CCSVI dead - surely an apology needed from Cheerleader

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

Re: CCSVI dead - surely an apology needed from Cheerleader

Postby ElliotB » Fri Dec 08, 2017 3:01 pm

While I am still on the fence on CCSVI, the procedure does have a relatively high success rate which is quite an achievement and seems significant, more so than most other treatments.
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Re: CCSVI dead - surely an apology needed from Cheerleader

Postby buggs » Sat Dec 09, 2017 2:02 pm

Well you have to be able to understand the research and if you don't have oxygen to your brain you can't? I swear by CCSVI treatment for me but I also swear that I do NOT have MS I have a spinal cord injury that was misdiagnosed!! So this is not dead because I went from a 4.5 on the edss scale to a 0.5 eight months after angioplasty? There is something to it but the BIGPHARMA sponsored Neuros just cant bring themselves to jeopardizing their extra income! No apology is needed for me, nothing but gratitude and thanks from this gal :)
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Re: CCSVI dead - surely an apology needed from Cheerleader

Postby Cece » Thu Dec 21, 2017 11:39 am

So this is not dead because I went from a 4.5 on the edss scale to a 0.5 eight months after angioplasty?

Buggs, that's wonderful.

Cheer wrote:Am trying to be a better human online, like Cece and Jimmylegs

I have had my moments. I guess that leaves Jimmylegs as the role model.
Really really grateful for the whole CCSVI roller coaster experience. My personal outcome is still going strong.
I would like to see the fires remain stoked and the research continued.
CUREious wrote:I still have no heat fatigue in this hot clime some 8 years after, but thats probably just confirmation bias right? Thats without the shots too.

Great to hear that too.
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Re: CCSVI dead - surely an apology needed from Cheerleader

Postby centenarian100 » Tue Jan 02, 2018 12:19 pm

cheerleader wrote:Over half of the patients had benefit in repaired cerebral blood flow and no new lesions. Sadly, only 54% of people treated had lasting repair to blood flow. The rest restenosed.


Is there actually any data to suggest that flow restoration correlated with outcome?
It is certainly possible that there could be a small number of "responders" even though the overall data are negative.

My husband Jeff was a responder to the treatment and part of this group with long lasting results.


How do you know for sure? there were many people in this negative trial who did quite well. If I find people who improved after blood letting, will you believe that blood-letting is effective?

.. a reversal of gray matter atrophy
[/quote][/quote]

You previously admitted that you were inferring this because grey matter atrophy was mentioned on one MRI report and then not mentioned on a subsequent report. This is just a matter of the radiologist's preference. Atrophy can be subtle and difficult to measure without quantitative software. If you post screen shots of his MRI, we will be able to clearly see that a venous procedure did not magically grow your husband's brain.
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Re: CCSVI dead - surely an apology needed from Cheerleader

Postby AMcG » Wed Jan 03, 2018 1:51 pm

I haven't posted for a long time and I have not read all of this thread. And I really don't want to put people off posting whatever they want to.

But arguments about the efficacy of any treatment for MS are a bit pointless when MS itself cannot even be precisely defined. What particular symptom or set of symptoms uniquely and reliably identifies MS? If you can't answer that question how can you even pose the question of what cures or ameliorates such a disease?

In relation to scientific 'proof' which I value greatly although a lot of useful studies exist about MS and CCSVI there are at least as many that are worthless and even the good studies tend to be unconvincing either way. The studies commissioned by the MS Societies to discredit CCSVI being an obvious example. Some of the statistics and experimental designs were laughable and clearly biased from the outset. Others raised interesting insights but I don't think anyone changed their views about CCSVI because of them. But I don't find that surprising.

I will freely admit to massive bias in favour of CCSVI as I have had the treatment. And I think that is a very significant point. The evidence of directly experiencing something and being a 'scientific' (hopefully) observer are fundamentally different forms of evidence and one can never be reduced to the other.

Although doctors may not be able to unequivocally say I have MS (or anything else) based on the evidence they can see I am nevertheless in a position to say without any doubt what my symptoms are. I too cannot say that those symptoms definitely add up to MS - but in a way that is irrelevant to me. I don't really care what you call it. It is what it is.

