donnali said...
Hi all! I JUST signed up here tonight while searching some info on Hansa Center and a few other such places. I stumbled across this thread and find the convo on Adderral very interesting.

My son is the one with Lyme. He is 30 and his main symptoms these days are neurological, including seizures, tremors, NARCOLEPSY and passing out/blanking out. The Narcolepsy is terrible. First they tried Nuvagil, it didn't settle with him well at all. Then they tried Modafinil which worked great at first then the effect wore off. Then they added Dexedrine... both IR and ER. I think he take 30 and 30 of those. And he takes 600 mg of caffeine daily, and a vitamin mix called Super Macho (eye roll...) but it has Taurine which I think is helpful. Now he is considering asking doc to change Dexedrine to Desoxyn but he is worried a bit about that. He formerly abused drugs so he knows it's a slippery slope with some of these things but at this point he is not getting any "high" from it, he is barely able to stay alert. It's so weird how everything just stops having effect.

He says Desoxyn is a drug used for Narcolepsy, interesting to hear it's not often prescribed. He also did tell me its the pharmaceutical version of "meth". Of course, one would hope the basic ingredients are a bit purer, etc. I think as stated above, not only is it different when you are using a drug for medical reasons on prescribed doses than when you are using it recreationally at large doses and employing methods of taking it to enhance the high, but also the way they make meth with so many toxic ingredients - I am sure some of which are not totally leached out of the finished product - so the users are basically ingesting toxic chemicals along with the drug. Which I am sure makes things all the worse.

Anyway, this long ramble was to say that the first few days Modafinil he felt it was a miracle! He felt alert and focused but no "speed" like effects, in contrast, the first few days of Dexedrine he did feel speeded up. That included being more focused and less pain. I think it's because, like anything that stimulates you, including laughter and exciting sports, etc - during times of stimulation you don't feel your normal pains as much. They are there but your mind is just more wrapped up in the stimulation feelings than the painful feelings. That is my un-scientific explanation for it!

I am also very interested in the comment about Mucuna, I hadn't heard of that one. It probably isn't going to be strong enough to make much of a dent in his narcolepsy but it would be worth giving it a try in his collection of supplements.

Oh, just for one more piece of info - he takes Gabapentin for nerve pain and seizures and Baclofen for muscle pain but since both have a sedating effect he takes those in the evenings only to try to avoid adding to his sleep issues.

If any of you who have commented on this thread who seem really knowledgeable about pharmaceuticals have ANY ideas what other things he might try I would love to hear them! He keeps falling asleep standing up and falls over and getting hurt pretty badly.

AforLyme said...
Adderall is a God send. It helps greatly, especially over the years as my symptoms have gotten worse. Prior to getting it from the doctors I used bronkaid over the counter. Now with my symptoms worse I cannot work but take adderall when I need to get something done. Lyme diagnosed after 19 years. Have had it for almost 34 years.