Hi Kitty,
I am on Valtrex. It has helped tremendously. I could basically accomplish nothing at all before the anti-virals. Just taking a shower was the extent of my strength for the day.
Jazzy
Hi, what antivirals are you taking for EBV? Thanks.
Oh I forgot to say that mine ran around 1000 and I believe Wanna's were around 1800 and we were both put on anti virals (we found we have the same Neuro also).
Jazzy
Hi LA, I must have missed this post from before. My brain was in a worse fog a few weeks ago. I hate to read when anyone is suffering. I feel like we are in similiar situations.
Jazzy
Hi Quix,
Yes, I did read your post about EBV and MS. Got me thinking maybe I should post a little more about what my experence has been. Not all lf my MS-like symptoms started after my second bout of Mono. I have had trouble with numb limbs off and on for years. I have also had problems when I get over heated for years. Being hot affected my vision and caused weaknes even when I was a teen.
But the crawling skin and tingling....those sorts of things started after that second bout of Mono. I think that is why the doctors have always been stuck on a virus causing my problems. I have been dx'd at one time or another with FMS, Chronic Fatigue, arthritis, things blamed on EBV.........I am sure I would still be stuck in the same rut if it weren't now for my ON, which by the way, the eye doctors and first neurologist were still trying to blame a virus for. It has become very wearing.
I understand there is only so much the doctors can do. It just get to be a real chore having this stuff come and go like it does and not know why or what is happening. It has been crazy that there can be months and even years between anything significant. I can go go go and then WHAM! My concern this time is I may have some left over issues that don't completly resolve, like my eye and leg problems. I hope the fatigue goes away.
But anyway. All of this is interesting...to the point I can understand it!
Thanks so much ....as always, you are wonderful for taking the time to help!
L
Hi, L. I have a couple comments about your post. First you need to understand that methotrexate is a true immnosuppressant. It is also one of the meds used in cancer chemo. Any of the real immunosuppresants can allow reactivation of "dormant" infections. Among these are tuberculosis, Herpes zoster (which would cause shingles), and EBV, which is another Herpes virus.
I don't know which levels of EBV titers may or may not be indicated in causing a problem. The articles I found were mostly in subscription services and I can't afford $30 or $40 to read a single article, so I can't really answer that question.
I think your history of symptoms suggestive of MS after reactivated infection of mono is very interesting. Did you read my post on the "indirect link" between EBV and MS?. Yes, your chain of events does call into question whether use of an immunosuppressant was indirectly to blame for current neuro symptoms. I'll do some reading.
I'll probably need to write up a little blurb on EBV. What you guys are discussing is nothing new. EBV has been suspected as the culprit for a whole laundry list of ailments, including Chronic Fatigue Syndrome (because it's symptoms so clearly look like an ongoing acute mono infection), MS, Diabetes, cancer, ADEM, Guillain Barre and others. Thousands of researchers - and I truly mean thousands have been studying EBV since the early 80's - have tried and are trying to find out what role EBV actually plays. When I did my Immunlogy Fellowship in the mid-80's EBV was already a hot topic. They have yet to find the "smoking gun." For the most part it is a statistical game of titers and indirect links. This doesn't mean that EBV isn'y a cause,or a trigger, or a factor, but it is clearly not the only one.
From what I read it looks to me like people who's immune systems cannot keep the EBV virus "in check" (those that have the highest titers) may be more likely to suffer the immune attacks on their organs, CNS, pancreas, etc. From what I've read it is less likely that the EBV causes the direct attack.
Quix