Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

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

Postby gibbledygook » Thu Mar 05, 2009 2:25 am

Cheer,Marie, all,

I have for the last week or so been measuring my walking against the herbs, horsechestnut and butcher's broom. These are used in chronic venous insufficiency/varicose veins as they are good for tightening up the veins. Horsechestnut prevents leukocyte migration across the endothelium. So far it would seem that these herbs have been better than the dilators, ginkgo and salvia, for my walking. I still have many combinations of the herbs to try but...
I think that in the past, herbs, such as salvia or even broccoli sprouts SEEMED to be beneficial because I could feel their effects on my damaged bits of the CNS within hours of taking them, however they haven't necessarily improved my walking. Now I'm actually testing the herbs against walking ability, I have discovered some rather surprising things!
I have also been sleeping on several pillows to raise my head 6 inches above my feet according to Andrew Fletcher's treatment for varicose veins. So maybe this is why yesterday I spontaneously walked 900meters in Covent Garden/Soho which was a joy. At any rate my legs are feeling much better on a mix of horsechestnut and quercetin than on salvia and broccoli sprouts.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Inclined Bed therapy and MS History

Postby AndrewKFletcher » Thu Mar 05, 2009 4:12 am

Gib.

Inclined Bed Therapy (IBT) works far better when the whole bed is tilted from head to toe. Pillows will help but to experience a real shot in the arm the five degree angle has produced phenomenal results with people who have both relapsing remitting ms and primary and secondary progressive ms, the latter obviously takes longer to begin to show signs of recovery.

As suggested I made contact with a lady with ms, who has been using IBT for 11 years now, she has remained virtually symptom free for all of this time and the only symptoms she has experienced over this time has been the odd bout of optic neuritis, which promptly clears 100% in days.

I also learned that for the last 2 years she has been experimenting with the angle of the bed and lowered it to 4 inches and has not had any relapses during sleeping at the lower angle which is very interesting and indicates that some curative repairs have helped to maintain her circulation. I will ask her if she come to the forum and share her experiences with all of us as I am sure we will all find what she has to say to be fascinating. A month ago, I saw another lady with ms in a shop who had trouble walking when we first met and depended on her cane for support. She did not see my wife and I as I observed her walking without the stick up and down stairs.

I know this all sounds to simple to be of any use, heaven knows, I’ve heard it said enough over the years, yet the 2% of people who test the therapy for themselves have found vast improvements and stability over many years.

There will of course be the exceptional case, where neurological damage has been occurring over many years that may not respond fully, but everyone should to some degree gain significant relief from symptoms using IBT.

It has often been suggested that IBT is of little use because I have no medical qualifications, and indeed Sarah has asked this same question.

This research began when working on an irrigation project, trying to solve an age old problem of salt soil build up in arid areas, due to high evaporation. This salt crust on the surface of the soil led to a question as to what the trees were doing with these salts as wherever trees were present, the salt on the soil was not. That was the beginning over fifteen years ago, that led to not only solving how trees raise water to great heights by using gravity rather than struggling against it, but led to a big question about our own physiology and how we too use gravity to assist circulation rather than struggling against it as erroneously believed in the annals of medical literature.

IBT was born out of a curiosity as to what if anything would happen if we abandoned sleeping flat, a practice the whole human population does without question and without any scientifically controlled study to test it’s efficacy.

Within 4 weeks 2 people who had varicose veins, my wife being the first and a nurse called Stephanie the second case both revealed that the pressure inside the veins had reduced causing the swollen veins to become normal veins. My wife had hers for 16 years following the birth of our eldest son. So a spontaneous recovery in 2 out of 2 cases looked highly unlikely. But I needed more and more cases in order to prove one way or another that gravity was indeed a beneficial influence on the circulation of all living organisms. So my mum eventually tilted her bed along with a few more people and at the time, I was focused on varicose veins only, but then several people with varicose veins who also had oedema (tissue fluid retention in lower limbs) began to report that the oedema was dramatically vanishing as the veins become less swollen. And this to me at least was a logical observation as the oedema was caused because the pressure inside the veins and the lymphatic system was greater than the pressure inside the skin and muscle tissue so migration of fluids should follow the path of least resistance, just like a stream follows the path to the ocean.

But when my mother called after 4 weeks of IBT to inform me that not only had her veins and oedema improved but that she, unbeknown to me had suffered for 10 years of being unable to move her toes and ankle and was saying she could now move them and was doing so while on the phone, left me intrigued as to why the nervous system should be responding along with the main circulation. A week or so later she called again to say that sensitivity on the same leg had returned.

