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Regular Member

Date Joined Apr 2006
Total Posts : 38
   Posted 5/15/2006 12:00 PM (GMT -6)   
Hi Hippimom:
I have posted here before about my 15 year old daughter who has signs of CFS or lyme. We did consult with a lyme dr and are waiting for tests to come back.  My question to you is I read that you got sick after mono.... She was originally diagnosed with mono in january - spleen pain/enlargement but both mono tests came back negative. She was dizzie and felt exhausted. one month later her legs were stiff, she had extreme feeling of sickness, fatigue, insomnia.  Then one month later her legs feel like jello, she has joint and muscle pains, cramping in her legs and lower back, huge concentration issues, light and sound sensitivity, anxiety and pain in her ribs. Always saying she feels like everything is heavy, shutting down.  Does this sound like CFS to you?
She seemed to be getting better from the mono (or what we thought was mono) , then it seemed to hit her harder. She is too sick for school at this point.   
We have been to a rheumatologist and a neurologist.  Our Dr's are perplexed and do not think its lyme because the initial tests came back negative.  Who would you recommend (speciality) for a diagnosis one way or the other? 
Thanks for your help

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 5/15/2006 12:19 PM (GMT -6)   
Rose, your daughter's case sounds really complicated and unfortunately these symptoms are present in a lot of illness which makes it really hard to diagnose. Did the Rheumatologist or the Neurologist have any ideas what was going on? THe people on the Lyme's forum have said that sometimes the tests don't come back positive, but there is one test they can do that most docs don't do - you could ask the lymes people about this.

If the docs can't find anything else (has anything shown up in her bloodwork besides mono?) your daugher might have CFS or fibromyalgia.

My other recommendation is to keep track of everything and if any new symptoms occur or if she gets worse, take her back in and get more bloodwork done. I would think that every so often she should have a CBC, an ESR and an ANA run. THe ESR checks for inflammation and the ANA will check for autoimmune diseases. There are a lot of people on the lupus forum who had mono at one time and felt like they were never the same and then years later developed lupus symptoms. This is what happened to me. There is research out there now that might indicate that having mono increases your risk of MS and also some autoimmune diseases. Did the neurologist rule out MS?

Don't give up and I do think that maybe every six months or so your daughter should have bloodwork done especially if she isn't feeling any better. Have any of the doctors recommended any meds or treatment at this point? Whenever you get a chance, I'd really like to know how she is doing. We are going through a similar thing with my 8 yr old son who had mono and now has some abnormal bloodwork. It's so hard to watch you child go through this. Take care and tell your daughter that I hope she gets some relief from her symptoms soon.

Take care

Diagnosis:  Suspected Lupus 2004; Raynauds 2006; Sjogren's 2006; CFS 1991; Mono 1985

Meds:  Plaquenil 400mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 200mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain

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Regular Member

Date Joined Mar 2006
Total Posts : 138
   Posted 5/23/2006 6:51 AM (GMT -6)   
Rose I have the same feeling of heaviness and like everything is just shutting down. Usually in the small of my back and legs.
I was diagnosed with fibro after seeing a rheumitologist when I was 35.
I also have cfs with the fibro. I do not have any other disease except diabetes. But I do seem to have all the other symptoms your daughter has.
The only good thing about it is neither of these 2 diseases can kill you just makes you feel like death would be a good alternative.
Keep asking drs. questions. It took me 35 years to finally get a diagnosis of why I was always in pain.
If one dr. says it is all in her head find another one. The drs. don't always know the answer and they are afraid to admit it so they deny that the problem is there.
Have your daughter pace herself and rest lots.
It is the Gateway to freedom. Do you not see it? All you have to do is believe then open it... else there is nothing but a wall blocking your escape!

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