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

Letters From Blanche
Vol. 1, Part 2

Hi, Dr. Steve --
Yeah, more questions.

1. You say to put the EGCG in the coconut milk with the curcumin. Some things extract better with lots of heat and other things degrade. Do I boil the EGCG, or is that added after the boiling business?

2. Magnesium: I take a calcium supplement that also contains magnesium. Dose is 750mg/day. How does that affect the Epsom Salts? I haven't started taking that yet; I'm very active and we don't have a car.

Alimentary distress on Metro Transit is not a good thing. I'll have to start reeeeeal.... sloooowly.

I just got on the internet and spent a whole lot of money, which I think should give me a month's supply or better of everything. I will be adding supplements as I go, based on your previous email. I will be going in for a blood test ( CBC , CD4's, viral load) the first week of April, so I'll be starting from there, because that's about the time the meds run out. By that time I should be on at least minimal doses of everything, and will start increasing as tolerated.

If there is anything wrong with this plan, let me know now and I'll punt. – (Blanche)

Blanche:
You are doing fine. Dissolve the EGCG in boiling water and add it to the coconut with the curcumin. Boil both together. We want the EGCG to attach to the lipids in the coconut milk. The stuff tastes really, really bad, but you are too tough to die so who cares.

Forget the supplements with the calcium. You get enough calcium in your food. What you don't have is magnesium. Be very careful with the Epsom salts and NEVER take more than a level teaspoon full each day. For safety take 1/2 teaspoon twice a day. We don't want any pooper problems.

We'll walk you through everything. Glad to hear about the tests.

Steve

Hi, Dr. Steve,
A couple of questions:

1. I have increased the melatonin to your suggested amounts, and have developed a peculiar problem: I'm so happy to be anywhere that I'm not getting anything done! Also, I have started taking a mid-morning nap (I really seem to need it) which is totally cutting through the middle of my day. Then I have trouble getting to sleep at night. I'm taking 6am : 6mg; 2pm : 3mg; 10pm : 3mg. Perhaps that should be reduced or switched around? I'm a little zombied; unmotivated, but content.

I've also just increased to a little under 2g/day of ALA (600mgx3). I've added 2g/day of NAC and 2g/day of acetyl l-carnitine, starting on 3/24. I don't anticipate any problem with the ALA or the acetyl l-carnitine, and am starting low on the NAC. Still need to add the Inosine. So far the only problem is the sleepiness early in the day and a basic lack of motivation. I'm too happy and need to adjust the melatonin. TOO darned mellow.

2. How long does it take to get the EGCG from Dr. Hoffman? The other supplements, ordered at the same time from another site I've used for years, are already here. It's not yet really a problem, but I'm rying to get a rough idea of ordering quantities/times to keep the flow of supplements steady. I'm sure that compliance applies just as much to this stuff as to the nasties.

I want to be sure I have everything timed so that when the drugs run out I'll be up and running on your protocol, and am a firm believer in lining up ducks first and relaxing later rather than the other way around. That way if there is a problem there is also time to fix it.

Thanks for all your help – (Blanche)

Blanche:
I am having a frustrating day and your email just made me laugh.

OK, good feedback. Leave the morning dose but cut out the afternoon. The hydrocortisone peaks at 5-6 am so we really need to keep the morning dose. I have another, cheaper, source of EGCG for you. Will send you the URL. The Hoffman site is totally reliable though. It will arrive soon.

Contact me at my private email site from now on. The commercial site gets so much spam that I dread reading my mail.

You will be fine, Blanche.

If you have any serious problems when the commercial drug supply stops, call me at home at (phone number deleted). Go to your grave with this number because it is unlisted and I don't like being harassed by people I don't know. I don't at all mind being harassed by people I do know, however.

Steve

Dr. Steve:
Glad I could lighten you day.

Any links to sites where I can get any of these supplements cheaper is a blessing; the cost is running right at the edge of the fiscally possible, and I'm not even up to speed yet!

