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Any CFS neurologist in California?

C

caremom

Messages
41
Location
Australia
My son has been constantly experiencing brain firing or mental bombardment for the past few months. He feels like the neurons misfiring within the brain, in addition to having mild tremors. He has to get up and move or jump just to rid the symptoms. Obviously, he gets extremely exhausted after a few jumps.

On doctor's advice, he tried increasing Rivotril (Klonopin) and Lamictal (an anti epileptic), all to no avail. Doctor turned down repeated request for a referral to a neurologist, saying the latter would not know how to treat a patient with CFS. :headache:

Besides Dr Benjamin Natelson in NY, has anyone seen a neurologist in California, which is the state closest to Australia? Thanks
 
V

Valentijn

Senior Member
Messages
15,786
I don't know of any neurologists that are also CFS specialists in California. But you could try getting his neurotransmitter levels tested, which can be done with a urine amino acid test and a catecholamine test.

It looks like his current doctor suspects glutamate is the problem, since one drug (lamictal) inhibits glutamate, and the other drug (klonopin) increases the effectiveness of GABA, which opposes glutamate.

An alternative to those drugs is N-acetylcysteine, a supplement, which can lower glutamate by combining with it to form a very useful substance, glutathione.

But more importantly ... it sounds like your current doctor (GP?) doesn't know how to treat a patient with ME/CFS either. If possible, find a new one! Naturopathic/allopathic MDs can be especially useful with a complex chronic disease. They're probably a lot more willing to run tests too.

If all else fails, flying to New York from CA is "only" an additional 6 hours.
 
C

caremom

Messages
41
Location
Australia
Thanks, Valentijn. My son has moderately high blood mercury level. I read somewhere on this forum that NAC 'mobilise mercury destructively.' Wonder if this really is the case.
 
C

caremom

Messages
41
Location
Australia
Thanks for the link, Adster. I have not read it prior, but will do so during the weekend.

My son's mercury level was 67nmol/l. Normal range is between 0-50. We live in a developed country, but I am ashamed to say that the doctor thought treatment is unnecessary unless the level reaches 100nmol/l. I am beginning to wonder if his neurological issues have anything to do with the raised mercury reading.

We went to another GP who kindly consented to write a referral to a neurologist in a public hospital. The appointment is in July, unfortunately.
 
Andrew

Andrew

Senior Member
Messages
2,522
Location
Los Angeles, USA
Just off the top of my head, I don't think any of the world class CFS experts have a background in neurology. Does anyone know otherwise? I guess one could search pubmed for these issues, and see which names pop up.
 
A

Adster

Senior Member
Messages
600
Location
Australia
You might consider doing a trial round of DMSA chelation on the Culter protocol to see if there is any change in his symptoms. I think the effect of mercury at a given level will vary from person to person according to their body's ability to "deal" with it. Anyway, just a thought and I'm not a doctor or an expert by any means. I can point you to more info and sources of DMSA if you choose to investigate further. Good luck!
 
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