This Is MS Multiple Sclerosis Community: Knowledge & Support

I am 53 years young, Happily Married for 29 years with two grown up sons.

I have been researching neurological conditions for 16 years now, following a simple discovery in circulation, which began trying to understand how trees lift water to their leaves without a pump, Little did I know at this time that questioning some erroneous science literature would have such far reaching implications for so many people. Some of you may have read about Inclined Bed Therapy or (IBT) for short. Many of you may not have read about it. I was drawn to your community by the word: Unbiased and hope I have come to the right place to share some information that should prove very interesting in the light of Professor Zamboni's Recent papers, including Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis.

Let me first assure you that I have no products for sale and do not expect or encourage any payment. I mention this because in the past members of other forums have prematurely jumped to the wrong conclusions about myself and my research. Some of those people may even be on this forum. All I ask for is a little patience as this incredible journey unfolds.

Introduction to discovery in Circulation:
http://www3.sympatico.ca/slavek.krepelk ... ceRevw.htm


Andrew

To find more information use the google advanced search engine as shown in the picture.

Choose search within a domain option as shown.
Domain name is: http:www.thisisms.com

Use the search sentence or word search to find posts relating to Inclined Therapy.

Welcome Andrew, I am a little surprised it took you so long to find us, almost insulted.

I think you will find we are pretty open here to ideas that are considered left of centre. Hell, we got the "Insulin Girl", the "Worm Guy" and a whole forum just on antibiotics. "Flaming" is also very rare on this site.

You probably noticed I have recently commenced your IBT therapy. I can not say it has made any noticeable difference thus far.

As you have probably also found, Zamboni has made a significant impact on this site. I myself am scheduled for the doppler tests this coming Monday. It was by searching for other sites references to Zamboni, that I stumbled on your posts in other forums.

so, welcome.

Thank you

RE: Your commencing IBT. Do you have a start date?

1. Have you noticed a change in feeling warm while in bed?
2. Warm hands and warm feet now?
3. A little more energy and waking up a little more refreshed perhaps?

Changes to look for: Increased nail and hair growth. Nails and hair becoming stronger.
Skin and muscle tone changes
Changes in spasm
Increased unfamiliar pain, described as shooting pains not always in the same place. This is important as it frequently follows that some regained function and / or sensitivity is likely within a few weeks.

Remember, IBT is a slow steady process that over a 4 month period has been shown to significantly improve symptoms related to multiple sclerosis.

One question I would like to ask the forum is about varicose veins and / or haemorrhoids being more prevalent in people with MS. This might not seem important right now but will become clearer later. Thinking of adding a poll in the main part of the forum.

Andrew

Hi Andrew...
Welcome to the site. I've read your works and seen the videos. Really fascinating connections you've made between circulation and disease, trees and water. I've been convinced there is a vascular connection to my husband's MS, and wrote up his program- click on highlighted endothelial program below for a downloadable pdf. I'm not a doctor, only an observer in all of this. I explain what lead me down this path in my paper.

My husband was advised by a vascular doc, who had read Zamboni's papers, to raise the head of our bed, to avoid blood pooling in his brain and to aid circulation. That's how I found you and IBT on the internet. We've had the head of the bed up for a month now. It's hard to say how this has affected things, since Jeff had a mini, stress related flare two weeks ago. However, I have noted no snoring and warmer feet (so thanks for that!) He'll be scanned in March.

I would recommend you to the research of Dr. Franz A. Schelling, an Austrian neurologist, who first noticed the distension in cerebral veins of MS patients back in the 70's. He's written papers on his connections between the vascular system and MS lesions. He and Zamboni correspond, and he believes his work is now being confirmed by doppler scans.

This is an exciting time for those of us who are convinced there is a vascular connection to MS...I'm new to it all (only 2 years in), but very hopeful.

All the best,
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Thank you Cheerleader

I did follow Dr. Franz A. Schelling after reading Zamboni's paper, though admittedly briefly.

A long long time ago I wrote my first attempt to explain why tilting a bed was having such a profound effect on people with multiple sclerosis and other neurological conditions. My Paper was first titled: “MS Is Not A Disease” explaining that it was indeed a problem with circulation. This was met with much ferocity on the Internet based groups, almost as if I had spat on their best friend. Nevertheless a group of people who read through what I had written began to see the potential in addressing the circulation / posture connection. We set up a pilot study on what was then a well read message board called “Inside The Web” Almost immediately we began to receive interest from the MS community and our simple Tilt your bed study was underway.

