Discussion in 'Fibromyalgia Main Forum' started by victoria, Feb 7, 2007.

  1. victoria

    victoria New Member


    At the recent IACFS conference, researcher Paul Nestadt described findings from a study of neurometabolites in CFS undertaken by a team of researchers led by Dr. Dikoma Shungu and funded the CFIDS Association.

    In an attempt to understand the neurobiological effects of CFS and to discern potential biomarkers for the illness, these researchers used cross-sectional neuroimaging to compare regional brain metabolite levels and to examine the association of the neurochemical findings with the symptomology of the illness.

    Studying metabolites involves looking at the unique chemical fingerprints that specific cellular processes leave behind. In particular this study examined the neurochemicals in the brain and spinal fluid for differences related to CFS and what that might suggest about the illness, particularly compared to disorders with demonstrated symptom overlap such as major depression or anxiety disorders.

    Using an MRI technology called proton magnetic resonance spectroscopic imaging (H MSRI), Shungu, Nestadt and their colleagues examined 16 CFS patients, 16 healthy controls and 16 patients with generalized anxiety disorder (GAD)—a condition marked by worry, fatigue and impaired concentration.

    Regional brain metabolite levels were obtained, including ventricular lactate in cerebrospinal fluid, N-acetyl-aspartate (NAA), total choline-containing compounds and total Creatine (tCR).

    What they found was that ventricular lactate levels were significantly elevated in CFS patients compared to GAD patients (297% higher) and healthy controls (348% higher).

    CFS patients also exhibited significant elevations in NAA to tCr ratios in the occipital hippocampal region of the brain and other chemical variations in other brain regions.

    In all three groups, lactate levels positively correlated to levels of fatigue, and within CFS patients, specific neurochemical levels could be correlated to depressive severity.

    These preliminary results show that a significant portion of patients diagnosed with CFS have elevated ventricular lactate levels, potentially suggesting anaerobic energy conversion in the brain and/or mitochondrial dysfunction—the mitochondria being the energy conversion “power plant” of a cell.

    Findings also clearly support a biologic difference between CFS and neuropsychiatric disorders such as GAD. Additionally, marked differences in hippocampal glutamate appear to distinguish CFS patients with accompanying depression from CFS patients without depression.


    Well even tho they don't suggest what one can do about it, I'm ust glad they're proving more and more thru hard science that something is different about us!

    Makes sense about the mitochondrial dysfunction -

    one woman I know was lucky enough to be able to get a test (a cell biopsy) that normally costs $20K-plus while she was working and had insurance; I don't know anyone else who has had this test, wonder how often it gets performed due to cost.

    Anyway they found her mitochondria were 'dysfunctioning' but had no remedy for it. On that basis, she got her SSD, that it caused her chronic fatigue and fibromyalgia both (altho it still took her 5 years!)...

    all the best,

    [This Message was Edited on 02/07/2007]
  2. virtuoso

    virtuoso New Member

  3. jmcdelaney

    jmcdelaney New Member

    I am familiar with both the hippocampus and the occipital lobe, but thought they were separate.

    I have been searching the web for the "occipital hippocampal region" and can't distinguish where it is. Can anyone clarify for me?

    The reason I ask is that all my symptoms started with swelling and headaches in the area of my right occipital lobe (which after examination was told it was my trapezious muscle in spasm). Just wondering if there may be a corrolation.


  4. Lichu3

    Lichu3 New Member

    The hippocampus is deep in the center of the brain. "Occipital" means the region of the hippocampus near the back of the head. I think what the article is referring to is the hippocampus specifically and not necessairily the back of the head itself.
  5. Mikie

    Mikie Moderator

    Thanks for the info. I did post a little something in response to Karinaxx's post on the meeting regarding the mitochondria. Finally, after recovering from the gb surgery and the root canal and sinus infection, I am back to starting to feel better. This tells me that our mitochondria are capable of producing ATP but that when our CFIDS is bad, something happens during the Kreb's Cycle which inhibits our ability to produce energy.

    I just got back from Atlanta and my nose and sinuses are a bit stuffed up from the cold, dry air. I truly love it up in your neck of the woods but I've grown used to our humidity. We went to the Ballard Design Backdoor outlet near Atlanta. I got a beautiful antique white porcelain pumpkin tureen and ladle for $10; it had been $45. There is an even bigger outlet in Roswell.

    I put a new pic of Andy and me in my profile. OMG, the child is almost 35 pounds and is only 18 months old. He runs, dances, and sings; there is never a dull moment. He wears me out just watching him.

    Hope all is well with you. Take care.

    Love, Mikie
  6. victoria

    victoria New Member

    Wow he sure looks older than 18 months! Cute picture of both of you!!! I'm glad to hear you're feeling better, hope the upward curve continues for you finally. It's too bad you were up here for our cold weather tho, altho maybe it was nice for a (very brief) change?

    I keep forgetting about that place (Ballard)... one of these days when I need a break I will get there; in fact I have to make up a list of those places LOL!

    Well I am headed your way, LOL, going to Madeira Beach in a couple of days to visit a friend who has use of an efficiency apt for the month... will be nice to get away for a week and have some warm air and humidity, tho of course I won't be soaking up the sunshine LOL! --And my DH will get a chance to really appreciate me as he will be on his own with his Mom, altho of course he'll have the help of our kids and daytime helpers...!

    And, when I get back, I will be (finally) starting phase 2 of the MP... looking forward to it sort of, but also not, no fun to herx; as it is, I had to repulse the abx, but also had flu etc. interfering...

    all the best,

  7. karinaxx

    karinaxx New Member

    i would like to know what specific tests they are talking about? exact medical .......
    i am in the moment to brain foged to do more research on this, any idea?

