Thursday, January 8, 2015

Sometimes You Just Find The Right Doctor

And who knew an Otorhinolaryngologist (ear, nose, and throat) doctor could help you with that. 
What I looked like. And I didn't even need twitched.
Originally, I was to go to this doctor to get a lip biopsy done to either diagnose or rule out Sjogren's disease.
And then, I was scoped (like a racehorse!) and we noticed a few alarming things. He told me that even though
 my MRI results said they were ok, they were not. My sinus area was no good. Through the scope, I got to see
my whole nasal cavity structure (weird) and my voice box (even weirder). Apparently my septum is all sorts 
of crooked, my turbinates are extra large and there was some other structure that was no good as well. Plus, a 
have a nice sized polyp on the right size. He is surprised my oxygen levels aren't worse. Basically, we are going
to start with a big blast of oral steroids and a nasal steroid spray to deal with this polyp.

If it doesn't go away, then we are talking surgery. I will probably have to be on the nasal spray my whole existence

because I have a dumb nose. Start on Pilocarpine for my dry mouth. Talked about surgery for my stupid nose. And
then talked about my other symptoms.
What my rheumatologist thinks...
And then I saw his wheels really turn when we talked about the Lyme disease. Ding ding! We have a winner!
...and who I want to attack her.
He has a wife. She has the lyme. And has had it for over 30 years now, and has been all over the U.S. trying to find
doctors who could deal with it. Fortunately for me, this doctor has gained all sorts of knowledge on it. He said that
I have all symptoms of Chronic Lyme Disease. And especially since we aren't 100% sure on how long I have had it 
before it was treated initially and diagnosed, it makes it that much worse. Even my enlarged turbinates are due to the lyme.
There are not many doctors that know what to do with Lyme and think it is gone after initial treatment (which for some people it is). 

We chatted about options, what to do, how to deal with it, etc. I may forever feel alright some days and garbage like others. 

There are a good 5-6 antibiotics to try for a 3-6 month period at a time that can help. There are different foods and things to help
with this miserable crap. He pointed me towards a facebook group. We are to re-evaluate in a month and go from there. 

There are a few other things that need to be checked out but GUYS. SOME KIND OF ANSWER.

How I try to deal with this on a daily basis. Especially at work.
So I kind of know now what the hell is going on. And yes, I probably won't be getting any better. But I feel some weird 
kind of comfort now. Ass kicking may be questionable. But I know one thing. I ain't going anywhere. And I am going 
to ride my damn ponies.
Well, that. And a bacteria that rides around on a deer tick. Which helped initiate the auto-immune stuff.
And hey. I leave on a Mexican cruise tomorrow for our delayed honeymoon. Can't complain too much!


  1. Yay for answers!!! And hell yes for a mexican cruise vacay! I have my fingers crossed this doctor continues to be amazing and you get some relief.

  2. Wow. Glad you found some answers. Sometimes not knowing is the worst part. With a diagnosis, at least you know what you are up against. I hope you find some solutions that allow you to kick Lyme Disease's @ss. I live in the Lyme Disease Ground Zero area of the country, and I live in fear of getting it. It will mess you up.

  3. I'm so happy you have some answers (and a very helpful doc). Enjoy your vacation! :)

  4. AAHHHH! YAY! This is great! Congratulations.

  5. what perfect news to hear before your honeymoon!!! you must be sooo relieved to finally have found a doctor willing (and capable) of digging deeper!! wishing you all the best of luck that these initial treatments/approaches will make a big difference!

  6. Lyme is the shits! I hope you've finally found a good path of treatment for it!

  7. So glad you found this guy. Also Blake.

    Enjoy that honeymoon, then come home and kick some ass!

  8. Yah! I'm so so glad you have some answers now and a direction to head.

  9. Glad you got some answers/resolution! Have fun on your cruise!

  10. YAY for making progress on Goal No. 1!! I have a friend with chronic lyme and her mom has it too, and they just casually joke about it eating away the higher math parts of their brain... but I've seen how shitty those symptoms can be. Dietary changes really, really helped my friend, and while she still splurges every once in a while (one of her things is gluten), she at least goes into it knowing she will have to take the next day or two off. Good luck with treatment! I hope to hear soon that you are feeling better. :)

  11. Very belatedly catching up, I have had this on my to-read list FOREVAR.
    Sorry i couldn't read it on my phone and haven't had the chance to catch up on a "proper" computer screen at work. I am so glad that you finally have answers and a plan to get back to doing the things you love!
    Now to continue binge reading to catch up on all the things FMNM!