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!!!

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!!

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 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 .

Thanks!

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!