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a PEM question

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Aerose91, Feb 23, 2014.

  1. Aerose91

    Aerose91 Senior Member

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    Im not sure how to phrase this so ill just try to explain.

    If i overexert, which some days may be walking up the stairs, i will be fine the rest of that day. Then, an hour or so after i fall asleep i will get rocked awake by adrenaline so bad that i sometimes feel as though im going into a seizure. Its like i get struck by lightening. This will last 4-5 hours then calm down slightly but it will take away my whole nights sleep.

    This then continues for upwards of a week and only when i finally get a few hours of sleep in a night the fatigue will come on.

    Also, my blood sugar and diet is perfect so i know its not just hypoglycemia.

    Every single time i overexert it comes on as a massive adrenaline dump and only when im sleeping. This cycle may take weeks to calm down, its absolute misery. Anyone else get this?
  2. Martial

    Martial Senior Member

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    Thats not post exertional fatigue but something else, I get the same exact thing but only when I am either going to sleep or while sleeping.. I have lyme though... I am still wondering if you have lyme and not M.E. though, everything you mentioned before and now all seems very closely similar to myself..

    I think it is in relation to the lack of blood flow in the brain or the inflammation.. It is a kind of hypoxia.


    Especially the brain inflammation and stuff there, you should find out soon if possible because you can treat it and recover.. I also have many supplements and things you can do to heal the brain, get more blood flow in there and the like...

    With my case of lyme I can have crash days or good days but its not exercise that makes much of a difference, feels more related to herxing and ammonia release.

    PM me if interested.
  3. Aerose91

    Aerose91 Senior Member

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    Man i hope its lyme or bartonella etc... i have the exact same thing- it only happens when im falling asleep or sleeping. let me ask you tho- have you had any setbacks due to overexertion? When i have these episodes it always leaves me with some new deficit, some more intense than others- be it muscle weakness, nausea, lightheadedness, or by far the worst; more hypoperfusion in my brain. i didnt have full on dementia or psychosis in the beginning of this but i do now solely because of disease progression due to energy expenditure, none of it ever having healed. Are these features also descriptive of lyme and its co-infections?
  4. Martial

    Martial Senior Member

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    Yes dude! Lol sounds just like me! How bad is the physical fatigue? sometimes I could literally sleep for days at a time, lyme can really mess you up! I don't think anyone with M.E. ever mentions brain issues as bad as ours as well.. Usually with M.E. most tests like MRI and the like come back with no complications..

    Running a PET or Spect Scan on us will definitely show some abnormalities though...

    I already Pm'ed you some supplement info that will help reverse damage, and protect your cells and brain!

    The hypo perfusion doesn't get worse, the issue is from ammonia being released from the bacteria..

    The damage is not permenant though, the brain normalizes once the infection is fully eradicated..

    I have absolutely no feelings right now either complete anahondia and hallucinations still happening, all kinds of weird stuff..

    Anyways I would get on treatment stat! You need to clear that infection out!

    The supplements I posted to you in PM should help to protect against oxidative stress and to clear the ammonia with abx treatment or herbal abx with your doctor, or if you choose to purchase some herbal abx on your own...

    I would recommend Samento or cats claw, alongside Banderol, And wild Oil of Oregeno, there are many other things you could use as well...

    You could always grab the herbs they use in the Cowden protocol as well, many other options out there as well!


    This site also specializes in Lyme and has some good treatments.

    http://hansacenter.com/treatment-philosophy/
  5. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    I am guessing a cortisol spike is causing the waking, which means its probable the hypothalamus is out of whack, not an atypical issue. Some of the Light's research also looked at changes in adrenaline receptors, that might be worth looking up.

    PEM is an exacerbation of existing symptoms, not just fatigue or lack of energy. So its hard to really rule PEM out. If the underlying problem is one that is typical for you, and it worsens post exercise, that might still be PEM. We still don't really know what PEM is anyway, so we cannot be sure one way or the other.
    SOC likes this.
  6. Aerose91

    Aerose91 Senior Member

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    Yeah dude ive never heard if anyone with this disease having brain issues as bad as this, not even close. I had a SPECT scan and it showed massive hypoperfusion, the doc said its the worst hes ever seen

    To be honest bro, i didnt have any fatigue when this started, just major problems with my brain and exercise intolerance. However, now because of so many major setbacks due to overexertion its like a whole different illness- much much worse brain function and now i have pretty bad fatigue on top of many other new symptoms. However the brain is the worst part- i cant even begin to explain how far i am from reality and how dissociated i am.

    Does PEM exhaserbate my existing symptoms? thats hard to say because i get so revved up with adrenaline dumps for days or weeks afterward. When all that wears off you could say everything is worse but during the period the PEM hits its like my finger is stuck in a light socket for a week straight.
    soxfan likes this.
  7. Martial

    Martial Senior Member

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    HPA axis dyregulation is just as common in lyme, the brain stuff you got to just not mind and treat as symptoms while you clear the infection.. Just check out what I sent you and get on something soon to clear it out!

    Also in our case regular exercise that is not over exertive is important for recovery...
  8. Aerose91

    Aerose91 Senior Member

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    I just sent you a PM man

    Zero exercise for me though, most days walking down the stairs is overexertion for me and causes major adrenaline dumps. The other night i was on my hands and knees and the weight of my body on my arms was overexertion and set off a reaction.

    If i have to see my doctor or travel more than a block from the car i need a wheelchair so it doesnt cause me permenant harm.

    Mind you before i got this i was a personal trainer and competative MMA fighter.
    Last edited: Feb 24, 2014
  9. Martial

    Martial Senior Member

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    A reaction of anxiety or other things that could be harmful? if it is just an emotional response then it may be good to accept it and work through it...

    Most doctors recommend exercise to help with recovery and to clear the bacteria.. here is an article on it..

    http://www.truthaboutlymedisease.com/phpBB3/viewtopic.php?f=10&t=1930


    Did your doctor say that exercise would cause more damage? because it would seem to be the opposite, the release of blood flow would help to oxygenize and restore the brain and heat up the body enough to clear infective agents... Of course talk to your doctor before starting an exercise program but definitely look into it.. If possible movement will always yield better results then being bed ridden and de conditioned.
  10. Aerose91

    Aerose91 Senior Member

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    Nah definitely not emotional, very, very physical. My doctor wants me as sedentary as possible. The whole reason im as bad as i am right now is solely because of energy expenditure. if i had kept myself bed ridden from the very beginning i wouldnt be even a quarter as bad as i am now.
  11. Martial

    Martial Senior Member

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    Oh, dang sounds complicated.. Well I hope you find what works for you soon enough man! I think treating the infection if it is lyme will give best results, if that is the source of your issues.

    Did he ever say specifically why to be as sedentary as possible? to prevent brain issues? crashes. etc?

    If you don't have M.E. then I would say that crashes in that sense shouldn't be an issue. Though I don't know if he is having you bed ridden for the brain stuff or not..

    Either way I am sure all of this stuff will resolve and you will be well on your way!
  12. Aerose91

    Aerose91 Senior Member

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    Being sedentary is just a precaution against PEM since doing even the most basic things causes me severe disease progression that, as of this point, hasnt recovered

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