The vaccine reduces the risk for people 60 and older by about half. They haven't really reccommended it for people 50 thru 59 as of yet. For that group certain criteria is considered.

Antiviral medicines work really well for most people who get shingles (taken with 3 days). It worked great for someone I know. That's what would be done if the person ever got them again. No vaccine. There can be side effects from the vaccine.

If you take arginine daily--- I strongly suggest you add l-lysine to that.
In a dose just above the arginine one. Lysine is easy to tolerate and not that expensive.

I saw many patients in long term care develop shingles within a short time of starting arginine supplements for bed sores. (Arginaid powder was the most common treatment for those sores at the time.)

Thanks Kitt!
That is very helpful. My doctor does not recommend it at my age but then again, he admits he knows little about PN. After what happened to Jon though, I wondered if it might make sense for those of us under 60 and even 50 with PN disorders to get it sooner.

Thanks Mrs. D!
Should lysine be taken at the same time as the arginine or are they usually taken separately? Or, maybe it's better to discontinue the arginine.

It doesn't matter about the timing of dosing.

Lysine is very effective at suppressing viruses. In fact, cats as kittens often have a feline herpes, and the vets now give lysine for that. It is a very common virus kittens catch from the mother or other cats, and used to be called a "cold"... but they now know it is part of the Herpes family. Two of our recent kittens had it when we adopted them, so they got the lysine then. I just sprinkled and mixed it into their food. Bingo ...a fast recovery.

If that arginine is not doing much for you, I'd stop it. But take the lysine anyway, in case your PN is viral in nature. It would be an interesting result if you improve on lysine! A learning experience for others here too.

I just wanted to chime here since the discussion seems to be relevant.

When I first started having problems, my GP immediately recommended a neurologist down closer to Baltimore. As it turns out, he's the head of neurology at one of the hospitals there, and there was a six month wait to see him. The hospital is not Johns Hopkins, but he has rights there. I tell you this just because he is very highly thought of around here, and was voted the top neurologist in a Best of Baltimore Top Docs issue.

When all the testing he did failed to turn up anything, he diagnosed SFN and recommended I go see another doctor down in suburban D.C. He said the cause of my neuropathy could be viral, specifically mentioning herpes zoster and Epstein-Barr, but it's not well understood. This doctor in Rockville who is a Pain Mgt/Alt Med kind of guy apparently has some kind of home cooked treatment for viral issues. His website specifically mentions treating Chronic Fatigue Syndrome.

Unfortunately he also takes no insurance and is appointment by cancellation only. It's $350 to walk in the door, and I understand any treatment he prescribes is expensive too. My neuro didn't fully understand what his treatment was, but said it somehow kick-starts your immune system to start fighting the virus as it did in the past.

I did some searching on the Internet looking for ANYONE who had success in dealing with neuropathy from this viral angle, and found nothing. I never followed up on his recommendation just because of all the logistics involved. I instead sought out an Integrated Med doctor who was closer to home. No results there.

Anyway, I'm just throwing this out there that a highly respected neurologist put the viral possibility out there. He was especially homed in on this because the strange neuro symptoms in my left leg started back in the 80s after a bout with mono. (It was maybe three years after mono, though, not immediately.)

I would eventually start taking lysine because, as Mrs D mentioned, its given to cats for herpes suppression, and my cat does indeed get it because it helps tremendously. No luck with me, though.

If it ever comes to pass that they discover the root cause of many cases of idiopathic SFN is activated herpes zoster or Epstein-Barr, I'm going to feel like a total idiot for having not listened to the neuro.

But Mrs D, if you've lasted this far into the message, I know they can test viral load of things like HIV and HepC. Can't they check viral load of HZ and EB? I know we all likely have antibodies to both, but can't they distinguish that from an active infection?

I think there is a test for EB.... and I know there is a test for Zoster because I had that one.

Because my shingles were an unexpected presentation, my doctor tested my antibodies to both H. simplex and zoster.

I had almost no simplex...and was off the high end report for zoster. (my doctor said she has never seen a person with so little simplex, and most people test very positive for that one. I have never had a cold sore, etc).

I had mono in college, a severe case. So I suspect I have elevated EB too. When my right arm starts to hurt, I start the lysine, and it seems to help.

Perhaps you didn't take enough? Some people take several grams of it daily. For my little kitten the vet suggested 100mg in food twice a day.

Thanks for all the ideas. I plan on reading more after I get home from work. I have limited time off left due to taking a few hours here and there due to my regular flavor neuropathy. A few hours here or there over years whitles down the time fast.

Stress=awful. My rib issue kicked up this morning when I had to say my piece on a subject, it got heated, my silver tongue appeared, so it goes.

On the nerve near my ribs/lung- if that doesn't resolve when this runs its course I am going to in some regular discomfort. The sound I make was probably on George Lucas' rejection list for Darth Vader breathing noises. It is discomfort more than pain, though that accompanying zap makes what happens in my legs and arms seem, well distant.

I am centered now, though. A few hours to go after my lunch ends. Then my ottoman, me, my boy jabbing me in the ribs and a rictus grin/grimace on my face.

I think this case would be considered mild to medium. My primary brought up Lyrica might be helping me cope. I don't doubt it. The only thing that touches the zap is the hydrocodone, though.

Again, thank you for ideas.
Jon

Thanks, MrsD. I can't help but wonder why my neuro wouldn't have ordered the viral load test if he suspected it.

Good suggestion on the lysine. There's no reason not to.

My mono was also severe.

Here I am with a bottle of lysine. :)

With all of my supplements, I am surprised I've not tried this one but there is a lot of data supporting Ca absorption in osteoporosis so if for nothing else, I will try it for that and hope it also helps with NP which I do believe is viral/inflammatory in origin.

I just need to determine the dosage and will leave out the arginine for now.

Thank you Mrs. D. :winky: