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Hi all, I am new to this forum and just started taking LDN from medmex 10 days ago. I started out 1.5 and now am up to 2.5mg( cc on my syringe). I have read that it takes awhile for things to calm down after starting but all my old symptoms are coming back, but I am scared! I am on copaxone too ( every other day) and was doing ok except for extreme fatigue which I thought LDN might help. I have trouble falling asleep, more shaking, joint pain, and feel " out of it and dizzy) like there is a weak spot in my brain or something with a stiff neck. I was dx 12/02 and was in bed for 5 weeks and had this same feeling in my head/neck. I have never had trouble walking, thank God! Once I get to 3mg how long should it be before I feel like I did before LDN? I want to make sure I am not hurting myself as I feel terrible. No new symptoms, just the old ones in full force!! thanks for any advise, take care

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Hi Jeanief,

I have been on LDN for 14 months now - acquired from the same source. I have not had another exacerbation in the last 14 months. My previous exacerbations were significant with pronounced, dramatic deficits. I was averaging two or three per year prior to starting the LDN.

I also experienced a return of symptoms after beginning the LDN. In addition, I had mild nausea, headaches, and stiffness as well - this lasted about two months. I never changed the dosage amount - went in at 4.5mg and stuck with it and have no regrets. All of the alarming symptoms have subsided too.

Are you taking any supplements? I take quite a few supplements in addition to the LDN. I stopped the supplements for a few months and my energy level dropped significantly and I was unable to sleep; yet, incredibly tired - started the supplements again and now have some energy and most importantly I can sleep again.

In other words, I think the LDN is preventing additional exacerbations/progression, but I think it helps to do everything possible to improve our overall health as well. If you search this site, possibly under Natural Approach, I think you'll find a significant amount of information regarding supplements.

Take Care!

-Cindy

Jeanief wrote:Hi all, I am new to this forum and just started taking LDN from medmex 10 days ago. I started out 1.5 and now am up to 2.5mg( cc on my syringe). I have read that it takes awhile for things to calm down after starting but all my old symptoms are coming back, but I am scared! I am on copaxone too ( every other day) and was doing ok except for extreme fatigue which I thought LDN might help. I have trouble falling asleep, more shaking, joint pain, and feel " out of it and dizzy) like there is a weak spot in my brain or something with a stiff neck. I was dx 12/02 and was in bed for 5 weeks and had this same feeling in my head/neck. I have never had trouble walking, thank God! Once I get to 3mg how long should it be before I feel like I did before LDN? I want to make sure I am not hurting myself as I feel terrible. No new symptoms, just the old ones in full force!! thanks for any advise, take care

Hi Jeanie,
I beleive we have met on another forum but I'm not positive.
I am wondering if part of your problem is the dosage which you are taking. You may be having problems because your body is not producing enough endorphines and you are not getting the most benefit from the drug. Please read the post just down the page a ways:
Question on how it works posted by CureOrBust and go the second post by rasnet6
rasnet6 explains how LDN works and that may help you to understand why I am wondering if the problems that you are experiencing are because of your dosage. I have read many anecdotal experiences about LDN and it seems to me that invariably for those who begin with a very low dosage of LDN (1.5) they seem to have more problems than those who begin with 3.0mg. I don't know this is pure speculation on my part all I am trying to relate here is what I have read.
I hope maybe some else can help to answer this question.
Please keep us informed of how you are progressing. I started taking LDN 3.0mg on 1/20/06 and it has been great for me right from the start.
Wishing you the best and I'm sorry you are having so much trouble getting started on LDN.
Monica

Hi all , thanks for the info. Yes, I have posted on every LDN forum I can find as I am having trouble getting started. This is day 15 on 1.5mg and I still worse. I just started getting pain from my ms right before ldn, but now I really have joint pain! I am up till 2am trying to get to sleep. right after I take it I feel ok, it's whenI close my eyes I get waves of dizziness. In the morning I am super stiff( and was not before LDN), and really foggy feeling. NOW I DON'T KNOW WHAT TO DO... I did feel worse on 2.5 on day 5 and then went back to 1.5 right away. On my first dx in 12/02 I was in bed for 5 wks and could do much. My right hand and leg didn't work at all. After that I was ok except for extreme fatigue. And I mean extreme. None of the drugs for fatigue worked for me and thats where I was hoping ldn could help. I just want to make sure that I will get better like I was before LDN, and that taking LDN is not making me go backwards. WHAT WOULD YOU ALL DO? Up tp 3mg and really feel sick but hope it's doing someting OR stay at 1.5 until I feel better and then try to up the dose? For those who had symptoms, did you start at 3mg and have old symptoms for 2 months. thanks again, I am a worry wart. PS I am on supplements too and copaxone everyother day.

jeanief,

I am taking 3.0 mg and doing very well, that was my starting dose.
Copaxone is compatible with LDN and I would guess most supplements are ok with LDN but maybe you should list your supplements and maybe someone will see that one of them may be causing a problem.

I chose LDN because of fatigue, I had tried every other drug available and nothing worked. I took my first dose of 3.0 mg at 9:00pm, and the next morning fatigue and lead weights in my legs were gone.

Where are you getting your LDN from and are mixing it yourself or getting it already mixed?

Monica

Almost identical symptoms to Jeanief posted in 2006. Anyone know what her outcome was? Reading other posts and will stick it out though living with the lightheadness is beyond crazy making. Feel drunker then a skunk at times and I don't even drink!

Hi Jeanief, I came here and saw your posts and I would like to ask you what happened later? Did you increase or stopped the dosage?
I'm asking because when I read you, I found Many similarities with me and it can be good to know what happened with you.
Thanks

Hi @Dorita and @skullers, I have had negative symptoms similar to those of Jeanief, and I stopped the LDN as a result. I was on 1.25 for just over 2 weeks, and got tingling and burning in my feet from day 1 through the end of my LDN trial. I stopped as LDN began causing numbness in my feet. The tingling and burning in my feet ended upon stopping the LDN. Then 3 days after stopping LDN I had a MAJOR increase in symptoms. These included: stiffness in my neck, weakness and numbness in one side of the body (switching to the other on different days), fine motor skill challenges (brushing teeth, picking up (and dropping) things), difficulty walking, balance issues, eye issues, nausea, foot and hand sweating, etc. These are all new symptoms for me....none of them were present before LDN. I stopped LDN and will never, ever start again.

I am now 3 weeks past my last dose, and I'm still working to get my body back to pre-LDN days, and recovery is slow. Apparently, LDN can cause severe symptoms in some people, though you will never hear that from the LDN promoters. A miraculous cure for some patients does not negate the side effects that others have experienced. Before LDN I had some autoimmune issues, not involving neurology, and was simply taking one drug: insulin. I did not have MS...but it appears I now have experienced many of the symptoms of it, thanks (no thanks) to LDN. Be careful, and watch your symptoms. If you see anything like this, do not continue taking the drug. It doesn't matter if these symptoms are rare or that other people have miraculous recovery with LDN; if these symptoms happen to you at any time....LDN is not right for your body. IMO, it is too risky to think that an exacerbation from LDN will eventually transform into a full recovery. The sooner you stop, the less damage you will likely incur. I'm hopeful for a full recovery, but only time will tell.

P.S. I am thankful that this forum allows people to discuss all experiences with LDN, not just the positive ones. Only then can people make an informed decision on such an unusual drug that has long term effects. Best wishes, and be safe.

@Sandor
I've read in some other forums that candida overgrowth can lead to worsening the symptoms while on LDN therapy. There is also an approach against candida. Don't give up, test yourself and threat it if positive.