Doing the neuropathy decathlon
 

On Saturday a rash appeared on my rib cage where intense pain has been taking place. It took my primary 30 seconds to diagnose shingles and off I went with a pair of scripts.

I am confused as to how this patch freed up the prescription pad. Two visits ago we had it out over further testing and/or better(stronger) meds. I get the reservations on prescribing opiates, but I didn't even broach the subject and it was being written.

I must say- very helpful. Not an absolute solution, but it makes everything a bit more bearable.

I am hoping that the week without treatment doesn't lend itself to permanent damage. I have enough neuropathy already, seriously.

I can't determine whether it is worse than my diabetic pn, though being a new spot changes the field, so to speak. I do feel that if they remake Return of the Jedi I could pull off Luke writhing under the assault of force lightning from the Emporer.

I hope it doesn't get too much worse, though I am bracing for it.

Any suggestions welcome.

Jon

Is the rash major (heavy) or light relatively?

My husband's shingles were ghastly... all over his side and abdomen on the left, plus his ear canal.

He had some pain for 2 yrs after, in spurts, but nothing really lasting.

I on the other hand had only a few lesions down my right arm.
That side of my shoulder and neck have had many flares as the years have gone by. (no rash, but intense pain).

I think many PNers have had mild shingles, didn't get enough antiviral, and/or for some other reason, just get flares of pain.
It is called postherpetic neuralgia. The virus lives in the dorsal roots along the spine, forever.

You can bring it out with a diet high in arginine, or by taking arginine supplements. Using some l-lysine, 1 to 2 grams a day can put it also into a sleeping remission state.

Here is a food list of arginine/lysine food ratios:
http://www.herpes.com/Nutrition.shtml

If arginine gets dominant then that feeds the virus and signals replication, which then activates.

Because my shingles were an odd unusual presentation, I had blood work to measure the titres of antibodies present. And my Zoster was off the scale. My simplex, very very low.

Now that you have a diagnosis of shingles, your insurance will approve Lidoderm patches...which is a good thing. You might want to try them on your PN spots. (I've used them on the tops of my feet at times, and behind my right knee. They can really stop severe pain, if placed over nerve paths involving the pain.

So far it is a band of pain on my right side with a two inch or so lesion, however my physician believes that I will be developing the rash around. I called him and left a message about lidoderm last night- I had some at home, but they were expired.

It certainly is not fun, I'd say it is currently mild to moderate. When medicated things are bearable. I hope not to delve much further in the undermedicated waters. I felt like I was being stabbed through the ribs.

Thanks Mrs. D.

Jon

Shingles are very painful!! I pray they do not travel to your other side. I hope you are staying as comfortable as possible and recover quickly.

My hubby's were over 12 inches long down his abdomen, and around his back, and were horrible to look at! Angry red, and some even black. You have to keep that area clean with hydrogen peroxide daily to keep secondary infection down... so take good care of YOUR rash.

I had just gone upNorth with our son, for the summer. Hubby was to follow in 2 wks, after we got the house open and working.
He sent a message (this was before cell phones) to the marina, and said he was ill. His pain was odd, so he thought he had the flu. I got the message, and called him on a payphone, and immediately realized he had a big problem. I made him promise to go to my doctor, which he did... and the rest is history for us.

He finally showed up 10 days or so later...after the Zovirax and
Cefzil (antibiotic) for his ear. Our cousin didn't believe this situation....as she sadly is a mega manipulator and liar and expects lies from others (sigh). So when he did show up... she had a doctor with her (her latest squeeze) and they pooh poohed the whole story( like "sure" etc). So hubby raised his shirt, and the ghastly angry icky wicky situation was for all to see. Our cousin's doctor friend... drew back, afraid to catch it all himself, and that was the end of the weird family event. I learned alot about HER that day... what a PAIN she is! It was an unexpected learning experience. I don't really have much to do with her now...as you might imagine. LOL

Hubby now does not complain or have issues with his "shingles" anymore...so people do get better and go into remission even with a severe case like he had.

From shortly after 3:15 PM to 6:30 PM random rib cage electric jolts. I now understand why the hydrocodon was prescribed. Medicine plus a nap reset me.

I am keeping the lesion clean and I have not seen more to this point.

Ugh.

I'm ashamed to admit that I had no idea what was going on when I got them, and ended up driving to Canada and back with them.

Miserable, I was.

Still, I don't have think I had a severe case. I have no residual pain, but I do have some mild postherpetic itch on the nerve bundle involved.

Mrs. D, I like-wise had to "lift my shirt" at one point to show people why I was so miserable on the golf course. One woman said she thought it looked like shingles, but I blew her off.

Stupid is as stupid does.

I hope I don't have any residual, though I wonder if that 6 days prior to a rash (8 total with no treatment) don't increase that chance.

The rash is starting to form in the back. If you folded me in half I bet they line up.

I had no treatment at all and had little residual effect. Hopefully you'll fare as well.

It's a pity the urgent care place didn't get on it sooner, but I guess without a rash or flu-like symptoms, they'd have no reason to conclusively suspect it. Funny that MrsD picked up on it right away, though. :)

My rash was a sporadic band from my mid-back to my sternum.

