Posted 3/3/2014 11:58 AM (GMT 0)
I would appreciate you taking the time to read my story and give me some insight on what may be wrong or if we have similar symptoms and what you were diagnosed with etc. thanks!
In July and August I had 2 sets of bug bites that I assumed were spider or some other insect bites. Wasn't sure how I got them bc the first appeared on my back as 5 big welts at work one night. The arm next to the bites felt stiff and my hand like curled up and felt somewhat paralyzed for a while. For several weeks afterwards I had pain and stiffness down that arm that was suspected nerve pain. Then in august I had one small bug bite on my toe that appeared in a restaurant. Within 2 days I had cellulitis in my foot and leg from it and went on high dose clindamycin. I Spent some time outdoors in the summer but the bites showed up at weird times indoors and i never had a real bullseye rash.
At the end of abx treatment for cellulitis, I got a fever nausea and shaking chills at work and felt like I might pass out, And felt pain in my leg. went back to the hospital thinking the cellulitis was spreading but they didn't find anything and sent me home. This is when my health really took a turn for the worse and the endless weird pains and symptoms began. I apologize for the book that follows...
I began to have low grade fevers very often with a weekly fever every Friday and Saturday night of up to 102 like clockwork. I had terrible pains in my gallbladder area and a lot of nausea/stomach issues. That checked out fine. I seemed to get pains in my liver and kidney area around that time too, I was even misdiagnosed w a kidney infection bc I had horrible pains in my kidneys for days and a lot of bladder dysfunction. BTW The only Lyme-like symptoms I've had for a few years before this All started in august are only knee pain, getting sick often, and peeing a LOT esp at night. Between July and august I had recurrent strep throat 3x- but not group a? Thought my bf was a carrier. I was treated with doxycycline and did not herx at that time. Was also treated by PCP who,follows cdc guidelines 'just incase' for Lyme only 10 days of doxy and I herxed mildly and he thinks I'm cured regardless (little did I know). I had a near fainting episode while sitting doing hw, and lost control of my bladder. At the hospital they thought it may have been a seizure. I started having heart palpatations and pains, my tests show some arrhythmias that docs don't seem concerned with, but sometimes my heart would race for days. I usually almost pass out when I stand up. I was also very fatigued with lots of neck creaks but only mild joint pain at the time. My brain dog and memory became so bad that I dropped out of school. And I had a rash of broken blood vessels. I had lots of muscle twitches too. These are my pre-Lyme awareness symptoms.
Then BF's friend says hey we have all the same symptoms I think you have Lyme. The mimicking of a kidney infection was huge for me cas it's so weird.. So I go to her doc who tests me for Lyme and coinfections but not thru Igenex. Results are equivocal antibodies with a positive 41 band. For cos- low positive igg and erlichiosis borderline igg. Also showed high candida antibodies. This time when I'm put
Now I've developed more symptoms- worsening joint pain. Increase in severity of cognitive issues, increase in random migrating pains. Increase in heart symptoms. Severe panic attacks. Develop a lot of neuropathy- esp EXTREME pain in the fingers, toes, and legs. It feels like they're getting smashed with a hammer and usually pain will radiate up and down my legs after this starts-- feels like nerve or bone pain and is one of my most common and worst symptoms cas it hurts sooo bad and is relentless. Pain in soles of feet. Simple-partial seizure like symptoms that screw up my sense of taste and smell. Tomatos taste metallic and rotten chicken tastes like blood smelling super strong chemicals that aren't there. Sense of smell in general is super strong. Burning or cooling feeling, tingling and numbness. Legs 'vibrating' or buzzing. Neurologist checks me out everything looks OK. infectious disease clueless. PCP blames chronic fatigue due to positive Epstein Barr (had mono when I was 16 thus isn't mono again virus is just active again) been checked for most other things and am 'fine' but maybe need to see a rheumatologist.
Soo basically only doc I trust is the Lyme doc. They think I have Lyme, maybe bartonella, and erlichiosis. Don't know what to make of RMSF but again I've never had doxy until august or long enough to kill it as far as I know.
When I tried to start treatment w doxycycline I herxed VERY badly and thought I might die at day 10 so I stopped. Started to feel a little better after tho and fevers subsided. Started treating candida but then got strep throat and went on zpack which I was fine with but it didn't kill the strep. Was given erythromycin and herxed VERY badly again. Getting checked for mthfr as I seem to not be able to detox. Currently back to treating candida and will start doxy again soon, but they want to put me on a low dose 50-100mg maybe pulsing to start..
IF YOU GOT THRU MY BOOK THANK U AND HERE IS A SUMMARY:
Questions:
Do you think based on my symptoms I have Lyme? Is a positive 41 band enough? Can dental bacteria cross-react? Bc I thought 41 band means a spirochete and to my knowledge I don't see what else it could be based on my symptoms and I know I don't have syphilis or the other rare things it cross reacts with. I sometimes wonder if I have Lyme miyamotoi bc of my relapsing fever I had for so long.
Is such a low dose antibiotic (50-100mg pulsing doxycycline) to start since I herx so badly even going to be effective? I heard at that dose it just slows bacteria but doesn't kill it.. But I don't know what other option I have since I herx so badly
I think I have bartonella based on my neurological symptoms and all the leg and foot pain. If you hav Bart- do you get extreme crushing pains in your toes and in your legs? I get the same pain in my hands too.m
What treatment has been successful for you? Does anyone else have issues with herbs due to drug interactions with prescription drugs you are on? This has been an issue for me since I have to take asthma meds etc.
Thanks! :)!