Lyme Disease and herping questions (feedback wanted)

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ahockenberry
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Lyme Disease and herping questions (feedback wanted)

Post by ahockenberry » April 27th, 2011, 7:51 am

Hi folks

I have been noticing an increased incidence in Lyme Disease in the Eastern US and also in places like Wisconsin and California...

See chart:
http://www.cdc.gov/ncidod/dvbid/lyme/ld ... yState.htm

I live in Ontario and Lyme Disease has been established in several areas here but making progress.
In states like NJ, PA, NY, CT, and MASS, there are thousands of new cases per year.

My questions are as follows:

1 - Have you changed your habits while out herping to protect yourself?
2 - Have you noticed an increase in ticks while out herping?
3 - Have you contracted Lyme yourself or know someone who has?
4 - Have you had success with Permethrin or DEET and with wearing long pants/hats/other coverings?

My concern is this - I would like to go back into central Pennsylvania and other areas of the northeast for herping but I am really hesitant because so many people are contracting it from what I am reading..

1 - Many people contract the disease without even knowing they have been bitten or ever seeing a tick
2 - Then there are situations where people have the disease for years without realizing that they have it or a proper diagnosis
3 - There are the standard precautions which can be taken - but ticks can and do stay on you and can get into your car, clothes, house, etc.
4 - Once you contract the disease- it is really life altering

Anyway, looking for feedback - maybe I am too paranoid - and I have also spoken to people who have had the disease numerous times and have been treated numerous times and they take it all in stride!

Or have you stayed on trails, avoided tall grass?

The bottom line is that there are so mnay states now where this is an issue - even the Smoky Mountains - so any feedback and experience would be appreciated.

Thanks

Ashley Hockenberry

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Re: Lyme Disease and herping questions (feedback wanted)

Post by Bold Cub » April 27th, 2011, 8:03 am

Had it, got some meds, got rid of it. I felt shitty for 2 or 3 days, then it was as if it never happened. I haven't really had much success with DEET for ticks, plus I'd rather not handle animals with that stuff on me, especially amphibians. Mostly, I just check myself pretty thoroughly every 30 minutes or so. Clothing, sometimes I'll suit up, other times I go as is. I take my dog with me a lot and she got it a few years ago, we hadn't frontlined her yet as it was early March and I wasn't aware at the time that ticks are active YEAR ROUND. Stupid ticks. She is fully recovered as well. I do have a friend who got it years ago and didn't get diagnosed in time to get rid of it. He isn't the same anymore, became reclusive and depressed, and has a lot of pain. Lyme disease sucks, if you even SUSPECT you have it, get checked right away. I miss my Lyme diseased buddy, haven't seen him in years.

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Re: Lyme Disease and herping questions (feedback wanted)

Post by Jeremiah_Easter » April 27th, 2011, 9:26 am

My understanding is that Lyme Disease is really difficult to accurately diagnose. I am curious if the increased cases is an increase in diagnosis occurrence, or an actual increase in Lyme disease. Great Topic.

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Re: Lyme Disease and herping questions (feedback wanted)

Post by ahockenberry » April 27th, 2011, 9:52 am

Guys
Thanks for your replies -
Jeremiah - excellent point !

Yes, there is more awareness and more diagnosis happening but stll alot of ignorance among many folks out there.
Also, there are increasing numbers of subdivisions being built into areas backing onto forests with deer coming into people's back yards and the like - so you don't have to go very far to 'catch' Lyme.

There is also a medical/political aspect to this as it can be very expensive to treat and I think a lot of insurance companies do not want to touch an Advance Lyme Disease case - as the costs can really mount up.

But those of us who enjoy herping and go out into the field dozens of times per season are definitely at higher risk.

Also, those at high risk are golfers, (especially if they cannot keep the ball on the fairway) hikers, campers and all other outdoor enthusiats

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Re: Lyme Disease and herping questions (feedback wanted)

Post by will lattea » April 27th, 2011, 10:03 am

My short response is just go herp.

I'm out in MD/ PA all the time and generally pull a couple deer ticks off me every time I go out. Some places are worse than others. I've heard smaller forests, particularly those less than 3 acres are particularly high in concentration, and you generally just want to stay away from tall grass fields and forest edges.

That being said, the number one thing I do is a (naked) mirror check when I get home. Ticks especially like the dark sweaty areas on your body so the best thing you can do is actively look for them. Now-a-days when I have an itch, I check and make sure it's not a tick crawling on me- even a day or two after being out.

There's a big difference between having a tick on you and having a tick bite and hold on for a few days. It's generally believed that the spirochetes take 2 or 3 days to get in your system. Basically, that means it takes 2 or 3 days of a tick being attached for the flow of bacteria to make it's way from the tick to your blood stream while it's sucking your blood. Most people decide to go get checked for lyme when they have a bite, but the test will always be inconclusive if it's not positive- it can easily take a month before you have enough in your system to come up positive. When the doc gives you meds (probably doxycycline) make sure to take them all, and then get re-checked again. The worst case senarios you hear about are those that don't finish the meds, or don't get checked again, and end up with a tougher strain of lyme (all the stuff that survived the initial meds) which can become chronic. If you get it, make 100% sure you get rid of it and you'll be fine. But if you're checking yourself daily you shouldn't get it. My doctor is city folk and pretty much insists I get tested more frequently than I'd like as well... which probably isn't a bad idea if you're regularly exposed and have insurance or can cover the $.

Oh... shorter hair is WAY easier to check too.

-Will

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Re: Lyme Disease and herping questions (feedback wanted)

Post by jason folt » April 27th, 2011, 10:16 am

As a physican and a herper second, I don't lose too much sleep over Lyme disease. All of us should routinely perform thorough tick checks when we get back from the field. The ticks need to embedded for a number of hours (12-24+) for transmission to occur. If you catch them early there should really not be anything to worry about.

Lyme disease is easy and very cheap to treat in the initial stages. I would hope herpers area a little more aware of their risk of lyme from tick exposures and are willing to seek medical care early. Lyme can be hard to diagnosis because it is sometimes hard to elicit the key pieces of history. Most herpers would come in and hopefully say something to the effect "I spend a lot of time hiking and pull ticks off myself frequently." It really should be a no brainer in that case, especially in lyme endemic areas.

