IanH - question re post-exertional "malaise"

Discussion in 'Fibromyalgia Main Forum' started by mbofov, Aug 6, 2012.

  1. mbofov

    mbofov Active Member

    (I have to put "malaise" in quotes as it nowhere begins to describe what happens post-exertion with CFS)

    Anyways, you seem to have quite a technical background. I was wondering if you have any insight into or suggestions for resolving the problem of post-exertional crashing. I've taken every mitochondrial supplement around, have done the methylation protocol and a variation thereof (Freddd's B12 protocol on Phoenix Rising), my diet is pristine, etc. And I still crash.

    Heavy metals may be the problem, and I was doing a mercury detox (Andy Cutler's protocol) which had to be interrupted due to personal problems but will be getting back to it.

    Anyways, wanted to know if you had any suggestions - thanks!

  2. IanH

    IanH Active Member

    From my experiences, observations and discussions with people with ME, FM and MCS.
    P.E.M. is common to all of these but many say their "malaise" is a reaction to more than just exertion and that their exertion event has worse effect if combined with chemical exposure or with psychological stress. By chemical exposure I include food toxins and drug/supplement overdose or hypersensitivity.

    Following from the research of Alan Light etc. exertion induces elevated pro-inflammatory cytokines especially in the CSF and probably in the brain interfering with normal neuronal transmission. There is some evidence that the brain interference includes increases in excitatory neurotransmitters such as glutamate.

    There is no doubt that physical exercise is critical for improvement while at the same time being a trigger for the reaction through the elevation of the inflammatory proteins/cytokines.

    These are the things I examined:

    How long have you been on the glutathione -mitochondrial support regime?
    What did it do for you? If anything? If it was useful which components do you think were helpful?
    If you have been on it for more than 6 months its time to switch to a maintenance regime involving the most useful components (typically B12, folate, CoQ10, B6, Niacin and acetyl-cysteine)
    Also include 1000mg Taurine and 1000mg Creatine twice daily. Taurine as a neurological anti-inflammatory. (While it is Taurine--chloramine or the taurine salicylate derivative that has most anti-inflammatory effect, taurine itself is also anti-inflammatory. Taurine also improves nerve conduction and has been used in carpal tunnel syndrome. This is important because some of the fatigue is coming from slow conduction.

    Also the essentials: magnesium (citrate, malate, threonate or taurinate) and vitamin D3 with K2.

    Metal chelation therapies sometimes involve EDTA. This is to be avoided in ME. It will increase chemical sensitivity.

    Rigorous stress reduction has a good inhibitory effect on your brain. That is your brain needs as much quietening as it does nutrition. Try to learn the early warning signs of "excitation" or anxiety, such as tremor, buzzing, skin hypersensitivity, irritability, headaches.
    Remember that neural excitatory reactions push up inflammatory cytokines in the brain.

    Focus on sleep quality, be rigorous about sleep habits, avoid stimulants and diuretics after 7pm. Get plenty of sun during the day. The more bright sunlight you are exposed to the better your sleep will be.

    Avoid sitting for periods longer than 30 minutes. If you have to sit for more, then break it up with stretching exercises.

    Devise an exercise plan for execution three times a day. Do it religiously. Start with simple stretches and extend slowly. Do deep breathing exercises and expand the chest as much as possible. Think about where you key pain/fatigue areas are on your body. It is not usually a general reaction, certain muscle groups are reacting more than others. (Mine are: neck, forearms, lower back, back of knees, ankles and top of feet). Other people have also reported; chest, stomach zone, wrists/hands, thighs and calves). It may seem like it is everywhere but try to localize the fatigue in the form of "heaviness", "slowness".

    I know these are basics but they are what we are doing as a program.

    regards Ian

  3. FaithHopeCure

    FaithHopeCure New Member

    Very thorough program of wellness! I am following all of the above and also adding phosphorlated serene (seriphos) for cortisol support and sleep.

    Also, gluetin free diet helps me tremendously. All of the above lifestyle changes are a must in order to feel an improvement. I had tried many of the suggestions listed separately and did not get any improvements.

    It is a total commitment to csf/fibro health and lifestyle changes that require a lot planning and staying on a schedule. When I am off schedule with eating, sleeping, excersizing or the supplements I quickly feel a difference and adjust the problem for a quicker recovery.
  4. mbofov

    mbofov Active Member

    Thanks for your very detailed suggstions. I've already incorporated most of them.

