Grouppe Kurosawa: HIV - Letters From Blanche Vol. 2, Part 1 (print)

Letters From Blanche
Vol. 2, Part 1

12.12.2004
Dear Dr. Steve:
Argggh. Bad news. I've been saying all along that the rash wasn't shingles because it was nothing like the last time I had the fun & games of going through that. Well, it's morphed and shingles it is indeed. I was beginning to wonder because I kept getting new outbreaks as the old ones faded.

Last night I woke up with my butt a mess of itching burnin lumps. Shingles. This was so reminiscent of the first round that it was uncanny. I'm also developing a nice crop of bumps on my shins, another on my lower back. The forearms look like something out of the plague -- really unpleasant, and I hate to cover them 'cause it's hot.

I shouldn't be surprised that the darned things fooled me; last time it fooled me, several GP's and three dermatologists. It was my Infectious Disease specialist that took one look and said, "oh, herpes!" Not

especially comforting for somebody with a serious STD already. This isn't actually an STD of course, it's The Revenge of Chickenpox, with some help from the HIV.

The scary thing about this is shingles, especially a second outbreak, is often caused by "a compromised immune system" and I'm due for my first blood test in July. Now I'm really nervous.

Already using cortisone topically (not a great help) and the Tagamet. Any other suggestions before I itch all my skin off? I could use immediate help with the actual skin problem and long-term assistance with the shingles in general. – Blanche

Dear Dr. Steve:
Hi again.

Just an update. Yup. Shingles. Will be taking Famvir; hope it does not conflict with anything else I'm taking because Famvir is the only one that works on an established outbreak. Acyclovir is a lot cheaper but

useless at this point. At least this explains why my reaction was so different from your other clients. The Inosine may well never have even been a real factor, although I'm still waiting to stop itchin' before I

start taking it again -- better safe than sorry! It's all just weird timing...

Also found out something very interesting. Both the hubby and I have been looking all over the internet for interim treatments, topical help etc. for the shingles and he discovered that the last, the very last thing a person with a history of Shingles should be putting on his/her body is cortisone. This has nothing to do with being HIV+; just cortisone and shingles. He found this is many different places including the Famvir website itself. Imagine that! In fact corticosteroids can _cause_ shingles outbreaks in those prone to same. This never would have occurred to me. However, it may mean that putting cortisone on the minor problem may have turned it into a major one, since it did turn out to indeed be shingles. Okay, I lied; I was sure it was something else. Sorry. In my case shingles doesn't exactly behave like... well... shingles. This was the first problem I had five year ago, and nobody, including three dermatologists, could tell it was shingles.

This reminded me that I have had four -- yes, four (two in the medial and two in the lateral plantar nerve) -- cortisone shots in my right foot because of this neuroma thingie (didn't work anyway!). During the

time I was getting the shots, I noticed a little itching on the forearms but it was never serious. This was a while ago and I naturally didn't think any more about it. Then this business started. I think I may never use cortisone again.

At any rate, that actually gives me a bit of hope. Maybe my immune system is fine and I've just been corti-oned! Of course I've been just plain "zoned" for a long time. Now if I can just _calm back down_ before my blood test, we'll see. I must admit the news it was shingles was a bit frightening. -- Blanche

Blanche,
Yes, cortisone compromises the immune system. Another factor is nitric oxide. Nitric oxide is a factor involved in fighting viral and other infections, and all the anti-oxidants you are taking are meant to do just that. They are working. Unfortunately nitric oxide can activate latent herpes infections. This has nothing to do with a suppressed immune system. Question, do you eat lots of nuts? Nuts can contain a large amount of the amino acid arginine and arginine is directly converted into nitric oxide.

I'll send you some info on this today. Certain foods promote herpes outbreaks.

Steve

Dear Dr. Steve:
Not a lot of nuts. As I mentioned, I had four stooopid cortisone shots in as many months trying to deal with a neuroma on my right foot. I didn't realize until after the deeds were done that cortisone shots were probably not very wise. I think that's what set the whole mess in motion.

The Tagamet is helping to keep the itch under control, but every time it would start to heal I'd assume that was the end, then I'd get really pissed off when a new set of bumps would appear. I look like a plague victim and am really eager to lose the pocks on my forearms, which itch and look goshdarnawful.

Since I seem to be herpetically prone, any advice on heading these buggers off at the pass is most appreciated. -- Blanche

Blanche,
Lysine cream. You can find it on the net. It’s used on herpes lesions. It counteracts the effects of the amino acid arginine which promotes viral expression. I'll see if I can find it.

