Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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I beg someone to help me

Discussion in 'General Symptoms' started by davidfibdou, Aug 9, 2013.

  1. davidfibdou


    I've pretty much exhausted everything so I am asking anyone if they can listen to my story and see if I missed anything -- I am NOT a typical CFS case or so my doc says and I explain why in my symptoms paragraph below -- that's why im so scared and lost. I cant keep living like this and not at least head in the right direction. I wont bore you with emotions just facts. If you know anything or can suggest anything I'd be so grateful to hear it.

    Age: 29 Male

    My symptoms

    - Extreme fatigue everyday - crash at 3-5pm, take a nap ,wake up so tired and complete my day
    - Memory issues
    - Since sick I only have daily temp of up to 96 degrees, I always used to be 98.3

    Don't Have
    - Never sore throats ever (not even once or even a tingle)
    - No pain ever
    - No swollen lymph nodes.
    - No post extertional malaise (but I don't even have the energy to do exercise anyway).
    - No fevers ever
    - Flu like symptoms

    My quick story

    1. Under a lot of stress (and fearful person), seemed like one day I had to go sleep in the mid afternoon from exhaustion, that never went away until today..... and its unreal the daily exhaustion just UNREAL!
    2. Brain MRI - Nothing wrong
    3. Sent me to a psychiatrist and took Prozac, made me even more tired, didn't help.
    4. I went to a sleep medicine doctor thinking it was narcolepsy... tested for a sleep study and narcolepsy, doc was not convinced i didn't have narcolepsy and I never fall asleep but he mentioned words Ill never forgot "alpha wave intrusion, people with fibromylaga get it"...
    5. Went to my first CFS doctor, ran every test known to man, all came back OK except my NK natural killer cells were low, she is the one who said im not a classic case.
    6. Went to witch doctors who gave me every vitamin in the world, coq10, d-ribose, you name it, nothing helped.
    7. Got tested for Lyme, came back negative (lived in Miami for the last 8 years)
    8. Went to dentist said I didn't have amalgams in my teeth (but I am curious about "cavitations" that I want to explore more).
    9. This month I went to another doctor and she measured my daily cortisol 4 times, this was the first test after the NK (natural killer) test that came back abnormal. See image for my results. My morning and noon cortisol was SKY high (46 and 19) and then dropped to normal in the afternoon and night. Adrenal failure? She put me on adrenal calming stuff for the morning and the noon, been on it for 2 weeks nothing changed, im even more tired then before. She explained that my body was running a marathon in the mornings and obviously shuts down in the afternoon from being tired, weird because I cant even run 10 feet. My DHEA was fine whatever that means.

    If I had the sore throats, the flu like symptoms Id say ok CFS.. and I know CFS varies in everyone but absolutely nothing I have done with vitamins, voodoo from garbage docotors, anti-depresants, or even praying affects my symptoms. Nothing I have done short term or long term as made me feel better, not even a little.

    This is where I am at right now, I cant work, cant find a wife, I'm in the dumps... does anyone know anything I missed?

    Thank you and much love to everyone here :)

    Firestormm, taniaaust1 and vli like this.
  2. PDXhausted

    PDXhausted Senior Member

    NW US
    Have you been evaluated for Cushing's or a functional adrenal tumor? And have you had all the thyroid tests done?
    WillowJ likes this.
  3. WillowJ

    WillowJ คภภเє ɠรค๓թєl

    WA, USA
    hi davidfibdou, welcome to the forum. sorry you are having a rough time; we certainly understand that.

    have you had a sleep study and vitamin D testing (both D2 and D3)? I would start with asking for referral to endocrinology, sleep medicine, or immunology, whichever you think most likely.
    sorry, the study is not cited in the article

    Other conditions besides ME/CFS that can cause low NK cell function include nutrient deficiencies (if you suspect this, a referral to gastroenterology might be in order) as well as other immune disorders. Smoking, stress, and depression have also been reported to cause this.
    maryb likes this.
  4. Valentijn

    Valentijn Senior Member

    Most ME patients don't have fevers - low temp seems to be the norm. Also my sore throat and lymph node problems didn't really hit until I'd been sick for over a year. The lack of pain is a bit odd though. Not even aches or anything? And how do you feel when you "crash" in the afternoon and need a nap?

    It might worthwhile to take a week off and see how you're feeling. Basically just plan on doing the bare essentials (eating, hygiene), and resting. See if you feel different as a result.

    Another thing you could try is laying down periodically during the day, BEFORE you feel the intense need to do so. Some people have "simple" orthostatic intolerance (OI) problems, which can be easy to confuse with ME/CFS, since we get OI too. But OI can usually be treated.

