Grouppe Kurosawa: HIV - Letters From Blanche Vol. 3, Part 1 (print)

Letters From Blanche
Vol. 3, Part 1

12.13.2004
Dahling,
How’s by you? Is the itching gone for good yet. Any changes in physical condition, etc.

Feedback, dear.

Steve

Dear Dr. Steve
May just live, after all.

The itching appears to be over. I'm still somewhat raw and tender in personal places, but so long as I wash after a bathroom trip things seem to be healing.

Melatonin is wonderful. I actually sleep at night sometimes now. I must believe this is making a difference; nothing is quite so stressful as being up and down all night in pain. It totally wipes me out, so it's a blessing that appears to be over.

The remaining lesions (all the old biggies) are taking forever to heal. My right forearm is still an ugly mess, and that's where the thing started. Is there a reason why healing is so slow? I don't think CD4's

affect healing. Do they?

Otherwise feeling a lot stronger and froggier. – Blanche

Blanche,
No, CD4 cells are not directly involved in wound healing. Melatonin will reduce the level of hydrocortisone in the blood and this will enhance wound healing.

Glad you are feeling better.

Steve

Dear Dr. Steve:
Yep, I'm definitely gonna live. I still have some weird random itching in personal places, but as I've said before I'm covered with healing herpes and the wiring in that area appears to be very strange. The

itching/burning only happens in the middle of the night! Go figger.

Otherwise everything's healing nicely, although it's taking its own sweet time about it. I feel kinda weak and shaky, but after all I haven't done anything harder than sit for a while, go lie down, get up, eat (Stanley is cooking). Semi-invalid stuff; it's hard to get around when your very middle is malfunctioning so painfully. This does not make for improved muscle tone, etc.

So physically I'm pretty weak, but I'm getting bored, which is an excellent sign. I still figure to stay indoors as much as possible until my numbers come back around 'cuz I'm avoiding West Nile mosquitos, which frankly have me somewhat worried. I don't think I can afford to catch that virus on top of the other two; it does occasionally kill somebody and I'd be very vulnerable. So I'm hiding in the closet until Fall.

Argggh.

Have you learned anything about P.I.'s and shingles? I have this sneaking suspicion that I should still be taking the EGCG. Of course I have nothing to verify this but the dread woman's intuition, but there you have it. Mind you, I don't want to do anything -- ever! -- to encourage the damned Shingles.

Here's another project just in case you ever get bored (fat chance!): there are several antivirals on the market for Shingles (Famvir, Acyclovir to name two). How do they work? Can this be duplicated naturally?

My "Plan" doctor of course is very unhappy right now. I told him I can't get in because of the Shingles (true), but he's not gonna leave this alone, obviously. When should I have another blood test? I know you just found out about Shingles' effect on HIV, but I need a ballpark figure so that I can throw him a fish.

So:

1) anything on EGCG aggravating Shingles?

2) when should I retest?

-- Blanche

Blanche
What's a P.I....Persons of Interest?

There is nothing in the literature about EGCG and shingles, but we can't take the chance of reactivating the shingles. So, we aren't going to use it for now.

Retest in a month.

Back to you later. Busy as hell right now.

Steve

Dr. Steve:
Protease Inhibitor – Blanche

Blanche,
There shouldn't be a problem taking PIs and some of the natural products. What PIs were you on? I just got an idea.

Steve

Dear Dr. Steve:
I was just taking two meds: Viracept, which is generic for Nelfinavir (also Combivir, but that's not a P.I.) – Blanche

Blanche,
I found out that Viracept does not inhibit the proteasome. Ritonavir and saquinavir both do. If you used the latter, in my opinion, they would have activated your shingles infection. I think EGCG and maybe curcumin activated the shingles infection, although your own stress level and those steroid shots didn't help. Quercetin works great against HIV and it doesn't inhibit the proteasome. So you will be fine.