    I've been taking mitochondrial support supplements for many years. I started taking l-carnitine and coq10 some 10 years ago. The l-carnitine gave me an initial boost of energy and stamina which lasted about a week, and then it stopped. I started d-ribose 7 years ago and noticed an increase energy, and now I don't, but I keep taking it as I think I might be worse off without it.

    I've been taking B12, folate, CoQ10, B6 and a good B complex (I've taken niacin and noticed no improvement). I also take N-acetyl-cysteine and have for several years. I've been taking B12 (including injections) for some 15 years or more, but started the folate (metafolin) a year ago last April. I noticed a marked increase in energy with the folate but it did not stop the crashing. I just felt better in between crashing.

    Also take lots of magnesium citrate and lots of D2, though not K2, so should add that.

    The chelation I've done for mercury uses DMSA, not EDTA.

    I meditate daily and rigorously avoid stress. I went to Al-ANon for 10 years and learned some very basic and very good coping skills. I've gotten very good at minimizing stress and not worrying and just dealing with life as it happens. So stress right now is not an issue and if I do get stressed, I deal with whatever is going on instead of worrying about it, and if I can't do anything about it, I let it go.

    I am religious about sleep and do get 8 hours a night.

    from my experience, my crashing is directly related to physical exertion. I have a limit of 3 to 4 hours a day of light activity (not continuous, with rest breaks) which I can do and not carsh the next day. If I exceed this limit, I am guaranteed a crash. The other morning I had to do rather heavy (for me) physical exertion, moving some boxes, doing dishes, a few other things without breaks (this was related to new carpet) for 2 hours, and was flat out the next day with muscle aching and somewhat the day after that too, but that was unusual for me - generally I would never do that much in one stretch.

    I don't have pain like other people do, "just" post-exertion crashing. Sarah Myhill beleives that it is due to our bodies switching to anaerobic metabolism (for some unknown reason) which greatly inhibits the production of ATP and causes a major delay in the production of ATP, which explains the delayed onset of fatigue (it generally hits full force 24 hours after exertion) and the lengthy time needed to recuperate. Exercise is not my friend. Also, The Pacific Fatigue Lab at the University of the Pacific at Stockton is doing groundbreaking research in this area. They give exercise stress tests to CFS patients on two days. On the first day, the patients do fair, not as well as others but generally nothing extreme, but on the second day - POST-EXERTION - they get unprecedented results - oxygen production drops 50% or more, one 20 year old appeared to be on the verge of heart failure. THis is what happens with PEM.

    I also did Richvank's methylation protocol off and on for 3-1/2 years and did not improve on that.

    The only thing I haven't really tried is the creatine you recommend so I may add that in. I can't take taurine because it causes a severe detox reaction for me (another reason I think heavy metals or something similar may be involved)

    Rich has postulated that the PEM may be due to a virus or heavy metals and I think Sarah Myhill echoes the same ideas.

    My diet is really good and has been for several years (no processed food, sugar etc.)

    I don't have generealized fatigue all the time. My fatigue hits 24 hours after exertion. I actually have days where I feel normal and would happily go 5 or 6 hours doing things, but if I do, I pay heavily the next several days.

    I guess I was hoping for a magic bullet but don't think there is one. I'm planning on restarting the mercury detox with teh dmsa next week. I had a major home disaster (sewage backup) which has taken 2 months to resolve, but is finally over.

    Here's a link with lots of info re PEM and also to research by the Pacific Fatigue Lab: http://www.research1st.com/2012/05/25/pem-resources-for-you/

    Thanks again for all your input -


    [This Message was Edited on 08/07/2012]
    [This Message was Edited on 08/07/2012]
  5. IanH

    IanH Active Member

    PEM means "post-exertion" and is the defining criteria for ME. The delay of onset of the "malaise" can be anywhere from hours to days. I myself typically experienced the worst effects 2 days later yet believed I was fine for several hours after the activity.

    You mentioned "new carpet". I have never yet met a person with ME who could tolerate new carpet without suffering for days and days.

    The tests available by Pacific Fatigue Lab were pioneered by Prof. Light several years ago.We understand much of what happens in this PEM but relating the symptoms to the biochemistry isn't easy, that is why no solutions are available. Its one thing doing tests, its another coming up with treatments that apply.

    Good luck with the detox. However DMSA does not cross the BBB and will not influence metal toxins in the brain. But then it is not intended for that.
  6. mbofov

    mbofov Active Member

    I think I'm lucky - I have not reacted to the new carpet. I don't have MCS. I just have a very limited tolerance for any sort of exertion.

