Stanford CFS clinic

can anyone tell me what to expect at Stanford? I have my new-patient appointment next month. Any direction or advice is welcome. Thank you!

 

I'm not sure but I think @weyland has been there. If not maybe he knows someone.

 

Thank you!

 

I'll try to think of anyone else. I'm drawing a blank right now.

 

Hi @Julie S.
I sent you a PM.

 

Thank you, Cort! I'll be seeing on of Dr Montoya's PA's as he is not accepting new patients.

 

Hi @Ron - I'm new here and can't seem to find your pm anywhere...

 

Hi Julie,
Click on your inbox in the upper right hand corner. I'll try sending it again.

 

As they probably already told you, they want a typed up illness summary from you before your appointment. I was pleasantly surprised that the PA had actually read my summary before the appointment and it sort of cut down on having to give so much verbal history, so the more detail you can put into that the better. I was seen by the PA Amity Hall. She was friendly and listened well. She did a physical exam which is always a good sign.

As you're no doubt aware Stanford believes that chronic infections have a lot to do with the etiology of CFS, so they will want to do a bunch of serology and other blood work on you after the appointment. The nice part is that there is a blood drawing station right on the ground floor of the building that the CFS clinic is in so you don't have to worry about getting around on the campus.

As a patient of two different Stanford clinics I can say that they are great while you are there, everyone is friendly and everything works pretty efficiently, but they are pretty horrible with follow up. The minute you walk out the door the ball is in your court and you will have to constantly be bugging them about lab results and followup appointments etc.

If you have any specific questions ask away.

 

@Ron @Julie S.

I see Montoya's PA, Katie. I think it's pretty standard for them to run viral labs and then schedule a follow-up phone chat to discuss the results. I started LDN right away, and then after receiving my results, I was instructed to start my antiviral about 6 weeks after reaching the full dose (4.5 mg) of LDN.

 

Thank you @Rachel. Are you feeling any better with the medication protocol?

 

@Julie S.

I am...but I have such a long way to go. I was having some heavy duty issues with cognition. The LDN has definitely taken the edge off and continues to slowly inch me along towards improvement. I have nothing negative to say about LDN, that's for sure!!

I have recently started working with Dr. Neil Nathan as well -- at the suggestion of Dr. Naviaux. I'm excited to see what he uncovers -- his approach is to find the individual precipitating factor in CFS, and in my case he suspects mold toxicity, Bartonella, or heavy metals. It will take several weeks to get test results back...

 

Julie, Congratulations on getting an appointment! I see Amity, one of Dr. Montoya's PAs. She had already read all my info before our meeting, then asked me to tell her my story so she could ask questions as we went. She listened carefully and was very compassionate. She also gave me hope. I have been taking 4 mg LDN (low dose Naltrexone) and it has definitely helped with the intensity and frequency of pain, so hooray for that. Not eliminated, but certainly reduced. I am now on an anti-viral as, as others have noted, their focus is on infectious disease. The anti-viral has exacerbated my symptoms, which is supposed to be a positive sign - the viral proteins ar dying off and getting out, so you feel worse for a while, then you get to up your dose and feel worse again for a bit. I have been sleeping like crazy; making up for lost sleep. Sleep is fabulous.
You do have to stay on top of communications post visit. Be sure to make a follow-up appointment before you leave! If you can get your PA's email, do; I have never had a response through their MyHealth or whatever their thing is for online communication. Yes, they will want you to have blood work - onsite, easy, the phlebotomist I got was a crack-up so I left laughing.
After your appointment, if you have the time, energy and $, I highly recommend the Burmese restaurant there. Oh, my goodness, so delicious.
I wish you all the very best. May they be able to help you heal. Let us know how it goes.