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Dealinggardening and lyme

Northport, NY(Zone 7a)

I know I don't post here often, but I read a lot. :) Looking for some words of wisdom from my fellow NE gardeners now.

Just wondering if any of you all have dealt with this and how you worked your way through it in your head.

I'm a gardening nut. I have a gorgeous 1 acre densely wooded lot on the northern coast of LI. I have a FT job and 2 young sons, but if I have free time and weather permits, I'm out there planting and/or taking care of my "babies." It's a mild obsession.

I've been feeling crappy for quite a while now. I am unaware of an actual tick bite. I am very careful. I wear a "tick suit" when I'm in the groundcover--long pants and boots, long sleeves, all sprayed with clothing only tick repellant. Nonetheless, I've had my share of super huge round rashes (5 inch diameter, I'd say, but never "bullseye," just solid red), always attributing them to a hyperreaction to mosquito bites. I started getting migraines for the first time in my entire life back in March. I started feeling like I had the flu in the summer. I plugged along until a few weeks pre-Sandy when I got really sick, and then things just never got better. By last week, I couldn't even bring myself to microwave leftovers for the kids' dinner. I feel like I have the worst flu ever, yet I have no fever; and I feel like someone is jabbing little swiss army knives into my elbows, knees and wrists.

In any event, my PCP never ever mentioned Lyme and I certainly didn't think of it either. I'm not from the NE and it's just not something I know about or ever think about, other than being aware that tick bites are to be avoided. It was the neurologist I saw for the migraines who mentioned--in April--that they test all new-onset migraine patients for Lyme. Of course I put it off until the last week of NOVEMBER because I didn't think anything of it. Yes, I am an idiot.

So one positive test and then, as if i needed more confirmation, another set of positive re-tests later, it's safe to say it's definitely Lyme. I started abx last Friday and I'm feeling like CRAP today (killing the bacteria makes them release toxins that make you feel WORSE before you get better. Merry christmas! ;) )

I'm not worried about the health part. It is what it is and it will work itself out. My question is about my GARDEN. My obsession. I feel betrayed by my woods. Really. That sounds dramatic, but I'm angry with my land. I put so much energy and time and love into my surroundings, and for the payoff to feel like this... I don't know what to do. I am SO careful out there, and I still managed to get this. There's no reason it couldn't happen again. Do I swear off all my groundcover-wading and consider hiring help moving forward (ugh!!! no!!!) I don't want to, but I'm afraid not to. Do I hire someone to spray for ticks? Is that effective or just costly baloney? Or even potentially dangerous to ME (chemically) and my kids? I hate having to think about these things. We bought this house 2 years ago almost entirely because of the property. I love the property, er... I loved it. I would be lying if I said I didn't look out my windows and feel a bit differently now that I've learned about the lyme. I'm not going to move or anything rash like that, but I have to find a way to deal with this in my head. I don't want to look out my windows and feel a sense of dread and betrayal. I don't want to be afraid to go out there and get dirty. I can't imagine tasking someone else with my garden and yardwork. That's mine. I know what I want done out there and I'm the only one who can take care of it :)

Sigh. I need a pep talk. I don't want this to change things, but it kind of does... I'm starting to get plant catalogs for next spring now and I'm feeling so conflicted. What do I do? What would you do?

central, NJ(Zone 6b)

Sorry your going thru it, I know a few people with Lyme's are they are doing great after meds starts working

If you're so inclined you could get some guinea hens since they eat ticks, keep grass mowed cause they like hang out in tall grass, also a I know someone who is a landscape architect and she said to remove any barberry, they like to hang out in them because of the thorns no predators can get to them

I'm sure you did your research, wear light colors, and make sure you wear socks, I'd make sure to at least spray tick repellant around your feet and ankles cause that's how they climb from the bottom up

Thomaston, CT

I had sprayed my boots & socks....the tick got under my T-shirt, and wedged into my ribcage.....that bite triggered psoriatic arthritis that I've suffered with for 20 years.....since then, I've had many tick bites, only one with a bulls-eye.....other site reactions were just large, red, swollen doctor always puts me on meds because of my history....spray with Deet spray, & shower after gardening....check every bit of your body including can't let the ticks ruin your gardening.....

