Request for feedback on my situation

mhtord

New Member

Joined : Feb 2006

Posts : 5

Posted 2/9/2006 3:33 PM (GMT -7)

For about 6 years now, since 2000 my health has been deteriorating. I used to be extremely active and do triathlons but after a while I noticed that I was feeling increasingly tired during my workouts, would have a hard time hard time getting out of bed the next day and I started having more frequent herpes symptoms. At the time I'd had genital herpes for
8 years during which I would get outbreaks every 2 years. However, since 2000, I started having what felt like increasingly frequent mini outbreaks. I would have the tingling and itching prodrome but it would never progress to the cluster of blisters that I was used to; instead I would get redness and soreness which would last a couple of days but would then go away. Sometimes I would have a painful, red bump but never a real blister. After a couple of days, which was much shorter than my previous outbreaks, the soreness in the skin would abate but I would still have the tingling and itching. I went on valtrex to suppress these symptoms and it helped to the point where the tingling and itching would be controlled most of the time and I could forget about it. However, still whenever I tried to exercise to my previous ability, the next day I
would be exhausted and the soreness, redness and bumps would appear a couple of days later. So, I lowered my expectations and resigned myself to the fact that I would have to do less so while remaining on the valtrex I managed to do a little bit of mild exercise a couple of times a week without getting painful herpes symptoms and I just pushed through the fatigue the next day. I had worked out some kind of balance which I could manage and decided to have a baby. I had to go off the valtrex
and within 6 weeks was having constant symptoms again. Anyway, my baby is now 11 months old and I've been back on the valtrex for almost 4 months now with no improvement and I am constantly sick. I've had back to back colds since September 2005, interspersed with stomach bugs. My herpes symptoms NEVER go away now - 24 hours a day tingling and itching escalating to the soreness every 3 days or so. It also feels like I have swollen glands in my neck all the time and when I swallow there is a lump there, like a gland is swollen. I wake up as exhausted as I was when I went to sleep and I NEVER feel refreshed even though I get at least 8 hours of sleep. I am feeling so frustrated
and I'm sick and tired of it all. My doctor has done a myriad of tests which have turned up nothing - my blood work is normal.

I don't know what to do - I start crying on my way to each doctor's visit because I know they're going to dismiss me. Does anyone have any idea what could be wrong with me? Sorry this is so long. Thanks.

hippimom2

Veteran Member

Joined : Jul 2005

Posts : 5403

Posted 2/12/2006 3:44 PM (GMT -7)

I'm really sorry you are so sick and aren't getting any help. What specialists have you tried? It sounds like your immune system is pretty messed up. I don't know if seeing a really good doctor in internal medicine would be helpful to start off with. In general, internal medicine doctors like to be like detectives to try to figure things out. If you get a good one he/she will run a lot of tests and really try to figure things out.

I really hope you are able to find a good doctor. It is SO frustrating when you know something is wrong with you but you can't get a doctor to help you.

Dx: Suspected Lupus 2004, CFS 1991, Secondary Raynaud's 2006

Meds: Plaquenil 400mg, Tramadol 100 mg 3x day, Amitriptyline 10mg, Neurontin 100mg

mhtord

New Member

Joined : Feb 2006

Posts : 5

Posted 2/13/2006 8:55 AM (GMT -7)

Thank you for your reply, hippimom2. I have seen tons of specialists including infectious disease, endocrinologist, gastroenterologist, gynecologist, psychiatrist and internist. But the internist wasn't very good - he diagnosed me as not wiping myself properly when I use the bathroom (I was 30 at the time). They've all been pretty dismissive and put it down to 'depression'. I also saw a CFS specialist and he said it wasn't CFS but at this point I'm thinking I should maybe get a second opinion. Does it sound like CFS to you?

I will do some research to see if I can find a good internal medecine doctor.

Thanks.

hippimom2

Veteran Member

Joined : Jul 2005

Posts : 5403

Posted 2/13/2006 11:58 AM (GMT -7)

The exhaustion, the swollen glands, and getting sick frequently can all be symptoms of CFS. I don't know enough about herpes to know if an outbreak can make you sick too or weaken you immune system. I really should learn more about CFS. RIght now I have a lot of lupus symptoms and I'm in the frustrating process of trying to get a diagnosis.

I have been in similar situations that you have been in with doctors. I think a lot of docs don't want to take the time and energy to try to figure out what is wrong if they aren't able to figure it out right away. Of course, a lot of docs like to say it's depression if they can't figure out what is wrong.

Dx: Suspected Lupus 2004, CFS 1991, Secondary Raynaud's 2006

Meds: Plaquenil 400mg, Tramadol 100 mg 3x day, Amitriptyline 10mg, Neurontin 100mg

Dee50

New Member

Joined : Feb 2006

Posts : 7

Posted 2/14/2006 8:51 AM (GMT -7)

mhtord,
Good morning. I'm sorry you are not getting to the root of your heathy problems I know how hopeless what makes me feel. And just adds more stress to my life! Maybe you should look into Lyme. It's co-infections can realy be strange. Something is keeping the herpes active.
I have EBV that is active and I'm trying to get it inactive. It's lots of resreach work and not much help from doctors, there is so much they just don't understand. Keep searching and I believe you will get to the root. I'll be thinking about you. Take care and hang in there.

Dee50

ME/FM/Lyme?

mhtord

New Member

Joined : Feb 2006

Posts : 5

Posted 2/16/2006 10:04 AM (GMT -7)

Dee50

Thank you for your post. I was tested for lyme disease in December - apparently they did both acute and convalescent screens and they came back negative.

I have a question about your EBV, though - how do you know it's active? Did you have some kind of test done? Do you have CFS or do you still not know?

The thing is I don't have any of the joint/muscle pain that I hear CFS patients have. Do you think it's possible that all my exercise weakened my immune system so that the herpes and other viruses simply took hold and now my immune system is suppressed and can't handle anything? The only other thing that happenned the year I started to get sick was that I went to Greece. But I can't really remember if I was starting to feel unwell before I went or if it started when I came back. I can't have been that unwell when I was there because I was walking around sightseeing, swimming in the sea and partying until early morning which I certainly can't do now.

Thanks.

FallenAngel311

Regular Member

Joined : Nov 2005

Posts : 90

Posted 2/24/2006 9:47 PM (GMT -7)

Have your doctor test you for the Epstein Barr Virus (EBV) and see how that comes back.

From what I understand through the research I've done, most people do get EBV, but it never becomes active or causes any symptoms. However, it can cause mono, and the one page I read did say something about if you have herpes... wait lemme get some links... I know ONE of these pages mentioned it...

http://www.cdc.gov/ncidod/diseases/ebv.htm

http://en.wikipedia.org/wiki/Epstein-Barr_virus

ahhh the second one did... the first one has some good info too. You can also do a google search and read up tons about stuff like this... and hopefully find some info that might help your doctor help you. There are medications that work for fatigue too... Provigil is one, and there's others also that help... but I'm not familiar with them personally.

Hope that helped some and hope you find some answers!!!

Hugs,

Nikki

I have chronic fatigue syndrome, anxiety (at this current moment), and some minor abdominal pain which still hasn't been figured out yet... need a break from all the testing ;)

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