Posted 8/8/2014 12:05 AM (GMT 0)
Hello All!
I finally met with my "LLMD" today. It's in quotes because I don't believe that he really is LL.
Here's my backstory again, briefly. I was bitten by a tick in 2009 (I thought it was 2010, but I recalled eventually that it was '09). The head came off in my hip. I had a large welt around the bite for two days. After that, I developed a textbook EM rash. I had no idea that meant Lyme Disease.
I had strange symptoms for years, but I've really been declining over the past six months. I came across an article on Pinterest about Lyme Disease and saw the rash and suddenly everything made sense. So, I found and LLMD and scheduled an appointment.
During my first visit, I told him of my concerns. He seemed convinced that I had Lupus and low Vitamin D. However, due to my grandmother having Lupus, I've been tested in the past and it's always been negative. And yeah, I'm probably Vitamin D deficient, because I can't handle heat or sun at all, so I stay inside.
Anyway, he sent me for a ton of blood work, an MRI, EEG, ultrasounds of my carotid artery, thyroid, parathryoid, a neck X-ray and a chest X-ray.
My lab results were emailed to me last night and showed that I have an underactive thyroid (confirmed by the goiter they found in the ultrasound), Vitamin D deficiency, low B12, 41 KD (IGM) Band Reactive, 23KD (IGM) Band Reactive and Lyme Disease (IGM) Positive.
So, my follow up appointment was today. The doctor first tells me that I don't have MS, Lupus or seizures. He then said I have Hashimoto's. And he said the MRI and EEG were normal, other than indicating that I'm having blind optic migraines. Then he said I have the B12 of an 80 year old, and he's concerned about that.
He said he was going to get me a migraine prescription, ordered more blood work for thyroid and B12 and was going to send me on my way.
I said, now wait just a minute. I was emailed the lab results and they said IGM positive for Lyme! He said because only the IGM was positive, that meant that I had a prior Lyme infection that is most likely gone. Here's the thing, I'm deathly afraid of antibiotics, so I've only taken 7 days worth in the entire 5 years since I was bitten (and got sicker while taking them!).
He told me that he wants me to see a colleague, an infectious disease doctor that specializes in Lyme Disease for further testing. I stayed adamant that there's enough information to make a clinical diagnosis. He just kept saying that the thyroid and B12 are causing my symptoms. It doesn't explain all of the strange things that have been happening, though. And I have several symptoms that are textbook for Lyme.
Tremors
Bell's Palsy
Deviated Uvula
Hives when skin is stimulated by heat
Beau's Lines
Baker's Cyst
Molar Pregnancy
Sweating
Gallbladder inflammation
Feet pain
Daily headaches
Stomache cramping
Insomnia
Depression
ETC!!!!
He said he doesn't want to make the diagnosis because he believes that my body successfully fought the disease on it's own, and he doesn't want to start IV antibiotics until further testing is done by the other doctor, because he doesn't want me to get thrush. I said we could try oral doxycycline and see if it triggers a herx reaction. Nothing.
This other doctor is out of town for the next two weeks and I'm super frustrated. I'm emetophobic (phobia of vomit, vomiting, seeing others vomit), and it's quite severe, so I tend to avoid all doctors. I don't think this doctor understands that I'm absolutely not a hypochondriac. I actually only go to the doctor when I know what's wrong, because I'm panicked about being sent to a million different doctors.
Does anyone have a similar story or any other advice? Thanks in advance!