CCSVI, LDN and post-treatment meds

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

CCSVI, LDN and post-treatment meds

Postby CathyRabbit » Wed Feb 24, 2010 12:11 pm

Hello, I've read a couple of posts where people have stopped taking LDN prior to having the Liberation treatment. Does anyone know why this would be? Also, what meds are the doctors prescribing post-op? I'm on the list for Poland and still waiting for a date! Thank you!
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Postby Loobie » Wed Feb 24, 2010 2:09 pm

You go off LDN because it blocks the mechanism of action of opiates like morphine and percocet, which are used post op for pain.
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Postby CathyRabbit » Wed Feb 24, 2010 2:26 pm

How long do you have to go off the LDN for? And thanks for such a speedy reply!!
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Postby ErikaSlovakia » Fri Feb 26, 2010 12:27 am

CathyRabbit wrote:How long do you have to go off the LDN for? And thanks for such a speedy reply!!

You must stop 72 hour prior the procedure and you can start anytime you do not take any strong painkillers like morfine...
As I did not have any pains at all after the procedure I started 3 days after again.
Erika
Well, I just had headache.
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby William57 » Mon Mar 22, 2010 3:54 am

Hi Erika,
why did you start again with LDN? And were you releaved from any symptoms after taking LDN again? If so, which weere they?

If I remember correctly, you did not experience any positive effects after the liberation treatment (also nor any negative). That was a while ago. How is it now? Still the same?
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Stay on your current medication

Postby MarkW » Mon Mar 22, 2010 4:18 am

Stay on your current medication is my advice. This is especially true if the medication is having a positive impact for your MS. If you read Prof Zamboni's papers he kept his subjects on interferons after CCSVI treatment. The pharmacology of the impact of CCSVI treatment on your current medication regime is far too complex to predict. Changing one thing at a time will allow you to observe the impact of your CCSVI treatment. Keeping a daily diary is a good idea. Low Dose Naltrexone may reduce the effect of opiates but the dose to do this is 10 times the usual dose of LDN. I have not seen any published data in this area.

Kind regards,
MarkW
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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Postby ErikaSlovakia » Mon Mar 22, 2010 4:35 am

William57 wrote:Hi Erika,
why did you start again with LDN? And were you releaved from any symptoms after taking LDN again? If so, which weere they?

If I remember correctly, you did not experience any positive effects after the liberation treatment (also nor any negative). That was a while ago. How is it now? Still the same?

Hi William!
Nobody in the world knows what is the best to do or not to do after the procedure. We will know more in 10 years of course.
My biggest problem is still the fatigue. I felt much better the first 33 days.
Nobody knows if it is the answer for MS.
I just want to be short now because I must go out now.
Erika
My walking is still better but I also have anemia and tetanic syndrom and side affects from Carbamazepin.
Do not think you will have no MS 3 days after the procedure.
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby LR1234 » Mon Mar 22, 2010 4:39 am

Hey Erika, I am wondering about the blood thinners and their contribution to people feeling better after the procedure.

Do you think that maybe the blood thinners helped with your fatigue and blood flow?
Maybe MSers need to be on some sort of blood thinner (nattokinase/vitamin E). I am drinking red clover tea because apparantly that is a blood thinner.

It does make me wonder sometimes how much of the improvements are CCSVI and how much are down to blood thinning.

What do you think?
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Postby ErikaSlovakia » Mon Mar 22, 2010 7:32 am

LR1234 wrote:Hey Erika, I am wondering about the blood thinners and their contribution to people feeling better after the procedure.

Do you think that maybe the blood thinners helped with your fatigue and blood flow?
Maybe MSers need to be on some sort of blood thinner (nattokinase/vitamin E). I am drinking red clover tea because apparantly that is a blood thinner.

It does make me wonder sometimes how much of the improvements are CCSVI and how much are down to blood thinning.

What do you think?

Well I am not sure. My fatigue was better but not gone the first 33 days.
I was injecting Clexane 27 days more but my fatigue was getting worse.
I only remember 2 things: I was taking Lisinopril against high blood pressure and my BP got lower and after couple of days I had flu.
My fatigue is still here but my walking is still better - it started 7 or 8 weeks after the procedure.
I am not worse than before the procedure and I for sure did not have any attack. Problem number 1 is still my fatigue and problem number 2 is weakness. I forgot but I have much less pain behind my eye usually no pain. It was worse before the procedure.
I am still often sleepy - it is getting on my nerves of course :)
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby Merlyn » Mon Mar 22, 2010 12:27 pm

It is obvious that LDN does not stop the body from accumulating iron.
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Postby acol » Tue Aug 31, 2010 6:32 am

Hi Everyone,
It is quite a while since I last posted on this board and a quick scan and search indicated that this thread might be the most appropriate for the subject that I wanted to discuss.

I was treated in Poland in March this year and had both jugulars ballooned and a stent inserted in the left jugular. I suppose that my reluctance to report back has been due to the absence of obvious benefit and possibly one or two concerns about my stent. I also believe that I need more time to try to make a more objective evaluation of my procedure. After all, I had always said to myself that I would be more than happy if the CCSVI procedure did no more than halt or slow the progression of my MS.

I certainly don’t feel any worse, other than a slight sensation of my stent at certain times of the day (usually when I am tired). On the other hand I suffer less from nerve pain and I am sleeping better than beforehand. Are these benefits due to the CCSVI procedure or are they due to the prescribed blood thinners?

I have been on Clopidogrel and aspirin for about 5 months following the procedure. I had intended remaining on Clopidogrel for 6 months and the aspirin for the rest of my life. However, I recently injured my foot and because of the bad bruising I decided to prematurely come off the Clopidogrel.