Jason

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Re: Lyme Disease and herping questions (feedback wanted)

Post by Blue Smaggie » April 29th, 2011, 4:52 am

In Germany Lyme disease is a problem, too. I know several people who got successfully treated. I'm more afraid of TBE, though - and actually I have to check if I need to refresh my vaccination.

Usually I use something called Autan on my clothes and my skin; it is a tick and mosquito repellent. But you should clean your hands after using it, because it is something that should not get in contact with amphibian skin.
Autan works ok, but some ticks will still be on your clothes. When I realize that I've moved through higher grass close to forests, in forests or any other area that is often frequented by deer and wild boars, I'll check my clothes quite often and wear light pants and shirts to detect ticks early. I also put my socks over my pants which helps a lot. At home I check myself and check clothes again before washing them. If possible I try to stay on paths and avoid tick infested places.
During the last couple of years only one tick managed to sting me in 2009; I actually kept that one and it is now used by students to have a look at it under the scanning electron microscope. :mrgreen: So it is at least of some use and nice to look at.
I actually wanted to get it tested for Lyme disease pathogens, but just kept it after I heard that the tests were not 100% accurate. I'm still ok.

I can understand that ticks cause some sort of paranoia. I really hate them.

Sandra

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Re: Lyme Disease and herping questions (feedback wanted)

Post by DaneConley » April 29th, 2011, 5:36 am

I heard that if you pull them off by hand that you may squeeze the disease into you? This true?
Also I heard that wood ticks, deer ticks, and Lonestar ticks can transmit the disease...is that true?
I usually get 2 ticks everytime I go in the woods....But have like 456023854734852384 crawling on my legs but I flick them off...

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Re: Lyme Disease and herping questions (feedback wanted)

Post by Blue Smaggie » April 29th, 2011, 7:27 am

I learned to grab them with tweezers as close to the skin as possible and avoid squeezing their body. Lyme pathogens are in a ticks intestine, so I don't really know how fast they might get squeezed out if you remove the tick with your fingers. Maybe someone else knows better.

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Re: Lyme Disease and herping questions (feedback wanted)

Post by Zach Cava » April 29th, 2011, 9:01 am

I am from just outside of Philadelphia and have had Lyme twice in the past, and possibly a third time now. The first time doxycycline took care of it no problem, the 2nd time I had a more systemic infection, and required IV antibiotics (ceftriaxone) for a month, and I was still left with lingering symptoms. That was five years ago, and now I am on IV antibiotics yet again, this case seems to be the worst yet. Everyone concerned or interested in Lyme should see the documentary "Under Our Skin." Even if you get treatment right away, as I did, you can STILL have long-term symptoms. Furthermore, you can get lyme more than once, at which time it becomes almost impossible to accurately diagnose as people often have antibodies for it their whole lives, so there's no way to see if you have a recent infection or not. And don't expect doctors to take you seriously. Feel free to PM me with any further questions

-Zach

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Re: Lyme Disease and herping questions (feedback wanted)

Post by KingCam » April 29th, 2011, 9:23 am

Zach Cava wrote:I am from just outside of Philadelphia and have had Lyme twice in the past, and possibly a third time now. The first time doxycycline took care of it no problem, the 2nd time I had a more systemic infection, and required IV antibiotics (ceftriaxone) for a month, and I was still left with lingering symptoms. That was five years ago, and now I am on IV antibiotics yet again, this case seems to be the worst yet. Everyone concerned or interested in Lyme should see the documentary "Under Our Skin." Even if you get treatment right away, as I did, you can STILL have long-term symptoms. Furthermore, you can get lyme more than once, at which time it becomes almost impossible to accurately diagnose as people often have antibodies for it their whole lives, so there's no way to see if you have a recent infection or not. And don't expect doctors to take you seriously. Feel free to PM me with any further questions

-Zach
Yep. It's decided. I'm going to be treating my field clothes with Permethrin from this point forward. Not interested in going through something like that. I'm sorry to hear about your Lyme Disease complications :(

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Re: Lyme Disease and herping questions (feedback wanted)

Post by troy hibbitts » April 29th, 2011, 3:20 pm

I herp in Lyme Disease areas and don't worry much about it. I get so inflamed from tick bites that they DO NOT go unnoticed long enough for them to spread Lyme's. I also don't know of anyone that goes into the field regularly (and that's most folks I know well) who has gotten Lymes.

Troy Hibbitts
Brackettville, TX

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Re: Lyme Disease and herping questions (feedback wanted)

Post by dthor68 » April 29th, 2011, 4:39 pm

I got it in South Carolina. 1990, camping trip on Edisto River, Aiken Co. Got home found bulls eye rash with tiny tick in center during shower on back of my leg. My dad and I looked up lyme, it matched. However, it only occurs in New England states. I let it go, it went away. 4 months later had worst flu of my life. But, so did my sister and her boyfriend. After flu passed had enlarged lymph nodes in groin. Doc said I had cat scratch fever (Bartonella). Took zpack, did not go away, but felt real good. Let it go again. Years roll on and i am getting 6-8 24 hour flus a year. Feel real tired all the time and have this awful pain in legs 24/7. On June 23, 2003 got sick with bad flu. I had over 40 symptoms, the worst was dizziness, pain and vision. I am 42 years old and have not worked since that day. I can say, every Dr. I saw believed what I said, the test proved it. I did see a lyme disease dr. in Charlotte NC. I spent 6 months on IV abx., and 6 months on oral abx. I did not trust this dr. Others did not trust him either, he lost his NC license and moved his practice to Rock Hill SC. The Dr. I trusted most said that I did get lyme and I developed fibromyalgia in relation to lyme. The years of pain (fibromyalgia) disturbed my sleep. The years of disturbed sleep caused something called Chronic Fatigue Syndrome. Don't let the name fool you, with cfs you do little sleeping. I could write a 500 page book on the last 10 years of my life. However, dont much like talking about it. I will say this, nothing bothers me anymore. I am not about to let it keep me out of swamps. I can not use deet anymore. It causes intense burning pain that last for hours, this too due to fibro. Just be smart, check yourself for ticks. Look real close for the tiny ones too. If you have a bulls eye rash around an embedded tick, see a doc. If he says seven days of doxy, you say 21! I have no doubt in my mind, had I saw a doc in 90 then I would still be working today.

