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Greetings,
I am writing here because I really don't know where else to go.
Back in August of 99, I became sick with the "flu" again. I went to the Dr. and he was convinced it was Mono. Because of the symptoms. Well, for 3 weeks, I went to the hospital once a week and had a bloodtest run for Mono. Finally, the girl who kept drawing my blood decided she was tired of seeing me in there for the same test, and had the bloodwork sent off to a lab for testing. All this time, I am still sick, and getting worse it seemed. The Doctor keeps giving me antibiotics, and saying "It has to be mono" even when I ask about Chronic Fatigue Syndrome, he tells me, "Don't go looking for that, or you'll spook yourself into having it"
Mid October, I go back to the doctor, and he brings in my chart, and leaves for a moment to take a call. Laying on my chart, I saw the labratory report. When I read it, I got angry. It reported that I had been exposed to the Epstien-Barr Virus sometime within the past 2 years (I know the exact date, and still the doctor wouldn't listen) and that it had gone untreated for so long it had turned into Chronic Fatigue. Now, I'm 26 years old, and have this "illness" I know nothing about.
When the doctor came back into the room, he basically told me I had a bad virus, to get some bedrest and I'd be fine in a couple of weeks.
I came home and researched EBV and CFS and since October, have been more confused than ever. I'm still sick, I still have no strenght. Thank God the memory loss thing isn't acting up right now. But I ask myself daily how long this will last?
Any help would be greatly appreciately.
AB
In Reply to: Epstien-Barr and CFS posted by Tat on May 21, 2000 at 22:20:09:
Hi, A.B.
DR Stoll still not answering posts at this time. By typing Chrnic Fatigue Syndrome into the search engine at top right corner of this post came up with the link below. It's information directly from the archives and has some posts reference to Epstein Virsu. Hoope this helps you. You can type google.com into the keyword search of your computer and search there for more information as well.
Take Care Of Yourself
Paulette
Chronic Fatigue Syndrome
http://search.freefind.com/find.html?id=8942677&pageid=r&mode=ALL&query=Chronic+Fatigue+Syndrome&mode=Match+ANY
In Reply to: Epstien-Barr and CFS posted by Tat on May 21, 2000 at 22:20:09:
Hi, AB:
What is in a name, I say?! I make up my own names for this at this point after suffering and researching and deciding that naming it doesn't really provide clear-cut treatment options. I've read almost everything in the archives by typing EBV in the search field and then reading everything else related and reading Dr. Stoll's book. Fortunately for me my specialist is much more forthcoming and probably more open-minded than yours and continues to look for the right pieces of the puzzle in case there is anything that will help. EBV, with aches and fevers and swollen nodes and incredible tiredness and a million other things that could be related. I have made changes, keep making changes, have decided that Dr. Stoll speaks words of wisdom about the response some of us have to this virus that nearly all adults have been exposed to.
If you don't have a bacterial infection, your doctor has no business giving you antibiotics. Are they helping? What would you do to help yourself? Can I make a few suggestions to start with? (Along with reading everything you can on this site about EBV, SR, and diet).
Vitamin C: Take as much as you can. Unless you change doctors you aren't going to be able to talk this guy into IV Vitamin C therapy, which would be ideal (I haven't wrangled that one yet myself). Get yourself some Ester-C, a highly absorbable and well-tolerated form of vitamin C you can get at your health store. Take it all day long, every day, as much as you can tolerate - aim for at least 1000 to 3000 mg every half to one hour and do it for 10 - 14 days. Afterwards you could reduce this to 3 or 4 divided doses daily but keep taking it and drink lots of water.
Relaxation and massage: Begin practicing SR (Skilled Relaxation - read about it on this site) and get some massage therapy. Massage will help immediately. SR needs to be practiced regularly, takes longer to have glaringly obvious benefits but its clear to me this is a most important part of a wellness program that will have permanently lasting benefits.
Diet: Eat more protein. Eat less junk. Better yet, eat no junk - refined foods, sugary treats. I've altered my diet and have found out some surprising things. Everyone usually does. Pay attention to how you feel and what you've eaten at a meal prior to feeling really rotten. Maybe you're sensitive to that food. Maybe you have Leaky Gut Syndrome and that food is getting into your bloodstream and playing hell with your body's ability to function.
Exercise: I was virtually unable to exercise without having to go to bed for the next 5 or 6 days for a long time. Stretching is good. I saved up and bought a good rebounder from Helen David, whose information is contained on this site (you could input "Rebounding" or "Helen David" in the search field to find out more). I decided that an exercise program such as this which cleanses the lymphatic system was exactly what I needed and even those of us who can't do much can do enough of this to enjoy benefits. Of course any exercise program you feel like doing will help you.
I have experimented and tailored a supplement program for my own needs. Please consider doing this for yourself. My doctor suggested I take l-Glutamine 1000 mg 2 x daily. I use CoQ 10 and take magnesium also (don't use magnesium oxide). I try to take at least 100 to 120 mg of CoQ 10 daily.
From my perspective, you can do more to help yourself than your doctor can do for you. And did you ever think about seeing a different doctor? I don't know that a different doctor could do anything for you, but your doctor doesn't sound helpful or supportive or forthcoming at all.
So search this site, AB. Please write back if you have more questions.
June
In Reply to: Re: Epstien-Barr and CFS posted by June on May 22, 2000 at 07:53:20:
Hi,
June thanks for the insight. Good information.
In Reply to: Re: Epstien-Barr and CFS posted by June on May 22, 2000 at 07:53:20:
June,
Thank you so very much. It was your words that encouraged me to pick up the phone this morning and call my doctor. I figured it this way, my "normal" practictioner was on his way out the door back in October, leaving for a missionary trip overseas and not returning, he basically didn't want to deal with me. So I am going to see his replacement.
Since I knew nothing at all about EBV, I have been reading as much as possible.
I'll make a trip to get the vitamin C today, and I have an exercise program, I do belly dancing, and before all this started, was heavy into Tae Kwon Do, but now, I don't have the energy for that. And, I still work full time. I am lucky enough to work for a company who doesn't really care how many days a week I miss, as long as I have a doctor's note.
Thank you again, I just feel so alone with this sometimes.
Ab
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