I had wondered whether or not this would have any affect on how I felt? Two weeks later the only noticeable affect is an increase in my nerve pain. The pain is still much less than before going to Poland but its return was an unexpected disappointment.

This suggests to me that Clopidogrel (and possibly blood thinners in general) may have a beneficial affect in reducing nerve pain. I suppose that I could try my own experiment and start taking Clopidogrel again, just for a few weeks, to see if it reduced the nerve pain. However, even if it did reduce the pain I don’t want to take these drugs unnecessarily.

This has prompted me to try to find a more natural remedy that may have the same affect but which could be taken long term. I am currently taking 100 mg of dispersible aspirin (one third of tablet). I am quite happy with this dose and wonder whether this could be slightly increased to possibly half a tablet?

Any thoughts on the matter would be welcomed?
Nigel
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Postby girlgeek33 » Tue Aug 31, 2010 8:23 am

Still taking LDN, and will for a very long time! I've been on LDN for 6 years and love it. I only stopped taking it the day of the procedure. I noticed years ago that I no longer get colds and flus and truly believe it is thanks to the LDN. There are so many benefits to LDN. If any want to understand it more, search YouTube for "how ldn works" the first video that comes up is a great video to watch. Basically, LDN triggers the immune system to reset itself, allowing it to work better...
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Postby vivavie » Tue Aug 31, 2010 4:08 pm

From my experience blood thinners are not helping me with ms. While I was on Clexane I had a very bad sensation of Jello brain (squeashing against the skull) every time I move.

I am on Plavix and Aspirin, non stop, since 1st procedure in April. Fatigue-pain-brain fog never change.

Other mild improvements lasted only 6 weeks.
Had 2nd procedure 13 days ago, stent unblocked and angio left/right/azygos. Still no change! not even the small previous improvements (bladder, bowel, saliva, sleep)

Conclusion: Blood thinners have no effect on my ms!

I am even wondering if my fatigue will be less when I stop taking Plavix because it is worse then pre-liberation.

Does LDN helps with neurophatic pain? I take a LOT of pain killers without any relief at all.

My neuro is very much against CCSVI and LDN. At the pain clinic they tell me LDN should be my neuro's call. I am spinning around and around...
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Postby girlgeek33 » Tue Aug 31, 2010 6:46 pm

[quote="vivavie"]
Does LDN helps with neurophatic pain? I take a LOT of pain killers without any relief at all.

My neuro is very much against CCSVI and LDN. At the pain clinic they tell me LDN should be my neuro's call. I am spinning around and around...[quote]

Typed a whole bunch and lost it, ugh...

Okay, LDN doesn't target specific symptoms so much as it can generally improve health and overall symptomology. For some greater than others. As with everything else related to MS, different with everyone...
The upside of LDN, you will start to see some improvements, probably small, within the first week of taking it. Then improvements continue to grow for about 6 months and then it is believed that is as good as you will get . If for any reason you don't like LDN, you can just stop taking it at any time. No weening off of it as it only stays in your system for a couple of hours.
You will likely need some non opiate pain medications for the duration that LDN is in your system. You can time when you take LDN when you need an opiate pain medication. For example, opiate at night, LDN in the morning. Nothing will happen at this low dose if you do happen to take them both at the same time. The pain medication likely will not work as well. At the original intended dosage, 50 mg three times a day will make you violently I'll if you take both naltrexone and an opiate based pain medication. I've had dental work, forgotten about LDN, taken both oxy and LDN at the same time and nothing happened to me. I wondered why people got hooked on oxy because I didn't feel anything worth getting addicted to. It did allow me to deal with the pain of the dental work. Some people swear you absolutely shouldn't take them together. But, I've taken oxy more recently, at a different time than LDN, and realized that oh there is a difference in when I take it the same as LDN. lol
You can get LDN on your own. There is a great deal of information online, on 3 of the main LDN sites. There are listings of Doctors in various areas of the US and Canada. As well, Skips Pharmacy in FL will ship it to you. But you can find this info. In my opinion, this is very worth trying. You have nothing to lose, minimal side effects, inexpensive and no risks. So much to possibly gain. Typically MSers are started at 3mg and increased to 4.5mg after 1 month. Some start lower, at 1.5mg. Prior to liberation I was on 4.5mg twice a day. You can take up to 10mg a day. The scientists say that they notice no difference in benefits to MS above 10mg. You can safely take so much more, but not needed. Remember, intended original dozing is 150mg a day.

Here are sites:

www.ldnscience.org (you can even ask the LDN researchers questions on this site)
www.ldnaware.org (pretty sure this is a site someone taking LDN oversees)
www.ldners.org (for those who take LDN, support and info)
www.lowdosenaltrexone.org (this is by a Dr that has sadly passed away. He posted a great deal of info hear though. I don't believe it was updated much in more recent years.)

All the best to you!
D
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Postby CureIous » Tue Aug 31, 2010 7:24 pm

girlgeek33 wrote:
vivavie wrote:Does LDN helps with neurophatic pain? I take a LOT of pain killers without any relief at all.

non opiate pain medications for the duration th:

www.ldnscience.org (you can even ask the LDN researchers questions on this site)
www.ldnaware.org (pretty sure this is a site someone taking LDN oversees)
www.ldners.org (for those who take LDN, support and info)
www.lowdosenaltrexone.org (this is by a Dr that has sadly passed away. He posted a great deal of info hear though. I don't believe it was updated much in more recent years.)

All the best to you!
D


Thanks for the comprehensive, well thought out info and links. Well done. Good to see you back here also.

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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