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Re: Lyme Disease and herping questions (feedback wanted)

Post by dthor68 » April 29th, 2011, 5:13 pm

1 - Many people contract the disease without even knowing they have been bitten or ever seeing a tick.

This is a problem. Not enough info on lyme and no reliable test. If you see a dr. that specializes in lyme, he/she is going to say that you have lyme. Chances are there will be a bulls eye rash. The bulls eye rash may occur 100% of time but due to the testing there is no one that can prove or disprove this. I was out in the swamps for 4 days without a shower. that tick may have latched onto me 4 hours after we got there.

2 - Then there are situations where people have the disease for years without realizing that they have it or a proper diagnosis.

Here again same as above. They can not prove that anyone even has lyme. I dont even consider myself as a lyme survivor. I am a CFS/fybro survivor. A year of seeing a lyme dr and antibiotics did absolutely nothing to help me feel better. I did not start feeling better untill I started taking an old drug called amitriptylene. I was on hundreds of drugs and this cheap drug is what helped me! Then they added prozac and I was back on my feet and back in the woods.

3 - There are the standard precautions which can be taken - but ticks can and do stay on you and can get into your car, clothes, house, etc.

That is unnecassary worrying. Do what you can to protect yourself.

4 - Once you contract the disease- it is really life altering.

For me it was! Had I done the right thing when I saw the bullseye rash it would have only altered a week of my life.

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Re: Lyme Disease and herping questions (feedback wanted)

Post by ahockenberry » May 2nd, 2011, 7:55 am

A BIG THANK YOU to all who responded !!
That is what this forum is all about - helping each other and learning from one another's experiences.
Thanks for sharing your personal stories and information

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Re: Lyme Disease and herping questions (feedback wanted)

Post by cbernz » May 2nd, 2011, 8:59 am

Some of the stories in this thread are really scary, and I feel terrible for anyone who had to go through years of this disease. I got Lyme last summer in the Pine Barrens of NJ. The first thing I noticed was a tender spot on my back that hurt when I accidentally scratched it. Stupidly, I never bothered to try to look at it until my wife noticed it a day or two later. The tick was long gone, but luckily, the bulls-eye rash was so classic the diagnosis was a no-brainer. I saw a dermatologist who had experience with the erythema migrans rash, and he was great. I only had to suffer a couple days of moderate fever, night sweats, and general malaise. 3 weeks of potent anti-biotics took care of it, and later blood tests confirmed I was fine.

I don't think you need to be super paranoid about Lyme disease, but neither should you be too cavalier about it. My biggest mistake was walking through an area where I was VISIBLY seeing ticks and not having my wife check me thoroughly when I got back. If I had done that, the tick would have been found within 8 or 10 hours of when I first picked it up, and if everything I have read about the time it takes to contract the parasite is true, I probably would not have gotten sick. As it was, the tick chose the one place I couldn't see myself and might miss even if looking in a mirror. I would compare Lyme disease to skin cancer. You probably wouldn't avoid going to Arizona because you are afraid of skin cancer, but you would probably take lots of precautions against sun damage, and maybe get a regular skin checkup to be safe. There would also still be a slight chance that you get sick despite all your precautions, as there is with most illnesses.

Here's the best way to think about it. The vast majority of Lyme sufferers are not herpers out in the woods, they are average people who get it in their backyard or neighborhood doing normal activities, so avoiding the woods is not really a solid prevention. Getting used to scrupulously checking your skin, preferably with another pair of eyes, IS a good prevention.

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Re: Lyme Disease and herping questions (feedback wanted)

Post by chrisr » May 2nd, 2011, 12:19 pm

Great thread. I have contracted Lyme disease twice up here in MA. I have been out in the woods 3 times over the past week and have a total of 4 ticks; 2 each day. One I did not find until I did a thorough inspection and found it attached to my armpit. Gross.

The last time I had Lyme I had the worst headache of my life and my primary car doctor said to got to the emergency room. I was sitting there barely able to hold my head up at the hospital when I reached down and felt something on my upper thigh/lower buttock. I look down and there is a bull'seye. Like people have already said, I will always test positive for Lyme but the bull's eye was a giveaway. Turned out my headache was caused by my swollen brain! This last bout occurred about 5 years ago and I have been out in the field a fair amount and continued to find ticks on my person. I really hope to avoid getting Lyme again. Lately I have been tucking my pants into my socks and shirt into pants but I still got that one nasty attached to my armpit nonetheless.

I'm wondering if anyone else has prevention techniques?

- C

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Re: Lyme Disease and herping questions (feedback wanted)

Post by millside » May 2nd, 2011, 7:15 pm

for those of you taking Lyme disease lightly, you are crazy
Lymes is a crippling disease, up here in the northeast I say it is near epidemic.
for a great info movie ,watch "Under your skin"
The problem with Lymes is that there are also 7 other piggy back infections to the lymes, each one needing its own set of antibiotics.
forget just herping with lymes, my family uses caution every single day,just being in the yard,
the kids get tick checks every single night, head to toe, double checked.
I just know to many people with the disease and it is horrible to watch.
again I repeat, DO NOT UNDERESTIMATE LYMES DISEASE, it is bad stuff.

if anyone cares to disagree with me, I will pull out my info and debate you on it.

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Re: Lyme Disease and herping questions (feedback wanted)

Post by VICtort » May 2nd, 2011, 7:49 pm

Lyme's disease is frightening, and I have 3 personal friends who have contracted it. One of them has horrid neurological damage, they misdiagnosed it repeatedly, tested her for pregnancy a dozen times...and the disease really trashed her long term with a disfavorable and depressing prognosis., she says it ruined her life... Another was one of the strongest and toughest guys I know, but it darn near killed him. The other caught it early... after middiagnosing himself with M.S....he was relieved it was "only Lyme's"...he fully recovered. None of these 3 saw the tick that exposed them, apparently early nymph form is really tiny and readily overlooked.

