I Think it's keeping me walking as "well" as I am. I really don't know... but I started taking B1's when I went camping in the summer months because people told me B1 can keep mosquitoes from eating you alive. So I figured why not... I used to start taking it a day or two before heading out and then stopped when I got home.

Well, in July 2005 I went for over 2 weeks. And on the 14th day suddenly my legs felt Different - better - I stopped using a cane to walk the hill we were on. I didn't know what changed.. but then it hit me, MAYBE it was the B1.

So I started taking B1 100 MG with my LDN, just so I knew I took it each day. Last March (07) I was running out, so I bought Super B Complex, it had 100 MG B1, they were expensive and then I moved. I couldn't find them, still haven't found them! So I let them run out and within 3 days of not taking them, my legs started feeling weak (mainly my left one). So we stopped at a Vitamin Shoppe and I bought B1s. 2 days later I was ok again.

So I don't know if it really helps or I Just think it does, but I've been taking B1 100 or a Super B Complex with 100 MG B1 in it, ever since.

Whatever helps......it sounds like B1 works for you. To think you were taking it to repel mosquitoes and then to discover it helped your legs. Awesome.:cool:

Question About OTC Allergy/Sinus Meds
 

My allergies/sinuses have been giving me heck this weekend. Sneezing and stuffed up head - makes me very dizzy.

Can we take OTC meds like Advil Sinus or Zyrtec with LDN? I'm assuming we can because I've taken Benedryl with no problem.

Thanks!

I haven't heard anything against taking allergy meds with LDN, Kell. Go for it..:) .... Except, do allergy meds sometimes keep you up at night???

Only the non-drowsy kind...I have to take that early in the day.

I'll try some Benadryl tonight. If nothing else it should help with my back itching!

I can’t believe it. I have my own handwriting back! As my MS progressed, my handwriting became nearly unreadable even by me. But now with the improved manual dexterity that LDN has given back to me, my signature once again resembles MY signature. Also, I think my gate has improved. I still feel a little wobbly, but I walk much straighter.

I'm glad it's starting to work for you Marion. Just like how the disease affects us negatively, sometimes it takes a while for positive changes to be apparent from LDN.

Keep up the good work!

Cherie ;)

I take allergy meds (usually Benadryl for immediate s/t relief) with LDN, Kelly. It helps my itching AND burning.

Did it help your itching last night?

Cherie

Hey There.......Twinkletoes gave me this great link about LDN.

However, I can't read all of these posts!

A couple of questions:

1. Your neuro doesn't have to prescribe this?
2. Any sides?
3. Cost - more or less than Tysabri?
4. Really can notice changes? That is exciting.


I've just about given up on Tysabri. When I first started it I developed a severe sinus infection. I was off for several months got back on and when through 5 wks of the runs. Started it back in August, and almost have full blown case of pneumonia. My PCP treated me for the above illnesses. I should also say (with head hanging) that I smoke. He put me on predinsone last week and I feel better than I have in a while. I should also mention that while I was off Ty I felt really good. I have to contact neuro to update him on this last episode. I should also mention that I have been in a relapse for about the last 8 wks. I have tried Avonex/Rebif/Novantrone/ Copaxone/ Tysabri. I just really want something that will help me and not push me back for every step I take.

Thanks for listening but I'm just so :confused:

Wow, I hadn't realized we were at 330 posts in this thread! Holy cow! :eek:

There are a couple other LDN threads. Just click on "Search" (see bar above), click "tag search" and type in ldn. Happily, they are much shorter.

It's so nice to swallow capsules instead of jabbing myself. So inexpensive, too. I read quite a lot about it before beginning, and never could find a reason NOT to try it.

Been on LDN 6 weeks now. So far, so good. Worth a try, I'd say.

Good luck, whatever you decide, Deb. :hug:

momma I have had no side effects matter of fact a few things have changed nails are growing again my hair seems to be slowly thickening

I have stopped 5 pills davorcet klonopin lyrica tegretol and provogil I got a script for 3 month supply at 1.5 mg a night it cost me 29.00 plus shipping like $33 all total

it has help with spasm it was touch and go for a bit but the last 5 days or so they have subsided,(started my LDN on 08-08-08) the muscle tightness and pain are at a tolerable level some days it hurts most times its cause i over do it so that i see this as my fault not the meds.

dont need the speeder anymore and being limited to pain meds, because LDN and certain group of opiate pain meds they tend to wash each other out and are not as effective and you might end up taking more pain meds then you should, so I am using alleve which to my surprise is doing me good so far

yes some have had reg general doc prescribe it, and it was kind of weird at first I was hesitant to say I noticed a diff, but around the first week i was seeing a diff in energy and walking,

cog I am not so sure with me some days yes some days I am not smarter then mud. but so far this med has covered a number of ms effects that 5 pills were, some days perhaps not as well, but I am beyond happy, I am not taking all those other pills and occasionally i am sore or have spasm, but not any more than when i was on those 5 pills and over did it during the day

hope this helps some

forgot to say doc and me are slowly debating stopping copaxone, time will tell on that, I see it happening

Questions from MommaD.....

