Archive for the 'Lyme' Category

What I’ve Been Up To….

Howdy everyone.

I have been very busy (and poor Barnum has been very bored), working on a project that is close to my heart. It’s even is relevant to my theme of Lyme and MCS awareness posts for the month of May, because it’s about a friend with Lyme and MCS!

In the past week or so, I created (okay, I had some help) an entire blog!

No, not just a post, a blog. And it has nothing to do with dogs,* if you can believe it!

But it does have to do with me finding real pleasure in being able to do something worthwhile for a friend, for finding that there are still challenging tasks I can do from bed, and realizing that there are still good people in the world. And, for once, to feel like I can do something when a friend is struggling.

It’s also been nourishing to connect to other people who create beauty (whether with a camera, bits of metal and beads, fabric, or words).

To learn more about it, please visit my other AfterGadget blog.

This is the direct link to the post about what I’ve been working on and why it means so much to me.

Thanks so much for your support! Please spread the word (blog, tweet, post, forward, “like,” share on FaceBook, etc.)!

More another time about Barnum, birds, squirrels, and how to tick-check your dog!

-Sharon, the muse of Gadget, and Barnum (the very patient SDiT)

*Alright, it has a little to do with dogs. L-Squared of Dog’s Eye View donated some lovely notecards of her Guide Dog, Willow, and there’s also something about dog training consultation….

Lyme Awareness Tip for Wheelchair Users

Here’s a quick post in honor of Lyme Disease Awareness Month. I hope that anyone reading this who has friends or family who use chairs will pass this along to them (or post this info on boards or forums where there are a lot of wheelies).

Virtually all Lyme disease prevention information includes a tip along the lines of . . .

Tick check yourself after coming in from outside.

The link above says this, and I included this tip in my Lyme Awareness post last May. This is a good tip for the general population, but it is slightly misleading for those of us who use wheelchairs when we’re in the great outdoors.

First, a very brief primer on how ticks come to attach themselves to you or your dog or cat or horse. They do not jump, like fleas, or fly, like mosquitoes. Instead, they crawl on the ground or up the stems of grasses or twigs or leaves, and they wait for a ride/meal to come by.

When a leg or hoof or paw brushes past the blade of grass or leaf they’re clinging to, they grab hold of the cloth or fur, and they’re on their way to their blood-meal. They climb to a good spot, attach, and start their nasty blood-sucking ways.

This is why Lyme prevention materials always say to wear light-colored long pants and sleeves, to tuck your pants into your socks, and to check yourself and your animals as soon as you come inside. Because you want to see the tick, ideally, before it has a chance to get from your clothing to your skin and then under your skin.

The problem is that ticks don’t discriminate between flesh, fur, and fabric versus plastic, rubber, and metal. If it moves past them, they will latch on.

Ticks are perfectly happy to grab hold of a wheel (on a bicycle, wheelchair, or stroller) or any other part of a wheelchair as you make your way — walking the dog, or getting to your van, or preparing to putter in your garden.

This means that you can bring ticks in on your wheelchair, and check yourself when you come in, and find no ticks. You think you’re “safe.” You’re not.

I have, on more than one occasion, come inside, thoroughly tick-checked my body and clothes, found no ticks, and then, hours later, discovered a tick crawling up my leg or on my shirt. Eww.

The reason this occurs should be obvious by now: it often takes the ticks a while to climb from the chair onto the person in the chair.

Here’s another example. Betsy and I always tick-check Barnum and one-another before Betsy goes to sleep. Barnum and I stay up later. We usually have a last training session, I do my infusion and work on a blog or email, take Barnum out to pee (sometimes including a play session in the yard), and then I plug in my chair to charge overnight, and we go to sleep.

My habit is to put my empty water bottles, my pillbox, my dinner things, and my “to do” list for my PCA on my chair next to my bed right before I turn in. In the morning, at the beginning of her shift — while I’m still asleep — my PCA will clear everything off my chair so that my pills, water, food, etc., are ready when I wake up.

Earlier this week, after Betsy had gone to bed, I took Barnum out for his last pee of the night, plugged in my pchair, and went to sleep. The next morning, my PCA told me that she found a tick crawling on my pillbox when she came in to get it. Eww.

The solution is pretty straightforward.

If you are not a person with a fatiguing illness, and you feel physically capable of doing two tick-checks in one day, the best course is to tick-check yourself when you first come in to nab any ticks that have already made it onto you, and then a few hours later, tick-check yourself again to make sure none of the bugs have transferred from your chair onto you in the interim.

However, most wheelchair users — I among them — have limited energy. If you only have the energy and ability to tick-check once a day, it is better to wait a few hours after you have been outside, and then tick-check yourself thoroughly.

You will note that I am not encouraging wheelies to check your chairs for ticks. This is because there are so many parts of a powerchair that are impossible to check that it simply doesn’t make sense. I have tried to check my chair and still found ticks on it or myself later. Eventually, I had to give it up as a bad job. There is too much surface area, and too many places for a blood-sucking critter to hide.

My daily use powerchair. Gray vinyl captains seat with pocket in the back, beat-up black foam armrests, single post connecting seat to base, which is candy-apple red, with gray front-drive wheels and rear casters, and a black footrest and anti-tip wheels in front. Barnum is standing with his front paws on the footplate, looking into the camera.

Just look at all the places a tick could be crawling on this thing without me knowing it!

(Funny note about this picture: I was planning on taking a picture of just the chair. But when I got out the camera and was setting up the shot, Barnum came over and put his paws on the footplate, standing just like that, and it was too cute to resist, so I took the picture. It’s sort of become a theme that even the posts that are not about Barnum, he feels he must be included in all pictures! For example, the same thing happened with my black-bottom pie picture.)

On a manual chair, it might be more possible — you’re not dealing with all those hidden parts in the undercarriage. So, manual wheelies, I live it up to your discretion whether you think it worthwhile to check your chair as well as yourself.

One final note: This information applies to wheelies the world over. Many falsely believe that Lyme disease is an American disease, or a disease of the Northeast or the East Coast of the United States, etc. Sadly, this is not the case. In fact, there are parts of the world (such as certain parts of Europe), where chronic Lyme disease is recognized and treated much better than in the US. On the other hand, in other countries — such as Canada — the myth persists that Lyme “doesn’t happen here.” I know enough Canadians with Lyme to know that’s not the case.

Lyme and tick-borne disease — and the ticks that carry Lyme and other infections — are a global problem. Lyme and other tick-borne diseases affect people not just in every state of the Union, but in Canada, and every continent, including South America, Europe, Asia, Africa, and Australia. The strains vary somewhat, as the species of ticks vary slightly, but they are all in the same family, and ticks attach themselves to humans, birds, dogs, other mammals, marsupials, etc., the same way the world over. (For more information on this topic, please read the opening chapters of Steven Harrod Buhner’s Healing Lyme, which gives an excellent scientific history of the species of tick and pathogens that cause Lyme, the world over.)

For everyone living or visiting where the ground is not completely covered in ice or snow, it is tick season. Please check yourselves and the other humans and non-humans in your household every day.

-Sharon (recovering? chronic Lymie), the muse of Gadget (chronic Lymie), and Barnum (so far, uninfected), SDiT?

Hospital Access FAIL

This is not what I want to be writing about. I want to be activisting about the horrifyingly biased, unresearched, and clearly bought article the Chicago Tribune published recently saying that chronic Lyme disease doesn’t exist. (I am not linking to it because it does not deserve any more attention than it has already gotten. The wankers.)

As you can tell, this has me pissed off, because this nonexistent illness has been fucking with my life a lot this week (as well as for the last few years). But for right now, let’s focus on this week. Let’s just focus on the last couple of days.

