Luctor et Emergo

This is me in the image above. It's a Dutch saying; swimming against the tide.

On Saturday Nov. 9th I met Professor dr. de Meirleir, I already knew him from all his videos. After a clinical exam he diagnosed me with late stage Bartonella, Babesia and Borreliosis. Apparently I have a mask on my face and a typical rash on my abdomen with large red and white stripes that are typical for these infections. To say I was shocked is an understatement. I went to see him in the hope on new insight for treating my ME, never in a million years did I expect to come away with 3 new infections. Well, not really new, in fact the are old but new knowledge to me. He warned dme that oral antibiotics will not help in my case, the late stage will not react to oral abx, he said he was probably going to recommend abx infusions. He took about 1/3 of what I have in my veins to have it tested in what I assumed WPI's lab. He said we would do a phone follow up in 6 weeks after the results of the lab would be in and discuss treatment.

First sign something was not quite right was that in begin December I received a notice from my credit card for an alleged fraud attempt of over $5000. And did I know the marketing company Red Labs from Europe. No, I did not but the name sounded vaguely familiar. After a search online I found out is was dr. de Meirleir's lab in Belgium. He had taken my blood samples to Belgium to have it tested there without notifying me of such and presented me with a bill of $5000. Not that I had received an invoice, no, they just attempted to charge my credit card which I had given to pay dr. de Meirleir for the consult. I expected to receive an invoice from an American lab(WPI) so I could submit it to my insurance.
No way in hell is my insurance going to pay for a blood test from a foreign lab that could have been done here for a fraction of the price. I waited, I knew they would contact me because the charge was declined and yes the next day I received an invoice with a request to pay. I protested the fact that I was unaware that my blood was tested in Belgium plus I wanted them to remove the 25% Belgium tax that they added. As American citizens we do not have to pay European taxes. But no dice. They said if I didn't pay they would not release the results. So we paid. Too much stress to argue. We will file a form at the US tax office to get that tax back.
I was not a happy puppy.

After the 6 weeks were up I emailed and asked for a phone appointment. I got one. At 5:00 am. Not doable for me. My brain doesn't work at that time and I would not be able to ask questions let alone remember what he said. They forgot I was 9 hours behind them. I suggested 11:00 pm, midnight or even 1:00am Which would be 8, 9 or 10 in the morning their time. No, could not be done, that was prime time when they would see patients. WTF? Am I not a patient? No, because it was so problematic(?????), the phone consult was even off the table. I would now receive a written document with his interpretation of my test results and a treatment proposal. No opportunity to ask questions. Period. That was December. It's now end January and I'm still waiting.
I email every few days and I have read that he usually writes reports during the weekends so I could expect it on Monday, I waited till Wednesday and emailed again. Radio silence. Than this Monday I received an email that no they had not received my files yet and the Professor was out of town and was expected back next Monday. Meaning he will not be able to write that report coming weekend either so it will probably be the weekend after that or who knows maybe later. That will be about 3 months after I saw him, 14 weeks, 8 weeks later than the original phone consult was promised.

I'm depressed, grieving and livid at the same time. He said he thought I was very ill. One would erroneously think that if one is so seriously ill a treatment would be started quickly so the patient doesn't have to suffer any longer or even might get worse if we wait longer. Nothing can be further from the truth in my case.
It is and feels to me like they don't care anymore. I saw it in dr.P practice and now dr. de Meirleir, I feels like I am too old and too sick to book a success, to be worth it to bend over backwards for to get me the treatment I so long have waited for. I'm a mess, a too complicated case with a million of infections, viral and bacterial. It feels like they have lost hope for me. If that is their attitude then there must be some truth in it right? Maybe I am too ill to improve and is it just a matter of time. Who knows? They might be right.

I still think he is an excellent physician, and I know all he wants it get people well. What is going wrong in my case I have no clue. It's not that he is not used with dealing with seeing people in other countries, after all he travels to Norway to see patients there. Maybe it is the time difference that is playing a role. I can only hope that the patients he is planning to see this month or next in WPI will have a better experience than I have. And I hope he informs them that their blood will be tested in Red Labs, at a price.

Stay tuned for the next episode in where I will tell you how a flea product will help me get rid of my Systemic Yeast Infection.

# # #

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.

# # #