Nantucket, MA(Zone 7a)

sheameister. I am a many times bitten and recovered victim from those nasty buggers. DH too, plus he had a fierce bout with Babesiosis. Another nasty tick disease that is violent but quickly resolved if treated. My Lyme made it into an article in the New England Medical Journal years ago as my Lyme Titer was off the charts and I was suffering with severe neurological problems along with what you described so well as the Swiss army knife being jabbed into the joints. I had sever burning in my arms too and about everything else that some get except heart issues. I was hospitalized and had a spinal tape to help chart my issues. I also agreed to be a test patient case so I also had a series of many other medical and psychological tests such as a MRI and others done over many years to help with the study of Lyme.

I recovered from the first infection after being given many kinds of antibiotics both orally and intravenously that they were testing. But back then the tests were crude at best and the treatment a crap shoot. Now they have much better diagnostic tests and treatment. If you find a tick on you within 24 to 48 hours, you can be treated with one mega dose. I was so infected that my brain was functioning almost like I had Alzheimer's. I couldn't remember anything, nor could I finish a sentence and I had all my language mixed up, if I could remember a word. I called my only and dearest son, Giraffe instead of his name. I cried as I knew it was wrong, but had no idea what his name was at that moment. I was not to be allowed out alone as I was so confused that I might have just wandered into the road, nor was I allowed to use knifes or anything that was dangerous as I was such a space shot. Husband and son refer to my behavior during that year as "The Tick Thing" I don't remember much of it except that I was so happy when I finally realized that I wasn't crazy about all my symptoms and pain and that Dr Steere was going to kill all the spirochetes growing in my body. They did.

I garden like a fool without doing anything except when I garden I wear socks and light pants, and mostly long sleeve shirts, though not religiously. And I do a good check when I shower as soon as I stop for the day. Also I try to be aware of any place on my body that appears to itch and immediately check that area. I also take off anything that I have been wearing while gardening and throw it into the wash immediately upon coming inside for the day. I don't run the wash everyday but carefully try to isolate my gardening clothing by putting it into the machine for the next wash. But as I live in a place invaded by ticks, I know that I can get attacked when just standing by my car in my gravel drive as well as in our woods, or in the lawn or by one dropping off the dog when they come into our house. When we had a cat it was worse as the ticks never attached to the cat, like they do to our dogs. We found many ticks walking on our bed from the cat who liked to sleep on it during the day after being outside at night. I have been caught totally unaware until I get a bulls eye rash or not. I now just know after a while of experiencing the now known symptoms that something is wrong in my body. I never had the rash with my initial bit and have had only 2 other rashes while finding ticks attached to me many times besides those three times I had a rash.

Ticks are everywhere, but I now know Lyme is totally treatable. I was first treated by my primary care doctor until he sent me to be treated in Boston by Dr. Allan Steere who is the rheumatologist who first diagnosed and named it when he was a young doctor at Yale. He got great help from an observant and persistent mother in Lyme Ct who knew something else was wrong with her kids and many others in the neighborhood besides what had been diagnosed as rheumatoid arthritis and sought him out for an explanation. There is lots of controversy about Lyme. There are different schools of thought so let me state here that I am not a believer in the notion of chronic Lyme as I know when my body is infected and when it is not , so I am not taking antibiotics on a regular basis. Others do. Suit yourself. I supposedly have fibromyalgia and now take a daily dose of Lyrica to help with the pain. This drug has totally kept me from being bed ridden as I was when first inflected with it after recovering from Lyme, but there are people who have issues with Lyrica too. So again do what works for you. I don't fear the ticks much anymore and greatly wish we had less deer, rabbits and mice who are the real problem for the transmitting and being part of the life cycle of the tick. But I do get anxious for a few minutes when I find one on me. Creepy.

Finally My Pep Talk.....You need to think about ticks like cars. They are everywhere. But, only a very few are likely to bump into you during your whole life, if ever, and mostly those episodes are just a mild and annoying inconvenience that result in a quick repair or just a tiny bump in the road of life. I had real fears for a while too and stayed away from the gardening, but the need to play in the dirt won. You garden girl! Best Patti

Here are albums of our garden....look closely and no doubt you will find hordes of evil ticks, but more beauty in all the flowers .

Milton, MA(Zone 6a)

Patti, your garden is always beautiful.

Nantucket, MA(Zone 7a)

Thanks, Not the few years when I was dealing with Lyme and my fears of working in earnest outside. But I won as did the garden. DH and I planted over 4000 bulbs last weeks so our spring garden should be another good explosion of color. I fear I am running out of real estate. Hope your world is good. Patti

Westbrook, CT(Zone 6a)

Sorry to hear of your bad experience with Lyme disease. Those of us who garden within shouting distance of Old Lyme have reconciled ourselves to cover up even on those hot summer days, and sometimes even that doesn't work. I hope you can learn to love your land again, after all the features that make it attractive to deer also make it attractive to people.