There has been vomiting. There has been severe pain and immobility. There has been vocal-cord apraxia — the inability to produce speech — which is a prominent player in my story. There have been many nights where I barely slept at all, such as last night, when — after I recovered from violent puking — I slept from 3:45 AM to 5:00 AM, and then later from 1:00 PM to 2:30 PM.

This second round of sleep — if you can call it that — was filled with nightmares of me trying to reach my doctor or communicate with my visiting nurse, and it all going wrong. I repeatedly woke with a gasp and my heart pounding. Which was all true to life.

So, what, you may wonder, is this all about?

First part of background: I have a PICC line. I am very grateful for my PICC line because it is part of what saved my life when I was being eaten from the inside by bacteria, parasites, and other microbes, otherwise known as Lyme disease, babesiosis, and bartonellosis. It has been part of the treatment that has vastly improved my quality of life and my hope for a healthier future.

It’s also a pain in the ass that I’ve lived with since August 2009. However, when I had to stop treatment for a month, I backslid in a serious way, and I feel like if I could safely stay on my antibiotics for the rest of my life, and they would continue to reduce my symptoms, it would be worth it, by a long shot.

The second piece of background: The medication that I infuse through my PICC is called Rocephin, which is an antibiotic. The good part about it is that I have tolerated it (which is often not the case with medications), and that is hasn’t messed up my liver (another frequent medication problem), and that it has worked — in other words, it has helped me get better.

Yay! The only major concern I had is that long-term use of Rocephin can cause gallbladder sludging or gall stones. To try to prevent this, my doctor has me on a schedule of infusing four days in a row and taking three days off, each week. The time off is to give my gallbladder a chance to rest. So far, I hadn’t seemed to have had any gallbladder issues, which was good, as any time in a hospital is really deleterious to my health. When I had to get a liver sonogram a couple of years ago, it set me back several months of functioning.

I’m not going to sugar-coat it: PICCs require a lot of upkeep. Small things can go wrong, and big, life-threatening things can go wrong, and a lot of stuff in between.

This is actually my second PICC. The first time I got one inserted, it was planned far in advance. Because it was planned in advance, I could set up the accommodations to my disabilities I needed. Since my voice often doesn’t work, especially in situations where I am having increased bodily trauma, such as the chemical exposures and exertions attendant with a hospital visit, I usually request an American Sign Language interpreter (ASL terp) for medical appointments. This allows me to communicate much more safely, fully, and effectively, especially because I wear a mask that covers my mouth and prevents others from lip-reading me.

It turned out to be very important to have that terp there that day because I was immobile and covered from head to foot except a tiny portion of my face and my left (non-dominant) hand, so communicating would have been a challenge in the best of circumstances. The interpreter was outstanding. She was working without syntax or grammar — which are read on the face — and with only my non-dominant hand signing.

Six months later I needed to have my PICC replaced because it was blocked. There was no interpreter available, but Betsy usually understands me very well, and her presence alone would be a comfort, so she got dressed in scrubs and came into the operating area with me. The first PICC insertion had taken half an hour. We expected this one to go as well. Instead it went TWO AND A HALF HOURS because my veins went into spasm, and they had to keep trying new veins, after prodding a spasming vein for an hour to see if that would help it relax. (It didn’t.)

And, Betsy only understood about one-eighth of what I said, because she is used to lip-reading me, which she couldn’t do with my face covered. It was pretty traumatic for both of us.

Yesterday, I was doing my infusion, as usual, when I noticed that it was hurting very mildly. I am in such severe pain everywhere on such a chronic basis, I didn’t even pay attention. After infusing, I always need to flush the line with saline and then heparin (a blood thinner that keeps the line clear). Each time I flushed, it hurt very noticeably. This is not normal. It’s never happened to me before.

I called the visiting nurse association (VNA) that is in charge of maintenance of my PICC and described the problem. I expected the nurse supervisor to ask me a bunch of questions to try to determine what might be going on. Instead she said she would have my nurse (who comes every week to change my dressing), call me.

Nurse called. She asked one question, and didn’t ask all the others I thought she would (to assess, oh say, if I was going into septic shock or had a deep-vein thrombosis) and then she said she’d come take a look tomorrow. She said not to flush the line or infuse until then. She also said she’d talk to my doctor the next day.

I wasn’t happy about this because (1) that meant waiting possibly 24 hours for any idea as to what was going on, and (2) my doctor doesn’t work on Fridays. I told Nurse this. She ignored me. I know from experience it can be difficult to reach my doctor when she’s not in the office. And she has no other backup; she is the sole doctor in her practice. If you need to speak to her off-hours, you have to call her personal cell phone, which sometimes she answers and sometimes she doesn’t.

“We’ll reach her through the on-call service,” Nurse said. I gritted my teeth. This was not the first time we’d gone through this situation, but she clearly wanted to be done for the day, and I didn’t have much choice in the matter.

Today, when Nurse did not call to tell me when she was coming (as she always does and had said she would), I called her. She sounded annoyed. She told my PCA (because I couldn’t speak), that I should try a saline flush and see if that hurt. If it did, I’d need to get the line pulled. If not, she’d come over later. She said she’d call in a few minutes to see how the flush went. I flushed, and it didn’t hurt like last night at all, but afterward, it did sting a bit, which is, again, unusual. Then we waited for her to call back, which she didn’t.

So, we called her. We had a pointless conversation, interpreted by my PCA because I couldn’t voice. She said she’d call Doctor and call back. I wanted to tell her Doctor doesn’t have office hours on Fridays, but I had to type whatever I wanted to say so my PCA could read and relay it from the computer screen, and it seemed like too much trouble.

An hour passed, we called her again. Nurse hadn’t heard back from Doctor. Big surprise. I told her again that Doctor is hard to reach on Fridays, and Nurse said that was okay, she’d reach her through the answering service or speak to the on-call doctor. I tried to get across that Doctor is the on-call doctor. The only doctor in her office.

While all of this is going on, Betsy and I are trying to figure out: Does she need to leave work? Does she need to cancel her plans for the evening (that are very important to her) to take me to the ER? We were left hanging, and Betsy was not happy about it, because so many other people would be affected if she had to rush home.

Another issue came up. I started to ponder why I had been doing all this vomiting lately, which is not normal for me. Why all the nausea, the bloating and gas? Was it more than my usual food allergy issues? Could these be gallbladder symptoms?

You already know the answer. I looked up gallbladder symptoms, and I have all the risk factors (really), and most of the symptoms. Now I needed to get a gallbladder sonogram, too. And I needed to communicate this to my doctor right away!

Eventually, at the end of the day, Nurse told me she hadn’t reached Doctor, so she couldn’t officially tell me what to do, but she’d discussed it with the nurse supervisor, and they felt I should go to the emergency room and have the line pulled. I have many reasons — particularly my MCS — for not wanting to go to the ER unless I’m really dying, to take that decision lightly.

I tried to reach Doctor myself, a few times — by email, by message on her office phone, by calling her on her cell, which is the number that the office voicemail gives out for medical emergencies but which she sometimes doesn’t answer. Finally, after my final conversation with Nurse, I called Doctor and she answered. I gave my full name and asked her if she’d heard the messages from Nurse and me.

“Sharon who?” she said. Not the kind of reception I was hoping for. I told her what was going on and that we’d been trying to reach her all day.

“You know Friday is my day off,” she said.

I said yes, I did know, and I’d tried to explain that to Nurse, but she didn’t seem to understand. Then she finally swung into Doctor Mode and asked me relevant questions: Was my arm red? Swollen? Hot? Was the insertion site painful to the touch? Did I have a fever?

When I said no to all of these, she said I didn’t have to go to the ER, I could just get my line replaced. I said I wanted to do it as soon as possible — ideally Monday — at the same time as I got the gallbladder ultrasound. She said she didn’t know if either were possible, but she would call the hospital on Monday morning. I had hoped she would call them right away, but I gave up.

