Luctor et Emergo

Time has flown by and yet it stood still. Nothing earth shattering happened since I last so optimistic a new chapter announced. We, my doc and me, we hit a wall with regards to my treatment. Over the years nothing that we did made a difference, in fact I became much more bed bound, ill and in pain 24/7. Nothing that he brought up helped me, things that worked miracles with his other patients did nothing at all. Very disappointing for me as well for him.

I suddenly realize that it's not quite true, I do have something that does work, something that I asked for myself and deeply believed in, something that I stubbornly keep taking. Nexavir.

I will write a separate blog entry about Nexavir and how it makes a difference this week.

We agreed I needed to see a specialist, a ME expert. And we talked about Ampligen since Nexavir worked so well for me. I contacted Hemispherx and they talked things over with me and gave me instructions on who to contact. Unfortunately their contacts were a bit out of date, half of the physicians listed stopped participating in the project.

Dr. Klimas stopped administering Ampligen all together, dr. Bates stopped accepting Ampligen patients, dr. Patel stopped participating and dr. Peterson does not accept patients just for Ampligen. Your choice will be to transfer your care to dr. P. and after the usual tests he will decide what treatment you will get and that may or may not include Ampligen.
I requested my medical history, filled out files and send them all plus a check to his office.
I called and called and called and finally spoke with a male nurse I think, he answered my questions about the waiting time and the criteria dr. P would decide if you was accepted as a patient or not.
The waiting time was a variable, it could range from 6 weeks to 6 months or a year depending on what and who dr.P decided to see. On the question what his criteria was for accepting patient the answer was that he didn't know, it seemed random he said. As far as he knew there was no criteria.
He could not give me an estimate on how long my waiting time would be, I guessed it all depended on how interesting your case would be. One thing he did tell me that it was not first come first serve based. People who would submit their papers after me could easily get in right away while I would have to wait.

That did not sound good but what could I do? Nothing but wait.
I waited and waited and waited and wrote emails requesting at least an acknowledgement that they had received my files and that everything was in order. Radio silence. I called and called and left messages and never received a call back or an email reply. After 6 months the stress started to take it's toll on me and I was discussing with W. the fact of moving to NC to see dr. Lapp who already told me in an email he would be more than happy to accept me as an Ampligen patient. That is the way I thought it was suppose to be. The distance was a factor, the fact that we had to drive the RV to Charlotte in almost winter time was not something we were looking forward to.
There also was dr. Enlander in NYC who would love to have me as a patient but in NYC are hardly any places for an RV, not for long term. W. need decent WiFi to be able to work from home, all factors that play a role. Plus NY in the winter is bad as we now see.

When WPI announced in October that Professor dr. de Meirleir had accepted the position as medical director and would begin seeing and treating patients in that gorgeous empty building, I jumped at the chance and contacted his office to make an appointment. The fact that we speak the same language helped. The same day I received a reply that the Professor(that's what they call him) was going to be in Reno the weekend of November 9th and would I be available for an appointment that day? Would I? Heck yes! I could not believe my luck! For once I had luck! A doctor and expert that wanted to see me!

We began to make preparations, W. rebuild the truck, he removed the back seat to make a bed for me so I could travel horizontal. We figured it would take us 2 days to drive from Oregon to Reno, no snow was expected on the passes yet. We decided to rent a long stay hotel room for a week instead of an gambling hotel. We traveled the weekend before my appointment so I could rest and recover before I had to see him and would drive back right after my appointment.
After all W. had a job and could not take too many days off for driving.
We did run into a snow storm on our way up and panicked for a bit, we had no cell phone coverage up the mountain and no GPS coverage either. But we were lucky, a snow plow found us and told us to drive right behind them and we arrived safely over the pass.


The hotel was fine, quiet, beds were good and I rested as much as I could.
I had 6 days until my appointment.

Stay tuned for the next chapter of my report of the appointment with one of the world most famous ME/Tick Borne Infections expert.

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