Grouppe Kurosawa: HIV - Letters From Blanche Vol. 4, Part 5 (print)

Letters From Blanche
Vol. 4, Part 5

Blanche,
You are awfully quiet Blanche. Makes me nervous.

How is the editing going. I just sent Adam's story to the webmaster. I hope it gets up by tomorrow. I have half the treatment protocol written. In the scientific section, I am trying to explain in detail what the virus does and doesn't do. Its slow work.

How are the shingles and candida infections faring? Gone, I hope.

Trying to help another brain cancer victim. A relative of a friend. I think the guy is too far gone, but I am trying to help. So I wrote up a protocol and behind my back they had it checked out with some big whig doctor at the Kaiser HMO. He actually liked it. Now that really makes me nervous. When I begin pleasing members of the medical community it concerns me. Am I slipping, becoming too conventional?

Steve

BC
Conventional, smentional. If it works...

Where am I? Waiting for you to reply to my email of Friday, November 5 asking for advice and clarification on editing procedures. No reply as yet. I do a lot of editing (Newsletter, remember?) and don't want to get asshole deep in the thing and then have to redo everything. I'm lazy.

I figured you were busy (I was right!)

Shingles are gone but scarring is extensive and some lesions remain. I'm not healing worth spit. The candida is my new nemesis. Better now, worse later. I'm taking drugs and putting stuff on it and it's still not gone. This is depressing.

However, it is getting easier to live with and the pain and itching are diminished greatly. I'm still peeling like bad sunburn, however. Tough little devils!

I'm not sure whether this is bad news because of what it implies about my immune system or just a sign that I have the Stanley Crud. He has apparently been dealing with this his entire life, and I may have just contracted my own version of the Crud.

Crud. – Blanche

Blanche,
Sorry. I don't remember the email. Maybe I deleted it by mistake. Wouldn't be the first time. The last two weeks has been one crisis or problem after another. I want to go to Tahiti .

OK, tell me what you want and I will answer. My afternoon is yours, dearie. As your immune system gets back in shape, your candida will disappear. When, I don't know. Are you stressing out again?

Keep in mind that as your immune system gets back into gear, you might experience some fever, and general feelings of discomfort. This means your immune system is attacking the viral reservours, including those of the herpes viruses. This means the release of proinflammatory hormones...can't be helped. Chronic fever is bad, but acute periods of fever are usually good.

I await your carefully crafted reply.

Steve

BC
No fever that I've noticed, but then again remember I'm post-menopausal. I get hot (or cold) at weird times as a matter of course. Nausea, definitely. That's what "feeling green" was all about. Perhaps I shouldn't say I feel fine when I'm tempted to barf at oddball moments, eh? Confuses the doc. It just didn't seem serious, and there WAS the 'flu shot...

I hesitate to use the Candida as a measure of my immune system, even though stubborn Candida overgrowth is known as a sign of a damaged immune system. My reasoning: Stanley has a kick-ass immune system and has never been able to totally control his version of this persistent pest. So if this is my old original I'm still in trouble, but if it's the Mutant Fungus >From Mars then it may prove difficult to control, immune system or not.

So I guess I should be glad I've been feeling greenish? -- Blanche

Blanche,
My general theory is as follows. You have an HIV infection and you feel just fine? You are in trouble. (Other clients) went through a period of fever and nausea as their immune systems cleared out the virus. This is a good sign...the immune system is on the attack.

I received the other email. I've never seen this email before. It either was rerouted to Tahini, where I should be right now, or I deleted it by mistake.

Steve

Blanche,
In your case, green is good. It could be due to an adverse reaction to the flu shot, but it’s more likely due to the immune system attacking all that HIV viruses in your intestines. Yes, your intestines, the mucosal immune system down there harbors most of the virus.

Steve

p.s.: Did you get my response to your questions, sent yesterday?

Steve

BC
Yep; sure did. I coulda sworn I answered you but don't see any reply. I musta answered the other email. Duh.

