posted
I wanted to get feedback on LDN- what is your experence if you are taking it? Are you taking it for auto immune/neuro symptoms?
Are you combining it with treatment protocol?
What is your LLMD's experience with LDN and treatment?
Thank you!
Posts: 200 | From New England | Registered: Dec 2009
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btmb03
Unregistered
posted
My LLMD has a lot of experience with LDN - says it helps about 50% of his pts. I started off at 1 mg at night..felt very 'drugged' even the next day so am just about to start the 0.5 mg LDN.
I have to say though that I always react 'weirdly' to meds, it's easy to tolerate (ie: not 'wierd' effects), some have had insomnia, anxiety with it..I reacted exactly the opposite.
It was rx'd for me to be able to tolerate my abx better. Hope that helps!
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posted
BTMBO3- what are your symptoms and did it infact allow you to tolerate abx better? Is the abx treatment working... how long have you been on LDN.
I just started back up on LDN again- I do think it is helping me get back to sleeping again since my pharmecutical crash/but too early to tell ( 1mg dose for almost a week now).
Posts: 200 | From New England | Registered: Dec 2009
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posted
i took LDN years ago for neuro sx. it worked for 8 months to stop progression. then after 8 mos, progression started again.
that is what led to my lyme blood test. At one point Dr K told me he wanted me to go on it again some time.
Posts: 830 | From Colorado | Registered: Mar 2005
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posted
I took LDN last year for a little while, but started having worsening sleep problems so I stopped.
MY LD has been asking me to take it again, so started a little over a week ago. Last night the sleep issues started. I'm going to continue since I believe I read that for some ppl the sleep issues resolve after a time.
I am taking 2 mg, maybe too much to start?
Posts: 847 | From upstateNY | Registered: Dec 2007
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posted
I'm starting it today or tomorrow (whenever it gets here). My doc told me to expect bad dreams and sleep problems for a week or two, but that they should resolve. She also said to start on no more than 1 mg and work up. Low and slow!
-------------------- dx: MS in 1998 2007 - Lyme suspected 2009 - Positive Lyme, MS worse. Now: Copaxone shots for MS gall bladder out 7/09 Ceftin, Zith, Septra LDN Acyclovir Monolaurin, DHEA, Pregnonelon, Curcumin Posts: 243 | From New Mexico | Registered: Feb 2007
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posted
Maybe I should cut mine in half for awhile. Haven't noticed any dreaming (that I can remember). Just the sleeping is a big issue.
Posts: 847 | From upstateNY | Registered: Dec 2007
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posted
Already had sleep problems, and 1 mg of ldn made them worse, also had bad leg cramps, despite what had been adequate Mg intake. So I have stopped it.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I already have sleep problems too. Take a ton of meds for sleep. I quit taking LDN last year for that reason, but they have been bugging me to start it again. And I can't cut them in half, they are capsules! Dang.
Posts: 847 | From upstateNY | Registered: Dec 2007
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posted
I took it for approximately 10 months and on the 2n and 3rd days experienced dramatic relief.more energy and negligible pain. then relapsed to status quo ante and stayed there till now when I stopped. sleep disturbance was a problem so I found it best to daytime dose. I only incorporated teasel during the ldn run. both treatments were ineffective for me
Posts: 9 | From orange cty ny | Registered: Dec 2006
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
For most people, the insomnia only lasts at most a few weeks. And, of course, it's ideal if you start with a low dose, like 2 mg or so, and work your way up.
A few people take it in the am, if they can't get used to the sleep issues.
It helped me a lot right away with energy, etc. Now it's hard to tell, but that's due to other problems.
I definitely think it's worth giving it a good try---or several tries, if necessary. On breaking up the capsules, you could get empty capsules and divide it up. Or just get your dr to rx a lower dose to start.
Posts: 3771 | From around | Registered: Mar 2008
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posted
I took my first dose last night. My doc told me to start real low and work up, so I opened one of the 1 mg capsules and poured part of it out and then took it.
I had no sleep problems at all, and in fact woke up feeling cheery today, which is not common! I also got the second fastest time on the crossword puzzle that I've been doign for a couple of years.
Don't know if it's the LDN, but I'm going to hope - I tend to be hyper-sensitive to any kind of med, which is why I'm only on herbals for now.
