How Big of an Issue is Lyme Disease Today on the AT

[Lnj]

I have a question... about the ticks that carry Lyme (deer ticks only I presume?)... are they just out in the summer time or are they a year round issue? Same question for RMSF. Usually a good frost or two kills most summer bugs, but not so sure about these.

[Derf]

To hell with Lyme, how about Ehrlichiaabout half of the people who develop ehrlichiosis may not even remember being bitten by a tick. Yes that was me never even knew what hit me until I ended up in the hospital in Hagerstown, Md. being treated for overhydration and heatstroke. See the one nice thing about ehrlichiosis in adults there is no rash or even a sign like a bullseye from the tick bite that was my case. With a blood pressure of 80 over 40 the last thing on the ER doctor's mind was a tick bite as I showed no outward signs of being bit. So after 24 hours in the hospital and getting my blood pressure back up I was released from the hospital and got on a airplane to be checked out by my Dr. at the VA and boy was I glad I did she is the one that ordered the test for Ehrlichiosis and Lyme. The Lyme came back positive like most lyme test do so she ordered a western blot test which is the key test in finding out that you have Lyme well mine came back positive for Lyme. We still had to what on my ehrlichiosis test to come back as it is a total different test called IFA (indirect fluorescent antibody) test which takes two weeks or at least it did for the VA.

So from one tick or two different ticks I will never know I spent 28 days on doxycyclineand to this day I still have blood markers ofehrlichiosis in my blood and my doctor says I will most likely have them for the rest of my life. This all happened at the end of May and I still have chronic pain from it and learning to live with it oh well my problem.

The one thing that I learned is that you can ask many hikers and they will say they know someone that got lyme because there blood test says they did or the doctor says they have the symptoms of it so they give them doxycycline there is only one true test that will tell you that you have lyme. So unless someone tells me the name of that test I take it for granted that they were just being treated for lyme, This is very common on the east coast give them doxycycline and send them on there way and say you have lyme and good luck.

Tdoczi, I would also like to know how they get to a number of 300,000 is it from the first test which gives many false positives or is it the western blot test or a combination of both.

Anyway sorry about my rambling and as I prepare for my 2016 thru-hike I will be much better prepared for ANY tick bite and no I will not be carrying any doxycycline just long pants with permethrin soaked in.

[tdoczi]

I have a question... about the ticks that carry Lyme (deer ticks only I presume?)... are they just out in the summer time or are they a year round issue? Same question for RMSF. Usually a good frost or two kills most summer bugs, but not so sure about these.

rather than answer and risk being accused of doing something deceptive and dishonest again by doing so, i will just say you raise a very good, very relevant point and the answer to your question is readily found if you look for it.

[tdoczi]

The one thing that I learned is that you can ask many hikers and they will say they know someone that got lyme because there blood test says they did or the doctor says they have the symptoms of it so they give them doxycycline there is only one true test that will tell you that you have lyme. So unless someone tells me the name of that test I take it for granted that they were just being treated for lyme, This is very common on the east coast give them doxycycline and send them on there way and say you have lyme and good luck.

Tdoczi, I would also like to know how they get to a number of 300,000 is it from the first test which gives many false positives or is it the western blot test or a combination of both.

there is much wisdom in what you say here, and i am fairly sure the point you raise and the question you ask are very much related.

[tdoczi]

Tdoczi, I would also like to know how they get to a number of 300,000 is it from the first test which gives many false positives or is it the western blot test or a combination of both.

actually, i would think a positive test on EITHER would be reported in official hard statistics and not a matter of speculation and approximation.

[handlebar]

Unlike tdoczi, apparently, I have personal knowledge of Lyme disease since I contracted it somewhere in VA on the AT in 2006.

Should the OP be worried about it? No.

Should the OP be able to recognize the symptoms so that she/he can identify it if he/she should happen to contract it? Definitely YES!

About half the cases do NOT present with the typical rash. Rather, they have symptoms resembling the flu: mild fever, aches and pains, malaise, etc. That was my case: no bullseye rash, but the flu symptoms. The symptoms first appeared when I reached Lehigh Gap on my nobo thru. I felt abnormally tired. Since I traveled home for a wedding a few days later from Delaware Water Gap, I was able to see my personal physician without an appointment by showing up at his office when it opened at 7am. He was skeptical that my symptoms were Lyme, but gave me a prescription in case. Lyme was confirmed by blood test (which often notoriously leads to false negatives). My doctor left a voice mail on my cell phone confirming the diagnosis ("Good call on the Lyme", he said) and warning me to complete the entire course (21 days) of the doxycycline he prescribed which has cured the disease. Among the people I hiked with in 2006, I saw three cases of Lyme out of perhaps 75 hikers with whom I came in contact from VA north on the AT. That's a 4% incidence.

