Posts Tagged 'tick-borne disease'

What a Bartonella Herx Looks Like

Today’s post feels very vulnerable. It contains two short videos of me that are not the way I normally want people to view me. However, my desire for understanding for myself and for other people with Lyme and other tick-borne disease is stronger than my worries of what viewers might think about me.

I’ve been very sick lately. Partly this is a result of Herxheimer reactions I’m having from a powerful medication I’ve recently started using to fight one of my tick-borne diseases, bartonella. Bartonellosis is also sometimes called cat scratch disease.

Even though I’ve been treating Lyme disease for over five years, there are still people in my life who don’t really understand what herxing is and why treatment sometimes seems to make me worse. So, I decided to video myself going through a herx reaction as a way to help my friends understand.

I also want this information (both the videos and the written information here) to be available to the general public, especially other people with tick-borne diseases (TBDs), their families, and the medical community. TBDs are still not very well understood. For example, there are 26 known strains of bartonella, but when people get tested, they are typically only tested for one strain, bartonella henselea — the strain that causes cat scratch fever.

I never had a positive bartonella test, but because of my other symptoms, known tick bite and other positive TBD tests, I was diagnosed clinically. I hope this post will answer questions about what herxing is and why people with TBDs persist with a treatment that appears grueling.

Often when I tell people that I’m sicker because I’m doing a new treatment, they think I’m experiencing side effects from the drug. This is not the case. According to drugs.com:

side effect is usually regarded as an undesirable secondary effect which occurs in addition to the desired therapeutic effect of a drug or medication.

In other words, side effects are never good. Whether you stay on a drug that’s causing side effects or not depends on the severity of the side effects and the usefulness of the drug; but drug side effects are never an indicator of efficacy.

A Herxheimer reaction also involves unpleasant symptoms (which can range from brief discomfort to serious and prolonged or even deadly symptoms) that occur after taking a medication. However, these symptoms are not side effects of the drug, itself. Instead, they are the result of massive die-off of pathogens by the antimicrobial medication (usually an antibiotic, but sometimes an antiparasitic or similar). These dead or dying microbes release toxins into the body, and symptoms result until the body is able to process and eliminate these toxins (detoxify).

This Chronic Illness Recovery website explains herxing well:

Herxing is believed to occur when injured or dead bacteria release their endotoxins into the blood and tissues faster than the body can comfortably handle it. This provokes a sudden and exaggerated inflammatory response.

