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PostPosted: Fri Apr 22, 2011 2:10 pm 
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Posts: 223
Location: Northern Calif Monterey Bay Area
I found this recently published article on pubMed very encouraging:

LDN Therapeutic Implications for MS

This is from a Pennsylvania State Univ study published last month.

Admittedly, the study was conducted on the EAE mouse model, but the conclusions are very encouraging and relate to treatment with either OGF or LDN (which produces high endogenous OGF levels):

1. Halted EAE disease progression
2. Reversed neurological deficits, and
3. Prevented onset of dysfunction across considerable span of time.

This is very encouraging news to those who use LDN.

I'm only using 2.0mg LDN nightly right now because of bladder related spasticity problems, but hope to work up to 4.5mg nightly over time. This article encourages me to stick-it-out.

--Tracy

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CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user


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PostPosted: Wed Jul 27, 2011 5:20 am 
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Location: Slovakia, Europe
I have started with 3 mg of LDN in November 2008, after 2 weeks I started with 4,5 mg. I still take it. I just made very short breaks because of my CCSVI procedure (for 3 days) and when I had my control venography (for 2 days).
I do not feel healthy but it was quite big change for me with LDN. I almost could not walk and was totally fatigued in 2008. I did not even have energy to brush my teeth.
LDN still helps me - not with everything but I think I still have some benefit. I do not feel any side effects.
Erika

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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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PostPosted: Fri Aug 26, 2011 8:52 pm 
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Hi Ericka,
If I may ask? What time do you take your LDN and then what time do you go to bed? Do you sleep all through the night? How many hours of sleep to you get?

I am having waking up too often issues with LDN since I had my CCSVI procedure? And more bathroom trips at night.
CD

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Where there is a will, there is a way. "HOPE"

CCSVI Procedure December 2010


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PostPosted: Sat Aug 27, 2011 6:55 am 
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Location: Slovakia, Europe
CD wrote:
Hi Ericka,
If I may ask? What time do you take your LDN and then what time do you go to bed? Do you sleep all through the night? How many hours of sleep to you get?

I am having waking up too often issues with LDN since I had my CCSVI procedure? And more bathroom trips at night.
CD

Hi CD!
I take my 4,5 mg after 9 PM - I also know about the information I may take it in the morning. Well, I try to be in bed around 10 PM but I often fall asleep after 11 PM - depends a lot on how my sleeping pill works and how much stress I have.
I need at least 10 hours of sleep, however it takes me very long to wake up, to get up and couple of hours until I can function at least lets say OK. It was before the LDN the same story.
Actually I can try to start with LDN from tomorrow morning. I started to have nightmares when I was 6 - so long time before LDN and I still have nightmares very often. Since my last relapse in April 2011 - I also have to visit the bathroom at least once per night - it was not like this before my last (14th relapse).
Good luck!
Erika

_________________
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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PostPosted: Sat Sep 03, 2011 12:31 am 
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Location: Slovakia, Europe
ErikaSlovakia wrote:
Actually I can try to start with LDN from tomorrow morning....
Erika

The first week with LDN in the morning - I do not feel any changes at all so far. I keep testing it in the morning.
P.S. I am 22 months after my CCSVI procedure in Poland. Still getting worse.
Erika

_________________
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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PostPosted: Sun Sep 04, 2011 5:38 pm 
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Joined: Sun Dec 19, 2010 4:00 pm
Posts: 216
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Hi Erika,
I'm so sorry to hear that you are getting worse, post 22 months ago having the CCSVI procedure. That stinks! What are your plans, if any, for now?

Are you getting worse because of blockages or other unknown reasons? You think the LDN is not helping you anymore, or never did help?
CD

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Where there is a will, there is a way. "HOPE"

CCSVI Procedure December 2010


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PostPosted: Wed Sep 07, 2011 12:56 am 
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Joined: Wed Jul 29, 2009 3:00 pm
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Location: Slovakia, Europe
CD wrote:
Hi Erika,
I'm so sorry to hear that you are getting worse, post 22 months ago having the CCSVI procedure. That stinks! What are your plans, if any, for now?

Are you getting worse because of blockages or other unknown reasons? You think the LDN is not helping you anymore, or never did help?
CD

Hi CD!
Well, I have been getting worse since 13 months after my procedure. I was better only the first 33 days. I had 2 relapses so far but I am SPMS still with relapses manifestation.
Between the first month and 13th month I felt the same as before the procedure. There are so many posts on TIMS that people are not simply able to follow everything.
I had control venography 14 months after my procedure. Doppler was let´s say strange but venography was negative.
I still believe LDN helps me. My only plan is the nursing home. We have only one bathroom at home so I cannot stay here. As they take almost all my money I will have to stop my LDN as well.
LDN DID help me a lot in 2008. I was on a wheelchair for short time. I am still able to walk just extremely weak.
No, to be honest I do not have any plans.
Erika

_________________
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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