Funny I had this same exact discussion with my wife today after reading Danz' first post. (Welcome Danz!)

One thought I had was what if Lyme bacteria affected veins somehow as a form of self preservation (by constricting valves and vessels)? Y'know, cutting back the oxygen to areas it inhabited?

My limited search for info uncovered little on this. Maybe some of the more skilled researchers here can help?

I'm not suggesting that Lyme is the cause of all CCSVI or MS cases - just some of them - which might give us the chicken - I mean egg... mercy!
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby Danz » Fri Aug 05, 2011 1:36 pm

One of the docs at the alternative clinic I go to is going to write an article on lyme and ccsvi. It will be interesting to see what he has to say about it.
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Postby jenf » Sat Aug 06, 2011 6:18 am

I was tested for CCSVI (had a venogram done after a suspicious MRV) and I had no stenosis. I had originally been diagnosed with MS, so I thought this may be my answer. When no stenosis was discovered, I began searching elsewhere. Low and behold, I have Lyme coupled with some other intercellular infections (CpN, Mycoplasma Pneumonia, and HHV6). My sister and daughter also have Chronic Lyme but have never been evaluated for CCSVI. My sister did have some circulatory issues, but never was evaluated for CCSVI. My daughter has a blood defect which causes "thick blood". I think that like MS, Lyme can effect circulation. I don't however, think it's the rule.
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RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Avonex - 06/12-06/12

Late Stage Lyme - 12/10
Too many meds to list!!

Remember, today is the tomorrow you worried about yesterday..
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Postby fee001 » Sat Aug 06, 2011 8:10 am

Jen,

Check out following website www.necksecret.com he has a seperate section re lyme and some testimonials of success stories

I believe that a misaligned Atlas causes restricted blood flow in the neck and that causes ccsvi.

His site is well worth a look plus you will find info on cervical spine issues.
hope it helps

www.necksecret.com

Fiona
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Postby AlmostClever » Sat Aug 06, 2011 12:10 pm

fee001 wrote:Jen,

Check out following website www.necksecret.com he has a seperate section re lyme and some testimonials of success stories

I believe that a misaligned Atlas causes restricted blood flow in the neck and that causes ccsvi.

His site is well worth a look plus you will find info on cervical spine issues.
hope it helps

www.necksecret.com

Fiona


Yes, Fiona! I agree the atlas can create issues!

Montel even has this treated and it has been discussed somewhere in here. I know it is a problem for many.

This would seem to support the (my :) ) theory that increased blood flow and oxygen to the brain helps control Lyme.

(It may be me and I'm sure it is, but Dr. Liebell looks too damn young to be my doctor!!! Or I'm just getting too damn old!!! I'm sure he is good at what he does though!!!)
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby fee001 » Sat Aug 06, 2011 12:50 pm

Hi!

But thats what we need young minds looking at things with fresh new eyes. I dont mean to be horrible but older people look at with the same old views that have been ingrained for years and dont look at the bigger picture, they have a mindset and dont deviate from it. And that is dangerous.

But we're not like that our exteriors might be a little worn, but our minds are kicking.

By the way, I have ex in laws living in Houston, also in Branston Texas.
See I might be thousands of miles away, but we have something in common.


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Postby AlmostClever » Sun Aug 07, 2011 10:24 am

So I as thinking about how Bb (Borrelia Burgdorferi affected the bloodvessels of an infected host and found this web-page:

http://autoimmunityresearch.org/lyme-disease/

From it:

"Borrelia also have an affinity for the endothelial cells lining the inside of blood vessels. They attach and infect the endothelial cells of blood vessels and trigger inflammation in these infected blood vessels (vasculitis) wherever they reside in the body. In other words, once the Borrelia infects the endothelial cells, they stimulate vasculitis of the blood vessel. Vasculitis of the nervous system, skin, muscle, tendons, and connective tissue explains much of the
disease and clinical symptoms caused by Borrelia."

The Bb. is cutting blood and oxygen supply off - by design! Is anyone following me on this?

Since most of the CCSVI jugular issues involve the valves, might there be some reason why the tissues of the valves might be more succeptible?

And yes, Bb. can cross the BBB. Nuero-Lyme exists!

(Fee - we're in a terrible heat-wave here! Sorry your relatives are stuck in this hell with me!)
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby Danz » Sun Aug 07, 2011 11:35 am

This is pretty much what my lyme doc told me. The suspicion is infection of the endothelial cells as a cause for ccsvi. CeCe made a good point that possibly my daughter and I both are worse because ccsvi is congenital. But there is also some reason to believe lyme and coinfections can be passed sexually or by vertical transmission (from mother to child). This might explain why my family of four are all diagnosed with lyme even though my daughers are city girls who have have had very little tick exposure.
Another explanation might be that it is not caused by lyme but the coinfections and secondary infections that come with it. Perhaps ms and lyme patients share another infection such as Chlamydia pneumoniae or one of the micoplasmas.
One thing that will make my treatment and my daughter's treatment different from most (if we end up there) is that we would be treating for infection before and after the cccsvi procedure. This is sort of opposite this situation of many with ms who are taking immunosupressive drugs.
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Postby Cece » Sun Aug 07, 2011 12:03 pm

There are valves throughout the cardiovascular system. If lyme disease damages valves, wouldn't it also be equally at risk of damaging these other valves? Is there an increase in the incidence of varicose veins, for example? Or in the heart valves? There could be..
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Postby AlmostClever » Sun Aug 07, 2011 2:05 pm

Cece wrote:There are valves throughout the cardiovascular system. If lyme disease damages valves, wouldn't it also be equally at risk of damaging these other valves? Is there an increase in the incidence of varicose veins, for example? Or in the heart valves? There could be..


I have cold hands and feet as well as a varicose vein (calf) that popped up in the last year. Massage makes 'em warm again. Vein stays, unfortunately!

Also had a bad infection near the ankle last year. Almost lost me leg! Har-de-harrr!

=Poor blood flow in extremities due to what?
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby Danz » Sun Aug 07, 2011 4:34 pm

Good point about the valves. Maybe this is why some ms patients don't respond well. It has occurred to me that it could be a body wide problem. But I think read some where that the liberation procedure can't be performed on the lower body. The valves need to be there to keep the blood from moving downward. Then again, if ccsvi is congenital why would it be limited to a few major veins? I do believe some smaller veins in the head can be effected, including veins that drain the sinus. My daughter and I both have chronic sinus infections (7 sinus surgeries between us). Perhaps this is the answer why.

It looks like we are better at comming up with questions than answers.
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Postby Cece » Sun Aug 07, 2011 5:40 pm

Lol, yes, that is the state of CCSVI right now. More questions than answers. But they're better questions than have been asked in 100+ years of MS research, so it's ok for now. :)

I think CCSVI is limited to these veins because those are the ones that, when blocked, lead to an MS diagnosis and those are the patients presenting for treatment. The jugular and azygous, as well as the renal and iliac in a secondary way and smaller veins like the verts and ascending lumbars, are all essential for cerebrospinal drainage.

We should find out which veins drain the sinuses (the sinus-infection sinuses, not the venous sinuses). I've had chronic sinus infections on my left side only. This was the side of my 99% blocked jugular. My guess is that the air sinuses might be drained by veins that drain into the external jugulars.
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Danz

Postby fee001 » Sun Aug 07, 2011 5:50 pm

Hi

Candida causes sinus problems ..... google sinus and candida or cadida leaky gut, its a common symptom ok


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