CLL Alternatives

CLL Update August 29, 2012

Posted by: Denise on: August 29, 2012

There is a reason there are so few posts on this blog.  Initially I was positive that I could totally reverse my CLL diagnosis.  This hasn’t happened — yet.  My plan for this blog was to be an uplifting, upbeat place for people with CLL (newly diagnosed or those trucking along like me) to get a positive feeling.  To get hope and inspiration.  I have to admit I’ve been discouraged more than once since starting this blog.  But…. I’m still here, and I still have NOT had any conventional treatment — even though it has been recommended.  I’ve managed to turn the ship (to use a metaphor), but I haven’t yet been able to get the ship back to shore.  It’s been eleven years, and truthfully, I’m doing fine, and living a relatively normal life.

My last problem was with my Neutophil count, which about a year an a half ago were dangerously low.  That was when my hematologist was recommending Rituxan and Neupogen.  I didn’t want the Rituxan because I looked it up on Google, and apparently it doesn’t work well without a jumpstart from some chemo (perhaps a little bit of chemo?), so I said no thank you!  The same for the Neupogen.  Neupogen comes in a shot, which you apply yourself to your stomach regent — twice a week.  If that wasn’t bad enough, I looked that up as well.  Neupogen does increase your Neutrophil count, but it causes your body to stop making its own.  Eventually you need more and more frequent shots.  This did not sound like  a good plan to me!

So I conferred with my son, a Nutritionist, who suggested that I take several bacteria-, virus- and fungus-fighting herbs.  So I started on a heavy-duty regimen of Olive Leaf, Pau D’arco, Coconut oil, and Goldenseal.   This helped.  The next time I had a blood test, my Neutrophil marker improved.  After that, I decided to start the Ultraviolet Blood Irradiation treatments at the Wycoff Wellness Center in East Lansing, Michigan.  Prior to this time, I’d heard of it, but was frightened of the process.  They withdraw blood, add a little heparin, and then the blood is returned back into your vein, after it passes through a machine that treats your blood with ultraviolet irradiation.  I have to admit that it sounded scary, risky even.  But now that it’s been more than a year, I have to say that it most likely has been a factor in keeping my Neutrophil count closer to normal.  I get no more warnings and I’m back to being tested everything 4 months (rather than monthly).  The people there are wonderful!  It isn’t scary at all, or risky.

So while I have not yet effected a complete reversal, I can confidently say that I am stable.  I am much more consumed by caring for my ailing parents than I am in thinking about my diagnosis.  (I don’t “have” a disease, I have a diagnosis.  This is a comfortable separation in my mind.)  I’m planning another trip to Texas for another nephew’s wedding.  And perhaps I’ll change the picture in the About section.  I’m not taking the time now to illustrate this post because I am busy.  I’m well, thank you very much.  But I’m working part-time, taking care of my parents part-time, and trying to squeeze writing a book into my spare time.  Oh, and my husband and I are getting more and more into the raw food diet.  (I really have to write this thing more often.)

If you are dealing with the emotional toll of CLL and you want to write me, please do!  I always have time for that.  You are my number one priority. You can contact me through this website/blog in the comment section, or email me directly at cllalternatives@gmail.com. Think happy thoughts and be well. – Denise

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