Side Effects while on LDN...

stsolakos · Posted: Sun Dec 25, 2005 4:26 am Post subject:

Hi rick_w.

I can't understand what is exactly your type of MS. Perhaps you are in the middle of a relapse started a few days prior to starting LDN. Symptoms do not start immediatelly when a relapse starts. A few million cels must die first and it usually takes about a week.

You also don't specify the pharamacist and the filler. If it is Skip's, the tablets are for sure reliable, the dose is correctly compounded and the filler is avicel, which is a good filler for LDN.

Talk to your doctor and if he/she thinks it is a relapse start a course of steroids immediately. It is quite strange that LDN could do such harm within a couple of nights. Are these symptoms old?

Stavros
_________________
If God created MS, Devil would create Rebif to treat it!

mamahawk · Family Member Joined: Dec 29, 2005 Posts: 65

I had side effects while on LDN treatment for Multiple Sclerosis.

I am 33 years old

I am female

I have RR MS for diagnosed 10/05

I started LDN 12-22-05

I take 3mg's per night but will increase to 4.5mg either this month or next

I obtained my LDN from The Medicine Shoppe in Canandaigua, NY but just found a local compounding pharmacy which will save me $10 in shipping charges.

The filler used was calcium carbonate but the new pharmacy will be doing acidophilus

My doctor was Dr. Jeffrey Esper in Erie PA

I have the following known allergies: none

I was also taking the following medicines at the time:
Copaxone 1ml/subQ daily which I am stopping due to site reactions when this shipment is used up.

My side effects with LDN are vivid dreams, repetitive waking the first 2 weeks, spacey feelings at times. Also-- feel really great, more energy than I have had in years and a marked increase in feelings of just general contentedness/well-being.

Will be staying on LDN... and trying to decide if I should try the ABX regimen....

rick_w · Newbie Joined: Dec 25, 2005 Posts: 2

I have RR ms. I didnt have a relaspe prior to taking LDN. I never had these symptons before. LDN caused this. There is no othjer answer. Now I am left numb from the chest down both legs. My feet ache. I havbe trouble walking. And these symtons are not going away. I wish I never took that drug. I don't know what filler was used. I took 3 mgs for this drug for 4 nights and it ruined me.

I can't understand what is exactly your type of MS. Perhaps you are in the middle of a relapse started a few days prior to starting LDN. Symptoms do not start immediatelly when a relapse starts. A few million cels must die first and it usually takes about a week.

You also don't specify the pharamacist and the filler. If it is Skip's, the tablets are for sure reliable, the dose is correctly compounded and the filler is avicel, which is a good filler for LDN.

Talk to your doctor and if he/she thinks it is a relapse start a course of steroids immediately. It is quite strange that LDN could do such harm within a couple of nights. Are these symptoms old?

Stavros[/quote]

Interrupted · Newbie Joined: Jan 15, 2007 Posts: 9 Location: UK

Shayk · Family Elder Joined: Feb 07, 2004 Posts: 661

Interrupted

Welcome to the board. I'm sorry your initial experience with LDN has been so scary.

I've not tried LDN but since no one's replied yet you might want to take a look at some of the threads on the LDN Forum for more info. It looks like there's been some discussion among people with experiences similar to yours.

Let us know what you decide and how you do. Hopefully others with LDN experience will be along to offer their perspectives.

Wishing you the best

Sharon

becca · Family Member Joined: Dec 27, 2006 Posts: 35

if u really think it's the ldn then i would stop it. you already have ms thats enough. i took it for 8 months and never had any side affects, took it in hope of slowing down the need to go to the bathroom. smoking a joint is the only thing i find really helps. good luck with your decision, it"s flip a coin decision making with most of this stuff..

lyndacarol · Family Elder Joined: Dec 23, 2005 Posts: 749

Interrupted

With Shayk's encouragement:

lyndacarol · Family Elder Joined: Dec 23, 2005 Posts: 749

"I had NO side effects while on LDN treatment for Multiple Sclerosis.

I am _57_ years old.

I am _female_. (male/female)

I have RR MS diagnosis since 9/92 (unconfirmed SP for the last 7 years).

I tried LDN for 3 months (days/months/years) so far (if multiple times, provide info on latest attempt)

I take 3.0 mg's per night.

I obtained my LDN from local compounding pharmacist.

The filler used was Avicel.

I have the following known allergies: Sulfa drugs.

I was also taking the following medicines at the time: no prescriptions--supplements too numerous to list (important!)

My side effects with LDN were NONE."

CureOrBust · Posted: Mon Jan 22, 2007 1:22 am Post subject:

I have been on LDN for over a year. The only side effect that I may of had, was extra stiffness. I may of experienced this when I was at my worst, and had just started LDN. I say maybe because it may of just been the MS; but i think it was worse the day after taking it. maybe.

It has not stopped relapses.

gibbledygook · Posted: Mon Jan 22, 2007 10:19 am Post subject:

I tried ldn for a week and like cureo I suffered significant extra stiffness so I stopped. I tried the 4.5mg.
_________________
1st symptoms Jan 01, last edss by doc 6.5. 06/09 bilateral jugular occlusions treated with 2 4cm stents and 1 extra 2cm stent on left side

becca · Family Member Joined: Dec 27, 2006 Posts: 35

hi CureOrBust i go for hours(4or5) without going pee, even after some drinks in the evening. Only go once during the night, it gives me the feel of control over wether i go or not, and it just makes me feel good in general( less jumpy) .

Interrupted · Newbie Joined: Jan 15, 2007 Posts: 9 Location: UK

Thanks for the link, I will go have a look at that forum Idea

I haven't a clue whether it's the LDN or just coincidental.
Dr Gilhooly has told me to stop it for two weeks and then resume at 0.5ml because it sounds like a sensitivity.
This just depresses me to be honest because once again i'll be on nothing for weeks and am left in a right state, worse than i've ever been.

It's possible because I do seem to be ultra sensitive to most things I try, but now i'm um'ing and ah'ing over whether to ask for IV steroids to try and get me out of this hell that's been created at the moment where my legs barely work and my head can hardly function or cope with staying conscious Crying or Very sad

Man I wish I was one of the ones it worked well for straight off! Rolling Eyes

becca · Family Member Joined: Dec 27, 2006 Posts: 35

if u do decide to take steroids i think they will help. don"t feel bad about the ldn.

CureOrBust · Posted: Tue Jan 23, 2007 5:56 am Post subject:

becca · Family Member Joined: Dec 27, 2006 Posts: 35