The treatment of many bacterial infections provokes a Herxheimer reaction. Herxing was originally observed in patients with acute infections such as syphilis. . . . The immune system response to acute infection is sometimes referred to as the immune cascade. For example, in the infamous anthrax attacks people died because by the time they got to hospital the anthrax organisms had multiplied to the point where killing [the anthrax organisms] also killed the patient.
It has been reported that patients with chronic conditions or infections such as rheumatoid arthritis, Lyme, tuberculosis and louse-borne relapsing fever have also experienced herxing when treated with the appropriate antibiotics.
Chronically ill patients are carrying a heavy load of intracellular pathogens by the time they become symptomatic. . . . The immune system response when these intracellular bacteria are recognized and killed causes a similar immune cascade.
In other words, herxing only occurs when a treatment is appropriate and effective. If you are not infected by the particular microbe you’re targeting with a particular antibiotic, you will not herx on that antibiotic. And generally speaking, the worse your infection is, and the more effective the antibiotic is at killing it, the worse you herx.* For this reason, herxing is also sometimes referred to as a “die-off reaction” or a form of “healing crisis.”
Although herxing has caused me a lot of physical and emotional distress over the last few years, I also find it a useful tool. Whether or not I herx on a particular treatment can be a helpful indicator of the presence or severity of a given infection. It can also provide information on whether a given drug is efficacious or not for what we’re trying to treat.
People often ask me how I can differentiate between when I’m experiencing a herx and when I’m experiencing a bad reaction to a drug or suffering from a drug’s side effects. Although it’s not always entirely straightforward, usually the following is true of a herx, for me:
  • Herx symptoms are often stronger versions of what I was already experiencing as symptoms of tick-borne disease (TBD). For example, I often have increased pain, exhaustion, shortness of breath, and weakness when I herx, but these are already symptoms I’m living with due to TBDs. The herx just makes them more intense.
  • Some herx symptoms are known symptoms (sometimes esoteric ones) of the TBD I’m treating. For example, burning on the soles of the feet and shin-bone pain are two classic symptoms of bartonella, both of which I have had pop up or worsen when I started a drug that treats bartonellosis. Air hunger and night sweats are classic babesiosis symptoms, both of which worsened for me when I started treating babesia a few years ago with antimalarial drugs. Also, some TBDs tend to act unilaterally and others act bilaterally, so a symptom that was present before in both sides of the body might worsen on one side only during a herx; bad reactions to medications and side effects are not usually this quirky. Although I started having joint pain soon after I was infected by a tick, it was not until I started treatment that I had joint swelling. Five days after starting the antibiotic Flagyl, my toes swelled up. Later, when I started Bicillin (an intramuscular injection of penicillin), my wrists and knees puffed up. Eventually, after sufficient treatment, my toes and joints regained their former appearance. Likewise, I was having trouble voicing when I woke up yesterday morning, and I was already exhausted and in pain, though happily, my voice had returned to full strength shortly before I started my infusion. (Also, I was working so hard while being videoed at explaining what was happening with me — using notes to try to be comprehensible and accurate — that I actually think I look less sick than I was. After we stopped taping, for example, I went into an extended coughing-and-trouble-breathing jag and also was just lying there and unable to move my arms much to rest up from the exertion, but hopefully you get the idea.) So when my voice went away again during the infusion (as you’ll see in the video), that was a pretty obvious sign of herxing, but I have been nonverbal most of the last six weeks, whether or not I’ve done a recent infusion.
  • Herx symptoms usually hit hard and fast and then (eventually) go away. Most of the time, if I take a new antibiotic orally or by intramuscular injection, the herx will start within a day of the new treatment. Sometimes within a few hours. There are variations. Sometimes it starts out mild, with just one or two symptoms, and over the course of a few days, the symptom get stronger and others reveal themselves. If I am infusing the antibiotic (intravenous therapy), the herx usually starts within minutes (as you’ll see in the videos below). How long herxes last varies a lot. I seem to herx for much longer than most other Lymies I’ve talked to. I’m not sure why. Maybe it’s because I was so severely infected with so many pathogens for so long, and then I started aggressive treatment with multiple drugs, full strength, at once (which I will never do again and strongly advise against!), but I herxed for well over a year on some drugs (probably because they were in combination). With side effects, or other adverse reactions to drugs, usually I do not start out with that symptom, and then it appears and increases over time. With herxing, it’s the opposite: it starts out strong, and then it gets less severe. Eventually the herxing stops and I feel better on the antibiotic than I did before I started it.
