In one word: Wonderful
A Bit of Background on my Illness:
I have had M.E. since August of 2011. It started out mild-to-moderate and stayed that way for nearly three years. I was able to make it through several years of full time graduate school while working part time as a research assistant--but this nearly killed me. I had no energy for a social life and spent all my free time sleeping.
In January of 2014, I had to stop full time grad school and go only part time. I also had to cut my research assistant hours in half. By May of 2014, I began going downhill quickly. In June of 2014, I became non-functional, developed severe orthostatic intolerance, and have been bedridden ever since.
Dr. Kaufman had me write and provide a chronological health history as well as provide labs prior to my appointment. I emailed all this info to his office a week before my appointment.
The Start of the Appointment:
When I arrived, he had clearly gone through my entire file prior to my arrival. He had me tell him my health history verbally, because, in his words, "people frequently have more to add. Plus, I can ask questions during the telling."
He was very warm and personable! He also really understood how ill I am. When I had to recline after the first 10 minutes of the appointment, Dr. Kaufman didn't flinch. He said at one point, "You are very, very sick." This felt like a miracle in comparison to the years of disbelief by SO MANY doctors who insisted I was "a perfectly healthy young man."
Pulse, Blood Pressure, ACTH Stimulation, and Blood Draw
Dr. Kaufman took my pulse and blood pressure while sitting, standing, and lying down. He told me that I have "extremely severe POTS." He said the POTS is contributing to my fatigue and is making it impossible for me to sit or stand for any length of time. He also said that treating the POTS alone will result in significant improvement but is not the whole story.
He then discussed my elevated viral titers from prior lab work. He said he still needed to test me for NK cell function as well as do some more viral titer investigation. So, his nurse drew VAST AMOUNTS of blood. I'm talking, 4 HUGE syringes of blood--these syringes held the volume of a large turkey baster.
Then he injected me with ACTH to stimulate my adrenal glands and test their functioning. I was shocked to find that this injection made me feel significantly better. Not "cured" by any stretch, but much better!
By the end of the appointment, after so much blood had been drawn, his nurse infused me with 2 liters of IV saline. This was a relief.
Next Steps:
Throughout the entire appointment, Dr. Kaufman was VERY open to questions and answered all of them. He was patient, knowledgeable, and kind. By the end of the appointment, he wrote me prescriptions for Propranolol (beta blocker) and Florinef (increases blood volume and replaces aldosterone). These will treat the POTS while we wait for the results of my bloodwork.
He said the next step will very likely be antiviral treatment with Valcyte, which we will discuss at my followup appointment. I scheduled this for September 4th.
In a Nutshell:
If anyone lives in or near California, consider going to Dr. Kaufman if your health and finances will allow it. He's located in Mountain View, which is in Northern California (near San Jose). I only had a three week wait from the time I called his office to the time they scheduled me in for an appointment.
I have hope now and feel like living again. I couldn't be happier.
