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Old 08-25-2008, 02:42 PM #1
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Yes, I do indeed remember your esophageal spasms, Chelsae!

And I remember that drive-in where they didn't believe in writing your order down on paper -- instead, they just memorized everything and pointed at you when it was ready.

I'm very happy to know that you are on LDN and having good results.

And Kelly, woohoo for receiving your first bottle! I think I'm kinda jealous that everyone else gets to increase their dosage after 3 weeks. I'm at 3 weeks right now -- maybe I'll take an extra capsule tonight, just to see what happens.
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Old 08-25-2008, 03:17 PM #2
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They still do that... though they do take plastic now Rochelle. Memorizing... it's amazing, I remember when I could do it!

Kelly, good luck. I didn't notice much until I got up to 3mg. When I MISS it... well, I'd rather give birth than deal with the pain it causes to miss it! But that's the only reference I can think of as far as labor. lol

Rochelle, I use liquid, so I was able to increase .5 at a time. 1, 1.5, 2, 2.5, 3, 3.5, 4.... I'm not sure I would have gone up so quickly if I had to double it each time.

But yes... I love my LDN. So much that I am perfectly willing to have a surgery knowing I can't have pain meds afterwards. I know I am the exception and most people don't get such drastic results. So I'm just thankful I'm one of the lucky few.

Besides, I am used to doctor's looking at me like I'm nuts.

Quote:
Originally Posted by Twinkletoes View Post
Yes, I do indeed remember your esophageal spasms, Chelsae!

And I remember that drive-in where they didn't believe in writing your order down on paper -- instead, they just memorized everything and pointed at you when it was ready.

I'm very happy to know that you are on LDN and having good results.

And Kelly, woohoo for receiving your first bottle! I think I'm kinda jealous that everyone else gets to increase their dosage after 3 weeks. I'm at 3 weeks right now -- maybe I'll take an extra capsule tonight, just to see what happens.
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Old 08-26-2008, 09:40 AM #3
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Ok ya'll....I took my first 1.5 mg dose of LDN last night. I didn't sleep well but I never have so it wasn't anything unusual. I didn't want to take any Tylenol PM with my first dose - I can always nap during the day if I get too sleepy but I'm really trying not to.

The only thing I noticed is that the "itchies", which I seem to always have at some point on my body, seemed to be all over me last night and I just could not get comfortable. Now, this could be from me stopping the Neurontin and the Baclofen OR from me tapering down my dose of Zoloft. Or from a combo of all three! I have an itchy back most of the time and my Neuro said it's definitely the MS.

The only difference I notice today is that my right leg doesn't hurt - and it had been hurting 24/7.

My goal is to stop taking the Neurontin, Baclofen and Zoloft altogether. I will still have my thyroid med and my BP med. And of course the LDN.

I was just so tired of pumping my body full of different chemicals - I probably glowed in the dark when I was on everything!

Can't wait to take my second dose tonight!!
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Old 08-26-2008, 10:55 AM #4
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Quote:
Originally Posted by herekitty1960 View Post
Ok ya'll....I took my first 1.5 mg dose of LDN last night. I didn't sleep well but I never have so it wasn't anything unusual. I didn't want to take any Tylenol PM with my first dose - I can always nap during the day if I get too sleepy but I'm really trying not to.

The only thing I noticed is that the "itchies", which I seem to always have at some point on my body, seemed to be all over me last night and I just could not get comfortable. Now, this could be from me stopping the Neurontin and the Baclofen OR from me tapering down my dose of Zoloft. Or from a combo of all three! I have an itchy back most of the time and my Neuro said it's definitely the MS.

The only difference I notice today is that my right leg doesn't hurt - and it had been hurting 24/7.

My goal is to stop taking the Neurontin, Baclofen and Zoloft altogether. I will still have my thyroid med and my BP med. And of course the LDN.

I was just so tired of pumping my body full of different chemicals - I probably glowed in the dark when I was on everything!

Can't wait to take my second dose tonight!!
OMGoodness, Kelly. What are we going to do about you ‘n Frank?

While LDN might ultimately help with a lot of the symptoms that you take Neurontin, Baclofen and Zoloft for, it is highly unlikely to help much until you are at a therapeutic dosage (at least 3.0mg), and stable for a while on it. If you manage to wean off all those potent drugs with only 1.5mg of LDN, then you probably could have done without them anyway.

As far as the itchies, I still get them even on LDN. Mine are limited to a few select spots, and are intermittent, but they are troublesome when they come on (usually stimulated by heat). I have found ice packs very helpful, but that isn’t a good option when you have many spots that are bothering you. In that case, I’ve used antihistimines.

The MS-itchies are misfired pain signals, and (if this is not due to the other changes you’ve made with meds) LDN CAN stimulate some symptoms to flare up at first, usually only for a few weeks. For Sally, it was stiffness, for me it was spasticity . . . but I've heard of all sorts of fairly minor “stirrings” that have occurred. The theory is that LDN is busy wrestling up our immune system (my explanation, not “official”), so we may go through some transitory changes for a little while. These will calm down within a few weeks, OR if they occurred when you upped the dosage, you may decide to try again later . . .

According to Dr Bob Lawrence (a major proponent for LDN), the more official reason that this may happen is as follows:

Quote:
For those of you in the first 3 months of LDN therapy Dr. Bob Lawrence from the UK who has MS & uses LDN himself explains why the temporary increase in MS symptoms.

When starting this LDN (Low Dose Naltrexone) therapy in the treatment of MS, there may also be some initial transient, though temporary, increase in MS symptoms.