  8. Mikie

    Mikie Moderator

    Victoria, we are having very unusual weather down here. It is cool, not cold, and raining all day today. We almost never have that after Halloween. This whole year has been an anomaly because of El Nino. The upside is that El Nino makes it difficult for hurricanes to form. It sure didn't have any effect on those tornados, though.

    I wish we could have driven to the Ballard's in Roswell as it's three times the size of the one in Atlanta. One of the things I love about Atlanta is that there are a lot of places which really do have good deals. I'm sure Tampa and Miami do too. I find some good buys down here from time to time but nothing like one can find in a larger city. Guess I really don't need more stuff and certainly don't need to spend more money. Also, shopping is an endurance sport and I still have my limits. Hope you get over the flu and can ease into the next phase of the MP. My friend with Lupus can't go out in the sun. She has bought some clothes which let air circulate but blocks the sun's rays. I don't know where she gets them. Have fun in FL and I hope the weather cooperates.

    Karina, I am not familiar with these tests. My only research has been into the mitochondria and Krebs Cycle and how it all works to produce ATP. It's a very complicated process and even docs sometimes cringe remembering studying it in med school. I liken it to the internal combustion engine which also uses chemicals and an electric charge to produce power. An engine is simpler, by far, than our mitochondria. Anything can go wrong at any step in the process to block their ability to produce energy. Wish I could be of more help.

    Love, Mikie
  9. victoria

    victoria New Member

    Mikie - Thanks,that's good to know... so when I do have some time, I know where to go... and not waste my precious energy! I don't really need any more 'stuff' either esp since we're trying to downsize, so not sure what I'd be looking for? but sometimes it's just fun to look I guess.

    Karina - I don't really know what the tests would be exactly, or if it's even generally available to the public (even if insurance would pay for it). You actually might want to contact the CFIDS Association since they funded the research, or even the researchers themselves and ask, they are often amazingly nice.

    As far as the test my friend had that showed mitochondrial dysfunction, if you're interested in that one as well, I've asked her what the name of it is, and will get back to you with the name...

    all the best,
  10. karinaxx

    karinaxx New Member

    thank you both.
    yes i would be interested in the mitochondria thing.
    i studied this a few month back , but lost all this somehow. i have so much stored on my computer, that i dont find it anymore.


    My son wants to say hallo and post some smileys

  11. victoria

    victoria New Member

    My friend said it was 'a lot' of tests:

    "It was a muscle biopsy which was done under general anesthesia and then it was subjected to many, many tests including DNA sequencing. "

    It sounds to me like the cells were tested functinally every which way possible by a very thorough doctor who believed her; she didn't say what kind of doctor did it unfortunately, but will try to find out.

  12. Catseye

    Catseye Member

    There's an article explaining them in detail but the substances the mitochondria use to produce ATP are all available in supplement form at the local health food store. I've been taking them since Nov and haven't crashed since. Here's the article:

    The four mentioned in the article are:


    I have researched and also found that creatine, glutamine and nadh are part of the cycle, too.

    Every morning, the first things I take are:

    nadh (5 or 10 mg)

    ribose (on empty stomach, 1 tsp then again in afternoon)

    magnesium (glycinate, taurate, malate or a chelated form is best) 200mg and more throughout the day

    coq10 - 200 mg twice a day, oil-based gel cap, not capsule with powder

    acetyl l carnitine - 500 mg 3x per day

    I also take alot of other things, lots of aminos and electrolyte solution, but these "mito fuels" are the best energy producer I've found. I had used all of them before at one time or another except for the ribose. They have to all be taken together and the punch they pack is really powerful. I went from bedridden to walking around in 2 days. And I haven't been back to bedridden since.

    I'm finally healing and getting my life back and I owe it all to this article and the protocols of Dr.s Cheney and Teitelbaum. I think anyone who has a lack of energy should try these. Look them up to make sure they won't interfere with any medication and start with low doses. It's really a shame doctors aren't allowed to recommend these.

    best wishes,

    [This Message was Edited on 10/09/2007]
  13. Mikie

    Mikie Moderator

    I am so happy that this regimen is working so well for you.

    Some people, though, simply cannot utilize supplements. They will test with normal amounts in the blood but the body just can't use them. Still, with one's doc's approval, it certainly is worth a try, especially with the results you are getting. Please keep us updated. I hope your healing continues.

    Love, Mikie
  14. victoria

    victoria New Member

    Karen, my friend cannot take most of those supplements, especially CoQ10. Many in my local support group cannot take many supplements. It's amazing what we can end up sensitive to. I never realized til about 6 months ago for instance I cannot drink green tea altho I can drink black. (I start itching and wake up in middle of night, & I experienced the same with Olive Leaf Extract.)

    KARINA, my friend emailed me that her "doctor was Dr. Shoffner who is "THE" mitochondrial doc in Atlanta (if not the country!)."

    his bio:

    Dr. John Shoffner is board certified in Neurology, Biochemical Genetics, and in Molecular Genetics and directs the Molecular Laboratory at Horizon Molecular Medicine. Dr. Shoffner is internationally recognized and called upon for his work (clinical and research) with rare diseases (mitochondrial disease) and has authored over 70 research publications.

    Hope that helps.


    [This Message was Edited on 02/13/2007]
  15. karinaxx

    karinaxx New Member

    thank you for all this information.
    It seems, that we have one more rare (or rarely diagnosed)illness to include in out list of tests; one more so difficult to obtain.


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