I have been exposed to ticks a great many times, and I have had 50 at a time crawling on me, they are very abundant in Northern California damp coastal areas. I am lucky to not have it, and I try to check myself whenever I feel something strange on my body, no longer ignoring such irritants. I sometimes duct tape my ankles, eliminate the up your leg inside the pants route...I do use OFF and at times DEET. I try to avoid infested areas, and I sometimes turn back... Despite dozens of tick exposures, I do not have (?) Lymes's, so one can still have fun in the wild lands, but precaution is indicated.

The major key seems to be early detection. Beware many persons and also Physicians will misdiagnose or fail to recognize it, it is so similar to many other maladies including ageing or being out of shape and sore after a long hike. Be safe and avoid ticks...Vic I innoculate my dog.

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Re: Lyme Disease and herping questions (feedback wanted)

Post by Fundad » May 3rd, 2011, 5:53 am

As Far as DEET working it does, but you need 80 to 100 percent not the 15-25 percent stuff you see in the stores(ticks seem to laugh at that lower percentage stuff)..

Military Grade stuff..


Fundad

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Re: Lyme Disease and herping questions (feedback wanted)

Post by Nature Nate » May 3rd, 2011, 7:50 am

I think I read through this thread pretty thoroughly and I'm surprised that nothing has been said about the inverse occurrence between Sceloporus and Lyme disease. I haven't read the official paper on the matter but if I am correct any region with a high density of fence lizards has no Lyme disease. It's something about the blood of the lizards that kills the disease right?

I just want to make sure because all this talk about a life debilitating disease has given me a healthy fear of ticks that I never had before.

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Re: Lyme Disease and herping questions (feedback wanted)

Post by muskiemagnet » May 3rd, 2011, 10:41 am

yes, tall grass should be avoided as best as one can. STAY OFF THE DEER TRAILS! seriously. it's easy to gravitate to them. make this a habit.

i was out one day at the height of tick season, and i had to stop and remove a bunch. as a side note, wearing shorts might be the best idea. you can scan your legs occasionally and remove them. anyhow, i realized i was utilizing a deer trail. i cleaned my legs and walked equal paces on the trail and off the trail (through tall grass). it was like fifteen to one. i even got on my hands and knees and you could see all the ticks waiting on the ends of the grass. they can smell the deer. that's why deer trails should be avoided.

i also don't like to use any chemicals. i don't want to transfer it on to an amphibian.

-ben

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Re: Lyme Disease and herping questions (feedback wanted)

Post by Zach Cava » May 3rd, 2011, 2:24 pm

Another thing I would like to add - for anyone who has had Lyme in the past, avoid taking any medication that lowers your immune system at all costs. Even when treated, Lyme can go into remission and "reactivate" if conditions change (i.e. immune function is compromised). Last year I made the mistake of taking prednisone after a bad poison ivy reaction, and I believe this might have reactivated my previous Lyme infection.

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Re: Lyme Disease and herping questions (feedback wanted)

Post by jimoo742 » May 3rd, 2011, 2:55 pm

I've had lyme. I've noticed more ticks over the last ten years, but all I've seen are wood ticks. Mine was fairly easy to diagnose as the bullseyes were prominent. I haven't changed anything as far as actions go.

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Re: Lyme Disease and herping questions (feedback wanted)

Post by jimoo742 » May 3rd, 2011, 2:58 pm

Oh, mine was picket up in MA.

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Re: Lyme Disease and herping questions (feedback wanted)

Post by RenoBart » May 3rd, 2011, 3:19 pm

I was out in Sonoma Co yesterday, hiked around in tall grass for about 6 hours, later that day, while driving, ticks were crawling all over. Probably they were on my pants, but I showered and checked where the sun don't shine and I was tick free.

Anyway, reason I'm saying this, because I have herped this area before will little to no tick exposure, but this time there was a lot. Maybe because of the rain this year.

Bart

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Re: Lyme Disease and herping questions (feedback wanted)

Post by cbernz » May 3rd, 2011, 4:28 pm

Nature Nate wrote:I think I read through this thread pretty thoroughly and I'm surprised that nothing has been said about the inverse occurrence between Sceloporus and Lyme disease. I haven't read the official paper on the matter but if I am correct any region with a high density of fence lizards has no Lyme disease. It's something about the blood of the lizards that kills the disease right?

I just want to make sure because all this talk about a life debilitating disease has given me a healthy fear of ticks that I never had before.
I am no scientist, but the only way that makes any sense at all is if it is an area with fence lizards AND no deer. Doesn't the parasite itself come from rodents, and then get transferred to the deer by the same ticks that then bite us? I don't see what lizards have to do with it. Anyhow, my tick came from the Pine Barrens. Fence lizards are possibly the most abundant herp there.

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Re: Lyme Disease and herping questions (feedback wanted)

Post by joeysgreen » May 3rd, 2011, 7:28 pm

The fence lizards are an intermediate host for the ticks. This study was done in the Southwest; I've onlyi read the summary so I don't know more specific locations, but it is not to far of a stretch to think there are other intermediate hosts in other areas of the country.

Nevertheless the disturbuing part is that the experiment was actually looking for benefits of erradicating the lizards as a method of controling Lyme disease.! Unfortunately, as predicted, in areas where lizard populations were removed, Lyme disease incidents dropped significantly. I sure hope some person in power doesn't take this information and begin a war on lizards.

On Lyme disease specifically, you can vaccinate your dog against it. If they have a vaccine for dogs, I"m rather positive that they have one for humans. So if you're worried, contact your doctor for preventative measures. Certainly there is no need to be killiing lizards!

Ian

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Re: Lyme Disease and herping questions (feedback wanted)

Post by Notread » May 3rd, 2011, 8:41 pm

Chronic lyme here... Still fighting it after 1.5 or 2 years give or take. I don't have time to read all the replies and respond fully, but let me just say this:

Make no mistakes about it,

LYME HAS DESTROYED ME AND THE LIFE I ONCE HAD.

I'm getting by; i am alive. Thats about all I can muster up to say about it tonight.

