Discussions By Condition: I cannot get a diagnosis.

Mystery illness lasting 4 months for myself and my daughter... Thoughts?

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: Anonymous
  • January 31, 2018
  • 01:06 AM

My 13 yr old daughter and I got sick mid sept (two weeks apart) and have been sick for 4 months. Out of work/school for 2.5 months, now slowly building up to full time with sick days. Can't get a diagnosis other than "mono like virus" we can't test for. Seen 10 doctors (4 primary care, 3 infectious disease, 1 rheumatologist, 2 naturopaths.) Interested in any ideas? (Son/husband not sick, live in NH

Symptoms: muscle aches (arms/legs muscles only, my daughter explains it like it feels like a sumo wrestler is sitting on her), fatigue, flu like feeling. NO fever, NO headache, NO rash. NO joint pain. NO sinus issues She has a cough, breathing issues, I don't. (Muscle aches and fatigue are improving and now have intermittent days, home sick about 1-2 days a week)

Tested Negative for: Mono (5 times) ( I had past infection, she didn't) CMV, strept, blood disease, Lyme full panel (multiple times), Babesia Duncati/ microti, anaplasma phagocytip, HHP6, HHP7, parovirus (daughter showed past infection, I didn't), c pneumonia (both showed past infection), ehrlivhia chaffeenis

Treatments we have done: I did a 5 day Zpack (when they thought it was bronchitis), we both did doxycycline (2 week and 3 week course, when they said it might be Lyme), herbal antivirals

"Treatments" we are doing: probiotics, vitamins,massage, meditation, icing/heating, changed diet (no wheat, no dairy, no eggs). Outside walks


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3 Replies:

  • Did you ever get an answer?
    Anonymous 1 Replies Flag this Response
  • I know that probiotics are all the rage.... but I see them as prn type otc meds for short term use, like after an intestinal virus or a course of antibiotics.
    Some times we can over do it with trying to help ourselves and add to the issue.
    I would suggest working separately with your treatments to see what is and isn’t giving you relief.
    I hope you both can resolve this soon.
    Anonymous 1 Replies Flag this Response
  • you could both have lyme even if tests are negative. and you could both have it at the same time. we did. try to find a naturopathic physician (they are wonderful and much better at diagnosing a lot of problems) or an m.d. who is well educated in lyme disease. we went through the same thing. it took 8 mths to get a diagnosis from a dr. who specialized in lyme. he knew the diagnosis had to come from the symptoms and not a test. this was a long time ago, but the same thing goes on now. if you feel up to it and are able to concentrate, maybe you can read up on the disease to see what it takes to finally get a doctor to listen to you and to realize that you are truly sick. best of luck to you both.
    Anonymous 1 Replies Flag this Response
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