Steve

Dear Dr. Steve:
Viracept is indeed marketed and prescribed as a protease inhibitor. Is that somehow different from a proteasome inhibitor? -- Blanche

Dear Dr. Steve:
I suddenly remembered that you had stated you didn't get involved with "conventional" HIV treatment such as heavy-duty drugs. There are three basic categories of anti-HIV medication:

1. Reverse transcriptase inhibitors: These are the originals such as AZT, and come in two "flavors" (nukes and non-nukes). Nukes (NRTI's) are "N"ucleoside "R"everse "Transcriptase "I"nhibitors. Non-nukes (NNRTI's) don't involve nucleosides.

2. Protease Inhibitors (PI's): The anti-unzippers. These are the drugs that basically turned the corner on life expectancy for HIV+ people. There are now over half-a-dozen of them (brand names). Nelfinavir (Viracept) is one of them -- honest! If I'd kept a bottle I could read it to you!

3. Fusion Inhibitors: These guys are new and insanely expensive. They must be given by injection twice day and cost more per year than most people make! They are the current "last resort."

I also need to remind you that the first time I nearly died it started w/shingles, and I had not been diagnosed as HIV+ and had never heard of protease inhibitors. The stress of the shingles gave the HIV the opening it needed, my numbers probably did about what they're doing now, and I wound up with some nasty opportunists like pneumonia. This time I'm staying home and not getting excited nor letting a lot of people breathe on me. Seems to work.

I think what happened with the Shingles is kinda the same as what the Shingles did to the HIV, only in reverse. The change of protocol released some latent HIV, which activated the CD4's, which then allowed the Shingles to express. Once the Shingles were underway, they re-sabotaged the CD4's and away we go! I really have to doubt that PI's or EGCG had anything to do with this. Curcumin, I can't say 'cuz I'm not that familiar with what it does and how.

I had some irritating itching before I changed protocols. Not much, but looking back it should have told me something. This leads me to believe that the Shingles was building up to an outbreak regardless of medication. I'm obviously going to have to be on the lookout for any skin misbehavior in the future or we'll get to do this again. Any advice on not getting shingles in the first place besides diet? -- Blanche

Dear Dr. Steve:
The higher dosages of melatonin have made all the difference. I don't know if it has slowed the Shingles much, but it does give me a chance to sleep at night -- something not truly appreciated until it goes away. I'm pretty much sleeping through the night, except for one bad spot which seems to arrive around 3am , when nothing stops itching or burning (or sometimes both) and I have to get up, take Ibuprophen and wander around mumbling darkly until things settle down. Don't ask me why 3am ; that's just when it happens.

I've been soaking my woes in Epsom Salts, which also seems to help. Good inside and out. Scabs are clearing up nicely for the most part, although I still sit down somewhat gingerly! I'm now keeping everything dry (when not in tub) with Gold Bond Powder, which smells somewhat like Listerine according to Stanley , but keeps my powder dry.

I'm still feeling like a semi-invalid 'cuz I'm afraid to let anybody breathe on me. Also I'm avoiding West Nile Virus by being nowhere containing skeeters. This means I'm pretty much housebound, although I

expect that to change shortly.

I've lost all my conditioning and have to start again at Feeble. Argggh. Oh well; it gives me something to do. How much do I dare push myself? I'm assuming that I still need to stop before I'm very tired 'cuz

exhaustion is just about as bad as stress. Still, I'm now officially The Bored and The Restless.

Oh, yeah. Another weird story for ya. I'm pushing 60, and have had silver "wings" over my temples for years. Sometimes I dye, sometimes not. At the time I got the Shingles I was in a no-dye phase. However,

the silver is disappearing! No shit. There's still some gray because it's not quite the right color overall, but I appear to have lost the large chunks of gray at the temples. I am not hallucinating. I am not gray-haired either. Go figger.

What in the world am I taking that would cause this to happen? Not that I'm complaining, of course!

