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Old 10-17-2005, 08:58 AM   #1
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Recurrent herpes zoster

I don't know where to post this but will try here.

I was diagnosed with shingles 25 yrs ago (I'm 58 now). It was a single eruption on my right buttock and came with severe headache and nausea. When it recurred my Dr. was pretty freaked and did lots of research on leukemia, etc. but found no particular reason to follow up. I have continued to have outbreaks, ranging from once to three times a year. These almost always are preceded by some stressful situation and a serious headache about 4 days before the outbreak. Sometimes I have no headache. The outbreaks are never serious and resolve themselves within 4 days. In short, I've gotten used to them.

Ten days ago I woke up with a severe pain on the right side of my throat. It was so bad I couldn't sleep horizontally because of the pounding blood. I was able to get in to see my Dr. (new - my last one closed her practice). He diagnosed me with pharyngitis and said that he was more concerned about the herpes (I had had an outbreak the day before this happened). He said that my immune system was compromised whenever I had an outbreak and I was susceptible to anything that came around. He put me on Zithromax. I had a low-grade fever the rest of that day but the throat pain was reduced. I should clarify that this was never what I think of as a sore throat. The pain was internal and very localized. It never hurt to swallow.

The fever never recurred. Five days after the first herpes outbreak and 4 days after the throat pain, I developed another herpes outbreak in a different spot (they always are within a five-inch radius of each other). It's now 11 days since the Dr. visit. I still have low-level throat pain, though it has become more generalized over the entire area.

When I was a child I was tested for leukemia. It seems that I have a history of enlarged lymph nodes. Right now, the nodes in my groin ache. This has been associated with the herpes in the past. I also feel that I may be getting another outbreak soon.

My reading states that only 4% of herpes zoster recurs and it is often associated with immuno-compromised issues, including leukemia or AIDS. I have no reason to suspect HIV.

My Dr. did no lab tests. Right now I don't know whether to trust him - he and his wife have a fairly new practice. He has given me a presciption for Valtrex to take if I have another outbreak.

This does not seem to be resolving itself. Certainly the antibiotics did not work miracles. I would appreciate any suggestions or advice on how to proceed from here. I don't know whether to be worried or not.

Sorry for length. Hope someone had the patience to wade through this.

Oldsailor

Last edited by Oldsailor; 10-18-2005 at 12:24 PM.

 
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Old 10-17-2005, 07:52 PM   #2
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Re: Recurrent herpes zoster

I'm sorry that i don't really have any advice to offer, but this post caught my eye because i think i have shingles too.

i haven't been diagnosed yet but am almost positive that i have genital herpes, and i felt like the disease has taken over my whole body. i developed itchy and painful red bumps in odd places of my body, including my knees, feet, back of my neck, arm, lower back, etc. i thought they were just bug bites, but the more i read, the more it sounds like shingles.

but i'm young and don't have a weakened immune system. shingles re-occurs due to hiv/aids? that thought scares the living daylights out of me.

sorry this didn't help. i thought i could just relate.

 
Old 10-17-2005, 08:10 PM   #3
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Re: Recurrent herpes zoster

Don't be scared, scared. Shingles are a different herpes virus to the genital herpes. Shingles is herpes zoster while genital is herpes simplex. Shingles are almost always a one-time thing and on only one side of the body. If you have outbreaks on both sides it is probably something else. You know, my parents had horrible problems and it turned out to be scabies. Have you had that checked out? Once it was correctly diagnosed it was easy to treat. It's like bug bites, but they crawl under the skin and itch like crazy. They particularly like warm, dark areas, like the genitals.

The only reason AIDS patients get recurrences of the zoster virus is because of their severely damaged immune system. Getting shingles hasn't got anything to do with AIDS - they're just more susceptible to any virus or infection.

 
Old 10-17-2005, 08:48 PM   #4
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Re: Recurrent herpes zoster

Wow, Oldsailor (are you really one?), that is a difficult and rare problem. I had shingles about 12 years ago, while in my mid-thirties, but it has not recurred.

I think you would need a second dr's opinion, even if you completely trusted your dr, since this is so unusual--perhaps a specialist. Seems to me a dr could at least rule out a few possibilities, if you have the money for tests.

Is there a chance you could have mono? My oldest son had it without the average symptoms.

Is there anything you do to boost your immune system? And do you eat well and exercise?

 
Old 10-18-2005, 09:37 AM   #5
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Re: Recurrent herpes zoster

Thanks so much for answering backpacker. Yes, I am - got back on land from the Caribbean three years ago.

