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Lyme Disease Fears: Ways to Reduce the Risks (Update on Friend -189)


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What's the best treatment?

 

Doxycyclin? Something else?

 

Bill

Doxy yes, but DH was on two other things (to cover possible coinfections). Can't recall names but one was an anti-malarial and made DH even sicker than Lyme. But it was one month and it was all over.

Bill, if you have to deal with this, you will have to look up the guidelines online (it's a PDF book of I recall). Lyme treatment is a production, because you need something to counter doxy's side effects, etc). But hopefully you won't!

Edited by madteaparty
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The permethrin works well, but is a neurotoxin; pay attention to the treatment instructions (for CLOTHING), and spray his hiking shoes / sneakers, too. 

 

We live deep in tick country and have outdoorsy kids; they use a combination of natural (preventive) measures as well as the DEET (on the skin) and permethrin (on the clothes). There are things you can do to help your yard / local vicinity, but when you're in the woods, "high precaution" is the SOP. The tick tools are much better than tweezers or fingernails for removing the WHOLE tick. Also, a shower will help if the tick is not bitten-in, but it's not a sure-fire removal; at bare minimum, teach him (A) how to check himself (methodically, top to bottom, front to back) and (B) how to remove a tick if he does find one.

 

$.02 (adjusted for inflation)

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I got the vaccine for European Tick Fever/TBE when I lived in Austria. This is a viral disease; viruses in general seem to be easier to develop vaccines for than bacterial disease such as Lyme. I believe there is ongoing research targeting a Lyme vaccine though.

Ah ok. DS doesn't have that vaccine and over there now. Hope it will be ok.
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I'm saying I wouldn't send my kid on that trip.

 

But I feel kinda insane for saying it because basically I don't believe life is risk free anyway so the benefit might outweigh the risk. 

 

This is no joke.  I personally know a ton of homeschoolers who are big nature people who got Lymes.  Those who treated right away were fine.  Those who didn't know, were not.  They suffered.  Some were also the same people to roll their eyes at me for my cautiousness. 

 

Or, you could know, have it medically confirmed, and take the meds carefully (can't remember if I got 2 or 3 weeks of Doxy), and still suffer.

 

PTLD. Post-Treatment Lyme Disease. If anyone is wondering if it's real, I have a medical history which seems to be a textbook case for it. Oh joy.

 

 

But some people get bit and don't have side effects at all. Some people get better with a brief ABx. Some people don't.

 

 

Not to further scare the OP! Not all ticks carry nasty diseases that can disable or kill you, after all!

 

 

Wear pants when hiking, even if it is on a wide trail. That was my mistake. 

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The only time I have every given one of my children an abx is when I found a tick on my then-2yo's head...probably got it in our Midwest backyard. The ped was great giving a sight-unseen script for whatever the "right abx" at the time was for it. I saved the tick and all that, but evidently you need to move fairly quickly with the abx. I was all in. I really hate that it ruins so much outdoor stuff.

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Bill, I just want to say this: I know you are getting a lot of conflicting, and perhaps confusing, advice. But you need to understand the following fact: With the notable exception of those of us who had a bullseye, got treatment, and got better (IOW, acute Lyme disease), I know of no two Lyme stories which are even remotely similar. And I know many, many people who have had Lyme disease. Our different experiences color our views of the disease, just as it does for doctors.

 

This disease can attack the body in many different places. It also has multiple effective ways of defending against treatment and many Lyme experts believe that you can never fully eliminate Lyme spyrochetes from your system once you get beyond the acute infection. The best you can hope for is that your immune system can learn to recognize the infection in your body and maintain the infection at a low-enough level to allow for normal life function.

Edited by RegGuheert
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Or, you could know, have it medically confirmed, and take the meds carefully (can't remember if I got 2 or 3 weeks of Doxy), and still suffer.

 

PTLD. Post-Treatment Lyme Disease. If anyone is wondering if it's real, I have a medical history which seems to be a textbook case for it. Oh joy.

