The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Looking for help in interpreting lab results

Discussion in 'General ME/CFS Discussion' started by enna, Jan 15, 2017.

  1. enna


    Hy everyone!

    I’ve been a reader in the forum for many years, but this is the first time I write my own message. English is not my native language so excuse any mistakes. I’m a 30 year female and I’ve probably had ME since I was 15 with a strongly progressive course. I’ve tried to live on my life but for many years I’m being more and more bedridden. Bevor it all started I had multiple root canal infections, long EBV infection, mumps and a very strong HSV outbreak all within two or three years.

    Following are my worst symptoms: I have a very severe fatigue, even when I only lie in my bed for days or even weeks and crushes that last for days after only slight exertion, I have sore muscles, my cognition decreases, my vision blurs more and more and often I have double visions. I have an idiopathic hypothyreosis. What differs strongly from what I’ve read about most ME-patients is that I have hypertension and pulse around 100 even when I only lie in my bed and worse when I move. I often have migraine and I have many infections, especially mastits, belt rose and bursitis. Also I have strong temperature intolerance to cold and warm. I always have excessive thirst, so I drink up to 5 litres and still always have a dry throat and mouth.

    I live in Switzerland where ME is treated as a matter of psychology which can be healed by simple lifestyle choices of the patients, so I’m without treatment or even access to health care at all. When I see a doctor, he won’t take me serious any after the term ME or CFS falls, even if I went to see him only because a normal inflammation. He will give me some salve, but not without telling me to get up instead of burden the health care system. I’ve not given up yet finding a doctor who takes my symptoms serious, but I haven’t had any success in all the years.

    Four years ago I made the tests at the organix labs in the US, but I couldn’t understand all the results and tried the suggested supplements but without any success. I’ve tried to do some research myself and my concentration decreases more and more. I’m not even sure that I have ME, all I know is that my body gets worse and worse and I don’t know where it is going to end. I’m open for alternative diagnosis and I’m desperate for any treatment or symptom reduction, but I’m more and more unable to do research. I wanted to post my results for comparison and interpretation. Is there a special thread or a specific reason not to post lab results (anonymously of course)?
    Joh likes this.
  2. undiagnosed

    undiagnosed Senior Member

    United States
    Hey @enna, you can probably just post results to this thread as you've already started it. One of the moderators may move it to the Diagnostic Guidelines and Laboratory Testing section.

    I've also been working on a project called p2pdx to make easier to share such data in the future. The project isn't quite ready yet but just thought I'd mention it so you know about it.
    Joh likes this.
  3. Joh

    Joh Inactivist

    Hi enna, welcome!

    I'm sure you'll get some valuable information here! I've read about the non-existing care for ME sufferers in Switzerland before, that is even worse than in Germany. :(
  4. enna


    Hi @undiagnosed
    I think it is a great idea to share data to help diagnoses. Thanks for your work and good luck with your project!

    Hi @Joh
    I think it is very bad and i'm even legally obliged to pay about € 400.- per month for the insurance without getting anything in return. I don't want to imagine what testings or treatment I could have bought with all that money! The worst thing is, that everybody in Switzerland thinks we have the best health care and a very good social state, so people, even close relatives, will think if you don't get any help, it proves, that you're not ill.

    So I post my results here. I am mostly after three things at the moment:

    - very high quinolinate
    - very high pyruvate and the lactate/pyrovate-ratio is very low
    - the citric acid cicle is high from citrate to a-ketoglutarate

    But of course I'm very glad over interpretation of any other result too. It has been four years since I made the test, but my state has grown much worse since!

    Thank you very much for your help!!!

    Attached Files:

    Last edited: Jan 16, 2017
    Joh likes this.
  5. Rlman

    Rlman Senior Member

    Toronto, Canada
    have you looked into cavitations? to rule out lingering infections in the root canals? or were they extracted?

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