If only the original forms were the only ones I had to worry about. The paperwork I have to complete every eight weeks is enough to make me quit the trial before I am even accepted. Pages and pages of functionality questions, and psych. eval. questions.
I think my ‘favorite’ question was “do the thoughts of others bother you?” Are you serious? Why can’t my doctor just vouch for me that I am not some raving lunatic?
Anyway, I promised myself that I would write more about the actual process of the Ampligen intake as an informational source for anyone who might read this.
The appointment lasted over 2 hours. There was extensive questioning about my entire medical history (even though this ME/CFS doctor has known me for 6 years) . There were pages of questions. About half asked me to score ADLs (Activities of Daily Living) the other half were psychological in nature. I will have to repeat these every eight weeks.
There was a full physical exam and full neurological exam.
There was a blood draw, a urine test, a chest x-ray and an EKG.
I was so tired when I got home. I hope Ampligen is a miracle drug or the process of getting it is going to literally kill me.
My next step is a second intake appointment in two weeks. Another blood panel and who knows what else awaits me.
2 comments
Comments feed for this article
May 5, 2011 at 9:51 am
Lilly
Hi Sophie,
Here’s wishing you great success with Ampligen. Which location are you going to?
Have you been tested for retroviruses and/or viruses?
May 13, 2011 at 9:59 am
sophiechurch
Hi Lilly,
Sorry it took me so long to get back to you! Thanks for you good wishes. I am keeping my location to myself so I can blog without censoring. I am in the process of bing tested for XMRV and lots of other things thanks to Hemispherx. However, the test results will not sway my decision to take Ampligen. I made the decision to take Ampligen based on personal feelings and not blood work. I am hopeful that Ampligen will be approved so that any CFS/ME patient who wants to try it will be able to afford to do so. For me it is the biggest financial gamble my family has ever or will ever take. Sophie