CCSVI and Current Medications- food for thought

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

CCSVI and Current Medications- food for thought

Postby MegansMom » Tue Sep 14, 2010 5:29 am

All of the drugs that are currently being prescribed or are in the end of clinical trials ( the new orals) have all based their results on people with MS- since most of these folks have CCSVI- that means the drugs test results are based on being done on people with impaired venous systems. They are based on theories that the "immune system is attacking the myelin sheaths". Most work by interupting the normal ways the immune works- trying to suppress it or interrupt it or limit it. They all do this different ways/methods but their aim is to keep your immune system from working (by so called attacking itself). The new orals alter the complete production or availabilty of the lymphocytes........and the effects are very long lasting. Some lymphocytes regulate the immune system.

So this is what I can't get my head around-


If CCSVI is present and diagnosed and corrected....then we have a normal blood circuit and the flow impairment is removed. Albeit, in patients with MS -with previous damage from the effect of the anomaly......damaged myelin and lesions where myelin has been stripped off.


Wouldn't you need a healthy (non-suppressed) immune system, just as is desired in Guillain Barre syndrome(GBS) , where remyelination and healing is the desired outcome? In fact wouldn't you want a very healthy immune system with a full host of the different parts of it to aid the remyelination?


I know that its so early to know what is right and wrong with these drugs but the gradual improvement seen by so many post angioplasty that gave up their drugs seem remarkable. Especially those that have had MS for a long time and had the greatest sequeale(disablities), this seems to support the same kind of recovery as seen with GBS. That over time with good diet and exercise improvements can be seen.

Just food for thought.....

I tell you, this is an exciting time.

PS I know that these beginning scientists ( Zamboni et al) warn not to change drug regimens because they are not sure what would happen
But the nurse in me (with 38 years of experience)can not "get" how the type of curreent MS drugs could help a healing brain.

Anyone have any ideas?
Last edited by MegansMom on Tue Sep 14, 2010 11:35 am, edited 1 time in total.
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My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Re: CCSVI and Current Medications- food for thought

Postby sbr487 » Tue Sep 14, 2010 5:44 am

MegansMom wrote:
In fact wouldn't you want a very healthy immune system with a full host of the different parts of it to aid the remyelination?


MM, assuming you have taken care of the root cause of MS, the only downside of continuing medicines would be that they keep your immune system down (apart from general side effects of these medicines) which is not good if you were to have an infection ...

But look at this this way - once the blood flow is normal, the residue in the brain (iron or dead cells) continue to be there. Would you want normal process to clean it up (assuming its possible) or you want immune system to clean it up?
I think the side effect of immune system cleaning up the mess is already known (it takes away the good cells also) but probably natural draining might be better.

Just my thoughts ...

My own feeling is that drs who ask medicines to be continued do so since they don't know for sure what is the nett effect of the procedure. Some might say it just not to make a radical departure from normal route ...
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
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Re: CCSVI and Current Medications- food for thought

Postby MegansMom » Tue Sep 14, 2010 6:39 am

sbr487 wrote:
MegansMom wrote:
In fact wouldn't you want a very healthy immune system with a full host of the different parts of it to aid the remyelination?


MM, assuming you have taken care of the root cause of MS, the only downside of continuing medicines would be that they keep your immune system down (apart from general side effects of these medicines) which is not good if you were to have an infection ...

But look at this this way - once the blood flow is normal, the residue in the brain (iron or dead cells) continue to be there. Would you want normal process to clean it up (assuming its possible) or you want immune system to clean it up?
I think the side effect of immune system cleaning up the mess is already known (it takes away the good cells also) but probably natural draining might be better.

Just my thoughts ...

My own feeling is that drs who ask medicines to be continued do so since they don't know for sure what is the nett effect of the procedure. Some might say it just not to make a radical departure from normal route ...


A normal immune system doesn't attack itself ( that is the old theory of MS/autoimmune)
A normal immune system has the ability to recognize itself and repair and heal itself WITHOUT attacking the healthy self.

Of course the ability to heal and repair is based on a few other requisites,such as : the right amount of oxygen, the right pH, the right amount of glucose, the right temp and pressures. Its requiring a lot of things to be good to function wellbut the human body is remarkable in its ability to do this.

