Lyme disease -- NE1 believe they have it or been diagnosed with it?

KsHusker

Active member
I've had a 3 yr journey with it - towards the end I was almost believing my crappy family dr in that I needed psychiatric help as I didnt know what else could be wrong with me.

I'll pipe up later on more of the story, but here's a list of what went on with me for 3 plus years -- I always kept circling back to lyme disease but my family dr at the time said Lyme pretty much doesnt exist in KS and after a year and a half of weird stuff happening Im convinced she thought I was making it up in my head. Anyways glad I stayed with my gut feeling and research I did and sought out an infectious disease Dr in Missouri who helped me.


End of 2017-2018 - We moved out of town near Topeka to an old overgrown jungle of a country house with 6 acres - people had 20 plus years of neglect on the property -- I started cleaning it up - place was FULL of lonestar and deer and dog ticks - my dogs sometimes would pick up all 3 if they went for an extended run -- the lonestars were so bad I could not stand by our creek during the warmer months as within 5-10 minutes you'd have 4-5 of them get on your shoes and start crawling up your leg -- I was bit many times. The bite I think may have transmitted it to me I probably never knew about - from my reading a nymph (size of a pin head or smaller tick) is the most likely to transmit the bacteria to humans -- that or if you are ever dumb enough to put rubbing alcohol on one that has been stuck in you a couple days and you can't get out -- guess it causes them to barf. Anyways Summer 2018 let the dog out while we were finishing packing for a trip to Colorado - there was a small fenced in yard surrounded by brush I'd yet to clear out - she apparently laid on a recently hatched nest of ticks -- we were on the highway for about 3 hrs or so near Hays and pulled off so I could let her go to the bathroom and I noticed she was literally covered in black specks - Couldnt for the life of me figure it out - I could squeeze some of them as I brushed them off and they were all over her dog bed, all over the Tahoe carpet etc -- My vision was good enough then I kept studying these things and eventually saw one move and realized they were baby ticks -- we hi-tailed it to a dog wash in Hays and cleaned her up and got we believe all of them off (hundreds) with tick shampoo -- I then detailed our car and sucked ever last one I could see and sprayed all the edges of the trim with adams spray -- apparently in the 2 or so hours since we'd left the house they were so small they were all becoming full of blood from their first meal and fell off.

Anyways I'd guess I missed some or got something on my hand or a previous bite where I used alcohol on a tick caused me to get infected.

That fall of 2018 I started cutting down lots of trees/brush -- I'd started to get a mysterious pain in both my feet -- thought it was heel spurs but dont think it was looking back - joints started hurting really bad -- around the same time for a couple months or more in the mornings I'd be so stiff and my back and hips would hurt so bad (whether or not any physical activity was done or not previously) in the morning it would take me 10 plus minutes to get out of bed and I couldnt do it without using a bedside table to use my arms to lift myself up -- it'd take 15-30 mins to loosen up.

Then Bells Paulsy episodes started - lasted about 6 mos
Body aches and complete lack of energy all the time no matter how I ate, slept etc was always a problem
Then concentration issues started -- I'm the type that if I find a good book I like I'll read it cover to cover without stopping many times -- not so much as I've gotten into my early 40s now - but I can still nearly finish a book I like -- I'd struggle to read 3-4 pages -- my vision had problems focusing a LOT

Then memory issues started - which is strange because I remember the incidents - but I'd have issues remembering our employees names -- I'd gotten good at playing it off and not letting anyone know -- the scariest was on 2-3 occasions I didnt know who my wife was, and on another couple of occasions I did not know who my son was - these episodes lasted 10-15 minutes before I realized who they were - I was never scared as they were familiar to me but I did not know who they were to me and how I knew them nor their names --

Memory issues lasted about 6 mos then went away --

Lack of concentration/focus issues has been off and on 2-3 years

Then even more severe body aches/joint issues and depression/complete lack of energy - wanting to sleep 10 plus hours a day

Then strange heart palpitations that would last months and not stop - they'd ebb and flow

Multiple heart tests - nothing wrong
2 or 3 brain scans - nothing wrong
labs - nothing wrong
Lyme test - would say I was negative - but heres the thing about the lyme test the dr uses -- you have to pop positive for so many antibodies to be considered Lyme positive - I was one or two antibodies short - some did pop positive

You could read about lyme disease and I literally checked all the boxes - but yet I was called crazy I dont know how many times -- the dr that finally helped me believes that the strains of lyme not on the east coast have different markers that the labs do not test for and the test was developed to detect the strain of lyme common on the east coast -- so he goes by the symptoms and the fact that you will pop positive on some of the markers they test for. A long course of antibiotics was the answer and cure for me - after being on them for a month I was able to go out and work on my truck relatively pain free - my mental focus started coming back over time etc -- I feel I was given a new lease on life.

I use a service to backup my photos from my phone and it randomly pops up memories or sometimes I'll glance through them for memory sake - you can tell in pictures when I got sick -- my whole demeanor in photos was different.

This experience has certainly 100% soured me on the medical community - and Dr's in general - 99% of Dr's are completely worthless - most have a God complex in that a patient couldnt possibly know their bodies better than they do and have a possible solution
 

matto

Active member
Wow. Quite a story and I'm so glad you got it figured out. It reminds me of the old joke about what you call the person who graduated at the bottom of their class in medical school, law school, etc.

When I was at K-State in the very early 90s I had a grad student for a biology teacher. His research interest was Lyme disease. It was his passion and he talked about it a lot even though it was not really part of the Biology 101 material. He went so far as to say Lyme was going to be a bigger deal than AIDS. Those who are about my age will realize how a big a claim that was at that time.
 

Munster927

Well-known member
A big reason I get tested for Lyme each year when I have my physical. Usually you have to shell out a few extra bucks as most insurance don't cover it in a yearly physical. This last year I didn't pay a dime for it as my doctor coded me as a "high risk individual" for Lyme since Im outdoors alot and get probably 5 to 10 ticks on my minimum each year and my insurance covered the test.

They also apparently had a very successful Lyme vaccine in humans back in the early 2000s that got scrapped because people didn't get the vaccine after some anti vax rhetoric got going in the media. Sounds familiar, but I digress.

Point of the story, make it part of your yearly physical to get tested for Lyme so you can catch it early should you get it.
 
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