HAYLEYCOLE/LAMOTTA & ALL: I'd like your opinions, please

Discussion in 'Fibromyalgia Main Forum' started by Marta608, Dec 3, 2006.

  1. Marta608

    Marta608 Member

    First of all, let me say that the neurotransmitter dysfunction theory which we've discussed and agreed upon still seems valid to me. Then Cheney, Myhill et al presented the mitochondrial deficiency theory and that seems like it's another important layer of the onion. It would answer why, even when I took an SRI, I was still incredibly fatigued.

    A month ago I began taking a low dose of 5-HTP daily and noticed a marked change for the better in mood and fog. But while I had a bit less fatigue, it was still considerable and debiliting. My PA suggested that I try the 5-HTP every other day instead of trying to divide the dose but that did NOT work well. I'm still not taking any as I'm having my serotonin level checked in a few days so I don't want to impact the result. That means I'm crawling through the days until I can take it again.

    Hayleycole, I know you have predominate FM, not CFS as I do but what's your take on it the two theories together? Lamotta, I think I remember that you have CFS as I do. Doesn't the mito. theory feel right to you as well as the neurotransmitter dysfunction theory?

    If you agree that they both may be present, which do you think came first, the mito deficiency or the neurotrans. problem? Is there any way to tell??

    I'm very interested to know what you think about this.

    Thanks for your time and your energy,

    Marta
    [This Message was Edited on 12/05/2006]
  2. Marta608

    Marta608 Member

    Can't disagree with you there. Furthermore, I think that just DOING something we feel might help us helps us stress-wise. That's good and bad because we can be fooled into believing that what we're taking or doing is the cause of improvement rather than our proaction.

    So, when I have those times that I feel like the next step is to die and I lie down or sleep for even a short time, you think the improvement is due to "letting the pressure off" the part of the brain that controls our stress reactions?

    Again, thanks.

    Marta

  3. shar6710

    shar6710 New Member

    Interesting discussion you two are having.

    Do you think it's possible that HPA/neurotransmitter dysfunction and mitochondrial deficiency are two of the subsets of CFS? Rather than each being "another layer of the onion" that they are in fact two differnet manifestations of the condition?

    I believe that my symptoms point to the HPA type since I have improved dramatically on Mirapex. It seems reasonable that those people who follow the mitochondrial cocktail and improve have a different manifistation of CFS than I.

    To me the interesting question that remains to be answered is: do both ( and indeed all subsets ) actually have the same precipitating factor that simply causes a different cascade of symptoms or is the factor itself actually different in some way.

    Do you agree that CFS will probably turn out to be just an umbrella term for many different conditions just as, say, muscular dystrophy?

    And I agree with you both that doing anything is better than doing nothing. The simple act of deciding to fight back is theraputic in and of itself.

    Sorry for butting in...

    Shar
  4. Marta608

    Marta608 Member

    Shar, don't feel as if you're butting in. I couldn't think of wording to encompass all of these questions for everyone or I would have made it a general post. I changed it a bit; maybe that will encourage others to read and reply.

    Lamotta, you said that lying down for a period of time is helpful to you as it is for me. Wouldn't this also be helpful for a mitrochondria deficiency problem?

    Shar, subsets of CFS seem likely to me, depending on our individual genetic makeup and metabolism. I'm not so sure about mito/HPA axis deficiencies and/or dysfunctions being subsets of CFS, although, again, perhaps our individual makeup dictates that too. I definitely think that CFS is an umbrella dx. Good way to put it.

    Georgiac, I wish there was more info about long-term use of 5-HTP. My PA was very careful to remind me that it's not FDA approved or tested and that she can't predict the effects of using it long-term. That said though, she encouraged me to use it with care and she gave me a quick lesson on Serotonin Syndrome. I find this a bit unnerving. How long has your friend been taking it and has she noticed any need to increase or decrease her dose?

    I wish some of the researchers would begin at the other end; that is, find out what helps people with CFS, then figure out why.

