LLMD Friday, anxious and not sure what to expect

I have my initial 2 hour LLMD appointment Friday.

Present: IGG 66, IGG 41, IGM 41, IGM 23, Lyme IGM interp Positive
Lyme ab quant = .84
Lyme ab quant igg <91

according to my PCP and Rheum, my results are false positive and mean nothing. i have had symptoms for 4 years, thought it was possibly MS. i have a neuro appt aug 16th also.

anyhow, i always get a little anxious before an appointment. mainly because each dr seems to be a huge waste of time and money and i just end up frustrated and upset because they either dont believe my symptoms or make me feel crazy. the appointment will cost me $500, so i want to make sure i get the most out of it. I have been sick for 4 years, but my test results dont totally support it.

what will they do? will they run more tests? start treatment? do we just talk for 2 hours ;) i just am not sure what im going into. i have jounaled a little about my LONG LIST of symptoms. currently the brain fog is so severe that i have had trouble with name and facial recognition. I am ready for help.

thank you all for always helping out!

A lot of that depends on the LLMD, and you'd have to enable your email and kind of let us know with initials ONLY who it is in what State.

If it's a real Lyme literate doc I really don't believe they're going to tell you that you have false positives (because they aren't) or that they will make you feel crazy in any way.

Some LLMD's do muscle testing, since you've already been tested I doubt there is going to be a need for more antigen tests. I've never been to one, but chances are they're going to question you on your medical history a bit, etc. And it's possible they will recommend some sort of treatment course and make sure you get started on something ASAP.

You realize you probably could get that info over the phone from the Staff.

Please take a list of your symptoms with you, ones you have had and ones you are having right now.
We tend to forget these things until the appointment is over and then it all comes back a little late for the consult.

Are you going to be able to take someone with you? It would be a help in trying to remember everything that transpired during those 2 hours if there were two of you.

Good luck and I hope and pray you have an LLMD that you can work well with!

it is JF in Durham, NC. i have called the office a few times, but man they are so hard to get ahold of. she is a true LLMD and she also has lyme herself. i have heard pretty good things, but then yesterday heard that her treatments are intense and arent the best for "complex cases". not sure what that really means.

i feel like i have 100 symptoms, but i will definitely write it down. great idea. my boyfriend is going with me...but everything lately makes me have intrusive and weird anxious thoughts and i keep thinking "ill just go alone". basically that "no one cares" feeling...although i know he does and hes so supportive. its my own brain.

I dont' know what it is about this tick borne organisms that try to get us to isolate ourselves any which way they can.

Hey, if he's been with you thus far, he cares! Agree with PK on the asking questions. Try to get the most for your buck!

(((hugs))) lpaiges.

We understand sweetie and you will get through it. We are here for you!

Sounds a lot like Lyme- personality/social changes, brain fog, mixing up words, etc. I think I shed tears at every doctor I've been to in the last 2 years.
I think you will be very relieved to have a doctor listen to you. If your appointment is 2 hours, that's a good sign- they want to know everything. Be hopeful, not anxious! (In theory, in reality I know we have no control over our emotions!)
Like others mentioned, take notes and lists with you. Make a calendar if you have to, or list dates when things started happening. Check the Dr's website for registration forms or questionnaires and make sure you fill them out ahead of time. Take those, along with all previous test results, and your own diary of symptoms, with you. Find one of those Lyme symptom checklists (I believe in the new to Lyme thread somewhere) and fill it out.
As your appointment approaches start writing down (or make a note on your phone- I have many lists on my phone!) all the things you want to remember to tell or ask the Dr.
And yes, absolutely write down the instructions and ASK very specifically when and how to take your meds- what med, what dose? What time of the day? With or without food? Should I take it apart from any other meds? How long? Will I start and stop again? And any time a new med is added, verify that you're supposed to continue or stop others.
No matter what you think you will remember, Lyme brain will confuse you. Write it all down! And read the inserts that come with any Rx's you take. They can be helpful with contraindications, and side effects.

From here on out, journal your symptoms and progress daily. It will help you recognize patterns as you start new protocols, help the doc see what's going on, and in the long run, help you remember that you ARE making progress. It can go so slow sometimes, or you hit a plateau, and seeing on paper that it IS getting better is very important!