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My Dr says I have CFS but I think I have something else. Thoughts please?

Discussion in 'General ME/CFS Discussion' started by Georgeadey1992, Jun 26, 2017.

  1. Georgeadey1992

    Georgeadey1992

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    Hi everyone,

    I have been reading a lot of posts on the forums recently with great interest. I was 'diagnosed' with CFS about 2 years ago by a private doctor I am seeing, but very recently have had positive test results for -

    EBV - I suspect this is chronic as I had EBV when i was 20
    Lymes disease - Armin Labs
    Coxsackie Virus
    Chlamidya Pneumoni
    Mycoplasma Pneumoni
    POTS - I am being prescribed medication for this at the moment

    Loads of Symptoms but the main ones are-

    Fatigue
    Exercise Intolerance
    Muscle Weakness
    Unrefreshed Sleep
    Chronic Constipation (seeing a Neurogaestroenterologist soon as my doctor thinks this might stem from a autonomic issue)

    The doctor I am seeing thinks this all comes down to the EBV and I have recently been started on Valcyclovir for this. But he/and I are unsure how to tackle the Lyme and the co-infections.

    Is this CFS or more of a serious post-viral fatigue type of thing? Unfortunately I am only out of bed for 4-5 hours a day at the moment. And are there any/many stories of people fully recovering from the above tests/symptoms?

    Thanks

    George
     
    Last edited: Jun 26, 2017
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I'm afraid that this is not the kind of question that can be answered on a forum. You might want to change the title of your thread as we can't diagnose or give medical advice here. I know that isn't what you were hoping for, but no one on a forum can answer a question like that.
     
  3. Georgeadey1992

    Georgeadey1992

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    Can I post this on a different forum? or do you mean not at all on PR?
     
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Not at all on PR. There is a forum rule prohibiting diagnosing or giving medical advice. But you can edit your thread title and post with that in mind.
     
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  5. Georgeadey1992

    Georgeadey1992

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    Thank you
     
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  6. *GG*

    *GG* Senior Member

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    I think you could say, "My Dr says I have CFS but I think I have something else, thoughts please?"

    GG
     
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  7. Georgeadey1992

    Georgeadey1992

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    Great Idea, Im being a bit dim and trying to work out how to edit the thread title
     
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  8. Basilico

    Basilico Florida

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    Well, first: welcome!

    and second: it sounds like you have a lot of the same symptoms as many people here. So, whatever you have, you are in good company ;)

    I, myself, had IBS-C for many years (and my husband had IBS-D for years as well). We found little to no improvement from gastroenterologists and instead spent a lot of time researching various probiotics and supplements and were able to improve our GI system a lot.

    There is a wealth of great information on this site about various probiotics and protocols people have used to improve their GI situation. That might be a good place to start, as I'm sure you're probably feeling a bit overwhelmed! If you are having trouble finding relevant threads, let me know and I'll see what I can dig up for you. :)

    There are also some great threads on supplements to reduce PEM (do you get that in addition to exercise intolerance?)

    I hope you find this forum to be a great resource!
     
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  9. Georgeadey1992

    Georgeadey1992

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    Thanks for your reply! I have taken probiotics before but always had a bit of a strange negative reaction to them, which wasn't normal die off, but i only tried two different brands so I think I need to experiment more!!!

    That would be interesting in regards to reducing PEM though, although the fatigue has got so bad Im not doing any exercise at all at the moment
     
    MEMum likes this.
  10. Basilico

    Basilico Florida

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    Have you seen this thread:
    http://forums.phoenixrising.me/inde...onal-malaise-crashes.48438/page-2#post-796667

    Some people get PEM even when they are not exercising, just from daily activities, so even if you're not exercising, it's possible something might help.

    A new probiotics thread I just started relevant to CFS specifically: http://forums.phoenixrising.me/inde...ione-improves-heart-health.52393/#post-868198

    And I posted a lot of info on probiotics I've used on this thread: http://forums.phoenixrising.me/inde...oo-much-over-the-gut.49374/page-2#post-816713
     
  11. Georgeadey1992

    Georgeadey1992

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    Wow, this is great. Thanks! I will get reading it as soon as possible!!
     
  12. JaimeS

    JaimeS Senior Member

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    While no one here can diagnose you, I agree with @Basilico that your symptoms are familiar to others here.

    Ditto -- very bad neuroinflammation on my part in response. Not fun. I did find a brand that I didn't react to, eventually. Feel free to PM me if you'd like to know more, or I have a blog about what I take and why. :)
     
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  13. Woolie

    Woolie Senior Member

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    Its really hard to say if a person does or doesn't have CFS, because its mainly a diagnosis that doctors make when they can't fit your symptoms to any disease they fully understand. So you're put in the grab bag of "just don't know" cases and labelled with CFS.

    Yes, there are a few central features - like feeling sick after activity, immune symptoms, POTS etc - but they're pretty generic and it could still turn out that people diagnosed with this label have different underlying diseases.

    We don't really know if CFS and post-viral fatigue types of things (to quote you) are the same or different. If you're asking if it will improve, then the answer is: we just don't know. Lots of people do go into remission for long periods (some indefinitely), but you can't know if or when that will happen.

    I know this doesn't sound very encouraging, but doctors lied to me when I was first sick and assured me I'd get better after two years. That wasn't the truth, and I don't think we should be lied to. Some people get better and others don't.

    Having said that, I went into remission after four years, and went on to live a normal life for the next ten. Its early days for you, so your chances are as good as they could possibly be. Just make sure you listen to your body and rest when it tells you to.

    Its hard doing nothing for long periods, when you've got so much living to do. But many of us here wish we could go back to the beginning and rest more - so learn from our mistakes!
     
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