    If laying down helps, and it seems like it might be OI, you can check your heart rate to see if it's POTS (postural orthostatic tachycardia syndrome) which would cause a jump of 30 or more in heart rate when standing. NMH (neurally mediated hypotension) can be detected via a blood pressure monitor, and usually hits after standing or sitting upright for a while, resulting in low blood pressure or narrow pulse pressure (difference between systolic and diastolic readings).
    dannybex likes this.
  5. Plum

    Plum Senior Member

    As I was reading your post the first thing that came to mind is adrenal issues. This book is a good starting point: fatigue

    After him look into the free stuff on this site:

    I have been dealing with sever adrenal fatigue for 3 years. I did everything in the book. Nothing helped. I have sincerealised that my body is too weak to cope with the levels of supplementation suggested. I would advise going slowly and one supplement / med at a time with healing from these things. Diet can make a big difference.

    Low temp = thyroid problems. You need to get a thyroid panel done. Hormones too. Saliva for hormones is better than bloods.

    Other things to think about are anaemia and B12. A normal iron level can often mask B12 deficiency.

    Not everyone with ME gets sore throats and flu like symptoms - some of us got this when we got really ill the first time and haven't had it since. Some ME people get colds all the time others never get a single one.

    If I were you I would be relying on Dr's to know how to fix you - in my experience they don't know what they're doing! Learn as much as you can yourself and then ask a Dr or alternative prac for the exact thing that you want to try. I don't believe in leaving it up to them.
    maryb likes this.
  6. maryb

    maryb iherb code TAK122


    I didn't have sore throats, pain for the first year - it was about 18months before my knee went peculiar - that was the first sign of FM - but not all ME patients get FM anyway. Do you get PEM? think this is the key to symptoms.
    I was like you - very very tired for a few years before getting ME, worked and then collapsed in the chair and to bed. maintained a hobby but needed 3 days before and after to recover.

    good advice above - endo first - maybe something simpler to treat (well in relation to ME) like thyroid, hypoglicemia(sp)
    good luck.

    maybe look at diet too - very important.
  7. vli


    Nancy Klimas if you're in Miami?
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    I would look at hormones first, adrenal hormones dhea and cortisol and should test in the upper third of the normal range for morning blood work. A salive 4 times a day cortisol test can see if the rythm is out of whack as it should be high when u wake up and slowly decline so u can sleep properly. Then get total and free testosterone checked which should also be in the upper third of the range. Estrodiol which is also called E2 can be high in men and cause issues and should be in the middle to lower third of the range.

    This is an interesting link for anyone who wants to understand adrenal dysfunction in simple terms and focuses on pregnenolone

    I would say with a low nk function its possible u have ongoing infection, maybe not obvious or secondary to some type of adrenal fatigue /dysfunction. This is a good link for infectious causes etc

    Just read over your post again and noticed u said your cortisol is high, so possibly still in the early stages of adrenal fatigue. Rest is important, no pushing yourself, phosphatidyleserine can help with high cortisol and also adaptogens that are calming such as withania, some other good herbals are relora, theanine. If in need of something stronger i would consider a low dose sedating type tricyclic antidepressant like doxepine or amitriptyline as they can help lower high cortisol and encourage proper resting which is important. Rest is needed to recuperate and good sleep is essential, no one gets better without adequate sleep. While cortisol is high i would stay away from hydrocortisone and anything stimulating for now.

    I hope u find something useful in what i have posted.
    August59 and Plum like this.
  9. vamah

    vamah Senior Member

    Washington , DC area
    You mentioned being tested for lyme, but have you been tested for other infectious diseases? I would suggest you get tested for herpes viruses: ebv, hhv6 and cmv. I also don't know what kind of lyme testing you had done, but the standard tests have a lot of false negatives.
    taniaaust1, heapsreal and vli like this.
  10. Plum

    Plum Senior Member

    People seem to often ignore STD's as well - always a good thing to get ruled out.
  11. Xandoff

    Xandoff Michael

    Northern Vermont

    I have had ME CFS for ten years now. As a layman I would call this illness a spectrum disorder. Depending on your genes, age and genetics I believe this illness manifests itself differently in any given person. Your low Natural Killer Cells count test is alarming to me if your number are low. That means something is wrong. It took me five years to get a correct diagnosis for this illness without a cure. I mostly work on staying "IN" my energy envelope and managing my symptoms, un-refreshing sleep, fatigue, wired tired all the time, crashes & pain etc.

    Do all the due diligence you can to learn about this disease. There is no one size fits all, everybody here is different. Your low count on your natural Killer cells could be significant. They should not be low. How this manifests in your "system" will be unique to you.

    This is a very frustrating journey. We all here feel left out in the cold by the medical establishment. Push to find a real ME Doctor about your low NK function.

