Wednesday Night

I just had to look at my calendar to see what day of the week it is...way too immersed now.  The three of us met with Dr. R for over an hour this evening.  Both Jeff and I agreed that this woman is so experienced that we would never dare stray from her formulas.  Honestly, I had visions of myself coming here being far more researched than most of her patients, you know maybe slightly disagreeing and suggesting other things that might even impress her...fat chance.  I just sit quietly and write as fast as I can.

She has about 1500 patients - 90 % of whom are outpatient.  It's the 30-40 of us who relocate and stay for extended periods who are the most "serious and severe," in her words.  It was enlightening to watch her watch Coleman.  There was a thunderstorm outside (lots of them here) so he was holding his ear muffs and screaming with every roll of thunder (like he's doing as we speak tonight).  She told us to look at his eyes and that he was actually having seizures when he does this.  Bartonella is the culprit that causes the mental disturbances.  She noted his talking in first person and how that represents a disconnect from himself both physically and mentally.

I will go out on a limb and say that she is expecting Rocky Mountain Spotted Fever but please note - this has NOT been diagnosed - just her gut today - waiting on labs to confirm.  She explained that RMSF and Bartonella are the most deadly and to have a combination is lethal - not to mention the mold and PANDAS.  Beta strep is a big part of her equation.  She gave a great explanation of biofilms and how they form around the red blood cells and basically trap everything in.  They cause blood coagulation issues and basically nothing can move in or out.  That's why some people who have had literal years of treatment with antibiotics for Lyme are still sick.  The biofilms were never broken down, so the meds could not get in and do their job.

There are so many things she will be treating him with.  We start with antihistamines, drinks for dehydration, probiotics, minerals, heavy C - these are all things they mix and he'll take them in his PICC line each morning before the AM 2 hour drug drip.  We will start with the famous doxycycline and see how he detoxes.  7:00 AM each and every morning and 4:00 PM each evening - about 6 hours at the clinic each day.  Because of his hyper sensitive hearing and anxiety issues, she has arranged a private room for him each day for his IVs.  She has two other girls like this who sit in a private room.  Hopefully Coleman can eventually find some friends at the clinic.

After Jeff and Coleman left the clinic this evening, I stayed for another hour to get so much info that I don't even know how to condense it tonight.  While that was happening, Coleman hit another milestone.  He and Jeff went to Gamestop.  This is the first store he has been in since December, I think.  Picture this guy holding his stuffed animals, wearing gun muffs walking bare foot in this store.  Sure, there are lots of stares, but generally nice people.  Jeff asked the man to cut off the music and Coleman stood and picked out a game.  He couldn't wait to tell me and it made me so happy.  We then went to a 7-11 and he went in for a slurpee - lots of yelling from the noise but Jeff and I just keep moving like we don't hear it...we probably don't.

I am convinced we will find Coleman while we're here - I am becoming convinced it will take some extra time and patience.  Dr. R has such a tried and true system but she says we'll be testing and retesting and moving slowly so as not to have a crisis in healing.

There is so much more I want to say, but am spent.  Tomorrow we head to another hospital for the insertion of the PICC line and an abdominal scan - hopefully this scan will be possible since it's much less involved than the brain scan (which we'll be doing next week and he'll be under full sedation).  From the hospital tomorrow, we'll go to the clinic for his first drip.  Off to the races.

Tonight when I left, it felt late and I said to the doctor, "Do you know what makes me happier than anything?"

"What?" she asked.

"That I'm no longer in charge."  She smiled at me with full eye contact.

"Now you've got some reinforcements."

We walked out of the office, I thought she was turning her lights off for the night and she turned them back up (had to be down for Coleman's eyes).  I asked if she was going home.  She turned around and said she had three more patients to see.  It was 8:45 PM.  She said there were lots more sick people to make well.

Such a load has been lifted today.