    I know that PEM means post-exertional "malaise". Most people, when I mention CFS, think it means I must be tired all the time and I have to explain about hte delayed onset fatigue which lasts for days. I have found that if I am tired at all or in the midst of PEM, it is the worst thing I can do to do any physical exertion - it just makes the crash that much worse and last longer. When I'm not crashed, I don't have generalized fatigue.

    When I was taking the DMSA (before my house disaster), it did affect my brain. I became spacey, had trouble concentrating, would misunderstand simple conversations - this surprised me the most. I had expected to be tired and probably feel sick from detoxing, but the mental aspect was most prounounced. It makes me think that it was perhaps pulling mercury from my brain. Or perhaps causing mercury to be redistributed? I don't know.

    I did a little on-line research and find conflicting views on whether DMSA crosses the BBB. It does seem to be established that ALA does cross the BBB, and plan to add ALA (per Cutler's protocol) to my DMSA regimen some time after I restart the detox.

  7. IanH

    IanH Active Member

    Mary, I was just wondering what your total ME related symptoms have been over time. Has your problem always been PEM only? Or were there other symptoms that have abated?
    cheers Ian
  8. mbofov

    mbofov Active Member

    I've had a constellation of symptoms, many of which have abated due to diet changes and supplements.

    Everything started with digestive malfunctioning which started in 1985 and went on for 7 or 8 years - doctors were clueless, did not know my digestive system was screwed up but I just would get very tired periodically, etc. I stumbled across a chiropractor who with muscle testing immediately found a plugged bile duct and something else (cannot remember, this was early 1990's), and gave me some supplements and within a couple of days was feeling a lot better.

    Over the next several years he helped me with an inflamed gallbladder (which he saved with supplements, plus I did a lot of reading and it works great now), toxic liver (did liver detox), stuck ileocecal valve (!). All is much better, I take HCL with every meal and sometimes digestive enzymes, but hte HCL is crucial.

    A couple of times over the years I have felt toxic - slightly poisoned - digestion off, spacey, and a couple of chiros have told me they detected mercury or other toxins. I did have a toxic load from a job I had when I was 19, with heavy exposure to chemical solvents, and the liver detox helped a lot with that.

    Then my adrenals got wiped out and again, doctors were clueless, I was weak as a kitten and one gave me Prozac for the heck of it which I hated, and stopped after a few days. And the then the chiropractor found my weak adrenals and gave me an adrenal glandular supplement and I did a lot of reading and took pantothenic acid and so on.

    And then I got chronic sore throats and was very weak with them (I kept working all this time). ANd then in 1998 I started crashing after exertion. It was fatigue like I'd never experienced before, bone-crushing. And all I could do was sit when it hit and do absolutely nothing. somehow I was able to keep working until 2001 (I don't know how I did it) but finally had to go out on disability.

    Also my immune system was impaired, got sick every time I crashed, and would take around 2 or even 3 weeks to get over being sick (respiratory every time), and then would finally get some energy back but it was extremely difficult not to over do it when I would have a backlog of stuff to do, and so would crash again and do it all over again. I remember at one time I would have 1 or 2 "good" days a month, when I wasn't sick or crashed (but could still do only 3 to 4 hours of activity on those "good" days)

    Today, my digestion is quite good. My immune system is a lot stronger, I think in large part due to high doses of D3 (prescribed by doctor), I no longer get the sore throats. My adrenals are pretty good, though they may always tend to be weak. When my house flooded 2 months ago after a couple of days I started to get a familiar exhaustion, realized my adrenals had taken a hit and started taking high doses of adrenal glandular plus extra pantothenic acid, and my energy started to come back.

    So at present time my worst symptom, which prevents me from doing anything I really want to do, is PEM. I'm limited to 3 to 4 hours of light activity a day - and I have to rest every once in awhile during that light activity - in order not to crash the next day. In other works, I could not go for a 3-hour walk, that would wipe me out in a heartbeat. So things like grocery shopping, laundry, light housecleaning, cooking, doign dishes, take most of my energy. On a good day I get to go to the library. I have very little left over for anything fun or meaningful. I read a lot, do crosswords and sudoku, watch a little tv and visit with the neighbor next door. And also go on-line.

    So the idea of exercise just doesn't work - my exercise is doing the bare necessities of life.

