CCSVI and CCVBP

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

Re: CCSVI and CCVBP

Postby HappyPoet » Wed Aug 14, 2013 11:53 am

oh dania, you poor thing. You have my prayers the docs will listen to you, find the right diagnosis, and formulate a treatment plan.
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Re: CCSVI and CCVBP

Postby blossom » Wed Aug 14, 2013 3:34 pm

dr. flanagan, i would say yes. i was in my body nobody else. the positioning of the neck and movement started early on. but, i kept going seeing dr.'s and chiro.'s getting x-rays wanting answers why my right hip bone hurt so bad-i was sure it had a crack or was broken and they were missing something. also, between where the groin area attaches to the leg in the r. hip area it was the oddest achy like the blood flow wasn't right. then the low back started to hurt bad. along with the legs feeling like bugs crawling to ice pick jabs. when i finally went to a neuro. about 2 yrs. later the tilting head and better movement mostly with the arms was in play. by then my body especially feet and hands would turn red or blue and body temps were like 2 different people. the neuro. sat me in a refrigerated room took numerous readings and diag. at that time rsd. had no answers nor would he or any of them look at or pursue my low back, hip or cervical spur questions. which is what went on through the yrs. until you came along and made sence of it all.

nucca as said did help low back pain and tmj.

i feel like an old bridge now a days. after being hit at the base by a boat and my foundation damaged and knocked off kilter which didn't help the situation of the upper flawed structure "spurs" and yrs. of the lack of proper repair and neglect the elements have taken it's toll and restoration may be impossible and then the bridge is condemed and done away with. a bridge that if taken care of in the first place could still be functioning and useful.

it is so hard and for some impossible especially at a certain point to get to where they need to get to for help. physically, financially and mentally. having a clinic run by you and a quali fied group would be a true win win producing positive non invasive drug free results. i'd think there would soon be a demand for multi duplicated such clinics making it more feasible for the masses. but, for right now we have you and that is a blessing.

get prepared i think i have the winning lottery no.
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Re: CCSVI and CCVBP

Postby NZer1 » Wed Aug 14, 2013 4:24 pm

Dr F I assume you may have seen this, if not enjoy;
http://www.youtube.com/watch?v=UCbWEKQH ... e=youtu.be

Dr. Peter Rowe, Professor at Johns Hopkins Children's Center lectures on "Dysautonomia & Postural Orthostatic Tachycardia in the Chiari/EDS Population" at the Greater Metropolitan Washington Area Chapter Meeting on July 17, 2013.
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Re: CCSVI and CCVBP

Postby dania » Thu Aug 15, 2013 4:04 am

Blossom you echoed my sentiments. So well put. I too, feel my body is not straight but others say it is. I think that is because my pelvis is twisted and the displaced SI joint. I bet your is twisted too.
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Re: CCSVI and CCVBP

Postby uprightdoc » Thu Aug 15, 2013 5:38 am

Blossom,
Watch the presentation by professor of pediatrics, Dr. Rowe, posted by Nigel. Doctors are just now starting to connect the dots in childhood and adolescent problems related to the skull, spine and hydrocephalus. They are starting to see the gender connection but don't see racial connections. Female skulls and spine have smaller designs, including cranial vault and spinal canal capacities. Two of the female patients with EDS had stenosis of the cervical canal due to buldging discs. In one case the buldging discs were the result of cervical instability caused by the EDS, which was compounded by decompression surgery. The case with stenosis of the canal had complete recovery following disc surgery. Hydrocephalus, Chiari malformations, spondylosis, stensosis and scoliosis can cause similar problems in adults.

Thanks for the Post Nigel. I hadn't seen it. It was a terrific presentation.
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Re: CCSVI and CCVBP

Postby NZer1 » Sun Aug 18, 2013 1:58 am

Hi everyone,
Dr F I have just realised that my noisy spine occurs only when I move from side to side, no noise when I move forward or backward.
The other insight is that the frequency and repetitiveness peaks during the pulse stages of the CAP protocol and diminishes after the symptoms of the endo-toxin die off occurs.
Don't know why I hadn't realised this before and I naturally wonder if this is something you have any experience or insights?
Because of my injury history and the CPn infection I wonder how it interlinks with the 'MS' symptomatology and if it is an issue for others as well?

:)
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Re: CCSVI and CCVBP

Postby uprightdoc » Sun Aug 18, 2013 3:22 am

Hello Nigel,
Compression of joints is believed to cause cavitation of gases within the synovial fluids of the joint capsules. Lateral flexion (side bending) of the spine compresses the left and right joint capsules more than flexion and extension. The peaks during the CAP protocol cycles are most likely due to increased inflammation and edema from immunological reactions that are affecting the joint capsules. The inflammation and edema most likely decrease at the end of the pulse cycle. It would be interesting to do thermogram images over the course of the cycle.