At any rate, your ideas sound sound (ha!) and I'll get working on that as soon as the bloody newsletter is out -- about a week and a half. Right now I'm asshole deep in alligators.

I may run into some individual problems as I go, in which case I'll drop you a line.

"It's hard to remember you came to drain the swamp

when you're asshole deep in alligators." -- anon.

Blanche

Blanche,
Where are you Blanche? Did you and Stan have a nice Thanksgiving?

No one from the press contacted me about the HIV PR but the web site is very active. The word is getting spread around, but no one, apparently, knows what to say to me directly. Another two Mice, on HIV meds, have signed on. They want to get off meds asap. I said OK, but it’s going to be a gradual process.

The daughter of one of my cancer clients wants me to help her with the organic chemistry project. Most people are scared to death of me, but this kid is fearless. So I said OK. This is going to be a hoot.

Miss hearing from you.

Steve

BC
Asshole deep in alligators

First there's the newsletter, which always takes up so much of my time every three months.

Second, my DSL was down and we were waiting for Covad to come fix it. This puts the newsletter farther behind. Argggh. Just now got the connex straightened out.

Third, I took too much acidophilis to combat the candida and gave my self dysentery. Not diarrhea; this is something I've never experienced before. I got so dehydrated I probably should have been in the hospital. Took Immodium for the shits and lay in bed for 2-3 days drinking water. Beginning to feel human again.

>>>"I don't know why she swallowed the fly. Perhaps she'll die..."<<<

Once the newsletter is outta my hair I'll have time to work on the website stuff. I'm really glad it's working out so well. I'm slowly wading through the alligators and should hopefully be back up to speed soon – Blanche

Blanche,
Dysentery? Christ Blanche, what's next? You are a walking, talking afront to medical science. You should have been dead eons ago. Apparently, death is not your fate. This sounds cornball, but I've seen it too many times. You have a destiny that you do not understand. You will in time.

Glad you are alive. Got a real sweet email from a guy who's been on HIV meds of different kinds for 15 years. He said, and I quote "God Bless Blanche." He wants off the meds and you are his inspiration. When you aren't being cranky, you are a hero you know. Makes me laugh.

Steve

BC
I AM supposed to be tits up. In 1999 I was told to go home and put my affairs in order. This was after three weeks of misery including tubes, caths, etc. I decided that since I'd been through so much already I wasn't going to die after all. So there. Didn't.

Your comments about the guy who wants to quit the meds gave me a thought. Perhaps I -- or you -- or we, whatever, should write up a little comment for the website stating "you will feel worse before you feel better. Be prepared for this and hang tough."

Mind you, I think I was working on the Shingles before I changed protocols, but we'll never know. Think about this: What advice would you give a protocol-changer that would increase his/her chances of weathering this transition better than Mouse #2? -- Blanche

Blanche,
Yes, good point. One of the people who wants to go off meds already postponed it until after the holidays because he read Adam’s Story on our site. Adam got sick before he got better. It doesn't make any difference if people are on meds or not. If your immune system gets active and sees a ton of virally infected cells, hold on for dear life. Its going on the attack and its not going to be pleasant. Your point is well taken.

So how do you feel these days, dear. I worry more about your stress level than I do about the HIV infection.

You write up the statement, now if you can, I will post it immediately. It has to be in your words. Write a few quick pages. A paragraph isn't going to do it. Tell them a little about yourself and what you went through. I need to get this stuff posted now since the traffic to the web site, at least new visitors, has doubled in the last 5 days.

Steve

BC
I'm not sure exactly what you're looking for here, but here is my virgin effort. – Blanche

Blanche,
Excellent. It will posted on the site tonight in the AIDS folder as Blanche Speaks. God you are a great writer. I already integrated a mention of the essay into the main treatment folder, which I update each day.

