Saturday, March 19, 2011

My Sweet Kids

Well, I have finally made it home to Fayetteville!  My hubby and kids were here to welcome me with lots of hugs and kisses.  :-)

Last night, I was telling the boys good night on the phone and Adam finally asked, "Mama, where are you?".  I think it was the first time he actually realized I was gone!  They had such a good time in Montana, no one knew Mama was gone....he he he   I am pretty sneaky!

Anyway, when we drive up in my Dad's car (who they call Gaga) they got so excited....sadly, not because I was in it.  My kids are literally obsessed with my dad's car.  They LOVE that it has a "movie" in it (our car does too, but they just don't get to watch it very often).  Gaga has VERY different rules and they get to watch movies to their hearts content when they are in his car.  So I think that they think that I opted out of skiing in Montana to ride around with Gaga and watch movies for the week.  They kept asking me what movies I watched.  Kinda cute. 

Well, I didn't get any infusions today, but will go to Hot Springs tomorrow to start my last 6 days of infusions.  That means I have 12 infusions left for the loading period.  I am feeling not as good today as yesterday, but expect to have good and bad days here at the beginning.  To have a few good days littered in would be an improvement from where I have been.  Then, maybe there will be a few more good days, a few more and a few more....

The response time varies from patient to patient.  From the patients I spoke to with RA it seems to be anywhere from the first day to 3 months.  One lady I met had a response the very FIRST infusion.  The other patient from Hot Springs had a response at 3 months or so.  It seems to be dependent on how much crap (excuse me...toxins) you have in your body when you arrive.  The lady who had a response the first infusion had stopped EVERYTHING 3 years before ALA and had decided to just live in pain.  Her hands were frozen closed and she was shuffling around and looking into a wheelchair.  Since she had no toxins in her system, she seemed to response very quickly.   She now walks fine (and dances), and has full use of BOTH of her hands.  She receives treatment every 2 months or so.  She is 73 and looks better than ME!

The other patient from HS, had just completed chemotherapy from a lymphoma she received from taking Enbrel...ironically the treatment for her lymphoma was Rituxan (the drug that I was to be on before I started ALA).  After she received Rituxan for her lymphoma...she headed to Dr. Berkson and ALA/LDN.  It took 3-4 months for her to see a response due to the Rituxan and Enbrel working their way out!  She is now a new woman with very few limitations physically.  She has amazing energy and no inflammation to speak of. 

These responses are exciting and encouraging to me!


  1. Thank you for keeping us updated! Praying for you friend!

  2. Enbrel is the human receptor for TNF. It is in the body for about a week and is metabolized like any antibody in the body. Rheumatoid arthritis and Sjogren's syndrome are highly associated with the development of a B cell lymphoma, especially in people with long standing active disease. The Danish databank shows that there is no association of lymphoma with the use of anti-TNF agents, as the incidence of lymphoma is similar with patients receiving anti-TNF agents and those not receiving those agents. This is the largest more complete patient registry.
    I am hopeful you have a good response to your treatment, as it may be important for others. It is important to separate fact from fiction.

  3. My wife developed CLL from Embrel, period. Daniel, you must know there is a black box warning about this complication. She tried everything "board certified rheumatologists" threw at her, to no avail. Dr Berksen's treatment has worked. She is pain free now. So, no matter what you have to say against it, it works. I am a witness.

  4. I am that patient who the above is about. For starters, my RA was no long standing disease. At that time maybe 2-3 years. In august of 2009, the FDA made the makers of enbrel (and its cousins like remicaid) put a BLACK BOX WARNING on the product, stating the potential risk of lymphoma. I never got that memo or I would have dropped it like a hot potato. Of course, that fine print was there in the beginning, but my BOARD CERTIFIED rheumatologist poo-pooed the danger. I am on no roster or list as having developed CLL from enbrel. So there is no register out there with my name on it. I'm sure there are countless others not on any registry, just like me. I thank God for Dr. Berkson, who has fought the establishment for 40 years, because he truly wants to HELP patients!