LymeNet Flash: Any updates on Neurotransmitter protocol (Dr. C)?

This is topic Any updates on Neurotransmitter protocol (Dr. C)? in forum Medical Questions at LymeNet Flash.

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Posted by pab (Member # 904) on :

This is one of the protocols we are thinking about for Jake.

Can anyone that has done this protocol give me an update?

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Posted by janet thomas (Member # 7122) on :

Can you please explain what the protocol is?

Posted by troutscout (Member # 3121) on :

I have seen others say it helped after the first month or so.

Trout

Posted by tickedntx (Member # 5660) on :

up

Posted by Lymetoo (Member # 743) on :

Dr C has already revised the protocol, adapting it to work better for Lyme patients. So the paperwork you have may be outdated.

I've heard pros and cons....either it works, or it doesn't....I'm not being glib. It's just that I know it doesn't work for everyone.

Posted by pab (Member # 904) on :

At our last appointment with Dr. C on August 3rd he said most Lyme patients need lower doses of the amino acids.

Jake has an appointment on September 27th and we will discuss it with Dr. C again.

Posted by hiker53 (Member # 6046) on :

I was on Dr. C's amino acid protocol for a month or so. It greatly increased the number of seizures I was having. We did a neurotransmitter test that week and found I had high levels of neurotransmitters and didn't need the amino acids.

I asked why he doesn't do I baseline test when we ffirst talked about it and he said then that everyone with lyme is low in neurotramsitters and needs the amino acids. Well, in my case it wasn't true. Perhaps you should ask for a baseline test so you have something to compare to later. Hiker

Posted by tickedntx (Member # 5660) on :

Flags should go up any time someone says, "Every Lyme patient has [fill in the blank]."

Posted by Lymetoo (Member # 743) on :

ticked....could be he said everyone he had tested thus far was low in neurotransmitters....just a thought.

pab...I got new paperwork from him on the 24th [I think] It's MUCH simpler than the original protocol....and cheaper, I think.

I'm not that interested in it now ... holding out for him to fine-tune it. The jury is still out, in my opinion.

Biting Back got good results......maybe you could contact her.

Posted by pab (Member # 904) on :

quote:
Originally posted by Lymetoo:
pab...I got new paperwork from him on the 24th [I think] It's MUCH simpler than the original protocol....and cheaper, I think.

I'm not that interested in it now ... holding out for him to fine-tune it. The jury is still out, in my opinion.

Biting Back got good results......maybe you could contact her.

Thanks Lymetoo!

I knew there was someone with good results and I couldn't remember who it was. I will call Dr. C for the updated info. We will be seeing him at the end of the month.

Posted by beach4so (Member # 3832) on :

Pab,

Hey, Just wanted to let you know that Dominic and I are both doing the Amino Acids. We were on them for 1 week before the storm hit and then we had to stop.

Dominic is doing great we have had nothing bad happen on them. It is alot simplier then the first paper work he gave us in July. Due to Dominic's age instead of 4 pills at a time he takes 1 and I take 2.

We have noticed that Dominic is not needing anything to help him sleep and is off everything except his vitamins and his Boluoke (Lumbrokinase) even that he is only taking 1 every 2 days.

The cost was ALOT cheeper then on the original paper. Together Dominic and I are not costing what the paper had for 1 person.

Due to evacuating for the storm everything was pack very quickly and we missed doses for 2 days, when speaking to Rose she susuggest we wait until we got settled again. It is important to not miss a dose when on this protocol.

We are starting back in the morning, now that we are home and getting back into routeins again.

Hope this helps, let me know if you have any questions.

Starr

Posted by beach4so (Member # 3832) on :

Sorry wanted to add that i spoke to our peditrican and he agreed that we did not need the baseline test. He said "most people in general" would probebly test low and due to the fact that Dominic has been on Abx for 2 years that it could only help him.

He pretty much backed up what Dr. C said, including that low amino acids affect sleep, immune system and even cause ADHD syptoms, bioplor and such. It was amazing what he was telling me about it and he was excited that Dr. C was going this route with Dominic.

Starr

Posted by 24bit-moderate (Member # 7841) on :

quote:
Originally posted by hiker53:
I was on Dr. C's amino acid protocol for a month or so. It greatly increased the number of seizures I was having. We did a neurotransmitter test that week and found I had high levels of neurotransmitters and didn't need the amino acids.

I asked why he doesn't do I baseline test when we ffirst talked about it and he said then that everyone with lyme is low in neurotramsitters and needs the amino acids. Well, in my case it wasn't true. Perhaps you should ask for a baseline test so you have something to compare to later. Hiker

I saw him back in April when he was starting it, and he told me that based on the results from the doc he was learning the protocol from and based on the results he had gotten from some Lyme patients he'd tested (don't quote me on that, something along those lines), he was confident that most Lyme patients would be low. I can't ever imagine that he would ever make all inclusive broad sweeping statements. He's an extremely smart guy and would never do that.

Just a side note, there are basic drugs such as pain killers like Ultram where they can cause an increase in seizures. Diet can even effect them.

Posted by pab (Member # 904) on :

Starr,

Thanks for the info!

Is your home OK? I'm sure you will be glad to be home.

How long will you be on the neurotransmitter protocol?

