The BIG ME/CFS Kahuna?

Discussion in 'Fibromyalgia Main Forum' started by mindblower, Nov 15, 2008.

  1. mindblower

    mindblower New Member

    Hi, Everyone.

    I just met with my neurologist headache specialist the other day and had to tell him the latest med. he tried on me failed for possibly relieving my remaining and worst ME/CFS symptoms. So he went over his notes, which included my original input that the theory of excessive calcium influx(toxic entry) into the neurons as a result of upregulated glutamate activity, which commonly happens in many neurological conditions, interestingly, might be central to my troublesome brain symptoms.

    Head traumas too(at least temporarily) as well as post infectious(or alt. post biological stressor) entities like ME/CFS, if Dr Goldstein was correct, do seem to share this same feature also. But what to do after so many treatment failures one might suppose would've addressed this?

    I've obviously conquered my flu-like symptoms, post physical exertion symptoms, Hashimoto's hypothyroidism, etc. by means addressed in my profile. But "The BIG ME/CFS Kahuna", the key brain symptoms remain.

    My new neurologists newest answer: Keppra

    Keppra is an anticonvulsant-calcium channel blocker, a direct approach to the thought and theory at hand. And it's interesting to note that a least a few researchers have hypothesized, based on ME/CFS brain SPECT data, that this condition may be a channelopathy of sorts and at least one thinks glutamate excitotoxicity(excessive calcium influx included) is the most glaring brain issue in us, far more problematic than low GABA or other presumed trouble spots in neurotransmission.

    Has any one here tried Keppra for treating ME/CFS?

    [This Message was Edited on 11/16/2008]
  2. bakeman

    bakeman New Member

    i tried it the first year into my illness perscribed by a neurologist w/ no success.

    good luck w/ it.
  3. simonedb

    simonedb Member

    hey so mindblower
    would this mean too that taking calcium as a supplement is contraindicated? i have noticed this year that I dont feel good when i take calcium so have stopped, not sure what thats about but i know in theory i should be taking it cus of potential osteoporosis. oh well.
  4. simonedb

    simonedb Member

    also i looked at yr profile and you have tried a lot of stuff, but i can't tell which aspects you feel were effective to get u as far as you are. there are some similiarities to my situation, mine might have started with mono but then got re-triggered again years later after surgery and other phys trauma. anyway, you like goldstein is that right? i read the book awhile back never saw him but have seen docs like him willing to experiment and i have tried and continue to try a lot of meds
    but you know cheney says problem with going for just feeling immediate relief with a tx is in the long run it could cause more harm. i think that is true in some situations with some meds/approaches, so not sure i can trust what feels good but feel pretty confident i can trust that what feels bad is usually bad, at least in large amount or frequently.

    anyway, very curious what has worked and how this new idea pans out for you, i havent looked into that one and this year just started thnking about it more again, the calcium channel blocker, not up to par on that info right now.

    also my new primary care doc locally who is open to helping with cfs/fms but limited says he thinks gluatmine good for those conditions often. i did try glutamine but didnt like it, can't remember why not. has that been helpful for u? i cannot handle msg and n-ac gives power headache too.[This Message was Edited on 11/15/2008]
  5. mindblower

    mindblower New Member

    Here's the part of my profile you seem to have missed:

    "...Modestly helpful treatments worth mentioning: Small dose elavil, benedryl, and klonopin(all for sleep) as well as non-oxidized whey protein that eliminated ME/CFS related hypothyroidism, orthstatic intolerance(OI), diabetes insipidus(DI), and flu-like weakness"

    Also, Dr Cheney isn't against medications as you seem to be impressed, he's willing to prescribe them and does not too uncommonly, though they aren't his focus. Unfortunately, however, his focus doesn't work or hasn't, not at all according to plan at least.

    He makes no breakthrough claims about his experimental treatments and shouldn't. Then as to the toxic calcium influx issue, I doubt normal calcium in the diet or known needed calcium supplementation would effect this mechanism, but I'd be careful about experimental protocols calling for exceedling high doses of it when you have ME/CFS.

    Calcium wouldn't really be the problem anyway in theorized ME/CFS glutamate excitotoxicity. It's the post infection brain cell injury or some dysfunction similar to what this may entail that's allowing too much calcium into the neurons that's the issue.

    Use of a medication such as Keppra is one rational attempt at intervening-providing relief from the symptoms from such a dysfunction where nothing else has worked, unideal as pharmaceuticals may seem.


    [This Message was Edited on 11/16/2008]
  6. znewby

    znewby Member

    That is interesting that you achieved some improvement in relation to diabetes insipidus. How long do you estimate that you took the whey protein before you noticed an improvment in that area?

