Iv'e been following the forum for months and posting for a few weeks I decided it was time to post my story perhaps to enlighten others, but also just to write it all down to get it off my chest.
It seems like a nightmare that I just can't wake up from its so tragic it doesn't seem real.
It all started nearly one year ago today.
It was a hot summer day like today and I took my beautiful collie Brody for a walk like I do everyday. We went to a local recreation park here in west ga near chattahoochie hills. I had been pulling ticks off of me and my dog all summer and didn't think much of it as he was on frontline and I though that would protect him. I had been bitten by numerous ticks over the years and never had any obvious problems, besides some small recurring itchy rashes going back a year or so that a derm told me were 'scabies.' Like many I thought lyme didn't exist in the south, and even if it did, it would just be self limiting like giardia or something, nothing to worry about
and I had no knowledge of any coinfections. If I only knew.
We were walking through an overgrown trail with thick brush and I even recall thinking 'this is tick city' but I just kept going. It was the longest day of the year so I wanted to be adventurous. I remember pulling ticks off left and right and just thought as soon I see them i'd pull them off. How stupid I was.
We got back to the car and on the way home I started itching. I pulled two off my stomach that were attached. Then I noticed another on my neck also attached. These were all large female lonestars. I pulled so hard it nearly took my skin with it. Still thinking nothing of it, I came home ate dinner and went to bed.
A couple days later, I woke up with an itchy back reached back to scratch it and felt a lump. I pulled another attached tick off my back. That same day I bathed my dog an there were 4-5 ticks that I saw in the tub after draining it. He has such thick fur and many places for them to hide. Still nothing to worry about
, or so I thought.
The weeks went by. I had a nice routine summer and everything seemed fine. It wasn't until late august that I slowly began to realize something was seriously wrong. I was a dedicated athlete working out vigorously 4 times a week eating healthy and very in touch with my body. I began to slow down and became more easily fatigued. Having just turned 33 I thought maybe this is what natural aging feels like? The bites hadn't healed at all in this time which I thought was strange. I began to notice strange aches around my obliques near my kidneys. Soon I began to have strange numbness and tingling in certain areas and I remember feeling dizzy and lightheaded.
I also began noticing changes in my dog who I was extremely familiar with. He was slowing down and panting a lot. His skin seemed rougher and he seemed to have a lot of diarrhea and gas, so did I.
So I then began researching Lyme and tickborne diseases in earnest, in both dogs and people. (and haven't stopped since) I was terrified in what I found, but believing the cursory info I found on the CDC site and other mainstream sites, I believed what they said and thought a couple weeks of antibiotics would cure any and all tickborne illnesses. I came across a little bit of info about
lyme becoming chronic, but didn't give it much thought. I believed based on what I had read that 3-4 weeks of Doxy was the miracle cure all.
I had never been sick and always avoided doctors. Not really having a gp, I went to my local immediate care and requested 28 days of doxy. The doc was agreeable to this and admitted he had little experience with lyme. So he wrote the script
and ran an elisa and a cbc. (After now seeing many other docs of varying specialties, this 'minute clinic' doc remains the most thorough and professional I have seen.) He called me back in 3 days and told me my elisa was neg but my wbc was sky high and to finish the doxy.
I then went to my vet, who was a local old fashioned country vet, who wasn't so agreeable. I basically argued with her and without revealing my own symptoms told her I knew my dog well and he wasn't acting right. I told her I knew he had lyme. So she agreed to do the instant lyme test and I remember thinking why did I have to wait for lab results when the dogs test was instant? the dog test came back negative for lyme. (I noticed that his blood wouldn't clot on the area of where she drew it, another indication of tick borne illness.) Then she ran another test and told me 'you had the wrong disease, he's positive for ehrlichia' She then gave him 14 days of doxy, at a dose that was 2x my own, which I thought was strange.
So me and Brody faithfully took our doxy and hoped for the best, believing everything would be fine and I would learn a lesson to avoid ticks in the future and get back to our happy life.
My health became worse. I remember standing in front of my mirror and it was almost as if a black cloud washed over my brain and my vision, I could literally see black waves creeping into my vision like a dark cloud and as crazy as this sounds I know now this was the exact moment the disease overtook my blood brain barrier and entered my brain permanently. I began having a few episodes of tremors where my legs would shake uncontrollably. I had extreme anxiety and for the first time ever extreme insomnia. (I used to sleep 8-10 hrs with no problems) I tried to get back to my vigorous lifting and cardio routine thinking I could sweat all this out. I did my normal workout, but I noticed afterwords my heart rate never decreased, it just stayed high and heavy. That night I was completely unable to sleep feeling my rapid heartbeat I tossed and turned and just watched the hours go by frustrated never falling asleep and cursing the coming of the sun.
Still I dutifully took my doxy and expected a full recovery.
Later on in September I was bit AGAIN! I went back to the minute clinic and requested another four weeks of doxy, which the doc agreed to.