Then as predicted reports of modest improvements began to trickle through from people all over the World. Fantastic I thought, this was easy. Almost too easy. Not being very computer literate in those days, I soldiered on, armed with some impressive pilot study results that were conducted without the Internet, involving the Kingsteignton Branch of the U.K. M.S. Society, following a lecture I gave with the help of the very first person with MS to have tried Inclined Bed Therapy, or IBT as it is now known. Roger Kirk had Primary Progressive MS and was in a very bad way when I first met him. He also had a renal transplant which was long past it’s predicted expiry date and was failing.

Roger by all accounts should not have experienced any remission, yet he did and began to become more independent, noticing a return of bowel and bladder control and sensation and control back to his feet and hands. Spasm had also began to subside and he appeared in the Daily Mail Newspaper photographed when he was able to stand using his wheelchair to steady himself. Roger’s sight eventually improved so that he could sit at the computer for longer than normal and he became very focused on setting up a small printing business that required very long periods sitting in one position. This complicated things further as he was given a very bad cushion and wheelchair that pressed on areas of his skin causing pressure sores, which led to infection and eventually cost him his life, though I suspect his failing kidney played a part too. I have a great deal of respect for Roger Kirk, who was a great friend and also a retired engineer.

Roger came with me to the MS society lecture and helped me to convince a small group of people there to take part in my first attempt at a study. Remember, I was a good mechanical engineer with an interest in science and not a doctor, so could have conducted it better with some professional involvement but alas none was forthcoming despite many attempts and lots of empty promises. Nevertheless a great deal was learned from 10 people with multiple sclerosis, one lady with psoriatic arthritis and 2 people with complete spinal cord injuries who helped me to test how far IBT could help.

These results were compiled in a report by the Multiple Sclerosis Resource Centre MSRC in Essex, conducted By John and Jean Simkins, tilted Raised Bed Survey.
Many promises were made based upon the findings in that report, even if John Simkins admitted he had “softened” the results because they looked almost too incredible to be believed!

A meeting was arranged with both the MS Society and The MSRC. I came to London at my own expense with 2 friends for support on an arranged meeting. On arrival at the MS Society we were told there were no doctors or indeed anyone in authority to talk to us? This was infuriating.

Off we went to the MSRC, who were there at least and they advised us to stay with them, as they had all the right connections to set up a controlled study to reproduce the results that John and Jean Simkins had seen at first hand.

Lots of telephone calls followed and nothing was happening, eventually John Simkins admitted nothing was likely to happen in the foreseeable future and he eventually left the MSRC, replaced by Lawrence. Lawrence called me one day and left me quite bemused. He said; “I am not frightened of you Andrew” and put the phone down? To this day I do knot know what he had in his mind when he said this.

So ignoring the MS charities, who obviously had no interest in seeing my research either proved or disproved, I began talking to Dr Rosey Jones at Bristol. Again lots of empty promises, until I was told by a friend of hers who has MS that I would never be able to set up a study with MS patients! Odd coming from someone who was using IBT and had experienced many positive improvements from it.

By now our online study was baring fruit, with positive results coming in thick and fast. Who needs them I thought, rather smugly, we can show everyone in our online study just how effective IBT really is for helping people with MS.

Then the next bombshell landed when insidetheweb.com closed their service.

I managed to gather the posts from the site but by now, I had become exhausted mentally and grown despondent, particularly as a few individuals on the groups were hell bent on accusing me of every act possible.

And then there were the replies from Academia and the medical profession saying “It could have happened anyway. Don’t you know MS is a relapsing remitting condition. Yet the people I was helping were mostly primary progressive.

So I turned my attention to other conditions that could not as easily be discounted, namely spinal cord injury, Parkinson’s disease, cerebral palsy and other non-neurological conditions including varicose veins and oedema. And it is varicose veins that was the very first condition that was observed to benefit from IBT. Ironically, it now appears that varicose veins returning to normal veins will undoubtedly prove to be very interesting for people with MS now that Zamboni et al have identified swelling in the cerebrospinal veins and a compromised venous return flow. In other words a circulation problem just as I said it was all those years ago.



Andrew

Andrew...
What might be helpful for folks interested in IBT, is for you to post your program on the Regimens section of the Forums. This way, people could see what your program is, and the rationale behind it. You can post any links you might have to outside pages on the internet, as long as they are free.

As Cure said, this is a very open and respectful website. As long as you are not selling a product (see Forum FAQ for the rules) you can explain your concept here to a larger audience of MS patients and caretakers. When a vascular specialist from a well-respected university suggested lifting the head of our bed, I did a search of the web to see if anyone else was prescribing this for cerebrospinal insufficiency, and found you.

