Re: a reaction to first dose

[Guest guest]

ine,

You are in a difficult situation. My heart goes out to you and your son.

My input: Don't stop LDN. It sounds as if he's having an exacerbation or has turned progressive. The LDN, in my opinion, is his best bet at stopping/slowing something down. One dose certainly isn't enough to know anything. One day last week I had a terrible day! Couldn't pull myself up to stand, leg stiffness was worse than usual. I didn't know what was happening. A few hours later, a fever broke, and I didn't even know that I had one! I was so concerned with not being able to take care of myself that the fever went unnoticed. After it broke, I began to get better. The next day back to normal (which isn't a picnic!) My point...does he have some kind of infection or bug going on?

As far as Avonex goes...violent reactions are probably the body screaming, "Don't do this to me!"

Marcie

In a message dated 11/3/2004 7:47:58 PM Central Standard Time, thomasine2@... writes:

Hi all, last night I gave my son his first dose of ldn

(1.5 mg). He is RR, and going down lately. Although

Avonex seemed to help in the beginning he is now

showing some of the bad effects -- depression,

flu-like symptoms, increasing dementia -- that I have

read about.

This morning he was quite a bit worse!! Legs weak,

arms shaking badly with uncontrolable

motions...exhausted with little sleep, depressed. Has

worn off some as the day went on.

Not a good start. It is hard to make a decision for

someone else, which is what I have to do, pretty much,

so decided not to try another dose but see if anyone

has any input first.

He has an appointment next week with Dr. Mihai (area

MS guru at University Hosp. Syracuse) for the first

time. I hope for some guru-like insights on his

condition, although possibly not on ldn. I also hope

for some input from this board if anyone has similar

experience, because this is pretty scary!

Thanks

ine

[Guest guest]

ine,

Hi. I live in the area and see Dr. Jubelt. I didn't like mihai. I asked

Dr. Jubelt to prescribe ldn and he refused stating that all the results are

anecdotal. I went thru a phone consult with dr scott and paid $175.00.

That was 3 weeks ago. I feel soo much better. have more energy etc. The

first few days were kind of strange though. They say you can go back thru

symptoms when on ldn at first. I also started at 1.5mg for the first week.

It must be hard to make decisions for your son. HOw old is he? My advice

is to stick to the ldn.

karen

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[Guest guest]

What is dr. scott's number?

Liz