 

 

But some people get bit and don't have side effects at all. Some people get better with a brief ABx. Some people don't.

 

 

Not to further scare the OP! Not all ticks carry nasty diseases that can disable or kill you, after all!

 

 

Wear pants when hiking, even if it is on a wide trail. That was my mistake. 

 

That sucks!  The people I know were ok after immediate treatment.  It's disturbing to learn it's not always that way.  ; (

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My longish haired son wears a Buff on his head to keep his hair under control when outside. There is a version of the Buff with Insect Shield.  (Google to see various ways a Buff can be used as head gear.)

 

Gaiters are helpful, but not everyone will wear them.  There are lightweight thruhiker ones, but I imagine that to a 15 year old they might not be cool enough.

 

Dirty Girl makes some fun lightweight gaiters that work well with trail runner type shoes.  I suspect that an insect repellent could be applied to them.

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Bill, I just want to say this: I know you are getting a lot of conflicting, and perhaps confusing, advice. But you need to understand the following fact: With the notable exception of those of us who had a bullseye, got treatment, and got better (IOW, acute Lyme disease), I know of no two Lyme stories which are even remotely similar. And I know many, many people who have had Lyme disease. Our different experiences color our views of the disease, just as it does for doctors.

 

This disease can attack the body in many different places. It also has multiple effective ways of defending against treatment and many Lyme experts believe that you can never fully eliminate Lyme spyrochetes from your system once you get beyond the acute infection. The best you can hope for is that your immune system can learn to recognize the infection in your body and maintain the infection at a low-enough level to allow for normal life function.

Yup. DS was told he would always test positive for Lyme after having it once. Whether that's true or not, who knows, but it does leave me concerned. He likely harboured Lyme for a year without anyone having any idea.

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I'm in the middle of treating a horrific case of third stage Lyme. He lost the use of several of his joints.

 

It's magnesium that inhibits absorbtion of doxycycline.

 

I can't stress how small and how numerous the ticks are in new England this year enough. We do checks. Still the Lyme. It's such a huge problem.

 

Yes to the tool. Yes to the deet...don't trust anyone saying their herbal formula is just as effective as deet. There was a study and people were all about it. The study was comparing v. low deet level with the herbal formula. You want high deet. I use 100% but ymmv.

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Ah ok. DS doesn't have that vaccine and over there now. Hope it will be ok.

I read somewhere that the estimated risk of an unvaccinated visitor catching it was something like 1 in 10,000. Not a major traveller's risk.

 

I lived within a block of the Vienna Woods and hiked there all the time but never saw a tick.

Edited by maize
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Just looked it up. Dh'so doc said no foods or supplements rich in calcium or magnesium 2 hrs before or after doxy. I do not know why both, but that is what I have in the file and is on the computer generated physician's instructions.

 

Best ask if he ends up on meds.

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I read somewhere that the estimated risk of an unvaccinated visitor catching it was something like 1 in 10,000. Not a major traveller's risk.

 

I lived within a block of the Vienna Woods and hiked there all the time but never saw a tick.

 

A was bitten by a tick in Germany as a baby.  He got very ill after (high fever too).  I don't know if it was related.  We did take him to a doctor and the doctor said they don't have Lymes there (not sure if this is true or not). 

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And even if the ticks aren't on the body, they could be on the clothing or backpack. So inspect there before entering the cabin or tent. DHs brother had an imbedded tick in his groin as a kid. So look/feel there too!

 

Also, if he finds a tick crawling, he should kill it, and not just toss it away (it will search to find someone else). Camp fire. Flush it. Or destroy its exoskeleton in some way with a tool.

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Yup. DS was told he would always test positive for Lyme after having it once. Whether that's true or not, who knows, but it does leave me concerned. He likely harboured Lyme for a year without anyone having any idea.

Our "therapeutic plan" we signed off in before DS was released from the hospital states that if the course of oral antibiotics does not eliminate the Lyme spirochetes, he will be required to have iv antibiotics. I forget the name of it but have it written down and could find it.