I have seen remarkable remyelinazation post Guillain Barre syndrome, so I know remyelinazation is slow but can happen. Especially when the persons immune system (WBCs)is healthy and NOT SUPPRESSED.
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MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Re: CCSVI and Current Medications- food for thought

Postby sbr487 » Tue Sep 14, 2010 6:59 am

MegansMom wrote:A normal immune system doesn't attack itself ( that is the old theory of MS/autoimmune)


I think the CCSVI theory is that the dead cell build up in the brain results in immune activity. You fix CCSVI the build up in the brain stops but what about the ones that are already present?
So the immune cells patrolling our body will continue to provide feedback about the presence of unwanted accumulation.

MegansMom wrote:A normal immune system has the ability to recognize itself and repair and heal itself WITHOUT attacking the healthy self.


To be very frank, I think this might be very simplistic view of our immune system. Most of the times, our immune activity carries with it, its own collateral damage. For example, the process of inflammation itself can cause damage to cells that were not even target of immune activity ...
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
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Re: CCSVI and Current Medications- food for thought

Postby PCakes » Tue Sep 14, 2010 7:10 am

MegansMom wrote:But the nurse in me (with 38 years of experience)can not "get" how the type of curreent MS drugs could help a healing brain.


MM,
What you say certainly makes sense to me. I believe, given a chance and with the right therapeutic and lifestyle choices, our bodies will take care of us.
I broke my foot a year ago and watched, via xray, a shattered bone return to it's original form... miraculous.
Anyone who has spent any time in a hospital knows who's really in charge ;)
Best wishes to your daughter.
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Postby Cece » Tue Sep 14, 2010 7:54 am

I will look up what you're saying on Guillain-Barre syndrome, I don't know anything about it.

So the idea is that the immune-modifying drugs worked because they kept the body from attacking the damaged/dying neurons and glial cells and myelin of the brain, which were dying/damaged/dead because of the effects of CCSVI (deoxygenation, iron deposition, etc.) Then you fix the CCSVI. How quickly the brain will be clear of its dying/damaged/dead? If the MS drugs have been holding the immune system at bay, does quitting the drugs cause a rebound effect in people? I have heard this said about Tysabri, not sure of the others.

I'm personally convinced that the origin of MS is in CCSVI-caused damage. Then to say that, yes, the immune-modifying drugs had a positive effect on MS in untreated CCSVI, but we don't know that they have any role in treated CCSVI. That seems to follow too....

Many people however are not getting full 100% resolution of their CCSVI issues. Many, many people are going back for a second procedure or living with restenosis. These would be situations when the disease-modifying drugs would definitely still be of use, I think.

You raise a lot of good points. On a personal level, I've stopped taking my Copaxone earlier this summer, because I don't know if what's in it could cause harm in the long run either, but it's a hard decision and I'm nervous about it.
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Postby silverbirch » Tue Sep 14, 2010 8:18 am

I have enjoyed reading this thread and also believe the immune will calm down and hope a slow repair of myleine I had read some were mm per month when brain repairing after an attack I hope this may be the case after Liberation procedure

Clearing up of dead cells, I think the immune will not clear this up other illness e.g stroke , TIA etc has the immune cleared damage up or just left it alone once its been in active

Im going to pop down to the hperbarinic chamber / keep good health pop into the local sune bed for 4 min bust of stand up UV rays for the benifit of the bones and not the beauty/tan side

To date I have declined (for now !!) the offer off DMD/ Steriods . This was based on the immune being surpressed therefore unable to ward off any thing else comeing my way coupled with possible side effects of the DMD ..

Although I will remain on my daily baby asprin IR said it wont do me any harm and may do me some good. I will review this in 6 months.
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Postby 1eye » Tue Sep 14, 2010 9:25 am

I can't tell anybody what or what not to do for medication, other than to say I think we have too much faith in medication. There seem to be 2 main kinds: the ones that 'treat' tempororily, like acetaminophen, and the kind we are supposed to be on for life, like my heart meds.

If you buy into the theory (which I do now that the placebo effect is kicking in nicely :^) there is accumulated trash in your CNS from dirty blood, or blood going too slow through the brain. So you might need your immune system to be intact to clean up. Personally, I trust that my body has healing built in. If you stop disease progression, I can do the rest.

It was thought that the CNS immune system had 'gone rogue', and that it would attack if you let it in from the blood. In the case of Tysabri, this can lead to brain infections running wild, because immune cells can no longer get to it. Same with fty720, except the theory is, we have just convinced T cells not to float around so much, and to just maintain surveillance from their hiding-places. I don't know about cladribene, just seems to me if you have a completely working immune system, why screw with it?