Your answer was very helpful. I think I will seek a second opinion. I have considered the possibility of mono and am thinking that I probably need a battery of tests for that as well as other things. I eat well, exercise, and take lots of supplements so I don't think that is a factor. I've always taken the recurrence in my stride but the Dr. has me pretty scared right now. The sore throat is now getting worse again.

I'll let you know what I find out and thanks again for answering.

 
Old 10-21-2005, 11:24 PM   #6
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Re: Recurrent herpes zoster

Someone actually just told me to get checked out for scabies. thank you very much for the advice, sorry i couldn't be of more help to your problem.

 
Old 10-22-2005, 07:43 AM   #7
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Re: Recurrent herpes zoster

Wanted to give you an update, backpacker. I saw a new Dr. (actually his PA) yesterday and was very glad I did. He was extremely thorough and dealt with all my issues. On top of everything my blood pressure was very high and he put me on meds for 3 weeks (ekg was also iffy, so they'll redo it when the meds have taken effect.) I'm scheduled for a CT scan on Mon. for my neck and then have an appt with an otor.. (ENT) the next week. Also doing blood work for everything from HIV and syphillis to lupus and leukemia. Since I had another herpes outbreak yesterday I'm also on a 7-day Valtrex regimen and may be going on daily suppression if the tests don't show any other immune problem. While my throat (actually more neck) pain is getting bad again, I have to say I feel much relieved to have gotten the ball rolling. Within the next few weeks I hope to know what's going on.

I'll let you know how this all plays out.

 
Old 10-22-2005, 09:17 AM   #8
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Re: Recurrent herpes zoster

Good luck, Oldsailor. I'll be looking for your posts.

 
Old 11-01-2005, 08:31 PM   #9
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Re: Recurrent herpes zoster

Let me just say I am not a doctor, but I know that doctors can be misleading about certain issues especially ones they don't deal with frequently. I have been told I had herpes between age 11-13 not exactly sure, but I have had so many doctor tell me different things , some brush it off and said I had foliclitus, but i recently had a culture that came back positive for hsv2 I have had same symptoms. My bottom is almost polka dotted from the variuos outbreaks over the years. I have also had odd looking sores all over my body including my face. It sounds to me more like hsv2 than shingles, but they are in the same family so who knows. I have outbreaks in same area frequently, but I am also a high candidate for cancer. I fear my daughter also has contracted some form also she has a bump on her lip all the time and in the fold of her arm. sometimes they both swell like blisters and then go down but always have a small hump in the skin. I wish herpes were a more cut and dry virus instead of being so ....mysterious and unpredictable and dificult to diagnos. I hope you get better old sailor

 
Old 11-03-2005, 06:58 AM   #10
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Re: Recurrent herpes zoster

Well all the tests are in. The CT scan of the neck proved to be negative. My chiropractor checked it out and determined that it was the SCM muscle which had gone into spasm. I've had 4 neuromuscular massage sessions to try to loosen it up and it has helped. It's obvious that that was the source of the pain. What a weird coincidence with all the other stuff. The pharyngitis eventually resolved itself. I went on the 7-day Valtrex and it seemed to knock out all the viral symptoms I had been having and I now feel like my old self.

The blood tests all came back normal so there isn't any immuno-compromised problem. The Dr. thinks that it may be HSV-2, not zoster, and not indicative of an immune problem. We've decided not to do daily suppression therapy unless I exceed 6 OB a year. I'll keep a 7-day supply of Valtrex on hand to use when I do get another.

So the upshot of all this? I've got high blood pressure and am now on meds. And since my cholesterol has always been high and I've resisted statins up to now, I'm going to start Zocor to see if it knocks it down. So at least I found out some things that needed fixing even if it wasn't what I thought!

Thanks BP and BG for your concern and good wishes.

 
Old 11-10-2005, 04:56 PM   #11
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Re: Recurrent herpes zoster

What a relief, Oldsailor. Sorry I didn't see your post sooner--I've been backpacking.

If there is still a question of simplex vs. zoster, perhaps you could have the sore cultured the next time you have an ob.

Take care!

 
Old 11-15-2005, 12:47 PM   #12
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Re: Recurrent herpes zoster

shingles are no fun, but i take some pretty strong meds that keep my pain under control. I take long actinve avinza morphine and oxycodone for breakthru pain, any of u guys thought aobut this stuff for pain control?
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I am thankful for every second of every day that I am pain free.

~chadd

 
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