I continued to read about how to heal your gallbladder at home, without having to undergo surgery for removing it, which would be disastrous for my health — both the surgery itself as well as being without an organ that helps detoxify my body. We MCS folks need all the filters our bodies can provide.

It was extremely depressing because pretty much all my other disabilities and health conditions — including dozens of food allergies and sensitivities, my PCA schedule (because they cook for me), and the way I eat to control my cholesterol — demand I follow almost the exact opposite way of eating. I really don’t know how I’ll make it work, but I’m trying anyway. Nobody’s taking my internal organs without a fight, dammit.

Then Doctor called again to tell me I had a 9:00 AM appointment on Monday for the ultrasound, followed by an appointment for PICC line removal and replacement. I’d have to check in at 8:45, and I’d have to fast the night before. Well, that was fine. I was so relieved.

I cried about how exhausted and scared I was to some friends, and then I realized I should try to book an ASL terp, even though it was almost certainly too short notice for them to have one available. I also thought I should mention the MCS and request fragrance-free practitioners, though, again, I knew that was unlikely.

I called the hospital and asked for a terp. Of course, when I was making this call, my voice was working, so I’m sure the switchboard operator was confused, but I didn’t feel like explaining. She looked up my appointments and said, “Oh, those were canceled.”

“What?!” I said. “Who canceled them? Why were they canceled?”

The operator told me that my file shows I need an interpreter, and they had called their one ASL terp to see if she could do the job, but she already had a job at that time, so they canceled the appointments. Without asking me if I wanted them canceled. Without even telling me they were canceled!

If I hadn’t called in, Betsy and I would have shown up at the time we had been told to show up for our scheduled appointments and — silly us! — expected that I still had those appointments. AUGH!

I told her that, yes, a terp was helpful, but it was more important that I have the procedures. “I need to go to those appointments!” I said. “Can’t you un-cancel them?”

She said no, she wasn’t in radiology, she didn’t know their schedule or which appointments they had or didn’t have.

“But you knew about my appointment being canceled and about the interpreter thing,” I said.

“That’s because we book the interpreters,” she explained. “But we can’t make appointments. Your doctor can call in Monday to make the appointments.”

“But then it will be too late!” I said.

She asked me the name of Doctor (my specialist), whom she didn’t know. Then I told her the name of my primary care physician, who is well-known at this hospital. She made an agreeable sound.

“What if I have someone from that practice — whoever is on call tonight — call in and make the appointments?”

“It’s after business hours,” she repeated. “You have to wait till Monday to make appointments.”

She added that the state agency that’s responsible for providing interpreters would provide a terp if I was coming in over the weekend, for an emergency. But since I was trying to come in for an appointment on a week day, they wouldn’t provide an interpreter.

There it is: Because the hospital couldn’t meet all of my access needs, it responded by denying me the medical care I need, without consulting me about my wishes or needs, and without even telling me that they’d taken this pre-emptive step.

If I were Deaf, the option of making do without a terp would likely be even more of a hardship (since I can hear/understand what’s being said to me in spoken English; I just can’t respond). I also didn’t need a relay or interpreting service to make the call, which I know from experience makes everything much, much harder and longer and more complicated.

Be-that-as-it-shouldn’t-be, I had to call Doctor again and apologize for bothering her in the evening on her day off again, but that the hospital had canceled both my appointments, and could she please call the hospital and make the appointments again. I also asked her to stress to the hospital that while I prefer to have an interpreter available, they should not cancel my appointments if they can’t provide one! Fortunately, Doctor was very nice about it.

So, assuming my symptoms don’t continue to mount and I end up in the ER anyway, very, very early Monday morning, Betsy and I will be packed and ready to go, waiting for a call from Doctor to let us know if she was able to book those same slots, in which case we’d need to haul ass up to the hospital. Or if we were going some other time.

I could just vomit. But I hope I don’t,  because I’m getting tired of that.

stuck day

today is a stuck day. i haven’t had one in a long time. i thought i was done with them. that’s lyme for you. once you think you’re doing better, it returns and kicks your ass.

you probably can’t tell today is different from my writing, except that i’m not using caps. if i tried to use caps, i wouldn’t be able to write/post. that’s because all i can move right now are my hands, my facial muscles, some minor head/neck movement like small nods, and the lower part of my right arm. with great exertion and pain, actually, i can move more of both arms, but that’s only for necessities, like signing, typing, positioning. i’ve also reread this later when i was more functional and corrected the huge number of phrases that made no sense.

here’s what a stuck day is like: i wake up and think, “oh, i have to pee.” i realize that i’m in a lot of pain and feel weak, and the idea fleetingly crosses my mind that i might need help to get out from under the covers. “nah,” i tell myself. “don’t be such a drama queen. once you get going you’ll be fine.”

So (oh look, i did a caps! the drugs are kicking in!), I roll onto my side, and i get stuck. i can’t get the blankets off me. i can’t even move my arms or my legs, i realize. i can’t talk. ohshitohshitohshit.

then, i have to find my call button. this is the doorbell i wrote about in a previous post. no, i’m sorry, i can’t put the link in right now. maybe later, when i can move. [note: i’m doing a bit better now, so i’ve put in said links.]

anyway, i need to hit the button which is now loose on top of my overbed table. with great effort i get my left hand up onto the table, and it crawls around like a crab, searching. i hit my “clik-r” clicker button, and i hear barnum pop up. sorry buddy. bad trainer. no cookie. eventually i find and press the doorbell button. thank god!

here’s the problem: i’m lying on my side with my back to the door. i can’t talk or really make any sound. i can’t move at all except my left hand. so when i hear carol, my pca, open my door, i know she is waiting for me to say something or indicate something. and i appear to be all snuggled up, asleep. i try to sort of flap my left hand, opening and closing it, hoping she can see it from where she’s standing, but apparently she can’t, because I hear the door shut. DAMMIT!

“well,” i think, “i’ll just have to ring again. eventually she’ll realize i wasn’t ringing by accident in my sleep.”

yeah, right. cuz i can’t find the fucking doorbell button this time. i press the clicker again another couple of times — barnum’s really curious as to what’s happening now — and i can’t find the button. through tremendous effort i pull myself up a few inches to better search the table and find the button. i grab it — not letting it go anymore today — and ring it repeatedly.

i try to roll onto my back so i can communicate better, but can’t. fortunately, betsy comes to the door. yay! I had assumed she was asleep. she asks if i rang. i sign “yes.”

she asks what’s going on. i sign, “stuck,” which is a v-hand shape, finger tips on either side of adams apple.

her sign is rusty. she can’t remember that word.

“is it your heart?” she asks.

I shake no, then fingerspell S-T-U….

“You’re stuck!” she announces.

Relief. Nod.

“Do you need to go to the bathroom?”

Affirmative.

