Flayvor said...
I have a lengthy previous post on here filled with typos and horrible grammar if anyone wants to read through it. It has most of the info about what im going through and my story, albeit its not complete and some of it may be redundant. I'm still learning how to dose my new anxiety meds and I'm not sure i really even remember writing it all out to be honest.
Anyway, Dr. J in DC. What can i expect. Is there anyone I should avoid, i want to say im seeing a pa named Rachael.
I have searched his name on Reddit and it isn't all positive info, however most every where else i look it seems to be praise and positive reviews. I know no one is perfect and not everyone responds the same way.
I got the bullseye in 2008, but I have only had neuro symptoms since March of 2019. Is it possible I'm overreacting by going all the way to DC. Also there such a thing as catching neruo lyme early? Or at this point is it already to late for me to hope to get back to normal.
I hear the staff is really hard to deal with and get ahold of, do you guys have doctors that you work with alongside Dr J, so you aren't constantly waiting for return calls and such?
Ill keep it short till I get some response, I really have a million and one questions, but maybe that's just the bartonella slowly driving me mad.
I have heard from a few forum members that Rachel is really good. They had a couple that weren't so great, but they've since left.
I've also heard that AW is good too.
And of course Dr. J himself is fantastic.
Are you over-reacting to go that far right away? NO, NO, NO . My only regrets is I didn't go sooner...I think I would have been further along sooner.
So when I first went to the clinic in Feb, 2018, the support staff weren't so great. If you called the triage line - although I had good service, some people on the forum reported that it would be 2-3 days before a return call.
If I call with a question on Monday. I usually hear back by Tuesday morning or early afternoon.
They do not charge for simple questions and answers....but if they think it's too much they will suggest you make an appointment.
I have had all my concerns handled with the triage nurse.
One time I called because I had some lesions show up after starting a new antibiotic....they called me back the next day, confirming I could stop it and replace it with another one.
There are clinics that would have charged for that.
Another time I called because I was feeling like I needed to change my protocol...thought I was slipping on the off-weeks and I asked if I could change the pulsing to 2 weeks on to 2 weeks off instead of just 1 week on.
They called back the next day and told me it was okay...and asked me to add something else in.
I did have some trouble at first when I wanted to switch to Dr. J himself...but after perseverance, I got my wish...and he is now my Dr.
My regular Dr. here at home is wonderful. I still go to her for all non-lyme related stuff. But, I don't talk too much about
lyme...as she isn't educated...but she is tremendously supportive...
Plus she writes a lab req for my monthly 'safety labs'.
I don't know how it works in the States...There is a Quest lab upstairs at the J Clinic building.
And he writes out a list of labs you need to have done. There is a TON of them after the first appt.
Do you have a Quest Lab near you? If not, you can get them done when you're in DC.
The safety labs - do you have an understanding Dr. back home that will be willing to write you a lab req?
It's a CBC, liver and kidney tests....etc.
They need to be done once a month...and usually after Week 1 of your protocol.