Don't worry about the phone number; I am one of those rare people who truly can keep a secret. I will save it as something innocuous. It will only be used in an emergency, so hopefully you will never hear my voice. I can harass you just fine by email; it's a talent.

I'm having a bit of a personal oil shortage here. No soy, no corn, no safflower, no butter. I do use and like olive oil, but sometimes it just isn't appropriate. Most nut oils are out of my price range for everyday

use, but I can use peanut; is that okay? Also, how about sunflower seed oil? It costs a little more but I really like the taste. Also, what about mayonnaise? Do I have to make my own? Do you have any idea how

many food items have soy oil in them? The mind boggles.

Also, re: calcium, magnesium, et al. I am a 58-year old woman, and developed "severe" osteoporosis (according to the DEXA) while trying to drop dead five years ago ( PCP , MAC , HIV; I somehow skipped mad cow). By "work against gravity," calcium+D, and a short stint on Fosamax I have managed to get "up" to low normal (for my age). I thought more calcium in my diet was critical.

Now for some reason I have the sneaking suspicion you are going to reply with something about how calcium was never the problem, that magnesium shortage causes more problems than lack of calcium. Is my radar working today? If not, what do I do about my crotchety old bones? I don't mind most of the dairy products, although it's not going to be easy to adjust to nonfat again; I really dislike it. I know for a fact that butter is going to happen in my life occasionally. And please, please tell me the problem lies with the aracidonic acid content in milkFAT. I eat lots of lowfat yogurt, and would really hate to try to find a substitute for that!

I've got about a week's meds left. If I haven't gotten the order from Dr. Hoffman by then, I'll find something locally with the highest possible concentration of egcg and carry on. 70% is hard to find, but I'm sure I can come within spittin' distance if I shop around. No worries. – (Blanche)

Blanche:
Canola oil works. Olive oil contains too much oleic acid which feeds tumor growth. Low fat dairy is just fine ( I know that non-fat tastes like crap) and so is moderate mayo. The key word is moderation.

The melatonin will slow down the osteo because osteo is induced by pro-inflammatory immune hormones and hydrocortisone which increases with age as melatonin decreases. Give it some time. If you eat lots of low fat dairy, you don't need calcium supplements. The breakdown of bone is hormonal. It has nothing to do with calcium availability. Physicians don't know anything.

Use Epsom salts for the magnesium, as we discussed. Its cheap and its very bioavailable. try foodscienceofvermont.com for the 70% EGCG.

Steve

Hi, Dr. Steve:
Okay on the oil.

About that magnesium...

I changed my diet a while back to reduce protein and add more fiber. I had been taking a mild laxative since I was diagnosed and got on the HIV meds because of a tendency towards constipation.

Unfortunately, I seem to have overcompensated, and am having occasional bouts of diarrhea. Adding any magnesium to this seems unwise. I did buy the Epsom salts but have not had the courage to try any. I am not now taking any fiber as such, but with the reduction in meat consumption found that I had to eat something, and that something is veggies mostly, also complex carbs. I don't normally eat simple carbs such as sugar and Styrofoam bread.

How do I get to a point where I dare add magnesium? As I mentioned before, I take the bus a lot and don't have anywhere to dash into on short notice. This could be unfortunate. (Blanche)

Blanche:
Take a quarter teaspoon and see what happens. Take it at night. If there’s a problem, you can deal with it at home. If that’s OK, take a 1/2 teaspoon. You can't avoid taking magnesium because it’s very important. But I do understand your problem.

Steve

Hi, Dr. Steve:
Wax on, wax off.

Finally got the EGCG. Went back to check dosage on the Kocktail and ran into a minor roadblock.

On Thursday, March 18, in your first discussion of curcumin, you wrote: “Take 5 grams curcumin twice a day and 1 gram EGCG twice a day.”

Okay.

Then, on the 19th, you say: “take 5 grams of curcumin and at least 2 grams of 70% EGCG polyphenols a day. You can take more if you wish. They aren't toxic and in your case they certainly won't hurt.”

No problem with the EGCG; both instructions boil down to 2G/day.

With the curcumin, however, dosage is a bit more confused. Do I take 5G 2x daily? 2.5G 2x daily? 5G once a day? Also, I'm assuming the Kocktail is taken in two doses to keep the concentration up. Once a day would certainly be easier; please let me know if that is possible, whatever the curcumin dosage actually is.

No hurry on this; I'll be taking 2G of curcumin and 500mg EGCG twice a day for a few days anyway to see how I tolerate them. I will be using 1/2 cup of coconut milk (49% saturated fat; the most I could find) to get this stuff down.

Otherwise, I'm up to:

NAC=3G

ALA =2G

acetyl l-carnitine = 2G

Inosine = 3G

melatonin: back to 12mg/day. Once I got used to the morning dosage I quit nodding out.

I am so ready for this. – (Blanche)

Blanche Dearest,
You know I advise a number of people with HIV and you are my favorite. Many people are very whinny and their psychological state is going to be a problem in their treatment because of the stress factor. You just have this "fuck it" attitude which I really admire.

The problem with the protocol, if you want to call it a problem, is that there is a general protocol for asym and sym HIV states, but no one treatment is perfect for every person. Everything has to be modified a bit. You are the first person I've dealt with who is coming off meds. In one case that is great since we aren't fighting a low CD4 and high viral titer, but I always worry about what is called the rebound effect. You know, the meds come off and the virus shoots up immediately. I want you completely stabilized before we attempt to knock off all the viral reservoirs in your body.

You must take at least five grams of curcumin, but you can certainly take more. These are once a day numbers. So 5x 500 mgs caps twice a day should be good for now. Yes, the kocktail is taken twice a day to keep the numbers up.

The one drawback is that you will probably turn yellow from all the curcumin. Hope you don't mind. Just tell everyone that you have fulminating hepatitis B and watch them run. I have a bit of a twisted sense of humor.

Keep one thing in mind. Compared to liver and pancreatic or brain cancer, treating HIV is a walk in the park. At least, the treatment protocol is simple.

Keep plugging. You will be fine. And you'll be famous. Its funny, but on the cancer folder the primary essay talks about a woman named Anna who had stage four metastatic breast cancer. It had broken the skin and was eating her chest. She's been working with us for about 2-3 months. Her body is now clear of all tumors except the primary lesion and that is drying up and becoming normal. She said one of her physicians told her she was in effect a walking medical mystery. She is going to be famous and so are you. Keep a diary of your experiences because you can write it up for publication. I am serious. You’ve gone through hell, abandoned by the state, and you didn't die. People need hope.

Have a good weekend. I started the morning by burning up my stupid, no whistle tea pot. I hated that pot anyway. Got to get a new one today.

Steve

Hi, Dr. Steve:
Happy Monday, probably. I mean it's happy and probably also Monday by the time you get this.

I know what you mean about the teapot; that's why I don't keep fish. I do raise plants. I keep one that is prone to melodrama when dry in a very visible place. If you can picture a plant with its hand up against its head, Scarlett-O'hara style, you have a good idea of how this greenie behaves. When it goes into its act, I water everything, and everything thrives. By all means get a teapot that whistles.

I'm glad you like my attitude. Most of the doctors I've dealt with in the last five years find me altogether too frivolous. They think I'm not firing on all cylinders because I'm not depressed; that's depressing.

With any luck we will never even be aware of any viral rebound. I am getting blood work right before running out of meds. I get tested every three months. Unless my earlobes fall off or I develop a sudden inexplicable urge to catch flies with my tongue or something, any spike may come and go without notice before the next test is due.

Yellow: Oh, fine. Here I avoid telling people I have HIV because of the "typhoid mary" effect, and now you want me to use the old fulminating hepatitis B excuse! Couldn't I just say I was the victim of a tragic accident while dyeing Easter eggs? Or, I could save my dimes and nickels and get plastic surgery on my eyes. Fix them so that I look Chinese and get my budding crow's feet removed as a bonus!

Here's the winning idea: find some inexpensive, neutral or beneficial supplement that turns the skin lavender. The combination should in theory produce a fetching warm brown. Hey, we could make a mint! People are always looking for a way to look healthy and tanned without exposing themselves to all that nasty UV! Eat curcumin and (some mystery substance) and get that outdoor look without damaging your skin!

I am keeping a journal, although so far it doesn't contain much, just the baseline stats (which I'll update after the upcoming blood test) and a record of what I added when. Incidentally, I never really wanted to be famous. Rich would be good, though. I have to find that "lavender skin" stuff! -- (Blanche)

Blanche:
You and I are going to let along just fine. Unfortunately, you aren't actually going to turn yellow but I know what you mean about the "tan without the burn" mentality. The sunless formulas all contain walnut oil and that’s what turns the skin brown. I don't care what they say…it turns my skin orange and that is freaky looking.

My friend Anna, the breast cancer patient, sent me a scientific article that I couldn't get showing how curcumin shuts down the biochemical pathway known as Janus kinase-Stat. Of course, I know you are familiar with this pathway. Anyway, I couldn't believe what I was reading. This is a major pro-growth pathway and curcumin, the little yellow dye that said "I think I can", shuts it down in about four different areas. This is important for us because both CCR 5 and CXCR4 receptors on CD4 cells need to activate this pathway. This has direct applications for HIV and huge implications for all forms of leukemia. I had a little too much "medicine" last night to celebrate.

Curcumin and EGCG from tea never cease to amaze me. They are truly God's medicines.

You are right, if there is a spike, it will not be noticeable. Glad we are getting some baseline info, but too bad we have to wait three months for another test.

You know, I think there was a product on the market that changed the color of skin when orally consumed. I don't think it caught on.

Trust me, write up your experiences, all of them, in your battle against HIV and I guarantee you that you will be both rich and famous. You have an important story to tell that will give hope to others. And deservedly so. You are obviously very literate. I'll write it with you. That’s what I am doing with Anna.

My regards to your plant. They are soooo emotional. I have a plant near my computer that I swear leans in to see what I am writing on the computer screen. Damn plant probably works for the Feds. They already hate me. Maybe they planted some kind of small device in my plant that gives it instructions to spy against me. Maybe I should just forget about this subject and have a drink. Yes, I think that would be best.

Steve

Hi, Dr. Steve,
I'm getting my blood test today and will start the Kocktail on Tuesday night. My meds will stop on Saturday. I'll be starting with 1G curcumin and 500mg EGCG twice a day, gradually increasing to be at 2.5G and 1G 2X daily by Saturday. I'm a picky bitch, so just to make sure I'm on the right track, here's a few last-minute questions:

1. I'm getting the coconut milk in 13.5oz cans, as it happens; that's just the way it comes. Question one is: can I make three batches at once, using 12oz of milk, and then reheat to use? It would save a lot of time on hurried mornings.

2. If I can reheat, will the cucumin and EGCG stay in solution or do they have to be reblended, or will the reheating do the trick?

3. I went to the net and read Anna's story, because I found your account interesting. If I ever need a role model for optimism and courage, she's my first choice! I did note that in the article it was mentioned that

she had to put milk in the coconut milk to cool and thin it. Do I need to do that? Could I use juice? I bought some V8 peach-mango; thought it might cut the nasty; is that acceptable? The better the stuff tastes the easier it will go down.

4. Magnesium: Since you advise that magnesium is really important, I have developed this strategy: one teaspoon of magnesium is no problem if I also take an Immodium tablet at the same time. Is there any problem with this? I mean, I'm too young for Depends and some forms of social embarrassment don't bear thinking about...

5. Taking the magnesium with OJ as suggested. Don't much like the taste, and would like to reduce the number of "hold your nose" incidents in my life. Is there a reason for the OJ in particular? I was wondering

whether or not I could just put the magnesium in the Kocktail right before I take it; there should be enough liquid in it to dissolve a water-based compound. After all, it apparently already tastes nasty; the magnesium can't make it appreciably worse, and that would mean I only have to hold my nose twice a day. Can I combine the magnesium with the Kocktail?

I'm still increasing the dosage on NAC and Inosine; up to par on the others.

I'm afraid I must be just a tad behind on my reading. "the biochemical pathway known as Janus kinase-Stat." is a new one on me. An enzyme that dissolves kines (that's an old word for cattle; a cure for mad cow)? Or maybe kin? My sister bugs me sometimes... However, the comment about the CCR 5 receptors is hauntingly familiar. A couple of years ago, I asked Santa for a reverse-engineered Delta 32 mutation, and this is basically it. As I'm sure you're aware, the double-dipped version of the Delta-32 mutation (in addition to making the owner immune to bubonic plague) also allows CCR 5 receptors to ignore the blandishments of HIV. I'm not as familiar with the behavior of CXCR4 receptors, but must assume from your note that they are another unguarded doorway into the cell nucleus. Every locked door is a blessing.

Actually, up until now at least, “HIV and me” has been a very boring story. Almost died. Diagnosed with HIV and a plethora of opportunists. Put on medication. Told to "go home and put your affairs in order." This really pissed me off, because I had just spent three distinctly unpleasant weeks in the hospital, and if I was going to croak anyway, felt that could have been accomplished at home without all the fuss and nonsense. Decided that since the three weeks was already spent, I was absolutely not going to waste them and therefore was not going to die. Didn't.

(Strangely enough, my "best case scenario" had me dropping dead in five years, which would be this April 19. This is oddly close to the date when my meds run out. Almost like these people are trying to do me in, eh? Well, we'll fool them. I plan to do not as well but better on this regimen; serves 'em right.)

I responded very well to the medication and had less trouble with it than I was led to expect. After five years, I was still on the original medication; no resistances yet. You have already heard about the snafu

with the government and the medication. Truthfully, I am rather grateful for the bureaucratic bungling. I was never happy with taking what amounts to chemotherapy to fight my HIV. Note: I was on Procrit for a while; I'm not kidding about the similarity to chemo.

It seems that the pharmaceutical industry would rather treat than cure, and the fact that the treatment is often ineffective and sometimes deadly doesn't seem to be a problem for them. I suppose it allows them

to sell medication to treat the side effects of the medication (to treat the side effects of the medication...). I have never believed in using a cannon to kill cockroaches, and that's what I think of the HIV meds.

Sure, the bugs are gone but the house now has a significant number of large, unsightly holes. There had to be a better way.

Not turning yellow? Does that mean I don't really have to wax your car either?-- (Blanche)

Blanche:
I see no reason why you can't mix up a batch and put it in the frig. If the curcumin and EGCG come out of solution, and if heating doesn't remix it, we'll have to go back to the old way of making it up fresh.

You can dilute the coconut milk with anything you want. When the coconut milk cools, it turns in a thick mass so diluting it with something helps get it down. Unsweetened apple sauce or a little lemon juice in water will clear the taste out of your mouth afterward.

Good tip about the Immodium tablet.

Take the magnesium with anything you want. I just suggested OJ. Take it with the coconut milk if you want.

One tip, find some inexpensive sodium selenite 250 microgram tabs. Selenium seriously impairs HIV synthesis.

I didn't expect you to understand the Janus pathway. It is very important and finding out HOW curcumin inhibits it is very interesting.

Look, your story may be boring to you but not to anyone else. You've had a wild ride and you're coming out of it fine just like Anna. Only her problem was much worse since there really are no drugs to help her. You are also VERY funny and a good writer. Seriously, think about it.

In the interim, try to stay out of trouble.

Steve

Hi, Dr. Steve:
My mouth is a registered weapon. As for your weird email address, I'm not even going to comment on it, except to ponder whether this is a reference to Golding or to good ol' Beelzebub himself. Some things man (and/or woman) was not meant to know...

So kinase doesn't dissolve your relatives? Darn.

Meant to mention: iHerb.com is a great place to get everything but the EGCG at a semi-decent price. They have EGCG but not, alas, in 70% concentrations. Their base price is pretty good, and they have discounts for things like repeat customer, quantity order -- free shipping at $60; 10% off and free shipping at $120. There is also a bigger discount at $240; I forget what. Once I get my quantities/month organized, I should be able to place a whopping order every 2-3 months and save quite a bit. They also have a "sale" page; sometimes you get lucky and your stuff is there. My only caveat is check quantities/dosage etc; sometimes the labeling is a bit deceptive unless you are really paying attention. This is the manufacturers, not the site; they are up-front and appear to actually be human.

You can probably get individual items cheaper at other sites, but then you have to pay shipping. This seems to work out to the most milk for the moo (unless you use kinase, I guess. Then your cows dissolve or something). If someone is on a regimen that requires so much of this, so much of that every month, iHerb is a good way to go.

Don't worry about me. YOU stay out of trouble. – (Blanche)

Blanche:
Me, the Infamous Dr. Steve, stay out of trouble? Consider this. I am effectively using cheap, safe natural products and OTC products to treat even grotesquely severe cancer. This pretty much puts much of the biotech and pharmaceutical industries in a bind. And the HIV drugs are useless also. I am not going to suffer. I don't charge for anything. People believe there is no alternative to expensive toxic drugs. They are wrong.

So if I die of mysterious causes, I told my family and friends to demand an autopsy. Big Pharma isn't going to go down quietly. They are going to want to take me with them.

This really isn't a joke you know.

Steve

Hi, Dr. Steve:
I'd be more afraid of dread legal-counsel weasels than anonymous hitpersons. They will sue or try to discredit you. So long as you are making a minimal impact on their P&L's, you're okay. Stay under their radar as long as you can. You should be absolutely safe until the waves you are making get much bigger. Save the adrenalin for when it's needed. – (Blanche)

Hi, Dr. Steve,
Made up my first Kocktails today; it went better than I expected, although it can sometime be a real bugger getting the caps apart without the infamous "potato chip bag syndrome." I did four servings at once;

tomorrow morning I'll find out whether or not this was a good idea, and just how much trouble getting everything re-acquainted will be.

The word for today is: V8 Splash Smoothies (Peach-Mango)

I saw this on the grocery store shelf and heard a voice. No, not "Save France !" Hunch was right; this cuts and cools the Kocktail and the combination (at least at half dosage on the curcurmin & EGCG) doesn't

taste badly at all! If there are others who are holding their noses twice a day, this is well worth trying.

The cans of coconut milk (with the big globs of fat in them as per instruction) are 13.5oz each. I put in enough of the juice to make an even 16oz. This is cheating the 1/2 cup of coconut milk just a hair; if

that's a problem I'll have to find another solution. I just put it all in a measuring cup and whisked the curcumin/EGCG into the coconut milk. Then I put it on the stove. It didn't really take long to get everything into solution. I then put 4oz in a cup and the rest in a sealed, glass container in the fridge. I cut the 4oz with more of the V8 stuff and it went down quite easily, tasting more of coconut than anything else.

Of course this is only 1/2 strength. Thursday night I'll do another batch at 3/4; the next one is up to recommended strength. I take my last pills Friday night, so this is working out rather well.

A scheduling difficulty prevented my getting the blood test on Monday. I'm going tomorrow (Wednesday) instead. So far, so good... (Blanche)

Note: It might be worth mentioning here that acidic liquids such as fruit juice are a major no-no for mixing the Kocktail. Dr. Steve and I got our wires crossed -- Blanche

Blanche:
Sounds good. Potato chip bag syndrome? Sorry but I don't understand. We scientists take ourselves very seriously and don't understand jokes very often.

Steve

Hi, Dr. Steve,
It may be because you are a man rather than because you are a scientist. We weaker folks have this problem with potato chip bags that goes like this:

1. attempt to open bag by pulling sides apart; nothing happens

2. try harder; still nothing

3. harder still; bag still closed

4. yank madly on bag. Bag flies apart. Potato chips are launched on escape orbits.

This not good. It is worse when it happens with little capsules containing intense orangey-yellow dye stuff. One must practice Zen capsule opening.

Heaven forbid I should comment on the “we scientists take ourselves very seriously...” line -- (Blanche)