I agree 110% with OP. I've had lyme and still have it. I caught it somewhere in Northeastern Ohio where I live. About 8 years ago a new symptom would appear every two weeks. I have no clue when I was bitten, I never even saw a stupid rash. I honestly suspected a nasty horsefly bite but I'll never know and that isn't the point. I kept going back to the family dr with new symptoms. He was puzzled. We tested for everything possible. Syphilis, HIV etc. The generic family dr lyme test came back negative. I honestly thought I was losing my mind. My Dr wanted me to go to a neurologist and claimed that everything pointed towards MS. Great, MS is almost identical in symptoms but MS treatment doesn't do crap. I was 27 years old at the time. So I convinced my Dr to draw my blood one last time and send it to a lab that specializes in Lyme. I finally found an answer to all the retarded 70 symptoms I had.
So i went and visited a Lyme dr across the border into Pennsylvania. He started me on high dose, long term antibiotic treatment because my family dr would only give me 30 days of doxycycline according to the CDC(what a joke that was). So about 4 years of antibiotics got me to a point of symptom free. But when I stop antibiotic treatment, the symptoms start to slowly creep back after about a month. So what I do is just one doxycycline pill per day to keep the symptoms away. It's much better to take just one a day then have those nasty symptoms return. I have also had to take acidphilus the entire time to keep the good bacteria living in my intestine.
I also take an antifungal every 3 months to keep the yeast at bay.
I had tried many different alternative treatments for lyme but found that doxycycline was the cheapest and worked the best. My lyme Dr noticed that different antibiotics worked for different people or strains of the lyme bacteria. I also tried just about every antibiotic possible while experimenting with my Lyme Dr. The other challenge is treating the stupid co-infections that come along with the insect bite. Below are some of the treatments I tried.
Cats claw(samento),garlic, oregano, olive leaf extract, hh capsules, black walnut, clove, nano silver, grapefruit seed extract etc etc
Doxycycline, Roxithromycin, Clarithromycin, Bactrim, Amoxicillin, Levaquin(that stuff was hell), Cipro, Pennecillin, Tetracycline, Minocycline, Flagyl, Rifampin, Keflex etc etc
Below are my symptoms at the peak of the illness.
Increase eye floaters
Night sweats on my head and chest area only(drenching)
tingling on one side of face
stange images in peripheral vision
flashes of light in my vision during the day
flashes of light at night when i close my eyes
feelings of impending doom or death in the middle of the night(severe panic attack)
uregency for a nap in the middle of the day
anger at about 3 pm every day
forget common words
joint paint(especially in lower back) and old injuries
tingling sensations on hands
constant muscle twitches
irregular heart beat, heart palpitations
worse hangovers from very little alcohol
lack of interest in hobbies
increase in face tingling when laying down
light sensitivity(wore sunglasses, even on rainy days)
Pain on bottom of feet in the AM
swollen gland in neck, near ear and jaw
swollen glands in armpits
pain in gall bladder area
etc etc etc