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Subject: "Long term mysterious PHN from HSV? Please advice me!"     Previous Topic | Next Topic
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Jyddsteef
Member since Jun-13-11
5 posts
Jun-17-11, 11:32 PM (CST)
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"Long term mysterious PHN from HSV? Please advice me!"
 
   LAST EDITED ON Jun-17-11 AT 11:58 PM (CDST)
 
Hello,

I am a 29 year old man experiencing fluctuating lumbosacral and peripheral neuralgia, which seems to stem from a reinfection/superinfection of genital HSV-1 (I have had oral HSV-1 since childhood). Yes, it is possible to be reinfected with another strain of HSV-1 again in your genital area, although its not very common. I have taken about eight "top quality" type specific blood tests for HSV-2 spread out over ten months after the date of possible transmission (and I don't know if that person had anything - and I don't want to ask her, I just highly suspect it because of when the symptoms started). These HSV-2 tests have all been negative, far under the lower 1.1 limit for testing positive. That more or less means I can rule out HSV-2 (although I know in extreme cases seroconversion never happens or can take even longer). As many of you here, I am dumbfounded by the lack of professional knowledge about PHN due to herpes simplex. However, I have done plenty of research on my own and at least been able to find some doctors that seem open to the possibility that this could be the case here, although none of them have seemed too convinced. My inner thigh pain is getting better, as well as my pain in my legs/buttocks/feet and the more rare sensations of pain in my armpits and hands. I can still feel waves of slight pain in my boxer region and legs several times per week and some days constantly, but its a "mild" pain, so I can handle it. It's now almost a year since the possible transmission date, so there's hope. It's going the right way.

Of course, my medications are helping me a lot. Some doses are low and some are higher. I am currently on a daily cocktail of 1000 mg of Valtrex (500 mg in the morning and 500 mg at night), 2000 mg of Lysine (1000 mg in the morning and 1000 mg at night), 20 mg of Amitriptyline (10 mg in the morning and 10 mg at night) and then also 300-600 mg of Gabapentin during the day, depending on the pain level. I have checked with several doctors that it's ok to take this much Valtrex and Lysine daily and I plan to continue with this cocktail for years to come and maybe modify the doses when needed. I also do yoga and run a few times per week, drink lots of water, take extra minerals and vitamins and long hot baths and showers. Combined, the medicines and this lifestyle is making this problem bearable - and I also believe that the pain is subsiding slowly on its own, on top of all this.

I have seen a neurologist during the past year that is more or less oblivious when it comes to PHN due to herpes simplex, but she has tested me for every. other. disease. that could create symptoms similar to those I'm having, and I'm completely healthy (or so it seems). Many messages about PHN here on the forum scream of desperation and depression, where people are seeing doctor after doctor, year after year, looking for answers, in vain. So my question is directed to the most "ambitious" of those people: is it in my current situation really worth it to continue searching for answers, trying out new doctors and doing possible complex procedures to investigate this further - or not? Again, I do not know for sure if this is even due to herpes simplex and all other tests show there's nothing wrong with me (although something is definitely going on). I will take more HSV-2 tests in the future, but in the meantime I feel that I might not be able to do much more than what I've done so far.

Even the people here that have met doctors that do know a lot about this problem, still seem to end up in the same situation with the same issues as before. So, it just seems to make more sense to accept this for now and continue with my medication, exercise, yoga and healthy living instead of spending hundreds of hours and thousands of dollars on trying to find doctors that can say that they believe my pain stems from herpes simplex with absolute certainty and that put me through expensive and time consuming tests, just to leave me in the exact same situation as before. I have spent so much time and money on this over the last year - and with no disrespect to anyone here - I simply don't want this to take over my life completely and make me in to a bitter and disillusioned person. I'm striving for acceptance and a level of that acceptance has already started to appear within me. I want that feeling to continue.

I'm grateful for any recommendations. Are there things I haven't thought about? Can you direct me to resources and/or priceworthy doctors that can provide advice that can improve my situation further? Has anyone else here thought about the possibility of having a strain of HSV that is not detectable, or having genital shingles? Please feel free to say anything. I know it might seem paradoxical to both want to know more and hope that I don't need to look for more information, but I think you can relate to my ambivalence. And also, I know that misery loves company, but try to be objective in your advice. I wish you all the best in your struggle.

Regards,
Jyddsteef


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  Subject     Author     Message Date     ID  
  RE: Long term mysterious PHN from HSV? Please advice me! TheOriginalScooter Jun-21-11 1
     RE: Long term mysterious PHN from HSV? Please advice me! Jyddsteef Jun-23-11 2
     - Jyddsteef Jun-23-11 3
         RE: - TheOriginalScooter Jun-25-11 4
             RE: - TheOriginalScooter Jun-25-11 5
                 RE: - Jyddsteef Jun-30-11 6
                     RE: - TheOriginalScooter Jul-07-11 7
                         RE: - Blue Moon Jan-09-15 8

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TheOriginalScooter
Member since Aug-29-10
30 posts
Jun-21-11, 03:33 PM (CST)
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1. "RE: Long term mysterious PHN from HSV? Please advice me!"
In response to message #0
 
   Hi Jyddsteef ~
In your search for relief of neuropathic pain I suggest you review Dr. Russell Portenoy's video http://painclinician.com/video/id/153/. If the link gets lost you can find Dr. Portenoy on PainClinician.com. This a very valuable video on "how" to treat neuropathic pain and the website may direct you to a neurologist in your area. I sincerely hope you find relief.

