[John in GR]

I don’t think it’s an issue of researchers being immoral. They are doing what they can within allowed parameters. They are not allowed to go in any direction they might be inclined.

For example, in 2001 I visited Dr. Raza at Rush Presbyterian Hospital in Chicago. Dr. Raza indicated to me that she had no objection to people pursuing alternative remedies and wished me well. Dr. Raza’s staff was involved w MDS research. I asked Dr. Raza why she didn’t reserve at least a part of the research staff to either validate or disprove various alternative remedies. To that she explained that she could not because the research monies she received would not allow for it. hmmmmmmmmmm. I don’t blame Dr. Raza. She had to pay her help. I do blame the funders who place such limitations on the researchers.

We’re fighting another war with one hand tied behind our proverbial back. I do blame the funding organizations for that who seem to bow to the will of Big Pharma.

Is the success experienced by myself, Marla, Bob and others a fluke? Is my bon vivant friend Tah right?? Under the current system, who knows when we’ll know for sure.

John

[John in GR]

To my understanding, a person is transfusion dependent if he needs and receives transfusions on a regular basis to maintain a level of functioning that is acceptable to him.

John

[John in GR]

Thanks, Lindajo,

Wondering what supps you might have been taking to excess.

John

[John in GR]

I agree Lindajo, your story is fascinating. Have you done any special diets, alternative or conventional therapies? In other words, is there anything you have done or not done which you believe has contributed to the success you have enjoyed???

Thanks in advance for any help you can give.

John

[John in GR]

Perhaps having a BMT/SCT is the absolute best decision your daughter can make. Her chance for success is certainly better because of her age. Furthermore, her condition has unfortunately crossed over to AML.

On the other hand, I certainly wouldn’t ignore the warnings re side effects. Ask direct questions such as the 1,2,3,4 or 5 years survival rate post procedure. The warnings are there because that is what has happened to other people.

My prayer is that God will grant you and Keelyn wisdom beyond yourselves re this most difficult choice.

John

[John in GR]

Excellent comments above. I hope my earlier statements are not being misinterpreted. I have great respect for the medical profession. One of my sons is a medical doctor trained at the U of Michigan. I am very proud of the work he does.

I maintain, however, that doctors generally are not schooled on issues of nutrition and alternative approaches. I think that will change down the road. I hope it will.

I thought I made it clear in my earlier post that I have no issues w anyone about their choices. I am assuming that people are making the best choice given the facts of the particular situation. The last thing I want to do is to make people feel bad for decisions already made. My only point is that people should educate themselves re the options that are out there so that the best possible choices are made.

I agree w Kathy1 that we should not bicker. In the context of always respecting each other, however, I do think we should welcome and respect different points of view. I believe that we all have sympathy and empathy for all who are touched by MDS. The scope of our collective experience, freely shared, allows us all to gain information and support we might not otherwise be exposed to. Thank you one and all. I wish each of you only the best.

John

[John in GR]

Strong medicine Patti. Preach it girl. Tah, are you out there?? are you listening??? Are you reading??? Well, I’m afraid Tah is off reviewing the latest from Quackwatch, or perhaps figuring out how to get Hillary elected in 08, or maybe he is following up on my suggestion re obtaining medical advice from his shoemaker. On the other hand, he could be off to Washington or Oregon throwing himself in front of a lumber truck, doing his part to save the spotted owl.

John

[John in GR]

The problems Marsha discusses are some of the serious problems associated w SCT or BMT. While I have no issue whatsoever with people who choose this or any other treatment, for me BMT or SCT will be the last, not the first resort.

I was advised by a respected hema at U of Michigan that I had statistically one year to live unless I submitted to a SCT. I declined because my research showed that statistically there is no benefit longevity wise to doing a SCT. If I had only one year, I preferred to not be sick the whole time. You will be very sick, and the treatment could kill you.