Yer Cheeseship:
I thought perhaps it might be easier to divide our over-500-missive correspondence into more bite-sized chunks. I went to what I felt was a reasonable stopping point.

I've tried to get all the proprietary info (names, numbers, etc.) out of this section. Please take a few moments to scan over this file and see if I've compromised either of us. If you need to send the file back for whatever reason bear in mind that I'm living in the dark ages and the file must be formatted for Word 6.0 or I can't open it.

I thought perhaps I'd crank out a section now and then and we can add it as we go. Comments? -- Blanche

Blanche,
It’s great. I made a few cosmetic changes, like deleting my personal email address, but its great work. Totally, brutally honest. I sent it on to my sister, the webmaster from hell. I drive her nuts and not in a good way.

OK dearie, begin volume two.

BC
Oops! That's why I suggested YOU go over it. My mother always said, "Two heads are better than one, even if one is a pumpkinhead." She never said which was which, but I had my suspicions...

If t he webmaster wants a different format for what I send you, let me know. I can do it in html if she'd prefer. Any specs would be helpful in that case. -- Blanche

Blanche Dearest,
My sister put Blanche 1-3 into part one on the web site. Blanche 4, 5, etc. is going into a Part 2 file. Not done yet. She doesn't want the Parts to be too long. One of my HIV clients, a new one who wants to come off meds, said that he read the first Blanche essays and couldn't stop laughing. He said I handled Blanche quite well. I informed him that NO ONE handles Blanche quite well.

Its going to be interesting to track the traffic to these essays. They are both informative and very funny.

Oh, the same guy informed me that the Latin for Steve Martin is Crowned Warrior. He says I am the Grand Chess Master of Human Biochemistry. I told him that the Big Cheese was just fine with me. I don't nuthin about no Latin anyway. I barely passed my French exam for my Ph.D.

BC
Reading the January 2005 issue of Scientific American. If you are unfamiliar with the publication, it's written for non-scientists who are not utter idiots and can follow a scientific explanation. Of course, sometimes in physics, for instance, the Greek loses me badly...

There's this article, "Immunity's Early-Warning System." It discusses toll-like receptors, which help control disease for things ranging from nematodes to me and thee. This appears to be a second immune system entirely separate from the B and T cell department. The only part I recognized was the macrophages. Apparently TLRs have a great deal to do with cytokines. They are also involved in autoimmune responses.

The article claims the discovery of TLRs is only seven years old. I know you're constantly reading about this stuff, but wondered if you had actually stumbled across this aspect of the immune system. If you think this is of interest, pick up the January 2005 issue of Scientific American. It won't tell you what you want to know but it will lead you in the right direction. If you already know all about this stuff: sorry; didn't mean to be insulting. Remember how little *I* know. I'm probably preaching to the choir here, but I had to let you know -- Blanche

BC
Had some Redi-Whip left from something we'd already eaten (a pie or something). Redi-Whip is whipped cream, not a substitute made from corn or whatever. It's outta cows and if you get the regular, as we do, it has a high fat content.

Just on a lark I threw some in the last batch of kocktail I was making. Wow! It smooths things out nicely and, while I can't say the mixture tastes good, it is a radical improvement over the original. Remember that I also add brown sugar to the mixture to cut the bitter.

How much of either of these is used is a matter of personal taste, but the whipped cream makes the thing almost fun and should help with absorption. I put the entire shebang in the blender, but you could float the whipped cream or the sport. Just a note – Blanche

Blanche,
And how is the Blanche Monster these days?

The number of web sites referencing the words grouppe kurosawa has increased by about 500 in the last week. I found one site that was in fact a message board discussion of the protocol. One of the guys kept saying "Well, Blanche said this or did that..." It was very funny. I told you that you were going to be famous. It just takes time.

I finally heard from someone in South Africa .

I am trying to put a blog up on the web site so I can post to it and people can comment on the posts. It’s much easier for me. For some reason, my sister is having problems with the FTP. We are using Blogger, but it’s on our web site. We need to track the stats and drive traffic to the site.

