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. :eek:

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! :hug:

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..:hug:

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! :p

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..:grouphug:

Okay here, esp. since I started taking Amantadine for fatigue. I feel like living again!

Pl,
I am sorry to hear that you are not feeling well. I am in a relapse too. I called Skip and asked him about the LDN. He said it is not a cure, people still can relapse on the drug, but maybe not so badly.

He said to up the dosage to 4.5 mg, if the Neuro would agree. I upped the dosage and I feel like I am getting over the relapse in record time too, like Kelly said.

Pl, also I don't think you are on LDN long enough to get a positive all over response yet. Only since August?

I even had Vertigo which was sort of new for me. I had in the past some double vision and dizziness but the spin and nauseous feeling is icky. Since I upped the dosage my spasticity is all gone too. I thought if I upped it, I might get more spasms. Weird, but good.

I had an MRI of my Brain, first since 2-2007, and no changes and no enhancement. Stable MRI. This relapse brought left sided numbness and the MS Hug worse, but my balance and gait were not effected. So I doubt steroids are needed. Vertigo is leaving after 3 weeks.

I have the MRI films and report but waiting for the Neuro to call and say the LDN has stabilized me. Also my blood work was normal.

Kelly, my Endo doctor called yesterday and upped the Thyroid med to double on the weekends only. I forgot to ask for generic, yours is cheaper than mine. i start this weekend, blood work showed still hypothyroid. I even called her to see if Vertigo was from the drug, she said no way.

So this is the first relapse ever, with new and old symptoms that seems to be going away early (knocking on wood). And my spasticity is gone since upping the LDN to 4.5 mg.. Who-Hoo

I had a good clinical exam by the Neuro, even though numb on the left side, face, head and vertigo, and a few other old issues. All seems to be getting better on the 4.5 LDN and 'REST".

PL, stress and moving are the worst. I relapsed so bad when those happened to me. Get more testing if you think you need it. I was bitten by about 10 or more ticks in the last few years. I had the bull's eye a three times, but show negative. I had Doxycyline a few times. Bugs love me. I am a bug magnet.

If bees could cure MS I would be cured. I have been bitten constantly by all kinds. Step out the front or back door and a spider or something gets me everyday. Being blonde I think I look like a sunflower or a yellow rose or mum.

Rest is the key, PL, even with LDN. We tend to feel better with energy and overdue it, or expect too much from the drug. :hug:

Trust me, the DMD's have never helped me like the LDN has. Maybe there are other drugs out there that might help other people, and more coming out of the pipeline, but for now this is still my drug of choice. JMO

:grouphug: to all of you.

I've been doing great! About a year and a half ago, I started having trouble with my right eye. Went to the optometrist and he said I had dry eye. (just one??) It didn't get any worse and I just lived with it. I started LDN in the middle of June and I've recently realized that my eye hasn't bothered me for a while now. Not sure if I should give LDN credit, but after all this time the only thing that changed was taking LDN....

C

That's wonderful, Carol!

I suffered through the DMD's at first....like most everyone does.....with no benefits and only painful and aggravating side effects and site reactions.

I wish everyone who's struggling with their DMD would just give LDN a try. I was skeptical at first, too, but now you couldn't PAY me to go back to an injectible. Especially when I saw no improvement and felt worse than I did before I even knew I had MS. :rolleyes:

Most neuro's (mine included) are protecting themselves from liability due to the fact that LDN isn't an approved MS treatment by the FDA. I could care less.....it works for me and that's all I'm going by. I often wonder if it's more $$ driven than anything. :mad:

thanks, all!

Hopefully this won't be as bad as the other relapses... I figure my disease is somewhat aggressive compared to average. They say the average annual relapse rate is like 1.2 or something right? And here I am coming up on number four in 10 months! With two of them bouts of transverse myelitis to boot!

I'm not willing to brave MS without LDN though. I trust the years of experience of Dr. Bihari and others whose patients disease progression basically stopped. I'm already at 4.5, I wonder if I need to bump it up a teeny bit till this is over?

In the case of LDN (low dose naltrexone), more is not better, so no, stay with your 4.5mg or reduce it to 3mg, for awhile.