One thing about this protocol: it's never boring -- Blanche

Blanche,
If the protocol gets boring, I change it to make life more interesting.

I checked out the protease inhibitors. Here is the story. Although designed to inhibit the HIV protease, they overlap and inhibit other proteases as well. It is this overlap that probably contributes to their effectiveness. The proteasome is an enzyme complex that plays a significant role in the cell. Inhibiting it shuts down HIV synthesis. EGCG and curcumin are both inhibitors of the proteasome so they are great anti-HIV compounds. Ritonavir and Saguinavir are also powerful proteasome inhibitors. There is nothing published on Viracept. If Viracept does inhibit the proteasome, it probably isn't a very potent inhibitor. On the other hand, over four years, it should inhibit the proteasome enough to activate shingles IF the proteasome was involved in the reactivation of the shingles virus. So we are back to square one. I don't know what caused the reactivation of your shingles. Since EGCG worked topically against the shingles lesions, it is unlikely that it caused the virus to become reactivated. I have to cast my vote on stress (you did know you were losing your meds which is certainly stressful) and the glucocorticoid injections.

When did you notice your hair was losing its grey? The color in hair is due to melatin or melanin or something that sounds like those words. The anti-oxidants you are taking, and perhaps the quercetin might have reactivated the cells in the bulb of the hair follicle to begin secreting melatin/melanin again. I'll look into it.

You have to get some excercise, dear. How is your health in general?

Steve

Dear Dr. Steve:
Those were pretty much my own thoughts. Re: Viracept -- did you look for Nelfinavir? (Just a note; I don't think it really matters at this point).

The scenario I envision goes something like this:

1. Four (four!) cortisone shots for neuroma

2. Problems w/newsletter I'm involved with (my partner's a twinkie)

3. Stanley laid off, underfoot

4. Knew I was stopping the meds I'd relied on for over five years

Yeah, that's stress!

Also, we had anticipated a surge in the viral titer with the change of protocol; you said you didn't know how much or for how long and we were looking forward to finding out something about changing from the heavy-duty meds from this. Then the Shingles came along. Probably encouraged by items 1-4 and also in part by the increased HIV viral activity. As the HIV moved out of latency, it activated CD4's with Shingles also, I'll bet! Then the Shingles returned the favor and activated more HIV. Argggh! I'm fairly confident that when the Shingles is cleared up my numbers will change a lot.

If true, this is important for anyone planning to go off the meds. Make sure your "Shingles Insurance" is paid up before stopping!

Yes, Viracept is definitely a protease inhibitor. As I said, there are a lot of anti-HIV drugs but only three actual types. Also, as you point out, the EGCG works to suppress the Shingles when applied topically. I see no reason why it should do otherwise when taken internally, but then what do I know?

I just noticed the hair when I started feeling better. Appearance has been pretty much at the bottom of my list for quite a while now. Abating total misery has been far more important. Now that I'm feeling semi-human the other things are starting to be noticed. The hair must have started a while ago; it's been three months since my last haircut and I don't see any real sharp demarcations of color (brown to gray) anywhere.

Also must note that I have developed some hair in armpits. I've been bald naked for some time; now here's the fuzz -- this is not stubble, it's 1/4" or better hair. Not a lot, but it's there. I also have a grand total of one -- yes, one -- hair on my right leg. Totally weird. Am I getting younger?

Exercise: Up 'til the Shingles I was very active. Now everything's fallen off and I have to start over. I've been pretty much a semi-invalid because in the beginning of all this, I had really bad lesions on my forearms and was staying home and sulking. I had no idea it would go on this long.

Then I couldn't walk, sit nor wear pants for almost a month. Shingles on the butt are not fun, lemme tell ya. I was walking around like Granny Clampett. I'm still leery of getting too far from home 'cause I'm still shaky and have errant burning/itching (not often, but enough to make me want to stay where I can treat it NOW ). Scratching your personals in public make people avoid you big time!