I also changed the protocol to include silymarin. Got some good info on it that directly relates to both cancer and HIV. BUT, I don't want you to take it until after your blood test.

Tell me something funny. I need to unwind and laugh.

BC
The Blanche Monster is doing fine. Still fighting to clear up the last of the Candida and trying to get my poor legs to heal. At this point am experimenting w/essential oils and having some success. I had been given some anti-Candida topical at the clinic (Econazole) and it did absolutely no good, but that was when things were not going well -- immune system out for a beer and everything kinda running at half speed. Am trying it again because all I need now is a little help. Trouble is that when I put in on the yeastie beasties run in circles screaming "the

sky is falling!" and it itches. Millions of little yeast feet – worse than ants! We'll see. Things have been quiet around here (except for all the pre-holiday scramble); I'm not sure anything amusing has happened.

Stanley is looking for work now 'cuz his comp is running out. The "make and sell your own furniture" did not work out well. I mean, this is a man who will go to any lengths to avoid speaking to strangers! What made

him think of himself as a salesman is being the scope of mortal reasoning. Of course nothing is happening this time of year and that's rather depressing, but I look forward to an improved income and glorious privacy after the first. 2004 was one of those nasty years for me -- everybody gets four or five and I think this is my third. I'm waiting impatiently for 2005 to show up and clear the slate. Onward and upward!

I mentioned silymarin (milk thistle) to you 'way back when you were first talking about a client’s hepatitis. It is supposed to help heal the liver in addition to whatever other things. I thought it had possibilities. It should definitely help w/hepatitis. I'm not sure how it does what it does and we'd have to be sure it didn't prevent

"necessary" liver chemical breakdown products. What's it do for HIV?

Finally got the December issue of the newsletter out the door. Plan to do absolutely nothing with redeeming social value until next year, at which time I'll start feeding you the Perils of Blanche once again.

I wish I could help you with the message board and all, but I never got that far with my own system before I decided I didn't need it. I was originally going to set up a website and message board for the newsletter, but my partner (the twinkie) and I didn't see eye to eye on content. I got tired of arguing. The next time I start a project I'm doing it by myself : "He travels fastest who travels alone."

So, I'm gonna be famous, huh? I would have preferred rich, but shouldn't be greedy...

I don't know why you need me to tell you something funny; the image of this poor guy sitting on his own doorstep is good for a few laughs! Actually, it appears to be a universal problem. Guy retires, sits around

the house, drives spouse or significant other crazy. Too much time... The spouse, of course, is used to being home and has a million things to do, all of which require her to first remove the hubby unit. I need the bathroom, Stanley 's in there. I need the fridge, that's where you may find him -- right in front of whatever I am after. Then he stands there with the door open.

Plan to get a blood after the first of the year. I'm hoping for lotsa progress plus the lifting of the dread 2004 curse.

I'll get better. He'll get outta my hair. Can't wait. – Blanche

Blanche,
You will be both rich and famous. We will have the Blog up and running today and a discussion group, only for members of the GK Society (financial contributors) and Kurosawa Mice, up and running in 2005.

I just got the Jan. Scientific American. Good stuff.

I'll tell you all about silymarin later. Looks good so far. Glad Stanley is still functioning.

BC
I've decided you're right; I should definitely have croaked long ago. What can go wrong, does. What can cause the most problems by going wrong, will. Arggggh.

Right before xmas here everybody dropped dead. This cold was the worst anybody I've spoken with can remember. It was horrible. Stanley 's grandmother is still basically bedridden. Well, she IS 91 years old, but

it's been two weeks. Even Stanley, who has the constitution of a mule, was flattened for over a week.

And me? Sinus infection, swollen brain. I kept waiting for my membranes to rupture and my brain to come down my nose. The pain was incredible. Then I've also had post-herpal neuralgia in my back. I spent the last

two weeks whimpering pitifully, let me tell ya.

