[John in GR]

Jerry, Chris and Patti,

Jerry, you win the bet. Your assessment of my butt lesion is 100% accurate. Dr. Kou’s poultice seems to be doing the trick, thankfully. It certainly feels a lot better to be solving the problem w some yucky looking crap than shooting up cortisone and taking nasty drugs.

Chris, I think your question is very legitimate. I also think Patti’s response is very accurate. Although Dr. Kou has been in this country 9 years, and although by his own admission he likes working with blood disorders, I don’t think he’s very good at advertising his expertise. He has a small office and treats a myriad of disorders. Patti’s MIL went to Dr. Kou through a referral, but had difficulty finding Dr. Kou. In any case, Patti sees Dr. Kou more often than I will, so thanks, Patti for covering me on Chris’ request.

John

Y

[John in GR]

Cheri and I will be leaving Thursday and coming back Monday. I will be most happy to share my experiences. We’re all looking for answers, aren’t we?? I am grateful to Patti for sharing w me her knowledge re Dr. Kou.

That’s how we help each other. We’re all a bunch of pilgrims.

John

[John in GR]

Dr. Kou, who Patti is referring to is the gentleman Cheri and I are flying out to see this coming weekend. My understanding is that Dr. Kou studied blood disorders and Chinese herbal medicine in China and has worked w other MDS patients besides Patti’s MIL. Dr. Kou apparently has a bit of a national reputation.

BTW I can function pretty normally at 8 including work and activities involving exercise. I do better at 10+.

Cheri and I are hopeful that Dr. Kou can help me with my Sweet’s Syndrome (sores) and MDS. I am on prednisone, a harmful drug to control the Sweets and have needed a total of 11 units of blood; of course I would like to avoid continuing down that path, if possible.

John

[John in GR]

I also agree. I do think, however, that it is rather unscientific. I do think it is a fair question for those contemplating SCT or a variant to request the statistics for the facility and in general for the one, two, three, four and five year survival rate for similarly situated individuals.

John

[John in GR]

Dear Greg and anyone else who may have been offended by Patti or my comments “ripping'” the SCT and (God forbid) questioning the logic of getting one. Greg, did you read Pierre’s initial post??????????????? Did you really read my post??
Did you read the part that said that a perfect match was a plus????

Why is it that after Pierre solicitated comments re the SCT I get hammered for giving mine????? Did I hammer you for your opinion??? What is it, the SCT is off limits for criticism??? All I said was ask about survival history. Is that so terrible that you have to be “offended” ??????????????? Is that a bad question to ask your doctor and facility??? Isn’t that exactly the question Pierre is posing???

You seem to think that when I’m giving my opinion, I’m trying to cram it down your throat, so I’ll state my opinion on that one time. Hopefully you will understand it and find someone else to go after, if that is your predisposition.

I BELIEVE EVERYONE SHOULD DO HIS OWN RESEARCH, GATHER INFO REGARDING ALL TREATMENTS, CONVENTIONAL NUTRITIONAL AND ALTERNATIVE. EVERY SITUATION IS UNIQUE. HE MUST THEN MAKE THE DIFFICULT DECISION OF HOW TO PROCEED. IF HE OR SHE IS MARRIED THE SPOUSE SHOULD SHARE IN THE DECISION. ONCE HE DECIDES HE SHOULD PRESS FORWARD AND NOT LOOK BACK. REGARDLESS OF HIS CHOICE, I WISH HIM WELL. I DO NOT PRESUME TO TELL ANYONE WHAT HE SHOULD DO; IT’S NOT MY PLACE.

If you need further clarification, I’ll do my best. Hopefully, you’ll quit misinterpreting my comments in the future.

Just because I’m still alive does not mean I have been immune from difficulty. For the past year I have struggled with something called Sweet’s Syndrome, an outbreak of nasty sores accompanied by a drop in reds that has on occasion required blood tx. It may or may not be related to the MDS. With the Sweet’s as well as with MDS I am most interested in nonharmful approaches, although at this time I am using prednisone (a harmful drug) to control it. That’s my approach. In hopes of finding a better approach I am travelling to Portland Oregon in about a week to meet with a Chinese herbalist who specializes in blood disorders. IS THAT OK WITH YOU GREG, OR AM I OFFENDING YOU?????

DISGUSTED IN GRAND RAPIDS

[John in GR]

In 2001 I was diagnosed w MDS. I was told by my local hem about 3 years. I checked out U of Mich and was told about 1 year if no SCT. My research lead to the conclusion that SCT DOES NOT EXTEND LIFE. I was 54 at the time. For me, SCT would be an act of sheer desperation. I look for treatments that are not in themselves harmful or even fatal.