Steve

Dear Dr. Steve:
Lysine cream. I'm on it. Also, forgot to ask: what about peanuts? I do eat peanut butter occasionally. – Blanche

Blanche,
NO peanut butter. Peanut oil is OK. Look on the list I sent you. I checked the databases and lysine cream does work. It isn't a scam. There are hundreds of companies selling lysine cream, all apparently from a company called Nature's Answer.

Keep me informed.

Steve

Dear Dr. Steve:
Okaaay. No peanut butter. However, I never received a list, unless it was an attachment that wandered off. Where should it be? -- Blanche

Blanche,
I forwarded a document to you. I'll forward it again.

Dear Dr. Steve:
Okeydokey. Actually, Stanley found some lists on the net and we're trying to follow them. They may not be as thorough as yours but are something, anyway. Lysine good, arginine bad.

Just got the Famvir. I'm probably expecting too much of the poor stuff, 'cuz here I am waiting for the pock-ettes to suck up and dry before my eyes. See, I had Shingles the first time for over six months. During that time, we basically cured several brands of pneumonia and put a sincere dent in the HIV, but hadn't done fuckall for the rash from hell. The Famvir did wonders.

I should say that I seem to be putting up a much better fight this time than last. I guess having an immune system will do that...

Can't find the lysine cream locally, at least not yet, so am relying on Aspercreme. Actually, although I'm still getting new bumps here and there, the itch has pretty much gone away, so I guess I'm winning, even before the Famvir. Also, the bumps don't get very serious and fade quickly -- if I can keep my mittens on, that is. That's comforting. I'm not even using the Tagamet right now, although I am definitely not losing track of it.

"Go figure" department: I woke up this morning with an incredible desire for peanut-butter-and-jelly toast. Haven't had any in months, as best I can recall, and didn't care until I couldn't. Now I pine for p.b. -- on really good toast with all the nuts and seeds in it, naturally. Had yogurt instead. Why is my appetite so perverse? -- Blanche

Dear Dr. Steve:
Blanche, GOD is testing you. It’s called the peanut butter dilemma. Just when you crave something the most, you can't have it. If you cross the line and give in to your impulses, you will have heat rash for the next six months. Be strong.

PS There is nothing wrong with your immune system. You are stressed, pure and simple. So would anyone.

Steve

Dear Dr. Steve:
The Peanut Butter Dilemma. Yes. Don't worry; I shall be strong.

Dear Dr. Steve:
Just thought I'd let you know I never did get that list. Whatever you're doing isn't working, I fear. This is just an FYI; I think I have enough info to be getting on with, but I thought you should know that your list-sending isn't sending, or whatever.

Have taken one entire Famvir and I swear I can feel the little buggers drying up. What an imagination the woman has! -- Blanche

Dear Dr. Steve:
Starting third day on Famvir and oh yeah!...the bumps are shrinking, although I still look pretty ugly. Also gettng a little post-herpes neuralgia this time -- feels like somebody sneaking up and sticking me with a pin at random moments and locations. No worries. Pain I can handle; it's itching I can't cope with! Trying to be good and not pick.

Sure will be glad when this is over. I don't particularly like ugly red itchy bumps, and the entire syndrome leaves me twitchy and irritable. What really irks me is that I should have seen this coming 'way back and

taken steps -- maybe thrown a good fit -- before it got the best of me. I was under some pressure and for some odd reason was trying to be NICE . Since I'm not a particularly nice person it didn't work. By the time you hit 58 years old you think you'd know better. Darn.

Going in for first post-kocktail blood test next week. I'm really curious to see what the numbers are, especially with the Shingles and all. Am determinedly thinking happy thoughts. Keep yer fingers crossed! -- Blanche

Dear Dr. Steve:
Lysine cream stops the itch INSTANTLY! Pretty neat, athough it comes in these little wimpy tubes and I've got enough Shingles for a small roof (maybe a shed). This means I only put it on a couple of "test spots," where it is doing wonders. May need to find the Econo-Tube.

My only trouble now is a sincerely horrible creeping nausea, which is making it nearly impossible to eat or keep anything down. This applies especially, alas, to the kocktail, which has developed a nasty tendency

to bounce. The source of the problem is, apparently, the coconut. Twice I've had to settle for a handful of curcumin & egcg in capsule form, because I couldn't even make myself swallow! This is obviously not a

long-term survival plan. What to do?

