[cthomas555]

Yes, I do. If Chem ask, will give her the specifics by PM.

[cthomas555]

I had a hip replacement in 2003 with no problems.

Chris

[cthomas555]

It seems to me that the persons most yelling foul for me questioning the safety and efficacy of alternative medicines that are based purely on anecdotal reports, are the same persons who have consistently openly condemned conventional medicine on this forum. What hypocrisy!

[cthomas555]

In John’s own words but contrary to other reports John did begin discontinuing the Prednisone and began Dr. Kou’s medications after his June visit.

John continued to write in My visit with Dr. Kou:

“He mixed up a formula that I take 3-4 times per day and I’m taking some pills. I am no longer shooting up cortisone and am tapering the prednisone (Dr. Kou understood that prednisone should be tapered and not stopped cold turkey). I stopped the Dapsone.”

John did taper off the prednisone and took the formula and pills treatment that Dr. Kou prescribed for him. It’s a given that this was John’s choice and no one is criticizing him for making that choice considering the proposal that Dr. Kou made to anticipate a cure of the MDS in 1-2 years.

Patti is your M-I-L cured yet? Has it been 2 years since she began her treatment with Dr. Kou before you referred John? I wish her success and I pray for us all.

Chris

[cthomas555]

John wrote:

“He [Dr. Kou] was not surprisingly not familiar with the Sweets but he believes it will resolve as my underlying condition improves. He stated that he has had very good success with MDS patients, especially those who have not become leukemic.”

“Of course, I wanted to know what he meant by “very good success” or “very good prognosis”. He indicated that based on his experience for persons in my situation (no guarantees, of course), he thought it not to be unreasonable to anticipate being cured, as in no more MDS in 1-2 years.”

Any doctor who says he thought he could cure MDS in 1-2 years is suspect in my opinion. I also don’t think I would want a doctor unfamiliar with Sweets to be treating me for the disease.

My different point of view does not indicate hostility nor disrespect to John’s memory or to his family.

Maybe someone else will benefit from my opinion by being conservative when seeking out alternative medicine.

Chris

[cthomas555]

Jimbob

When John in GR saw the Chinese Doctor Kou he was taken off the Prednisone, the only known successful treatment for Sweets, and put on a chinese medicine.

I think he would have had a better chance for survival on the Prednisone.

[cthomas555]

VA Gal,

I hope this helps…

“AML is diagnosed when blood and bone marrow samples show a large number of leukemia cells. AML has eight subtypes, labeled M0 through M7. The subtypes are based on the type of blood cells affected. To find out the sub type and how well the leukemia might respond to treatment, the samples are looked at to find:

* The number of healthy blood cells.
* The size and number of leukemia cells.
* The changes that appear in the chromosomes of the leukemia cells. This is called cytogenetics.

Doctors also examine the patient to find out if leukemia cells have spread outside the blood and bone marrow. Doctors may use a chest X-ray and an ultrasound of the abdomen to look at the organs and tissues inside. They may also use a test called a lumbar puncture (spinal tap) to find out whether there are leukemia cells in the fluid around the brain and spinal cord.”

For more information go to:

http://www.marrow.org/PATIENT/Undrstnd_Disease_Treat/Lrn_about_Disease/AML/index.html

[cthomas555]

SusanJ,

How is your father? I remember running a slight fever after receiving my first flu shot in the 1960’s. Nothing more developed from it. I have been receiving them on a regular basis since my MDS diagnosis in 1996.

Chris

[cthomas555]

Another insightful article:

Wall Street Journal – August 7, 2006

No ‘Alternative’ By JEROME GROOPMAN

http://henwood.blogspace.com/?p=3315

Chris

[cthomas555]

Heartbreaking news. Tell me it isn’t so. If anybody could make it, I would think it would be Dennis with his great attitude. Well, it ain’t over, and it is said prayers can make miracles. Let’s make a miracle.

Chris

[cthomas555]

Marlene,

Yeah, I agree that I need to work out another schedule. Thanks for the suggestion.

Chris

[cthomas555]

Peter, I would use Google to search for
“treatments for leg ulcers.” There is quite
a bit of information available on the Net,
more than can be posted here.

Let us know more about your Mum.

Maybe this link will work to Google…

http://www.google.com/search?q=treatment+for+leg+
ulcers&start=0&ie=utf-8&oe=utf-8&client=firefox-a&rls=org.
mozilla:en-US:official

Chris

[cthomas555]

Dennis, thank you for my last laugh for a while. Hurry back to the forum.

God bless.

Chris

[cthomas555]

Patti,

Novartis states in their pamphlet, “Reduction of LIC and
serum were observed with EXJADE doses of 20 to 30
mg/kg. EXJADE doses below 20 mg/kg per day failed
to provide consistent lowering of LIC and serum ferritin
levels. Therefore, starting dose of 20 mg/kg per day is
recommended.”

You can also read the details of the Novartis clinical
trials of EXJADE in this report.

http://www.pharma.us.novartis.com/product/pi/pdf/exjade.
pdf#search=%22exjade%20below%20therapeutic%20level%22

Chris

[cthomas555]

Hi, my update…

I have Rheumatoid Arthritis, and other inflammatory diseases, so my Ferritin count is unreliable to determine the level of my iron overload. One month it is 2000 and the following month, even after Exjade treatments, over 5000.

I was told by the nurse practioner and also read that as long as you receive transfusions you will require Exjade treatment. The Ferritin level may not lower too much while you are on transfusions and Exjade, but it will not go up too much more either.

I hate drinking Exjade, but considering the alternative it’s not so bad. I hate having to wait 45 min each morning until I can eat or drink. I am quite non-compliant and miss two or three mornings a week. With the diabetes, sometimes my glucose level is low and I need some sustenance upon awakening.

I take 1000mg according to my weight. The pamphlets says it will not work at lower than the prescribed therapeutic level. I’ve had no problem other than mild cramping sometimes and mild diarrhea. My ALT, BUN and Creatinine counts hold steady. My skin coloring now vary more…before and after a transfusion. I hope I can get another ferritin count on Tuesday, but it may be too late for the hem/onc secretary to order it.

Here is more information on Iron Overload for those who can use it.

Transfusional . . . Iron Overload

The clinical manifestations and pathology that may develop in patients with iron-loading anemias are similar to those seen in hereditary hemochromatosis, including liver disease, diabetes mellitus, endocrine disorders, and cardiac dysfunction.

About 200 to 250 mg of iron is added to the body iron load with each unit of transfused red cells. Most transfusion-dependent patients require 200 to 300 ml/kg of blood a year; for example, a 70 kg adult requires about two to three units of blood every 3 to 4 weeks, adding about 6 to 10 g of iron a year. The severity of iron toxicity seems to be related to the magnitude of the body iron burden. Almost all patients who have been treated with transfusion alone and have received 100 or more units of blood (about 20 to 25 g of iron) have developed cardiac iron deposits, often in association with signs of hepatic, pancreatic, and endocrine damage.

Iron chelation therapy should be started early to prevent the accumulation of toxic amounts of iron in vulnerable tissues and to maintain body iron stores at concentrations associated with a low risk of early death and clinical complications. The longer chelation therapy is delayed, the greater the risk of iron toxicity.

http://www.medscape.com/viewarticle/535021

Chris

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