 

The way the infectious disease specialist described it to me was that as long as Lyme is treated while it is in "stages..." The joint problems, the rash, the heart problem etc... It is possible to eliminate completely. Once it goes "chronic" it can not be eliminated.

 

It's absolutely freaking bananas that it can just lie low without symptoms until it goes chronic.

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Just adding that a hand held mirror is very helpful for self checking for ticks...some spots are, umm, hard to see well without help. 

 

And yes, it is BAD year for ticks here in New England.  :(   We've been finding  lots of deer and dog ticks on the kids. Daily tick checks are part of life.

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you guys are scaring me away from ever moving to the Eastern US. yeah we have ticks and occasional Lyme around here, but much less.

I love it here otherwise but honestly this been a nightmare and I'm ready to go already. It's a *particularly* bad year, it wasn't like this the last time we were on this coast.

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I'm in the middle of treating a horrific case of third stage Lyme. He lost the use of several of his joints.

Two of our children got the joint pain even in the very first stage of acute Lyme (with bullseyes). I can remember that they each lost the ability to walk and spent between a few days and a week crawling (literally!) around the house. Fortunately they were fine after treatment with amoxicillin.

I can't stress how small and how numerous the ticks are in new England this year enough. We do checks. Still the Lyme. It's such a huge problem.

The worst story I ever heard was from my sister and her husband. They were on the beach in Virginia Beach, VA, and they EACH found ABOUT ONE HUNDRED deer ticks on their legs! They bagged up some of the ticks so that the doctors could confirm what they were.

 

That's an alarming number of ticks, but really that is much better than one tiny one in your head or pubic hair, on your back, or even on your arm with you thinking it is a tiny scab since they knew they were there (and could get treatment) and the ticks did not stay latched on for long

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Two of our children got the joint pain even in the very first stage of acute Lyme (with bullseyes). I can remember that they each lost the ability to walk and spent between a few days and a week crawling (literally!) around the house. Fortunately they were fine after treatment with amoxicillin.The worst story I ever heard was from my sister and her husband. They were on the beach in Virginia Beach, VA, and they EACH found ABOUT ONE HUNDRED deer ticks on their legs! They bagged up some of the ticks so that the doctors could confirm what they were.

 

That's an alarming number of ticks, but really that is much better than one tiny one in your head or pubic hair, on your back, or even on your arm with you thinking it is a tiny scab since they knew they were there (and could get treatment) and the ticks did not stay latched on for long

 

This was something similar that happened to an acquaintance of mine.  They wore long pants, shirts, and used DEET.  She has four kids.  She said when they got home to check after walking through some grassy/wooded area there were a zillion ticks on all of them around where their waist band is.  She was horrified.  Nobody felt it.  They were well dressed and had used DEET. 

 

Luckily nobody had issues.

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Be aware that doxy has some well-known but not on the label side effects.

I took it for ocular rosacea, and it made me horribly depressed, as in, it hurts to be alive type depression.  It was abrupt in starting and stopping with the drug, quite alarming.  I cannot imagine taking it for a month.

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Be aware that doxy has some well-known but not on the label side effects.

I took it for ocular rosacea, and it made me horribly depressed, as in, it hurts to be alive type depression.  It was abrupt in starting and stopping with the drug, quite alarming.  I cannot imagine taking it for a month.

 

Lymes can also cause psychological problems as well.  My uncle was severely depressed from it and even got a divorce.  I don't think he felt right for 10 years.  It was that bad. 

 

That was many years ago when the awareness wasn't as good as it is now though.  It took awhile for them to even figure out what was wrong.

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Be aware that doxy has some well-known but not on the label side effects.

I took it for ocular rosacea, and it made me horribly depressed, as in, it hurts to be alive type depression. It was abrupt in starting and stopping with the drug, quite alarming. I cannot imagine taking it for a month.

Yes antibiotics are serious business.