Thank god, betsy knows the drill. carol does, too, but she has back issues and is getting over the flu, and betsy understands me when i’m nonverbal better than anyone else does. also she’s strong as a power-lifter. she pulls the heavy blankets off me. she pulls my legs toward the side of the bed. she moves my pchair into position. she grabs my hands and pulls me into a sitting/slumped position. I take a moment to rest, then she lifts me onto the chair. i’m no lightweight. i’m always surprised how strong she is.

barnum is overjoyed to see betsy — and me out of bed — and he throws himself between us, wriggling, wagging, kissing, pressing against us. he is soaking up betsy’s attention primarily, because she’s more capable of good butt-scratching than I am. i ask her to stop so i can give barnum some attention, have him just focus on me for a bit.

refreshed by puppy love, we get back to business. i take the call button with me to the bathroom. once there, betsy picks me up off the chair while i pull down my pants (fortunately the muscle lock has eased enough now that I can do this), and i pee . . . for a long time! (you know the scene in A League of Their Own when Tom Hanks pees endlessly and Mae/Madonna takes out a stopwatch to time it? it was like that, except i wasn’t all hungover and gross.) we chat a little, mostly consisting of me mouthing/signing, “this sucks. why is this happening?” and exchange more dog love. Betsy helps me back onto the chair and then settles me in bed (without the quilts, which are too heavy, and even when i’m doing better, could immobilize me just by their weight alone). i just keep my light organic cotton sheet and blanket.

then she leaves me to go do other things and carol steps back in. my first priority is getting pain and muscle relaxant meds in me, so I can function better. i do a lot of mouthing and miming to get across what i need. carol and i get my laptop computer open and readjust my position, overbed table, and screen so i can communicate with her by typing.

one of the worst parts about stuck days is when they are apparently caused for no reason. i have no idea why today i’m doing so much worse than yesterday. i don’t know if this is my fall crash, and now i will be wrecked for weeks or months to come, or if this is just a blip. i don’t know if this is a result of the new Lyme treatment drug i started Thursday. fortunately, i am too exhausted, painful, and crappy feeling to care much about what it all means. i’m just focused on getting through, minute by minute — or actually, task by task. i feel relief that i have carol and betsy here to help me. it feels so much better to have peed and have the right bolsters supporting me in bed. writing this blog gives me something to occupy my brain, other than worrying what the cause of Mystery Stuck Day is and whether it will stretch out into weeks or more from here.

(the meds are really kicking in now, which is good because i can move better and feel less crappy. but it’s bad because i took them on an empty stomach, so i’m getting sleepy and dopey, and i want to finish this blog before i go back to sleep.)

several times since waking up, i have missed Gadget so bad it was a physical ache. if i’d had the energy to spare, i would have cried. but that would have wrecked the small physical gains i’d made, and i don’t even think i have the lung capacity for deep breaths, so i just locked those feelings in. in my heart, i was crying. it’s 20 days till the anniversary of his death, and i feel so heavily the weight of his absence today. he could have helped me transfer — to and from the bed, chair, and toilet. he could have gone for carol or betsy so i wouldn’t have had the stress of not being able to indicate i needed their help. he could have carried messages to them telling them exactly WHAT i needed. he could have opened my door again and again so that i wouldn’t have had to endure what i did to find the call button the second time.

the only “help” barnum provided was licking my face a LOT. i certainly appreciated that, even more than usual, but a little emotional boost and distraction only gets you so far on a day like this.

there’s also the hindering Gadget would NOT have done. (For the record, Jersey wouldn’t have helped me much on a day like this, because she was trained and worked when I was much more functional, but she also would have been very easy — no demands.) gadget wouldn’t have jumped up with his forelegs landing on my legs after i was back in bed, causing severe pain. he could have let himself out to pee and then come straight back in. he wouldn’t have stepped on my burning feet when i was sitting on the toilet. and then. . . .

when carol left me after i was resettled and typing this post, barnum started The Barking. Lately, once a pca (especially carol, his favorite) leaves, he tries to demand their return. after all, i am Boring Lady, stuck in bed, not playing or giving love or attention, while he could be following carol around the kitchen, watching her prep my meals. hearing lovey-dovey talk. getting rubbed behind the ears. etcetera. so, the second they leave my bedroom, he sits at my door and barks.

which is why the pcas all have to ignore barnum until i get up for the day. but i am still dealing with the extinction barking while barnum tries his damnedest to change my tyrannical rule.

lately, i’ve been dealing with this by working on “bark” and “quiet” with him, but being nonverbal, i couldn’t say quiet. HOWEVER, having learned from the past, he knows 3 cues for quiet: ASL for quiet, the word “quiet,” and the sound, “shhhh.” I taught, “Shhh,” because it’s a sound i can make even when i can’t speak. the ASL for quiet requires lifting hands to mouth height, which I can’t do right now.

so, after he has started the very loud, very sharp barking, it occurs to me that i can actually do something about this. i try to call him over to put his front end on the bed near my upper body, but he really only knows all the many ways i have of telling him “off,” for all the times he tries to get on the bed, because normally he wants on and I want off. of course, today i am patting the bed and making kissy noises and he just stands there, waiting for me to make my meaning clear. I can’t communicate “up” nonverbally. something to remember for later: need to teach signed cue for “paws up!” but i have my clik-r, which, despite its other faults (not my preferred clicker), is good for a day like today for two reasons:

  1. it takes very little pressure to depress the button, so even on a weak day, i can usually manage it
  2. it’s very, very quiet. barnum has excellent hearing, so he can hear it even if i click during one of his ear-splitting barks.

fortunately, i always have treats close to hand, so i click and treat for a silent moment. then we start practicing “shhh,” which goes well. he’s bored, and now i’ve given him something to focus on. occasionally i throw in the cue for “bark,” just to keep things interesting.

i am having trouble pitching the treats onto the floor, so i hold my open hand, palm up, on the bed, a treat on it, and barnum takes it that way. much easier. also, interesting note: he was ignoring most of the treats i threw on the floor, because they weren’t “good enough.” But when i offered them in my palm, he took them. could it be the energy expended was not equivalent to the value of the treat if he had to chase it? Or that, love-bug that he is, the contact involved in taking from my open hand added value? or that he liked the chance to “eat off the bed” which he normally isn’t allowed? the novelty?

at any rate, this gave me an idea. i do want him to learn to have paws/front up on the bed when i need his help, when invited, but not to have any part of his body ON my legs or feet — or other body parts — as that’s too painful. so i moved my hands back, closer to my body, for treating, and he jumped up and settled his torso parallel with my legs. actually warmly just barely touching them. felt good, physically and emotionally. perfect.

then i c/t him for making eye contact, for being quiet and still, and started shaping him to rest his chin in my palm. i mostly used luring. usually i try to use targeting or shaping more than luring, but if there’s anything a stuck day teaches, it’s that you use what you can. when i offered the treat in my palm, i’d click when he put his chin in my palm to eat the treat. i did this many, many times. eventually, i pretended to put a treat in my palm, and when he went to get the nonexistent treat, i clicked for contact and treated in my palm. c/t for that, continued. sometimes actual treat in palm, sometimes luring with motion that suggested treat. after a while i shaped the beginnings of a chin target in palm.

as his eye contact got more frequent, i started introducing my hand signal for eye contact, which is ASL for “look into my eyes.”

it felt really good to be accomplishing something when i was able to do so little. i had gone to sleep with all sorts of schemes and plans to work on recall remediation, using the great outdoors and Premack principle stuff i’ve been learning on the training levels list, because barnum’s recall (meaning, coming when called) ranges from great to eh to abysmal/nonexistent. but today’s physical and communication issues put the kibosh on that.

sometimes, actually, it seems like the best training occurs without plans, without grand expectations, but just by using my instinct, my thumb on the raised clicker button, and whatever the dog’s willing to offer. life with disabling chronic illness is unpredictable, and as wheelie catholic put it in a blog recently, that’s the thing about access — it isn’t a problem until it is. much the same as with everything with a severely fluctuating disability — it isn’t an issue until it is.

suddenly, nothing could be taken for granted, and it forced me to get back to the fundamentals of clicker training: see what the dog is offering, and shape it using just a click and some food. no target sticks. no body movement. no voice. it granted me a great feeling of power and control, of communication and making things happen, on a day when i otherwise was pretty well powerless and struggled to make myself understood by the people around me.

i still missed gadget terribly, because we already had a working language, and because he could have actually helped instead of just offering a challenge to overcome. On the other hand, i did tell barnum’s breeder i like a challenge. be careful what you ask for.

Please comment, if you feel inclined.

-Sharon, Barnum, and the muse of Gadget (and Jersey)

One Lovely Blog Award

I was absolutely delighted to get a note the other day from Nessie, the blogger at Lipstick, Perfume, and Too Many Pills (a sick girl’s quest for normalcy) telling me she’d honored me with the One Lovely Blog Award!

