Wow, I've been dealing with all these symptoms and especially the awful fatigue - bedridden for so long now. I never really attributed this to anything except going on and off of things like prozac or effexor. I have depression too so I was told that each time you go on or off of the meds, you get flu like symptoms and effexor can feel like you're practically dying with all the symptoms that erupt. I just hung on for years doing this from med to med. But the achiness and the fatigue was just taking over my life. My mom finally said "go to the doctor and get tested for mono!!!" So I did and didn't know that the doctor also tested me for EBV, CMB, HHB6, Mono, Lyme, Thyroid, etc, etc. Then I got a phone call the following week saying that I had bands of Lyme showing up and even though it was only 2 or 3 bands, it was 2 of the ones that the body develops to fight lyme. The EBV also came up highly positive. My doctor explained that Lyme can carry 'co-infections' and cause some debilitating fatigue and certainly pains that "jump from joint to joint". I was so confused because i never knew anyone with lyme and the last time I had Mono was like 15 years ago. But the one thing I heard was to stay away from steroids because right now our bodies immune system is suppressed and steroids will only suppress it more. Ugh! It's been a year of Doxycycline, Tetracycline, and now IV Rocephin and the aches have completely gone away!!! My fatigue is still extremely BAD and I'm doing everything I can to find ways to help that. The problem is that both the EBV and the Lyme are still coming up positive. Most people will test negative for lyme and not find out they have it until 10 years later so I guess I was told I was "lucky" that I found out early. But what the heck can be done for the awful fatigue!!!
I felt as bad as I have ever felt in my entire life (and I've had a bunch of awful sicknesses when I was a child) and it wasn't until I took enough months of Tetracycline and the IV Rocephin that those all "disappeared" I'm scared to death to get off of the IV now. I remember the pain, the anxiety attacks (now completely gone but come on with lyme), and the awful joint pains not being able to get out of bed or move my head because my neck hurt so bad.
Well, I guess I don't know what I'm saying (sorry!!!) I just want everyone to get better. I just saw the movie http://www.underourskin.com - there is a trailer on their website and I read a book where patients were NOT helped by their doctors, but instead pushed aside, like they weren't important enough to treat. I know RI and CT are the only two states that protect the doctors who try to treat lyme to beat it (what a bunch of political crap - sorry). I'm just thankful I live in one of those two states.
Now my mom is coming down with the same symptoms I had and the doctor she just went to did an EBV test (positive) but refused to do a lyme test! My EBV was high just like hers but the lyme was the one that nearly killed me. What is with doctors who won't even test you for diseases that are known to be around here. Her daughter (me) and my dad (he caught it early and one month of antibiotics cured him) both have/had Lyme and yet doctors are pushing patients away when they want to get a lyme test. He told her she has EBV from the past and it was probably a "flare up" Her other bloodwork was great. I feel like everyone is getting shafted by not getting the lyme test because the test for lyme will only catch about 50% of the cases - other people are shoved away and given steroids and suppress their immune system so far that by the time they find out they could have had lyme, they can no longer build up their immune system to fight it off with antibiotics. I guess I'm lucky, they found it early, but with a White blood cell count of 3.0 and falling, I'm heading toward isolation room at the hospital if it keeps dropping. Please urge your doctors to do everything possible for you. Don't let them push you aside. The Chronic fatigue has to come from something! The Fibro has to be caused by something? Please please try to find out what's the cause of these symptoms - go check it out - research it - we have to be our own doctors these days. Sorry for the rambling on and on. I'm only trying to help before it's too late for some people. No harm in testing. Please check out the trailer http://www.underourskin.com because most of those people were also told that they had CFS, EBV, Fibro, MS, and more for years.
If I've offended anyone Please accept my apologies!!!!!! I am searching for answers too. The doctors don't seem to want to help us so we have to share our own knowledge to help each other. Please, please don't let me offend anyone here! That is not my intention at all. all of our diseases are VERY real and VERY awful!
Post Edited (Kristiana) : 7/17/2009 11:05:01 PM (GMT-6)