Heart, Mitrchondria, Neurotransmitters I'm So Confused

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

  1. Marta608

    Marta608 Member

    And let's not forget good 'ole Candida.

    Everytime I hear a new theory it makes a lot of sense.

    Then they come up with another one that makes a lot of sense. Does anyone know if SOMEbody is actually sorting all this out??

    I do understand that CFS is multi-causal which confuses the issue even more but the heart theory really would impact enough of the body to connect most of the dots, wouldn't it? I mean, with insufficient blood supply the mitrchondria aren't getting what they need nor are our neutotransmitters. I can't relate it to Candida except that if our bodies aren't getting what they need, everything gets mucked up.

    I suppose the good thing is that they're finally working on it. But now I really feel sick! Isn't that odd?? When so many people said it was all in our heads, I kept plugging along but now that they have more proof of disease/malfunction, I just want to lie down on the floor and stay there.

    Marta (I'll be down here if you need me, eating very good-for-me food)
    [This Message was Edited on 07/03/2006]
  2. bioman85

    bioman85 New Member

    Marta,

    Hi how are you? I'm confused by your post - I thought you were feeling very much better since starting the Paleo Diet. Are you having a flare? Hope you feel better soon.

    Chris
  3. Marta608

    Marta608 Member

    ... but I'm having some "fatigue issues" at the moment. lol

    I'd been taking vitamin D and also a magnesium/malic acid supplement along with the diet but stopped them so I could do it correctly, one at a time.

    This stopping stuff is evidently rough on me.

    Regardless, I appreciate the diet's goal; that of eliminating, for the most part, processed food, salt, wheat and most dairy. I could sense that it was making my body happier, if that doesn't sound too ditzy. Still, the supplements must have been doing their share too.

    Marta
    [This Message was Edited on 07/03/2006]
  4. bioman85

    bioman85 New Member

    Sorry to hear that you're not feeling well. Your posts have made me want to change my diet. I did go on the candida diet some months ago with no apparent effect, but I did maintain a healthy weight, and a diet like this is really simple and healthy for the long term. And now hearing about people feeling somewhat better on a healthier diet, I need to do everything I can to try to get better.

    Thanks for the kick in the butt,

    Chris
  5. Marta608

    Marta608 Member

    Chris, I wish I could be your hero, I'd really like that, be completely well with a change in eating habits like it's done for some (and maybe you can be one of them). Believe me, I tried and I will NOT stop the diet, I know it's helping, I could feel it helping.

    I think it's the layers-of-the-onion thing. The diet is one (very thick) layer but for me there's still more onion to go.

    Meanwhile, yesterday I had a very quiet tantrum down here, fists and heels pounding. OUCH.

    Hangingin, yup, get right down here beside me. I've left room for your fists and heels to pound too.

    Along with those layers of the onion, we're a mite anxious about us. Am I understating it? lol And why shouldn't we be?!?! When you think back to how long everyone's been ignoring this illness/these illnesses, how long we've been bearing up under the scorn of the obtuse medical community, our friends, family, society in general - and I don't know about you but, for me sometimes, my own, as many dreams as we've had to let float away - it is no wonder we've become anxious.

    Now with these new, perhaps very good theories, there is hope. But I think hope is like potential; it has a shelf-life. Mine is coming due and when that happens, I get mad.

    Hanging, get in to your doc this week if you haven't already, have an EKG, put your mind at ease, at least about that. I had to do the same thing about four years ago. We need to take action on these worries. With fatigue comes passivity and that's more lethal than the fatigue.

    Hugs to us all and, for us in the US, let us take time to be thankful that we still have that flag flying. Without that, we could be dodging real bullets. Long may it wave.

    Marta

    [This Message was Edited on 07/04/2006]
  6. Marta608

    Marta608 Member

    Yes, Marcia, the tantrum's over but frustration remains.

    I have done a Candida detox and diet, was found to have no pests, have taken probiotics and saw no difference. I haven't done any liver or gland support that I know of, Stormy, so all that's left is that that I know of. Sometimes I think they're just trying to keep our minds off the fact that we're still sick. I went through that with the diagnosis: so happy to know what was wrong with me until I realized that I was still sick!

    Honora, those triggers'll get us everytime. I was sooooooo close for an entire month. I'd really forgotten what good felt like and I'm grateful for it.

    Back to the diet and the drawing board. We'll see what my doctor says tomorrow.

    Marta
    [This Message was Edited on 07/04/2006]
  7. foggyfroggy

    foggyfroggy Guest

    You know, I'm not sure if this will be taken as blasphemy or not :) , but I think that Cheney is a little off the mark - excellent person and researcher though he is.

    I really think the problem originates in the brain (CNS). I am not sure whether it's an active infection in the cells of the brain/nervous system that we may be unusually susceptable to due to genetics or toxins or other stressors, or whether as some say it's like a fuse has been blown in the hypothalamus due to a trigger event.

    Here is an interesting thing that I have noticed in my own body. Nearly all my symptoms are improved when I take medicines that reduce overactivity in my CNS. I use Lamictal, Trazodone and Xanax. The Xanax is not for anxiety although I get that too when I have way overdone it or am in a flare.

    Anyhow, my arrythmias really respond to the Xanax, and they usually occur because I am tired or because of my cycle. So, if it were caused by a problem with my brain that would make sense, but if my problems came from my heart it would make no sense at all.

    All our systems are controlled from the brain, so it would make perfect sense that many systems are disrupted if we have a problem in the brains control center. It is hard for me to imagine why a problem in my heart would cause hyperexitability in the electrical/biochemical workings of my brain.