Now, I needed to understand more about human and animal physiology so embarked on a huge absorption of information from books, nursing manuals, physiology books, medical history books to find a neurological condition that might respond to IBT based only on my mothers initial reporting. MS looked a likely candidate, so I asked friends in Paignton if they knew anyone who had MS. Again logical to me at least. The local cake shop told me of a man called Roger Kirk who has possibly the worst case of MS they knew of and could certainly use some help as he in a bad way and had been in a wheelchair for many years. When I made an appointment to see Roger after explaining exactly what I’ve just shared with you here, he instantly understood that I was not some barmy escapee from the local asylum because like myself he had an engineering background. After our initial meeting Roger agreed to sleep on a slope to see what if anything would happen. Well, glad to say it did happen and Roger and I became great friends for many years and I visited him regularly to learn of more and more subtle improvements and some set backs that appeared to be humidity related.

Roger came with me to give a lecture at the local MS Society Chapter in Kingskerswell. The lecture was at a hall in Kingsteignton and formed a small part of their usual meeting. Nevertheless a very small group of people with ms did take notice, while the vast majority of people exercised their right to remain ignorant.

The small group of open minded people with ms no longer attended the meetings and gradually over the months kept feeding me reports of often unprecedented improvements, reflecting Roger’s reports to perfection. I was so excited for everyone that I contacted two MS charities and arranged a meeting to inform them about what was happening to these people in Devon. I paid for myself and 2 others to travel to meet the MS Society, who said a doctor and researchers would be there to hear what we had to say. On arrival no one knew we were coming and the only person there who could hear us was a telephonist who had little knowledge of human physiology.

Off to the next charity in Essex. The Multiple Sclerosis Resource Centre to meet John Simkins and his associate. This proved more fruitful and we were told that they were not surprised that the MS Society had failed us. And to not worry as they would take on board these impressive findings and would help us in any way they could, eventually agreeing to provide an independent assessment of the small group of people with ms who had taken part in the pilot ms study.

This report was titled: Raised Bed Survey http://curezone.com/upload/Members/New0 ... SURVEY.rtf


This eventually involving me being granted access to the Torbay Hospital Medical Research database, where I spent many hours researching looking for clues about ms and finding links to other medical conditions that might respond also to IBT. This was long before I knew there was an Internet back in 1995. Here I learned more about MS and Parkinson’s Disease.

Nothing much happened with the medical profession or the charities that had promised so much. In fact, I have been let down by so many people working in the health industry and charity world that I have lost count. So many promises broken I have little respect left for the majority of people that have the plaques on the wall and the white coats, whose get out clause was it could have happened anyway due to the unpredictability of multiple sclerosis. But there are a few people who remain friends and who too struggle against the people who prefer the status quo, rather than rocking the boat to advance our understanding of science. I have won the support of professors, doctors, surgeons, nurses and scientists around the world and not because I have a degree but because I have discovered and specialised in something that is worth investigating for 15 years and never given up, continuing only because it was and is still the right thing to do!

Andrew K Fletcher
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Postby Loobie » Thu Mar 05, 2009 4:42 am

Ignore your critics. If you believe in something, there will be many, so if you feel strongly about what you're doing, then poo poo on them unless they can just flat out show you how you're wrong; which obviously has not happened. Nothing groundbreaking could have ever occured if all we did was listen to critics.

There is one job that I have alwasy described as being the easiest job in the world: a critic.
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Postby cheerleader » Thu Mar 05, 2009 8:17 am

gibbledygook wrote:I have discovered some rather surprising things!
I have also been sleeping on several pillows to raise my head 6 inches above my feet according to Andrew Fletcher's treatment for varicose veins. So maybe this is why yesterday I spontaneously walked 900meters in Covent Garden/Soho which was a joy. At any rate my legs are feeling much better on a mix of horsechestnut and quercetin than on salvia and broccoli sprouts.

Alex, I'm so glad that you got up and walked in town! And that you are honing in on a program that helps you.
I have won the support of professors, doctors, surgeons, nurses and scientists around the world and not because I have a degree but because I have discovered and specialised in something that is worth investigating for 15 years and never given up, continuing only because it was and is still the right thing to do!

And Andrew, I admire your tenacity in spreading your ideas for healing.