So I would suggest Centurion that the only way to convince anyone (including you) about CCSVI is to have the treatment yourself and decide. Of course you will prove nothing scientifically by doing so (and by the same token no-one here could say anything to you which would either) but it may convince you in a way that nothing else could.

I think that in discussions about CCSVI all you can reasonably ask people is for an honest opinion or an honest account of their own experience. Asking for any kind of scientific proof is pointless not even the actual scientists working in the field can do that. I would say that I personally value the opinion and advice of many of the posters above who have tried to give you some answers. And I would say that double for Joan. Like most here I would encourage you to feel free to raise any issues and ask any questions you want but the subject title you chose for this thread is simply abusive and unnecessarily insulting to Joan. I think you are the one who should apologise. Joan has nothing to apologise for.
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Re: CCSVI dead - surely an apology needed from Cheerleader

Postby cheerleader » Thu Jan 04, 2018 3:48 pm

Hi Centenarian-
1. Sadly, the results of those who had maintained blood flow were NOT separated from those who restenosed. They were reported together in the "treated" group. So, we don't know what the improvements were for those who were treated and maintained venous flow. BTW, it's not "blood letting"--it's a repair of venous malformations, which allows for better drainage of blood, CSF and lymph. This increases perfusion, oxygenation and glucose delivery to the CNS.

2. My husband's MRIs are all at Stanford, looked at by same techs--they reported remyelination of lesions, no new lesions and reversal of gray matter since his venoplasty procedure in 2009. I do not have the MRI films on disc.

Here is Jeff today, conducting the Boston Symphony Orchestra.
https://www.youtube.com/watch?v=gp59gmg ... e=youtu.be
Here's his Emmy acceptance speech from last fall. You can watch him run up on stage. That's me smiling.
http://www.emmys.com/video/2017-creativ ... atic-score

He could barely walk or stand 10 yrs ago, spent most of the day in bed. Now he's back to composing and conducting orchestras. I really don't feel like I have to convince anyone, nor apologize. He got his life back, and I got him back. So, I'm done explaining.

Thanks for the affirmation, Ali. Hope you're well.
Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: CCSVI dead - surely an apology needed from Cheerleader

Postby Cece » Sat Jan 06, 2018 6:40 pm

cheerleader wrote:Here's his Emmy acceptance speech from last fall. You can watch him run up on stage. That's me smiling.
http://www.emmys.com/video/2017-creativ ... atic-score

Ohhh I had not seen that. Yes, he had a very healthy stride up there! Congrats to him on the Emmy!!
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Re: CCSVI dead - surely an apology needed from Cheerleader

Postby centenarian100 » Wed Jan 10, 2018 9:24 pm

cheerleader wrote:My husband's MRIs are all at Stanford, looked at by same techs--they reported remyelination of lesions, no new lesions and reversal of gray matter since his venoplasty procedure in 2009. I do not have the MRI films on disc.


Here is Jeff today, conducting the Boston Symphony Orchestra.
https://www.youtube.com/watch?v=gp59gmg ... e=youtu.be
Here's his Emmy acceptance speech from last fall. You can watch him run up on stage. That's me smiling.
http://www.emmys.com/video/2017-creativ ... atic-score

He could barely walk or stand 10 yrs ago, spent most of the day in bed. Now he's back to composing and conducting orchestras. I really don't feel like I have to convince anyone, nor apologize. He got his life back, and I got him back. So, I'm done explaining.


I'm glad to hear that Jeff is doing well. If MS were a disease such as ALS where a steady decline is expected, such an anecdote would be quite unusual. However, in MS, it is extremely common. It was common before MRI, before FDA approved drugs, and certainly before CCSVI. Inflammation-related disability is often reversible, and long term remission is common. As I said, there were many people in the placebo group who did quite well in this trial. What matters is whether or not a treatment works on average versus placebo. An effective treatment should be able to defeat placebo handily in a head-to-head trial given a reasonable methodology and sufficient sample size. I don't mean to say that it is impossible that there is a small group of responders to liberation therapy or that the effect size may be small and difficult to tease out without a large sample.
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Re: CCSVI dead - surely an apology needed from Cheerleader

Postby ElliotB » Thu Jan 11, 2018 8:59 am

centenarian100, your comments can apply to every MS treatment currently available - very well though out and written!