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Re: Lyme Disease and herping questions (feedback wanted)

Post by Notread » May 4th, 2011, 7:40 am

1. Habits: I had pretty good tick control to begin with, but since getting sick I check
myself a whole lot better.

2. Not really. There maybe some increase some years and other years a decrease in tick activity. I haven't really been able to establish a pattern.

3. Yes. I am fighting chronic lyme right now. I'll tell my personal story later. My father was the one of, if not the first Lyme case in NJ. After years of misdiagnosis he was paralyzed and couldn't talk. We had a live-in nurse. It was a horrible time. When a new doctor treated him for Lyme he got much better and functional again, but much of the neurological damage is permanent. Many of my friends have Lyme. My boss is fighting a rough strain right now. Many people in the Northeast chapter have had Lyme. Most people in the NE chapter are likely to get Lyme if they haven't already (opinion).

4. 100% deet reduces the ticks I pick up, but I tend not to use it when herping unless I feel I have no choice. I rather not kill amphibians on contact. I often keep my pants tucked in to my boots, but make no mistakes, they will find their way in anyway. Best bet is to just check really well as soon as possible and keep flicking them off as you see them climbing you.


Regarding your concerns:
1. Yes, many people do get sick and never see the tick. Some never get a bullseye. Some have been infected for years before symptoms emerge. Some get sick right away. If you had a bullseye, you have Lyme.

2. Oops, covered this a bit above. Yes, some people don't know they are sick. It seems Lyme can stay dormant for long periods of time. More about that in my personal story in another post. Diagnosis is problematic. The medical community is split on the diagnosis of chronic Lyme. The CDC claims that doxycycline is enough to kill a Lyme infection and no further course of treatment is needed. Doctors that follow that, will continue to misdiagnose you or claim it is all in your head. I had a IDS (infectious disease specialist) tell me to stop practicing voodoo and I would get better. I am NOT MAKING THIS UP! Because of the CDC not changing their suggested treatments, insurance companies often will not cover prolongend Lyme treatment. You NEED to watch the documentary "Under Our Skin" to get a better understanding of the politics which I don't have the energy to fully describe.

3. Regular tick checks.. Thats all.

4. Life altering? You got that right. My body doesn't work like it should anymore. Constant pain. No sleep pattern that a normal human could survive on. I am no longer articulate. I had a 4.0 in college, now I am lucky when I can spell my middle name. To learn something I have to study it over and over and over for hours on multiple days. Even then it is likely I will forget it in less than a month. I can't remember yesterday. I lost my wife, house, insurance, all but my closest friends and basically my job (I'll explain that at a later time). I am irrational and short fused now. I have no concept of time. I can't remember if i was diagnosed last year or the year before. I didn't know it was my birthday until someone posted it on facebook. I have trouble telling the difference between 1 minute and 10. I have really no concept of time at all. When I was the sickest, I couldn't think. I couldn't speak in full sentences. I couldn't remember simple vocabulary words. I couldn't find my way home, or remember how to do simple tasks such as copying files on to a CD-ROM. (I am really good at computers btw). I just wanted to die. I was like this for at least a year. I still have trouble with some tasks that should be no problem for me. Since my last course of antibiotics, a lot of my neurological issues have improved, but some have not. While the neurological issues got better, the physical pain started getting worse. Now I no longer have insurance and I don't know what is going to happen. It has taken me since last night to type all this.

I do not stay on trail, and I do not avoid tick infested country. It is impossible to avoid in the Northeast anyway if you are outdoorsy. Just keep checking yourself. Remember that ticks carry co-infections besides Lyme. Normal primary care docs don't acknowledge this, for the most part.

The bottom line for me is, this is an unrecognized epidemic. Avoiding the outdoors is silly, but you have to stay on top of tick checks.

Finally, from what I recall reading last night, this thread is full of misconceptions. I will address those at a later time. I am worn out from trying to write all this.

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Re: Lyme Disease and herping questions (feedback wanted)

Post by ahockenberry » May 5th, 2011, 11:08 am

Thanks everyone again for your input and perspective.
To "Notread" - you're in my prayers, buddy - hang in there and don't give up. Thanks for sharing your experiences.
I will check out "under our skin" and see what it is about - I am using Permethrin but realize there is no silver bullet
We all have to take prevention seriously if we want to remain active outdoors and be diligent about checking. I think the big lesson here is that Lyme disease is not going away anytime soon and we need to be prepared.

Thanks
Ashley

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Re: Lyme Disease and herping questions (feedback wanted)

Post by Millinex » May 5th, 2011, 11:45 am

ahockenberry wrote:Hi folks

I have been noticing an increased incidence in Lyme Disease in the Eastern US and also in places like Wisconsin and California...

See chart:
http://www.cdc.gov/ncidod/dvbid/lyme/ld ... yState.htm

I live in Ontario and Lyme Disease has been established in several areas here but making progress.
In states like NJ, PA, NY, CT, and MASS, there are thousands of new cases per year.

My questions are as follows:

1 - Have you changed your habits while out herping to protect yourself?
2 - Have you noticed an increase in ticks while out herping?
3 - Have you contracted Lyme yourself or know someone who has?
4 - Have you had success with Permethrin or DEET and with wearing long pants/hats/other coverings?

My concern is this - I would like to go back into central Pennsylvania and other areas of the northeast for herping but I am really hesitant because so many people are contracting it from what I am reading..

1 - Many people contract the disease without even knowing they have been bitten or ever seeing a tick
2 - Then there are situations where people have the disease for years without realizing that they have it or a proper diagnosis
3 - There are the standard precautions which can be taken - but ticks can and do stay on you and can get into your car, clothes, house, etc.
4 - Once you contract the disease- it is really life altering

Anyway, looking for feedback - maybe I am too paranoid - and I have also spoken to people who have had the disease numerous times and have been treated numerous times and they take it all in stride!

Or have you stayed on trails, avoided tall grass?

The bottom line is that there are so mnay states now where this is an issue - even the Smoky Mountains - so any feedback and experience would be appreciated.

Thanks

Ashley Hockenberry
I have a friend of mine who's had it for going on well over a year, and I can say it's pretty nasty stuff if it doesn't get treated right away. If you don't know what bit you, and don't get treatment it can really ruin your life. Either way, I haven't changed my habits very much, however I have started noticing (and killing) the ticks I find, because generally they are little devil animals.

