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Trying to find out what caused my chronic fatigue

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by bedman, May 25, 2011.

  1. bedman

    bedman

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    I am still trying to find out what causes my chronic fatigue, maybe someone here can help me. Im sorry if this is too long.

    half a year ago i had a respiratory infection with sore throat, coughing, chest pain, hot flashes, itchy eyes, palpitations, air hunger, headaches, a rash on my stomach and stuffed up nose. everytime i felt its getting better and started to leave the house i became more and more tired - until i couldnt leave the bed anymore. i did have no sign of inflammation in my blood then and dont have now.

    I can sit again now, but still everytime i'm trying to walk more than 100 meters i get palpitations, hot flashes, air hunger, arm weakness and then must lie down. the only constant symptom beside my tiredness is a feeling of inflammation of my chest. i did also have severe sudden rip pain (especially when in a horizontal position) and for a week elevated c-reactive protein some time ago, maybe pleuritis. it resolved. an xray of the lung didnt show anything.

    when i have been at a lung doctor he diagnosed athma because i reacted to his stimulator, but i am sceptical to this diagnosis cos there can be lots of reasons for a positive test, i have no other symptoms of asthma and asthma doesnt make you bedridden. i dont wanna use a steroid inhaler when i have possibly infected lungs and also because i have a history of lyme disease where steroids should never be taken. but i dont think this is all the lyme because i have never had respiratory problems due to lyme. i also cant treat the lyme anymore with antibiotics because they all increase my brainfog badly. my thyroid, heart, adrenal glands seems to work fine according to several doctors.

    there are some things i still cant make sense of: nearly everyday i get better at about 8pm. i can walk then without problems and sometimes feel totally normal. how can that be possible? and sometimes when i didnt sleep very much my energy is much better. also sun-light seems to change my symptoms: i have much more energy while sitting in the sun, but when i then try to walk i get even stronger palpitations and weakness than without sunlight. does this make sense? i know some of the latter sounds typical for depression, but on the other hand i dont feel depressed at all, have no mood swings, dont cry and so on.

    any thoughts are appreciated.
     
  2. insearchof

    insearchof Senior Member

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    Hi bedman

    Welcome to the forum.

    Have you tried a number of online med tools to assist with diagnoses? This might help.

    Have you had a test done to see if you have the gramm negative bacterial infection chlamydia pneumoniae? It is present in high numbers of patients with CFS, though I do not know how often it is looked for in CFS patients. It is a real menace! Worth getting a test to see if you have it. I am not sure about how common rash is as a symptom though.

    Found an interesting site where you can read more if you are interested here: http://forums.phoenixrising.me/showthread.php?11928-Trying-to-find-out-what-caused-my-chronic-fatigue&p=181863#post181863
     
  3. Shellbell

    Shellbell Senior Member

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    Hi Bedman, sorry to hear about this. By any chance were you on any antibiotic for your respitory infection, such as a fluoroquinolone, like cipro or levaquin?

    This is how my illness started and I know of many more in the same boat. A lot of your symptoms relate to something like this.

    Just a idea. Hope you figure out how things started.
    Shellbell
     
  4. caledonia

    caledonia

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    Getting better at 8pm is classic for adrenal fatigue. Regular docs don't recognize and can't diagnose this. Check out Dr. Lam's website. Also regular docs miss thyroid problems because they only test TSH not the whole thyroid panel. The whole panel is TSH, free T3, free T4 and thyroid antibodies (AB). Check out stopthethyroidmadness.com (or maybe it's .org).

    Palpitations could be due to magnesium deficiency caused by adrenal fatigue. Try supplementing with magnesium and see if it helps.

    The sun thing maybe sounds like vit. D deficiency?

    The rash makes me think of either an allergic reaction to a med or Lyme.
     
    Tristen likes this.
  5. bedman

    bedman

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    thanks for your help.

    insearchof, yes, chlamydia is indeed one possibility. had lots of tests, every one with a different result (one only igg positive, one only iga slightly elevated, one both slightly positive with infectious disease doctor saying its not high enough for being positive, pcr from throat was negative).
    but since i cannot take antibiotics anymore what difference would it make? i have taken lots of abx that should treat cpn in the past. i have tried amoxicillin recently and got a lot more energy, but had to stop it cos after 3 days i was so dizzy and confused i could barely speak. same happened with all other antibiotics in the last time that would treat cpn. sometimes those reactions lasted after stopping. do you have cpn and treat it?

    there is one thing which makes me think it could be chlamydia pn. i have low ferritin so a md prescribed iron supps. when i took them i got terribly worse. chlamydia uses iron, it is even treated with iron depletion. but viruses use iron as well.

    i think you wanted to post another link, not the one you did? which online diagnosis tool do you use?

    shellbell, no, i did not take any antitiotic when the throat infection started (maybe a mistake). never tried a fluoroquinolone yet, but have heard stories similiar to yours. nevertheless ive tried nitroimidazoles which started my brain fog and some fatigue.
    maybe this was the starter for cfs. how do you think this is possible that an antibiotic starts something like this?

