Carification on Lab Test for CSF

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madoryko
Regular Member


Date Joined Jun 2006
Total Posts : 41
   Posted 6/7/2006 4:01 PM (GMT -7)   
Okay I'm an air head, had an appointment today w/DR, thank goodness for cell phone calender alarms. It turns out the test the DR. was referring to is the mono/EBV viruses. Guess who tested positive for mono eyes , yea me,  well the General doc doesnt want anything to do with it. In his mind its a Ruemys(ies) specialty and that doctor will handle all my CFS care. I'll do some research about this but I would absolutly love any other mono suffers to tell me how they deal, what treatment (if any) is available, and any odds and ends I might need to know. By the way I love this place. I cant beleive I found people who understand exactly, and I mean exactly what Ive been dealing with all these years. I read on the funny stories thread soooo many things that made me laugh, at myself. The walking into wall thing OMG, I do that all the time :-) The potty issues of gotta go right now, the microwave story, Ive done somthing so simulair. You guys are the greatest. For the first time in over a decade I dont feel alone about this theif that snatched away my essence, vitality, and confidence that I can follow through, eventhough I desperatly want too but cant. I know you guys will teach me what I prayed for years to cultivate, and still havent been albe to do yet, modesty. The frustration, and yes I still torture myself about the old me, but a lot of your post show such a comendable attitude, I feel trapped in my body, and how do you explain this to other people you just cant. This place is great and thank you everyone for posting, it really helps especially a newby like me.

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 6/7/2006 7:59 PM (GMT -7)   
Do you know if your mono is currently active or did you test positive for EBV? It's all a bit confusing but I think that once you have mono/ebv - you will always show it in your bloodwork, but there is a way to tell if the mono is active. I'm pretty sure that a lot of people with CFS test positive for ebv.  I had mono about 5 years before I was diagnosed with CFS. I wish there were a lot of treatments but there aren't. THere are some meds for depression and a med called Provigil that some people are trying for fatigue. Some people have reported good results with Provigil, other people have had problems with it. I hope the rheumy is able to help.

I agree with you about this forum being a great place. There is nothing like reading the posts and completely relating to what other people are going through. Some of these chronic illnesses can leave a person feeling pretty alone sometimes so it's nice to have a place to go where you know others understand what you are going through.

Any idea when you will see the rheumy? It would also be a very good idea to mention the discoid lupus to the rheumy since rheumies also treat systemic lupus and the rheumy could determine if the discoid lupus has progressed to systemic lupus.

Keep us updated on what you find out. 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

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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