Pink, give Skip's Pharmacy in Florida a call, as he can probably tell you of a local doctor who may rx it, and he can tell you if LDN is contradictory to any other drug you may be taking. However, many of us have found we don't need some of the strong pain management drugs any longer, once LDN gets to work ...

Also, there is some speculation that disease activity returns rapidly after ceasing Tysabri, and even some speculation that people may have a "rebound" effect ... where they may <perhaps> do "catch up" for the years they were stable on T. If that happens, LDN (or any drug following Tysabri) is up for quite a fight to try to control that process ... probably especially in the first 6 months.

Having said that, my disease process was extremely active when I first went on LDN, and it still did the trick.

Cherie

Thanks so much Cherie; I really appreciate your reply. I have the name of a Dr. but, not near. I also had not thought of calling Skips about the med. They have an excellent rep in ref to LDN so yes they will know. Just another call I have to make in the am LOL.

I want to thank you and everyone for helping me today. I had forgot about the "rebound" effect of going off of tysabri. I lost so much cog in my last attact, but I guess the good news is I recall some when mentioned. With life events I'm not as good. I seem to recall the info I value most and this disease scares the crap out of me. So, my brain values info on it more then a conversation about junk. I know it does not make sense.

What can I say, nothing makes sense about this junk!

Hi Pink,
I take Klonopin (Generic is Clonazepam) for tremors, it is in the benzo family, similar properties to Xanex, and not a narcotic. They work fine together for me.

LDN and Klonopin are sometimes used together for certain disorders. But to be sure call Skip. I use Skip's Pharmacy and he is excellent at answering my questions.

IMO, I don't believe Tysabri took away your attacks of MS. I don't think it works that way. It certainly didn't stop you from getting them. They would have gone into remission over time anyway.

I would get 4 relapses a year, that one would overlap the next one. It was horrible so I understand how you feel. It's scary.

LDN has helped me so much. I hope you get past all this crapola and can stop being attacked.

When I was on LDN I even lost some of my residual symptoms I had for so many years. It took about 8 months for that.

In the first few weeks I saw improvements right away. More energy and less brain fog. I hope you get started when you get it delivered to you.

Also tell us how you feel after you stop the TY. You didn't have many doses, so it may not make a difference in your health when you stop it. I know a few people who did not respond to TY. We are all unique that way.

LDN might give you a few odd sensations, like colorful dreaming or waking up for a few minutes, and going right back to sleep, in the beginning days. It goes away. Good luck to you Pink!

LDN in the news....

http://www.prweb.com/releases/2009/10/prweb2968694.htm

bad news on my end.... I have been on LDN since mid August, I am currently on 4.5 mg from Skip's... and I think I am having a freaking relapse.

I have been super stressed out and overworked from moving, and the day of my flight, I woke up with the right side of my trunk numb. My other relapses were like that---wake up and BAM, something has just gone numb. Now I'm feeling varying degrees of numbness down that right side to the knee, and my old sx are getting aggravated as well.

Darnit, darnit, darnit. I was hoping for six months of "remission" (even knowing that this MonSter never sleeps).....guess not.

Really, the only thing that prevented me from going crazy when I was diagnosed was knowing about LDN. Now, I'm not so sure that it's going to get me through this. I put in a call to Dr. Dake, the fellow who does procedures to treat stenosis in MS patients (CCSVI), but I don't think my insurance will cover it. I'm also thinking to do the IGeneX lyme tests.

any words of wisdom?

Words of wisdom for Poetic License: Nooohhhhhh!!! Put it in reverse gear! Don't relapse!

Could you explain why you want to do the Lyme testing? Just curious I guess. Do you think you have Lymes on top of MS?

I'm considering the Lyme testing because I never thoroughly ruled it out from the beginning and the fact that I am not responding well to the LDN raises some suspicions for me. I assume that not everyone will be a responder but given that the physicians who treat with LDN have such a low number of relapses I want to be sure that I don't *also* have lyme disease. I am fairly certain I do have MS though--my brain lesion was periventricular (sp?) which is classic for MS, plus I did have a LP positive for OCB.

Some of the people on the LDN yahoo group that were diagnosed with MS and did not respond to LDN explored lyme disease further and were diagnosed and benefited from antibiotic treatment. I'd hate to have something treatable that I was unaware of!

So sorry, PL, for your symptom flair, but it happens, even with LDN. You answered your own question, when you stated that you've been under a lot of extra stress, lately (Our worst enemy)

My hope for you is, that your LDN, helps to limit the time and effects of this flare. I hope that LDN will, eventially, work for you.

Checking for Lime, is always a good idea....also check for low levals of Vits B12 &/or D.

Good Wishes..

I've been on LDN for a little over a year and whenever I've had a flair up of sx it's been very short lived. My bout with numbness in my legs and feet is almost over.........it started about 3 weeks ago. Sure beats the months and months of sx I endured while on a DMD. I'm sure mine was due to a sinus infection and the change of seasons here. This time of year is always rough for me.

LDN is by no means a miracle "cure" but it sure does a good job of lessening the severity of any sx I might have. I've even gone up to a 4.5 mg dose and stayed there for over a month! I never could do that before due to spasticity but this time it worked so I'm sticking with it!

I've often been tempted to go off of the LDN for a few weeks just to see what effect it would have on me but I've become too spoiled to even want to try that! I have to say it's the best thing I could have done for myself. It's just a win-win situation for me. Rock bottom price for the meds and great results from taking them. I wish it would work this well for everyone who takes it.

BTW, how's everyone doing? This thread hasn't had many updates lately. I hope that means everyone is doing well.

Yeaaaaa, good for you Kelly.

I was thinking the same thing.....things must be good or, at least, acceptable, or we'd be hearing stuff. I hope that's it!

With all the change of weather symptoms, we are asking a lot of our LDN, but just when I'm ready to throw it out, it comes through for me. Some of it may be placibo, because I expect it to..LOL.

Holding us all together..