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Re: Lyme Disease and herping questions (feedback wanted)

Post by mikez31 » May 6th, 2011, 1:49 pm

I spent the first 25 years of my life in Northeast Kansas, where ticks and Lyme are always a concern. Here are a few things I did to minimize the danger:

1) Clothing - I usually wore long pants tucked into my socks, and long rubber boots on top of that. Definitely not as comfortable as shorts and hiking boots, but almost all of the ticks I found were on this protective layer rather than on me. I also tried to wear light colored clothing to make it easier to spot them.

2) While in the field, I would take a quick scan of my clothing and exposed skin every couple of minutes and flick off any ticks that had managed to hitch a ride.

3) My Dad was pretty hardcore about making sure that I did a thorough check upon arriving home. In fact, he wouldn't even let me in the house until I had thrown all my clothes in a trash bag and performed a full-body check. Once I was in the privacy of my bathroom, I would use a handheld mirror and a flashlight to check the hard-to-see areas.

4) Finally, I moved to Southern California, where I can probably count on one hand the number of ticks I've seen while herping :) They're still out there, but nothing like back east.

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Re: Lyme Disease and herping questions (feedback wanted)

Post by dylank » May 6th, 2011, 2:12 pm

i have had lyme disease and it was terrible.I was ten though but I got over it.I am herping in pennsyvania this summer so nice to know about this.First post on the site too.

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Re: Lyme Disease and herping questions (feedback wanted)

Post by spinifer » June 10th, 2011, 3:05 pm

FYI - the documentary on Lyme Disease "Under Our Skin" is now available on Netflix Instant. I recommend watching it.

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Re: Lyme Disease and herping questions (feedback wanted)

Post by Fundad » June 10th, 2011, 3:44 pm

FYI - the documentary on Lyme Disease "Under Our Skin" is now available on Netflix Instant. I recommend watching it.
I will, thanks for the tip..

Fundad

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Re: Lyme Disease and herping questions (feedback wanted)

Post by pete » June 10th, 2011, 4:25 pm

I test positive for lyme every other year or so. i probably have three or four tick embeds a week,mostly from work or walking the dog.. Somebody asked about a lyme vaccine for humans,the one for dogs works GREAT. the one for humans is BAD news,I was asked to be part of the study group when it became available. i declined, but several people in the group had very serious effects from the vaccine. It essentially gave them the disease instead of bolstering the immune system.

the best way to avoid lyme is to be vigilant on tick checks, don't let paranoia keep you indoors. Too much to see out there!

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Re: Lyme Disease and herping questions (feedback wanted)

Post by Brian Hubbs » June 10th, 2011, 6:37 pm

A home remedy a friend shared with me this spring is LYSOL. Spray your clothes with Lysol instead of tick repellant. It works much better and is a lot cheaper...just try not to breathe the fumes.

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Re: Lyme Disease and herping questions (feedback wanted)

Post by spinifer » June 11th, 2011, 6:45 am

I got the vaccine when it was available...no ill effects noticed. And some how despite being biten by many deer ticks, dog ticks, lone star ticks, and seed ticks every year for my whole life have yet to become sick or notice any symptoms of tick related illness. With the effect so variable person to person, its possible I have it and dont realize because the symptoms are not severe.

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Re: Lyme Disease and herping questions (feedback wanted)

Post by spinifer » June 11th, 2011, 7:16 am

Here are some Lyme disease fact that a friend compiled and posted on FB. I am sure she doesnt mind me reposting them here:

"I've noticed that there is a wealth of misinformation about Lyme disease out there, so in celebration of Lyme Disease Awareness Month, I have compiled the following facts which I have taken great pains to make sure are accurate, up-to-date, and from reliable sources. But the long and short of it is, Lyme is EVERYWHERE, easy to get, and hard to get rid of. It can be mild or devastating or anything in between, depending on how early you catch it and how well you treat it. I can practically guarantee that someone you care about WILL get Lyme disease or a related tickborne illness sooner or later, and when they do, you'll want to be prepared. So please keep reading!

The CDC estimate that 90% of people with Lyme disease are still undiagnosed, which means that probably someone who is reading this has Lyme disease and doesn't even know it. If you catch it early, meaning in the first couple days, a few weeks of antibiotics may be all you need to get rid of it. Otherwise, it can spread to every organ and affect every system in the body and become what is known as "chronic disseminated Lyme disease"-- much less fun to deal with.

Although it's true ticks are most common late spring-early summer, they can survive over winter and live for years, so you can be at risk of getting Lyme & other tickborne diseases ANY time of the year. So don't let down your guard for a minute!

Untreated Lyme disease can lead to meningitis, dementia, memory loss, nerve damage & paralysis, cardiomyopathy, cardiomegaly, enlarged spleen, cystitis, conjunctivitis, and depression (to name a few). These conditions can be prevented with early diagnosis. If you find a tick attached to you, get to a doctor right away!

Deer ticks aren't the only ticks you have to worry about-- lone star ticks, dog ticks, and other common tick species are excellent vectors for Lyme disease and other tickborne illnesses. So if you find ANY kind of tick attached to you, be on the lookout for any weird symptoms and get to a doctor right away if they develop!

The CDC ranks the quality of life for Lyme patients as lower than that for recent heart attack survivors, and the most common cause of death among Lyme patients is suicide.

Although many people erroneously assume Lyme disease is only found in the northeast, you can actually get it in all 50 states (it's the fastest-growing infectious disease in the US!) as well as Europe, Australia, Africa, Asia, and South America. So literally EVERYONE reading this is at risk!

An estimated quarter of a million people in the US will become infected with Lyme disease this year. I don't want any of my friends to be among them-- wear DEET bug spray & check for ticks often!

There are a lot of rumors flying around that a tick must be attached to you for some arbitrary length of time before you can get infected, but in reality, pathogen transmission can be instantaneous. Think about it: mosquitoes, fleas, etc. can infect you with all kinds of bacteria & viruses with a bite that only lasts a second-- why would ticks be any different?

