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Multiple Systemic Infectious & Viral Disease Syndrome
While working in hospital on night shift, I thought I had a stroke when vision went blank on right eye, tachycardia, weakness, and numbness. Called supervisor and went to ER-dx. with ocular migraine (never experienced migraine in my life). Refered to Opthamalogist and Neurologist. No mention of Bb or other infections. I figured it out got quickest appointment with Critical Care ARNP-Western Blot(neg) and referal to Infections Disease MD. Went to ID associated with hospital I worked in with convincing sx. of Lyme repeated WB (neg) and later other testing including 1 for EBv (positive) Reorted to me I had mononucleosis and there was nothing to be done. Asked for monospot (neg). Somewhere MS was mentioned and I pressured ID for doxy script. Within 3 days felt some relief, yet ID doc would not tx. for Bb. Requested IgeneX(pos), about 3 weeks later after research….and hitting urgent care, ER, and another Neurologist. ID doc after earlier bet (cookies) welched on bet, tried to only give 2 weeks IV antibiotic-I requested at least 6 and he changed to 4 weeks IV via PICC. (Not covered by hospital employee insurance, and faught for disability coverage I paid into) Saved or rather used credit card for tick literate MD initial appointment. There properly tested for Babesia and Bartonella (both pos), reported to ID MD, who wanted to speak with Tick Literate MD. It was a head to head fight with all MDs, even in my compromised mental and physical state I detected from the majority MD’S, supervisor, and coworkers patronizing remarks and looks.
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ZERO!!! Not a one and I’ve seen over 40 doctors the past 20 past years.
No regular doctors would even test me for Lyme, let alone co-infections. I live in Florida, they all said there is no Lyme in Florida. I went to several doctors…several different diagnosis. I finally got a lyme diagnosis, but my first LLMD didn’t even test for co-infections. It was 2 years later that the first LLMD sent me to another LLMD…finally I was tested for co-infections. It only took 10 years.
Over 12 mainstream doctors laughed me off. Wouldn’t even test me or consider it. It was all in my head. Lymes sufferer for 40 years now. This will sound crude… But I WISH I had cancer instead of lymes.
Cancer patients know they will get help, compassion, lots of research, lots of options. They know they will either beat it or die.
Lymes sufferers get none of that. Pathetically little research, hence no options. Glazed looks from friends rather than understanding. And it takes FOREVER for lymes to kill you.
I did. Well, after i went to ER and was dismissed with too much stress and just a bug bite, 5-6 months later I was dx by and Internal med Dr for Ehrlichia, then sent to ID and after 5 tests the fifth was the winning one! I treated those 5-6 months with abx myself that i found around the house and relatives houses just to survive because i knew I was sick with something from the bite. Now 5 1/2 years later, many single dose abx, 2 PICC Lines and after many many ID drs, specialists, and primary dr’s I am finally getting the proper treatment for Babesia that never showed up and several others.
I’m like BettyG, Iowa.
After 36 years and countless doctors, NONE mentioned Lyme disease.
It took a naturopath (Dr. Klassen in Aberdeen, Idaho) looking at my blood under blackfield microscopy to diagnose me. He said “You have spirochetes”, and I said “Spiro–what’s” A second doctor (Dr. West in Pocatello) confirmed it.
out of 35 yrs and 40-50 drs., NONE asked any of the following IF:
.. i had a tick embedded;
.. had a bulls-eye rash or any type of wierd rash;
.. NEVER mentioned LYME disease at all.
I do dog rescue and was dealing with a dog hoarder in a rural area where I live. It was in the winter and I was crawling over fences and going through weeds, etc. I kept getting sick off and on for months. Finally, I went to my Dr. 3 times in June of this year. He said I had a viral infection and I needed to rest and drink lots of liquids. When I went on the 3rd visit, I saw the PA. She ordered blood work and on July 4th I was diagnosed with Lyme Disease and went on the 21 day regimen of Doxycycline. She walks on water for me because it was her insightfulness that finally found the cause of my sickness.
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