    Unfortuneately, my daughter gets sick to her stomach on that whey and so does not take it.
  7. simonedb

    simonedb Member

    thx for highlighting what worked, I spaced it.
    benadryl has been a lifesaver for headaches/inflammation at times for me.
    oddly never liked/ impressed much with benzos. meds that work with opioid system more key for me, darvon and now LDN lifesaver with pain and darvon bought me energy over the years I wouldnt have otherwise had, but looking for other options for now as it lost a little luster after 16 years on and off.

    anyway, re cheney, i know he prescribes meds but i meant his warning on certain things like ssri's is that just cus feels good today may not feel good tomorrow and may kill cells. LIke what happened with positive inotropic agents used to treat heart failure
    years ago they eventually learn cause more damage and stopped using. I tried provigil and initially seemed to help and then it caused double vision and killer eye aches and headaches(in short order). Maybe its like michael doing coke, probly felt good in the 80s til it caused parkinsons.
    Is your approach now safe that way? if so I would definitely try it, keep us posted, wish there was more info about it!
    maybe more people will see this here and post.
    thanks for the info about calcium.
  8. simonedb

    simonedb Member

    what about trying that one? I just took a quick peek at goldsteins chapter on ccb and this one sounds up my alley, good for fatigue, headaches, retardation.....check check and check.

    in addition, I just did a search at experimental yahoo for cal channel blckers and wow hit the jackpot, if you havnt checked it out wealth of info in 2006 there, check out a post from 2-4-06 on calcium, cites a ton of research how it effects not only cfs but autism and interestingly some of the posts citations say tht cal supplement is contraindicated and problematic and even more interesting tht naltrexone also regulates the
    disorder of intercellular calcium!

    [This Message was Edited on 11/16/2008]
  9. aftermath

    aftermath New Member


    Both from my personal experience and what I have read, I firmly believe that the cause of ME/CFS is neurological in nature (at least in my case) and not an active infection that is disrupting things on the cellular and/or mitochondrial levels.

    I got sick very suddenly during my sophomore year in college during a period where I overdid it beyond belief. While I did have a brutal respiratory illness during my onset, since then I have tested negative for every virus under the sun (negative HHV-6, even negative EBV). Still, my brain SPECT was abnormal (moderate cortical hypoperfusion) and my tilt table was positive.

    In addition to the sudden onset with no depression etc, many of my symptoms are classic. I went from requiring 5-6 hours of sleep/night to being exhausted after 12+, went from 90th percentile strength for my age in the gym to about 30%, developed tremenous brain fog, etc.

    The one thing that is very abnormal about my illness is that I still tolerate cardiovascular exercise extremely well. In fact, I started running because it is one of the only things that helps with the cognitive dysfunction.

    What you outline is very similar to the theory championed by Dr. James Baraniuk of Gerogetown--his theory is that protein misfolding in the brain is causing some issues with gated channels in the lower part of the brain.

    To answer your question, I have never tried Keppra. I will be interested to follow your progress if you decide to give it a try.
  10. bigmama2

    bigmama2 New Member

    just FYI- amy yasko (a "dr" of some sort who treats autism) has some theories about this- excess calcium influx into cells, and glutamate over exciting the cells. (i saw this on a dvd of hers that a friend lent me.) her main treatment involves trying to improve methylation.

    good luck w the Keppra. glad you have made such good progress overall w your CFS.

  11. mindblower

    mindblower New Member

    Nimopodine provided no benefit when I tried it. But, the idea is to keep trying different treatments and to use a sound rational basis for each trial versus ungrounded-nebulous trial and error too often causing unnecessary loss of money and time in ME/CFS.

    Also, the calcium influx issue tied to glutamate excitotoxicity in ME/CFS may have something to do with protein misfolding suspected by Baraniuk, but it also may simply be an outcome of brain cell injury from chronic hypoxia(abnormal low oxygen) and/or perhaps acute hypoxic episodes brought about by common infections that come and go, not any exotic active infection still hanging out. Methylation problems and low glutathione have been proposed as the upstream cause for all these.

    However, in ME/CFS, it could be predisposing genetics for neurotransmission more vulnerable to causing the brain to overreact to stimuli of any sort that drives up demand and use of adrenaline that is at root. And chronic upregulated adrenaline use(felt or not) has been shown or at least linked to lowered glutathione status.

    A vicious circle involving many factors is obviously imaginable in ME/CFS, but not to fret as common sense says deal with the root issues and the rest will fall. Treatment results, the ones that stick no doubt, are key to determining if a root issue has been effectively addressed.

    And it's perfectly fine to hold theorists, their credentials and supposed effective treatments, feet to the fire. This is particulary important when they don't produce the treatment results promised or when the results actually derived, not speculative lab value improvements, aren't of significant relevance to you.