Lyme is frequently misdiagnosed as MS, ALS, Chronic Fatigue, Autism, Alzheimer’s, Parkinson’s and others. It is often referred to as “The Great Imitator”, as it can imitate virtually any symptom of any disease. However, unlike many of those other diseases it is treatable (with a lot of work & the right drugs).

Ever thought you might have Lyme disease, but got a negative test result? It could still be Lyme (the test is VERY unreliable)! A recent Johns Hopkins study determined that current testing procedures miss up to 75% of cases. And less than 50% of people ever get the classic "bull's eye" rash. You need a clinical diagnosis from an expert before you can rule out Lyme.

There are more than 300 strains of the bacterium that causes Lyme (Borrelia burgdorferi) worldwide, meaning that a) the tests are very inaccurate-- they only test for some of those strains, and b) it has high antigenic variability and can evade the host immune system easily, especially if you don't catch it early.

Ticks make excellent vectors because they live for a long time and feed on many hosts, so they accrue all kinds of bacteria, viruses, and protozoal agents over the years. If you get Lyme disease, chances are you'll get another tickborne illness at the same time. Many people don't even get tested for these "co-infections" because they don't know about them. If you find a tick, don't just worry about Lyme-- worry about Rocky Mountain spotted fever, ehrlichiosis, babesiosis, Q-fever, mycoplasma pneumoniae, Rickettsia typhi, and human granulocytic anaplasmosis (I have had all of the above!).

You don't necessarily have to be an "outdoorsy" person to get Lyme disease. I got it just by being in my backyard in the suburbs of DC when I was a baby. And if your pets aren't up to date on flea & tick preventative, they can bring ticks right into your home. So don't think you're safe just because you haven't been hiking deep in the woods.

Lyme disease is not cheap! So far this year I've had to pay more than $11,000 out of pocket (or technically out of my dad's pocket...) because health insurance companies usually refuse to pay for Lyme treatment (why? Because this disease is spreading so fast, they would all quickly go bankrupt if they tried to cover the costs). If you don't have $11,000 handy right now I encourage you NOT to get this disease!

I apologize for being so in-your-face with Lyme disease information all month but this is obviously an issue I care about STRONGLY. It's much better to overreact to a tick bite and take a few weeks of antibiotics, than to ignore it and wind up suffering unnecessarily (physically, mentally & financially) for decades afterwards. If you were going overseas to some exotic, tropical locale, you'd probably go to a travel clinic first and get anti-malarial medicine, yellow fever shots, etc... so why wouldn't you take a little bit of trouble to avoid a disease that is RIGHT HERE in your backyard, which you are MUCH more likely to get, but which has just as many (if not more) unpleasant symptoms and lifelong repercussions? It just doesn't make sense!

It pays to be paranoid! Wear DEET bug spray, check for ticks constantly, and if you find any, watch out for ANY kind of symptom, and get to a doctor and DEMAND that you get on antibiotics right away! Believe me, it's worth it!"
(written by Ashley K.)

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Re: Lyme Disease and herping questions (feedback wanted)

Post by Fundad » June 11th, 2011, 11:23 am

:shock: :shock: OK Nate, I am NEVER going outside again...

:shock:

Fundad

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Re: Lyme Disease and herping questions (feedback wanted)

Post by cbernz » June 11th, 2011, 12:55 pm

spinifer wrote:There are a lot of rumors flying around that a tick must be attached to you for some arbitrary length of time before you can get infected, but in reality, pathogen transmission can be instantaneous. Think about it: mosquitoes, fleas, etc. can infect you with all kinds of bacteria & viruses with a bite that only lasts a second-- why would ticks be any different?
Does your friend have data on this? There are actually very good reasons ticks COULD transmit disease differently from fleas and mosquitos, including the fact that the latter are insects instead of arachnids, and all have different varieties of biting mouthparts. What I understand is that most of these infectants are in the stomach of the tick, mosquito, flea, etc. and that in order to infect you there has to be some sort of "backwash" as the pressure inside the bug gets high. Mosquitos feed fairly quickly, so if this logic holds, they would also be able to infect you faster.

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Re: Lyme Disease and herping questions (feedback wanted)

Post by spinifer » June 11th, 2011, 3:08 pm

Does your friend have data on this? There are actually very good reasons ticks COULD transmit disease differently from fleas and mosquitos...
Well sure, ticks are different from mosquitoes, but you could argue that either way. She writes it can be instantaneous. The point is there is no specified time at which a tick must be attached before it can transmit a disease (I have always heard 24 hrs). You are at risk the moment a tick is attached, although the risk is very small. The longer a tick is attached the greater that risk becomes. I.E., Length of exposure is directly related to probably of infection.

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Re: Lyme Disease and herping questions (feedback wanted)

Post by cbernz » June 11th, 2011, 4:54 pm

Right, but the "24 hours" thing is more than just a rumor, it is the common wisdom and in virtually every piece of literature you see (with some variations). I had not heard before about instantaneous infection, so I wonder if this is coming from real data, or if all of this, including the 24 hours maxim, is just speculation. Personally, I really hope there is some truth to the 24 hours because I will go broke if I have to go to a doctor and get pills every time a tick lands on me. I think I could even live with it if the truth (as is often the case) is somewhere in the middle.

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Re: Lyme Disease and herping questions (feedback wanted)

Post by ahockenberry » June 11th, 2011, 5:18 pm

Thanks Ashley K - really appreciate your post and you sharing from your own life - A few things are sure

- Lyme Disease is here to stay and

1 ) There is a lot of ignorance about it still
2 ) Many people have it and don't even know it
3 ) The medical community (at least to some degree) have their heads buried in the sand and would prefer to treat symptoms
4 ) Insurance companies most likely see this as a very expensive disease to treat and treat it like a 'hot potato'
5 ) Most people are not taking serious precautions and are likely to get it eventually if they live in an area where it is endemic and are active in the outdoors
6 ) I think we should all take heed to what those who have battled it for years have to say - it may not kill you - but you will wish you were dead
7 ) Perhaps the most 'at-risk' group are young kids playing in back yards in residential areas which back onto ravines and forests which have lots of deer and wildlife

Also - I find it very ironic that virtually everyone in North America was herded into large innoculation centres to get their vaccine against H1N1 and the absolute
histeria about the disease - I mean histeria - some might say - well, we all had to get innoculations to stop the spread of the disease - Okay, well if that is the
case, where is the outcry, education programs, and treatment for Lyme?