I would welcome such an approach conventionally, but unfortunately that is not available. I have no second thoughts re the alternative and natural approaches I have chosen. I am now five years post diagnosis and praying for 20 more. I joined the forum in 2003 and had this discussion w many who support and have gone through the SCT. Unfortunately, most are no longer around to carry on the discussion. Jimbob was in a desperate situation. That is the only thing that would convince me to go through with it.

I don’t understand what a 20% relapse rate means. For me the most straightforward statistic is the the two, three, four and five year survivor rate for similarly situated individuals. Ask your doctor that. It may be an eye opener.

I do accept that conventionally a transplant is the only cure. I do not accept that the transplant is the only cure. I am busy praying and searching to find wherever it may be. So far God has sustained me.

Best wishes as you make a most difficult decision. You are doing the right thing in searching out differing viewpoints.

The fact that there is a perfect match is important. I have a sister who is a close match, so the option is available to me.

John

[John in GR]

Thanks Patti,

Most interesting.

John

[John in GR]

Hi Patti,

WOW. This is the kind of approach that is definitely worth pursuing. It surely fits my strategy– a potentially significant upside, with no significant negative side effects. Very exciting stuff. I’d like to talk to this gentleman.

John

[John in GR]

That was truly beautiful, Jimbob. My sentiments completely.

John

[John in GR]

Hi Caroline,

I think a team approach is good; I would include a good dermatologist. If your father hasn’t seen one I would get the referral and have the various doctors communicate.

John

[John in GR]

Awesome discussion. I’m totally impressed. Lots of study; great interaction. Gonzalez has 10 different diets, I understand, based on a battery of tests. One size does not fit all. In general, however, Dr. G does advocate a meat protein diet for those w blood related disorders. I consume a lot of meat.

Seekay, I have family a friends in the LA and San Diego area. It might be fun for you, Marla (who lives in the LA area)and I along w friends and family to connect for lunch when I’m in town. Marla and I have done it for the past couple of years. I certainly have benefitted and Marla has graciously put up w me.

John

[John in GR]

Hi Terri, Patti and GL,

As a matter of fact, all is very very well. In terms of my nutritional approach check out http://www.geocities.com/marlakins/index.html . I am very high on the Gonzalez approach. I have also enjoyed God’s touch in terms of divine healing. I discussed that in a posting “Where’s Tah and John in GR”. (Feb 7)

To those of you who are newer, Tah and I had lots of fun throwing barbs back and forth. I hope Tah is doing well.

John

[John in GR]

Hi Ani, Patti, Tah and y’all.

Thanks for asking about me. I have been doing well since I crashed w the Sweets Syndrome thing last March. I haven’t participated much in the forum of late because I’ve kind of shifted my focus. After my 2001 diagnosis and attending 1-3 year lifespan prognosis, I worked very hard w the generous help of others to develop non toxic natural approaches to combat this disease. I did very well (see http://www.geocities.com/marlakins/) but took far too much personal credit.

Then I crashed in March 2005 with something called Sweets Syndrome. A stiff dose of prednisone brought me out of the tailspin. My values, however, remained low although I have needed no transfusions other than that one week period in March 2005.

Over the past several months I have become more and more involved with seeking and trusting God for my healing. I deeply believe that there is a healing power supply that few of us tap into. We pray for each other and ourselves like we are tossing pennies into a wishing well. We struggle to believe that we are doing is anything more than saying “I’m sorry”.

After we pray for someone, he or she dies anyway and we become skeptical wondering whether these prayers are going anywhere or doing anything. Often we give up even while we are still talking the talk.

And yet, there are some who have clearly demonstrated that God and Christ still heal, that the age of miracles has not ended. While the cynics and skeptics will snicker and smirk, if one looks closely through interviews and hospital records, a clear pattern of “unexplained” phenomena far beyond the statistical chances for spontaneous remissions etc. emerges.

And that’s been my focus. Two books that make a lot of sense to me are “Healing” by Francis MacNutt of Jacksonville Florida who is a Roman Catholic priest, and “God Still Heals” by James Garlow PhD, a Wesleyan pastor in San Diego. I believe that both of these books are balanced and well worth reading if the topic interests you. Neither suggests throwing away doctors, medications, nutrition etc.

My life today is both fulfilling and satisfying. I’ve been blessed well beyond what I deserve. I am facing tomorrow with eagerness and optimism. My friends and I are praying expectantly for twenty more years. I’m still doing the nutritional/alternative stuff, but with due credit to the Great Healer.

I wish you all the absolute best.

John

[John in GR]

May God’s love give you peace beyond your understanding.
John

[John in GR]

Good stuff, Jimbob,

Keep it up. I remember your leukemic event that left you no choice but to opt for the sct. I am very happy it has worked out for you.

John

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