    I wish you all the best David!

    taniaaust1, vli and Plum like this.
  12. Snowdrop

    Snowdrop Rebel without a biscuit

    Hello Matthew

    Welcome to the forum. I’m sorry to hear that you are scared and suffering and unsure why.

    I don’t have any advise with regards to diagnostic tests for you as I don’t have the money to spend pursuing that but I can tell you there is a lot of useful knowledge here and many people willing to share it. You’re definitely not alone.

    If you do rule out other conditions there is a sort of bright side for you from where I stand. You are young and seeking help early and there are increasingly more people who are now trying to understand ME/CFS and find treatments.

    I would suggest heeding the advice to rest even when you’re not yet feeling tired. It can be hard to do but simple and often effective in preventing worse symptoms~the ones you’re not yet experiencing. Valentijn mentioned OI, increasing your hydration through-out the day can also be simple and helpful.
    Good luck with your search for answers.
  13. Sushi

    Sushi Moderation Resource Albuquerque


    I don't think Drs. Klimas/Rey are taking new appointments now. But their patients could say for sure.

    Best wishes,
  14. chronix


    Some good replies here, can't add much more except the following (I'm going from the assumption that you may have CFS/ME):

    - Expect your cortisol profile to change as the disease progresses. Cortisol is usually elevated early on in the disease, but hypocortisolism eventually manifests as the default state in most long term PWME. Visit an endo periodically if you can, and get your cortisol levels monitored. You don't want to be on cortisol suppressing supplements if your pattern changes from hyper- to hypocortisolism. Also get the ACTH stress-test to rule out Addison's.

    - Search for Richvank's Simplified Methylation Protocol - it's posted on this forum. It centres around high-dose Vit B12 and methylfolate. It sounds like you've been through a bunch of supps already but this one is proven to at least help a portion of PWME. Even if you don't feel any benefit, it's a good idea to supplement these vitamins to prevent any deficiencies and resultant symptoms which may appear down the line. The supplements are affordable and you can gradually introduce them over a period of time.

    - Get tested for viral infections already mentioned in another post, but also bacterial infections usually found in CFS/ME. These include: mycoplasma, chlamydophila pneumoniae, Q-fever, rickettsia, H. Pylori. It may be a shot in the dark and it doesn't sound like you had any of these bacterial infections at onset, but these infections are possibly opportunistic in this disease, and therefor may appear later on. So like my vit B12 recommendations above, it's better to be aware of these things from the beginning, rather than trying to remedy it later when it will be much more difficult. Prevention would be the best option, but I doubt you'd find a doctor willing to prescribe something like long-term doxy/antivirals if you test negative. This could be dangerous anyway. Find a good CFS doc and get tested every three or six months if it's possible. Ever had problems with recurring respiratory tract infections?

    - Consider aggressive rest treatment. I think everyone here will agree that the longer you push yourself in the beginning the more damage is done and the worse the eventual situation you'll find yourself in. Do the minimum you must to survive, and rest for the remainder, which should be the majority of the time. Is there someone that you can call upon to help you, whether that is financially, emotionally, physically or even just with things around the house or with grocery/shopping, doctor visits etc. ? This can be of great assistance.

    - If you feel "wired but tired", a benzo might help but be careful as it can be difficult to come off of it.

    - Follow a healthy diet. Get checked out for allergies as they may appear/worsen now.

    Good luck. Many of us have been in the same position you are now in, and it's probably the most difficult time in this illness, not ito symptoms but because of the shock and confusion that plays havoc on your mind and spirit.
  15. vli


    Oh, sorry i didn't know.
  16. jeffrez

    jeffrez Senior Member

    You need to get those hormones balanced, and your thyroid checked. Adaptogens like withania might work (can elevate thyroid hormones, so be careful), or Seriphos could blunt your HPAA and lower your morning cortisol.

    Alpha wave intrusion means you have too much low-frequency wave activity when you shouldn't. Typically that can cause spaciness, drowsiness, attentional/memory problems, etc. You can address that with EEG neurofeedback, which might fix your HPAA issues, too. The two are probably related, in fact.
    dannybex likes this.
  17. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    I personally think it is quite possible that you do have ME. There are quite a few reasons why Im thinking this.

    1/ You only developed the illness last year. I personally think it is quite possible seeing you havent had it long, that it hasnt set in properly in your case yet. Maybe your body is still fighting it some?? and hence as yet you havent developed all the normal symptoms yet when the body looses the ME battle one could say.

    The first year I had my ME, thou mine was with the classical ME viral symptoms which hit with mental excertion eg exams. My ME wasnt usual for the first year eg no physical post exertional symptoms the first year and in my case I kept recovering at first after week of like a viral manifestion (I'd have week long crashes with being completely well inbetween). So on the grounds of you being at the start of the illness, I wouldnt rule out ME.