    I think I do have mild POTS, standing in line at the grocery store (or anywhere) is somewhat difficult for me. My impedance cardiography tests I had done several years ago both were clearly abnormal, although a cardio workup done earlier this year I passed with flying colors.

    My immune system is still a little weak, but much better than before.

    I do have middle of the night insomnia which I manage with hops, melatonin, l-theanine and lorazepam.

    I don't have brain fog, MCS, or pain (except for achey muscles when I over do it). When I crash, the posterior part of my body aches - backs of my legs, my back, even the backs of my arms - it's strange. It's not like if you go for a strenuous hike and your whole leg would ache - just the back of everything. So I can tell when the PEM has abated by if the aching has stopped (learned this from hard experience)

    And I am hypothyroid, take Naturethroid.

    Sorry for the long story! But that's it. Also, I do react very strongly to things that are supposed to be cleansing or detoxing - taurine, chlorella, infrared sauna, even the foot detox thing - all of these wipe me out.

    Best wishes,

  9. IanH

    IanH Active Member

    Mary, Thanks for the summary. I am sharing your notes with a colleague and will come back to you.

    You certainly could try creatine. It is a major requirement of muscular energy and was used in the original trial on treatment of mitochondrial myopathy.
  10. mbofov

    mbofov Active Member

    Thanks so much for looking at that.

    I guess I will try the creatine. I don't know if it will stop the crashing - several things have helped me with energy, but all they have done is give me more energy in-between crashes. I still have the same limits of endurance.

    I do appreciate your help!

  11. IanH

    IanH Active Member

    I know exactly what you mean.
  12. alastairpreid

    alastairpreid New Member

    Hi Mary - you mention you were given / took supplements for the likes of plugged bile duct / inflamed gallbladder / stuck ileocecal valve - what were these supplements?

    Kind regards

  13. mbofov

    mbofov Active Member

    These were all taken care of at different appointments - they occurred over a lengthy period of time.

    The first to be treated was the plugged bile duct and this was in the mid-1990's. I remember being given Collinsonia root by Standard Process and one other supplement, but don't remember what it was.

    For the gallbladder I was given AF Betafood by Standard Process and it was great stuff - I cannot recommend it highly enough. I had to take a sort of high dose for a week or two - I think 9 (small) tablets a day. If you go to the Standard Process website, you can see the ingredients. I also learned that I needed to take hydrochloric acid with meals, particularly those high in protein or with hard to digest food. This took a load off my liver and gallbladder and they are in good shape now. I still take the HCL. Digestive enzymes are good, but they were not enough.

    I ended up having to do a liver detox with help from the chiro. I tested positive for toxins related to chemical solvents from a job back when I was 19. I had been feeling sick and fluish, one glass of wine would make me sick for an entire day. The chiro gave me Parotid by Standard Process and Cholacol or Cholacol II, am not sure which. The liver detox was kind of rough, it lasted 30 days and felt sick and tired much of time, but afterwards my liver was much better and I can tolerate wine now like a normal person (yay!)

    Also have been taking milk thistle ever since for liver support.

    The stuck ileocecal valve was treated by manipulation. First he discovered it by muscle testing (my symptoms were dull pain in lower right side, and feeling sick - turns out s**t was literally backing up into my body, poisoning me because of teh stuck valve). Then he pressed/pulled gently on the right spot, and did it a couple of times till the muscle testing said it was closed. And my symptoms resolved within a couple of hours. This problem recurred several times over a few months - I was under severe stress due to marriage breakup - and I learned to press/pull on the area myself to get it closed and it worked.

    I may have said this above, I can't see my post right now, but if you go to the Standard Process website and call customer service, they'll give you names of practitinerse in your area who use their products, and hence do muscle testing.

    By the way - I had seen doctors for all my symptoms and they were of no help at all, had no idea what was going. One thing about muscle testing is that it can detect problems before they reach an acute stage. If my gallbladder had deteriorated to the point where it was unsalveageable, then I'm sure the doctor would have figured it out and removed it. But we need our gallbladders! I had symptoms (indigestion, burping, feeling full way too long like food was just sitting in my stomach, not being digested) but not enough for the doctor to figure out. But it showed up quite easily with muscle testing and was able to be treated and saved.

  14. IanH

    IanH Active Member

    Have discussed your issue around the place. Some were concerned about your muscle pathology. Have you been tested for the muscle myopathies. Some of these can mask as a fibromyalgia. One of the key tests is elevated creatine kinase. Also the muscle weakness would continue throughout the day perhaps even worsening as the day progresses.