Scooter


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Jyddsteef
Member since Jun-13-11
5 posts
Jun-23-11, 07:54 PM (CST)
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2. "RE: Long term mysterious PHN from HSV? Please advice me!"
In response to message #1
 
   Thank you Scooter. Dr. Portenoy is talking a lot about Gabapentin in the video, which I am already on (also called Neurontin, as you know). What other things have worked for you in your search to relieve your neuropathic pain? Any thoughts from you would be greatly appreciated, since you're so well read on the topic (I've followed you here at HHP).

Regards,
Jyddsteef


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Jyddsteef
Member since Jun-13-11
5 posts
Jun-23-11, 07:56 PM (CST)
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3. "-"
In response to message #1
 
   LAST EDITED ON Jun-24-11 AT 05:20 PM (CDST)
 
-


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TheOriginalScooter
Member since Aug-29-10
30 posts
Jun-25-11, 11:49 AM (CST)
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4. "RE: -"
In response to message #3
 
   LAST EDITED ON Jun-25-11 AT 11:50 AM (CDST)
 
No outbreaks and valtrex. Overall valtrex seems to work better at controlling my virus. I have had several months with no outbreaks and little if any phn. Once the outbreaks kicked backed up the phn amped up with each outbreak. I hope you watched the entire video. The first line of defense for neuropathic pain are opioids for moderate to severe pain. Morphine plus gabapentin appear to work best. I was not aware of that before I watched the video and if I ever experience severe phn again, ie, continual electrical shocks in my labia area and or a deep ache, I will look into a stronger pain med, especially when the pain is effecting my employment.

I have severe allergies and neurontin, in addition to my allergies, make me very tired. Neurontin (gabapentin) also made me feel spacey and unable to cognitively function so it was not a successful treatment for me. Dr. Portenoy states neuropathic pain "poses a great clinical challenge because it is fundamentally an "inference" about the existence of a set of mechanisms that "are not" well defined and that inference is not generated by any specific set of phenomena that you are able to illicit from a patient".

Good luck to you. Your neuropathic pain may not be H related so stay open minded and think outside the box.


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TheOriginalScooter
Member since Aug-29-10
30 posts
Jun-25-11, 01:41 PM (CST)
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5. "RE: -"
In response to message #4
 
   LAST EDITED ON Jun-25-11 AT 01:42 PM (CDST)
 
As far as continuing your quest for "the cause" of your neuropathic pain that is subjective. A wise person once told me "get involved in research". It also depends on the degree to which the pain is interrupting the quality of your life. I am more interested in the treatment of my pain at this point than the cause. I am content with having exhausted my search for an answer and was diagnosed with phn by Dr. Rapkin at UCLA who is an expert in her field. She was on the mark - when the outbreaks stopped for 5 months - after switching back to valtrex and some days taking 2 grams - I had pretty much no phn.

The time line and threshold for everyone is different and only you can answer that question. I will say in my experience people with GHSV1 do not experience the type of pain you are describing. Their symptoms get under control much quicker and their outbreaks are far less if any. No to say it can't happen but I encourage you to look at other causes. As of 2/17/2010 my HSV2 Igg was 1.25. Oct of 2011 will be my 4 year anniversary.

Scooter


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Jyddsteef
Member since Jun-13-11
5 posts
Jun-30-11, 02:52 PM (CST)
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6. "RE: -"
In response to message #5
 
   LAST EDITED ON Jun-30-11 AT 03:30 PM (CDST)
 
Thank you so much for your replies, Scooter. I see that Dr. Rapkin works at a clinic only for females. Do you know of any other doctors in California (or if not, in the US in general), within neurosciences and/or infectious diseases, that hold special knowledge about the connection between PHN and HSV? Despite me being utterly tired of spending time on this, I feel I would benefit from a clear diagnosis and to discuss how to move forward with someone like that. It's not enough with a doctor like Dr. Portenoy, who's only focused on one piece of the puzzle. I need to talk to someone who has a specialized overall view on PHN due to HSV, if such a person even exists.

Regarding other possible causes than HSV, sure, I am open to that, but since the focal point of the pain is my inner thighs - and since I have had slight heat rashes there after running at the gym (not typical HSV-lesions, mind you, I've even showed them to a clinician), that suggest a new type of sensitivity in that area - I would think it's HSV, or possibly some rare form of genital shingles.

I agree with you that is seems strange that HSV-1 would cause these widespread neurological reaction, but there are actually several scientifical studies that show that HSV-1 can be recurring, aggressive and even attack the nervous system in ways similar to this. Also, my HSV-2 Igg is only at 0.06 in a negative reference range of 0.0-0.9, almost a year after the possible transmission date - which means I really couldn't get a clearer negative test result for HSV-2. You have 1.25, which is a low positive, but a positive nonetheless.

Regards,
Jyddsteef


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TheOriginalScooter
Member since Aug-29-10
30 posts
Jul-07-11, 09:06 PM (CST)
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7. "RE: -"
In response to message #6
 
   Jyddsteef ~
I sent you a private message. Hope you received it.


Scooter


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Blue Moon
Member since Jan-9-15
1 posts
Jan-09-15, 07:07 AM (CST)
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8. "RE: -"
In response to message #7
 
   In the end, it took about a little over a year for the pain to begin to go away on it's own. There are still one or two days when it decides it wants to come back, but it is nothing like the torture I once experienced. The pain has diminished almost 100%. Talk about just dealing with constant pain and feeling uncomfortable and not really knowing what the heck is going on because no one really has the answer to give to you. I just hate thinking back to those days.

MooN


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