Very sorry about this Jon. I guess that means you have not had the shingles vaccine. I have considered getting it even though I am only in my mid-40's. With PN though, I wonder if that puts us at an increased risk for contracting it since so much else is compromised with our bodies?

Mrs D, I would love to know your thoughts on this. I take l-arginine daily and was not aware of its connection to shingles.

I hope you are pain free very soon Jon.

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:

There is a test for EB.

http://www.healthline.com/health/eps...test#Overview1

Is PN a symptom of EB?

From this site I think it can.

http://www.healthline.com/health/per...athy#Overview1

The other site I gave says EB can cause infectious mononucleosis 35% to 50% of the time in adolescents and adults.

Viruses and their possible involvement in the development of MS is an ongoing research subject.

http://www.nationalmssociety.org/Wha...ses-MS/Viruses


....

I've read that before as far as MS goes.

Epstein Barr virus--
 

--AKA "everybody's virus" in that at least 95% of us have been infected by age 35 and will show certain antibody titres to it for life (like all the human herpes family viruses, EBV is not eradicated, but held in check by a proper immune system, generally lying dormant in the nasopharynx unless "reactivated" in times of immune compromise), has been implicated in some neuropathies, both in initial infection and reactivation scenarios.

The mechanism is thought to be molecular mimicry (which is thought to be behind a lot of autoimmune reactions); the pathogen has a shape very similar to some bodily tissue, and since much of the immune antibody reaction in done by shape--think key in lock--an immune system activated by such a pathogen may attack anything with a similar shape, including actual body tissue.

Viruses are not the only culprits here; there is strong evidence for certain neuropathies, particularly acute ones such as Guillain Barre, having a bacterial "infectious prodrome". In the case of Guillain Barre, a number of cases are known to have followed infection by Campylobacter jejuni and Haemophilus influenzae.

See:

http://neuromuscular.wustl.edu/antibody/gbs.htm

http://neuromuscular.wustl.edu/nother/infect.htm

http://neuromuscular.wustl.edu/senso...html#sfpnacute

http://powerhealthtalk.com/epstein-b...-the-facts.htm

I recently watched this on EB virus. Very timely for this thread. I also like all the references that are included under the video.

Brutal lightning strikes
 

Emporer Palpatine struck again last night. I was laying in bed. Thankfully the meds took the edge off enough I got some sleep.

At work I "looked like ****" according to a blunt, though friend category co-worker. She was right. Stressful morning. No hot water so no shower. My leg muscles need that blast. The mile pilgrimage from parking to work was... methodical.

I put in two hours, grabbed some comfort food and ambience and headed home. If tomorrow is similar I'm calling in. This is no worse than moderate on any scale I'd imagine, but it is crushing me. I have this sort of electric sensation in my calf/ankle area when I was on no and lower dosages of Lyrica. This location is brutal. That is the best way to describe it.

Surviving, not thriving,

Jon

Depends how severe your Shingles was, how long before you got treatment. For me, i had shingles when i was 20, it took me 7 days too late to get acyclovir, so i had permanent scarring,numbness,hypersensitivity, and the occasional jabs of pain in that specific dermatome. I also had meningitis for that whole 7 days as well. Neuralgias are much more severe than neuropathies.

For people with active shingles.... the immune system really
gets used up fast... When I had shingles, first I developed a cellulitis at the site on my arm, then I started the Acyclovir
and a few days later developed pneumonia (with a 103 degree fever) which required Zithromax.

So it is possible to get another infection on top of shingles. Be watchful and report any unusual fever etc, to your doctor. The shingle lesions can become infected with Staph, also.

On the couch- I called in. Restfulness is the only item on the menu for the next 72 hours.

72 hours will be good rest for you Jon.

I hope you feel better.

The electric pain in my rib cage is intermitent now and hardly passes my tolerable barrier. I still feel like I was stabbed in the back, low on the right side, intercoastal rib area. The main lesion is going pink.

My main source of consternation with shingles at this point is in the area the nerve broke out like like Alien. When I bend, stretch or move, basically I sound like a reject from "Finding Vader's breathing ailment" but I bring a geriatric three pack a day vibe.

I did some searching and my read is phrenico abdominal branch. I am going to hit the library on lunch at work. I have no idea if this is common, possible or I am off base on the nerve affected, but my right lung is weak.



and suggestions welcome. I am so glad (you know, not really) that this took place when I was strong. I see my neurologist on Friday, already scheduled, so I do plan on bringing it up then.

Staying strong in spite of a cat's tail of stinging lashes physical, emotional, mental.

Yours in numbness (humor has been on the rise as a coping mechanism)

Jon

Try icing it... 20 minutes with a thin cloth between you and the ice pack. I find ice very helpful.

90% free of symptoms. Those that echo feel like they grow fainter. It was funky to transition back to the "normal" neuropathy. It was deflatibg at first. But I am adjusting.

This is probably left better for a different thread, but does anyone have experience with using Lyrica and Cymbalta to battle symptoms? I have enough fatigue & really don't want to try it, but it is next step. I am inching closer to needing better control of my symptoms and my diet is rather tight. I am altering it further to attempt to help, but I am slipping.

Thanks,

Jon

On the lighter side :)