CCSVI Negative (doppler/venogram) - is it pointless usin IBT

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

CCSVI Negative (doppler/venogram) - is it pointless usin IBT

Postby adamt » Mon Jun 28, 2010 10:58 am

Hi,

I had a negative doppler showing no stenosis, and a venogram and my veins all worked correctly with no stenosis - tested last week.

I started Inclined Bed Therapy 3 months ago.

So as im negative to CCSVI would it make a difference if i resorted back to a flat position - im planning on buying a new bed, and would be more awkward with a bed without a divan base

thanks
User avatar
adamt
Family Elder
 
Posts: 303
Joined: Thu Mar 11, 2010 4:00 pm

Advertisement

Postby joanp » Mon Jun 28, 2010 5:18 pm

keep up with it if you think it was helping u.
User avatar
joanp
Family Member
 
Posts: 48
Joined: Fri Feb 26, 2010 4:00 pm

Postby Whitey » Tue Jun 29, 2010 12:57 am

I would make sure your tests for Lyme's Disease are accurate.

You must have the "Western Blot" test done (the most accurate one) to be sure. I would even suggest traveling if you cannot get this done at home.
User avatar
Whitey
Family Member
 
Posts: 47
Joined: Sun May 09, 2010 3:00 pm

Postby adamt » Tue Jun 29, 2010 2:11 am

Whitey wrote:I would make sure your tests for Lyme's Disease are accurate.

You must have the "Western Blot" test done (the most accurate one) to be sure. I would even suggest traveling if you cannot get this done at home.


well i had 2 Negative western blots, showing No bands

But then had a Positive LTT-MELISA test showing "active ongoing lyme borrelia"

But i have also been on 2mg L.D.N for 2.5 years, and my condition has not progressed At All. (when i first started symptoms got a lot worse quickly)
So maybe thats why i was negative to two western blots
User avatar
adamt
Family Elder
 
Posts: 303
Joined: Thu Mar 11, 2010 4:00 pm

Inclined Bed Therapy

Postby AndrewKFletcher » Tue Jun 29, 2010 4:49 am

It is only recent research from Professor Zamboni et al that has introduced CCSVI into the possibilities for IBT. Many medical conditions have responded favourably to avoiding a flat bed and all the published evidence against flat bedrest has stacked up nicely in support of tilting beds.

Psoriasis for example responds quite remarkable and as far as we know it does not relate to CCSVI.

Spinal cord injuries also respond and could be related to compressed veins but as far as I am aware, it is the lesions / scar tissue that prevents the restoration of nerve damage. How does this fit with CCSVI? Cerebral palsy has also shown a remarkable response to IBT and as we know this is brain damage from birth.

Old scar tissue from injuries in childhood have slowly but surely smoothed and become far less obvious.

There is far more to IBT than CCSVI or indeed ms improvements. This simple modification to a bed has helped many people with a whole range of conditions over the years.

There will inevitably be exceptions to improvements and there can be no guarantees this will work for everyone with ms, lyme disease or indeed any other condition.
The good thing is that it is inexpensive to try and often free for most people, it does not involve drugs or surgery.

Should you decide to put your bed flat again, please keep us informed of any changes you notice in the next 4 weeks of flat bedrest.

Andrew
Find us on Facebook.com/InclinedBedTherapy
IBT website: http://inclinedbedtherapy.com
User avatar
AndrewKFletcher
Family Elder
 
Posts: 772
Joined: Wed Jan 14, 2009 4:00 pm
Location: Paignton, Devon, UK

Postby Algis » Tue Jun 29, 2010 5:05 am

I put it flat again Andrew... Nothing has changed for me yet ...
User avatar
Algis
Family Elder
 
Posts: 783
Joined: Sat Nov 21, 2009 4:00 pm
Location: XinDian, Taiwan

High Humidty

Postby AndrewKFletcher » Tue Jun 29, 2010 5:36 am

Algis wrote:I put it flat again Andrew... Nothing has changed for me yet ...


Hi Algis, thanks for your update and thanks for helping with my research.

Pretty convinced humidity is the factor there. If you could have a holiday in an area that has much lower humidity it would prove very interesting for both of us.

I am also deeply sorry that IBT has not been able to help you significantly and hope you find something that brings you the results you deserve to experience.

There is one other possibility regarding a local solution to the high humidity is to try to seal up the bedroom. For example, a sheet of polythene membrane can be placed under carpets and rugs to seal floorboards. Windows can be taped and doors can have draught excluders fitted. At least this will give you a relatively drier humidity to test IBT with.

My son has been backpacking in the East, he is now in Hong Kong and coming home in a few days. He says the humidity out there can be horrendous.
Last edited by AndrewKFletcher on Tue Jun 29, 2010 6:21 am, edited 1 time in total.
Find us on Facebook.com/InclinedBedTherapy
IBT website: http://inclinedbedtherapy.com
User avatar
AndrewKFletcher
Family Elder
 
Posts: 772
Joined: Wed Jan 14, 2009 4:00 pm
Location: Paignton, Devon, UK

Postby Algis » Tue Jun 29, 2010 6:02 am

Andrew: sorry if you think I was sarcastic: no. I just report.