Thomaston, CT

Good description of Lyme .....stabbing in the joints.....I also had kidney pain & loss of balance.....I don't know how I taught.....I remember in the evenings having a hot water bottle, that I kept switching from place to place while trying to correct papers.....and cook dinner...& do the laundry....& clean the house.....

Nantucket, MA(Zone 7a)

Robindog, I didn't have the kidney pain, yikes. How about not sleeping, horrible headaches, no strength in hands or arms, night sweats and fevers and always the exhaustion? Not fun, but thankfully treatable. I was working then full time with a young son, but self employed, so not like you trying to jungle my family with a job that required regular hours like being a teacher. I used a heating pad.

I don't know how my bookstore survived those dark times, except via a very supportive staff and DH who picked much of my workload aside from his full time work running the Boat Yard. My staff carefully monitored my work as god only knows what strange books orders I was placing when I tried to work some everyday. Pretty fuzzy times. I tried to keep up with the accounting too, which DH monitored as I was a mess. I had an office at home which was the main reason the store survived and everything was computerized so that helped immensely. DH helped me do all the entry work so the bills could get paid.

But the garden work went down the tubes as I had no physical strength or desire to hang outside with the ticks for quite awhile until I felt the urge to go out and smell the roses again. That was the only period since starting our gardens that we hired some help to keep all our beds from becoming a giant weed patch though we had them do minimal maintenance and no planting. We gave up having a veggie bed for quite a few years too. Sad situation, but all got better once I was over this first and only really horrible episode of Lyme. Since then having new infections is a piece of cake or at least not a big deal. When I got cancer a few years back, the first thing I did was to order plants and bulbs....lots and lots of them, as I knew that our garden is my joy and that no medical situation is going to rob me of it until my last breath. Cancer gone, and garden is more glorious than ever!!!!! Patti

Milton, MA(Zone 6a)

YAY Patti!

Thomaston, CT

That's really awesome, Patti! I wasn't as ill as you were....this was 20 years ago, the Lyme tests were negative, but it was a bacterial infection.....I was on antibiotics for several months, once they realized I had a tick lodged in me....and the downside was I had a genetic marker for psoriatic arthritis, which the bacterial infection triggered.....was on prednisone until I developed osteoporosis....just like dominos....I will have to say, if I walk daily, I'm doing OK....if I don't walk, I stiffen up....but I can garden.....yippee!

Nantucket, MA(Zone 7a)

And besides admiring your persistence to lick the tick thing, I can cheer you today on as I know it is your birthday. Have a Happy and Healthy one. Patti

Pepperell, MA(Zone 6a)

I had Lyme a couple years back - heavy sweating, aching all over, could barely walk down the driveway to get the Sunday paper. My test came back negative as well, although I have learned most folks test negative for this and learn later that they did indeed have Lyme. According to a friend who's wife had a severe case that affected her brain there are two main testing labs here in MA. One facility always showed her negative while the other came back positive. It was the first question he asked when I told him I was being tested for Lyme - which lab are they using?

Fortunately my Doc was aware of the false negative possibility and put me on the correct antibiotics before the testing came back. Probably because they estimated I was had sweat out a quart of water just during the examinations. Was better in a week. Still go out and have become more vigil of the tick inspection after being outside although I still pull off around 20 a year, most are walkers, although some have been attached. If I'm not sure how long they have been there I head to the Doc's office. If you can get them off within 24 hours you should be ok.

Thomaston, CT

Thanks, Patti! Yes, Bill, you have to get them off right away......the one that caused all the damage was under my rib cage.....I didn't notice it for a few doctor couldn't get it out....glad that your Lyme was doctor always thought I had Lyme, but the testing 20 years ago wasn't good.....My Irish wolfhound had it a few years before that....I had to ask the vet to test for it....Uconn was doing some testing at the time, but not many vets were looking for it.....

Northport, NY(Zone 7a)

Oh gosh. I hadn't checked this string in a couple weeks due to the holidays and whatnot, so what a pleasant surprise to come back here today.

Patti, thank you! Your words are exactly what I needed to hear. I will be back out there! I don't really have a choice, do I? :) And you're right about not even needing to be in the garden to encounter a tick. They're everywhere here too. What am I going to do--never venture outdoors again?