    Are you really better, feeling well, a lasting great health breakthrough clearly evident as a result of their treatment?

    Yes? No?(Gray area results need not be tolerated).


    [This Message was Edited on 11/17/2008]
  12. aftermath

    aftermath New Member

    Mindblower, you seem to have a really solid grasp of the plausible theories with regard to this illness.

    I totally agree with regard to gray area results. There are so many "I am 15% better" stories here with various treatments that in my opinion fall within the realm of the placebo effect. Yet you hear next to no stories of 50%, 80% improvement.

    In my case, I have had two terrific breakthroughs (despite hundreds of different treatments) where success was evident to the point that I thought this 15 year hell had finally come to an end. Regrettably, both were short lived.

    The first was when Dr. Natelson put me on Ritalin (methylphenidate). As per his instructions, I put the tablets beside my bed at night. When my alarm went off, I took one and fell back to sleep as usual. A half hour later, I woke up before the 2nd alarm. It was the first time in years that I got out of my bed not thinking "only 9 more hours until I can get back here."

    For about two weeks, I pretty much had my life back. My physical strength literally doubled on it despite the fact that the drug is not know for this effect. I was even getting up to work out in the morning. Yet more evidence that makes me think that this illness is neurological in origin and not on the mitochondrial level.

    Regrettably, after about a week, the positive effects subsided stopped. I managed to get the better part of a second week by up-dosing. By the end of the month, I was at max dose with no positive effects.

    What makes this truly strange is that when I stopped taking the drug for six months and then went back to it, I got NOTHING out of it. I thought that the tolerance would have work off, but it didn't. Dr. Natelson had no explanation. Dr. Baraniuk hypothesized that some switch in the brain had been tripped that has no capacity to reset itself.

    My second big break was after undergoing neurofeedback. I did ten initial sessions with one practitioner with no effect. I then switched practitioners. The first session with the 2nd outfit was mindblowing. The cognitive and orthostatic issues disappeared to the point that I actually didn't want to go to sleep at night because I feared that I would wake up back to normal (bad).

    With this treatment, benefits lasted about three weeks. After a four month layoff, my second attempt with that treatment produced another two weeks of relief.

    Speaking of hypoperfusion in the brain, I have seen discussion of a study evaluating the use of Viagra in ME/CFS patients. It apparently raises cerebral blood flow. Have you tried it?
    [This Message was Edited on 11/17/2008]
  13. heapsreal

    heapsreal New Member

    Did u know lyrica is a calcium channel blocker. Lyrica has helped me with aches and pains of cfs but also helps when brain fog which turns into a type of headache, clears the mind. i only use it occassionally as it puts alot of weight on, so use it when i crash.

    After looking up keppra I see it is related to piracetam, so called nootropic. Have also used this, it worked well initially for say a month then i had a cfs crash and it stopped working.

    I think there is something in the road u are going down. I have found benzos help calm the mind down (not anxiety related) and can concentrate better and have more energy, where most people say it makes them drowsy and sleepy.

    Good luck, interested on how it pans out for ya.
  14. bigmama2

    bigmama2 New Member

    hi there! just wanted to let you know that I am a person w cfs who has improved to a substantial degree. no way in heck its a placebo effect. i dont know how to put a percentage of how much i am improved, but it has to be more than just 15%. specifically- at my worst, for a period of a year or more - I was barely able to take care of myself. I slept for 14 - 18 hrs a day. My family could not believe how much i would sleep, day after day. when i was awake i felt like, uhhh, crappe. it was torture to sleep my life away and to be in my 30's.

    i have done various cfs treatments. only ones that helped- adrenal glandular supps, valtrex, a methylation compounded supplement, and more recently, iron pills. other things that may help - vit d, milk thistle, coq10, low dose naltrexone.

    i took plenty of other supplements that i didn't notice an improvement on.

    now- most days i only sleep about 10 hrs, and i dont have to sleep in middle of day!!! I can take care of myself and my house (housework). (but do not have stamina to work yet).cognitive function greatly improved. now i dont feel like he)) everyday. i wake up feeling sort of refreshed. various other improvements too. I used to feel hungover alot (even though i didnt drink alcohol).

    anyways----- like i said- not sure what % improvement this is. it is very discouraging how few posts we see on here about people who have had substantial improvement. i consider myself somewhat lucky. there was a time when i had basically lost all hope.

    it was very interesting to hear about your 2 great improvements on ritalin and then on neurofeedback. so sorry they were short lived.

    take care
  15. aftermath

    aftermath New Member

    The neurofeedback improvement was profound to the point of being almost surreal. Although they said it would take ten sessions to see improvement, I noticed it roughly five minutes into the first session.