How long have you been on the protocol now? How much longer do you have to go and how are you doing?
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Re: CCSVI and CCVBP

Postby NZer1 » Sun Aug 18, 2013 1:53 pm

Thanks Dr F,
I have been on the protocol for 11 months and appears I will be on it for 2-3 years total gauging by the progress and responses. After the 12 month period there will be an assessment and that will help with indications.
Overall I am in the 'get worse before getting better stage' still. I have less mobility, weakness, fatigue, cognitive changes, muscular aches and pains, taste of toxins, sleep issues and many other transient issues. I have lost 12 kilos in the time and some could be attributed to CPn and cellular die off, some to diet fine tuning and some because I was a little over weight and now more of a healthy weight. I have learned that each person will have their own challenges because of the past injury and trauma history as well as the CPn bacterial damages done to the vascular system of the seven in NZ on the protocol, all for roughly the same time, we are similar in our symptomatic responses to the protocol. We are all wondering what the long prognosis will be! There will be some data presented in 6-12 months and so far it is positive news.

I will ask about thermogram locally, Graham Dobson did them each visit when I journeyed to the College for treatments.
Very good point, I will also speak to the Specialist, Dr Paul Thibault (Australia) about putting it in his study.
Paul was in NZ over the weekend and spoke at a Conference in Dunedin about his work and findings to date. ;)

I have also found that the neck flex is actually an interesting rotation downwards and then a tilt on the up movement to get the compression effect and noise. Hard to describe but I believe it takes a compression action to create the cracking/popping sound. The sound is repeatable for 5-10 times if I have been resting and not moving much.

:)
Nigel
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Re: CCSVI and CCVBP

Postby NZer1 » Sun Aug 18, 2013 2:38 pm

Interesting studies and observations coming out about Bacterial involvement in our disease! As someone has said it would be interesting to do ultrasound testing prior and post treatment for vascular and CSF changes.

"Conclusion:

We report reversal of major neurological symptoms in three patients after FMT for their underlying GI symptoms. As MS can follow a relapsing-remitting course, this unexpected discovery was not reported until considerable time had passed to confirm prolonged remission. It is tempting to speculate that
FMT achieved eradication of an occult GI pathogen driving MS symptoms.
Our finding that FMT can reverse MS-like symptoms suggests a GI infection underpinning these disorders. It is hoped that such serendipitous findings may encourage a new direction in neurological research."
http://www.fecalmicrobiotatransplant.co ... ed-by.html

:)
Pushing as always,
Nigel
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Re: CCSVI and CCVBP

Postby uprightdoc » Sun Aug 18, 2013 2:52 pm

I recently consulted with two cases of PD associated with severe constipation. They both had fecal transplants with no results. In my opinion the constipation is due to dysautonomia and decreased intestinal motility. Dysautonomia most likely causes the proliferation of the helico bacter pylori seen in PD patients as well.
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Re: CCSVI and CCVBP

Postby uprightdoc » Sun Aug 18, 2013 2:55 pm

Nigel, Thanks for the update on your condition and information on the protocol.
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Re: CCSVI and CCVBP

Postby NZer1 » Sun Aug 18, 2013 3:00 pm

uprightdoc wrote:I recently consulted with two cases of PD associated with severe constipation. They both had fecal transplants with no results. In my opinion the constipation is due to dysautonomia and decreased intestinal motility. Dysautonomia most likely causes the proliferation of the helico bacter pylori seen in PD patients as well.


Did these people have any changes though?

There appears to be blinkers on with some assessments and the benefits are overlooked and not reported because the assumed outcome didn't occur, imo

;)
Still pushing, can't hold my breathe for ever though,
Nigel
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Re: CCSVI and CCVBP

Postby uprightdoc » Sun Aug 18, 2013 11:29 pm

They had no changes in their major signs and symptoms of tremors, shuffling gait, stooped posture, bradykinesia and dyskinesia, and they had no improvement in constipation.
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Re: CCSVI and CCVBP

Postby dania » Tue Aug 20, 2013 8:28 pm

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Re: CCSVI and CCVBP

Postby HappyPoet » Wed Aug 21, 2013 8:12 am

Hi dania, this link is full of LOTS of terrific SI joint info and has an active forum for member questions:

http://www.spine-health.com/forum/pain/ ... t-problems
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