  • By now I am familiar with what most of my TBDs do and what my herxes feel like. Some examples are listed above: muscle and joint pain, exhaustion, tremor, weakness, dysphonia, etc. Other symptoms were harder for me to clue in to. For the first year or two after the tick bite, I was really crazy a lot of the time. I didn’t realize that the way I was feeling emotionally was a symptom of the TBDs. I also didn’t know what herxing was. So, I was already experiencing a lot of psychological and behavioral symptoms that I wasn’t really aware of. (I just thought everyone else was being unreasonable.) Then, when I went on antibiotics, the symptoms got worse. The more powerful and effective the treatment was, the crazier I got. This caused serious damage to my relationships and sense of self because I was not aware of what was happening, nor did I have the supports I needed to manage it. Now, before I start a new antibiotic, I tell key people in my life so they can be on the watch for any psychological symptoms I might be unaware of. However, after six years of dealing with this, I’m now very tuned in to what is “me,” and what is “the bugs eating my brain.” Fortunately, I don’t have psych herxes with every new drug. They seem to be worst for babesia (mood swings, desolation, hopelessness, paranoia) and Lyme (agitation and rage).
Below are two very short videos I made yesterday. The first one is at the beginning of my infusion, and the second one is 25 minutes later, at the end of the infusion. I chose to video yesterday’s infusion because: 1. Yesterday morning I had relatively clean hair and good natural light. 2. I was increasing my dosage so I thought it was likely I would herx. (As it turns out, I herxed much faster than I’d expected.)
If you’re reading this in an email or to watch the captioned version of Part 1, click here. A transcript of both videos is at the bottom of this post.
The Youtube of Part 2 is below, but it’s all nonverbal and signed, so unless you can understand really exhausted, broken ASL, you’ll want to watch the captioned version.
Now that you’ve watched the videos, I hope you will keep these three things in mind:
  1. Herxing subsides in time. I will not go through this every time I infuse this medication. Eventually it will make me feel better, not worse. I’m on several other antibiotics that have helped me improve a lot, and if I go off them, I tend to get worse (unfortunately). Meanwhile, the herx tells me the drug is doing what we want: killing the bacteria.
  2. Everyone’s herxes are different. There are some common bartonella symptoms, but each person’s constellation of symptoms are unique.
  3. If you are starting treatment for Lyme or other TBDs, I strongly recommend only going on one new treatment at a time until you are tolerating it well and also starting at low doses and ramping up over time. In both the short and long run, it’s safer and kinder to yourself not to try to tough out the most extreme herx possible.
I hope this was useful. I welcome comments and questions. I also hope you will share links to the videos and to this post to spread awareness of tick-borne diseases and their treatment.
-Sharon, the muse of Gadget (canine Lymie), and Barnum, SD
*This does not mean that herxing always occurs every time someone takes an antibiotic for a bacterial infection! Some types of infections are much more likely to cause herxes than others, and a few fortunate people don’t seem to herx in situations where others do.
P.S. Betsy walked into my room later that day and said, “Are you wearing makeup?”
I said I was because I’d made a video of myself, and then I showed it to her.
She said, “You put on makeup to show how sick you are??”
I said no, not to show how sick I am, but to show what herxes can look like. And, “Just because I’m sick doesn’t mean I want to make a video looking like crap!” I mean, these images stay on the interwebz forever…. Sheeh! It’s a femme thing….
Transcript of First Video:
Sharon is propped up in bed, oxygen cannula in her nose and IV line running from under her shirt off camera to her side. Sharon: Hi, it’s Sharon. I’m just starting my Rifampin infusion this morning — to show the difference between before a herx and after or during a herx. Right now, before it’s starting, my pain is about a four or five throughout my body. And my voice is working, as you can hear. Oh, it’s already starting. [Voice becomes scratchy.] I’m feeling some tightness in my chest, and um, starting to get cognitively impaired, and my voice is starting to go a little bit. And I’m starting to have trouble breathing, which is why I set up the oxygen before we started. But I was not expecting it to go this fast. [Voice becoming more hoarse.] So [laughs, coughs] I’m a little surprised and unprepared for how fast it’s hitting, and I’m going to take a break now and finish recording later. Off camera: Cut? Sharon: Yeah.
Transcript of Second Video:
[Sharon lies in bed and begins signing. She signs with her hands low, near her lap, and she doesn’t body shift. She is slumped against the pillows more than in the previous video and sometimes breathes hard with effort. She is not making eye contact with the camera but looking to the side at her computer screen.]
Sharon: Now, near the end… [looking toward the IV pump]
Woman’s voice: Signing? Infusion?
[Sharon shakes her head no each time the other person speaks.]
Sharon: It’s hard for me to breathe. I’m using oxygen at 4 LPM [liters per minute]. Pain is up, muscles locked up. Burning pain in my right shoulder, diaphragm, and right foot. And I can’t move my legs. More difficulty moving my body. For example, grabbing, uh. . . . [Sharon looks around and reaches for her pill box next to her and picks it up and moves it closer to her, which seems to cost a great deal of effort.] Sharon: That’s work! [Laughter turns into coughing] It’s hard to think, to find the right words. I’m reading now — to remember to say, um…. This is how hr… no, herx from bartonella looks. Thank you. That’s it.
Woman’s voice: Cut.

