Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Be VERY careful with GABA. Start with tiny, tiny doses. You would never want to try to get to maximum dose as, it seems, those with lyme react very differently. As well, one lyme patient may do fine with another have severe reactions.
For me, even small doses cause seizures. Oh, it's meant to be calming - in theory - but it sure does not translate that way to my brain. I tired many times over the years to take this to control seizures but it always made it MUCH worse, lowering the startle-seizure threshold to new lows so that even the very slightest sensory sound or flicker would slam me to the floor.
It also made me much more dizzy and weakened my muscles so that I could barely hold myself up. I got all of these reactions - just the same from Neurontin when I tired that (also many times, over time). But others here do very well with that, too.
So, just be careful, start with extremely tiny dose. And, if there is something else that can achieve the desired results, I'd go with that. I found many other things that work better for me. Not sure why you are wanting to take it, though.
My ND attended a workshop last year and said that there was some discussion about GABA and other NDs had seen the same reactions in their patients as I had with it. She said she didn't have her notes - or didn't get that packet as she had only sort of walked by and caught some of the conversation.
I never got the followup on that but she did say that it seemed to be for those who had trouble with certain liver processing systems. I do have problems with the C-P450 detox pathway, so that may be the glitch. But, many with lyme also have P450 pathway stress. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler, Do you think this is why I had such a severe withdrawal from klonopin when I was only on it for a month at a very low dose... having lyme and the liver detox pathway?? Very interesting.
Doctors did not believe me when I had such an adverse reaction. I have been wondering for an entire year if I have benzo withdrawal syndrome still or if it's lyme. Benzo w/d causes a lot of lyme-like symptoms, so it really confuses the diagnosis. I was fortunate to have a positive blood test, but still wonder what is from klonopin and what is lyme.
In my opinion, benzos and lyme do not mix unless you have very severe symptoms that need to be addressed (like muscle movements, seizures). Just from my experience with this drug.
Anyhow, I was told to take Gaba too, but I will avoid it...and neurontin, but will avoid that one as it works on the same receptors.
Thanks for the heads up!
Posts: 618 | From NC | Registered: Oct 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- jwall,
Some do fine with all this. It's always been perplexing to me when drugs that are supposed to help have the opposite effect.
I'm speaking only for myself, having tried several benzos over the years, and Neurontin (not a benzo) and they all caused 4 things. GABA has also caused the exact same domino effect in each of these four categories:
1) increased number of seizures (not fewer) and much more severe at even lower levels of a trigger from sounds, light or motion -- and always feeling on the verge of a seizure; 2) intense muscle weakness/falling from that; 3) increased dizziness/vertigo/nausea; and 4) deep depression, from out of nowhere.
Regarding the severe depression, benzos are central nervous system DEPRESSANTS. It's what they do. Even melatonin has me ready to give it all up by day three. It's uncanny.
Although neurontin is not in the benzo class (it is a GABA analogue), it is a central nervous system depressant to me and very sedating.
Even at very tiny doses. I tried several different times with different anti-seizure drugs (benzos and others), over time. Once I was dx with 2 kinds of genetic porphyria, it made a lot of sense.
But my liver specialist retired soon after the dx and before I got the 3 tick-borne infection dx. So, I've been on my own to figure out a lot of this. Most MDs don't know much about porphyria. My specialist had been the only one in town to consider a chronic kind of porphyria with on-going symptoms.
The TBD dx also makes sense as that adds to toxicity.
Klonopin seems to work fine for some people - but it was just one that totally clobbered me.
And, still puzzling, Neurontin does not use the C P-450 pathway. But, it is sedating - and it is ototoxic and vestibular toxic, so that can explain a lot.
With an inner ear dysfunction being a trigger for seizures, adding an ototoxic drug really was like loading the starting gun for startle-triggered seizures.
Many with lyme have stressed Cytochrome P-450 liver detox pathways and that can raise porphyrins, causing toxic reactions.
Benzodiazepines are to be avoided by those with any C P-450 problems - and by those with any inner/middle ear dysfunction (and right there, that includes a lot of lyme patients).
For me, rather than trying to increase the GABA directly, it works so much better to damp down the NMDA - with MAGNESIUM. That, then brings back in to balance the excitatory NMDA neurotransmitters with the calming GABA calming brain receptors.
MAGNESIUM, by far, has been the best but I also find ADRENAL SUPPORT and other supplements to help a lot.
Here's what I think happens with some of us are given calming agents: the brain tries even harder to wake up and then shoots through like lightning.
(I think) the book, ""Symphony in the Brain" by Jim Robbins speaks to that effect. When I read that, it was like he was writing about my brain. Someone writing about QEEG brain mapping addressed that. I loaned out my Robbins' book and forgot to whom. No one I currently know seems to have it, so I can't say for sure where I read it.
And, I actually had 3 different QEEG brain maps - they all prove that my brain waves are far too slow (very common with toxic brain infections and swelling) --- so adding a drug that slows down my brain is NOT the answer. But neither is adding one to stimulate it, due to the toxicity levels that have the brain too irritated and the adrenal function depleted. My body can't handle anymore "excitement".
So, magnesium is such a grand helper for so many reasons. Paul Cheney, MD discussed this in his work in the CFIDS Chronicle in the '90's. But, he also urged the use of Klonopin. Now, I see that he is focusing more on toxicity and the C P-450 liver detox pathway. I've not been able to locate his latest writings on that but I suspect that he may be revising advice to use drugs that stress that pathway.
Bottom line: When infections (including those from parasites) are managed/treated and toxicity is controlled, good things can happen.
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