Bear in mind we have only a swamp cooler and it's hot and sticky in here. Monsoon madness. Be assured that all this will be changing rapidly, as I'm getting froggier and froggier and really, really bored. In general I'm feeling, as I said, a lot froggier but I'm still a lot more feeble than I was when this whole mess started. Nutz! -- Blanche

Dear Dr. Steve:
It occurred to me that we've been so busy trying to figure out why my numbers went to hell that I haven't given a thought to my fellow clients, nor to your own good self.

(Questions about other clients deleted).

Forgot to take my 20mg-odd dose of melatonin before bed last night, and hooboy! did I ever pay the price! Up at 2:30 itching and burning and never did get back to sleep. Not a good night; must not let that happen again.

Although I still have random herps here and there (one herp, two herps, right?) they are definitely healing. I assume this dead-of-night problem is a post-herpal neuralgia syndrome or something. Trouble is, the discomfort is in my personals and the actual herpes are on my behind. Funny wiring. I can't keep the EGCG on my butt 'cuz it just rubs off. Too bad I can't sleep with my ass in the air like babies do, huh? Now, THAT would be an amazing and probably frightening sight.

Maybe someday it will all go away and I can get back to normal (well, normal for me, anyway). -- Blanche

Dear Dr. Steve:
Doing much better now that the Shingles are in full retreat. Being able to sleep all night most nights is a wonderful blessing! I can actually wear clothes again without being beaucoup uncomfortable.

I wish there were some way to tell what my numbers were doing, even in a general way, without a blood test. I plan to retest the first week of September. Normally I only test every three months but I have a feeling it will be no problem getting a one-month test outta my CIGNA doctor, under the circumstances. He will also undoubtedly want to see me and that's probably when the tapioca hits the air conditioner. I'll personally be happy with a moderately lower viral titer and a big bunch of CD4's. After all, it's only been a month, and I am now not taking any protease inhibitor at all. This is nervous-making. I have real hopes for the CD4's however.

I'm really, really bored now and am itching (ha, ha) to get back into the swing of things. I plan to go shopping with Stanley' 90-year-old grandmother on Tuesday. I figure if I can keep up with her I can start getting my strength back. (That's not as silly as it sounds; she's in remarkable shape).

I've still got healing herpes here and there (especially there). How long do you recommend I continue to take the nightly 20mg of melatonin? I can continue indefinitely so far as I'm concerned, but there might be

a good reason why this should not continue. Is there? If not I'll just keep on keepin' on because it is really helping!

How's yourself? -- Blanche

Dear Dr. Steve:
It's awful here. Sticky and yucky. Still, I went shopping with Grandma and did indeed manage to keep up with a 90-year-old! Small blessings. Wasn't even especially tired when I got home.

What do you recommend for the scarring from Shingles? I've got an arm that is covered in remarkably lavender spots. It would be a nice color somewhere else...

Sleeping through night (with the occasional potty break; I am 60-ish). Lesions drying nicely. Can even sit down now if I am gentle about it! It appears I am ready to rejoin the living.

Plan to test again first week of September, and I'm nervous already. The CIGNA doctor is not going to like the numbers no matter what improvement we see. He's a good doctor and a nice guy, but he works for CIGNA and is therefore pretty much limited to ultra-conservative treatment options. They don't like to take chances; their main objective is spending as little as possible and not getting sued. This will not make him receptive to my current treatment. He will probably tell me I'm gonna die, and I don't really need to hear that kinda negative shit from anybody. So I'm avoiding this appointment as long as possible.

Actually, at this point I plan to avoid the entire issue by not admitting I've quit the meds. I plan to quote that article you gave me on zoster and CD4's, macrophages et al. Also mention other sources of stress (other than stopping meds, a subject I'm carefully dodging). -- Blanche

Blanche’s note: My new spam filter started grabbing Dr. Steve’s email right about here, and it took a while to be discovered. Some of these may seem a trifle odd because of this…

Dear Dr. Steve:
Are you alive? Haven't heard from you in over a week!