How to Tick Check Your Dog (even if he’s big, black, and hairy)

I’ve been intending to write this post for over a year. There’s always something more pressing. However, my friend Karyn recently learned that her assistance dog, Thane, has Lyme. I’m very sad about this, although I take some comfort in knowing that my advocacy about Lyme occurring everywhere was part of the reason she got her dog tested, and that now he can be treated. Hopefully this post will prevent more dogs from getting tick-borne diseases.

Ever since I wrote a long, detailed post about canine Lyme disease for Lyme Disease Awareness Month in May 2010 stressing the importance of thoroughly tick checking your dog every day of the spring, summer, and fall, people have been asking me, “How do you do it?”

If you only want a very cursory explanation of how to tick-check, there is a new site devoted to ticks, dogs, and tick-borne disease in dogs, called DogsandTicks.com. The tick-checking information is on the disease-prevention page; better than nothing, I suppose, but I fear it will give people the impression that they are doing a thorough job when you’re not. The site also includes photos of ticks, how to remove ticks, information on various tick-borne diseases, and a FAQ.

If you want more detailed instructions on tick-checking your dog, read on!

People with dark-colored dogs, and long-haired dogs have expressed particular concern to me about how the heck to search an entire dog — especially if it’s a big dog. Having owned three consecutive large, dark, long-haired dogs (bouviers des Flandres), I know where they’re coming from.

I didn’t used to do systematic daily tick-checks until I got Lyme disease in 2007. That seriously changed my perspective on tick vigilance, particularly when my service dog, Gadget, too, turned out to have chronic Lyme.

Betsy and I thoroughly tick-checked Gadget (until he died, two years ago), every day. We carry on the tradition with Barnum, my one-and-a-half year-old puppy and service-dog-in-training.

There are certainly other things I’d rather be doing with the time and energy that go into tick-checking, but I’ve come to see it as required upkeep, like feeding or walking him. There are also a few side benefits that I’ll mention in my discussion.

Note: My tick-checking description includes things that are helpful to me, such as having an extra person, using my hands, good lighting, etc. I realize that if you are single, or blind, or don’t have good sensation in your fingertips you’ll need to modify how you check. It is definitely possible to tick-check by yourself (I do it often), as well as to do an effective job if you have limited vision or use of your hands. By creating a routine and becoming familiar with your dog’s normal bumps (whisker bumps, bug bites, nipples, warts and pimples), you will become much more able to identify ticks.

Please do not think that using “spot-on” flea and tick products (Frontline Plus, Advantix, etc.), makes tick checking unnecessary. This is not true. I have written in other posts that these products have several major drawbacks, including that they can cause chemical injury to people or animals sensitive to them. However, whether you choose to use them or not, they are not perfect, and your dog can still carry ticks. Consider:

  1. They do not repel or prevent ticks from climbing on and attaching; the ticks need to drink your dog’s blood before the product kills them. Ticks can feed on your dog for several hours before they die and fall off.
  2. These products are far more effective against fleas than ticks. There really is no product that is as effective against ticks as it is against fleas. They are hardy, adaptive, tough little bugs. Some are more effective against ticks than others, such as Advantix or Revolution. However, I recently spoke with Barnum’s breeder, who is an ER vet, and she told me that she would never put Revolution on her dogs, because she has seen so many serious adverse reactions to it in the ER. Revolution is the brand more vets in high-incidence areas like mine are suggesting as being more effective against ticks.
  3. Ticks evolve faster than humans can create poisons to kill them. Many vets and dog owners are reporting that products that used to be effective against ticks have lost their efficacy. This is particularly true in high-density tick areas.

So, choose whether or not to use these products, but don’t rely on them to make tick-checking unnecessary.

How about a summer hairdo?

If you have a long-haired dog that has hair instead of fur (such as a poodle or a bouvier), consider giving them a radical haircut in the spring and keeping it short through the fall. It is much easier to tick check a short coat than a long one.