The most serious problem, however, is that I could keep nothing down. Pain makes me nauseated. No food, no slime, no supplements -- nothing. I have no idea what this has done to my numbers, but it cannot be good.

I've now postponed my blood test 'til February in hopes of seeing more favorable results. I have no idea why I'm alive. I lost ten pounds in two weeks and at this point am so weak I can barely schlep around the house.

However, I got the slime down this morning without any bouncing and am ready to go at it again. My head has stopped exploding but my back is still incredibly painful. I'm living on percoset-analogues purchased over the net.

The most frustrating part of all this was everything was clearing and healing so nicely. 2004 was not a good year around here and we were all hoping for improvement. Like I said, maybe 2006? -- Blanche

p.s.: the good news is I'm not dead yet.

Blanche,
Well, it’s about time. I figured you must have died of fruitcake poisoning and Stanley buried you in the desert.

OK, go on the silymarin right now. The stuff is cheap and is sold as milk thistle extract. I gram a day of the extract in the coconut milk, 500 mgs or so twice a day. The stuff is amazing. Since your bloods were around the corner, I told you to hold off on it. But your reschedule, which I approve, means you should start now. Silymarin has no known toxicity so use all you want. This compound may end being one of our most powerful weapons against HIV, hepatitis B/C and cancer of all kinds.

You ain't going to die of HIV. Your current problems have nothing to do with HIV. But you do have to get back on the Goop. We don't want any relapses. The silymarin may help with your infection and recovery.

Check in daily from now on. I've been missing you.

BC
Just a quickie. I'm back on the protocol and feeling infinitely better. I haven't gotten the silymarin yet. I need to place an order for everything at once because that way I get free shipping, see?

I've also found that Eggnog is a great chaser for slime. – Blanche

Blanche,
Eggnog? Ok, good tip. Glad you are feeling better. Make certain there is nothing in the silymarin but milk thistle extract. Read the label, dear.

BC
Things are going well here. Of course, I won't know how well I'm actually doing until after my blood test in February, but I'm feelin' good.

I seem to be totally over the Cold From Hell now, which is a blessing. It was a real mother!

I hope to get back to sending you more of the Ballad of Blanche very shortly.

Still haven't gotten the silymarin, but should be placing an order shortly. However, it may not really show up on the blood test because of the late start. I have to take advantage of discounts and free shipping now. Stanley 's unemployment has run out and we're tring to live on my <$900/mo disability check. This is not working, to say the least. I've started nagging the poor man to get something -- anything! -- that provides an income. I worry about worrying, so to speak. The lack of security is very stressful. I'll be glad when he's back at work. Also, I need to get the dear laddie out of my hair. I can see that when he retires we are gonna have a real problem. Underfoot all the time! Argggh!

Haven't had a chance to read Anna's story yet, either. I was pretty flat around the holidays and am just now beginning to feel good. I've just been flopping around. Now I need to get my muscle tone back, but it's been nasty and rainy around here and I don't want to get sick again, so am staying close to home 'til the weather clears.

How are thingsl in not-so-sunny-California? I'm assuming you haven't floated downstream yet. -- Blanche

BC
The damned cold is back, or else I have another. This time it appears to be restricted to my nose and lower sinuses. My head is not exploding yet, which is good. Exploding heads are sooooo messy.

I'm not even sure it's a cold; it may be the lingering effects of the sinus infection I had *during* the last bout. I had ordered amoxicillin over the net, but it hasn't even arrived yet. Whenever it actually gets here I'll have to decide if there really are secondary problems or if taking antibiotics is a waste of time 'cuz I'm trying to stomp a virus.

The good news is that the Candida is definitely on its way out. If it is indeed the Martian Crud that Stanley has had for years, it will not quite go away, but will be invisible except for occasional flare-ups, which is what happens to him. Every change of season he gets itchy. Mine appears to be doing something similar, although it's too soon to know what will happen at a season change.