Here it is:

One Lovely Blog Award

Award and Art by Sara Faghani

Thank you, Nessie! Please visit her site and check out what she says about After Gadget and the other blogs she named.

The award was created in December 2008 by Sara [access note: following link automatically plays music] of Works of Art by Sara.

Here are the rules of the award, according to Sara:

1. Add the logo to your blog.
2. Link to the person from whom you received this award.
3. Nominate 7 or more blogs.
4. Leave a message on their blog, letting them know they are “One Lovely Blog”!

This is a terrific opportunity to point you to some fabulous blogs. I was afraid all my faves would already have been honored, but lo! ‘Tis not so! I am thrilled to be able to give back a bit to these blogs that have given me so much. It’s also been a lot of fun to stray from my usual topic of life with (and without) dogs.

Before I give my list, some brief explanation of how I picked. Most awardees say to pick blogs that haven’t already received the award and that are “recent discoveries.” Since I only started reading blogs around the time Gadget died, all blogs are recent discoveries for me!

I’ve noticed that others who give their picks often tend to pass the award on to other blogs with similar themes, e.g., Sara named other art blogs, and the blogs who led to mine were mostly disability or chronic illness blogs.

While I am not intentionally going out of my way to choose blogs different from mine, I decided to resist the internal pressure I felt to pick, for example, other assistance dog blogs or “non-controversial” blogs. I want to honor the blogs that I think are truly unique and well written, regardless of topic. That’s what I mean by “One Lovely Blog.” Not necessarily “lovely,” as in “beautiful” or “sweet” (though a couple of those are represented), but as in “Damn, I LOVE this blog!” These blogs give something special to the blogosphere that I haven’t found anywhere else. As you can see, my tastes are eclectic!

Accessibility of these blogs varies. Some are what I would consider accessible (such as FWD), and some have obvious access flaws, such as not including a detailed description of graphics, and some I’m really not sure how accessible they are. I was going to try to choose only blogs that I’d consider “more accessible,” but I ran into three problems: 1. The meaning of “accessible” varies greatly depending on the reader’s disability. 2. My own grasp of what’s accessible to others is greatly hindered by my relative computer illiteracy, so I’m often not sure how accessible a given blog is to a given person with a disability. I just don’t grok how the software interfaces with the disability. 3. I haven’t come across that many blogs that I love which are also more-than-usually accessible. (A sad commentary.) However, I encourage you to comment if you go to one of these blogs and find it accessible to your particular disabilities, as this would be good info for all of us. Thank you!

Now, here they are, my picks for the One Lovely Blog Award! Please visit them and enrich your blog-reading experience!

1. FWD/Forward (Feminists with Disabilities for a Way Forward)

This is the only blog that I actually subscribe to, which is saying a lot. I always feel overwhelmed by too much email (who doesn’t?), and yet I read this blog — which sometimes contain multiple posts — every day. FWD is the smartest, most diverse, thoughtful, informative, honest, and ethical blog I’ve come across. There are several bloggers at FWD, and they really work their asses off to provide quality material. FWD has made me rethink what language I use and how I’ve set up my blog for accessibility, and taught me much about politics, the internet, and so many other things I can’t even list them. It often gives me a laugh and much-needed affirmation, too. If you have any interest in feminism or disability rights (and other social justice issues), this is the blog for you. And if you are not that interested in feminism or disability rights, then all the more reason to check it out and learn a little something!

2. VirtuaVet (Online Pet Health Consultations, Coaching and Philosophy)

VirtuaVet is Doc Truli, and she is Truli wonderful. She is a small animal vet, but has worked as an ER and livestock vet, and has had more species of pets than I could imagine! The blog is written beautifully, with great explanations — often with accompanying pictures — for the layperson. Yet, Doc Truli never talks down to her readers. There are quirky posts that cover veterinary issues I’ve not seen anywhere else, such as “Snakes Are People, Too!” and “Fat Dachshund” (the latter of which is one of Doc Truli’s occasional rants against the pet food industry, which is awesome). Not only is VirtuaVet fabulously informative, it also deals with ethical issues. One of my favorite posts starts this way: “I believe your decisions regarding your pets’ care are practical, ethical, moral, and spiritual decisions. Therefore, my advice and approach is unique in veterinary medicine. I love animals to an obsessed, crazy degree.  But I do not adore, love, or idolize medicine.” If only more vets (and MDs) felt this way!

3. GenderBitch (musings of a trans chick)

I discovered GenderBitch at questioningtransphobia, where she is a guest blogger. As GB’s name suggests, this is an angry, funny blog that deals with gender. To be more specific, it mostly deals with transgender issues and transgender oppression, with a lot of overlap with other issues, such as ableism, sexism, polyamory, etc. What I love about GB is how completely unapologetic it is. It is also raw, witty, raging, well written, sarcastic, intelligent, hilarious, geeky, and courageous. Two of my all-time favorite posts — ever — were written by Genderbitch, so I’m also including the links to these two posts: “But I Was Just Curious!” The Fail of Invasive Questions and Intent! It’s Fucking Magic! If you have an interest in queer and/or trans stuff, this is a great site to learn more, get worked up, feel shocked and saddened, or practically pee your pants laughing. If you are not familiar with trans issues, you can learn a lot from Genderbitch, including some terminology (e.g., the prefix “cis,” which essentially means “not trans”) which has not yet made it into “mainstream” vocabularies. But if I, with my cognitive impairment, can figure out, for example, what “cissexism” means, you can, too. Soooo worth it.

4. The Other End of the Leash

Author, behaviorist, trainer, and farmer Patricia McConnell writes a visually beautiful; emotionally open, honest, and lovely; and intellectually engaging blog about life on her farm, and particularly, her dogs. She describes her blog as “an ongoing inquiry about the behavior of people and dogs. I would like this to be a forum for people who are both intellectually and emotionally fascinated by the behavior of the animals at both ends of the leash. My hope is that it will become a place for an informed and thoughtful consideration of the amazing relationship between people and dogs.” She reaches her goal, and so much more. The pictures of the flora and fauna on her farm are delightful, and she always has something personal, yet universal (to dog owner/handlers), to discuss. I don’t read it that often, but every time I do, I think, “Wow, this is totally relevant to what Barnum and I are going through! I must come back here more often!”

5. The Canary Report: Sounding the Alarm about Multiple Chemical Sensitivity

Susie Collins’s The Canary Report is a very active blog of multiple contributors, forums, news articles, creative calls to action, and personal stories, all relating to the environment, health, or MCS. Susie always has a welcoming “Aloha!” for all commenters, and her humor, energy, and nonstop ideas keep the blog vibrant and fluid. Activism, advocacy, and education play a central role here, but there is also fellowship and personal connection. I recommend it to other canaries (people with MCS), as well as to people outside our world who want to learn how they can help protect themselves, their families, animals, and the planet from the harms of pollution, be it small-scale (chemicals in personal care products) or large-scale (the BP oil leak crisis in the Gulf).

6. Susie Bright’s Journal

I’ve had a soft spot for Susie since — as a co-founder of, and columnist for, On Our Backs, a groundbreaking women’s sex magazine — she helped me discover my sexuality in the late 1980s. A decade later, I was thrilled to have my fiction published in OOB (under different management) and then by Susie, herself, in two anthologies. But none of this is why I’m listing her blog here! Quite simply, Susie’s blog is terrific reading! The writing is crisp, clear, and well-researched. She is funny and thought-provoking. You can learn anything about sex and how it intersects with politics, culture, art, history, and more, fascinatingly and articulately spelled out by Susie Bright. She is most to blame for me spending way too many hours lost in obscure lesbian film history or her own tales of wild adventures with famous folks, simply because I clicked on one of her tweets.

