Discussion in 'Fibromyalgia Main Forum' started by pixipip, Aug 20, 2003.
Is anyone outthere using amino acids to ease fms symptoms?
If so are you having any sucess?
My doctor uses a neurotransmitter program to treat FMS. I completed the testing,which showed deficiencies of serotonin and norepinephrine, and severe deficiecny of epinephrine. My dopamine was normal, and my GABA was above normal, probably because I have been taking GABA for more than ten yrs.
I have not started the primary treatment yet. I had serious stomach problems with 5-HTP, and tyrosine in large amts. raises blood pressure (mine is too high already), so my doctor started me on Whey, which has some tyrosine, and some tryptophan (the precursor of 5-HTP, to get me used to it slowly). I got an immediate energy boost from the Whey. It caused some gas the first couple of days, but now I am used to it.
How much tyrosine and 5-HTP are you taking? How long have you been on it? Getting results?
I've been taking them for about two weeks. After the first week I notice my sjogrens-type symptoms disappearing. I don't have the dry mouth and dry eyes as bad as I did. I'm also feeling better overall, though nothing I can put my finger on yet. In other words, I still have the symptoms, but they don't seem to be as bad. Maybe it's that I feel better emotionally. I'm thinking maybe my dose needs to be readjusted, though. I started out taking 12 capsules a day for four days, then 8 per day for four days, and now 4 per day. I saw the improvement the first week, but this week I'm slipping a little, so maybe I need to up the dose again. Of course, it could be I wore myself out this weekend and that's pulled me back down. So hard to tell what's what - so I'm withholding judgment until I've been on them a couple of months. One thing is for sure, after the first couple days I developed a serious case of bad breath that only went away a couple days ago, after I didn't take them over the weekend. I'm back on them now and the bad breath so far hasn't returned. I hope you'll post again when you see results and share with us.
Hi Klutzo, I am not taking amino's yet, I've just been studying real hard trying to find something that will help and amino's + other nutrition looks the best bet to me.
I have to be quite sure in my mind first though because living in England where proffessionals are still in the dark ages is a real bitch, it's almost impossible to get them to try anything exept pain killers and anti depressants,so if I try anything they percieve as alternative I pay for it all out of my own pocket and we're on a real low income. I've been taking Q10 for two years and find it really helps with the fatigue. I'm deffinately gonna give the amino's a go, but it's so hard to find anyone who knows what they are doing here, and if you can you usually can't aford there services. I might just have to do it by the trial and error method as I don't know what tests I should ask for to find out what I should take and the dosage, but it just makes more sense to me to replace what we are actually short of instead of just giving us drugs!
Thanks ever so much for replying it means so much to me, I only found this site yesterday and allready I'm getting the help and understanding I've been searching for all my life,
Love and light,
Thanks ever so much for replying, it's so amazing that I only found this site yesterday and already I've had two reply's. I'm real new to this internet stuff, I wasn't even sure if I'd posted my message properley. I'm so exited by all this, it's like someone just swiched all the lights on in my world. What combernation are you taking, and were you given them by a proffessional or are you self prescribing?
I don't know when I'm going to start taking amino's but if I can go to my doc and say look these other people are trying it,and being helped by their doc's I might just be able to convince him to let me have the tests and maybe prescribe them for me. most of the doc's over here are so reluctant to try anything that's not the norm, it truely is like getting blood from a stone, I've been waiting almost two yaers just to see a rheumy and still havent got to see one yet, the one who diognosed me just said "we don't know what causes it, we don't know how to treat it, you must aim for self sufficiancy". I found that to be of great comfort, LOL! I wish you great success with your treatment.
Love and Light,
The amino acids I'm taking only run about $30 a month, so it's not terribly expensive. I get them through a physician in my family who has made a lifelong study of nutrition (Dr. Merritt Horning out of Loma Linda University in California). You can find out how to get them by contacting PhysioLogics, 6565 Odell Place, Boulder, CO 80301-3330 USA. They include 18 different amino acids - including all the non-essential ones. If you want specifics on how many milligrams of each, let me know.
You should be able to find out some info about dosages by reading things he has posted on the Internet. Just put his name into a serach engine with quote marks before and after the name" (you probably already know that, but you said you were an Internet novice, so I wanted to make sure you didn't end up with a million other people named Marty, etc. which is what happens if you don't enclose the whole name in quote marks).
The dosages of tyrosine and 5-HTP can be quite high for this, but are worked up to slowly. Tyrosine esp. is often taken in very, very high doses, which is why I wish you could get someone with knowledge of this treatment to monitor your progress. Sometiems Lysine, arginine and ornithine are added as well.
We have many other members here from the UK and they complain about the same things you do. This illness is hard enough to deal with already!
I'm from the UK too.
Like you I'm really fed up with the so called national health service and hospital wise I live in a bad area so not much is available to me either. I did change GP, well see another within the same practice, and that has helped. She does not see ME/CFE and FM as specific illnesses but believes her role is to help patients if she can. Her hands are tied though by ntional and local policies so it's not all plain sailing for either of us.
In the UK having the right GP can make such a difference so if yours is not helpful see if there's a better one you can change to. Know it's hard at the moment but it's really worthwhile.
You may find the tests Klutzo is talking about are not avaialable on the NHS. Unfortunately Drs have been persuaded not to test those with ME/CFS because nothing shows up on standard tests.
I felt really angry when I finally learnt how to use a computer and surfed the net. It's bad enough that important info is not given to our doctors but I felt very let down by the patient organisations in the UK too. I used to help run Action for ME years back, in those days well presented info on any possible helpful treatment would have been made available once we had checked it out.
Right having had my vent onto more positive things. I was severely afffected and went into further decline 5 years ago. Stopped the downward spiral then found this site. Everyone here is great about explaining the important issues and recommendations. I'd then research it on the www and choose what I felt would help. I reacted to somne things but I'm now on a comprehensive very holistic and broad based treatment programme, most I decided for myself, a few things have been precribed for my GP. It's early days yet but over the last three months there have been signs of improvements in spite of a really bad reaction to the heat. I always felt things could be better than they were, I know now I was right.
So whilst the situation for treatments in the UK is appalling you can do something now. Amino acids are just one option. Take your time looking into all the possibilites then follow your gut feeling, usually it's right though a few board members did have to work hard at getting me to accept certain contributing factors.
Whilst I'm doing this I'm plugging away at challenging misconceptions and educating my GP.
What is the name of the testing for this? is it Neurotransmitter Testing? Do most wholistic doctors know about this, or do you need to bring in some information on this to them? I looked up Marty Hinz's website, but only found docs who have been trained by his seminars..and I used the quotation marks with his name..
Thanks for any help,
Just posted an extract from an article published in the UK, gives dietary and well as supplement advice.
After reading Klutzo's posts and doing some research I've just started on GABA and 5 HTP, low doses but I like the differences. In the UK we have no hope of being prescribed neurontin so I thought I'd try increasing my GABA instead.
Felt the difference with GABA, alongside the hydrocortone I'm coping a lot better, feel less like blood sugar is dropping and less affected by sensory overload, I'd got to the stage where it took almost nothing to set that off.
A high protein diet suits most of us and of course this provides up with more amino acids.
My test kit was given to me by my holistic doctor. It was a do-at-home urine test that I then mailed directly to the lab in the regular mail. The company that makes the kit is called NeuroScience in Osceola, Wisconsin. Their phone number is 715-755-3995. The test kit # for Neurotransmitters is #9012. Medicare will pay 80% of the cost of this test , but my doctor told me Medicare is the only insurance that pays for this testing, and it costs about $120. The Neurotransmitters tested for were: Epinephrine, Norepinephrine, Norepi/Epi Ratio, Dopamine, Serotonin, GABA, and Creatinine.
I don't think all holistic docs are familiar with this test, since it is very new. Sorry I don't know any more about it than that.
Separate names with a comma.