Experience in using this method has demonstrated most commonly, such as disturbed sleep, occasionally with vivid, bizarre and disturbing dreams, tiredness, fatigue, spasm and pain. These increased symptoms would not normally be expected to last more than seven to ten days.

Rarely, other transient symptoms have included more severe pain and spasm, headache, diarrhea or vomiting. These additional symptoms would appear to be associated with the previous frequent use of strong analgesics, which effectively create an addiction and dependency, thus increasing the body's sensitivity to pain. This temporary increase in symptoms may also perhaps be explained when we consider the manner in which this drug is expected to work.

Initially, MS occurs due to a reduction in the activity of the controlling influence of the suppressor T-cells within the immune system. During an acute relapse, the overall number of T-cells is reduced, the normal balance of helper T-cells and suppressor T-cells is disrupted and the damaging helper (CD-4) T-cells tend to predominate. This is the situation most pronounced during an acute relapse but occurs similarly, but to a lesser extent, in chronic progressive MS. Under the influence of LDN there will be an expected increase in the overall numbers of T-cells but, because the CD-4, helper T-cells tend to predominate at this time, an increase in their numbers will expectedly tend to increase MS symptoms. It is only when the numbers of suppressor T-cells effectively "catch up" that the normal balance is restored and symptoms once again diminish and improve.

http://ldn.proboards3.com/index.cgi?...lay&thread=148
I didn’t sleep well for the first few days that I moved up on the LDN, each time, but I was never worse for wear the next day (still had more energy then pre-LDN). Additionally, I had had terrible bouts of insomnia over the years, but once I stabilized on LDN, that has not been a problem for me any more.

Glad to hear your leg pain is gone. I had had terrible leg and arm spasticity for years, and it was almost gone within a few days. Also, I noticed great improvement in my bladder function quite early on.

Silver Lining, I ran across this too:

Quote:
In addition, because LDN will also block the analgesic effects of any opiate drugs (includes codeine, dihydrocodeine, morphine, pethidine or diamorphine) presently being taken, the use of LDN will initially greatly increase the level of pain experienced. It is therefore advisable that any opiate-like drugs be discontinued at least two weeks before this treatment is initiated. When starting the treatment it is essential that any untoward or adverse side-effects are reported immediately so that the treatment process can be further assessed and, if necessary, modified.
So it sounds like perhaps the “increased pain” phenomenon might be a transient thing . . . although you and your friend weren’t on any of those meds, right?

Cherie

(BTW, my cholesterol dropped to normal levels, and stayed there, after several months on 4.5mg LDN ... but that’s another story.)
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Old 08-26-2008, 12:15 PM #5
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I've had the "itchies" for quite some time now - they just seem more noticeable at night when I'm trying to go to sleep. I've always had them on my back - that spot that can't be reached from above or below......right smack in the middle. I've become quite the contortionist!

I don't feel the need for a nap today even though I didn't sleep well last night. I've finally come to the conclusion that I'm just one of those people who doesn't need a lot of sleep. If I can get 4-5 hours of consistent sleep a night then I'm good to go. When I was on Neurontin and Baclofen I was napping all the time. I feel much better now that those two drugs are out of my system. Now to just get off the Zoloft.
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Old 08-26-2008, 12:31 PM #6
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Cherie - No neither of us were on any of those meds. We are probably just weird, I'm always the 1% that something happens to. MS is the most "normal" diagnosis we've gotten in my family.

Quote:
Originally Posted by herekitty1960 View Post
I've finally come to the conclusion that I'm just one of those people who doesn't need a lot of sleep. If I can get 4-5 hours of consistent sleep a night then I'm good to go.
I have noticed the last few days that my imaginary bug bites and itches are back with a vengance. I'm not sure why. But if they really drive me nuts I take a neurontin. I would go ahead and do that if it keeps you from sleeping.

I am the same way as far as sleep goes. Went to bed at 3am, woke up at 8am...have more energy than anyday I sleep more than 6 hours. I am exhausted if I sleep that long. It allows me to spend more time with my kids because I can get most of the cleaning/laundry done while they sleep for 5 hours before I do, so I don't have to do it during the day. My fatigue is much better on LDN.

I'm also the same way with food. My body, literally seems to not need it. It is not unusual for me to forget to eat for days on end. I don't get tired, or weak or dizzy. As long as I keep drinking I am just fine. This was an issue even before LDN and Wellbutrin, so although they probably aren't helping it they aren't making it worse.

My doctor says I'm just incredibly weird. It doesn't take a medical degree to figure THAT out!
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Old 08-26-2008, 12:39 PM #7
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Originally Posted by SilverLining View Post
I'm also the same way with food. My body, literally seems to not need it. It is not unusual for me to forget to eat for days on end. I don't get tired, or weak or dizzy. As long as I keep drinking I am just fine. This was an issue even before LDN and Wellbutrin, so although they probably aren't helping it they aren't making it worse.

The doctor told me that I might "forget" to eat!! I laughed! He said "no, I'm serious" and he had my undivided attention at that point.

Ever since I have stopped the Neurontin and Baclofen I have noticed that I don't have much of an appetite. I think they were making me hungry. I gained 37 pounds while on those two meds. If the LDN helps me take it off then that's a bonus - it's not my reason for taking it.

Even if I get sleepy this afternoon I won't nap. I'd rather go to bed at 9 PM and see if I can sleep. The doctor said that OTC sleep aids like Tylenol PM can be taken while on LDN. If I need to I'll take it...I'm just trying my best not to take any more than I have to.
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