This is the power of the internet, folks! It doesn't mean we'll always agree, but at least the information is available for us to read, compare notes, and try at home. I can't even imagine what I'd be doing for my husband if I didn't have this community of minds and hearts to turn to! My local library has a few books on MS, but I would have never read Dr. Zamboni's research, or found the most recent supplement and diet information, or any of the recent molecular studies on the endothelium. Or, most importantly, met so many inspiring individuals...
Keep it coming!
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Thu Mar 05, 2009 9:13 am

Hi Sou
Some of them are poisonous even for bacteria. Could immune suppressants and antibiotics be the two sides of the same coin? Could all this has something to do with the cause of the stenoses?


Well if we want to think way ouside the box, I have suspected for some time that these agents like revimmune help MS for reasons that are unrelated to autoimmunity.

That is because I am BIASED against the atuoimmune model. I admit that up font before engaing in what is to me fun speculation, remembering my bias....

I also have wondered about the fact that some chemo agents have some properties that could make them antiinfective. Aside from the cell division issue, there is also the vector issue: b cells hold ebv for life and are wiped out with hicy, and also other things like rituxan and campath.

Macrophaes and monocytes are also wiped out and are vectors for chlamydia pneumoniae, which is a germ that has been found in MS brains repeatedly and is an "obligate intracellular pathogen of eukaryotic cells" which means it has to live in cells that have a nucleus of some living creature. They cant' make their own food and stuff, so they get into the person and take over some of their cells, especially immune cells. There they are invisible to the immune system and in fact hamper the immune fucntion because the cells that have these in them are "zombie" cells.

But hicy wipes out all of the monocytes and macrophages. I wonder also if it is at all toxic to the suddenly homeless CPn and ebv wandering around in the body after such a treatment. The fact of ebv lymhoproliferative disorder after chemo suggests these would not be for ebv, but I don't know that. I couldn't find any references to support the idea that cytoxan is directly harmful to ebv or cpn, It may be that some forms of chemo are more toxic to germs than others. But the loss of those vectors is not insignificant.

I have wondered also if it might be shown that people who do chemo type treatments and also need a lot of antibiotics afterwards (spiked a fever for example) or antivirals (got a cold sore for example) might do better long term with their chemo MS cure than those who did not use those things. Just curiosity there.

Another whole angle is that chemo including cytoxan results in anemia. Anemia prevents EAE because part of the inflammatory reaction in the lesions is due to iron leaking into the area.

The question gets really interesting if you think about the angle of stenoses. Chlamydia pneumoniae is always present in atherosclerotic plaques of arteries. I t has been implicated for a long time in the cardiac field, but no one has even been able to prove beyond a doubt that they "cause" these plaques and are not just something that happens by after the fact.

But if you go with the idea that CPn causes these plaques (an assumption) then it is not at all hard to imagine that such a germ might cause the stenoses in the jugular vein that Zamboni is noticing.

That is a really speculative leap because it is a long way scientifically from "we see CPn here in all atherosclerotic plaques" to "CPn caused venous stenoses".

That's my speculation along those lines Sou........what do you htink?
mare
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Postby sou » Thu Mar 05, 2009 4:26 pm

Hi mrhodes.

Your points are very interesting, indeed. I mostly agree with your thoughts.

I am curious about the stuff that blocked the veins. Is it internal or external? It could be both, varying from person to person. If it is internal, it could very well be that cpn or some other germ caused it. If it is external, things are complicated, but correcting it is far easier.

When taking chemo for cancer, it is usually combined with drugs that protect the endothelium. This is not the case with MS, where the dose is relatively low. But chemo could have a minor "unclogging" effect on the vessels, additionally to killing possible hosts (or carriers) of this possible virus.

Interferon beta makes cells much harder for viruses to penetrate. Some genetic predisposition could make cells more permeable.

All these are thoughts that, most possibly, are based nowhere. But it is fun discussing them. :-) Nevertheless, I believe that they will prove to have some traces of the "MS Truth".

Thanks,

sou
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Postby mrhodes40 » Thu Mar 05, 2009 4:56 pm

Is it internal or external? It could be both, varying from person to person. If it is internal, it could very well be that cpn or some other germ caused it. If it is external, things are complicated, but correcting it is far easier.