    Marta


    [This Message was Edited on 12/05/2006]
  5. Catseye

    Catseye Member

    I came across the mitochondria thing months ago and dismissed it. I wish I hadn't then, I could have saved myself lots of agony. The supplements for feeding the mitochondria worked in just 2 days for me. Those are the supplements I really like, one with immediate results. Myhill says not to take amino acids, though, and I can't live without them.

    For neurotransmitters, I take TMG, Sam e and sometimes phosphatidyl serine. For neuros, phosph serine is supposed to be taken 100mg 3x day.( but if you are having adrenal fatigue, be careful because long term use can lower cortisol levels) These are precursors for the neuros. Also good are melatonin and the 5htp, although I don't need them right now. And you have to have B12 in the brain, so get shots.

    I would think the mito problem came first. I was so low on energy sometimes it felt like my heart was barely beating and I would stop breathing any second. We had only energy for basic survival and other systems were ignored and then they suffered damage, mostly from waste buildup. How could we tell? I think when I first got sick, it happened overnight, I couldn't get up but I could read okay. After awhile, I couldn't read without causing myself great distress, probably because neurotransmitters weren't there and the waste was building up in my brain too fast.

    karen
  6. Marta608

    Marta608 Member

    Tell us more! So, are you back to your pre-CFS condition and energy levels? How do you know how much of each supplement to take? Have you figured all this out on your own or did you have advice? I begin to do research, then become exhausted and have to quit.

    I know that feeling of thinking your heart might stop; sometimes, as I've explained it before, it feels like the next step is death. The 5-HTP is, I can tell, just one factor in what I need.

    Thanks.

    Marta
    [This Message was Edited on 12/05/2006]
  7. Catseye

    Catseye Member

    For the first 1 1/2 years, I lay in bed suffering waiting for my doc to figure something out. I remember seeing cfs on the net and telling him I have all the symptoms. He said it didn't exist. God, I hope his pickle falls off one day!

    Anyway, I started getting on the internet and trying to figure out what to do. it's taken 2 1/2 years of looking, but I've finally got the right mix of supplements and food and I'm getting better. Problem is, I've been mostly bedridden and my muscles have wasted and I have to go slow plus I'm always conscious of preventing a crash. I've been able to spend alot of time reading now.

    I've started my "what worked for me" thing but it's so long and involved, I'll have to do it little by little and keep adding to it. I have to go through Cheney and Teitelbaum's articles and my notebook and it's hard on my brain. I'm getting tired, but I'm not crashing and I don't feel bad. This is what I've found for my particular problem. I had hep c and did the antiviral chemotherapy for it, the pegalated interferon and ribavirin pills. It screwed up everything and almost killed me. At first, I couldn't hardly read and that's why it's taken so long. I'm not back to normal yet, but I'm sure I'll get there now.

    I have been researching supplements and cfs symptoms (mito malfunction, lactic acid buildup, anaerobic energy, low blood volume, bad oxygen transfer, etc.) and figuring out what supplements take care of what symptom and making sure they don't harm the liver and what dosages are good. I had no help at all, I've been to about 10 doctors and gave up with them. I was only taking a few things when I came across Teitelbaum's article. He gave some good pointers, then I found Cheney but it took me months to go through it and understand it. I would read 2 minutes and have to rest for 10. And that was a good day. It was sloooowwww going. I have everything I take written down but I have to go back through Cheney's article to remind me the reason for every last one of them. I'm putting it in my "protocol" but it's really a mixture of mine, Teitelbaum's and Cheney's. Cheney would list a problem of cfs, like RNase-L, and I found other supplements as well as his that take care of that problem. I did that with everything.

    It was last month I was really bad and getting very angry because I had been better. So I got all my pills together and ordered the ones I didn't have and started taking everything together (about 30 supplements daily) and it worked! This probably wasn't the smartest thing to do but I was desperate. I'm going to need a couple of slow days to recoup my poor brain from thinking too much but I'll get it done. Anyone with liver problems can pretty much take what I'm taking, I've made sure they won't kill me. karen
  8. Marta608

    Marta608 Member

    What a great story of intellect and determination! I applaud you, Karen. I hope you only keep getting better and better.

    Marta

    I came back to title this with your screen name so you'd be sure to find it. m.
    [This Message was Edited on 12/05/2006]