Famvir can cause nausea, but most of the commercial products state clearly "not for use with chickenpox." One must assume that implies Shingles also. I am aware that compliance it at the heart of any successful protocol, and mine's currently in the Bathroom Bowl. Any advice for the temporarily swallowing-impaired? -- Blanche

Blanche,
Hows it going, Blanche? Feeling better? When is your blood test? Why do you live in Phoenix in 110 degree heat? Who invented liquid soap and why?

Questions, questions.

The Horrid One

Dear Dr. Horrid:
Lysine cream is wonderful; does a good job on the itches. I think the Famvir is clearing the bumps away, but some of them are pretty well entrenched and fairly deep. Also, as I have said, I'm a picker, and this

is impossible to curb entirely, especially in the wee small hours when I am neither here not there, as the saying goes. I wake up picking.

I don't seem to be growing new bumps any more, a development greatly to be praised. The last set wandered up the... well... the crack of my ass, basically, on either side. Luckily these never got as humongous as the ones on my arms and the backs of my legs; this is just not a happy place for a shingle!

However, I've got itching drying bumps all over both forearms that are drying and pulling and itching and looking ugly. So feeling better but still more progress needs to be made. The lack of new bumps is a

happiness. Alas, the Famvir gives me nausea (fairly common with Famvir) and that is making it very hard to take the kocktail. For some reason the smell of hot coconut is just not making it. I have been forced on

two occasions to drop a pile of caps instead, praying there's enough absorption to do the job. Any advice on that one? Even though that's a serious problem I expect it to be a short-lived one and go away when the Famvir does.

I was going in for my blood test when I went to the podiatrist on Thursday July 1. I have unfortunately been forced to cancel that appointment because I'm still ugly, uncomfortable and fried arms hurt! I think it would be considerate to wait to get the blood test until the lab person doesn't need a full set of armor to stick me. (I have _leaking_ bumps on both arms!) I need one of those bells I can ring: "unclean... unclean..."

The good part is that I have convinced Stanley to do both the cooking and the dishwashing for the interim. I get dried blood under my nails when I scratch too enthusiastically and don't really want to boil my hands. It's an ill wind...

I live in Phoenix at 110 because that's where the dart landed. I lived in Chicago before that. Phoenix, even at 110, is demonstrably better. I normally have no problem with the Summer weather. This year the neuroma business kept me indoors too long to be properly acclimated, so I'm in difficulty. Soon the monsoons will hit and then it will be incredibly nasty around here. Then it all goes away for another year. You get used to it.

I'll have to research the liquid soap issue. Maybe because it's harder to slip on a pump bottle in the shower?

I haven't heard any news from your end in quite a while, since I've been doing the itching red bump boogie, I guess. How's things? How’s other things? -- Blanche

Blanche,
This word of mouth stuff is making me a very busy person, both in respect to cancer and HIV. I have GOT to get the new web site up and soon or risk going more insane than I presently am. We are going to put discussion groups on the site where people can talk to one another about various specific diseases. I can post messages that everyone can read so I don't have to repeat myself all the time.

See what happens when you go against your own emotional nature and try to be NICE . Good idea, get rid of the shingles before the blood test.

Yes, the weather in Chicago would be worse...maybe.

Steve

Dear Dr. Steve:
Trust me. The weather in Chicago is always worse. There are two seasons there: winter and August. Everything is very dirty and people vary from distant to dangerous. Phoenix is sooooo nice. The bad parts here are better than the good ones _there_. Honest. And it's only hot for a little while.

I think an interactive website is an excellent idea. This will probably save you buckets of time answering the same questions with every new client. Do up a good FAQ. The discussion group sounds like a winner. I'm willing to bet that your clients are all -- well, mostly -- literate and articulate. Many will have already done the research needed by others. You may actually have time for a life of your own (what a concept!) You will probably need to set up an alias for the correspondents, especially the HIV cases. We tend to be shy. Actually, we tend to not want to be run out of town on a rail, or have people scream and run if we touch them. People can be real idiots and I for one shudder at the thought of depending on their education or sense of fair play. Hah!

Yes, being nice can be a real mistake. I had, actually, a fairly good time last week going terminally nuclear bugfuck on everybody who was making me feel the least bit crowded. I seem to have gotten my little way on everything. Scary. Nice, but scary. I'm not letting down my guard, however.

I wouldn't worry about going more insane. There is bound to be an upper limit. – Blanche

Dear Dr. Steve:
Saw the Brando obit and thought of you.