    The clarity of thought was simply surreal. Not only was the brain fog gone, I was better cognitively than before I got sick.

    The next day, I actually took out a physics book I struggled with before and started succesfully doing problems in my head. The thoughts were so clear, that I stopped listening to the radio in my car because I didn't want to be distracted from them.

    Even waking up every day, I noticed it--it was almost as it everything for the past 15 years was a video playing in *slight* slow motion that had suddenly started playing at full speed.

    Put it this way... If you told me that I could take how I felt after the neuro session and keep it forever, but there would be no further progress on the disease for the rest of my life, I would have jumped on it in a second.

    Regrettably, Ritalin, it worked for a few weeks and did not help at all again, even after a long layoff.
  16. mindblower

    mindblower New Member

    Yes, Dr Goldstein had me try viagra. It didn't help my ME/CFS symptoms whatsoever and I think he eventually concluded it wasn't of use for this condition overall.

    On the "upside" of that trial, however, it did provide an extra "enthusiasm" one might expect given its science and advertising. ;) Back to ME/CFS, though, definitely move on quickly from any treatment, medication or alternative therapy, that provides only temporary or subpar performance.

    An "I will NOT tolerate piddly diddly theories and treatments" attitude I suggest works in dealing with this condition and can help this community move on faster from so much wasteful nonsense still mesmorizing too many. It's perfectly appropriate to demand clear solid treatment breakthroughs that stick.

    No more frail and easily disrailed improvement treatments. No more futility and fluff.

    Be brutal about this if necessary. Be willing to be utterly disloyal to anything less than genuine success!


    [This Message was Edited on 11/18/2008]
  17. mindblower

    mindblower New Member

    "Be willing to be utterly disloyal to anything less than genuine success!"

    This is my tone and key point. To miss this this tells me you may be in more trouble than I am.

    You're seeing and hearing things that aren't there, unless of course one of the shoes I mentioned fits. "If the shoe fits, wear it" as the saying goes.

    Tolerating failure in ME/CFS theories and treatments is far more harsh, uncompromising and disrespectful than anything I can say. I know I'm communicating appropriately and to the appropriate audience for this.

    So, what's up for you now that has a chance of success over ME/CFS?

    [This Message was Edited on 11/18/2008]
  18. Atlanta8

    Atlanta8 New Member

    It's all very well dismissing treatments that don't give 100% success, but sometimes just a little IMPROVEMENT will be sufficient to sustain us until we are able to find a treatment/ combination of that works for us is found.

    If it means we can sit up for an extra hour a day, go out an extra time, see friends, shop etc, then it is all worth it.

    Quality. Of. Life.

    I recently found a supplement that supports the krebbs cycle. It has removed my muscle aches and pains and has allowed me to get out of bed and make a few trips out into the real world. I am driving again. Able to go christmas shopping. Go and watch comedy... From being stuck in bed for 2 weeks at a time. Should I just stop taking it because it's not a cure? No. They have not found cures for all of us yet, so in the meantime it is worth finding things that HELP.

    I know you are desperate to find the root cause/ effective treatment: we all are. Like you I am constantly reading and researching possible treatments and am desperate to get better so I see where you are coming from, but there could be danger in your method, eg you could not be giving each protocol long enough to work, or, are dismissing 'minor' improvements when it could be that a few protocols that make a few improvements need to work in comination, or perhaps with other factors such as good diet, sleep routine etc.

    Also remember that many people who succeed with these treatments no longer bother to post on these boards, so we are not getting accurate success rates coming through. From what I have heard many people who started on AVs and various other treatments have stopped posting. It stands to reason that people who are dissatisfied with certain protocols are going to speak up about it more than those who have just got their life back and are making the most of it (and yes, I know you have tried AVs etc and they have not worked in your case, I am just using this as an example).

    I will cut this short as I need to go out now.
    I hope you find success with your current treatment.
  19. Shalome1990

    Shalome1990 New Member

    I will take any improvement I can get. I have had CFS for 20 years, and I will take 5, 10, or 15%. I will keep working/researching and looking/longing to feel 85-100%, but I am sorry, I will take every bit of feel good I can get!!

  20. mindblower

    mindblower New Member

    "It's all very well dismissing treatments that don't give 100% success..."

    I didn't say this, nor implied it. I was very explicit. "GENUINE" success was what I said.

    You're missing a lot in reading what I'm saying and suggesting. Little helpers are fine and common, just not something to emphasize over and to the dismal of better opportunities at this point.

    Again, GENUINE SUCCESS = GENUINE SUCCESS, whatever percentage points that go aside this. Not genuinely successful or the benefits first derived not sticking are all those nonsense treatments people with ME/CFS ought steer clear from.

    I am dismissive of those. How is this not appropriate?


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