We know there is a breech of the blood brain barrier with MS. I believe it is caused by more than a rogue immune system, and that is why I looked to the circulatory system- the endothelium, specifically. Schelling and Zamboni are finding a connection in the venous system, and you have found a connection, as well. Many others are finding the vascular link.

I'm sure it would be near impossible to do a trial on your theory, since there is nothing to "sell" to MS patients. It is as easy as putting some blocks under the bed. No money in that! And certainly no drugs to patent. But don't be disheartened. Thanks to the internet, many like- minded people are finding their way, and helping others. You may get your toes stepped on here, but don't let that stop you!
all the best,
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Its a pity I did not know about this a few years back (3 to 7).

About 7 years back, I awoke one morning, rolled out of bed, placed my right foot on the floor, went to take my second step on my left, and my left leg just COLLAPSED under me and I fell to the floor. I FREAKED out. When I tried to stand up, when I put pressure on my left foot, an unspeakable pain shot up my leg. It obviously collapsed because of this pain, before I consciously was aware of it.

I then noticed that on my front left shin, I had a huge vein sticking out, which never happened before in the slightest. About 3/4 of the way down, coming across my bone.

Anyway, after a few minutes, I could slowly stand on that leg, and within 20min, I could walk, and within the hour I didn't really notice any pain, and the swelling had gone away.

The next day, I was cautious getting out of bed, but the vein was back and so was the pain. I saw a Dr, and he said Thrombosis, and suggested a pressure sock. I wore one at night.

That solved it, and eventually, I did not need the sock.

It would return to a minor extent every now and then, but the pressure sock, cleared it up.

Where your theory comes in interest to me, is that I NEVER got this issue during the day, only at night. ie after resting horizontal and motionless for a long period. I also never got it on long haul flights; ie just the motionless part.

I could of been a great test case for this treatment, with great photos. The vein REALLY visibly stuck out. I have seen the VV photos on other sites, and the before and afters to me where marginal compared to the before (when I just awoke) and after (being vertical) of this vein. Who knows, you may get lucky, and it will return...

Other than that, no real known vein issues. I have very very slight spider veins on my ankles, but that could be related to getting old also.

oooo.... almost forgot, the answers to the rest of your questions can be found in another thread: http://www.thisisms.com/ftopicp-51550-.html#51550

And the other question I have is how did you come up with the suggested angle range that you have?

Cure that is exactly what I would be looking for to make a VV connection with MS. Thank you so much for that.

I would like if possible to ask your members if they would consider putting IBT to the test?

Would it be possible to add another Forum module so as not to disrupt the flow of the forum?

The idea is that each person has their own diary thread, and I can see you already have a Journal included in the site that could be used to great effect.

But first let me share the archive from the MS pilot study, which should prove very interesting for anyone considering IBT. These were the posts of people with multiple sclerosis who simply tilted their bed to a five degree head up angle. Arrived at by observing how fluids circulate through a closed loop of tubing stretched along a bed. A small amount of coloured salt solution was added to the pillow end of the loop that was raised with the bed at the head end. At a 6 inch incline The salt solution flowed down one side and the clean water in the other side flowed up, just as it does in my experiments on youtube. 6 inches was decided upon for optimum circulation and comfort. Higher and the bed becomes uncomfortable, lower and the circulation is less effective.

As the bed was raised at 4 inches with the tube loop on it, salt solution flowed down the one side and clean water flowed up the same side over the top of the downward flowing salt solution. At six inch incline the whole tube circulates so a down flow on one side and a return flow on the other side.

My biggest stumbling block with MS is that we cannot provide photographs to show changes, but we can provide a video diary to show improvements.

Most webcams, mobile phones and digital cameras can become a valuably method of documenting improvements and maintaining a diary. This could become a powerful tool to reach the MS community should we confirm the pilot study results.



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One minor incident is not a connection by any stretch. Otherwise my MS is related to the second and fourth fingers being exactly the same length on my right hand, but slightly different on my left.

Double blind, placebo controlled trials will get a treatment credibility, and similarly "draw any connections".

I think you already have.

As for disrupting the flow, an individual thread does not "disrupt" other threads, even within the same forum. I am sure the administrators will create a forum if and when the need arises.

My "journal" is simply placed to possibly help others to decide if its worth a trial. I kept it separate to my main "journal", which has been running for a few years now. I will integrate the two if IBT becomes part of my long term strategy.

Without doing any of the numbers & tests, that sounds like it would be very dependent upon the density of the liquid, and how the "salt" alters that density

The head of my bed is actually higher. Does this fact negatively effect circulation? as it does not bother me comfort wise.

why not MRI's?