One of those cases, hitched out to a clinic in Massachusetts only to be seen by a Physician's Assistant who told the young lady it was "in her mind". That same evening, the woman had an obvious bullseye rash on her thigh and a high fever. She was evacuated by canoe and ambulance and treated. Hers is not an unusual situation as many physicians are not aware of the Lyme symptoms.

Failure to treat Lyme in its initial stage can lead to "advanced" Lyme with very serious consequences. The bacteria that causes Lyme (borellia burgdorferi) is a spirochete, the same family as the bacteria that causes syphilis, which also has very serious long-term consequences if initial symptoms are left untreated. You can check out this WebMD link for the symptoms that present during the stages of Lyme disease: http://www.webmd.com/arthritis/tc/st...topic-overview

What to do about the risk is an appropriate question? I believe it is prudent to treat socks, shoes, and gaiters with permethrin. I also treat my kilt and the Chopat knee braces I wear with permethrin. I do not wear long pants nor long-sleeve shirts as they would be far too hot for me. Second, one should do daily tick checks. This may require carrying a small mirror. Finally, be aware of the symptoms and seek treatment should they present.

[Moosling]

This is why its so important for Snakes to be on and around the trail or in the wild in general, Snakes tremendously help to control the rodent populations which are a main tick carrier.

[tdoczi]

Lyme was confirmed by blood test (which often notoriously leads to false negatives).

care to expand on this point? another poster has mentioned that a certain test frequently shows a false positive. i have heard of this, not just with lyme, but with other diseases. what sort of test are you referring to, and what is the supposed explanation for the high rate of false negatives?

presumptive diagnosis of disease, any disease, not just lyme, is something i always find interesting. when i had giardia i knew i had it. i so zero reason to take a test to prove what was obvious. on the other hand, a high fever and other such generic symptoms can be declared a "false negative" for pretty much anything. i would think (hope) there is a clinical definition for a false positive (perhaps bullseye rash observed after known and confirmed lyme bite, but test shows negative?) and would wonder if all of the false negatives and presumed diagnosis actually meet that standard or not.

[squeezebox]

The accuracy of medical tests is a very big issue. False negative and false positives both, can have consequences beyond the lawyers involved. Imagine getting lyme, syphilis, etc. and getting a neg test. What do you do when the much more serious symptoms show up years later? That's why there is so much "here take this just in case" happening. Yea the companies continue to work on the accuracy, particularly as the disease incidence increases it becomes more cost effective. Look at Aids testing as an example. If I were a Dr. I'ld give 100 people doxycycline before I missed 1 false neg test. Some people may consider that antibiotic abuse.
A person can make the argument that presumptive diagnosis is not really diagnosis, at least until you get it right.

[scatman]

Thanks everyone for your advice. I did not plan to get so many panties in a bunch. Like most I've been confused to the effects and curability of the disease and me asking my original question was to shed some light on the issue.

Should the fear of getting lyme disease stop me from a second AT thru-hike, NO. As a super active person I fear missing the symptoms and later in life paying for it. I have to weigh the risks of doing something I already did against doing others things I haven't, which I might do in the future.

Thanks again.

[squeezebox]

And you might consider getting tested when you get back from your trip, just because.
No reason to do the Lady McBeth thing.

[Connie]

3 million people riding in cars, walking on sidewalks (if that), and "couch potatoes" watching the tv.. while only some ride horses, pet the dog or cat that get outdoors in tall weeds, for example, or they actually get outdoors to cut the lawn, rake leaves.. their children play on school playgrounds or groomed sports fields, or, not at all.

Hikers hike on not always groomed trails, in fact, hikers traverse tall grass, push thru overhanging branches and overgrown brush, sit on the ground, lay down on the ground (frequently, not on a ground cloth or tarp or tent) and pet wild ponies or pick up stuff they find on the ground.

How many of 3 million do that?

..and if you are the one that gets tick-borne disease, how about your pseudo-knowledge of statistical samples and statistics, then?