I'm on week 3 now of my doxycycline. Things started getting a bit better FINALLY just after Christmas so then I (stupidly) worked out and it's been down hill from there. I probably should hold off on that for a bit. :) The joint pain had been starting to ease off after about 2 weeks on the abx, but following a VERY low key, mostly isometric, pilates-type DVD workout, I woke up with joint daggers all over again and I ran a low fever again last night. My elbows and wrists are killing me as we speak. GAH! I am beyond ready to be done with this. I don't go back to the rheumatologist until Jan 11--the last day of my 4 weeks of doxy. I have no idea what he thinks should come next. I'm not convinced that 4 weeks of low dose doxy will kill this... but I agree with you, I have a very hard time believing that one has to be on very long term antibiotics to kick this, and I have no intention of traveling out of state to find a "lyme literate" MD in order to get adequate treatment for this. We live in the tick epicenter of the universe; there simply have to be mainstream doctors out here who are competent in treating Lyme. I'm holding out hope that I've got one now, but I just don't know. I'd be lying if I said that the things I read online don't freak me out a bit... but I'm all about data and objectivity. I'm actually a healthcare researcher by profession with 30+ publications--including first-author JAMA papers--to my name. So I'm trying to balance the hysteria out with a heavy dose of facts and science... but it seems even that is strangely lacking when it comes to Lyme. How frustrating is it that something so incredibly prevalent out here is so poorly understood?

Thanks for the comments, everyone. They definitely help me feel less alone in this and give me confidence to get back out in the dirt once I feel up to it. Sadly, the patio I started last fall in our "ancillary" side yard never did get completed... and the fancy leaf shredder i scored on Craigslist still sits unused in my basement. All those nutrient rich leaves still sit in the space I had cleared around the patio for a new garden bed... I'm afraid I won't be getting to the whole newspaper/shredded leaf mulch thing anytime soon. But you definitely make me feel like I'll get to it eventually :) And better late than never, right? Thanks, guys.

Nantucket, MA(Zone 7a)

Hope you have a happy and Healthier New Year and NO TICKS. Patti

(Pam) Warren, CT(Zone 5b)

I gardened in Southampton for years and escaped Lyme's because I am mildly allergic to the bite itself and have always discovered the little buggers early enough. In CT, in spite of exactly the 'tick suit' you describe and showers immediately after coming inside, I found at least 1 on me somewhere every weekend. Then DH found 2 on himself several days after being in the city. That was it. Now we get the property sprayed 4 times a season. It works. I don't bother with all the details any more, just spray wrists, back of neck and ankles with deep woods Deet for Mosquitos etc, and have seen nary a tick for 5 years.

Good luck, I know Lyme's stinks.



Milton, MA(Zone 6a)

Happy New Year, Pam!

Sherrie In, NH(Zone 5a)

Bear with me. First your question is about gardening but I am going onto Ticks.

I got bit by a tick 20 years ago, it was when Lyme was coming up the Eastern coast. I can remember. It was January and warm and very unusual in NH. My husband and I went outside and laid with t-shirsts on, on a rockwall. A couple of days later I screamed and he came and pulled a Tick off me.

We got the tick in a container and I had to ship it to the University of New Hampshire. It was evalutated as a Wood Tick, not a Deer Tick that was carrying the Lyme Disease, as of that time. The professior said I did not need to go to get treatment. I got a RASH it was like 4 inches round, raised, red, rough, dry, scabby like. It took WEEKS to go away.

If I had all the visual symptoms, Why did I not get Lyme Disease? Because of a wood tick bite. Why was it out in January? I saved the paperwork and 1 year to the date my cat had a red Deer Tic on her. She did not have to be treated as it had not fed. Still shaking my head.

Thomaston, CT

Ticks carry other bacterial illnesses, not just Lyme.....I hate to spray myself, but I do....just too risky for me not to spray....

Pepperell, MA(Zone 6a)

interesting - there is a new desease carried by deer ticks - see the article link below - hey discuss an 80 yr old NJ lady who recovered and is now building a rock wall :)

Thomaston, CT

The article was in our paper today....great,,,,another tick disease!

(Pam) Warren, CT(Zone 5b)

Yes, I saw it too. Sounds much less serious once discovered and treated-- but oh, all those poor people with symptoms told they didn't have Lyme's, must be psychosomatic!

Nantucket, MA(Zone 7a)

Not good news. But good to be aware of it. Thanks, Patti

Salem Cnty, NJ(Zone 7b)

Just found this thread. Totally agree with bbrookrd's comparison to a car. Never having experienced it myself, I can only imagine al the symptoms. Must remain vigilant. Thanks for all the reminders of precautions. Happy gardening!

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