"An effective treatment should be able to defeat placebo handily in a head-to-head trial"

I agree, and have yet to see such a trial of any medication or protocol of any kind which does. Have you?
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Re: CCSVI dead - surely an apology needed from Cheerleader

Postby NHE » Thu Jan 11, 2018 6:21 pm

ElliotB wrote:centenarian100, your comments can apply to every MS treatment currently available - very well though out and written!

"An effective treatment should be able to defeat placebo handily in a head-to-head trial"

I agree, and have yet to see such a trial of any medication or protocol of any kind which does. Have you?

As George Ebers points out, an effective treatment should stop long term progression of disability.

https://www.youtube.com/watch?v=OqY-_K1fYJY
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Re: CCSVI dead - surely an apology needed from Cheerleader

Postby whyRwehere » Sat Jan 13, 2018 2:35 am

Am trying to be a better human online, like Cece and Jimmylegs :)
Joan


Oh, is Cece trying to improve her online manners? If so, I might come back on here...was tired of the militantism. On the other hand, I have always appreciated cheer and jimmylegs, and all that they shared. Ccsvi did not work for my husband, but fortunately he did not have a stent put in, in any case nothing has ever worked. But we are still going, and thanks to a social system with protection for workers, he is still able to work; his mind is quite well.

Hope you all have a happy and healthy 2018.
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Re: CCSVI dead - surely an apology needed from Cheerleader

Postby ElliotB » Sat Jan 13, 2018 5:38 am

"nothing has ever worked"

Have you tried everything? There are many new protocols that have only become available in the past few years, perhaps one of those can help you.
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Re: CCSVI dead - surely an apology needed from Cheerleader

Postby jimmylegs » Sat Jan 13, 2018 9:41 am

well look who it is! hi @why :)

i have not seen a regimen from you for a decade! after 10 yrs of study and xp, i would have things to say about it now. i see i made the point about mag timing in relation to D3, but was still a few months away from hearing about magnesium glycinate for the first time. don't miss the oxide/citrate era, that's for sure!!

not sure if we'd ever gotten into any details behind the scenes. my PMs only go back to 2012 ( greekfromthemed :sad: :sad: :sad: )

any chance of an update on day to day routine, any nutritional bloodwork completed in the interim???

the site's been pretty settled since i think around 2013 or so. c'mon back!
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: CCSVI dead - surely an apology needed from Cheerleader

Postby whyRwehere » Sat Jan 13, 2018 12:26 pm

Well, hello back at you!
Hmmm, money being tight, I have to admit our "regimen" isn't so impressive...of course, we still march forward, so my husband is on the high dose Biotine...Qizenday. Seems to help with strength, fatigue, and circulation, but since he is in a wheelchair for a long time now, with weakened arms, etc, I can't say that we are experiencing a miracle. He's also taking 5000 iu D3, a cal 1000g, mag 400mg, zinc 15mg with more D3. The mag and zinc are oxide...is that the wrong thing? He has coQ10 and ALA 600mg. I'm thinking of ordering more stuff, so now is the time to tell me that I have it all wrong. He is also on an antibiotic regimen 1 day a week alternating, due to repetitive bladder infections despite Botox in the bladder every 6 months( he could probably use a FMT, as I'm sure his microbiome is a mess), still follows the BBD and lastly has a new machine for sleep apnea, which we are still getting the hang of.
And now he is looking at ocrezilumab(?), which I am not happy about, but he is desperate to stop the progression. So, he has to decide.
Exercise is limited to standing up, but he does have physio for his legs twice a week, and recently for a frozen shoulder, after an injection, and will try a motomed (self pedaling stationary bike), which he hasn't done forever, because it is located at the hospital physio place, and he couldn't use it and is way to expensive to buy for home, which is a pity as they really help with spasticity.
I know we could do more, but I am falling apart myself with age and it just gets to the point where you are happy to make it to the night or the weekend.
That's our rather sad update.
Why
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Re: CCSVI dead - surely an apology needed from Cheerleader