Interesting, I am too limited in my thinking what external causes might make stenoses? I'm very curious

But chemo could have a minor "unclogging" effect on the vessels, additionally to killing possible hosts (or carriers) of this possible virus.
That is an interesting thought I have no reference to support it though it makes sense this way, chemo is very hard on endothelium and mucosa for example everyone whose been through chemo knows about that "peeled mouth" thing that happpens as the tissue turns over at an alarming rate creating mouth sores galore. You are saying that the endothelium of the vessels is likewise turning over at a rapid rate and thus any plaques etc may get ousted in the process? Interesting idea.
But it is fun discussing them.

me too :D
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Postby mrhodes40 » Thu Mar 05, 2009 5:01 pm

Gibbles, Way to go on the long walk! nearly a half mile by US standards there huh? That's a long walk.

I have never tried horse chestnut but you've been doing that one for while now, I may give it a try on your recommend there. I didn't do so well on cayenne. Stopped using so much curcumin as I was I ought ot get back to that. I do that; go in circles, so on one for a while then shift off it to something else then say to self "why did I stop that one?" :lol:

You've done so much with the supplements and venous stasis ulcers, have you seen a connection to vitamin d in your travels there? I couldn't find one in a quick look but bet its there somewhere.
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Postby sou » Thu Mar 05, 2009 7:12 pm

Hi.

Internal means that something inside the vessel is blocking the way. External means that something outside the vessel is pushing it and makes it narrow. This can be anything varying from a tumor nearby or your finger when feeling the heartbeat at the base of the jugg.

The cells of the endothelium don't divide rapidly. Chemo must have some other effect on them. Perhaps osmotic imbalance, pH alterations etc. I must look up some pharmacology textbook.

sou
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Postby gibbledygook » Fri Mar 06, 2009 6:26 am

Marie,

I've been taking 5000 iu of vitamin d for years but have never noticed any effect from taking it in the same way that within hours I notice effects from curcumin, scutellaria baicalensis, ginkgo, salvia, broccoli sprouts, horsechestnut, butcher's broom or quercetin. These herbs have definite and noticeable effects on my damaged CNS for me. Now not all of these herbs are always good for me to take. However I always take curcumin, scutellaria baicalensis, capsaicin. What I am only just now learning is that horsechestnut and butcher's broom may be better to take with the dilators salvia/ginkgo/quercetin than the dilators alone. When I look at some of the herbal remedies sold for varicose veins I often see both horsechestnut and ginkgo combined. I have also come to realise that the dilators ginkgo, salvia, broccoli sprouts, quercetin should be minimalised after alcohol. I guess that this is because alcohol already dilates the vessels. Dilation is associated with relapse. I believe the lesions are upstream of the stenoses, ie where the dilated parts of the vessels are. I have tried excessive quantities of dilating herbs to reduce the stenoses but have found that this makes my walking worse.....Superoxide dismutase which is a major dilator causes relapses in me. I am now doing the opposite with much much better results...horsechestnut and butcher's broom increase venous tone and reduce vessel permeability....although they are vasoconstrictive...but perhaps we need to worry more about the dilated bits than the stenoses...

Perhaps it is my inclined bed! I have, Andrew, piles of firm pillows which are arranged into a noticeable incline with four pillows under my head, three under my shoulders, two under my lower back/bottom and none from my thighs to my feet. This is a great form of comfortable incline!
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Inclined Bed Therapy

Postby AndrewKFletcher » Fri Mar 06, 2009 7:22 am

The easiest way to test which is bringing about the improvements in walking is to either postpone the supplements or put the bed flat again for a short period of say 2 days to see if it is IBT that is helping.

Please, pretty please with knobs on keep a diary and please incline the whole bed, rather than sleeping with your legs flat. Then you will certainly notice a difference.

Andrew
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Postby gibbledygook » Fri Mar 06, 2009 7:36 am

Hi Andrew,

I actually, possibly erroneously, believe that my legs are also inclined because I am lifted up in the bottom area by 2 firm pillows. The legs are definitely on a downward angle. Unfortunately my bed and room configuration militate against using wooden blocks, as does my husband!! When I look at the bed now I can see a definite slope from the pillow arrangement. This is probably the best I can do for now. :)
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby mrhodes40 » Fri Mar 06, 2009 9:57 am

I want to add something to this thread related to temperature regulation in MSers because I've been thinking about it a lot.

MSers are all aware of issues getting overheated, we don't cope well. Though many people very early in the disease do not notice this--I sure didn't for the first few years. There are a number of ways people keep cool but part of it has to do with circulation. Your face flushes and looks red in the heat for exmple because you are dilating your blood vessels close to the skin to release some heat. Sweat cools the skin and lowers temperatures overall allowing this heat exchange. MSers have to get to a higher temperature before they start to sweat, and we start shivering at a loser temperature. Our thermoreulatory systems are a little messed up.

