I have my upcoming appt. on Nov. 18 with a supossedly LLMD dr.
I have heard some great things about him.
Does anyone have any tips or advice on how I can make the most of my appt.?
The dizziness & brain fog has been gone for a while now.
And I thought I was turning that corner but this morning I have shortness of breath & joint/muscle pain. Pain isn't too bad though.
I made a symptom list and was astounded to realize I have about 40!
Some I've had for years and they all come and go. And some are new.
My most newest one is this weird tingly sensation on my face.
And I've actuall had that "left right, right left" thing I read about. Couldn't believe it!
That's a more recent symptom.
I don't want to sound like I am crazy and I do fear he won't be what I am hoping him to be like.
I've left many dr. appt's with no answers and I really hope It doesn't happen this time because I feel this is my one and only chance for now anyway.
And I realized that the way I've been feeling all these years is not normal.
I actually thought this is how your supossed to feel! That it's normal! How sad is that?
I thought everyone had fatigue to some point.
But I do believe I was re-infected this spring/summer because something serious happened when I got hit suddenly with many symptoms all at once!
Just can't believe I didn't see that tick this time. Last known bite was 3 years ago.
And when I think about all the times I was exposed to ticks and there were many ticks!
And now I hear about mosquitos carrying it! That's a whole other story!
Here is my list: Sore bicepts (underneath arm) Frequent "throwing my back out" this past summer Horrible nightmares headaches brief period of swollen knees (this past August only) Knee pain Migratory joint pain Muscle pain intolerance to alchohol (this past summer only) chest pain (started this spring & is slightly better) heart palpatations leg muscle weakness (more this time around but for years noticed it around my menstrual cycle) hand muscle weakness (for years - drop things constantly) dizziness (just this time around, gone now) brain fog (had for years off/on) hoaresness (maybe from yelling at my kids or at their sports games?) but it would last for weeks! right left left right left right noise sensitivity (this time around) slight bells palsy (a recent visit to Rheumatologist pointed this out) tingling shoulders muscle twitches muscle tightness balance problems (always had but now a little worse, comes & goes) afternoon severe sleepiness fatigue neck pain & stiffness (a little better now) problems speaking (like tongue tied) tingly weird prickly sensations on face hot spots on skin shooting & stabbing pains memory problems - can't recall words, can't remember things, loose thoughts after a minute of getting them in my brain rib soreness (had 2 episodes of this, 1 with the most recent infection) delayed muscle soreness reaction to activity cognitive impairment (get lost) crackling noise in right ear buzzing sensations in foot
I want dr. to know all these things but this list is sooo long and I'm afraid he will think I am nuts.
Should I bring this list & make sure he knows everything or don't mention everything?
Some of these symptoms I've had going back 12 years ago and they would go away for 3 or 4 years then come back again.
I remember making a list like this back then and having dr's dismiss it because my Elisa was negative (before they came out with WB).
And I could function so I would just wait out each symptom and pretend like it was normal but this time it's severe.
Thanks for your tips & advice and so sorry this is so long.
Just not sure how to go about my appt. so I can make the best out of it without sounding crazy.
Posted by Keebler (Member # 12673) on :
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about: ----------
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
- at link. -
Posted by Keebler (Member # 12673) on :
- I would read over these, too, not just so much for Rx as your LLMD would have that all figured out but I'd focus on the self-care guidelines - and some of the key support supplements - so you can get into a routine with your diet, etc. and understand more about what is happening to your body and how you can best support the healing process.
These sources will also help you prepare questions for the LLMD about which supplements would be best for you. ----------------------------
This book is based on interviews with 13 Lyme-Literate Health Care Practitioners. Each practitioner is given one chapter in which to share their healing strategies
===============================
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.
The last pages are symptom list organized by systems for you.
Then all you have to do it check them, and notes if you want & bring the pages.
If it is a true llmd, won't be supprised at the symptoms.
Posted by Keebler (Member # 12673) on :
- You may also call the LLMD whom you will be seeing and ask for them to send you the paperwork to complete now at home. They may have a symptom check list for you.
You can print out any other lists of symptoms or questions you like and attach it to the paper work for the LLMD's file, then. Copy a set for yourself. You can use your own set of notes as reference during the appointment.
I used to have to type out all my questions in advance as by the time I got to a doctor's office, I was either too tired or too overwhelmed by all the sensory challenges to even think. I could hand my questions to the doctor and lie down and rest while he read my notes.
Try to be concise. Certain terms cover a lot: Brain fog is very descriptive, of example.
Also, look over these inner/middle ear symptoms. If you have any of those (as is very common with lyme & other tick-borne infections) you might want to copy, print and check off any that are relevant: -------------------