I know you're very busy, but let me know that you have not been kidnapped by Gypsies. -- Blanche

Blanche,
This is my third email to you in the last few days. Aren't these emails getting through? Let me know ASAP.

Steve

Dear Dr. Steve:
Your last email to me is dated 8/11 -- over a week ago. I was getting worried!

I even checked my ISP 's website to see if stuff was not getting here for some reason, and there's nothing on their server either. What's up? I'm getting everybody else's email, so it's probably at your end – Blanche

Blanche,
Did you find the Chantal cream? It is available from Nevada Vitamin Company. It's 72% aloe vera. Works great.

How are you? My screamingly high blood pressure has been brought under control.

Steve

Blanche,
Sorry that I've been out of touch. Work load is getting worse, and now I find myself so stressed that I had to go on hypertensive medicine. Blood pressure went through the roof. I was having temper tantrums for no good reason. The funny thing is that nothing bad was happening. Everyone I am helping is fine. Everyone is doing great. So why am I so pissed off...

Stress, my dear. Everyone wants something from me and I don't want to let anyone down. Of course, my 82 year old mother, who lives with me, forgets on a regular basis that my primary job is not to wait on her hand and foot. The stress adds up.

I feel for you regarding the weather. I couldn't even think if I had to endure weather like that.

Regarding the HIV, I found out some interesting stuff. EGCG or curcumin should be combined with quercetin but not each other. There is too much overlap between EGCG and curcumin. It’s a waste of time. BUT, quercetin makes both of these compounds more effective. Long story.

What is your protocol at this point in time? How much quercetin do you take and when?

Don't worry about the CIGNA doctor. What's he going to do, send a note home to your mom? I know you have to deal with him in some way. I think you are wise to point out that the herpes activated the HIV because it did, but he has got to be told that you aren't on meds any more. Doesn't he know that already?

Get back to me today because I want to review your protocol. Maybe we could risk going back on some EGCG. EGCG is great for HIV and I can't think of a reason why it should reactivate the herpes zoster. We could try a little and work up if you want.

Let me know.

Steve

Dear Dr. Steve:
email #1: What is Chantal cream?

email #2: Thanks for the news. Sorry about the blood pressure. I mentioned in an earlier email that my woman's intuition said I should still be taking EGCG but perhaps not curcumin. I hate it when I know something and don't know why I know!

Shingles clearing up nicely but I may have a secondary infection. The skin around my "legpits" and the outside of my labia majora is red and irritated. It does not appear to be heat rash. Also, I have some funny spots on my face: tough, dry-feeling skin, also red patches. I got a neosporin analogue and it seemed to help. We'll see. Does EGCG work on bacteria?

Protocol:

The kocktail at this time is just the 49% fat coconut milk and the quercetin.

3.6 grams NAC

1.8 grams ALA

1.5 grams acetyl l-carnitine

(the funny numbers are because I take the largest caps I can find (or multiples) three time a day. This is how it works out).

Melatonin (wonderful stuff!) 3x3 + 18-21mg at night

DHEA 50 mg

Note that there is selenium in the NAC caps; a little less than you recommended. I'd have to go check on this but I don't think it's that critical.

Epsom salts inside and out (helps dry the herpes).

I feel like I'm forgetting something, probably because I have stuff I'm not using taking up shelf space (EGCG, curcumin).

The only reasons I'm worried about the CIGNA doc is (a) he's a nice guy and I hate to upset him and (b) he'll probably start throwing negatives at me -- not really helpful. I would like to tell him after the Shingles is gone and my blood test results somewhat resemble what we were expecting. I'm chicken (reason number three).

email #3: Glad you're doing better. Take better care of yourself! Are YOU taking melatonin?

I'll bet you're going to want me back on the EGCG? Good guess? -- Blanche