Postby jimmylegs » Sat Jan 13, 2018 1:38 pm

ok great info

without changing up anything financial, can you tell me about timing details for daily intakes of these various things? what is taken when and in what combinations?

re d3, i personally ran into some really serious side effects just taking 4000 IU per day without timing and combining carefully. i really thought i was going to die :S :S :S scary

one TiMS member took 10K IU of d3 daily for ages (it's one thing for an intake to be considered safe based on research conducted over a few months; another entirely to follow the same dose unmonitored in the long term), and was seriously depleted in at least one essential cofactor according to bloodwork, with extreme spasticity preceding eventual death. this issue is just starting to come to the attention of mainstream science and hopefully soon to clinical care when docs prescribe d3.

re magnesium u nailed it - mag oxide is no good. and mag is the essential nutrient i'd personally most seriously depleted via long term d3 supplementation at 4K IU/d. (that's why i started recommending careful timing - that was on a pharmacist's lifesaving advice, originally)

related recent mag chats: general-discussion-f1/topic29623.html
short version (sarcastic emphasis mine)-
problem: i have this stiffness/spasticity issue, and i'll thank you in advance not to give me any bs about magnesium
resolution: this new form of magnesium fixed me right up - thx!

if you can, do try for a better-absorbed form such as mag glycinate eg
http://orangenaturals.com/magnesium/

both powder capsules and powdered beverage mix forms available. i've only tried the powder caps myself.
forget where you're located but there are freebies like this out there in the world, may be something similar locally to you
http://www.trymagpop.ca/#free-sample

please do not consider cheaper forms of mag a savings - more a waste of $$ considering forms like oxide are poorly absorbed.

re zinc i am less fussed about oxide vs citrate etc. am more fussy about making sure it's properly balanced with copper to prevent a copper imbalance or deficiency (which has a bunch of extremely ms-like consequences)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3691478/
"Copper deficiency myelopathy (CDM) [as distinct from plain old copper deficiency] was only described within the last decade, and represents a treatable cause of non-compressive myelopathy which closely mimics subacute combined degeneration due to vitamin B12 deficiency...." yup.

copper deficiency details
http://neuromuscular.wustl.edu/nother/v ... htm#copper

and while we're there, here's the selenium version

http://neuromuscular.wustl.edu/nother/v ... eleniumdef

in my xp, preferred zinc supplement products have tended to be zinc citrate blended w copper citrate in the ratio 50:2 or close to it.
latest thing on my shelf:
https://www.nowfoods.com/supplements/l- ... g-capsules
this is by default since my preferred local source closed up shop. copper content is on the low side to my eye. more like 50 to 0.5.

as for abx and recurrent bladder infections. if the only supplemental zinc going in is in a d3 combo, it might be getting tied up with d3 interactions. might be better to test out a zinc-copper product so that his body can co-opt zinc for any other needs (assuming copper status is ok, of course)

again re bladder infections, could be worth taking a look at selenium intake in addition to zinc, plus dietary/supplemental sources of antiox vits A, C & E (natural source E8-omplex, that is).

if there's a muscular/spasticity element to the recurrent infection scenario, using a better form of mag may help keep things moving in the urinary dept.

re FMT nnneeeaaauuxxxxp no thx, at least not before optimizing essential nutrient levels pls and thx. first, create the optimal nutritional habitat for the desired composition of healthy gut bacteria. if you don't prioritize your substrate, then any gross transplant will be at best a short term fix, not having addressed any chronic depletion of essential nutrients in tissue.

re BBD. i do like this one in principle, if not taken to extremes. could you share details of the hubby's BBD interpretation, in the form of a rough 3 day diet diary? in 'recipe ingredients' format if possible, as opposed to 'menu items'.

spasticity brings me back full circle to d3 and magnesium.. seems like you have some really practical action items in the mix here.

all this said with the recognition that sometimes damage is permanent! *typing with imaginary gloves on as i sit here* but there's plenty to be done with nutrient dense whole food sources and top ups with affordable supplements done right :D

in sum, CHIN UP - glad you're back at this end of the learning curve :D
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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