All in all, between the cold symptoms (sign of a functional and angry immune system) and the disappearing Candida, it appears my CD4s are rebounding nicely. I'm probably gonna go ahead and get my blood test early in February; obviously, waiting for everything to settle down is not a valid proposition, so I may as well get some information, cold or no cold. We'll just have to consider my general condition when calibrating.

My legs are still horribly scarred and there are spots that are still healing. After the shingles was over and done I developed itchy patches of unknown origin that I was scratching at night. My skin just sloughed off in spots; very odd. At any rate, there are still patches of scabbing and deep lesions that I will probably take to my grave; they're just not going away. I've started wrapping my left leg at night because I'm such a picker, and when not quite awake can draw blood. No, I'm not wearing boxing gloves to bed. Forget it.

Still haven't gotten the silymarin; sorry. As I mentioned in a previous email, I MUST take advantage of quantity discounts and free shipping or I can no longer support my medical needs. I just placed an order before you changed the protocol (naturally). My income just about pays for housing, and Stanley currently isn't raking in one thin dime. We're in deep doggie doo-doo. Goodbye, savings. I told Stanley he must have an income if he has to go to work at a car wash with the kiddies. Even minimum wage will help tremendously.

I'm getting stronger every day and my attitude is good in spite of colds and a husband who took toooooo loooooong a vacation. I'd trade him in but his resale value isn't very good right now. Besides, I'm kinda used

to him...

How are things at your end? Anna? Adam? -- Blanche

BC
Was reading something the other day on Mad Cow. The little brain proteins that get subverted and re-folded by the MC prion are called -- ready for this? -- Stanley proteins. Laughed so hard I almost hurt myself, in spite of the fact Mad Cow is not a funny problem. I **knew** having too many Stanleys running around was not a good idea!

Things are fairly quiet around here. Stanley 's unemployment insurance has expired and he is now frantically seeking employment. His "self-employment" scheme fell quite flat on its face. Making and selling furniture is not a good choice for home working, and is complicated even more by a man who is TOO SHY TO SELL ANTHING. What a mess! Our savings are depleting rapidly and the wolves are at the door. Argggh.

I am holding up fairly well in spite of the increased stress, but some itching is starting to occur. All I can do is hope he finds something before I wind up back where I was in the Fall. I am currently taking 9mg of melatonin before bed and perhaps that is helping. I'm trying to balance that with the fact that too much melatonin interferes with my cortisol or something and I itch MORE. Balancing act. (I started originally with 3mg -- not enough. Then we wound up as high as 3+3+21mg -- too much! Playing Goldilocks right now.

In spit of all this I am getting stronger all the time and am about ready to start taking some walks to get my legs back (they do come in handy). Keep yer fingers crossed for us – Blanche

Blanche,
If you feel some emails should be deleted, delete them. But leave the important ones regarding your skin.

I know of no one who just went off meds like you. If they did, they'd be sick. You aren't.

BC
I'll be calling to get the paperwork for a blood test sometime next week, and plan to get the test itself early in February. I should get results 1-2 weeks later. By the time those come in, we should try to be up-to-date on this correspondence on the website, so we can do an announcement: "Blanche CD4 explosion!" or whatever. I hope. -- Blanche

Blanche,
Yes, the emails should be pertinant, but NOT over edited, esp. if they are funny.

The first stopping point is the bloods next month. Next, we have to have documentation of the CD4 and viral titers. We can always be accused of making this up. We don't need to publish the actual tests, but you should have copies should Le Bush send his troops to stop us. Gosh, we could be hurting the pharmaceutical industry with all these volunteer experiments.

BC
No record of blood test results; they were delivered over the phone for the most part. All verbal.

Do you think I could just write to CIGNA and request "viral titer and CD4 count" for the blood tests in, say, 2004 and the one coming up in February? -- Blanche

Blanche,
Sure that would be fine.