That conversation w the hemadoc occurred in 2001. If I die tomorrow, I will be satisfied w my decision. I’ve had 4+ really good years except for one month dealing with Sweet’s syndrome. My approach is nutritional and alternative. So far God has seen fit to bless it.

SCT is currently said to be the only cure for MDS. Some have gone through that door and enjoyed a cure. I cheer with them. Unfortunately, the success stories are greatly outweighed by the tales of those who have fallen. Sometimes, their demise was hastened by the effects of the treatment.

My purpose is not to frighten but to encourage people to carefully examine SCT and other treatment options. Do not believe the doctor who offers SCT as your only chance for extended life.

Even if you become transfusion dependent, the biggest complication from multiple transfusions which is iron overload might be able to be reasonably controlled by Exjade if it’s as good as reported.

In any case, regardless of the choice of treatment options, I absolutely hope for the best for each person, even you Tah.

John

[John in GR]

Hi Meadowmuffin,

Essiac tea was formulated by a lady whose last name was Caisse; Some have had success w it, but I certainly wouldn’t hang my hat on that alone. Check what is out there. A great starting point for me was a Ralph Moss report re available remedies for MDS. I am currently following a program which is similar to what is presented at http://www.geocities.com/marlakins/index.html I do not use Essiac tea because of mixed reviews, although I am unaware of any harm it might cause.

John

[John in GR]

Hi Russ,

In 2001 a doctor suggested that I quit work, go on disability, and have a SCT. I chose to go another direction and am still working.

If you feel fulfilled and are physically capable, why quit? I disagree w your doctor’s advice. You should give up your work when you are ready. Perhaps your doctor is concerned about risk of illness because of your interaction w many people. If you and your family are comfortable w that risk, then so be it. If you are not becoming ill frequently, then your resistance is apparently still functioning adequately.

On the other hand, you are 56 w a serious illness. I suggest you take time off when you can. Stop and smell the roses. Look for opportunities to use the skills you have developed to help people outside of the work context, so that when the time comes to move on you will have a bit of a transition in place.

John

[John in GR]

Dear Tah,

I have researched your Nutritionist’s advice extensively, and must disagree. It is my understanding that according to Quackwatch, shoe polish should only be used topically as prescribed by your shoemaker.

I did have a very nice fourth, thank you.

John

[John in GR]

Thanks Karen,

Thanks so much for your very professionally written letter. We need to be pursuing help from all directions.

John

[John in GR]

please use my name.

John Hess
Grand Rapids, Mich

[John in GR]

Tah and I have gone round and round re the quackwatch thing. Don’t assume that quackwatch is full of only good info.

In my own mind, if I had followed quackwatch, I believe I would be dead. Can I prove it??? NO. But show me the absolute cure in conventional madicine with a survival rate better than doing nothing and I’ll listen. Many (myself included) have ignored the Quackwatch misinformation. Do you really think you’ll do just as well on Big Macs, cokes and fries as on good meat and fish protein and raw fruits and veggies etc??? Do you really think diet makes no difference???

My basic approach is that I am willing to try things that will not harm, but might help. Right now I’m trying, among other things, infrared hyperthermy. Am I wasting my time and money?? Frankly, it’s too early to tell. I don’t believe it’s going to hurt me, so I’m giving it a try.

I completely agree with the above posts that you need to do your own research. Part of your research is evaluating what is presented on this forum.

Kristyk and others, you might want to check my friend Marla’s website where her story re recovery from extremely serious aplastic anemia and my story and diet (current as of a year ago) is presented. I also am continually tinkering w it. http://www.geocities.com/marlakins/index.html . It surely was fun for my wife, Cheri, and I to get together with Marla and her family. Even ‘quacked out’ nutritional weirdos can have fun. Maybe it’s because we just don’t know any better.

Have a great 4th. Especially you, Tah.

John

John

[John in GR]

Please add mine.

John Hess
Grand Rapids, Michigan

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