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Old 04-23-2011, 10:44 AM #11
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Two eggs with yolks should do it for you.
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Old 04-23-2011, 01:49 PM #12
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Quote:
Originally Posted by drswami View Post
Mrs D,

this is very interesting. i have had HSV-2 since 1979, initially the burning pain i got was similar to what i used to experience before getting an outbreak of herpes. since developing PN i have had very few outbreaks of herpes. this could simply be because i am generally healthier. i asked the Neuros about HSV-2 being a part of the problem and they said no. i couldn't find much on the net about it either. do you have any more info?
DRSWAMI
I too have HSV2 (also since 1979). I now have PN and Erythromelalgia. The ERY was just diagnosed by the head doctor of the pain clinic at UW. This particular doctor made special note that I have HSV2 among other things. He is currently doing extensive blood tests, etc. I don't have a follow up visit until mid-July so will report more on this topic later should he.

I too am experiencing similar nerve pain to the kind I used to get before each outbreak so naturally I believe that this long term HSV condition has contributed to my current diagnosis. My outbreaks of HSV used to happen with my cycle each month, I was almost not ever free from this crippling condition. Once Acyclovir was on the market I began taking different forms of it and I did get good relief. Went to just a few outbreaks a year, which was good.

Now I worry that long term use of Acyclovir could have poisoned my system leaving me with this horrible and incredibly painful condition. Of course I have no proof yet so if it is confirmed I will definitely report back as this could be affecting many.

I would love to hear from others who have lived with HSV2 and now have PN. This would be good supporting information I could take to my doctor on my next visit. I think the doctors can use all the help they can get, hope they feel the same way because I am all about gathering information.
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Old 04-23-2011, 02:39 PM #13
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It is really possible your HSV is activating and causing grief.

I would be taking L-lysine if I were you. We both use it at home for our shingles pain...which both of us got last week! Spring seems especially difficult for us.

I haven't seen the Acyclovir or Valcyclovir showing up on PN lists.

But the HIV antivirals have been known for a LONG time as causing PN.
Some are on this list:
http://www.wrongdiagnosis.com/n/neuropathy/subtypes.htm
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Old 04-23-2011, 09:31 PM #14
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mrsD
Many thanks for your response, your reply gives me hope. If you wouldn't mind answering a couple more questions I would really appreciate it but let me first say that I am very sorry you are suffering with Shingles. I know how very painful it is. I hope you feel better soon.

A little background: Early on I did take Lysine but since it didn't help keep the "attacks" away I assumed it didn't work and I have just never gotten back to it. I bought some today and will start immediately. Also, when I can tell I am about to have a Herpes outbreak I up my dosage of Acyclovir which in my current condition is most likely exacerbating all my symtoms. That has been the situation this week and I have been in terrific pain this week.

1.How much Lysine do you recommend per day?
2.If you were me would you wean yourself off the Acyclovir?
3.If this is the cause of my PN and Lysine helps, do you think my symptoms will go away and or improve or once damaged it's too late for help?

Even if it doesn't help it sounds like I need to get off the med's.....it's funny (not ha ha) now looking back to when I first started this med, I remember asking the doctor if this drug might have long term side effects. I was convinced it was safe to use. I was kidding myself but I was in so much pain several times a month due to the Herpes that I would have believed anything.

I specifically asked two doctors if they could attribute my PN to long term use of Acyclovir and both emphatically said NO. No discussion, no nothing, just no the med's do not cause this.........I'm more than a little frustrated with the medical community. I will take the information you provided me with to my followup with my new "pain" doctor however I don't see him until mid July. Ugh!

I cannot begin to tell you how much finding this "site" has meant to me. I will be forever grateful. mrsD, you are like this little guardian angel just hovering over everyone trying to make sure we are all going in the right direction. I haven't yet begun to fully understand my condition but at least now I a place to go for help.

Please take care and my prayers are with you all.
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Old 05-16-2011, 10:52 AM #15
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I need a clarification:

Does shingles cause permanent nerve damage? It sounds like the virus causes inflammation, which in turn causes symptoms, but not necessarily permanent nerve damage. Granted that you can't get rid of the virus once you have it, but, if there is no damage to the nerves beyond acute inflammation or irritation, then that gives me a different way to think about this.

Thanks.
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Old 05-16-2011, 01:11 PM #16
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My understanding is that untreated shingles, may result in nerve damage. In fact there is no guarantee that treatment may prevent damage in all patients.

The Herpes Zoster virus continues to live in the body, forever.
It can activate if the immune system keeping is dormant changes, as in Chemo, or infections like pneumonia. It uses l-arginine amino acid to replicate. So high unbalanced arginine is thought to provoke attacks.

It lives in the dorsal root ganglia along the spine.

My shingles came from the stress of working midnights. It took a year of this shift work to result. Hubby's came from a hornet sting. A week after the sting, he had a severe case of shingles.

I personally believe that some PN's and other chronic pain may be traced to viral activity in the dorsal root ganglia. My shingles area was activated by a muscle massage... I couldn't move for 3 days, my neck was so sore, and my arm! I did not get blisters that time, but boy, the pain was horrific!
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Old 05-30-2011, 07:01 PM #17
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Man, I'm burning up. Don't know why my symptoms have taken such a turn for the worse these past two months, but they have.

I've been eating well and sticking to 45-60 mins. of exercise (walking or bicycling) each day. My sleep is not too bad, considering that insomnia is as likely as not. And I've been staying with the supplements.




mrsD, you say untreated shingles may result in nerve damage. What treatment? Valtrex or such like?
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Old 05-31-2011, 05:16 AM #18
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I would get tested for both Herpes viruses, to see if you have elevated levels.

Yes, Valtrex may help. Have you tried using cold packs along the spine? That often helps too. 20min tops in one area though and protect the skin. I typically do twice a day if I have problems that I think are shingles related.

If the supplements are not working at all for you, I'd stop everything for a while and see what happens. We are having heat in most of the country, and I know my feet are not doing well this weekend either.

I'd stick with the lysine however, until you get tested.
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Old 05-31-2011, 10:48 AM #19
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mrsD, I've been tested for Herpes. I did not produce a positive test for HSV-1 or HSV-2. After I developed some neuralgia, they decided it must be Zoster. However, none of my neuralgia symptoms were exactly typical of Zoster. Two years later, with weird symptoms showing up, like foot pain, I was diagnosed with Small Fiber Neuropathy.

I need the magnesium for foot cramping. What dose of lysine do you suggest? In the past, I have seen you suggest 500 mg, then, in other cases, up to 3000 mg.

Thanks!
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Old 05-31-2011, 12:16 PM #20
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Start at 500mg a day and see if you feel better. Give that a week and then increase to 1 gram a day, and do that for a week, and see if there is any improvement. Sometimes the improvement takes a while, and may occur at lower doses. But some people do go up to 3 grams a day in some cases.

Some only use the higher doses for symptoms, and lower doses for coasting in between attacks.

When I had my Herpes tests, they did both simplex together, and a separate one for zoster. It was my Zoster titres that were really high, and nothing much at all for Simplex.
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