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Ticks, as long as they aren't itty bitty, flap back and forth when you run your fingers over them. Be careful not to squeeze them when removing them. Put the tick between two pieces of tape in case anyone wants to check it.

 

Do a periodic check of your clothes and skin if you are in long grass or brush. Look at the front of you and ask someone to loik at the back of you. You say Do I have any ticks and hold your arms out and turn your back on the other person. This is super common here. Feel behind your ears at the same time. Take a look at your ankles.

 

When you go to the bathroom, have a quick look at yourself.

 

Before you get into your sleeping bag, do a thorough check of all skin, including all cracks. You do your back with a mirror, feel any awkward places, comb your hair, and run your fingertips through your hair in small circles feeling for any loose flaps or bumps. Don't put your clothes on your bunk. Put them on the floor or something. Look at your clothes when you put them back on in the morning.

 

We spray hats and shoes with Deep Woods Off before putting them on. If we are in long pants, we spray from the knees down.

 

The good news is that other than when there is snow, summer has fewer ticks. Spring and fall are much worse. He is less likely to pick up ticks on bare ground or mown grass.

 

I hope he has lovely weather!

 

Nan

Edited by Nan in Mass
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AAAaaaah!

 

On Wednesday, we have an exchange student from Spain coming here. I made careful, careful plans that involved NOT going outside. I don't want to send him home in a month with Lyme and no one in Spain know how to treat it.

 

The organization that we're working with announced that they're having a 5 hour picnic at a woodsy park the 2nd day they are here. I'm soooo irritated. It seems to be mandatory and I think my student will feel super awkward if we're the only ones who don't show up....but Lyme. I take it very, very seriously. I just don't go outside. Ever.

 

I think I'm going to email the lady running this and tell her I have serious reservations about the woodsy trip, especially for people from another nation that may or may not know anything about Lyme.

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I thought summer was the worst for ticks.

 

Ticks, as long as they aren't itty bitty, flap back and forth when you run your fingers over them. Be careful not to squeeze them when removing them. Put the tick between two pieces of tape in case anyone wants to check it.

Do a periodic check of your clothes and skin if you are in long grass or brush. Look at the front of you and ask someone to loik at the back of you. You say Do I have any ticks and hold your arms out and turn your back on the other person. This is super common here. Feel behind your ears at the same time. Take a look at your ankles.

When you go to the bathroom, have a quick look at yourself.

Before you get into your sleeping bag, do a thorough check of all skin, including all cracks. You do your back with a mirror, feel any awkward places, comb your hair, and run your fingertips through your hair in small circles feeling for any loose flaps or bumps. Don't put your clothes on your bunk. Put them on the floor or something. Look at your clothes when you put them back on in the morning.

We spray hats and shoes with Deep Woods Off before putting them on. If we are in long pants, we spray from the knees down.

The good news is that other than when there is snow, summer has fewer ticks. Spring and fall are much worse. He is less likely to pick up ticks on bare ground or mown grass.

I hope he has lovely weather!

Nan

 

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My boys were 8 and 3. No bullseye rash, no tick found on them. We were in NJ. My oldest son was having trouble sleeping, no appetite, and was extremely tired. He didn't want to walk and complained his legs were hurting. My youngest had a high fever and was lethargic. Also, no appetite and trouble sleeping. The doctor took one look at Eli, my oldest, and said "we are doing a Lyme test right now. His joints are so swollen." To my youngest, Silas, he said "just a virus". Well Elis Lyme test came back positive in three days, and Silas was still sick. I INSISTED on testing all of my children, and they obliged. Silas was the only one of the other three to have Lyme.

 

4 weeks of amoxicillin.

 

No doxycycline because my oldest was underweight and had lost more weight with the Lyme.

 

It was a nightmare. Oldest still has trouble sleeping. Youngest developed speech problems soon after diagnosis.

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Lymes can also cause psychological problems as well. My uncle was severely depressed from it and even got a divorce.