I will do my best to try to isolate the bedroom; please understand that even the design of houses are different here. And beside my wife (45kgs) and me (in a w/c) - there is no - bo - dy :)

I'll try anyway :)
User avatar
Algis
Family Elder
 
Posts: 783
Joined: Sat Nov 21, 2009 4:00 pm
Location: XinDian, Taiwan

Postby AndrewKFletcher » Tue Jun 29, 2010 6:19 am

Algis I never for one moment thought anything other than you were trying to give honest feedback.

You have consistantly provided me and everyone else here on TIMS with your experiences using IBT. If you lived a little closer I would be round your house sealing up the doors and windows :)
Find us on Facebook.com/InclinedBedTherapy
IBT website: http://inclinedbedtherapy.com
User avatar
AndrewKFletcher
Family Elder
 
Posts: 772
Joined: Wed Jan 14, 2009 4:00 pm
Location: Paignton, Devon, UK

Postby Algis » Tue Jun 29, 2010 7:07 am

I know Andrew; I know... Forgive my brain cramp...

What exactly do you mean with "a sheet of polythene membrane can be placed under carpets" ?? Do you have any example online or..?

Thank you again for your continuous help; maybe one day we'll be neighbor 8)
User avatar
Algis
Family Elder
 
Posts: 783
Joined: Sat Nov 21, 2009 4:00 pm
Location: XinDian, Taiwan

Postby AndrewKFletcher » Tue Jun 29, 2010 11:01 am

The membrane is used in buildings to place under concrete floors to prevent dampness rising. It comes in huge sheets that when unrolled and unfolded cover huge areas for very little cost.

This could be used to construct a tent to avoid high levels of humidity, much the same as an oxygen tent keeps the air inside enriched, this proposed tent could keep the moisture out with a dehumidifier inside. Obviously a small vent is required to maintain the oxygenation of the lungs so it don't have to be perfectly air tight.

Given the severity of your condition and the lack of choices left to you it is worth considering.

Another alternative would be a mobile home used to provide a reasonably sealed environment, perhaps one could be borrowed / hired from a friend? A dehumidifier and an inclined bed are an excellent combination. Pauline Phelps was first to experience the combined benefits, noting dropped foot was not present in the mornings and present when she omitted using the dehumidifier.

Humidity has long been know to cause problems for people with ms. River valley areas and coastal areas away from the equator have high levels of people with ms.

My research began with an understanding of how trees raise water by evaporating pure water from the leaf, which mush concentrate the sap inside the leaf given the leaf produces sugars from Co2 and the sap delivered to the leaf contains dissolved soils and nutrients.

The lungs must operate on the same rules and given that the lungs are warmer than the leaves of a tree and warm air contains more moisture than cooler air so providing the humidity in the atmosphere is favourable to a net water loss, gravity can induce a beneficial affect on circulation, providing of course we are not flat.

However, when humidity is high in the air we breath in, the net concentration affect becomes compromised as we breath in almost as much water as we breath out. When this happens lethargy is rapidly encountered by people who are in good health and fitness, draining their energy.

Having worked in a river valley area doing heavy manual work, I experienced at first hand the effects of high humidity. In fact the area Buckfastleigh in Devon is renowned for a mass exodus when this atmospheric change takes place. The locals even gave it a name "Buckfastitis"

That day for me was an amazing revelation because as soon as we left the area to higher ground we came back to life and was able to complete the work unloading at a more elevated location. On talking to the people that moved out from Buckfastleigh, they confirmed that it was these life-draining days of high humidity that made it impossible to live there.

Cot deaths are also much higher than the national averages in river valley areas Source: Leslie Munro http://edmi.parliament.uk/EDMi/EDMDetai ... EDMID=9758
Leslie Munro did a statistical analysis of sudden infant deaths in river valley and low lying coastal areas. What he found was that the prevalence of cot deaths was way over the National average. Munro attributed this to water winter-logged soils. The Foundation for Sudden Infant Deaths ignored his research.


People drown on ventilators in intensive care units frequently because the humidity of the air is set far too high!

Respiratory infections generally follow poor removal of fluids from the lungs. When the body temperature drops by 2 degrees during the night around 4.30am sleeping flat, clearing fluid from the lungs becomes more difficult. This is around the time that sudden deaths take place, particularly in the elderly population. Obviously this time will alter when people go to bed earlier or later.

People with multiple sclerosis have relapses while showering or taking a hot bath

A team of elite soldiers abseiled down a waterfall into a high humidity valley in Borneo and found that all of their energy was sapped from them within minutes. They struggled for days to drag themselves out of the ravine and thought they were never going to make it out of there alive.

A questionnaire sent to people with multiple sclerosis revealed that high humidity was the worst environment for them to be in.

Tropical diseases, particularly in river valley high humidity areas are more common than diseases in moderate humidity areas. Two studies in the Rhone valley and another valley revealed that these areas had far higher levels of M.S than the national average.
Find us on Facebook.com/InclinedBedTherapy
IBT website: http://inclinedbedtherapy.com
User avatar
AndrewKFletcher
Family Elder
 
Posts: 772
Joined: Wed Jan 14, 2009 4:00 pm
Location: Paignton, Devon, UK


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service