Posted by Lymetoo (Member # 743) on :

Good info, Starr and 24 bit....thanks!

Starr....I bet you are SOOOO happy to be home! We're all so glad you and your family are safe! [Smile]

Posted by hiker53 (Member # 6046) on :

Just for the record, I am not criticizing Dr. C. I did not find the amino acid therapy helpful. It might help others. I know Biting Back said it really helped her. However, I wasted a lot of money, because I didn't have a baseline test done. He said it wasn't necessary and I believed him. In my case he was wrong. I still believe he is an excellent doctor, just not God.

As soon as I stopped the amino acid therapy my seizures stopped, so they were definitely related. That is the only change I had made.

I certainly hope it works for others! Hiker

Posted by beach4so (Member # 3832) on :

Pab,

We are suspose to be on it for 3 to 5 weeks. We were just finishing our first week when we had to leave and our stomachs were not up to taking all the pills as scheduled.

Today is our first day starting back. We have to have a phone consult with Rose every week to see where we stand and if we are having any trouble with anything.

Hiker, I totally agree with you, Dominic tried ramphfin (sp) it was suspose to be the greatest and it like to kill him, just wasn't right for him but I know it has helped others on here.

Guess like Dr C says what works for one doesn't work for all so when you find something run with it. Dominic's greatest have been clynd. and quinie and then heparin and flagyl, but he still wasn't totally better.

The allergist Dr. C has us seeing in LA has been amazing and we have seen major improvements with the allergy treatment. Hoping for the same with Amino Acids.

Starr

Posted by Lymetoo (Member # 743) on :

Starr...you mentioned your stomach. Did you mean that literally? I know alot of patients have trouble with stomach pain while on this therapy. That's one reason I'm not anxious to try it.

Hiker....I think you should discuss the money issue on your next visit to see Doc.

Posted by beach4so (Member # 3832) on :

Sorry to confuse anyone, we have had no problems with our stomachs because of this treatment.

Our stomachs were very upset over the evuaction, sitting in traffic, every station out of gas on our way out of LA/MS it was extremely scarry leaving. Then due to the not knowing about our house and friends that stayed behind had our nerves rattled more. Afterwards watching good ol CNN and MSN can turn anyones stomach.

Dominic started back yesterday and I am starting tomorrow, We honestly had no sypmtoms but good ones on this, grant it we were only on it for a week. One thing is lots of probotics, they stressed this big time.

Starr

Posted by borealis (Member # 7866) on :

(first post, eek)

what is this protocol?

pre lyme, b/c of my cfs dx, my doctor tested me for aminos and i'm low on Arginine, Isoleucine, Leucine, Lysine, Methionine, Phenylalanine, Taurine, Tryptophan, Threonine and Valine. all below the 20th percentile, many below the 5th percentile.

i'm now on a custom amino blend designed to supplement those things i am low on.

is this a lyme thing? is this simmilar to Dr. C's neurotransmitter protocol?

are all lyme patients as psycho low on aminos as i am?

Posted by Lymetoo (Member # 743) on :

Welcome, Borealis!! [Smile]

I would say the aminos you are taking could provide a similar result as Dr C's protocol. You might google "amino acid therapy"....maybe you'd find something about it there.

Here is dr C's website too:

http://www.drcharlescrist.com

Are you feeling any better on the amino acids you're taking?

Posted by borealis (Member # 7866) on :

lymetutu,

thanks for the response. i guess what i'm doing is pretty much the protocol as i'm replacing what i'm missing (?) i googled it and wow it's used for a million things. i have to say it's a very sane idea... test your aminos and fix problems. one of those "why don't they do this to everyone?" things. if it works for cfs and all those things, i'm sure it helps for lyme. and lyme would probably explain why i'm so deficient my levels look like those of someone who's starving, i guess.

i couldn't figure out how dr. c chooses what aminos to use... but it's interesting to read that it's a treatment that is used.

my supplement is based upon my blood work, and the company that does the testing makes your amino blend (these guys, in case you wanted to know http://www.metabolicmaintenance.com/ who seem to make lotsa stuff)

3 others in my family had the same blood work done when i did, and only 1 other of us tested low, but our blends are different. i only mention that 4 of us had the blood testing done b/c only 2 of us showed that we needed it... if we'd all needed the custom blend i'd be sceptical of the testing, you know?

am i feeling better on it though... that's a hard question. i went on abx for the first just days before my custom blend arrived, so i've got all this herx uber pain going on.

but, i do have more energy than i've had in ... god, ever? i can stay awake during the day w/o provigil, etc.

now if only i wasn't weak and in pain [Razz]

so... i'd say thumbs up to aminos, even if i feel like dirt *laughs at self*

(the amino powder, as a side note tastes like vomit. i'm getting capsules next time *gag*)

(sorry for rambling on here)

Posted by Lymetoo (Member # 743) on :

Thanks for the info, borealis! Keep us posted on how you're doing!

Posted by Virginia of Yore (Member # 3269) on :

Hiker53, I was just reading that one rare but serious adverse side effect of some neurotransmitter drugs (like Zoloft & Paxil antidepressants) can be seizures. Perhaps it is related to a person's particular amino acid levels or their genetic makeup.