Birthdays are supposed to be a glorious time, even though we hate aging. And camping with our family is suppossed to be relaxing. However, within one week of going camping, I became seriously ill. By my 26th birthday, I began to forget where I was going, my head and neck were killing me beyond belief,and I developed a tremor, stupor, confusion and severe vertigo. Was I losing my mind? Did I have anxiety? MS? HIV? Everything was beginning to run through my mind and it didn't take long for me to realize that even my mind was changing. What day was it? who was I? Where was I? Why did I pass up the street I meant to turn onto, twice?
Where is my kid, I know I have three, but I only brought TWO to daycare. A trip to the local ER said I have and I quote " an inner ear infection they could not see" and they put me on valium. A trip to my family doctor of over ten years said I had viral meningitis and sent me back to the ER with orders for a CT and spinal tap. I forgot how to get to the hospital and speed dialed my sister from my cell phone frantic. "My doctor said I have viral meningitis, I have no idea where I am."
The ER did the CT scan of the brain, but refused the spinal. They said I had a "migraine" ( well thank you so much for your input and diagnosing me with ONE symptom) and sent me packing with Darvoset. Days turned into months and I was only getting sicker. My neck began to crunch. My knee started to ache. I couldn't think straight, couldn't see straight, and I was dizzy beyond all belief. Nothing helped. I went back to my regular doctor who told me I had a ruptured ear drum -- said I had labrynthitis and that it would go away in days, months or even years!
I went to an ENT/Neurologist who did tests to see if it was indeed my ear ( ENG, Rotary chair testing, etc), all came back normal. It wasn't my ears, but again, I was told I had migraines. They gave me another medication of which this time, made me worse. I switched doctors and went to another doctor who said the problem must be within my ears because they were so red. He gave me something new this time.......... an antibiotic along with allergy medication.
Within two days of taking the antibiotics, I began to feel better. Two days after finishing the antibiotics, I was right back to where I started. I could no longer get out of bed, I was too tired, my whole body ached. I switched doctors again, this one telling me it was all in my head and that I needed antidepressants. I couldn't take anything any longer. A chiropractor gave some relief to my head and neck pain but commented that he could not figure out why my neck was staying swelled and why I was not sticking to his adjustments.
A holistic doctor said I had candida ( which I DO) and that that was my entire problem. Within two weeks of eliminating sugar from my diet, the VERTIGO did end. How nice, I was left feeling drunk, 24/7, constantly feeling drunk, high, stupid, cloudy. Oh God, it's fibromyalgia, chronic fatigue; I will stay like this I thought. Depression kicked in. I'm going to die. "I'm 26 years old, and I am going to die, and when I do, doctors will go OHHHHHH THAT'S WHAT SHE HAD". I was at my rope's end.
Then, I found a Lyme disease specialist. It was on my great and wonderful list of things to be tested for. I saw him and he was excellent with me, and said I was a classic lymie. Only problem was, how long did I have Lyme? Not only is there not an accurate test to diagnose Lyme, even if you DO have Lyme, you can only TRY to guess WHEN you got it. I didn't take sick until after camping, so I estimate I had/have Lyme EIGHT MONTHS before being treated. Did I catch it in time? Only time can tell. Do I have Lyme?
Only time can tell. My Western Blot came up equivocal, and you know what? For me, that is enough, because nothing else in my body can be found wrong. I was checked for problems with my ears, brain, neck, heart, kidneys, liver, pancreas -- You name it, I was checked for it. Normal, normal, normal. I began my therapy for Lyme disease; 4000 mg of antibiotics a day. I stopped on the second day because I was so weak and running a fever, I thought it was killing me.
Within the next two weeks, my vision starting going out on me even though I have 20/30 vision, and I started developing muscle twitches, more tremors, electric shock feelings in my feet, sleep apnea, and heart palpitations as well as severe shakes when sleeping as well as nightmares. Enough was enough. Antibiotics or die anyway, I thought. So, I began my antibiotics again. I have been taking them religiously for three weeks now. I waited and waited for the "all time clue; the fever that you should get if you have Lyme". Bingo, second week of antibiotics, I began to get the fever again.
Then, I got severely depressed and balled constantly, for three hours straight. Aggitation was an understatement. I sincerely wanted to drive myself off a cliff. I kept going and kept taking the antibiotics, and finally, after a week , my Herxheimer was over, but I was no where near the end of my battle. The antibiotics cause me to squint, which in turn causes tension headaches. However, the list of things that have GONE are as follows:
Muscle twitches (only once in a while, I will get one)
Painful, stiff neck
sore throats and sore ears
infected lymph node in neck
cyst under ear that they were going to surgically remove
brain fog/confusion/drunk feeling (knock on wood because out of all, I HATE the drunk feeling, and that has only been gone for the last four days, maybe)
sleep apnea has ceased and no longer remains
I still get:
the electric shock feelings in my feet and the tremors
whole body tremors at night (probably due to Co infection, which I will be tested for)
And alas, this is almost week four of my treatment and a new, stunning development has occurred. On the top of my left foot, about an inch before it wouldn't even BE my foot any longer, I have developed the perfect BULL'S EYE RASH. I guess the antibiotics flared something up and it began to hate me, and lo and behold, it has come out to play. I hate it to think "if I just would have moved my foot..... but then again, you don't even HAVE TO GET THE RASH where you were bitten".
I am off to Herx again and right about now, I may have Lyme but I know that I do not have and I list only some: heart disease, Lupus, schleroderma, MS, MD, HIV, AIDS, Hepatitis, labrynthitis, cancer in any organ of the body, CMV, Esptein Barr, etc., etc. etc.
I hope this story helps someone and that everyone can battle their chronic Lyme. With proper checking for co -infections (you can NOT beat Lyme without nailing the co-infections) and a little bit of anti-fungal medications or a lot of yogurt -- those antibiotics go a long way and they can't hurt you. As for me, I was sick for 8 months before I began treatment, and I even had the antibiotics on month seven, I just would not take them (DO NOT DO THIS!). There is life after Lyme, I just can't help but think that if I beat this demon, life can only be better.
Not one doctor I saw believed I had Lyme, even though I asked to be not only tested but helped. What we go through is a shame, and a disgust. There is no single test for Lyme that can tell you 100% if you have it OR DON'T. Get the antibiotics and take them. Better yet, get a specialist; someone who will give you the antibiotics and THEN determine if you have Lyme or not.
And hey, if you don't start to get better within a few weeks of taking the antibiotics, chances are either you don't have Lyme, or you have an underlying co infection that no one has thought to check you for. Good luck to all.