Wanting to get on top of this disease, I looked up a doc who advertised lyme treatment in Atlanta. It was the Holtorf group. I was able to get in to see the doc there, although not an llmd, she prescribed more doxy with ceftin and flagyl as well as diflucan. I thought this would kick it for sure. She tested me through igenix for lyme and labcorp for coinfections. I also went back to the vet and got a refill for Brody as he seemed to slowly be getting worse as well. It was so strange how our symptoms mirrored eachother.
Weeks went by and I was still having problems so was Brody. I began having extreme vivid dreams, after a lifetime of rarely even remembering dreams, dreams were now more vivid than reality itself. My libido tanked and I had such bad heart palpitations I reduced my 4 day per week 4 hour lifting routine to 30 minutes of light cardio only once a week. I was getting chills and shaking. Having never taken any pharmaceuticals, I couldn't tell if it was my disease or the meds.
Soon my results were back. CDC positive for lyme on igenix but negative for babesia and bart through LabCorp. She also told me I had evidence of a blood parasite and traces of rbc destruction which could indicate babesia even with a negative test. Like many I felt a sense of relief at lest knowing what I was dealing with, still not really understanding the controversy of chronic lyme in mainstream medicine. My doc kept me on my same meds and also gave me some of the supplements specially made for their clinic called adrenal repair and immunostim (mostly mushrooms), along with results rna sprays which were silver, glutathione and zeolite.
I share a house with my dad since my mother passed in 2013. We also have 2 cats. Around this time I began noticing one of our cats was acting strangely lethargic and weak. She was losing her hair on her belly. Great I thought, her too? I took her in to a different vet and had her tested through one of the most comprehensive tick labs in the country at NC state. She came back positive for 3 strains of Bart. The vets had no idea how to treat this and suggested doxy.
At this time I also noticed my dad becoming progressively weaker and fatigued. He knew what I was going through and I told him it was possible he was also infected. He was and still is in complete denial. I suggested he try some antibiotics. "I wasn't walking through the woods like you were, I never got bit."
By the end of the year I had enough. desperate, I decided to try a more conventional approach and at least get an opinion of my local ID doc. This is when I began to learn the travesty of IDSA and the blatant outright denial of the CDC first-hand. I never thought modern medicine in the USA could be this willfully ignorant and leave so many patients stranded like this. Needless to say, he was of little help and doubted my diagnosis suggesting antidepressants. My symptoms are so strange especially neurological and mental that I couldn't tell if it was the meds or the disease, so I stopped treatment. I still haven't resumed treating because now I am so afraid of the massive herx that awaits me after not treating for over 6 months.
I wish this story had a happy ending. Here I sit 6 months later paralyzed by fear and watching everything that I care about
slowly falling apart from my own health to my dad's to my beloved animals, all at the same time.
I don't really know for sure what we all have, but all of our symptoms are similar and came on at the same time and are progressing at the same rate. Whatever it is, it's highly virulent and has spread through my entire house like a biblical plague. I feel cursed.
My days weeks and months fly by and I never want to wake up to face the next one. I spend my days desperately wishing I could just go back in time 1 year.
Our symptoms become worse and worse and scarier and scarier as I spend all of my time scouring the web for all things tick borne, reading literally hundreds of first hand accounts from blogs, to go fund me requests, dense medical and veterinary journals and studies and everything in between.
My mental capacities are suffering grealy. I forget everything, my brain no longer functions. I leave groceries on the counter at the store, misplace everything from cash to wallet to keys. I am like an alzeimers patient at 34. I spend my days in a frantic anxious rush breathing rapidly with a pounding heartbeat and sweating when i'm not sleeping or struggling to keep my eyes
open. I'm wired and exhausted all at once.
I'm losing my appetite. I only eat as a ritual and have lost 10 pounds and nearly all muscle mass I once had. I begin to have severe weakness and muscle atrophy along with difficulty walking, breathing and swallowing and begin to fear the worst based on all the horror stories I have read from peoples experiences ranging from MS to ALS and complete disability and death, not to mention the complete financial and emotional ruin many face in the quest for a cure.
As soon as I try to consider what to do about
my own health my thoughts turn to my dad, to my beloved dog, my cats and not knowing what to do or having the first clue in how to help any of us. It's all just so completely overwhelming. I wish it was just me that was sick, at least then it would be manageable, but now I have to worry and wonder about
my father and my beautiful loving animals, not to mention the guilt that I brought this curse into our home.
One year ago We were all happy and healthy and blissfully unaware of these insidious tick diseases. I wish I never had to know about
any of this. I was just an average healthy, active, outdoors loving animal lover like so many millions of others, and now from my love of animals and the outdoors, we are all being struck down.
I just want my healthy animals back and the simple innocence of everyday life.
This is a true sob story. I really don't even know why i'm writing this. I don't write this for sympathy or even advice as I know many of you are suffering even worse. I feel I have no fight left in me and am beset on all sides. I hope I don't discourage those of you fighting hard everyday. I just want to share my story with the world in some small way, and write out my one year horror story, even if its just for my own sake. It seems I have many more years of this to come with no end in sight. It just seems so unbelievable. Like a nightmare that never ends and just gets worse and worse. All from some seemingly simple insect bites a year ago. And my tragedy just continues.....
Post Edited (logmoss82) : 6/24/2016 2:42:40 AM (GMT-6)