1. Your neuro doesn't have to prescribe this? - Nope, any Doc can prescribe.

2. Any sides? - Possible insomnia, a little leg stiffness and feeling good.

3. Cost - more or less than Tysabri? - Oh, about $50,000 less per year......or 20.00 per month..:D

4. Really can notice changes? That is exciting. Yes, more for some than others.

Now, don't be lazy Deb, and read this thread. It will answer most of your questions, in more detail. :) :hug:

Welcome, mamaD.

I'll give the most abbreviated version answers I can, for someone who may prefer that. ;)

1. Your neuro doesn't have to prescribe this?

Not necessarily. Your GP is more likely to be aware of this drug, as well as its safety profile. I would still come prepared with information from the Low Dose Naltrexone site (which means you SHOULD read and understand this information).

2. Any sides?

Start off slow at 1.5 mg, then 3.0mg, then 4.5mg. Side-effects are normally very minor to non-existent when gradually increasing dosage.

Can have slight “rush”, headache and/or nausea the first week or so. Make sure to take it down with a glass of water.

MAY 'stir up' MS symptoms initially (usually no more then 3 weeks), while your body attempts to *re-boot* (lack of a better word).

May experience "lively" dreams; most often a temporary side-effect. Not scary though, like some antibiotics are. :eek: :)

If side-effects become troublesome upon increasing dosage, go back down for a week or two, then try again.

NOTE: LDN IS NOT TO BE COMBINED WITH NARCOTICS, CODEINE OR CRABS.

3. Cost - more or less than Tysabri?

Tysabri is $50,000 - $100,00 a year. LDN is about $10 – $20 per month (but sometimes not covered by your insurance.)

4. Really can notice changes? That is exciting.

For me (almost 18 yrs into the disease; RRMS):

- spasticity PAIN, gone
- claw hand, gone
- fatigue, improved
- better attitude and energy levels
- bladder/bowel function, improved substantially
- able to go off antidepressants (lost 30 lbs)
- take NO other symptom mgmt drugs, except occasional Naproxen
- reduced EDSS (disability) by one point in 9 months
- remained disease progression stable
- have had one attack in 3 ½ yrs, due to an untreated infection. (Was experiencing 4 attacks per year when I went on LDN)

BTW, LDN can be combined with Copaxone (if desired), and is being used "off-label" for MS. Discuss your current meds with Skip of Skip's Pharmacy in Florida. He is GREAT at explaining things, and most experienced at compounding it.

Phew, I'm out of breath . . .

Cherie

Well thanks Frank and Cherie...I guess I'm the lazy one..:p

lol saving your energy for the buckeyes lost this weekend:yikes: how dare me

Momma I will say another thing I was scared I had weened myself all my meds and was worried what if this happens or that, I was fine with no meds and waiting for the ldn to build, and too my surprise it was about a week i felt a change

I forgot about the potential for insomnia, Sally. That was an issue for me, but as I've mentioned before, I none the worse for wear because of it.

Well between us, we hopefully covered off the most important points for mamaD to consider, before she makes a decision on whether to bother further researching this option anyway ...

Cherie

Those of you who still buy your LDN online.... where do you guys get it? The place I got it before doesn't have it anymore. That is about half the cost of the prescription... so I'd like to go that route again if I can find a place that has it.

Thanks!

In my search I found this... looks interesting!

http://www.amazon.com/gp/product/0786437154

Do you have a rx for it? If you don't, the options are more limited . . .

Cherie

SL, are you talking about making your own LDN from the Revia Tablets?

I get actual Naltrexone, I haven't gotten Revia. Though I've seen it for sale that's not what I got.

I answered my own question though. lol I could only find it for outrageous prices, like $12 a pill. (And many places were like $250 for 30 pills + 4 free viagra pills....wth? lol)

Then I remembered River Pharmacy had it before... and they did this time too. $196 for 600 days worth. Getting LDN compounded at the pharmacy, for 600 days worth, would be well over $600 (about $30 a month, not all at once even at my pharmacy where they would discount it). That's why I order it online, much much cheaper.

