Saturday, March 8, 2014

8. Gathering Accurate Information

Чем да́льше в лес, тем бо́льше дров.

 Literal: The further into the woods, the more firewood you'll encounter.

I thought my next post (this one) would be about the amazing people who pay it forward - those in our online groups who have gone through HSCT and come out on the other side healthy, able to walk again (after years in wheelchair, or cane), with their energy returned and their lives back on the 'LIVING FULLY' setting.  

But then I saw a post that made my heart almost stop.  One woman in a Southern USA state said that once she posted her intention to have a "Stem Cell Transplant", she lost many many FB friends, and some of her own family and home town won't talk to her.  They, in their ignorance and self-righteousness, thought that she was going to benefit from embryo stem cells, which they found both repugnant and 'Un-Godly", immoral.  

So allow me to clear up that issue here for anyone reading along who wonder about the process I'm about to go through.  It is HSCT - Autologous (from my own body) Hematopoietic (Blood) Stem Cells.

No human embryos are sacrificed in order to cure CIDP, MS or other autoimmune ailments in this process.

When you get chronically ill, you begin to dig deep - go further into the woods, in order to help yourself since the current 'treatment protocols' are all nearly as great an assault as is the CIDP, and you are a bit on your own to learn all you can, gather all the firewood you'll need to proceed with your own inner fire that leads you to a curative HSCT, even if it's in Russia.

The article in the following link is a good basic overview:

AMA Basics of Stem Cell Research

Hematopoietic Stem Cell Transplantation 

Peripheral Blood Stem Cell Transplantation

I found initially that just one location in the USA was actively doing HSCT for autoimmune disorders like CIDP, MS and others, and that was at Northwestern University, under the research of Dr. Richard Burt.  Now in the 3rd phase of a clinical trial, Dr. Burt has been performing HSCT for more than 10 years already for autoimmune affected patients, and has a few more years to go before full FDA approval is achieved. This is a sore spot with most of us because it only takes a couple years to get a new 'endless maintenance' drug approved, sometimes even less, and short shrift is given life saving cures like this that are being done already for many other patients (Cancers, Lymphoma, Leukemia, etc. etc.) throughout the USA. The study is only to gain FDA approval to use this life-saving treatment on disorders of the immune system, before they turn into cancer.  

Dr. Richard Burt, DIAD (Division of Immunotherapy and Autoimmune Diseases)

While some insurance companies are already agreeing to pay for HSCT at Chicago, Illinois with Dr. Burt (BC&BS, Aetna, United, USA Federal Empoloyees Ins, Medicare to name a few) my own Kaiser-Permanente is not. They will wait until I get cancer or until the FDA final approval is in place, even though it's agreed this procedure is saving MS and CIDP (etc.) patients' lives and futures.  So for me to go to Dr. Burt in Chicago, the quote is more like $155,000 plus apartment/hotel and travel expenses.  Plus the study is tightly defined and so it's possible I, like many others, would be turned away owing to the results of a capricious EGG test result or to age. One out of the stage 3 testing, and fully approved, I might be too old to get HSCT.  


I've gone deep into the woods!


  1. I'm a new follower of your blog Susan, and alot more than just "curious"!! I don't claim to understand ANY of this technical stuff but I am thinking about you and praying for your complete recovery and getting out of those blasted woods!!!

  2. Susan, good for you for explaining that HSCT is only involving good cells From Your Own Body. It is sad that people jump to conclusions and do not ask questions to clarify any mis-understandings. Praying that all goes well for you in this great adventure! M. G.

  3. Thank you, MG. There is so much misinformation out there!