Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Most common tests abnormalities in CFS?

Discussion in 'General ME/CFS Discussion' started by notmyself, Feb 9, 2017.

  1. notmyself

    notmyself Senior Member

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    Hi everyone,

    One month ago i posted here looking for answers..since than i deteriorate badly,i cannot train anymore and i think i experienced the so called Pem..I just reach the maximum of my frustration..i make so many tests and absolutelly no abnormalities ..all my hormones are fine ,even cortisol..Blood all good. vitamins all good.. inflamatory markers:CRP 0.700.ESR 3.Fibronogen in the middle of the normal range..so definatelly no inflamation here..Brain MRI : No brain leisure, no inflamation,Heart good,Lungs no problem, liver perfect,creatine kinnase good -good,LDH good..Is like i am the most healthy person in the world but yet i feel like i have 80 years old..my bones,my muscle hurts and i am desperatly tired..it's ridiculous..What other test should i do ??? IT must be a cause why my body feels so bad..I don't belive in a disease that doesent show any test abnormalities: the muscle pain is caused my something,the fatigue is caused by something ..and all the symtoms are cause by something ..they are not caused by CFS..
     
    lauluce likes this.
  2. halcyon

    halcyon Senior Member

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    There's a thread around here somewhere listing all the abnormal tests people have. To date I've had persistent red blood cell abnormalities (high RBC count, high hemoglobin, high hematocrit, high MCV/MCH), intermittent leukocytosis (usually lymphs or monocytes), persistent eosinophilia, low CD4:CD8 ratio, intermittent hypophosphatemia, low testosterone, elevated prolactin, high IgG4, low 25(OH)D, elevated nagalase, persistently elevated echovirus antibody titers, and abnormal tilt table and QSART tests.
     
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  3. Snowdrop

    Snowdrop Rebel without a biscuit

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    How can you not believe in a disease with no test abnormalities?

    At one time there were no tests to diagnose ever so many diseases. It's possible that a disease can be causing abnormalities that current technology cannot pinpoint. As technology develops from microscope to X-ray to PET scan and so much else more is uncovered as to what is happening in the body.
     
  4. notmyself

    notmyself Senior Member

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    yes but the technology advanced a lot..from what i see and read almost every case is triggerd by a virus or bacteria .and they wreack havoc on the body,meaning they do something visible and detactable..
     
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  5. Dechi

    Dechi Senior Member

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    Check on this website how Dr Hyde diagnoses ME. He says two things are nedded : 1- all ME sufferers have hypoperfusion in the brain, this is detectable via SPECT scan with HMPAO and read with a special software. I had it done and it showed medium to severe hypoperfusion just about everywhere. 2) you need a gastric biopsy to get proof of enterovirus of some type.

    Www.nightingale.ca
     
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  6. notmyself

    notmyself Senior Member

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    thanks for answering..hypoperfusion does not imply orthostatic intolerance or blood presure problems,heart beats?? ..because all of this are fine with me..i have a heart beat of 60 at rest ..and 75 standing..
     
  7. Dechi

    Dechi Senior Member

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    @notmyself I have read that 78% of ME patients have OI (orthostatic intolerance) which POTS is a form of. I am among the 22%. I don't have POTS or any form of OI. My resting heart rate is 48 and it goes up by 27 beats when I get up. I just did a prolonged table tilt test and I was fine. I have low to normal blood pressure. The area in the brain which controls these functions is not affected, in my case. It showed on the SPECT scan.

    So to make a short answer, no. It doesn't imply having POTs or problematic blood pressure.
     
  8. notmyself

    notmyself Senior Member

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    OK..i'm gonna do the spect scan :) thanks
     
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  9. TigerLilea

    TigerLilea Senior Member

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    Vancouver, British Columbia
    Medical science still has a very long way to go. And where CFS/ME is concerned, they know very little about it.
     
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  10. notmyself

    notmyself Senior Member

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    well i need to find some answers and treatment if not i'm gonna end this..
     
  11. Snowdrop

    Snowdrop Rebel without a biscuit

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  12. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    excellently put
     
  13. TigerLilea

    TigerLilea Senior Member

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    We all want some answers and treatment. I've been waiting for 26 years and counting.
     
  14. Dechi

    Dechi Senior Member

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    @notmyself Be careful who you choose. You need a special dye, HMPAO and a very specific software. You need to find someone who knows what they are doing and who does it specifically for ME.
     
  15. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    "CFS" is a misleading name, since it is actually a severe, cripling and extremely complex disease. Just by reading this forum, you will realise that everywhere in the human body where researchers have looked, they have found anomalies in people with "CFS". Contrary to what common medical test such as the ones you talked about earlier suggest, the body of people with "CFS" are catastrophically malfunctioning on a global, systemic scale. Everything, including but not limited to the immune, vascular, nervous, endocrine systems seems to be altered. The metabolism is altered, there's evidence for the involvement of all sort of pathogens, even some arising from ancient dna embedded in our own genome (endogenous retroviruses). The gut microbiome, that is, the population of bacteria and other microorganisms living in our guts is also altered. And so the list of anomalies goes on and on and on... I really don't think at this point that there exists any other disease where so many things are wrong in the body of those who suffer it, so don't even think for a minute that having normal results for regular tests means you are healthy. You are very, very ill! you must fight this disease with your every resource, and you'll find there's much that you can do, and if wait enough there will soon be much more to be done about it, help its on its way, trust me! sorry for my bad english, I'm from Argentina, Good luck and never give up!
     
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  16. notmyself

    notmyself Senior Member

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    Not Giving up is not a choice..i am 25 , i will not be able to make any money,how i will sustain myself? if this would have happen later in life when i will have a family i would not give up.but like this is not worth it..i need these tests to somehow prove to my mother and sister that i am not crazy..i don't want to be remember as a crazy person..because i am not
     
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  17. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    In my opinion, the best test you can take to demonstrate your illness is organic in nature, is a repeated CPET ( Cardiopulmonary Exercise Testing explained).
    WARNING: CPET CAN BE DANGEROUS AND WORSEN YOUR ILLNESS, SEE POST BY @Dechi BELOW
    An important study found that if this exercise test, which measures basically the ability of the body to perform work, is done TWO times between a 24 hs interval, the first test results would be normal while the second one would show cardio respiratory impairment, thus providing an objetive measurement of PEM (post exertional malaise, the defining symptom in CFS/ME). I took this test, and it showed exactly what was expected, first result was normal, the second, 24hs later, was abnormal. I think this would be the best you could do
    This is an article explaining this topic in a simple way:
    http://phoenixrising.me/archives/17902
    An this, is the actual paper from the study, which you can present to your doctor in order to ask for the test:
    https://academic.oup.com/ptj/articl...dity-of-Metabolic-and-Workload?searchresult=1
    https://www.ncbi.nlm.nih.gov/pubmed/23813081
     
    Last edited: Feb 10, 2017
  18. Dechi

    Dechi Senior Member

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    Two day CPET is dangereous. Make sure you read other's stories about it. Some people take months to recover, some never do. I did a stress echo in december, lasted 8 minutes and I crashed for 12 days... I can't imagine what this test would do to me.

    It's usually used as a last resort when you need your insurance to pay.
     
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  19. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    you're right! I forgot about it! I'll edit my post. I took it and I was able to recover, but that's just my case
     
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