If there was a $100 difference I would likely go with convenience and get it here. But, $400 difference? I need that $400 to feed my kids. :)

I went through Skips Pharmacy online, http://www.skipspharmacy.com/

Sally you did well, I also missed the insomnia, mainly cause I had it b4 LDN I also liked your other side effect, feeling good

Hey Yall, thanks for all the input. I am definitely going to investigate this more, but now I have a start.

I have left Houston, (didn't want to see Ike), so won't be back until next week. Computer use is limited.

Take Care & Be Safe

and a BIG THANK YOU to all of you for answering my questions!

Glad you've left the area....please stay safe. I'm praying for everyone in his path.

Thanks so much for that link to Amazon. I looked it up and have ordered the book. It should be shipped out around October 6th. It looks very interesting.

I have a friend - actually a former co-worker - who was dx with ALS about the same time as I was with MS. I've already talked to him about LDN and I'm going to have lunch with him and his wife next week. They're very excited about trying it. I pray that it helps him....he's just been through so much.

wow
 

My nails are growing fast, too!! My hair has always grown fast so I'm anxious to see how much it grows between now and my next trim.

These are wonderful benefits!! :D

I thought you might like to re-read this, Kelly..:)

http://neurotalk.psychcentral.com/post334478-59.html

I so hope it helps too, Kelly, and I will be praying for him. ALS is the nastiest cruelest disease of all..:mad:

TGIF hmm i have thought the last two days were friday so De javue(sp?) big time here:)

Hope this finds all doing well MommaD am glad you left dodge, hope you fair well through this storm and all down that way, be careful...

Well yesterday was a good day, lately not sure whats up been tired plus stress of the kid ordeal I am sure interfered with life and MS this past ten days, but I got a lot done in a small amount of time, almost 3 hrs I ripped out the privy and installed a new one, made a frame for a screen and screened it, made some of the fine cut tiles I needed for kitchen floor and installed them, cleaned up, a few trips to stores, sort of paying for it but not bad actually, the bigger problem is every time these dang storms come near the US my body feels it way up here in ill of noise:grin:

Ever since i fractured my back way back when, it stinks lets just leave it at that, :Bang-Head:

so have a small amount of trouble with MS stuff, vision is a bit foggy today and that happens when i do too much, but thats about it an occasional spasm, so like I said not doing too bad ms wise, more of barometric pressure issues,

hope you all have a wonderful weekend and a safe one


peace

Frank, we might only have the physical or emotional energy to get through what needs to get done . . . but I was relieved to have that after two years of having none. Some days are pretty good, some days not so much . . . but at least they are not all a choice of really BAD or much WORSE. :)

Cherie

I agree Cherie this is better than how it was, so I am not going to complain, I am better off already and only been on it a month

happy friday everyone

Mornin' everyone....I've been awake since 3 AM. The cat got sick on the carpet in my bedroom so I had to get up and take care of that so it wouldn't leave a stain. After that...I was wide awake! Cat is now sound asleep in my bed!!! :rolleyes:

This past week and weekend have been interesting. My sinuses are giving me a rough time. I guess it's the humidity or the change in temps or whatever...I don't know....I just know that my head has been stuffy and my spasticity has been worse especially in my arms and legs. My balance has also been way off but I attribute that to my stopped up head. Even before MS I'd get tipsy and off-balance whenever I'd have sinus problems.

I'm still taking my 3.0 mg dose faithfully before bedtime...usually between 8:30 - 9:00 PM. I'm tempted to go up to 4.5 and see how that affects me. If it's not good then I can always go back to 3.0 mg. I've been on the 3.0 for 2 full weeks now. Sally, Cherie and LarryLDN I need your advice!! :p

Other than the sinus stuff I have felt good and not needed a nap. I did take Antivert the other day because I was feeling sick due to being so off-balance and that put me to sleep but other than a "drug-induced nap" I haven't felt the need for one.

So far so good!! :) How's everyone else doing? This thread has been quiet lately so I guess that's a good thing!

I have been doing fairly well, in spite of my much-improved-but-still-a-problem poison ivy. It is clear that I am in a period of relative relief from my usually more severe MS symptoms. I’ve experienced good periods like this before, so I think it would be premature to attribute this to LDN. That having been said, I am pleased to report that my tremors have not returned. I do attribute that to LDN since the first time I experienced any form of relief of that symptom was within days of starting LDN. I am also going to cautiously say that my mobility is improved. My gait, unlike my previously omnipresent tremors, does normally vary widely in quality. Some days it isn’t all that difficult to imitate normal walking for quite a few yards before my body screams for me to sit down. On other days I have to hobble around in fear of tripping over my own shadow. I will say, though, that I have managed to string together quite a few of those “good walking” days lately. Is it the LDN? Only time will tell.