That's exactly right. DS17 was the unlucky one here who had no bullseye rash. Unfortunately, we only knew about chronic Lyme disease from my BIL who had joint pain and heart palpitations. Unfortunately, based upon our ignorance of the broad range of effects Lyme could cause, we dismissed DS17's moodiness, severe stuttering, somniphobia and depression (including suicidal thoughts) as simply severe puberty symptoms brought on by hormones. We learned the truth about his condition once we saw the movie "Under Our Skin" and got him to a Lyme-literate physician. (We sought out the doctor featured in the movie who had his license revoked in North Carolina because he treated "a disease which is not recognized by the CDC.") Our son was under a very complex antibiotic regime for 18 months. (All treatment required up-front payment in full, thanks to the CDC.). His continued recovery since that time has been slow but steady since treatment ended just over three years ago.

 

Does he still have symptoms of chronic Lyme disease today? Yes, he still appears to have some of the tremors in his hands and while his stuttering is much better, it is there. But the simple fact is that we have our wonderful son back! It is an amazing blessing given how far gone he was!

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....but Lyme. I take it very, very seriously. I just don't go outside. Ever.

Garga, we have decided that we just cannot do that.

 

As much as Lyme has affected our lives, we feel we must enjoy the outdoors. MomsintheGarden and I have literally spent several hours out in waist high grass in our fields this week. Yes, we find ticks (both deer and wood ticks) every day on someone and the cats often have several on their eyes and ears. They are used to, and thankful for, MomsintheGarden holding their heads and lovingly removing them, one by one.

 

She does use tea tree oil in the wash and that seems to greatly reduce the incidence of ticks. Unfortunately, Walmart has been out for a while, so I don't know if she has been out for the past few months, or not. She just got more.

 

MomsintheGarden and DS15 have not yet had Lyme disease, as far as we know. I really don't know if the rest of us have some sort of immunity, or not. I don't really have good evidence to support this idea, but I do believe that someone travelling here from somewhere that does not have much Lyme is more likely to be seriously impacted by the disease.

 

Fortunately life is currently fairly normal WRT infectious diseases in our family. I pray that will continue to be the case.

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Doctors everywhere will treat for Lyme IF YOU HAVE A BULLSEYE rash. The reason is that is a definitive diagnosis for Lyme according to the CDC. I know this because I happened to be in Santa Clara, CA, when I came down with Lyme and I easily got treatment by walking into a clinic there because I had a very clear bullseye. I told the doctor I had seen more cases of Lyme than he had since I was only his second case.

 

The problem comes about if there is no bullseye (or one is not seen). Then you are at the mercy of a system which practically refuses to diagnose this serious disease under that circumstance. Instead, many Lyme victims will get a diagnosis for almost anything else if they have no bullseye and a negative western blot result.

So true. My first Lyme experience was with DD, when she was around 8? Or 9? She had a lymph node lump and severe, unrelenting headache. One of the FIRST questions I asked (though no experience to that point yet) was, "Could it be Lyme Disease?" This was met with immediate dismissal and my poor child was put through a dozen tests, each one more terrifying (as a parent) than the last, including an MRi for a brain tumor. I finally brought up Lyme again, they ran the bloodwork and - voilĂƒÂ¡! That was the issue.

 

I do not mess around anymore. I don't care if I have to be *that* mom. My second child also ended up positive for Lyme a year or two later; he had painful knees and joints. I no longer sit placidly by while they tell me it can't be Lyme if I didn't see the rash or find the tick. If my kid has odd symptoms and we can't figure out why, I demand a test for Lyme. If my kid has an embedded deer tick, I go for prophylactic treatment. We live in the woods; my kids play outside and we hike. We have ALL been treated for it at least once now, some of us due to a positive result, others prophylactically. Even my DOG had Lyme.

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I love it here otherwise but honestly this been a nightmare and I'm ready to go already. It's a *particularly* bad year, it wasn't like this the last time we were on this coast.

