Clarification

I have gotten a few messages from some of you saying something along the lines of "we hear you are not going to do the bone marrow transplant."

Let me clear.   I never said that.

However, the very first doctor that I encountered at St. Vincent's Hospital the first night I was in ER said it bluntly "You should do everything you can to avoid a bone marrow transplant."

Some of you have strong opinions on what you think I should do--in one direction or another.   While I really appreciate your concern for my well-being,  I am in a process of carefully researched exploration.  

No options have been eliminated at this time.

My reality is this:

Yesterday I had a Platelet Transfusion, which was 6 days from the previous transfusion.  The last transfusion was only 5 days apart.  This is one day progress.   Today my platelets were 51.  

My WBC went up from yesterday.

I have not had a blood transfusion for 12 days.   The last transfusion was only 7 days apart although previously they were averaging about 10 days apart.    While my hemocrit is lower than it was yesterday, I hope that I might be able to wait another 3-4 days at least for another blood transfusion.   This too shows progress.

Yesterday's blog featured Marla Brown's recommendations.   My BMW of juicers (the Green Star 5000) arrived today.    I sent Marla an email this morning asking various questions and this is what she wrote back (though she didn't answer all of my questions, I hope that she will).

Dear Karen

Very briefly, I am currently doing well and transfusion-free. While I do continue to eat as much organic foods as possible, I am not as strict as I used to be. That is, I do go out and eat at restaurants again, but still no junk foods or snacks such as sodas or processed, prepackaged foods. I did start out vegan in the beginning, but I currently don't recommend a strictly vegan diet anymore because I do believe that people with blood disorders need some animal products especially since true B12 only comes from animal sources and the body does need some saturated fats, etc. I would currently recommend avoiding sweets such as fruits in the AMs, and eat those after lunchtime as too much sugar in the AMs is stressful to the adrenal glands.


I would say that it's a rare person who would forego conventional medical treatment like I did. My first inspiration was from Roger Fortin, who has since passed away due to a heart condition. He did make a full recovery and lived well for about 5 years after he recovered. I did write a small thing about him on my website. The other person who tried to go it naturally was John Hess, but he had MDS, not AA, AND he did some things that I would not recommend such as competing in running competitions. So that would leave only one person I know of who has foregone the conventional IST, and his name is Akshay. He is a young boy whose parents oversaw his treatment. He recovered and took about the same amount of time I did. Our cases have similarities and differences, but that will take more time to discuss. I do know of a couple other people who are trying to go natural, but only after they have already taken the standard treatments which did not help them. So far they are still taking transfusions.

Take care!
Marla


Here is another letter than I received from someone who went through the ATG treatment twice:

Hi Karen, well my counts were really low too - I had less then 10 on the platelet count, and my white cells were below 0.5, reds were around 8 or 9 I think. My first round of ATG didn't seem to do much so after 4 or 5 months we tried a second round. There was eventually some improvement around a year after diagnosis but I had a year and a half of transfusions in the meantime. I've followed Bruce's story too but not sure about the alternative treatments, I did try chinese herbs for a while but gave up mostly due to the disgusting taste !

Andrew
(Still alive after treatment 10 years ago.   He got AA when he was 38).