    2/ I wonder if you are actually getting postexertional symptoms eg the exhaustion but havent as yet due to being fairly new to this illness, realise that you are in fact getting these.

    "Extreme fatigue everyday - crash at 3-5pm, take a nap ,wake up so tired and complete my day".

    By any chance are you doing things before that 3-5pm crash. That could be a daily post exertional crash pattern going on. Do you still crash at that time of the day if you did nothing at all that day? Does this pattern still happen when you dont do your normal routine and instead rest?

    I suggest the same as Valentijen did and take a whole week break from things to see if your exhaustion improves any at all. If it does, this could show that exertion and activity is impacting you after all.

    3/ Even thou you dont have many "symptoms" you are showing ME abnormalities
    1. lower body temp (which often happens in ME when someone is overdoing things),
    2. " "alpha wave intrusion" That is one of the very common ME abnormalities
    3. "my NK natural killer cells were low" That isnt unusual in ME.
    4. Your cortisol problems, many at the start of ME seem to have high cortisol (with time for many it then ends up going low). (in that there is a page on the various test abnormalities which can be often found in ME).

    So you have 4 abnormalities which appear in showing up on tests, on those grounds, it makes me think you could well have minor ME or ME which will further develop with more clearer ME symptoms in time.. (I wouldnt be surprised if you got tested for other ME abnormalities that more may well show up). eg Have you tried a Rombergs test, a tandem stance test or had a tilt table test? (those first two you can look up online and try at home, testing for OI issues such as POTS can also be done at home to thou tilt table test if you can get one would be better). Anyway.. I suggest to try those tests to see if you have more abnormalities then you were aware of.

    "She put me on adrenal calming stuff for the morning and the noon, "

    Are you refering to an adrenal adaptagen of some kind? Many of us take adrenal adaptagens for our adrenal issues.

    I think you need to take care of how much you are doing as I think you "may be" in the beginning stages of ME and due to it not being bad yet, you may have far better chance of making a recovery.
    WillowJ likes this.
  18. Jarod

    Jarod Senior Member

    planet earth
    Hey Matthew.

    You may have post exertional malaise, but not know it because you are never getting rested to begin with. That was kind of my experince. Just crashed all the time and not even realizing it.

    Usually people find a good CFS doc who will test for all kinds of infections. ONce you find something you can try to treat it with various supplements and meds while hopefully building your immune health good enough to maintain.

    Careful with your stomach and liver, it is often the key to the disease and treatment. A damaged gut makes recovery extremely tough.
    Plum likes this.
  19. davidfibdou


    OMG thank you all I have read everyone's post and replied below :)

    I haven’t been evaluated for Cushing’s or functional adrenal tumor, should I do that? What kind of doctor?

    I did the sleep study and all came back ok except for the minor alpha wave intrustion, I did do vitamin D and I was super deficient, like a 22 if that means anything.
    I don’t think I have OI but I cant say for sure. No symptoms of it that’s for sure.

    Did all the thyroids
    Looking into b12 deficient although all came back normal whenever I tested for it, how does a normal iron level can often mask B12 deficiency.

    Good endo?
    Checked for all STDS clear

    I called Climas clinic, I think she said the wait is 1 year or more.

    did you see my cortisol results? I did the 4 spits tests. Now im worried these cortisol levels will fluctuate and im gonna be taking supplements to lower cortisol at the wrong time. Should I look into esetrodiol?
    I think I want to try the doxepin or amitriplin! Thoughts?

    so I don’t have ebv, cmv, but do have hhv6. Yeah lyme test suck but I was tested with an Aliza and all my doctors say I don’t have lyme symptoms. I would love to take a advanced test that’s more accurate just to be sure..any ideas?

    Regarding the NK my doctor says my immune system is low that’s it, what else is there to find out about it?

    Thank you for the kind words and I feel so welcome here

    SushKlimas is so hard to get in touch with

    I am going to get tested for Addison thank you and the bacterial infections. I know for sure I had h. pylori but I took 2 weeks of antibiotics and omprozal for that. Never tested again to make sure I got rid of it.

    What kind of doctor do I need to go to for that?
    Thank god I have a great family support and am able to rest.
    how do I do that?

    your worfds are insightful and scary but thank you!
    I haven’t had the rombergs test but I wouldn’t even know where to get it.
    I definitely don’t have OI
    Yeah AdrenCalm is the adaptgen to lower my high cortisol in the morning.. now im worried my cortisol is no just high in the morning but at different times and changes, im taking the adrenaCalm in the mornings only.

    JarodThanks jarod for the info, im trying so hard!
  20. Xandoff

    Xandoff Michael

    Northern Vermont

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