My 16 year old daughter contracted a severe case of Mono in September 2007. She experienced a 30 lbs weight loss (115 to 86 lbs.), extreme body pain, and extreme fatigue. Her doctor identified it as the worse case she had ever seen. Her symptoms were subsiding by the end of December 2007, when she was involved in a motor vehicle accident. Although she hit her head and experienced some pain after the accident, the doctor felt she did not sustain any serious injuries.
Approximately two to three weeks after the accident, all of the symptoms we had associated with the Mono had returned. She currently experiences severe pain to the touch in her arms legs back and neck, as well as, a return of the fatigue. This pain has reach a level now where if her arm is held, it actually results in an injury type pain which lasts for days. She has been retested for EBV and has normal levels. She has been through a battery of blood tests, CT scans of the brain, and MRI's of the brain and cervical spine. The C-Spine MRI showed muscle spasms had caused the neck to lose its curve. The only abnormality in the extensive blood work run (all unusual viruses have been tested for) was an elevated level of Reactive C Protein of approx. 20.
She has been undergoing chiropractic treatments to relax the neck and upper shoulder tension. She has received no relief from the pain...it has not lessened and the chiropractor currently feels the pain is not from a muscular injury.
Recently, after having blood drawn, she passed out and stuck her head causing a concussion and temporary amnesia. The next day she lost her balance again, stuck the same spot result in a return of the amnesia. These incidents may or may not be related to her condition.
The doctors we have been seeing are at a lost. She has received some relief from Vicodin, but no other pain relievers help...we have tried them all. She has been put on Effexor ER because of the depression that has resulted from the extended illness. We also did this to ensure that the pain was not as a result of depression. It was a question of the chicken and the egg.
Have you experienced any similar cases? Does anyone have any suggestions? I have research neurological diseases such as CIPD, but none of them seem to fit all the symptoms. Celiac Disease has also been suggested. She is going to be tested today. I would appreciate any help you can offer.
hi, my sympathies to your daughter. i had mono almost 16 years ago was hospitalized for 2 weeks because it caused my air passages to swell up. i was also a very "severe" case. at the time i had a lot of fatigue, dizziness and pain in the occipital region of my head that seemed to be swelling/edema. like your daughter i also passed out during a blood draw. in addition i had difficulty reading and walking due to the dizziness. no one knew why. it was postulated that i'd had an "allergic" or autoimmune reaction to the mono.
it took one year to feel moderately better and i eventually "recovered" on tricyclic antidepressants which i started taking a year later and which really gave me back my life from pain. the only other thing that helped me, years later when i was no longer on the tricyclics, was taking benadryl, which seemed to help me sleep and calm my immune system/allergies.
but since then i've had a host of persistent autoimmune issues, including elevated antinuclear antibodies and antiphospholipid antibodies, including one that's kind of rare and they don't test for often (aPEs). and now i am having other problems that seem neurological and perhaps more severe, possibly ms.
if she were my daughter i'd insist on an autoimmunity workup from a good rheumatologist if she hasn't been to one already, and would consider discussing those meds with her doctors. my thoughts and hopes really go out to you and your daughter. she's lucky to have you. xox
i should add that like your daughter i came down with mono in september, seemed to be getting better gradually until about december, but then had a return/worsening of my symptoms (though no accident to blame).
Thank you for your post. She has been tested for autoimmune diseases. We are now testing things like Celiacs disease and seeing a neurologist. They put her on Effexor and her spirits and appetite has improved, but the pain has actually become more constant and harder to relieve. I was very surprised to find several professional article linking EBV to chronic pain disorders. I noticed something odd about my daughter's white blood cell count. The elements that appear to fight viruses are increasing with every work up...she's had four complete ones since September. Her doctor, who is very good, appears to be out of her scope and looking for other opinions. I have come to believe there is nerve damage, whether it was caused by the auto accident or some condition arising from her weakened condition. I'm going to have her screened thoroughly by the neurologist. Thank you.
hi, yes, i would believe that there is neurological damage. i'm glad they've looked into autoimmunity, but there are two things that doctors never checked for me, and would have made such a difference if they had; those are
a) complement (CH50 is one of those tests) and b) antiphospholipid antibodies, though i was thoroughly worked up for just about every autoimmune issue in the world. in retrospect, that seems strange because viruses like mono (EBV) can activate complement, which destroys tissues if it becomes too active (or can even become too low, because it actually becomes depleted trying to repair damage). abnormal complement levels could show if your daughter's problems are related to some malfunction in the immune system. and a white blood cell count or other tests that show she's fighting a virus indicate that the EBV virus is possibly still active and/or that the immune system isn't hacking it. just a thought.
b) as for the antiphospholipid antibodies, i think they're rarely tested for (except the anticardiolipin and lupus anticoagulant) in standard autoimmune workups--but there are six main ones, and they cause a host of problems ranging from coagulation issues to neurological issues to miscarriage. and to tell you the truth, they've only known about them for 25 years, some of them less than 10, and no one tests for them standardly. but they're known to cause neurological issues. look up the literature on anti-beta2 glycoprotein antibodies and antiphosphatidyethanolamine--both i believe are known to bind to the central nervous system. i think i got that spelling right. but seriously, have her worked up. i would. not saying she has it, but i wouldn't leave that stone unturned. and neurologists don't think of it right off--it's not their area. take her to a good hematologist--i wish i'd known about them years ago. they study blood disorders and so are knowledgable about disorders that crossover between rheumatology and neurology, more than the doctors in those specialties are!!!!
Thank you very much for the advice. She is going in for blood work on Monday. I'll see if I can get them to add these.
Celiac came back negative. My visit to the Neurologist was rather unrewarding. He diagnosed her with Viral Meningitis and wanted a spinal tap. I said no because she hasn't had any of the other symptoms...other than pain. He wasn't happy. But I refused to have such an invasive procedure performed with no evidence. He is now testing her for diabetes...although her blood sugar has always been low, vitamin B12 deficiency and several more obscure disease. He prescribed Lyrica and she had a profound negative reaction. I think a hematologist might be an excellent idea. Thank you.
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