I've had to lower/increase the dosage of LDN when the weather changes, every year. The spasticity comes back (for me) in cold weather, but it usually takes me a few weeks (DUH!) every year to figure out what's going on . . . but when I do, I drop down to about 3.5 - 3.75mg, and I am good. I always work my way back up to 4.5mg within a few weeks though.

As far what happened last year with the infection, I had a broken root under a cap in my tooth. It took a while for my dentist to figure out what was causing the pain, but when he did he said that he could just keep putting this numbing med in so I could hold onto the tooth (molar) as long as I wanted.

What didn't occur to me is that every time it got "inflammed", it was actually infected.

Since I had that ongoing infection, my immune system got very weak. I think I got three bacterial infections, bronchitis, a couple of colds/flu's, some UTI's (with no notable symptoms, except MS ones), and I can't remember what else. ANY type of infection can cause us problems though.

My spinal lesions flared up every time I wasn't on antibiotics, and I was on/off them several times. When the lightbulb finally went on (about the tooth being the underlying cause), I had it removed. My spinal lesions quit acting up almost immediately, but by then I was left with some long-term (or permanent) damage, including heat sensitivity and numbness.

I am still at the same EDSS that I dropped to after 9 months of being on LDN, but I have more issues due to the 2007 infection year.

Cherie

Thanks, Cherie.

For those of us who don't know all the acronyms, here is a quick explanation of EDSS: http://www.mult-sclerosis.org/expand...atusscale.html

This thread is going to really help us LDN newbies avoid the pitfalls. Thanks for much for starting and maintaining it, Sally and Cherie. :hug:

Hi Chelsea, thanks so much for your report. So Happy you are doin so well on LDN..:)

I'm not surprised that your Friend had to dbl her dose of opiad pain med, if she was taking 25mg of LDN. It is, after all an opiad antagonist at that dose, especially.

At that dose, Naltrexone is working in a completely different way than the low dose works for us.. For us the 3 to 4.5mg works to, only block indorphins temporarily and then causes our endorphin level to increase, correcting our immune system so it does not attack our nerve myelin. (The simple explaination.:rolleyes:)

At 25mg, endorphins are being blocked for too long of a time to recoup. So, that dose would not work for us at all.

Keep checking in..:hug:

I got my prescription for LDN today!!! I'll start taking 1.5 mg. tonight. I take that dose for 3 weeks, then I start taking 3.0 mg. for 3 weeks, then 4.5 mg. for 3 weeks. I guess whichever dosage agrees with me is the one I'll stay on. I asked the doctor how I'd know if I couldn't tolerate the 4.5 mg. and he just said "oh, you'll know....just like you know when you're in labor." Geeze, I know what that feels like - I sure do hope this isn't as painful! :eek:

How long did it take for the vivid dreams to begin? I have some pretty vivid ones now...not scary just bizarre.

Not a problem, I didn't feel I could respond without reading the whole thread. I would have ended up responding 15 times. :rolleyes:


Nope different person, sorry. This friend is on LDN for MS, she takes 4mg. (My other friend is on 25mg specifically for PTSD.) Fentanyl and Morphine were the two that my friend with MS required twice the dose on. She stopped the LDN 3 days before surgery and did not start it again until she was done with the pain meds.


Yes that is what I mean. For example, my cramps are much more painful. My old shoulder and knee injuries from gymnastics are more painful. But my MS pain is almost non existent. If I get VERY stressed it comes back. I've learned to just take a Neurotin if I have to see my in laws, because I will need it.

My family has a huge history of drug addiction. Even before LDN I refused pain meds whenever possible. I didn't take any after my shoulder surgeries, once I left the hospital. So no, it has nothing to do with not having pain meds since I didn't have them before.


Nobody knows why it didn't work, but it was before LDN. It was during the diagnostic process when they did a Transesophageal echocardiagram to make sure my heart was okay. The Versed didn't work. On top of that the numbing stuff they used caused me to flare. This also explained my flaring after root canals. Any numbing stuff in the "kane" family causes me to flare.

I had esophageal spasms for a few weeks and couldn't eat. Twink will remember that... I accompanied her to my favorite eating establishment in the WORLD and I couldn't eat because I couldn't swallow. I had periodic issues with the spasms after... but not since starting LDN. Bentyl is what I used that finally worked to calm them down.

I started LDN in December and didn't have an issue. I don't like the cold but I dislike the heat much worse. I have always struggled with tolerating the heat.

My cognitive issues really are not that big of a deal, but they are to me. I won the spelling bee when I was like 10. Grammar and spelling has always been my strong point. Now it's not uncommon for me to mix up their and there... or spell something wrong that I KNOW how to spell. It's not a big deal, but it's like taking the ONE thing I was really good at away from me ya know?

Rochelle and Kitty, thanks. :)

There is no way I'm making another album. lol However there is no shortage of pictures on my blog http://upwithdownsutah.blogspot.com . You may not have seen that before since I was so worried about someone that wasn't supposed to know I have MS finding me. I gave up on that and told my in laws to get over it. :D I also still have my MS blog and recently started using it again. It may just turn into a "medical blog" and gets lots of attention now.

Funny how I always end up back here with you ladies when something comes up. lol

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. :cool: I'm at 3 weeks right now -- maybe I'll take an extra capsule tonight, just to see what happens.

:ROTFLMAO: No, nothing like having a baby, Kelly.

And, even if you have trouble going up at first, you can try again later. 3.0mg gives you the protection, you might just get more satisfaction with symptoms on 4.5 mg, ONCE you adapt.

For me, the spasticity starts to act up when I am too high. I've said that so many times on this thread though that I don't think anyone wouldn't recognize that they need to go down (temporarily or permanently) on the LDN if that occurs. Having a baby is definitely worse though. :ROTFLMAO:

I know many people who've started at 4.5 mg with no problems what-so-ever. :cool:

The majority of people don't have the dreams . . . and you might not have any more then what you do already. I don't get them at night at all, just during my naps . . . and they aren't bad, more like "adventurous". ;)

Good luck tonight. You aren't likely to feel much of anything on 1.5mg so don't be too concerned (or excited) just yet. :)

Cherie

I don't know what he meant by that, Kell. The only thing I noticed when going up to 4.5mg, too soon, was a leg stiffness I didn't like. Most of the early LDNers started on 4.5mg and did just fine on it.:)

The vivid dreams, if you have them, will not happen all the time and really are not bad dreams, just vivid. Don't worry, too much, about that.:hug:

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. :rolleyes: