Interesting Neurotransmitter Info!

Discussion in 'Fibromyalgia Main Forum' started by klutzo, Aug 4, 2003.

  1. klutzo

    klutzo New Member

    I found a great website with info on the effect of low levels of Neurotransmitters on Fibro and other ilnesses, as well as interesting stuff about why our Glucose tolerance tests usually show we do not have hypoglycemia, though we may have all the symptoms....there is a name for is a neurotransmiter deficiency called "complex appetite".
    This site explains some about the work of Dr .Hinz in proving that mid-morning urine testing is an accurate reflection of neurotransmitter levels. (Madwolf, take note)
    It is the web site of Jeremy Kaslow, M.D. I found it by searching for "neurotransmitter testing", but you can probably get it with his name.
    Once at the site, click on "Health Topics" and select from the list the one called "Neurotransmitter Repletion". This is long but very worthwhile to read.
    I hope anyone taking SSRI's will read this, as it is far scarier than Dr. Cheney's warnings about these drugs!

    EZBRUZR New Member

    Ever since I was 12 year old,various DRs have mentioned problems of such with in.My mom wasn't too good on follow-up,or she didn't like DR Dx 4 me.either way i've been put on and off SSRI's 4 way too long.The more I became aware of how I can educate myself the better the result I seek will be.I REALLY DO NOT like Meds,I'm gonna go engulf myself in that website,took peak b4 thanking you . Thanks for Sharing,peace,eZ
  3. klutzo

    klutzo New Member

    Like to know what you think of this article if you have time to read it.
  4. klutzo

    klutzo New Member

    Hoping people taking SSRI's will read this.K
  5. Sunshyne1027

    Sunshyne1027 New Member

    For three years I have been on Celexa, a few months now on Paxil CR. Reading the article.. I learned alot. I also read other articles too. Found alot of great info, and I want to thank you so much for sharing it with me. I also found a site on Dr. Hinz. Found it so interesting and learned alot there too.

    I stopped taking the Paxil a few weeks ago. I took it under the impression really that it would help with the depression, and the FM symptoms. I got the depression under control while in therapy. I feel I no longer need the medication. I been ridding of medications lately that do not work, and I feel taking too many meds can be really harmful in the long run. Been implementing diet and lifestyle changes instead.

    So far.. So good with not taking the Paxil or Celexa. Actually.. I see no differnce while on them, vs. not taking them. So I feel they weren't really working after all, that therapy, working out depression probs helped some. I also have a script for Xanax. I take it on occasion. When having anxiety, nerves are shot.

    I liked learning that depletion of neurotransmitters may be the root cause of depression.

    Thanks again for sharing the site!
  6. kredca4

    kredca4 New Member

    I bookmarked it for furture reading, it look's very interesing. I have always been offered SSRI's, but I refuse them, because I tried them in the past and they didn't help at all.
    I always feel like they give them out, when they, the Dr's themselves can't find an answer.

    Thanks for sharing the Information, that's how we Learn and Grow in our dealing with these Syndromes.

  7. little

    little Member

    Klutzo, I can't find the web site. Could you give me a little more information. I would appreicate it. Thank you. Gail
  8. tansy

    tansy New Member

    site but it's going to take time (as always) to start getting my head around it all. My hypoglycaemia cannot be controlled by diet, it's triggered by becoming dehydrated, heat, sensory overload, +++. Your info on POTS helped make sense of some of it and this new info even more so.

    Came to mind that this sounds like an alternative but similar method to that developed recently by Dr Jay Goldstein. Am I right?


  9. little

    little Member

    I saw your other post on your test results.I looked on dr hinz web site and there it was. It is very interesting. thanks for the info. Gail
  10. klutzo

    klutzo New Member

    If I remember correctly, Dr. Goldstein uses a lot of drugs, some of them pretty scary, like ketamine.
    This protcol uses no drugs at all. It primarily consists of large doses of L-tyrosine and 5-HTP, started slowly, and titrated upwards as tolerated until results are achieved. Do a websearch for "NeuroReplete" which is one of the products used in the protocol and you can see the ingredients.
    I cannot tolerate 5-HTP, but can tolerate plain L-tryptophan, which is now off the market, but I think docs can still get it by prescription.
    If I read this correctly, fixing your neurotransmitters would also fix your so-called hypoglycemia.
    I have decided to ask for another 8 am fasting cortisol to be absolutely sure that is not my problem, since Madwolf is so convinced. He offered to run one yesterday, but I turned it down, figuring it would not be any different than the last one.
    However, something is very wrong with me ever since I had that large cortisone shot in the ER over the weekend. I feel like I'm in a steroid rage or something, am shaking, nauseated, have sticky white goop in my mouth, and have only slept 9 hrs. in the past 3 days.
    The trouble here is getting the *%#@ lab to run the cortisol test at 8 am. like it is supposed to be run. They refused to let me go ahead of other people who were waiting the last time I had a timed test ordered, and the results were worthless. HMO's have ruined medicine.

    [This Message was Edited on 08/05/2003]
  11. tansy

    tansy New Member

    Dr Goldstein's protocol included some scary drugs. My brain's in enough of a mess so would not have liked his approach anyway.

    Do feel brain is triggering a panic status or similar signals when I get hot, even eating hot food can do it. Other triggers too. Got so confused that my low glycaemic diet didn't work cos according to all the theories it should have been ok. Do you think our POTS (son and neice have similar problems) make us more prone to this. Like you I know the drop in my hormones has made matters worse.

    As I've written before I think we need to get to the top of any malfunctioning system and treat that first, topping up lower down can cause further imbalances.

    I have seen L-tyrosine and 5HTP recommened before, so these AAs have been used by others too. Neuroreplete appears to add lysine and other cofactors so do you think this would work better than tyrosine am and 5htp pm.

    Boy this is all very complicated, so much makes sense but it's finding the protocols that suit each one of us that challenges our brain cells and our pockets.

    Sorry to hear you're still having such a difficult time since the cortisone, sounds like they either gave you a massive dose or for some reason you cannot get over it's effects.

    Do hope it all passes soon.


  12. klutzo

    klutzo New Member

    Actually, I think it may be the other way around! I think the hypoglycemia or "complex appetite" neurotransmitter problem, or whatever you want to call it, may be causing us to have more POTS attacks. I also think POTS may be neurotransmitter related, since I have had a drastic reduction in POTS attacks since I started taking Catapres aka Clonidine HCL for my high blood pressure. Catapres is an alpha-blocker, meaning it blocks the sympathetic nervous system, which is the bad guy in most POTS/panic problems. I have had only two attacks in the past 2 yrs., both of them caused by leaving an overly heated building and stepping out into 40 degree weather.
    Where this gets confusing, is that my test results showed horribly low levels of all the sympathetic transmitters except dopamine. While my serotonin was horribly low, my other parasympathetic transmitter, GABA, was above normal (probably because I take maximum doses of GABA daily)
    This all seems "bass ackwards" to me! (Don't know if you have that expression over in the UK or not!).
    I can't take NeuroReplete since it has 5-HTP in it, but I can't see any reason not to try it out, if you can get it over there.
  13. beckster

    beckster New Member

    I get time to read the stuff soon!

  14. tansy

    tansy New Member

    Quite a few of us in my family have POTS or similar, low blood pressure etc. The others are still as I used to be, I'm the only one in whom it has got to really silly levels; possibly one of most disabling factors of my DD just now.

    It would be cheaper and easier to get hold of these as individual amino acids in the UK though haven't priced them yet. The neuroreplete is expensive if one ends up having to take the max dose for long. Have not sourced it in the UK yet.

    We need our bodies to be in a position to do what's necessary and heal. Mine at the moment does not feel like it's up to much even though I've already made some modest but welcome improvements (candida back under control etc). I know I've got to support it's weakest and most central points so that the rest can sort itself out given time and help.

    Your recent test results, consultations, and research, have certainly come up with some surprises and food for thought. Thanks for sharing them with us, we all learn from posts like this.

    Hope you finally get some real sleep tonight.



    [This Message was Edited on 08/05/2003]
    [This Message was Edited on 08/05/2003]
    [This Message was Edited on 08/05/2003]
  15. JenniferAnn539

    JenniferAnn539 New Member

    I am currently using a neurotransmitter protocol and would be interested to hear if anyone else is using it and having any success.
    I have CFIDS and had minor improvment with many set backs, but will continue for a few more months while looking at other options. The basis for the treatment seems sound and the panal that I had done showed very low numbers across the board.
    Klutzo, thanks for the post, I am interested to see if anyone else responds who is using this protocol.
  16. IntuneJune

    IntuneJune New Member

    I have to turn the computer off right now and leave HOWEVER did not want to "lose this post." Will read later but one quick question, I thought we had THREE TIMES the amount of Substance P - a neurotransmitter in our cerebral spinal fluid resulting brain picking up more pain signals??

    Fondly, June
    (Thanks for your tireless work)
  17. sujay

    sujay New Member

    Didn't want you to think I was ignoring you. Will give you an opinion after I've had a chance to review the material. Thanks for the suggestion.

  18. klutzo

    klutzo New Member

    Jennifer - what are you taking on your neurotransmitter protocol? I'd love to know exactly what you take and how much, and how long you've been on it, and what your results are. (Nosy, aren't I?)

    Kerry - glad to see you back. If it's not your phone it's your car...I sure hope things calm down now. :)

    June - substance P was not tested for on this panel, as this was urine testing. The test was for levels of epinephrine, norepinephrine, dopamine, GABA, and serotonin.

    Sujay - thanks! I'm looking forward to your opinions.

    I am skeptical about this because I once spent months on an amino acid supplement designed just for Fibro, called Ligatend. It did nothing but lighten my wallet. I also spent $$$ on growth hormone secretagogues full of the aminos arginine and ornathine, with no results.
    Everything I've read about neurotransmitter deficiency suggests that the main cause is a lousy diet. I eat a healthier diet by far than at least 95% of the people I know. I take tons of supplements besides. In fact, I get teased about being a "health food nut". I have had both conventional and alternative tests to see if I am absorbing my food, and passed them, except for the alt. test showing I had a slight problem digesting fat. At any rate, I take digestive enzymes with every meal to help me absorb the nutrition. So, I am the last person to be accused of a lousy diet.
    I have no proof of this, but I think low levels of certain neurotransmitters can be genetic. When I look back at what my mother's life was like, I see myself repeating her life patterns and responses. It scares the he** out of me, since she died at age 60 and I am 52.
  19. gold2k

    gold2k New Member

    what's the URL?
  20. klutzo

    klutzo New Member

    We are glad you are here. Please read the Message Board rules at the top of the page. We are not allowed to give out URL's or we are banned from this Board.
    I have provided plenty of clues and you can do a websearch to find it.