Pocks are healing but still ugly. Patience, hell! Feeling much better. Nausea abated and back on kocktail (only missed a couple and DID take caps; hope that is adequate, since barfing orange ick all over the rug

didn't seem very productive).

That Lysine cream is not cheap, but it certainly does the job. Too bad I've got about 15% of my skin involved in this mess and just can't afford to slather it everywhere (I've got quite a bit of everywhere). Am concentrating on hands and forearms so that I can at least go out in public without getting stoned (or Looked At Very Strangely, anyway).

Still not taking Inosine, even though I'm not sure it was the initial culprit after all. I still itch at night in some of the most unfortunate places, although the bumps have stopped cropping up. I guess it's just the whispering itch that my mind covers over during the day, but arggggh!

Any advice on long-term management of Shingles? I'm going to apparently have to deal with this now and again. I have a lysine/arginine list. Anything else? -- Blanche, of course

Blanche,
If coconut milk is a problem, you have other options that do not involve taking useless caps orally.

You have a tons of latent and non latent herpes virus in your system which isn't going away quietly. Asking you to stress out is probably a waste of time since you are essentially insane, even on a good day. In a good way, but nutso anyway. If you want to minimize the effects of stress hormones on shingles, go back on the melatonin protocol, three times a day.

Watch your diet first and foremost and then your stress level. Melatonin can take care of that, but not your diet.

Steve

Dear Dr. Steve:
Easy come, easy go.

Coconut milk not usually a problem. The Famvir upset my little tummy, and I was doing the best I could with what I knew. Only had to do this twice. Perhaps it would be a good idea to tell me what else to use for a "solvent" if this happens again. So tell, please? It might be nice to have some alternative if a problem... uh... comes up... again.

Actually nutso works most of the time. I'm usually too insane to be stressed. This has been an unusual time in my life. I think I've gotten that all under control by kickin' butt. (Felt reeeeeal good!) I think I'll start increasing the melatonin -- slowly, 'cuz I'm chickenshit. – Blanche

Blanche,
I already told you. First heavy cream and then half and half.

Steve

Dear Dr. Steve:
Thanks. I normally have a cast-iron stomach, so no worries. I'm just the kinda girl who likes to be prepared. And no, I was never a Scout. – Blanche

Blanche,
Get over the shingles and get your blood tested. It’s important for you and a few million others.

Steve

Dear Dr. Steve:
Seriously workin' on the shingles. Blood test on the 19th. Film at eleven – Blanche

Dear Dr. Steve:
I think I mentioned that the Lysine cream works great, but it is rather expensive. I note that Lysine Supplements, on the other hand, are quite affordable. I also have read your recipe for making a topical analgesic for arthritis, for instance. This leads me to wonder whether there might be a way to extract the lysine in a similar fashion to the ibuprofen process. My first concern is that it is alcohol extraction, and Shingles, for instance, often involves open sores. Alcohol and open sores don't seem highly compatible to me. Ouch! Will the aloe gel make the difference? How about glycerine extraction? Can lysine be extracted and compounded this way? Am I all wet?

FYI: It does not appear you ever told me about the cream. The only reference I have to either cream or 1/2&1/2 is from the Great Egg Yolk Attempt: "Put one egg yolk per coconut milk/supplement dose in the

coconut milk. Mix thoroughly and add the curcumin, etc. Mix thoroughly again. Boil and let cool and dilute with 1/2 and 1/2." I can find nothing where you say either cream or half-and-half is a reasonable SUBSTITUTE for coconut milk. And yes, I have every email we have ever exchanged, just in case a data item might be important later on. You could be kidnapped by Gypsies, and I'd be on my own. A search for "1/2 and 1/2" and "cream" found only this one instance.

I wonder how many other clients might benefit from that info? My hubby, for instance, is currently negative (what a bummer to be using condoms at nearly 60 years old!) but kaka occurs. He cannot abide coconut and would never be able to keep the kocktail down. Goodbye, Columbus . The cream would be do-able. That would be a good factoid for your new website. It would prevent stupid questions like mine, huh? -- Blanche

Blanche,
Lysine is freely water soluble. If you can find caps, dissolve them in hot DISTILLED water and mix with common aloe vera gel. Good idea. I hadn't thought of it.

EGCG, etc can be dissolved in any hot oil, whether its olive oil or hot coconut milk. BUT, coconut milk contains lauric acid, tons of it, and lauric acid and HIV don't get along. This point will be covered in the new essays.

Let me know how the Blanche lysine gel works. If it works, I'll put the formula on the web site as Blanche's Topical or something along those lines.

Steve