Just received my new script of LDN from skips, along with a free bag of their Halloween candy..:yahoo::yahoo:

I got one last year, too! Hey, I'm going to need a refill in the next month.....may as well go ahead and get it now and take advantage of the goodie bag! :D

I'm still taking the 4.5 dose! Yea!

I am only on LDN 3mg. for 2 months, but have noticed the change
in symptoms for the better.

The fatigue is so much better and it has also helped with the pain for
the fibro. I got off the Tramadol, only now take neurontin twice a day.

I am now fighting the change of weather flu like symptoms. I have COPD
also and the weather change always affects me this time of year and get
a bad case of Bronchitis. So far ms symtoms have not worsen, which they\
usually do when this happens to me.

Keeping fingers crossed that everything stays stable.



Jappy :)

That's great, Jappy! Looking back I've noticed major improvements since taking LDN. It was so gradual that I didn't notice them all right away but looking back I can see how much I've improved. I've been on it now for a year. I hope it's always available to me......not sure what I'd do without it!

((((((((((Joyce)))))))))) Feel better..

Jappy, I hope you feel better soon. It's not the flu is it? Did you go to the doctor? Be careful around people during the next two seasons, for your COPD. I am glad the LDN is helping you. :hug:

Sally, I renewed and didn't get a goodie bag from Skip's. :cool:

My check in:
I think my relapse was over in record time, for me, 4 weeks. My brain had no changes on the MRI, but the Neuro thinks the MS hug might be a lesion on my T-spine. The Hug got bad. I don't know if I will get an MRI of that area. Let's see what the new health plan does to my Medical ins. :mad:

She mentioned Nuvigil for fatigue but said she likes to wait one year before prescribing something new. I think my fatigue is better since I upped the LDN to 4.5 mg like Skip said to do.

Then I asked her if she can prescribe Nuvigil, which is off label, why do I have to get the LDN from my PCP? She said we will talk about it in January. All this was done on the phone. Hmm!

Just wanted everyone to know that my episode with numb feet and legs is over! This only lasted a few weeks versus four months last time I had it (pre-LDN). I'm so excited! I never took prednisone or anything for it. All I did differently was increase my dosage of LDN from 3.0 mg to 4.5 mg. I'd tried to do that before and always got bad spasticity in my legs. This time it worked! :D

Great news, Kitty. My one and only attack while on LDN was MUCH easier than the two TM one's before getting on it.

Jappy, please be sure to get antibiotics if you have infection.

Cheri

Cheri: I have a dr. appt. tomorrow afternoon.

I thought that I could fight this one, I was starting to feel
better and today things are going down.

Wish me luck that it is nothing serious.


Jappy :Sick:

Poopy, Joyce. Let us know if he Doc helps you. I'm sorry..:hug:

im getting ready to put the LDN to the test folks. my wife and i are getting ready to move.
this should be interesting. we just got here two years ago and now we're looking at moving to houston texas.im anticipating bunches of stress with all this,especially trying to unload our house here.

Good luck, Flute. I hope it pulls you through..:hug:

Happy Moving Day!!!!:D

Doc said she believes I had the Swine Flu being I just got the reg.
flu vac. the beginning of the month.

But because of my crazy immune system, she is just saying that is what
it is. I did fight the worst of it. I am on antibiotics, sent me for a chest
x-ray, which she called back later and all was good with the lungs.

My Bronichal tubes were congested and inflamed. I was given
Albuterol Inhaler for that . I was so surprised how fast I was able to talk
clearer and breath better.

Advised not to be amongst a lot of people and children. I was going
away this coming Mon. & Tues. an overnite stay with friends at 3 casinos
but I canceled out when I first got sick. My Luck. Well I saved money
that's some good luck.

Jappy :(

Jappy, I'm glad you went to the doctor. It is so important especially this time of year with all the bugs going around. :)

The Swine Flu is not to fool with. Too bad you had to cancel, but that is for the best. You could pass it to others and get sicker yourself. Rest and be well soon.