In fact, your "attitude" is quite prevalent recently, and, is the reason I no longer do rescue-work.. an "attitude-adjustment" is indicated, not rescue, when I see a walking "Darwin award" who seems convinced you are not one of the sniveling and fearful idiots that use reasonable precautions.

[tdoczi]

..and if you are the one that gets tick-borne disease, how about your pseudo-knowledge of statistical samples and statistics, then?

In fact, your "attitude" is quite prevalent recently, and, is the reason I no longer do rescue-work.. an "attitude-adjustment" is indicated, not rescue, when I see a walking "Darwin award" who seems convinced you are not one of the sniveling and fearful idiots that use reasonable precautions.

if i get lyme disease? i will chalk it up to bad luck and much like i did with giardia, i will get it treated and go back to what i was doing. no biggie.

i'm not sure what attitude you're referring to. you seem to almost be comparing me to people who recklessly get lost because of their own carelessness and need to be rescued as a result. if so, my response to that is something not fit to say in public.

[Don H]

if i get lyme disease? i will chalk it up to bad luck and much like i did with giardia, i will get it treated and go back to what i was doing. no biggie.

It might not be that easy, some people seem to never get over it even with aggressive treatment.

[tdoczi]

It might not be that easy, some people seem to never get over it even with aggressive treatment.

you are correct, of course. unlike how some people have tried to paint what ive been saying, i dont "deny" any of this, just question whether it is really something to get all that worried about.

so to take the hypothetical someone posed further- what if i get lyme disease and am one of the people for whom it never seems to go away... ok, so sucks to be me then, and the point is...???

i'm not operating from a point of uninformed ignorance and not advising anyone to do so. i have knowledge and i use it to make up my own mind. that the conclusion ive reached for myself seems offensive to some people is really quite the curiosity. or maybe im just not supposed to share it because someone else might decide to agree with me?

[MuddyWaters]

you are correct, of course. unlike how some people have tried to paint what ive been saying, i dont "deny" any of this, just question whether it is really something to get all that worried about.

so to take the hypothetical someone posed further- what if i get lyme disease and am one of the people for whom it never seems to go away... ok, so sucks to be me then, and the point is...???

i'm not operating from a point of uninformed ignorance and not advising anyone to do so. i have knowledge and i use it to make up my own mind. that the conclusion ive reached for myself seems offensive to some people is really quite the curiosity. or maybe im just not supposed to share it because someone else might dec)ide to agree with me?

When your only other option is to stay home, you just go , be prudent, and deal with it if it happens. Thats all anyone can do. Its all anyone does.

[Connie]

..share?

It is just that you haven't been expressing an opinion.

You have been aggressively expounding an argument, a specious argument, because you refuse how statistics works: statistical samples and relevant statistical means, including standards of how to "do" statistics.

If it is your "choice" why try to impose it on others with specious arguments?

We live in a world of risks.

Everyone makes up their own mind.

[tdoczi]

..share?

It is just that you haven't been expressing an opinion.

You have been aggressively expounding an argument, a specious argument, because you refuse how statistics works: statistical samples and relevant statistical means, including standards of how to "do" statistics.

If it is your "choice" why try to impose it on others with specious arguments?

you need to review this thread i think. it went something like this-

OP- is lyme disease a real concern or is trumped up and exaggerated?

me- trumped up and exaggerated. i dont worry about it.

everyone else- what!?!?!?! are you crazy!?!?!? thats nonsense!!!!! how can you say such a thing!?!?!?!?

me- well here, let me tell you...

have i told anyone what to do? have i tried to convince anyone not to take precautions? no, you want to walk around in long pants and sleeves in august thats all you. but as much as you dont like me trying to convince others not to do it, i dont particularly like others trying to convince people to do it.

moving beyond that, to a more serious extension of this (that you question if it exists, but it does, people on this very board have said they do it, though thankfully, not many) if a hiker is walking around with a prescription antibiotic and starts taking it because he/she has been bitten by a tick, sorry, that person is acting foolishly and selfishly and is, frankly, dangerous. another thing hikers get is MRSA. do you know why MRSA exists and is the concern that it is?

[canoe]

Agree with muddy... Is lyme something to be concerned about while on the trail? YES So much so to keep anyone off the trail? NO

[squeezebox]

If a hiker were to start taking Doxy just because of a tick bite and nothing else they would be acting foolishly. I also agree with Muddy.