I'm the Exception to the HSV2/PHN Rule!

[gingygirl]

Hi, I've had chronic HS2 and intractable PHN for 31 years. I used to have outbreaks every couple of months, but now I'm having 2 to 4 outbreaks a month and can longer distinguish between one outbreak and the next. I no longer take Valtrex (please read below), but I am using Duragesic patches for the PHN in addition to Zovirax ointment and Lidoderm patches. I've just finished a Medrol Dose Pak to break a pain cycle I've had almost 4 weeks now. Believe me when I tell you that I've seen every specialist and tried every medical treatment and drug available. It is impossible for me to find treatment for my very uncommon case of HS2 and PHN. I believe I have a drug-resistent strain of HS2. By drug resistent, I mean that I was taking Valtrex for suppressive therapy (at initial-episode doses) which prevented almost all outbreaks, but I always had the PHN. I would stop taking Valtrex just so I would have an outbreak for pain relief. I have researched the internet for many years trying to find studies, specialists, latest developments in treatment, support groups, research, and information on hard-to-treat cases such as mine. I would love to communicate with other sufferers who are going through the same difficulties I am. My PCP has been the most helpful in treating me to date. He takes me seriously and is always willing to meet with me and read anything I can find on my virus. There are so many doctors out there who have totally dismissed my plight because they just don't know (or have never seen) what I'm going through. I'd like your help with any information you can provide me for treatments available for really difficult cases such as mine. I've recently read about administering antivirals via IV or trying different antivirals. This disease has not impacted my quality of life but has become my life. I am unable to work because I cannot wear normal-fitting clothing and am in chronic pain. I thought there might be a correlation between my virus and a recent diagnosis of hypogammaglobulinemia, but I cannot find anyone to confirm this. I had immune globulin infusions for a year that didn't help. The infusions were not for the HS2 virus, but I was hoping that raising my antibody levels might help. Last week I found an informative artcle written by Stephen Sacks. I sent him an email which was returned to me when I discovered (in horror) that he died in 2003. I have written to the Infectious Diseases Department at the University of British Columbia (where he worked), but I have not heard back from them. In November 2005, I had a blood test that confirmed I have been exposed to the virus. I have a call in to a dermatologist I saw for many years because I think he did a culture. There's no doubt I have the virus. Do you suggest I have more blood tests? At this point, I am feeling very desperate for help and am looking forward to your reply. Thank you.

[H. Hunter Handsfield, M.D.]

I feel for you; clearly your health and lifestyle are seriously affected by your neuralgia.  And certainly there are plenty of stories like yours, i.e. people with neuralgia symptoms that they (and their doctors) believe are due to HSV-2.  And they may be right.  However, no credible research has proved that the one causes the other.  A quarter of the population has HSV-2 and some people have unexplained neuralgia, so there are bound to be people with both problems, simply on a random basis.

Assuming you had a positive viral culture for HSV-2 somewhere along the line (when you were having overt herpes outbreaks), or if your recent positive blood test for HSV-2 was with a modern, type-specific test, you can be certain you are infected.  (A positive blood test does not indicate only that the person was "exposed".  It proves s/he is infected with the virus.)  So I see no need for additional testing.  However, if didn't have a positive culture and you're not sure whether a truly type-specific test was done (e.g., the HerpeSelect test), you should ask your provider about the possible need for repeat testing.  (If in doubt about this or to learn more about HSV antibody testing, search the STD Forum threads for "herpes diagnosis" and "HerpeSelect test".)

The death of Steve Sacks, a close friend, indeed was a terrible blow to everyone in the herpes field.

Best wishes-- HHH, MD

[vpsingh]

A related discussion, herps was started.

[vpsingh]

A related discussion, treatment for herps was started.

[pearl2]

Wow! Sad to say, I was relieved to read your post. I was infected with HSV2 about 13 years ago. My first two outbreaks resulted in meningitis and 2 hospitalizations within one year.  After the second outbreak, I began to develop neuralgia symptoms.  None of my doctors seemed to think there was anything to treat.  I was also diagnosed with hypogammaglobulinemia, and went on IVIG treatment. My pain symptoms worsened until I couldn't put my left foot on the floor. I then saw a neurologist who began to treat me with neurontin, etc.  I am much better now, but I take a lot of meds in order to function. I've found a balance between the amount of pain I can tolerate, and the amount of meds I can tolerate.  Neither is perfect; I'm always in pain, and I take more medication than I would like.  But  it is the best I can do for now.  The whole left side of my body has been affected, where originally, the pain was in the back of my leg and foot.  I have pain from my left eye, left arm, hand, leg, etc. I also have decreased sensitivity on the surface of my skin on my left side, and areas of total numbness.

I can tell you that I have found articles linking PHN and hypogammaglobulinemia,  The suggestion was that hypogammaglobulinemia may result in more severe, prolonged, and frequent herpes outbreaks, thus leading to increased incidents of PHN.  Most of the doctors I've been to are of the belief that I might have a zoster (shingles) infection, in addition to HSV2.  They have insisted that HSV2 does not cause the type of PHN I have experienced. It's hard to know what to believe.

Regarding IVIG treatment, one year may not have been sufficient. I still had abnormal tests (lymphocyte proliferation) after one year.  After four years, my tests came back consistently normal. I recently had another battery done.  10 years after my last IVIG treatment, my immune system functions normally.  That has not helped my pain level, or changed my outbreaks, but I am certainly healthier, and do not get the kinds of illnesses I had previously been prone to (pneumonia, throat infections, ulcers).  

I do know what you mean when you say that this illness, the PHN in particular, has become your life.  I often feel that way. It's hard to function properly when taking pain meds.  I don't know if this will help you, but what I've done is accepted that I will live with a modicum of pain at all times, and that I will only medicate myself to achieve a lessening of pain. I no longer strive for elimination of pain. I do all I can to maintain mobility.  Yoga and strength training have helped a lot.  Doing yoga in a hot room is particularly helpful. Cold makes me miserable. Very few people understand what this is like.  I'm so glad I'm not the only one!