Kitty, the 4.5 mg is good. I am glad I upped it. Cherie told me to call Skip with a question I had, and during my talk with Skip I happened to mention I was in a relapse, he said to up the dosage to 4.5. I am so glad I did call him. I don't think I would have upped the dosage otherwise.

I am glad it helped you too Kitty. Feeling better is so important to us, isn't it? Since we feel like crapola a lot of the time.

I wonder what it feels like to be 100 percent normal again. I think I totally have forgotten. We get so used to these odd and weird things happening to us, besides the usual diseases popping up.

Flutemaker, I hope your move works out okay for you and you don't have any problems with your MS. It is stressful indeed to move and the climate will be hotter. I hate the Winter and snow. I hope you do well in Texas.

I wish you lots of luck selling your present home. Maybe the first looker will buy it. You never know. Good luck.:)

just thought I'd check in and say HI

I'm in SW Florida for the last few weeks, drove down, caught a Bluegrass Festival in Palatka and headed to the SW afterwards to stay near family. I'm feeling pretty good in the heat and sun, I'm considering buying a condo down here and relocating

Nice to hear from you, Lar!!!:hug:

Nice to hear from you, Larry ... long time, no see.

Cherie

Been on the go since May, slowly, but steadily and stable ;)
:grouphug:

hope everyone is doing well also

Hi Larry,
Nice to see you drop by and I am glad you are doing well. I hope you enjoyed your trip to Florida. I wish I could move to a warmer climate.

I hate snow. I remember digging out our cars in your town, LOL. It was horrible. The snow trucks just plowed us back in. The roads were never cleared except the bigger ones. The individual blocks were forgotten.

Florida sounds good, or any place south of us. The trouble is my family loves the cold weather, so that is not going to happen.:(

I hope you find a nice condo to live in and enjoy the weather. Still seeing that Chiro doc in SI?

I am doing well and so glad I am on LDN. I upped it to 4.5 when I had a relapse, and it was a very mild relapse. I feel great. Thanks for our little talk. Next month I will be on LDN a year. December 15th. Whoo-whoo

Time flies when your having fun.;)

Take care Larry and let us know if or when you move.:hug: Be well.

Hello all you LDNers out there! This thread's been pretty quiet and I'm assuming everyone is feeling too good to post! :cool:

I've been doing great. Upped my dosage to 4.5 several weeks ago and haven't looked back since! :)

My wish this Christmas season is that everyone who is struggling with sx and relapses will give LDN a try. It's such an easy therapy.....and gives such wonderful results to so many. I know many Neuros and docs won't take the time to learn about LDN......but they aren't the ones suffering the effects of MS. They're just cashing in on all the perks they get from prescribing treatments that don't work nearly as well. Makes me mad when I think about it.

I hope everyone is doing well and enjoying the holiday season! :grouphug:

ME TOO!!!! Thanks, Kell, for this post. I am so sad when Peeps tell me their holier than thou Doc will not prescribe LDN for them..:mad: What's the harm, Doc, huh?? Isn't that what you have taken an oath to do...NO HARM???

OK, off my soapbox....BTW, I am doing well, now that the UTI has gone away. No ABs, just lots of cranberry caps and (((((LDN))))).:)

Come on in and tell us the good and/or the bad..We support you. :grouphug:

P.S. I'll bet, if the LDN peeps would start giving perks to the Docs, like big pharma does for the dmds, they'd start prescribing it..:rolleyes::mad:

I am new to this page. I have been on LDN for about a year now and have been able to get off my prozac and ambien (boy what wild dreams tho I have...so deep) I take 4.5 mg. I was thinking of talking to my neuro about 4-AP. I talked to a compunding pharmacist and he toldme the protocol that is usually started for 4-AP. Anyone else on this also?

Welcome, Snow, to Neurotalk and to the MS forum. How are you doing on LDN so far?

I know nothing about 4AP, but I believe others will come along and answer your Question.

Again, welcome, glad you found us..:hug:

Hi snowhite48 and welcome to NeuroTalk!

I've heard of 4-AP but couldn't afford both it and the LDN....and I was doing well on just the LDN so I didn't bother to try it. You might want to start a thread about 4-AP on the MS forum. You might get more responses if you post there, too.

Glad you've joined us here. It's a great group. :)