Here is what I am doing when I go out - because I refuse to stay inside all day long and watch daytime television!!

1.) I typicall wear boots, high socks and usually sweat pants because they have elastic at the ankles and I almost always wear long pants and I can tuck them into the socks.

2.) I spray generous amounts of Permethrin - which you can buy at Cabelas and Bass Pro Shops and spray it on my clothing - it has been proven effective against ticks

3.) I wear a wide brimmed hat - for protection from the sun, mosquitos, black flies, deer flies and ticks

4.) I spray DEET on my skin - what little is exposed

5.) When I go into a really buggy area - I wear a bug shirt which covers everything including head, hands, neck, face.

6.) I try to stay out of dense brush and high grassy areas and avoid leaf litter. I do not sit directly on the ground - unless it is a rock - I do not lean up against trees

7.) Whiles hiking, I continually check around then back of my neck, ears, and exposed skin

8.) Upon arriving home, I remove all clothing and put it aside for immediate washing - in the laundry room

9.) Do a thorough tick check - use mirrors, get your spouse or significant other to help - look on your back, crotch, back of the neck, and armpits

10.) Shower immediately after tick check

Yes, I will know some people will read this and think I am crazy - perhaps but I would rather be safe than sorry and have a methodical approach to protection
becuase any disease that attacks the central nervous system can be very disabling.

Stay safe out there!
Ashley

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Re: Lyme Disease and herping questions (feedback wanted)

Post by spinifer » June 12th, 2011, 6:33 am

cbernz wrote:Right, but the "24 hours" thing is more than just a rumor, it is the common wisdom and in virtually every piece of literature you see (with some variations). I had not heard before about instantaneous infection, so I wonder if this is coming from real data, or if all of this, including the 24 hours maxim, is just speculation. Personally, I really hope there is some truth to the 24 hours because I will go broke if I have to go to a doctor and get pills every time a tick lands on me. I think I could even live with it if the truth (as is often the case) is somewhere in the middle.
Ok, I will ask her about it.

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Re: Lyme Disease and herping questions (feedback wanted)

Post by cbernz » June 12th, 2011, 7:05 am

One more tip to add to the many good ones already posted. Don't try to wash a live tick down the sink. It doesn't work. They can cling to the pipe even as water is pouring down the drain and will eventually crawl back out. I usually flush them down the toilet, but you have to check to make sure they really go down.

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Re: Lyme Disease and herping questions (feedback wanted)

Post by dthor68 » June 13th, 2011, 9:05 am

spinifer wrote "Here are some Lyme disease fact that a friend compiled and posted on FB. I am sure she doesnt mind me reposting them here:"

I dont think there are any "facts" about lyme disease! What it boils down to is a group of symptoms. Some people get a bullseye rash, some don't. Some people test positive, some don't. Some people live in New England, some live in the SE, even out west. The CDC still says that lyme is only known to occur in NE. There is no evidence that what folks are getting in other states is lyme, even if they test positive. Because of this lack of proff there is a huge loophole that people are taking advantage of. One, it has created a new Dr. Some Infectious Disease Dr.'s have started specializing in lyme disease. It has made them a fortune. These doctors and there patients are very loud and have spread the word very fast. Two, it has made a fortune for Vets and pet care. Without any proff that lyme disease is the culprit, they air commercials for drugs and provide treatment for lyme disease in pets. They can easily get away with this. It is not like you can ask your pet if they feel better or even felt bad to begin with. This factless loophole is making a lot of dishonest people rich.

The only fact I see here is that more and more people are geting sick with this huge list of symptoms. Myself included. Personally, I like the Chronic Fatigue Syndrome/Fibromyalgia diagnosis better than the lyme. They still do not know what causes CFS/Fibro. It could very well be some form of lyme that causes it. But, until they can prove it. The reason I saw a lyme Dr. was I wanted a long treatment on IV antibiotics. I thought it could help. It has helped people with MS and even ALS, so why not. And yes, there are even people who think that MS and ALS are caused by lyme! Anyway, abx did not work for me. The only way I see us becoming more knowledgable in this group of symptoms is for more important people to get sick with them. The right person with lots of money could do a great deal on this. The latest popular victim is Trevor Bayne, winner of the 2011 Daytona 500. Because of his questionable lyme disease he has not raced since winning Daytona.

I am surprized that so many here are so quick to say that lyme is fact. They all told us that snakes were in fact bad. We learned the truth on our own. What sets all of us in here apart from the mainstream is our need of facts. Lies keep us from moving forward. Right? All that said, I am not about to say lyme, or some form of, is not the culprit. It just not a fact at the moment.

Derek

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Re: Lyme Disease and herping questions (feedback wanted)

Post by cbernz » June 13th, 2011, 9:58 am

dthor68 wrote:These doctors and there patients are very loud and have spread the word very fast.
This is absolutely not true. Lyme doctors operate discretely, do not advertise at all, and many do not even accept insurance. Try actually finding one. There are online networks designed to help people locate what are essentially underground doctors. At least that was my experience. It seems to me they are more motivated by trying to help people that nobody else will touch than a desire to get rich.

There is another horrific, debilitating disease, which can be fatal, and which exhibits a wide array of symptoms, none of which can by itself be used as a diagnosis. It's called AIDS. It is pretty much indisputed that AIDS is caused by HIV infection, although this was not always the case. Lyme is no less a fact just because the symptoms are not in and of themselves diagnostic. And even if you dispute "chronic Lyme syndrome," it is ABSOLUTELY a fact that ticks can carry pathogens that make people ill, and one of those pathogens can directly result in the erythema migrans rash, which can be accompanied by a whole host of unpleasant symptoms.

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Re: Lyme Disease and herping questions (feedback wanted)

Post by jimoo742 » June 13th, 2011, 10:07 am

The odd thing to me is that yes, I got Lyme. It wasn't all that bad (caught it early), but in all my years of hiking in New England (I've lived here 25 out of 39 years), I've never, ever seen a deer tick. TONS of wood ticks. Not one single deer tick.

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