How about you other LDNers? How are you doing?

Kelly, go get checked for a sinus infection. Infection of any kind messes with my MS symptoms BAD!

As far as moving up, I would wait till your fluxuating symptoms (perhaps due to your sinuses) are under control.

My only other concern is that I am just about at the point where I ALWAYS have to lower my LDN because the weather is changing (and I've been on it for years!). I picked late Sept to try to move up to 4.5 mg the first time (and I did it in .5mg increments, not 1.5mg all at once), but I couldn't do it then. I think I got up to 4.0 mg (not even 4.5mg) and I had to go back down again until my body adapted to the weather change about 3 weeks later. I think I was able to do in two quick .75mg jumps after that.

Another option would be to dump the contents of the 1.5 mg pills into 1.5 mg of distilled water. You can do this with say 10 pills (15.0 mg) in 15.0 mg of distilled water, then each night take 2 X 1.5mg, PLUS .5 mg of the liquid LDN for a few weeks.

The next two weeks you can make up 30 mg of liquid, and add 1.0 mg to your nightly dosage of 2 X 1.5mg of pills. This way you can move up in much smaller increments.

If you try that, just make sure to keep the liquid LDN in the fridge, mix it well before you take it . . . and be warned that the stuff tastes like :eek: without any flavoring added (my pharmacy adds flavoring to my liquid LDN).

Some people START at 4.5mg though, so you might not have any issues either.

Cherie

hello all thank you Cherie for that. I am happy at three and dont want to mess with it, should I want to raise it? 3 seems to be a nice number with LDN

Frank, according to Dr B, we are protected on anywhere from 3.0 mg and up, so if you are satisfied with that level, then why not stick with it for a long while. You can always try anytime later if you feel it might help more.

A lot of men (and small/petite women) seem to have trouble going above 3.0 mg anyway . . . so you might be at the max you can tolerate anyway.

Cherie

I just found this post.

I have a suggestion:
While thiamine B1 does work for neuro issues there is a better version of it. 100mg is also a pretty low dose. Most neuropathy interventions with Thiamine are 300mg a day in divided doses.

However, in Europe and now here is a new improved, and recently lowered in price version called Benfotiamine. This form of B1 stays in the body longer and is fat soluble and helps the nerves better. This used to be very expensive but lately it has come down in price significantly.
(those of us on the Peripheral Neuropathy forum here buy ours at www.iherb.com) I have not seen this in stores, so on-line is where you will find it. I am using Doctor's Best brand.

When you first start on it, 300mg a day (2 caps) is a good start.
After a month or so, if you see improvement, you may be able to coast at 150mg/day.
Most of the research into benfotiamine involves the peripheral nervous system. I have not found articles showing central CNS effects. However, people with MS are just as prone to insulin resistance or prediabetes, or diabetes, and the peripheral neurological pain can confuse diagnosis and be actually comorbid.

Thiamine is non toxic and not dangerous so it is worth a try for some here.

Thanks, Cherie. I've been taking Benedryl but it only seems to make me sleepy...doesn't really help the sinus troubles. I'm thinking it might be allergies and not an infection because we are under a ragweed/pollen alert here. Seems they are out in full force right now. I think I will make an appointment with the doctor anyway just to be on the safe side.

Can I ask you a question? How did you know that 4.5 was too much for you? What sx did you have? Once you went back to the lower dose were you okay and did you stay at that dose? Guess that was three questions....oops :o.

Thanks!

Ut oh.
 

Ut oh!

Right on the heels of my poison ivy incident, I have huge hives all over my body. When my PCP asked me if I was taking any new drugs, my heart sank. I told her about the LDN. I also told her how well I am doing on it, and how much it has helped me, so she didn’t say to stop taking it. I now have a new ten-day tapering course of Prednisone. I don’t think it is the LDN that is causing the hives because I was taking it for three weeks before I got them. I really hope that the hives are a result of my body still being upset about the poison ivy. When I got home, I Googled the word hives
, and I found out that twenty percent of all people will have a bad case of hives in their lifetime, and that in most instances the patient never finds out what caused them.

So now I am a scratchin’ and a hopein’.

finally found a Dr that will give me a Rx for LDN!

my shrink.. lol go figure (btw he says i am still not crazy) but he knew exactly what i was talking about and wrote it up for me today. going to start on the 1.5mg and if tolerated up to 3mg.. i have a bad history of not dealing with meds very well so he wanted to start me off on the lowest dose.

i am freakin excited!:yahoo: