Question for John in GR

[tahoedonner]

Hi John….

Glad you are still tuned into Quackwatch….lots of good stuff for you there!

Here is my question….My MD has me get red cell infusions when my hemoglobin falls below 8 and this, so far, brings up my counts…can you recommend a good “natural” (like red cells aren’t) concoction that will do as well? I am open to teas, berries and nuts but please no bear gall or pork liver or other “natural” stuff like that.

The infusions are no big deal. I enjoy the time to read and chit chat with the oncology nurses. The only problem I have is that I when they offer snacks, I opt for tomato juice rather than apple or orange and that really grosses people out!

Didn’t get your reference to the spotted owl….do you nuturopaths eat them as a “natural” MDS cure or what?

[Terri]

Hi Tah sure John will have some excellent advise. Our nutritionist has Bob on a healthy diet trying to eat a lot of frest veggies, fruit but also includes the red meat for the Hgb and red cells. We probably don’t do as many naturals as John but Bob takes quite a few supplements including B12 and B complex both good for the RBC and hgb. You might want to try some Supplements for the Immune system to give you a boost as well, Bob does the AHCC but their is also a product out there by Garden of Life I am sure John will know. Also the three mushrooms (Bob does pill form) John I think does a tea form. I also use some in cooking as well.
I hope you start seeing pick up in the HGB. Bob’s was up to 11.4 this past weekly cbc.
How is the vidaza doing.

[John in GR]

Hi Tah,

I think Terri’s comments are excellent. I am a strong advocate of the red meat routine. Beef, lamb, wild game, such as venison, etc. Range fed if possible.

I drink mushroom tea in alkaline water. I also think you need to push yourself a bit on exercise as I think that encourages the body to deliver more hgb.

Procrit is also an option.

Of course, I am also a strong advocate of enzyme supps and coffee enemas.

Some of the stuff I am doing may be absolutely worthless for me. The other side of the coin is that some of the stuff I am doing may be very helpful. The problem is that I don’t know which is which.

It’s like trying to put a puzzle together. Each one of us is different. What works for me might or might not work for you, and vice versa. There are patterns, however, both in conventional medicine and all my quackery.

My particular peculiarity is this Sweets Syndrome thing. When it hits, my blood values go in the toilet. It hit in March bad and was finally resolved w a round of prednisone. It started up again recently, so I’m once again on a round of pred.

My hemadoc recommended tx when I went under 9.0 but I refused for a couple of reasons. First of all, I suspected that it was the prednisone that I needed to knock the Sweets down. Second, I was still functioning well physically. I think the exercise might be at least a part of an explanation for why I am able to still function well even in the face of this Sweets (apparently) induced hgb drop.

Iron overload unfortunately accompanies tx. This new drug Exjade might provide a real benefit to alleviating that problem. But it’s not here yet.

And so, I don’t accept tx unless my body tells me I absolutely need it. Don’t let an arbitrary number dictate whether or not you need a tx. Let your body tell you. On the other hand, don’t punish yourself. If you need it, you need it.

Except for a super nasty time in March 2005 I have not needed it.

I think all the stuff I’m doing may have something to do with that.

BTW you recently said that you figured you have about a year to live once you start tx. Don’t believe it. Only the good die young. You’ll probably live to 100.

John

[patti]

Tah,

I’ll chime in here. My MIL takes organic beef liver extract for her reds. It’s a pill like a vitamin so no big deal to take. I can find a place for you to buy it if you’re interested. Also, recently she started procrit and it’s working! I show surprise because she took aranesp for 9 months and it did nothing. I am surprised they transfuse you at 8. Do you feel bad? They don’t transfuse mom until about 6.5 or 7 but she always feels good. So she’s either lying or has the grace of God on her side for her dependent daughter.

John, I am surprised you can’t tell what’s helping you. We can really tell with mom what works and what doesn’t. She takes a lot of actual pills/tinctures but we can almost always tell what’s helping and what isn’t. We farely regularly go through her routine to take stuff out and add stuff in depending on how she’s doing. We’ve also done some process of elimination stuff which helps.

Tah, I’m encouraged by how long you’ve had this. We originally didn’t think mom had 6 months and now I’m thinking maybe we have many years. Whew! What a relief.

All the best,

patti

[John in GR]

Organic beef liver extract sounds like a good supp. Organic beef liver lightly grilled is also excellent.

I do get feelings about the effectiveness of various protocol items, and do add or delete items, But it is not possible to prove what is helping.

john

[tahoedonner]

Hi John….

Coffee enemas???? Do you recommend regular or de-caf? What temperature? Can you use iced coffee on a hot day? What about sugar and cream? Would a Starbuck’s Frapachino work?

Got another question for you. Last year my MD gave me six months to live so I maxed out all of my credit cards, rented a Lear Jet for a swinging trip to Europe, really did Paris well, but got taken away at Lake Como and bought a villa there overlooking the lake. The problem now is that I am still in pretty good health but the credit card companies and a lot of irate husbands (how was I to know that so many of those gals were married?) are all coming after me! My question is, do you think I should sue my MD for malpractice for misleading me and get him to help pay for the jet, the villa and all the other stuff ????

Grilled liver? I guess it’s OK if you want gout! Been there….got that!

I was thinking of flying (still got the jet) down to Crawford, Texas and maybe treating all the good folks camped outside the ranch there to a Frapaccino enema or two….maybe that would help to chill out the situation a bit.

Stay well!

[tahoedonner]

John….

Just read that someone back in Grand Rapids stole Dorothy’s ruby slippers from your Judy Garland Museum….hope it wasn’t you!

[Terri]

Thank you Tah and John for the much needed humor. I get a kick out of reading your back and forth banter.

Tah, Hope you are doing better, have you decided on adding any Alternative supplements/vitamins to your regimen.

[uno grasshopper]

Ha ha ha! Come to think of it, Cheri was wearing some cute red shoes when you came to visit LA, John. . .

I know we’re partners in crime, but you seem to be holding out on some of the loot.

Marla

[Fran]

I would love to hear from anyone regarding help with my husband. He is 73 and was told that he has MDS. Now we don’t know what to do? At this time he feels fine…just a little tired at times. What is Procrit and how do you get it. He is going to a 2nd Onclogist next Friday.

help

fran

[John in GR]

Why do I always attract the weirdos?? This Tahoe Donner fellow I think needs to spend a little more time at sea level. My Dr. Quack diagnosis is that lowered hgb combined w thin air can push fringe washed up hippies who spent too much of their lives at Haight Asbury (sp?) into true space cadets. I’m starting to get a little worried about the unfortunate Mr. Donner who is still a card carrying Democrat, by all reports. Unfortunately, he seems to be proving my theory.

BTW Tah, I do not recommend coffee enemas for everyone. In your case, for example, I suggest unleaded gas. I heard you were a real cheapskate and were sore about the rising price of gas. Depending on your retention time, this might provide a way to store some up in case the prices continue to rise.

Also BTW, have you ever stopped chasing skirts in Europe long enough to consider the possibility that you and your cohorts who have fought every new oil and refinery plan for the last 40 years might have anything to do w the present energy situation??????????

Of course, of course, Tah, I understand completely. How could I be so foolish as to even consider that millions of people might be more important than a few spotted owls etc etc.

Please be careful, Tah. All this fooling around in Europe is nothing to ‘clap’ about.

John

[patti]

Hi John,

Out west here we have a saying about spotted owls. It goes something like this: save a tree, wipe your bottom with a spotted owl.

It’s a little more crass then that, but my internal constraints won’t let me write the real words.

Preach the oil, brother! I keep waiting for drilling in Alaska.

patti

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