    Caledona, yes, getting better in the evening also made me think about adrenal glands. but adrenals and thyroid levels have been checked by two endocrinologists and according to them there was nothing suspicious. i have also tried supplementing magnesium and vit d. my d levels were low, strangely even after a sunny holiday, but supplementing only made me worse could be a coincidence, but could also mean that my immune system worked harder.

    when i got the rash i did not take any med. but i also had a similar rash with a pharyngitis half a year before.
     
  6. bedman

    bedman

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    any more ideas?

    especially concerning the fact that i always get more energy at about 8pm and also have more energy when i wake up too early (5 or 6 am)?

    my disease must be related to certain times of the day?
     
  7. JPV

    JPV Senior Member

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    Did you take antibiotics?

    Elevated energy in the evenings seems to be very common. I feel the same way sometimes. I think it has something to do with adrenal fatigue, but beyond that, I don't really have any answers.

    I also notice that I sometimes feel better with less sleep. Again, I have no clue why.
     
  8. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    okay, bouncing a few ideas, because I am somewhat like you, but usually functioning pretty good these days:

    at one point, I was having a missed beat every 5 seconds. If I were you, I'd want to distinguish between PVCs and PACs versus actual missed beats, say from heart block of sick sinus. PVCs/PACs are usually benign, but I had real missed beats, according to my auscultation. I estimated it was viral myocarditis, which is very hard to diagnose aside from an autopsy. Short term mortality: ~ 30%, IIRC. Late at night about ready to go to bed back then, sitting in this chair that I'm in right now, I'd wonder then if I'd be dead when I woke up... well, easy to joke about now :) But I really did wonder then, and it gives you a perspective.

    Btw, sometimes Mg does eliminate the arrhythmia in me. I haven't had any for a while, but I do take Mg semi-regularly. The form of Mg is fairly important re absorption, btw.

    hot flashes, never -- air hunger aka SOB, you bet --- muscle weakness? used to have a little but pretty strong now -- feeling in chest? you bet

    that makes me hope I would be the same, but with no insurance I don't know

    I had a really bad cold-induced asthma one night, thought I might die. It is histamine related [disclaimer: I am on a histamine jag and have found reasons that it is involved almost with everything for me. Oops, I forgot: itchy eyes that also burn: You Betcha! but sporadically and never at the beginning

    not that I know of for me, never had the bullet rash -- then again that's in maybe 30% of cases and I also hadn't had any fever in many years, and not at onset. Then again, I was seeing a girl who officially came down with Lyme, she had many meeses at her house and I did stay there right before she was diagnosed - a few months before my illness began. She had a very nice house but was semi-rural with lots of brush and trees and fields etc and is in Lyme country central.

    why is that?

    have you read about Herxheimer reaction?

    I get more energetic at night, but I always was that way. Sometimes at midnight.

    What if you got hold of some prednisone to see if that perks you up at midday? re adrenal fatigue... maybe worth a one day shot, despite your tests

    what if you are different from most of us? then you can't be dragged down by what most of us experience

    (btw, I feel good when I don't eat. Most people in general get cranky. So I generally eat according to nutritional requirements, not for enjoyment. I throw that out there in case somebody might reverberate. I might get some useful feedback. P.S. I've been making subtle word jokes like 'feedback' about 'eating' but nobody gets it :)

    I always hated the sun, and it hated me. But since sickness, I crave it in spring, then it doesn't bother me in summer like it used to.

    doesn't have to equate to sadness, but more to listlessness, I'd say
    but I don't think that you, or I, am depressed -- except sometimes over being sick

    CSFers in UK apparently get hit a lot with being told: it's all in your head. Winging it, I'd say: that's a load of tosh! :)

    Anyway, hopefully that sparks some thoughts. Btw, how is your alcohol tolerance? There is histamine + acetaldehyde that I'm on the trail of.
     
  9. bedman

    bedman

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    since the cfs started only for a few days. before cfs i often took them. i tried to take cephalosporin suprax lately, but had to stop it after only one tiny dose. it increased my neurological symptoms terribly, also asthma-like air hunger, fatigue, twitching, heavy arms.

    why are you asking me about antibiotics, jpv?

    sherlock, congrats that you feel pretty good. how did you do that? What histamine jag
    do you take?

    you aksed about steroids. they should never be taken when you have lyme disease cos it suppresses your immune system and therefore promotes the infection. yes, ive read about herxheimer reactions but they dont last months or years.

    Yes i do have listlessness, but more a motoric kind of it if you know what i mean. its just because my arms are so heavy. if i had enough energy i knew what to do!
     
