Does Anyone Take An Amino Acid Supplement?

[looneymom]

My son takes this supplement because of symptoms that appeared about 3 months after he was diagnoised. After he was diagnoised with Pots, MAYO suggested that he take salt pills. He did this and gradually was able to start walking and BP started stablizing. My son was also taking Gabapentin to help with nerve pain. The gaba was being gradually increased every week by a pain management doctor. However, when my son was almost at the highest does, my husband and I began to see changes in his ability to be able to bike, walk, stand and sit up. All the gains that our son had made, seem to disappear within a couple of weeks. We took him to our GP and he concluded that it must have been the meds. Our GP thought that maybe when the meds. got out of his system that his body would stablize and he would start coming up again. But that did not happen, he continued to get worse and started shaking and rolling constantly. Our cardiologist order blood work to check for serotonin and dopamine levels. Serotonin level was 14( starting range for test was 85) and dopamine level could not be determine. I started do some research on the internet to see how these levels could be raised up. I found several articles on amino acids and asked our cardiologist if it would be safe to put him on an amino acid supplement. Our cardiologist said to go ahead and see if it would help. He also tells me that he will get us in to see a new neurologist to deal with this problem. Three weeks later, our son sits up again and stops rolling.

The next week we see the new neurologist and I tell her what happened. She tells me to take him off the amino supplement, so she can do a spinal tap to check for other amino defiencies. The spinal tap is set up for next week. So I take my son off the amino supplement and 48 hours later, his body is like jello again. He cannot set up and he starts shaking and rolling again. We get through the spinal tap and I put him back on his amino supplement. Twelve days later, he sits up again but also stands up for short periods of time. Our neurologist has told us not to take him this supplement. Our son has always been able to sit up since he takes the amino acid supplement. Has anyone else had this type problem?

[RichGotsPots]

wow a spinal tap for pots, that's a new one for me :-o

[hippychic258]

Sounds like he is having a tough time, I am so sorry I know how hard it is for me to handle I couldn't imagine if one of my kids had to go through it. I would say if the amino acid supplement works stay with it Doctors don't have all the answers and if it works that is awesome.

What do you mean by rollling?

Hugs to him!

[Christy_D]

That was actually discussed by my son's neurologist, thinking a possible spinal fluid leak would be the cause of the symptoms. They did a MRI myelogram instead and didn't see anything unusual, thank goodness. I wasn't really wanting him to have to endure the spinal tap.

[issie]

Yeah, some neuro's do spinal taps to check for autoimmune issues.

There are some that are connected to problems with proteins. Amino acids are proteins. So, maybe his body needs more and isn't getting what he needs from his food.

Which amino is he on?

Issie

[looneymom]

He takes the GNC Amino 1000 supplement. Our neurologist found out from the spinal tap that he had defiencies in the precursers to amino acids and sent us on to a genetic doctor.

[bellgirl]

Sorry that your poor son had to endure this horrible pain....thanks for your insight. I'm going to do more research myself, as I have been suffering with nerve pain lately; they are thinking I have fibromyalgia, and I've been referred to a rheumatologist. I think I'll try the amino supplements first. I have been drinking whey protein in shakes.

[badhbt]

Wondering if amino acids are still helping?

[RichGotsPots]

I've been reading up on CIDP which is a serious polyneuropathy and they do test that with spinal fluids..

[RichGotsPots]

glutathione is one of the bodies most powerful healers our bodies has, bar none. And it has been clinically shown that Whey protein can help build it up in the system. It's an big antioxident too and can not be absorbed but taking glutathione supplements.

[looneymom]

The only thing the shake has really helped with has been the fatigue and energy issues. My son had his serotinon and dopamine levels checked the end of March and they were unreportable. So now our cardiologist is uping his Zoloft to see if it will keep the serotinon in his body.. He suspects it might have stopped working for him. My son also had a sleep study done late March. Hopefulyl this will answer some other questions.