For the Chronic Lyme, or Long Term Sufferers...

I'm sorry if this has been discussed but it's a tough search.

Obviously this question is not for those who had a tick bite, bulls-eye rash and all of the typical immediate presentations. This is for those who have been dealing with this illness (and/or related tick-borne illness) for a long time and/or were recently diagnosed after a long time of suffering (long = more than about one year?)

How do you determine exactly when you became infected? Especially if you live in an endemic area and have had a life-time of exposure to ticks, but never really got the classic symptoms. Is there any science behind this or another clear way to determine this? Are LLMD's able to estimate this based on history? For example, I've had almost a lifetime of exposure to ticks living in NJ pinelands. I've been bitten many times where I live.

But I've also lived in several areas of the US where I could have been bitten because of the type of work/activities I was engaged in.

What is clear to me, I know for sure I was bit by at least two deer tick nymphs one spring (pulled them off), and about two months later (July-Aug) had a day of mild flu-like symptoms. Seems like that's when my memories come together and the 3 year timeline to today began based on the later onset of mystery, multi-system problems. Though, it's possible it could have been any time before or after this.

Another example, in 1999 I spent two months tent camping in the Colorado Rocky Mountains, sleeping, eating, working, hiking, and of course eliminating, in the woods. I don't recall ever finding a tick, and can't think of having any related symptoms then, but I also didn't know anything at all. I do know that several years after that year I developed depression, Adult ADHD and anxiety, which I had never had growing up. For several years after that, my life took a downturn, I quit school, etc. but physically I had no memorable issues.

Not really trying to make this about me, but I'm more interested in how, or what tools people have used to establish a time-line and determine the duration of infection, especially if it's been a recent diagnosis of a long term infection. I guess symptoms play a role, but once you've reached late stage, how do you know if you've been there for 3 years or 30?

I have been here 12 months.
I know when I got bit: twice. I did not feel this way prior to that. I did not have a dog and I did not pick ticks from her fur.
When I begun dealing with ticks I also heightened the exposure and risk of being infected.
I got bit once and did not get treated. I got bit the second time and got treated.

Which bite caused me this? Possibly the first which was only a tick just beginning to suck blood.
Did smashing ticks with my fingernails caused bleb shedding and infection as well? Could be...if I forgot to wash my hands.

I do not believe that people have to be bitten to get contaminated with lyme. According to lyme literature (not CDC) lyme is contagious sexually and via saliva, thus to me seems that you could live in the Arctic and have a sexual contact with an infected and become infected yourself.

This is why there are people infected with a European strain that have never been to Europe. Unless the tick has travelled from a bird. Far fetched theory IMO.... most ticks stay on.

My understanding is that once you have been infected for a month you are already near stage 3 lyme.

Also I would like to add that after a bite that cause you no symptoms you might get infected in any other way (including sexually) with a strain of BB that your body cannot handle.
Whether the sexual or the saliva transmission take the same route of infection ....who knows?? not enough research in this area.

I am pretty much in the same boat Girlie is. I was able to draw a timeline of symptoms though and that is when I figured out that it had to be the first tick bite. I still recall texting my friend and saying "I found this tiny tick on me, just beginning to dig. I removed it. Do you think I should go to the ER?" .....he relied "you should!"....and I said......"but I feel stupid doing so, it has to be attached for 24 hrs!!".......

When I was bit by the second tick I got treated asap...and the doxcy gave me a MASSIVE herx. That was because I was already infected!!

Here we are....

I was "attacked" by seed ticks once - they were so small that it looked like someone had sprinkled black pepper on my legs when they were wet - only they moved and when I used a magnifying glass, I could see their tiny little legs!

Use duck tape!! Tear off a piece long enough to wrap around your hand, only put the sticky side out - and then start patting your skin where the seed ticks are.

Yep, I used it for fleas too! I walked into and then stood in a nest of them one time! But fleas move a little faster than ticks do!

Unfortunately very few states have implemented a tick control program which would greatly reduce the tick population and infection. Sadly they still do not feel that lyme disease is a problem. Of course so much money is spent on stupid rabies propaganda.....

Julymonrning and Traveler

I thought that seed ticks only carry RMSF and Tularemia?
Do they also carry lyme.
ICK

As I understood, seed ticks are larval form of dog ticks.. Are dog ticks carrying lyme now too? H-E-L-P!!!!!!!!
Seriously, I am going to cry.

(I have been trying to think of a place to go where there are no ticks but I doubt I would pass the physical for the space station.!!)

I never knew as many ticks as since I move to the US. North East.
With that huge amount of diseases......

I am getting so worked up reading this. This disease is ridiculous - making people figure out what they have on their own and then having to pay for treatment and testing ( that is iffy at best) It is so sad that being validated brings us to our knees.

I am hoping some day soon that we can just get cared for and cured.....

njfillet said...
I'm sorry if this has been discussed but it's a tough search.

Obviously this question is not for those who had a tick bite, bulls-eye rash and all of the typical immediate presentations.

This is the burning question, in more ways than one.

..........Here I go on a "health care" rant again:

Wish I could go back 25 yrs ago and force that one Dr to give me whatever lyme test they had back then, several times and weeks apart. I asked and was refused, this was quite confusing and my first real need of medical help, and was brushed aside. Was an avid young outdoors-man, many ticks (no surprise), presented rash and symptoms at Dr Appt., and was told Lyme was only in the US NE, not in great lakes region. (It was all over the great lakes states, newspapers reported it to). Symptom after symptoms the following years, with some better years in between, all baffling newly encountered Drs. I was lucky enough to function, but obviously functioned with a handicap. Looking back, I have to say, the fact that I was a young and stubborn athlete trying to achieve childhood dreams (partially did), helped immensely in the "functioning" department.

With my then crummy HMO insurance, one Dr held the keys to my future heath, and threw it all away! Gee, thanks for that. Who ever thought one Dr should hold the keys to any other referrals should be jailed. But it saved them money.

She also misdiagnosed another family member who later died (not of lyme, but a major misdiagnosis). Those were my first and second life lessons on NOT to assume somebody with a higher "educated social status" (Dr) is smarter than you are.

Pardon my rant, had to just in case some Dr reads this someday. People suffering with anal-cranium inversion, should not be Drs., do something else for a living.

This whole lyme disease thing has come a long way since, but,.... well....actually it hasn't , has it?

carry on............errrrr...........

Not to mention, its cost me about 100-150K lost in potential earnings over the years, it can effect anyone's career abilities.. Under employing yourself is a pathetic feeling. At least I could work, just not as I intended.

Post Edited (astroman) : 9/27/2016 8:24:02 PM (GMT-6)

If we're going to be stringing up (in a manner of speaking) so called Medical Doctors for ruining our lives, I have one associated with the University of Missouri Hospitals in Columbia that will be first in my queue.
This...person...was a referral from my ole' country GP who said he didn't know how to interpret my Lyme test he had drawn on me.

The 'smart' one told me the test showed three bands positive for Lyme, but it was false positives, there was no Lyme in Missouri.

I came close to slapping his face when he said it could syph. I hadn't been anywhere near anyone for 11 years by then.

I had already been infected for 7-8 years but had just had a big relapse.

If anyone had admitted I had Lyme, or RMSF back then, I would have gotten my daughter tested. She'd had odd physical and mental problems at various stages of HER life. Now she is unable to work and suffers almost daily. She's had knee surgery, most of her teeth pulled, can't keep weight on,...etc.
Her Dr. refuses to test her with Igenex, he used to common one, said she was negative and won't retest her at all now.

That is terrible - what an *&*#$%# her Dr. is julymorning. So sorry for you and your daughter.