I would advise caution with web videos, the internet is writhe with "video evidence" of many shonky treatments.

Your mentioning a swollen vein at the time you experienced your first bout of MS is something a controlled study could not be used for. But it is a question that could be asked to a large number of people with MS to provide some interesting stats that would be very useful.

The salt flow I mentioned was a response to you asking how I arrived at the angle of the bed. This loop experiment was used to observe how the flow takes place at a five degree angle.

Disrupting the forum flow may become more of a problem than you think with new posts being frequently added from a group of people sleeping on an incline. You might be surprised.

Double blind placebo is not required for a method that heals when a person is asleep. One has to be awake to be influenced. Anyway, there will be a large number of people who for one reason or another will not take part in the study that could provide some data as controls.

MRI scan is a luxury I cannot afford. But if MRI scans are something a person uses fairly regularly they could prove very useful.

No, not at all. I re-read my post, and checked. I wrote of no such link between the two, you were at a slight disadvantage in that you did not know enough of my history, and that I commenced symptoms 12-15 years ago. The vein actually appeared 5 or so years after my first bout / symptom. Read my post carefully, my leg "collapsed" due to the pain, and function returned after an hour. If anything, I think it possibly disproves a link, as the vein has resolved itself, while my MS continued to develop.

I strongly disagree here, the placebo effect on a slow to resolve medical condition, only requires that the person be conscious of being treated. They may / think / will experience / note the effects while they are awake. Otherwise you would be saying that all placebo trials could be replaced by open label trials, but applying the treatment while the participant was asleep.

Yes, most people will get yearly or such MRI scans as part of having the condition, to check on disease progress. You will just need to stay in contact with all the people that try this therapy, long term. From memory, you have had people with MS on an inclined bed for some time, if you contact them again, I would certainly expect a number of them to have had another MRI recently, that could be compared to a pre-therapy one?

Ok I did misunderstand your post about when you noticed the vein and now agree it is not as important as I first thought.

On placebo for IBT however, your argument has several problems to overcome.

1. It must explain how placebo can cause heart rate in both dogs and humans to decrease by 10-12 beats per minute while sleping on an inclined bed.

2. Why respiration rate in both dogs and humans slows by 3-4 breaths per minute sleeping inclined.

3. How can placebo cause varicose veins that have been present for 20 years or more to shrink after only 4 weeks of IBT?

There are many more interesting points but those will suffice.

On the other hand.

Why has placebo on a flat bed failed to cause varicose veins to shrink and oedema to vanish?

But what is placebo exactly? Could it be that simply getting out of a flat bed and sleeping for shorter periods in a flat bed would provide a person with increased energy and give them a boost that could be conceived as mind over matter when really it is a postural change that has positively influenced circulation?

I believe this to be correct, and have not yet come across a sleep based placebo.

Great idea about contacting some of the people from the pilot study to find about changes in MRI scans over such a long period.

Contacted first one right after I read your post. Going to take some time to find others though as email addresses have changed and a lot of data was lost when leaving AOL, because they hold your emails.

Andrew, I you have misread my post again. I made no assertions as to any placebo effects specific to IBT, they were general concepts of the placebo effect.

Cheerleader. Thanks for your words of encouragement regarding the forum.

You are correct about the problem with finding people willing to invest even a small amount of capital to test IBT. It won't happen unless a champion can be found, even though any funding for such a trial would be minuscule, doctors nurses and consultants have to pay their mortgage so have to work where the money is.

The Internet on the other hand is a place where people can bypass bureaucracy and restrictions for good or indeed for all the wrong reasons, which understandably leads people to rightly air on the side of caution.

Why would you require advice from a vascular surgeon? More to the point why would he of all people advise you to tilt your bed the opposite way to what the literature states as correct?

Can I contact him / her?

I was sent a video from Canada a few days ago relating to oedema. Right at the end of it the reporter suggested raising the head of the bed up instead of the foot end as is the common practice.

Gradually more and more people are coming around to realise how gravity affects the circulation. It’s painfully slow but a few people have taken note and tested it. My own GP for instance advises his patients about using IBT for a number of conditions.

Torbay Hospital now advise heart patients to use IBT. I have seen a persons bed tilted who has a heart condition and was advised by the Hospital to do so.

Also a chain of spinal cord injury rehabilitation units in the US recommend all spinal cord injured patients to use IBT.

Yet they seldom have the decency to state where it came from and why it works.
Andrew

This may be of interest. Read the reply from Ken
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