Two weeks ago I started 400mg of SAM-e and 1500mg of acetyl-l carnitine.
There has been no relief in the brain fog, but instead a general worsening of Lyme symptoms: shooting pains in legs, arms and back, increased achiness, sound sensitivity and irritability, and a general lack of appetite (gut pain and nausea). Don't think it is a Lyme herx.
Is this just coincidence? or have others experienced anything similar? I am debating whether to quit or keep at it for another week or so.
FWIW, I have only been on oral Abx for several months...still a long way to go, I know.
Posted by aklnwlf (Member # 5960) on :
Hi,
I didn't do Sam-e but I did Acetyl-L-Carnitine.
Gave me more energy. There's been quite a few things I've been on that have given me quite a herx.
I don't know who recommended those to you but I'd talk with them about it.
Also I read up a bit on Acetyl-L-Carnitine and realized I needed it.
Hope this helped out a little! Posted by Carol B (Member # 9110) on :
I have been taking both of them for several months now-prescribed for brain fog by LLMD. Do not feel as though I have had any negative effects from them.Actually I feel as if they have helped.
I am also taking Keppra , an anticonvulsant, which has also helped with brain function.
What else is in mix of medicines? Anything else newly prescribed ? I was told to take my Same and Acetyl -L on an empty stomach-which I do about 2pm in the afternoon.
Hope things have improved for you somewhat, Carol
Also things take time-it's a gradual process the clearing of the fog. I was told it could take several months to feel better.
Posted by tanzi2u (Member # 9237) on :
I got the idea for taking these supplements from Dr. B's 2005 treatment guidelines. My regular doc didn't see a problem with them. Don't see the LLMD until late this month.
The other meds I am on are biaxin, plaquenil and florinef.
Posted by kgg (Member # 5867) on :
First off, I try to start supplements two weeks apart. That way if I have a bad reaction I know which one is the culprit.
SAMe can be nauseating. I believe it can be found enteric coated which may help. Plus it is a sulfur compound. Some people have a problem with sulfur. Their body does not metabolize it efficiently so it builds up causing one to feel poorly.
The l-carnitine I took a long time ago prior to my lyme diagnosis. The only thing I remember about it is that it upset my stomach too.
They both can be helpful for lyme symptoms. If I were you, I would stop both of them until I felt like I was back to base line. Then start them again, one at a time and see how you react.
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