-------------------- dx: MS in 1998 2007 - Lyme suspected 2009 - Positive Lyme, MS worse. Now: Copaxone shots for MS gall bladder out 7/09 Ceftin, Zith, Septra LDN Acyclovir Monolaurin, DHEA, Pregnonelon, Curcumin Posts: 243 | From New Mexico | Registered: Feb 2007
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
I started on 0.5 mg. last night (I am sensitive to everything, have to ramp up) and had insomnia all night and feel like a wreck today. I had already known about the insomnia from previous Lymenet posts and had read that some people have to take it during the day even though it's really supposed to take it at night.
I may have to try daytime as I ramp up dosage because I can't afford to be this tired now, in addition to the Mepron fatigue I already have.
Also, I have Hashimoto's thyroiditis (which is one reason one of my docs wants me on it, to suppress the autoimmune attack) and the LDN website warns that those with Hashimoto's shouldn't go about 1.5 mg. because it can make one go hyperthyroid. But my doc who is a thyroid expert wants me to ramp up to 4.5, but we'll have to readjust thyroid meds if needed.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
I should mention that I take Lunesta for sleeping, maybe that counteracted any LDN side effects.
-------------------- dx: MS in 1998 2007 - Lyme suspected 2009 - Positive Lyme, MS worse. Now: Copaxone shots for MS gall bladder out 7/09 Ceftin, Zith, Septra LDN Acyclovir Monolaurin, DHEA, Pregnonelon, Curcumin Posts: 243 | From New Mexico | Registered: Feb 2007
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posted
I have not been sleeping more than 2 or 3 cumulative hours per night (with sleep medication) since I crashed and downward spiral into neuro hell from pharmecuticals (about 2months). I added LDN about 1mg (cutting tablet 4 ways!). Sleep is still really bad- but I actually think it is helping-- and neuro is getting better. Only a week so maybe too soon to tell. But so far I think it is helping to quiet my immune system. I'm dreaming alot more too.
Posts: 200 | From New England | Registered: Dec 2009
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
I just started it today. ARe we saying here that it helps for a period of time and then quits working?
mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
My LLMD says that about 50% of patients are helped by it, and the other half aren't. At most recent LLMD conference, Dr. H also said half of patients got a solid benefit from it.
I am NOT sensitive to many drugs, its amazing how much medicine I am on. I already had problems with insomnia, and my immune cell counts are low.
I started out at 4.5 mg, and for first 10 days, had very little problems with it, then I began to have horrific insomnia, despite all teh sleep medicine I take. So doc cut down the dose to 2 mg every other day, still had problems. Then started having other wierd problems like bed wetting, but I hung in there for three months, in the hopes of increasing my immune response.
And after three months, immune cell counts were actually down a little, after all that hell. And none of my symptoms improved.
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
If you do a search for my name, and low dose naltrexone, I posted a long one concerning why the drug sometimes seems to stop working, and what you can do to get it to work again.
I got the information from the best "LDN" MDs, so the info should be good
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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posted
I took LDN and started at 2 mg. had no problems with sleep and had increased energy. Then increased to 3 mg.- I did not have as much energy. Matter of fact, I believe that it did the opposite for me. If you google the LDN page, LDN is used also used to increase killer cells in AIDS patients, so it works as an immune modulator. If you do not have an autoimmune issue, it may boost the immune system. I think that happened to me. I also started an herbal protocol shortly after starting the LDN, so that may have had something to do with it also. Resveratrol is an immune modulator also, and I was taking that. I did a little experiment, because I was herxing too strongly. I stopped the LDN to see if that helped and it did.
I plan on adding it back in again and see what happens, except I may start back at 2 mgs or 3 mgs, but definitely not go back to 4 mgs, as my LLMD had me increase to, but never attempted.
Posts: 19 | From New York | Registered: Jan 2010
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
If LDN builds up in the Liver, and I do not know how often this happens, it will negate the effects of the drug.
Just as a precaution, I take my 4.5 mg dose 6 out of 8 days. Two days in a row without a dose.
I have not noticed any difference one way or another, but at least I know I am not retaining any extra that way.
I take LDN for Crohn's Disease, not Lyme, so my results are not comparable to most of yours.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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