Apparently the "acorn" test indicated a bad year this year. We did start seeing them way earlier than I expected but *knocks wood** June hasn't been so bad. Maybe because I free range chickens* all day? But we hike once a week minimum too.

* i lose chicken to predators often.i consider it cost of Lyme prevention. Lost chicken cost hasn't reached the out of pocket cost for a single Lyme specialist visit we had for DH ;)

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Apparently the "acorn" test indicated a bad year this year. We did start seeing them way earlier than I expected but *knocks wood** June hasn't been so bad. Maybe because I free range chickens* all day? But we hike once a week minimum too.

* i lose chicken to predators often.i consider it cost of Lyme prevention. Lost chicken cost hasn't reached the out of pocket cost for a single Lyme specialist visit we had for DH ;)

I should adopt this philosophy. I haven't free ranged my chickens in a couple months because my most recent racoon attack was just sooooooo brutal. One of my hens was left alive, but...in bad shape. Honestly, I would have prefered the dang predator had just eaten her head off rather than left her in such horrid shape.

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AAAaaaah!

 

On Wednesday, we have an exchange student from Spain coming here. I made careful, careful plans that involved NOT going outside. I don't want to send him home in a month with Lyme and no one in Spain know how to treat it.

 

The organization that we're working with announced that they're having a 5 hour picnic at a woodsy park the 2nd day they are here. I'm soooo irritated. It seems to be mandatory and I think my student will feel super awkward if we're the only ones who don't show up....but Lyme. I take it very, very seriously. I just don't go outside. Ever.

 

I think I'm going to email the lady running this and tell her I have serious reservations about the woodsy trip, especially for people from another nation that may or may not know anything about Lyme.

I hosted a non English speaking (when he arrived;) 10 year old for 6 months including tick season. The moment it thawed I explained ticks, showed photos and told him I'd be checking him and DS nightly but to check their respective privates and hair. I cut their hair SHORT. I told his parents I was doing this. He was fine.
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Yes, we have gotten ticks in the dead of February before, while hiking frozen lakes; winter does not kill ticks. (This is irrelevant to OP, but I mention it just in case it's helpful to anyone else. *EVERY SINGLE DAY* that anyone is outside, he/she MUST do a complete tick check, no matter how hot / cold / humid / whatever.)

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Possum eat a tonne of ticks too.

 

My son's both got Lyme ticks in winter. In Boston.

We suspect DS got his in winter too. In Maine.

 

Researchers find them crawling on the snow. Cold doesn't do them all in, apparently. :(

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Apparently the "acorn" test indicated a bad year this year. We did start seeing them way earlier than I expected but *knocks wood** June hasn't been so bad. Maybe because I free range chickens* all day? But we hike once a week minimum too.

* i lose chicken to predators often.i consider it cost of Lyme prevention. Lost chicken cost hasn't reached the out of pocket cost for a single Lyme specialist visit we had for DH ;)

The acorns last fall were ridiculous! My son literally scooped them off the back lawn with a snow shovel. I still can't walk out there without shoes, there are so many.

 

I'm curious--what's the connection between big acorn years and ticks?

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The acorns last fall were ridiculous! My son literally scooped them off the back lawn with a snow shovel. I still can't walk out there without shoes, there are so many.

 

I'm curious--what's the connection between big acorn years and ticks?

It's apparently a long story and one I don't fully understand but a fat acorn year translates into much larger mice population which means many more ticks. There are big acorn years every 5 or so. Edited by madteaparty
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....

 

 

*whispers*

 

 

Are there ticks in Ohio?

Yes. It's just not at SCREAMING PANIC LEVEL like in northern New England. My younger son got a Lyme tick in Ohio three or four years ago.

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Just looked it up. Dh'so doc said no foods or supplements rich in calcium or magnesium 2 hrs before or after doxy. I do not know why both, but that is what I have in the file and is on the computer generated physician's instructions.

 

Best ask if he ends up on meds.

I was instructed not to take it with calcium or iron. Didn't know about the magnesium!

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