And when you talk about he brain specifically and cooling, the venous system in the head is important. From
HERE

Vascular arrangements allowing a bulky transfer of venous blood from the skin of the head and from nasal and paranasal mucous membranes to the dura mater provide an excellent anatomical basis for the convection process of cooling, caused by evaporation of sweat or mucus----snip---The possibility of spinal cord and spinal ganglia cooling by temperature convection via venous blood — cooled in the venous networks of the skin of the backflowing through numerous anastomoses to the external and internal vertebral plexuses and, finally, into the vascular bed of the spinal dura is discussed on the basis of anatomical facts.


and another found HERE
blood flowing in the emissary veins (vena emissaria mastoidea and v. e. partietalis) was recorded in human subjects during moderate hyperthermia (note hyperthermia means overheating-mr) and hypothermia---snip---These results support the hypothesis of selective brain cooling in hyperthermic humans by offering a possible mechanism


The second paper is specifically focused on how the brain itself is cooled using a small group of veins in the head. The brain uses an immense amount of energy and so it produces a lot of heat, the question of how specifically the brain is cooled is more than academic: a very overheated brain can be damaged.

Now, Dr Zamboni has discovered that we have some kind of venous reflux slowing venous drainage by allowing bi directioal flow instead of an orderly drainage away from the brain. Other authors have shown over all slowed transit time and cerebral flow that demonstrates a sluggish system.

The two ideas together may explain some of the heat issues in MS patients. We are not cooling the brain as we should if healthy because the venous drainage is not taking the heat away as it would in a normal person.

Warm nerves function less well on anyone; if we regain the ability to cool our heads properly by restoring venous drainage, that will be huge.

For many of us such a small difference would make a big difference.
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Postby Loobie » Fri Mar 06, 2009 10:59 am

I have been affected by heat from Day 1. Look up Uthoff's symtpom and that's how I was diagnosed. Heat still does affect me, but I must say, I now will be uncomfortably warm before I will be uncomfortably cold. This is a big change in my disease. I used to go outside in the middle of winter to try and "get my vision back". Now I can't deal with the cold. I start shivering and I can't even speak sometimes. So mine has kind of flipped. I still can't take extreme heat, but now the cold is worse on my MS. I stiffen up like a 2x4.
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Postby cheerleader » Fri Mar 06, 2009 11:29 am

Huge Lightbulb moment. GREAT CONNECTION, Marie! Of course, the brain stays cool thru the venous network...why vascular insufficiency would compound temperature regulation problems in MSers. I bought Jeff a "cooling hat" (has a ring of gel inside that stays cold when wet) to wear in the summer. Helps him on hot days. Gives new meaning to the term "hot head!"

The major source of heat for endotherms is the metabolism of their internal organs. Over two-thirds of the heat generated in a resting human is created by the organs of the thoracic and abdominal cavities and the brain (which contributes 16% of the total — about the same as all our skeletal muscles when they are at rest).

The shifting of blood flow as needed to maintain homeothermy is controlled by temperature receptors in the hypothalamus of the brain. One set of receptors here responds to small (0.01°C) increases in the temperature of the blood. When triggered, all the activities by which the body cools itself shunting blood vessels to the skin and extremities sweating, etc. are brought into play. It is this center that enables us to maintain a constant body temperature (homeothermy) during periods of extreme exertion or in hot surroundings.

link
Lew...your reaction to cold is the flip side of the coin. Your hypothalamus is overreacting to extremes in hot or cold...my guess is it's due to venous insufficiency.

A second region of the hypothalamus triggers warming responses:
shunting blood away from the skin and extremities and shivering when the body becomes chilled.


So there's more to it....Hormones get into our blood circulation via venous drainage thru the internal jugular vein....the pituitary and hypothalmus rely on venous drainage to get hormonal messages into our bodies. If there is venous insufficiency, the HPA axis is thrown off!!!! THe messages come in, but the hormones cannot get out into the body sufficiently. That means circadian rhythms, temperature, hormones, corticosteroid response to inflammation are not regulated... all the problems MSers have!!!
This would explain adrenal/pituitary/hormonal imbalances in MSers. If there is blockage, more than just cerebral blood is not reaching the rest of the body. The hormones are being held up, too! wow.
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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