7. Lymenaide (living in harmony with Lyme)

Ashley van Tol’s blog about living with Lyme and other tick-borne diseases is the most comprehensive personal Lyme site I’ve found. She has it all — musings on life with Lyme, recipes for those on restricted diets, a store to raise funds for Lyme awareness, calls to action, legislative news, and more. Where Ashley really shines and has made a name for herself in the Lyme community is her activism to raise awareness about Lyme prevention and treatment, and the need to treat Lymies with respect and understanding. She was the force behind four professional TV public service announcements (featuring well-known actors) for Lyme Awareness Month. Ashley manages to write a blog that is celebratory and joyful without distorting the realities of living with Lyme. It’s a site anyone can appreciate, whether they have Lyme or not.

8. Brilliant Mind Broken Body (living with Ehlers-Danlos Syndrome)

Last, but certainly not least, a blog from a fellow assistance-dog partner! Kali writes clear, fluid prose, designed to be understood by both those with disabilities and those who want to know a bit more about what it’s like to live with disability, and specifically, her disability of Ehlers-Danlos Syndrome. (On a personal note, I was surprised and pleased to find BMBB because I had a friend with EDS, and nobody had ever heard of it.) Kali’s posts range from “a typical day in the life of a service dog partner” (my favorite post of hers to date); to social justice issues — such as how -isms like fat oppression, ableism, and sexism interconnect; to silly stories about her quirky SD, Hudson. BMBB is also hosting the next Disability Blog Carnival — keep an eye out!

Please visit these worthy blogs, and give them some love.

As always, your comments are more than welcome.

Peace,

Sharon, Barnum (taking a break from being a blog topic this week), and the Muse of Gadget (missed more sharply in these summer months)

Bitten by the Bug: Lyme Awareness Month, Part I

May is Lyme Disease Awareness Month. I have many diseases, and they each have various awareness days or months, so I generally don’t participate — it’s too overwhelming. In fact, May is also International MCS Awareness month, which means I could do a double-header if I was up to it. Which I’m not, due to Lyme making me too nonfunctional. (See the segue?)

Little Tick Big Problem Lyme Disease

I have three-dozen draft posts on a variety of other topics for After Gadget that I’ve never published. But I’m determined to finish and post these Lyme Awareness Blogs, even if I can’t squeeze them all in this month. They cannot be more unedited pieces languishing in my draft folder. The topic’s too important.

My inability to publish with any urgency or regularity tells you a bit about living with Lyme. Extreme exhaustion, trouble with memory and word retrieval, and poor stamina are all part of the picture. So is severe and relentless body pain, insomnia, migraines (and all that goes along with them), dizziness, weakness, and much more. That’s about enough of that laundry list.

You see, there are a lot of other terrific Lyme Awareness Month posts that tell “a-day-in-the-life of a Lymie” or explain symptoms or elucidate the bacteriological mechanisms behind the disease.

I hope you will read a few.

I recommend checking out this funny one by a guy at Lymenaide; or buzzing by this SpiroChicks post showing a video public service announcement she made; or a trip to Lymebites with its variety of little posts and links to other good Lyme information; or this noteworthy Infectiously Optimistic blog, where Candice has provided many of The Voices Behind the Disease (including yours truly).

Under Our Skin poster

Mandy Hughes eyes uncertainty in her struggle with Lyme.

I definitely urge you to rent and watch the film, Under Our Skin. It is a phenomenal piece of work, and it will completely transform what you thought you knew about Lyme disease.

Another unusual aspect of Lyme is that it affects people and dogs; both Gadget and I contracted it. Many disabilities cannot be prevented, or cannot be ameliorated. Lyme, to varying degrees, can — that’s what makes awareness so crucial.

Sharon and Gadget cheek to cheek

Gadget and I both had Lyme here, but I didn't know it.

The next three After Gadget blogs will specifically address Lyme awareness from the service dog perspective:

  • How Lyme can affect your dog, and what you need to know about it (that your vet might not).
  • How Lyme can affect you, and what you need to know about it (that your doctor might not). **UPDATE: I finally wrote Part 2, about my Lyme journey, which is so representative of so many people’s, unfortunately.**
  • How Lyme transformed my experience specifically as a service dog partner.

Note: Since this blog series focuses on awareness, I’m honing in on the issues that I think are most important for you to be aware of. My goal is to prevent more cases of Lyme — especially chronic or untreated Lyme — in dogs and people.

So, I’m going to skip a lot of general information. For example, telling you the name of the strange organism that causes this disease will probably not be what impels you to rethink the limp that comes and goes in your dog, or that frustrating “flakiness” of your sister-in-law. It won’t change your mind about whether you are taking adequate precautions against tick-borne disease (TBD). On the other hand, I hope this series will.

You probably wouldn’t be here if you didn’t care about dogs, so Part I is dedicated to . . .

Part I: Awareness of Lyme Disease in Dogs

Disclaimer: This information is presented for informational purposes only. I am not a veterinarian or any other kind of health professional, just an informed consumer. These are my own opinions, based on my experience and research. Every dog — and their person — is different. Always do your own research, and trust your instincts!

Side A: PREVENTION

This Petside blog in honor of Lyme Awareness Month is pretty typical of most veterinary Lyme articles, or a bit better. It urges daily tick checks, gives basic (though limited) information on how to remove ticks (though this Lyme site does it better), and warns that Lyme is a problem in every US state and in every country worldwide.

US Map of Infected Ticks

American Lyme Disease Foundation map showing highest concentrations of Lyme-infected ticks.

Please reread that sentence, above. I cannot tell you how many times I have heard people say, “Lyme isn’t a problem here.” Doctors, too, frequently tell patients with Lyme, “Oh, we don’t have Lyme in [our state].” Unfortunately, many veterinarians believe the same thing. Some will even refuse to test for Lyme or other TBDs. If your vet does this, it’s time to get a new (or a second) vet. These are not diseases you can afford to stick your head in the sand about.

The sad reality is that nobody can say with confidence, “Lyme isn’t a problem here,” because it’s a problem everywhere. Although the dots in the map above show where Lyme-carrying ticks are most prevalent, dogs migrate as much as people. They move across the country and the globe by car and airplane for breeding, as pets, and for competitions. And wherever there are dogs, there are ticks.

I know people and dogs who have contracted Lyme in cities with almost no vegetation; in desert areas, like Arizona; and in frozen areas, like Alaska. Lyme is spreading into areas where it was previously extremely rare. Certainly, in endemic areas such as the West Coast, the Great Lakes region, and the East Coast, vets should test and evaluate for Lyme as part of routine check-ups. But even in other areas of the country, when unexplained symptoms arise (and even some otherwise explainable ones), TBDs should be ruled out.

If the ground is not totally covered in snow . . .

The Petside article, as is true of most pieces on Lyme, focuses on the hot summer months as the danger time for ticks. In fact, ticks emerge and start feasting on our dogs (and us) in the early spring and continue through the late fall. I’ve found ticks on my dogs even when there is still snow covering much of the ground.

I live in one of the most Lyme-endemic areas of the country. As of this writing, we have found over forty ticks on Barnum; at least half have been deer ticks. We started finding them in March. Last year, we found ticks through November. In fact, in my area, the worst tick times are usually April/May and September/October. Therefore, depending on where you are in the country, if you start checking your dog for ticks in May or June, you might be too late.

The Lyme vaccine was banned for human use,  yet . . .

The Petside article also suggests use of the Lyme vaccine. Most veterinary colleges and informed vets do not give the vaccine. First of all, there are multiple other TBDs that are potentially fatal to dogs, and the vaccine does not address them at all, so getting the vaccine is not a replacement for preventing tick-related problems. Further, the vaccine can cause Lyme-vaccinated dogs to contract an untreatable form of the disease, and it makes one of the most common veterinary Lyme test useless. In fact, several years ago, Jersey’s veterinarian — a very traditional vet — told me that, despite the huge number of Lyme cases their practice saw, their experience with the vaccine was that it was both risky and ineffective, and they now urged clients not to use it.

Tick prevention products not always “spot on.” . . .