    It is totally confusing though, and I wish they would get a handle on it - there must be some answers out there somewhere!!!

    I just heard that the CDC has announced that there are actually 4 million people in the US with CFIDS, not the 'up to 1 million' that they were saying recently. If so, can you imagine what the national cost is? You would think the Gov. would be very inspired to get off their duff and fund some serious research!!

    Gretchen

    (sorry I'm so wordy, It's probably hard to read all this while laying on the floor - it puts such a crik in the neck! ;-)
  8. Marta608

    Marta608 Member

    Exactly. About the crick and about the CNS. ;>)

    For eleven looooooonng years I've been convinced that my "illness" originates in the CNS. It makes sense, as you say, in light of my symptoms and the things that help me, (all except SSRIs. They don't help me, they do damage.) Getting rid of sugar and additives, eating more raw and steamed foods has been helpful too. But then, who wouldn't that help? We are a nation of junk food and pretend food.

    Even though I was convinced about the CNS involvement, I've been willing to make a fool out of myself (THIS is IT) going on detoxes; taking Candida killer supplements because an Amish practitioner in a corn field in Indiana said I had yeast; trying drugs; eating some things and not others. No wonder some people think we must just be neurotic. We BECOME neurotic trying to find a way out of this mess.

    And yes again! For how long did we hear that "up to 800,000 people in the U.S. have this syndrome". For 30 years. Now all of a sudden, it's more realistic - millions and growing.

    I'm pretty sure that CFS is caused by different factors for different people or at least in some people, and that some of us may not have CFS at all. Look at how many have eventually been diagnosed with other disesases.

    But like you, I'm tired of the dilly dallying and the Pick A Syndrome game. I want answers. I don't know if Cheney or Myhill or who has them but I want them.

    Maybe we could all somehow hire ambulances and circle the CDC until they cough it up. No pun intended. Where IS the CDC, by the way?? IS there really a CDC? One must wonder.

    Gretchen for President!

    Marta
    [This Message was Edited on 07/04/2006]
  9. foggyfroggy

    foggyfroggy Guest

    OH LORD NO!!!!!!! NOT THE PRESIDENT!! LOLOLOL! I'll just be down here on MY floor beating my fists and feet on the floor! But then again, . . . . I could bring our troops home which would be great . . . . . OK then, but just for one day. :)

    SSRI's do me major damage too, I will never be talked into trying one again. The last one my doctor wanted me to try put me into seizure type stuff which is why I am on the Lamictal!

    I think you are right on the mark with food; our culture eats so much garbage! Garbage as a way of life. I am soooo careful of my diet now and I think it really helps me.

    Don't feel bad about getting caught up in the 'Surefire Cure/Supplement/Treatment/Etc.' game, the hard thing is that some really do work for some people.
    Then there is the "Onion Effect" where if you can peel away some of the things that you may have that can impair the healing process then that really can help. The trick is in figuring out what other stuff may be complicating things - like all the people who do have Candida or Mycoplasma or or or or (the list goes on and on).
    There has come a point for me though where I am tired of wasting money that we don't have. I think diet is one of the most important things and hey! I'm already spending money on eating anyway ;-)

    Yeah, who are those CDC guys anyway - they seem pretty shady to me. We should have a contest to see how many things we can get the letters CDC to stand for. The last letter should probably stand for "Clowns".

    Gretchen
  10. foggyfroggy

    foggyfroggy Guest

    That's really interesting about the Lamictal! Too bad you couldn't have stayed on it if it helped so much.
    I wish it had 'cured' me like the guy from Australia!! It was originally prescribed for me because of seizure activity brought on by Effexor (beware beware beware) but I was glad of the help with mood and sleep too. I have not had any side effects at all from it but I do wonder about long-term effects as it is still a relatively young drug. It has gone generic now though at least so my bank account is happier! I do hope it won't turn out to be a lifetime sort of drug but I wouldn't care to try being without it right now.

    Gretchen
  11. Marta608

    Marta608 Member

    Gretchen, I agree with you about (a lot of things as well as) being tired of wasting money AND energy and hope.

    Today my new doctor suggested I go to a specialist in the City and I'm dragging my feet. Anoooother time of hoping, anoooother chance for disappointment. I was telling someone today that I'm at the point of wanting to abandon the medical community for this issue and just do what I can do to find any quality of life available to me, be it ever so humble.

    Then I spend yet another holiday alone and get all antsy to work harder.

    Gigi, of course I'd love your email address. Believe me, I didn't know this was possible. Do I have a story to tell you.... How do we go about it?

    A shanty on the Pacific Ocean sounds perfect but Gigi, dear, you're perfectly capable of decorating it beautifully youself. I would love to come for a consultation only if it includes the sunset.

    I love "cottages"; in fact, Cottage Living is the only magazine I subscribe to anymore after years of many of the others. My, how I can get sidetracked... Yes, we need addys! I really missed you.

    I assume you stopped the Adderal because you know it's good to take a break but how interesting that it helped you so much. I know nothing about it. Of course different things help all of us differently but I'm happy you found something to help you. You will, I assume, be going back on it?

    OK, I'm too OT here and I'm hungry. I'll catch you all later.

    Marta
  12. Marta608

    Marta608 Member

    webintrig, I was talking about the Paleo diet. I had a post somewhere around here that was called (something like) If You Want To Feel Better Read This. It's a long one but it's very good. Not a cure-all right away but one of the basic steps.

    Let me know if you have any questions.

    Angel wing hugs back. Awwwwwww. nice
    Marta