Not being able to get DMDs because of my SPMS diagnosis, I am not on them. But I wouldn't take them after Liberation, even if I could, for that very reason. And remember, no DMDs treat progressive forms of MS. For those there is no treatment. So no worries about not taking them.

Lots of people have different views. My friend's son who has GBS is being given immunoglobulins and blood transfusions. Maybe he needs to be tested for CCSVI? Maybe it would go much quicker if the circulatory system were working 100%

I cannot suggest anything, though. He is mortally ill and in ICU.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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Postby silverbirch » Tue Sep 14, 2010 9:42 am

your logic is good and my cup of tea... although not all drink tea and would disagree

I do hope your friends son get well soon xxxxxxxxxxx
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Postby esta » Tue Sep 14, 2010 10:27 am

hi all
i'm also not on drugs, ( PPMS, liberated a 2nd time 3 weeks ago) and truly grateful i don''t have to make this decision...
coming from my belief system and conspiracy theory towards western medicine, i'd run like hell from this stuff, as i, too, believe the body knows best, and given a chance, will heal itself.
it obviously is a scare tactic in my eyes, to warn patients to stay on a drug that supresses the immune system after liberation...duh?
mm your onto something,
the answers will be curiously tinged with common sense or none...
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Postby MegansMom » Tue Sep 14, 2010 11:33 am

Just a note to clarify the ability of the body to "clean up" dead cells, such as in heart attack,gangrene, etc.-

to work efficiently the immune system needs all of its parts , as I mentioned in the opening post- and a circulatory system that brings oxygen, glucose and WBCs TO the injured area----and wastes including WBCs( that do the hauling of debris) AND carbon dioxide and waterFROM the cells .

In Infarction (cell death) sometimes the injured area is not accessed by these nutrients and oxygen- the injury being too deep and extensive and even then the body can repair itself in a lot of cases- there may be scar tissue thats not the exact same but the body is truly remarkable in its ability to repair itself........in hypoxia ( more of a starvation) the cell does not die but its severely injured-this type of cell injury may be more recoverable. This is seen when a person has CPR but doesn't get enough oxygen- its called anoxic encephalopathy- which in some cases resolves over time, depending on the extent of damage.

We lose dead cells ALL the time....all kinds.( Skin, hair, blood cells, most cells have a finite life) Nerve cells and brain cells are more specialized, more complicated and difficult but remyelinazation is "reinsulating" the wire not replacing a dead cell. In MS it is my belief that the cells have scars, not that they are dead. Remyelinazation is a long process but it has been proven.

I know this discussion has been somewhat simplistic but I believe that so many of you that have been taught about MS with its old theories were assuming a "broken" immune system, not "broken" plumbing. Most likely your immunity is NORMAL.
And the Neuro's are still pushing drugs that are based on OLD medicine.
Last edited by MegansMom on Tue Sep 14, 2010 3:21 pm, edited 1 time in total.
Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Postby PCakes » Tue Sep 14, 2010 12:13 pm

MegansMom wrote: Remyelinazation is a long process but it has been proven.


MM, thank you for this.. a gentle reminder that patience is the key.. healing takes time.. even post angioplasty 'time is brain' but now..in a good way :)
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Postby 1eye » Tue Sep 14, 2010 2:14 pm

silverbirch wrote:your logic is good and my cup of tea... although not all drink tea and would disagree

I do hope your friends son get well soon xxxxxxxxxxx


Mostly coffee for me, thanks. But tea's good, in a pinch.

I just want to see the fellow, but relatives only in ICU.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby silverbirch » Wed Sep 15, 2010 12:45 am

MegansMom wrote:I know this discussion has been somewhat simplistic but I believe that so many of you that have been taught about MS with its old theories were assuming a "broken" immune system, not "broken" plumbing. Most likely your immunity is NORMAL.
And the Neuro's are still pushing drugs that are based on OLD medicine.


I love this thread keeping it simple or if you like lay mans terms will help educate thank you xxx
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De-stenosis and drug therapy

Postby MarkW » Wed Sep 15, 2010 6:30 am

Hello MegansMum and all,
My take on this is that there are too many variables to make any logical suggestions with regards to existing or new drug therapies. The immune system is so complex that most drug therapies impact only a small part of it. I stick with Prof Z recommendation - take existing drug therapy along side de-stenosis.
Kind regards,
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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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