Canine Lyme is transmitted by ticks (specifically by three species of ticks, the Deer Tick [or Eastern Black Legged Tick], the Lone-Star tick, and the Western Black-Legged Tick). Therefore tick-bite prevention is important. Most people (often urged by their veterinarians and groomers, who sell the products), use flea-and-tick pesticides on their dogs to combat ticks. It’s almost impossible to open a pet catalog or magazine or enter a pet-supply store without being bombarded by inducements to use these products. Advertising, of course, works. Flea-and-tick products are a billion-dollar industry. In 2006, Frontline and Advantage were the two top-selling flea-and-tick products. Advantage is made by Bayer. Only two Bayer products outsold Advantage that year — aspirin and a diabetes drug.

Unfortunately, putting Frontline or Advantix on your dog every month is not necessarily going to prevent your dog (or you) from getting Lyme. For one thing, these types of “spot-on” treatments require the tick to bite the dog to be effective; only after it’s stayed attached for eight-to-ten hours does the tick succumb to the poison it’s been drinking in the dog’s blood. Unfortunately, there is no scientific consensus as to how long a tick needs to be attached before it can transmit Lyme. Various “authorities” have told me 24 hours, 36 hours, and 72 hours, which strikes me as a pretty arbitrary range. Further, other TBDs can be transmitted within shorter intervals, such as five hours for rocky mountain spotted fever.

Equally important is whether these products work at all. I’ve been hearing from friends, neighbors, and veterinarians that formerly effective products no longer prevent ticks. These observations are affirmed by NRDC’s in-depth report, “Poisons on Pets”:

While pet products often are marketed for use against both fleas and ticks,
many are not particularly effective against ticks. . . .
Experts also have observed signs of insecticide resistance among ticks. They
simply are not as easy to treat as previously. . . . However, there is little or no hard data on the problem, since there has been no concerted federal effort to do the research and collect the data. . . .
Regional variation in resistance further complicates the picture. . . .
None of [even] the [tick-specific] products are completely effective.

Thus, new poisons are created, tested (in pretty nasty ways on puppies and kittens — just read the small print in the advertisements), marketed as “new and improved,” and sold to desperate consumers.

As someone whose life has been devastated by Lyme disease, it’s hard for me to argue against using something that works to prevent ticks to some extent, even if it doesn’t stop them all. I understand where the panic comes from.

However, as someone who is also chemically injured and made terribly sick by these toxic chemicals, knowing that I can be exposed at any time with dire consequences is also panic-inducing.

In fact, the Environmental Protection Agency has issued warnings about, and increased scrutiny of, spot-on flea and tick products, reporting that they have caused hundreds of deaths and thousands of cases of illness in dogs and cats. People, too, have been disastrously affected, especially small children, as discussed in the NRDC document, as well as numerous other sources.

Ultimately, knowing the risks to people, dogs, and the environment of tick pesticides, I urge safer options.

What are safer options? . . .

Solid science is emerging in the use of plant oils (essential oils derived from plants and trees) in repelling and/or killing ticks and other insects and arachnids. This EPA page provides an informational chart. I’ve done some research, and there seem to be several products on the market that repel ticks, fleas, mosquitoes, and other pests without toxic chemicals. Unfortunately, due to my sensitivity to (even natural) fragrances, I can’t use them, but for most, they should work. They generally require more frequent application than “spot on” treatments — usually once or twice a week, after getting wet, and before any expected exposure to ticks or other bugs. If you’re looking into a product that claims to be “natural” and only requires application once a month, suspicion is warranted. I don’t want to endorse specific products or stores, but this is a google search that should get you started. If you’ve used a nontoxic product that’s worked, please comment.

Even with a good, nontoxic tick spray . . .

Tick checking is crucial. The earlier a tick is removed, the lower the chances for it to pass an infection to your dog. Thus, every 24 hours at a minimum is best.

Many people think they tick check, but they are not doing a thorough enough job. For tick checking to work, every part of the people and animals at risk must be examined in detail, from toes to nose to tail to crown. On dogs, ticks’ favorite spots are usually the head (especially the ears), neck, shoulders, and legs. However, I have found ticks between toe pads, on lips, backs, anus, eyelids, and everywhere else on a dog.

If you have never found a tick on your dog, it’s because you’re not searching thoroughly.

If you live in an endemic area, and you don’t find at least several ticks per week on your dog, you are not searching thoroughly.

I know these are strong statements, but I make them based on hard experience.

For one thing, adult deer ticks are the size of a poppy seed when not engorged. Nymphal ticks are the size of a pin head when they are engorged. Most cases of Lyme transmission to humans — who are much easier to tick-check than dogs! — are caused by nymphs.

Deer ticks on fingertip

For another, frequently, other people tick check my dogs for me and tell me they didn’t find any, or they find  one. Often, if I check again, I find at least one more. Once, Betsy and I found a deer tick larva on Gadget, the very smallest of ticks. We happened to be at the vet’s when we found it. It was so small, I didn’t think it was a tick until after I pull it off and examined it extremely closely to see that it had body parts. It looked like a skin fleck. When I gave it to a tech to ask her to dispose of it, she said, “How did you find this?” in an astonished tone. If vet techs in an endemic area don’t realize how small a deer tick can be, what are the chances we all overlook ticks if we don’t check thoroughly?

It takes Betsy and me, working together, at least an hour to thoroughly tick check one dog. Of course, if we had small, white dogs with short, soft hair, it would be a lot easier than large, dark dogs with long wiry hair! Even if you have a small, pale dog, looking is not enough. You have to feel every inch of the dog. This can turn into a nice nightly ritual where the dog gets a full-body massage. Gadget used to love tick checks. We called it “dog cuddling time.” He’d get very relaxed and floppy. Sometimes he would moan with pleasure or fall asleep. Barnum enjoys jumping on the bed and receiving the attention, but he still is very mouthy and wiggly, which makes it much more time-consuming. (Often, the only way we achieve it at all is that I click and treat Barnum for relaxed behavior, using the techniques outlined in Leslie McDevitt’s excellent book, Control Unleashed, while Betsy does most of the groping. Then, when she finds a tick, I pull it off.)

Sometimes Betsy or I will carefully check a leg or an ear and find no ticks, and then we will switch, and the other will find one, two, or three ticks that were missed on the same body part! Again, this is because ticks can be smaller than the dot over the “i” in this sentence. Here is a page that shows a variety of ticks, both enlarged and actual size, and before feeding and after engorgement.

Even if you don’t walk in the woods . . .

I’ve heard a lot of reasons people think their dogs (and they) are safe from Lyme and ticks. These include that they walk their dogs in the middle of the road, that they don’t take their dogs to the homes/lawns of other people (such as me) who know there are deer ticks in the area, that they keep their dogs to their own lawn, and more. If only it were so simple. (Some people also believe that if they or their dogs are ultra healthy, they will be immune. Sadly, this, too, is not the case, although as I mention at the end of the blog, a strong immune system is a major asset.)

Most people with Lyme get infected in their own yards. Some put this figure at 70 percent of Lyme cases. There is a lot of information on how to make your yard less attractive to ticks. Some simple things are keeping the lawn mowed (or doing away with a lawn — clover is nice instead) and getting rid of dry leaves, brush, and other debris that harbor mice, as mice as the main carriers of Lyme to people. This New York state guide to creating a tick-free zone around your home provides more detail. It seems extremely unlikely that our dogs are any less likely to pick up ticks around their homes — that they are only acquiring these blood-sucking hitchhikers in the woods or near the ocean. In fact, ticks prefer medium-sized mammals like dogs (thus, some species of ticks are even called “dog ticks”) though ticks will feed on anything with blood that comes their way, including much larger mammals (horses) or birds, etc.

