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Misdiagnosed with mono, could it be late lyme?

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kat81
kat81

About  two months ago I noticed I started to get intense brain fog and fatigue, I would sleep for hours upon hour. A couple days go by and I go to the primary care doctor and my tests come back positive for both mono and strep. I never had the typical symptoms like sore throat or high fever, even with the strep. I start to feel a better by the end of the week but it only lasts for a couple days and then I notice I look extremely pale or flushed, extreme fatigue, and dizziness. I go back to the doctor and they say I still have mono and haven't made antibodies yet. Weeks go by and I still feel extreme fatigue and mental confusion/ brain fog and I'm told I still haven't made antibodies with more blood tests and am sent to an ID. The ID does more blood tests and all of that comes back good and my immune function is normal, but it's shows no sign of me ever having mono or mono in my blood. She sends me to a rheumatologist. Fast forward a couple weeks later and I catch some nasty viral illness which dramatically increases my fatigue, sore throat with white spots on tonsils, high fevers. I go to the ER for the fevers and they decide to do a Epstein-Barr panel and it comes back with no evidence I ever had mono the last two months. I'm later told that all the doctor offices tests were false positives. I was wondering if they're could be anything that could cause this, I've already been checked for cancers and autoimmune. My guess was late stage lyme which would explain the extreme fatigue, mental fog, memory problems and muscle aches. I mentioned this to my doctor but she just brushed it off stating "you don't have lyme" . Please help!! The last two months have been miserable !!

0 likes, 12 replies

12 Replies

  • Anonymous111
    Anonymous111 kat81

    Posted

    I think you can be pretty confident you dont have EBV. 

    Any skin rashes or lumps and bumps?

    Any recent foreign travel or unprotected sex?

    How old are you? What skin colour do you have?

    Any change in how often you have to pass urine?

    Any problems with anxiety or depression?

    You mostlikely have idiopathic chronic fatigue - its very common. It’ll get better on its own. Exercise is the best treatment.

    • Anonymous111
      Anonymous111

      Posted

      Have you ever been biten by a tic - if not you wont have lymes disease.
    • kat81
      kat81 Anonymous111

      Posted

      No skin rashes, no recent foreign travel, no unprotected sex. 

      I'm 17, white 

      Urinating less I would say

      I've been mostly depressed due to how sick I've been the past two months. I generally want to go out and do things but don't have the energy to. And I've always dealt with aniexty but see a counselor for that.

      My rheumatologist is sending me to physical therapy twice a week to handle the excercise problem 

    • kat81
      kat81

      Posted

      I also remember pulling a tick off me earlier this year, but not a rash. And have been to the lake a couple times this year, and my house is right in front of a wooded area. So ticks aren't uncommon.

    • gregory12176
      gregory12176 kat81

      Posted

      Go back to doctor demand testing!

      The longer you wait the less likely it will be to cure. Good luck!

    • david41094
      david41094 Anonymous111

      Posted

      There is some evidence to suggest that Lyme can be transmitted by other ways.
  • gregory12176
    gregory12176 kat81

    Posted

    So I would like to reply to kat81.

    Your story sounds almost a mirror of mine. The difference is I made my primary give me a lymes test. She was hesitant about it but she sent in my labs. 2 weeks later to her surprise the test came back POSITIVE... It was both a relief and a worry. Relief I had a face to my fatigued brain fogged body. But a worry because this disease if gone untreated is not treatable. Now I take better care of myself and primary treats my symptoms. I guess what I'm trying to say is if you have 1 inkling make your doctor take the test. After all its your body your health...

    • kat81
      kat81 gregory12176

      Posted

      How did you convince her to give you a lyme test, and were you diagnosed with EBV first?
    • gregory12176
      gregory12176 Anonymous111

      Posted

      I have good days and bad days. And great primary physician . So No still sick.You have to learn to live with it.
    • gregory12176
      gregory12176 kat81

      Posted

      You just say.I WOULD LIKE TO BE TESTED. And don't take no for an answer.. Remember your body your health in that you are the boss of both...

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