  10. richvank

    richvank Senior Member

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    Hi, bedman.

    Have you looked into the possibility that you might have a partial methylation cycle block and glutathione depletion? Nearly all PWCs who test for them turn out to have them, and there is a non-drug treatment that gives significant benefit to more than two-thirds of those who try it.

    With regard to the 8 p.m. thing, have you done a 24-hour saliva cortisol test? The conventional endos don't do this, but should. You can get a SabreScience kit without a doctor's order from www.directlabs.com, collect the samples yourself, ship them to the lab in the mailer provided, and receive the results by email. It's very important to see how the cortisol level varies over the 24-hour day, and saliva testing for cortisol has been well-validated.

    Best regards,

    Rich
     
  11. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I agree, the cortisol saliva test is good. I took it and found all of the levels of other transmitters and cortisol. I just need a tiny bit, only part of the prescription. I take it at noon, my day is great now.

    I take many wonderful supplements and I have improved so much with them. I do like my Liposomal Glutathione, Lipo C, ATP pills for under the tongue, cortisol and thyroid. Finding a doctor that can help with all supplements is very important.
     
  12. mellster

    mellster Marco

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    Sorry to hear that - the only thing I would say is do not settle for the asthma diagnosis - it's usually bs for the reasons you mentioned. Try to get better imaging tests done (x-ray is not very detailed) and if nothing shows maybe consider lingering respiratory infections such as CPN or MPN, maybe try NAC and NAD. cheers and good luck!
     
  13. August59

    August59 Daughters High School Graduation

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    I agree with Rich on the 24 hour cortisol test. About 8pm to 1am is my best time of day, then it is of to about 6 hours of fragmented sleep. Then from 8am till 4pm I'm just a zombie dozing off and on. I feel like I want to sleep, but I can't. Then about 4 or 5pm I'll start coming out of it and by 6pm I'm up and about. My 24 hour cortisol had my cortisol was lowest (and slightly out of range) and it came up to it's highest at 4pm and flatlined all the way through the midnight reading and obviously falls through the night, which in general is opposite of normal and I haven't been able get it to move.
    I'm going to try some adrenal extract in the am and phosphatidylserine complex when i can afford it and see if that will help, but I am also cursed by sleep in general cause I have had 4 sleep studies in the last 10 years and 3 of them had "0" mins. of Stage 3 or 4 sleep. And one had me getting 9 mins. of the deep sleep and that was only because I was taking Xyrem. Xyrem cost too much to only be getting 9 mins of deep sleep.
     
    Xandoff likes this.
  14. taniaaust1

    taniaaust1 Senior Member

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    I
    Im going to suggest that it sounds like you have developed Postural Orthostatic Tachycardia Syndrome (POTS).. it can cause all those symptoms when upright (the more upright one is..the more of an orthostatic reaction one can have). It can make my arms feel weak too (it can cause one to feel weaker everywhere) ..along with those other symptoms.

    POTS would make sense in why you would get even stronger palpitations when you get up and try to walk after sitting in the sun then without sunlight.. I would assume you've got warmer when you sit out in the sun, and being warmer is a POTS trigger. ..the warmer you are.. the worst POTS symptoms usually are .. (palpitations, hot flushes, air hunger etc can all be caused by POTS).

    If you sit out in the sun on a cold day.. you may find your symptoms arent as bad as a warm day.

    The good thing if you have got coexisting POTS as well.. is that part of the ME can be often quite treatable so those symptoms could be improved if the right treatments for the person is done (depending on the kind of POTS one has etc).

    50% of POTS cases are said to be triggered by some kind of virus...
     
  15. melike

    melike

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    Hi Bedman,
    I have read your posts in this forum and found that your story is very similar to what my sister has been experiencing for the last 15+ years:(
    She has been having exact same symptoms as you do.
    Your recent activity seems around September 2012 so I hope you check the messages here.
    We can exchange emails if you are interested in chatting.

    Waiting for your answer
    Mel​
     
  16. melike

    melike

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    My sister has severe CFS and severe medication intolerance

    We have been searching the web for people who experienced similar symptoms. Her clinical findings and the list of drugs she is sensitive to is almost same as bedman's here. She can only tolerate ceftriaxone-rocephin as antibiotic.

    Her CFS started about 15 years ago after she was diagnosed with Tuberculosis (she was a Pediatrician at the time). She had extreme reaction to the medication she used to treat tubeculosis (she used to take 4 different drugs). Her tuberculosis healed but she never recovered afterwards. FYI she was very strong before this, never had a medical issue.
    In the following years her condition got worse and her neurological symptoms became permanent. She tried to take different drugs over time but with medication the symptoms get even worse and unbearable.
    Most irritating, unbearable symptoms are extreme agitation, restlessness and fatigue. She also has headaches, muscle twitching and gut symptoms which also get worse by medication.

    Mel
     

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