Being aware of weather and climate issues is also important. Ticks prefer a moist environment because dry heat is dangerous to their exoskeletons. Thus, the biggest Lyme outbreaks are often in coastal areas, such as Cape Cod and Long Island. Articles that focus on hiking and dog park might mislead you: don’t discount walks on rainy days — or just running outside to potty. In fact, during wet spells, we had ticks crawling onto our driveway and up our doors!

Side B: DIAGNOSIS AND TREATMENT

Prevention of tick bites is certainly important, but as is probably painfully clear by now, it is not always possible. Given this, it is essential to know the signs and symptoms of Lyme and other TBDs and to do your best to make your dog as resistant to illness as possible.

Know thine enemy . . .

Among both physicians and veterinarians familiar with Lyme disease, it is known as “the great imitator,” because its symptoms can mimic those of so many other diseases, and because Lyme — and other TBDs — can affect so many systems in the body. Because Lyme and TBDs can sometimes be fatal in dogs, or at the least can turn into chronic health issues, it’s important to know the symptoms.

In Lyme disease, the most common symptom is lameness. It is often a sudden onset, and it might move to different joints, come and go. Swelling or tenderness may or may not accompany the lameness. Other stereotypical symptoms of sudden-onset Lyme are fever, loss of appetite, lethargy, and weakness. Kidney, brain/neurologic, and cardiac symptoms — that were not previously noted — can also be signs. Dr. Schoen’s article, Lyme Disease: Fact or Fiction, is a good one, not least because he lives and works in an endemic area and has seen the many permutations this disease can take. WebMD also provides a concise, yet useful, overview of canine Lyme. If you want a broader survey, a google search using keywords Lyme dogs symptoms is effective.

There are too many TBDs for me to cover all the symptoms and syndromes adequately, but I encourage you to learn about, at the very least, ehrlichia, babesia, rocky mountain spotted fever, anaplasma, and bartonella and make use of these links. This tick FAQ has an extensive list of symptoms, as well as listing diseases that might be mistaken for TBDs. This page on canine TBDs provides the personal, and heartbreaking, background for the urgency in proper diagnosis.

One site to bookmark is Cornell’s “Consultant” search engine. You can search by the name of a disease or by the symptoms your dog is displaying.

Testing, testing, 1, 2, 3 . . .

While laboratory tests can certainly prove useful in diagnosis, in Lyme and other TBDs, they are not always the most useful tool. As previously mentioned, a dog who has been vaccinated for Lyme will usually show a false negative on certain tests. However, it is also possible for a dog to have Lyme or another TBD and for the test to come back a false negative. This is why it is so important to know the symptoms, to be aware of your dog’s level of tick exposure, and to know the prevalence of the different tick diseases in your area. If enough signs point to a TBD, and especially if your dog is really sick and/or your veterinarian is not sure of the diagnosis, it is often prudent to treat for that disease and see if there is a response.

There is also controversy about when or whether to treat when a dog tests positive for Lyme. The conventional wisdom until very recently was that the great majority of dogs who are exposed to the bacterium that causes Lyme, and who therefore have antibodies for Lyme disease, don’t actually become sick. Many vets, therefore, did not (and most still don’t), treat a dog for Lyme unless she is showing obvious symptoms.

However, new studies are showing that dogs who appear to be asymptomatic might actually be experiencing symptoms undetected — either subtle clinical symptoms or those that only show up on lab tests. In fact, the infection might cause serious long-term damage if untreated even when there are no known symptoms. This article presents this new information. It is the best I’ve read on this aspect of Lyme in dogs; please read it, and bring a copy of it to your vet.

The Great Imitator . . .

Because Lyme tests are not always accurate, and because TBDs can resemble so many other conditions, if your dog exhibits symptoms that stump you and your veterinarian, it’s important to raise the question, “Could this be Lyme and/or another TBD?” In fact, even if your vet arrives at another diagnosis, you might still want to test and/or treat for a TBD if the symptoms are suspiciously similar. For not only might Lyme be masquerading as arthritis, a heart condition, or another condition, it might also be part of the clinical picture along with another disease.

This was the case with Gadget. When the ER vet told me she was pretty certain Gadget had lymphoma, she also said it could be a tick-borne disease, so we ordered a C6 ELISA test for Lyme or a Lyme PCR, if possible — a more accurate and detailed test than the in-house SNAP test — and a complete TBD panel from Idexx. As it turned out, while Gadget did have lymphoma, he also had a Lyme titer that was literally off the chart; it was above the highest titer level the C6 tested for. Treating his Lyme did not save Gadget’s life, but he responded very well to treatment with the antibiotic, doxycycline. His quality of life during his last few months was tremendously enhanced by treatment for Lyme. His energy and movement improved greatly. I only wish I had realized sooner that the slowing down I’d attributed to age and hypothyroidism was probably actually related to invisible joint pain.

Holistic and Conventional Treatment Approaches

Even among practitioners and clients who try to avoid medications, especially antibiotics, when not absolutely necessary, there is a near consensus that Lyme and other TBDs require “the big guns.” In fact, in my experience, many vets are not as aggressive as they should be when treating Lyme. The microbe that causes the disease is complex and tough. It often remains in the dog’s system even after a short (or even a long) course of antibiotics. Those who have been “in the trenches” of the Lyme life — be it human or canine or both — have learned the hard way that it’s best to hit this disease hard, fast, and sustained. For many vets and owners, this means combining antibiotics with other modalities (herbs, acupuncture, homeopathy) to fight the microbes with all possible weapons.

The best antibiotic to fight Lyme is doxycycline, with two exceptions. One is if your dog is allergic to this drug. If he is, amoxicillin is considered the second-best choice. The other is if you have a puppy whose bones are still forming. Doxycycline can interfere with calcium and affect bone growth, so this is something you and your vet will have to weigh. Treatment should be five milligrams per pound of body weight for at least two months. If your vet wants to take more of a “wait and see” approach without a darn good reason, find another vet!

If you live in a Lyme endemic area and/or you are unable to use any form of effective tick preventative, please take whatever steps you can to help your dog’s immune system fight off infection. While everyone wants their dog to be as healthy as possible, it’s worth noting that the microbe that causes Lyme disease attacks and suppresses the hosts immune system as soon as it begins to colonize. According to Stephen Buhner, the author of Healing Lyme, the degree to which someone gets sick with Lyme disease after exposure to the bacteria — both whether they get Lyme disease and how sick they get — is directly related to the strength of their immune system.

There are two approaches to applying this information. One is ensuring that your dog is as healthy as possible. This means the healthiest possible diet, the right balance of exercise and rest, freedom from stress when possible, and protection from harmful elements, including excessive vaccination, medication, pesticide, and the like. Again, some might also choose other health care modalities to shore up your dog’s immune system.

The second approach is to give your dog herbs (some use tinctures, others dried herbs as capsules) specifically shown to help prevent Lyme or to treat early-stage Lyme. This way, if your dog is exposed to Lyme-causing agents, you might head off the disease before it gets a foothold. The herbs in this list are sarsaparilla, cat’s claw, andrographis, astragalus, and resveratrol (Japanese knotweed — not the grape extract sold under the same name). Obviously, to learn the proper administration and dosage, you should consult an herbalist experienced with canine Lyme.

While Lyme-fighting supplements and a superbly healthy lifestyle can go a long way toward prevention of Lyme — or of chronic Lyme — they are by no means guarantees. Please don’t think that you don’t need to tick check just because you feed raw, don’t vaccinate, and don’t use pesticides. Anyone can get sick from this nasty, stealthy bug. By the same token, if your dog does get sick, please don’t blame yourself. We should all do the most we can to be aware and take preventative measures, but in the end, luck plays a factor, too.

Thank you for reading this long post!

May this information remain strictly academic for you and your dogs, for years and years to come.

As always, we welcome your comments and questions.

-Sharon and the muse of Gadget, with Barnum (the fast-growing, and so far, healthy, puppy)


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