I don't know where to begin. My illness has progressed to such a breaking point - you just wouldn't believe. And I'm partly to blame.
I've been sick for 3 months...out of work for 3 weeks. I've been to GP's, rheumatologists, a neurologist, endocrinologist, gastroenterologist, ENT, pulmologist, cardiologist, opthamologist and dermatologist. And not ONE of them suggested testing me for Lyme. I've been to the ER close to 10 times (everyone thinks I have "anxiety" or severe thyroid disease). On a side note, my thyroid MAY be involved...not sure yet. But I think the likelihood of Lyme is high enough. BUT, I am afraid I am not diagnosable because I am currently on 20mg of PREDNISONE (currently weaning down but it will be a month or more). AND, I also take hydrocortisone for adrenal insufficiency. It's my understanding that steroids suppresses the antibodies that are read by the tests.
I think I read somewhere that they can test your blood for the DNA of the bacteria? Does anyone know if there are other ways to diagnose this? I am not doing well. And if this is Lyme, I've had it for more than 6 months - with steroids suppressing my immune system. All of my symptoms may or may not be related. Here's my story:
profuse sweating for 1-2 years (I mean PROFUSE...but random episodes that would last about
30 minutes and happen once or twice per day and at night).
flushing (very red chest)
middle back pain that started in January (feels like a kidney stone but higher up)
blurrier vision that started around January (notice it's a little blurrier in one eye)
sudden onset of hypertension and shortness of breath in May
sudden onset of tremors, severe arthritis in arms and tinnitus/muffled hearing in early June. I have Hashimoto's and one relative has had RA so I assumed this was autoimmune (and maybe it is...still not sure).
My GP tried a few meds that didn't work. I made an appointment with a rheumatologist and grabbed some prednisone I had on hand to hold me over (I know...bad idea). But it did take all the pain away. While on the pred, I developed extreme weakness in my legs (I believe from the prednisone).
So the rheumatologist is having me wean off the pred so he can "see" my symptoms. As I've been weaning, here are the symptoms that are surfacing/reappearing:
dysphagia/swallow reflex problems
hoarseness at times
burning high pressure headache / pressure behind eyes
tinnitius with muffled hearing and cognitive/memory problem episodes that last hours (can't even remember my phone number!)
burning (sometimes icy) sensation in my head / ears
I ONCE had a tingling crawling sensation through my head. I know this sounds crazy but...I swear, I felt it. Now it happens on small parts of my scalp.
tremors in my forearms (when trying to do small tasks)
burning sensation on the skin of my arms. I have actually seen the skin turn slightly red...only for a few minutes...then go back to normal.
dulled sense of smell and taste
numbness/tingling in fingertips (maybe from prednisone)
numbness/tingling in lower legs (maybe from prednisone)
gastritis (diagnosed via endoscopy)
shortness of breath (small airways constricted)
So my endo had me on pretty high doses of thyroid meds for years. I never had a problem. Then my GP and rheumatologist decided this is severe hyperthyroidism and proceeded to assign me a new endo (or they won't help me). Now the 3 of them are hyper-focused on weaning me off of ALL of my meds before addressing anything else. I did get the rheumy to order the western blot. But like I said, I don't think this is going to show anything. On a side note, 2 nodules were found on my thyroid gland and I can't get one of these doctors to do a biopsy (15% of thyroid nodules are malignant!). I'm in a lot of pain. Just feel like my whole being is on fire. Can't work. Might lose my house. And I can't get them to do a biopsy. I need better doctors.
Ok...sorry for digressing. I'm trying to pursue 2 things at once here. Ruling out Lyme. And getting my thyroid nodules biopsied.
fyi, I've had pretty much every part of my body scanned except colon. Brain MRI, cervical MRI, chest CT with contrast, abdominal/pelvic ultrasound, renal CT scan, lumbar MRI. All normal.
I'd prefer an LLMD that uses conventional medicine (thorough testing and antibiotics) who accepts insurance but I am willing to pay out of pocket if I have to. Can anyone suggest a good doctor in Maryland? I live in Columbia and can drive a few hours at most.
Thank you for any advice you can give. I'm feeling pretty hopeless...
Post Edited (Amanda F.) : 8/10/2016 10:07:43 PM (GMT-6)