    The following drugs are also associated with muscle myopathies:

    HMG-CoA reductase inhibitors (statins)
    Nicotinic acid
  15. mbofov

    mbofov Active Member

    I don't take any of those drugs. I have not been tested for muscle myopathies. And I don't have fibromyalgia.

    As you know, the post-exertional malaise is the hallmark of CFS - it's delayed onset fatigue which lasts for 2 or 3 days after often rather minimal exertion, although it does not hit full force until about 24 hours later. Sarah Myhill has an explanation for the delayed onset of fatigue and its duration. Somehow the body switches into anaerobic metabolism and uses up all the ATP and it can take days to replenish it.

    It's just no one has an explanation WHY this happens. THis is the mystery of CFS. It's not unique to me - everyone with CFS has this. THis is what the Fatigue Lab at the University of the Pacific at Stockton documented with their exercise stress tests.

    I don't know what my creatine levels are.

    Some people posit that a virus is rseponsible for this, others say toxins. I do have a terrible time with detoxing, can only tolerate very small amounts of things that are supposed to cleanse the body, so I either have a heavy load of toxins or my detox pathways do not work right, or both.

    I believe it's a mitochondrial problem, whatever the source.

    I don't think it's a problem with my muscles per se. Otherwise I think I would get weak during exertion. But the severe fatigue does not hit until 24 hours later.

  16. IanH

    IanH Active Member

    What you describe is the typical symptom of ME as well as FM. The cause is in the immune system. This has been clearly shown by Prof. Alan Light and his team several times. When you exercise or increase muscle activity it triggers a pro-inflammatory response which increases IFN gamma. It is known that IFN gamma (as well as IFN alpha) when raised, cause a drop in mitochondrial membrane potential so much so that the energy production drops severely and ATP synthesis stops. This happens to everyone but with ME the reaction is excessive. Even PPAR activity diminishes so the triglyceride metabolism is reduced. Whether the cells use anaerobic metabolism is unknown and probably not the issue. In addition oxidative stress increases and toxic by-products are not cleared, partly because you already have a glutathione depletion. The recovery time of 24 to 72 hours is for two reasons.
    1. the time it takes for the IFN gamma/alpha to be removed by the immune system and its anti-inflammatory cytokines.
    2. Once the mitochondrial membrane potential has decreased it can take at least 24 hours to correct itelf. In the mean time you are using what ATP you have left. In people with ME it is known that the immune activation is very slow to correct itself.

    The answer seems to be to get rid of the viruses that are causing this immune dysfunction. Everything else we are doing at the moment is just trying to minimise the symptoms, and that includes the methylation and mitochondrial support protocols.

    Exertion is not the only change which initiates this immune response. neurological hyperactivity (or psychological stress), toxin exposure, systemic stress such as a bacterial infection. Basically anything which activates the immune inflammatory process.

    Also, re; detoxing. Most detoxing compounds are themselves toxins or act toxically in high enough concentrations and may initiate an immune response producing the very problems you are trying to eliminate. This is a serious problem for those with MCS.

    Sorry I cannot offer any useful advice.
  17. mbofov

    mbofov Active Member

    Thanks for much for all your help and sharing your knowledge - I really do appreciate it. That's an interesting theory about the immune system being involved. It certainly provides an explanation.

    I still don't think I have MCS, for what it's worth - I don't react to perfumes or new carpet etc.

    But anything that can cause detoxing, I react to in spades, and these are generally considered pretty benign substances I think: taurine, glycine, gelatin, apple cider vinegar, far infrared saune, detox foot bath - all knocked me for a loop.

    So I'm not convinced a virus is at the root of this, although it definitely could be.

    I'm doing a new protocol now called Quantum HCL detox, and only involves a capsule of HCL and something called HCL Activator (has potassium and other mineral salts) - you can google for more info. You would not think this would do much, but it packs a punch. Regular dose is one cap of each 3 times a day, and I can only tolerate 1/2 cap of each every 3 days. It's amazing. It 's supposed to increase methyl groups. Anyways, I think I have a little more stamina now, so am going to continue with this for awhile, after I recover from taking 1 teaspoon of gelatin the night before last, which caused strong detox reaction, especially after taking 1 tablespoon the night before that. I had no idea the gelatin was going to cause detoxing (due to high glycine content), just thought it would help with sleep.

    Best wishes,