Hey there everyone.
I'm new, have been doing research and exploring forums... learning as much as I can about
Lyme disease and other tick-borne illnesses and co-infections. It's scary stuff, and sometimes the fear overwhelms me... and I feel like I should give up. But I have a loving support system, amazing people around me.
Because of them, I want to fight.
I'm a 26 year old married female who was diagnosed with Multiple Sclerosis 7 years ago. I've had various MRI's, no spinal tap. Here is a somewhat old MRI image of my brain.VIEW IMAGE
(Note: I was bitten by several ticks before my MS diagnosis, but I would have never thought anything of it...)
Anyway, I was put on various medications over the years for MS - Beta Seron and Gilenya. They took a toll on my body, and last year I decided to stop my MS meds. I also dropped my anti depressants.
Last year I was also bitten by two deer tick nymphs, in my armpit. No rash. Not too long after I got flu-like symptoms, and I thought it was from the heat. It went away on its own. I did mention to my doctor I wanted a lyme disease test but he told me that since I didn't get a bullseye rash it would probably be pointless, and the tests tend to be inaccurate. From there, I thought everything would be fine.
Fast forward today. For the past 3 weeks I've been getting horrible symptoms. It started off with pain in my upper right abdominal quadrant area - where my liver, gallbladder, kidney is located. It feels like a squeeze and a stab if I eat. Then I developed pressure / pain in the left quadrant, where my spleen is. I went to the ER - got blood tests, urine test, CT Scan and an ultrasound. They essentially found nothing alarming. I got a HIDA scan to test gallbladder function - it's working fine. My current symptoms, progressing rapidly by the day are the following:
Swollen lymph nodes under jaw, Pain continuing in upper abdominal quadrants, dull aching pain in the bones of both my arms, stiffness of neck, cracking joints, overall weakness especially in my hands, sensitive nerves, burning pain of my legs muscles (comes and goes), knees feeling swollen - develop heat rash when I take a warm shower, shooting pains in ankles (comes and goes), back muscle pains around shoulders, pain in my hips, depression, anxiety, panic attacks, thrush (yeast infection in my mouth - treating with an antifungal), sore throat in the morning, problems sleeping (I stayed up for 5 days straight, finally able to sleep last night), heart beating fast and rapidly, weight loss, petechiae.
I just don't know what to do now. My husband and I are currently poverty stricken. Our family members aren't better off and everyone is just scared. No one wants me to give up, and everyone keeps telling me it's just an MS flare, but I know what MS is suppose to feel like. I see a doctor on Monday and I'll address these symptoms to him... but I just... I don't know. I'm on Blue Cross Blue Shield Silver plan and it's been helpful, but I hear that insurance companies may not pay for anything lyme related, especially if you may be a chronic lyme sufferer.
Also, I live in Lawrence, KS and I am indeed curious as to where a LLMD would be located - I know there are a few in Kansas. If you can e-mail me a doctor I can at least be aware, even if I won't be able to afford to see one.
I have a few friends who are willing to loan me money for a lyme disease test, but I know this is a clincal diagnosis and a test isn't always necessary - but can surely help. I hear Igenex is the best way to go... but I really don't want to waste anyone's money. Should I just get the ELISA and Western Blot and hope the insurance covers?
Truly, I apologize for such a long post, tl;dr etc, but any tips or advice will be appreciated. I'm very frightened, I feel like this is a nightmare. I've debated whether or not I should just avoid seeing any doctors and let nature run its course, even if it means more symptoms, suffering and eventually death. Yet I have people I absolutely adore and I know me leaving would cause them great pain... I wish I could live long and prosper with them - more than anything.
Thank you, thank anyone who takes their time to read this. From the bottom of my heart.VIEW IMAGE
Post Edited (Chatloup) : 3/8/2015 6:17:32 AM (GMT-6)