Exhibit A: Gadget

Before . . .

Gadget, a gray brindle bouvier, stands on the patchy brown spring lawn. His hair is very long and shaggy, and he looks a lot like an Old English Sheepdog in terms of the amount of fur.

We let Gadget’s coat grow out in the winter.

. . . and After:

We fell asleep together

Gadget, freshly shorn, falls asleep with me after we’ve both been tick-checked.

Exhibit B: Barnum

Before . . .

Barnum lies on the bathroom floor. His coat is very long and shaggy and doesn't look well-groomed. He appears black except for a spot of white on his chin.

Yes, I know he looks disreputable here, but he’d just come in from the rain AND we were struggling with the wrong tools for too much coat!

. . . and After!

Barnum lies on a pale hardwood floor. He is close-cropped all over except for his face, which still has a bit of beard and fullness around the eyes. His brindling is very obvious, silver, white, gray, and black.

So sleek! And you can see all his lovely brindling this way, too! (Yeah, his legs and paws needed touch-ups. We did those another time.)

Barnum’s coat tends toward the texture, thickness, and consistency of thick, shag, wall-to-wall carpeting. And he’s black. It’s a gorgeous coat that’s a nightmare to check.

We always try to keep a short coat during tick season. It really makes a big difference. I know he doesn’t look as handsome, but I’d rather he’s healthy than gorgeous (and he’s adorable either way, of course). I’m sure bouvier aficionados gasp with horror at these extreme haircuts, but these are working dogs, not show dogs, and I have to do what works for me and for their health.

If you don’t have MCS and can afford it, you can get your dog professionally groomed, and then they will look a lot better than my dogs do! But, since groomers use a lot of scented products in their salons, that’s never been an option for me.

If you have a long-coated dog with fur (a “normal” long-haired dog), or a light-skinned dog (a pale-colored dog or one with a pink nose), or a dog that’s in the direct sunlight a lot, you might not want to cut down the coat due to issues of sunburn or skin cancer in the case of light-skinned dogs or due to problems with coat regrowth for typical-coated shedding dogs.

A good idea instead is to remove a lot of the bulk of the coat, use stripping tools. I am by no means a grooming expert — I only do what I have to to keep my service dog healthy and looking decent. I use the Mat Breaker and the Mars Coat King. If you want more information on this topic, ask a groomer or try a grooming forum online. Basically, the goal is to preserve the length for sun protection and the general form of the coat, but to thin/debulk the coat to keep your dog cooler as well as helping you feel the skin for ticks.

Lights, Blanket, Tick-Spoon!

Although it’s not known how long it takes for ticks to pass on Lyme and other tick-borne diseases (TBDs) — and different diseases are said to take differing lengths of time. A conservative estimate is that 24 hours is definitely enough time to pass on Lyme, while most other TBDs take less time. Rocky Mountain Spotted fever can be passed in just five hours. (I personally think that the 24-hour cut-off mark on Lyme is iffy.) Therefore, it’s important that you check at least daily, if at all possible.

It’s a good idea to create a routine, including what time of day you do tick-checking. This will help you remember to do it and will also make your dog more likely to accept it, because dogs usually find routine soothing.

Betsy and I like to tick-check everyone before bed, because it’s a time we’re most likely to both be available, and that way we’re not giving the ticks several uninterrupted hours of feeding during the night. But, if you’re a morning person, and that’s when you have the time, do it then. Or on your lunch break. If you miss your regular time, try to squeeze in a tick-check as soon as possible. Don’t give up in despair if you miss a day. This is an ongoing health maintenance routine, like brushing teeth or the coat. You do the best you can.

Part of the routine should be getting set up so that when you do find a tick, you have what you need. Before we start, I get something soft to sit on (because we usually check Barnum on the bathroom floor, and sitting on the hard, cold floor is too painful for me), our jar with hydrogen peroxide that we put the ticks into, our tick spoon (pictured below), treats, alcohol prep pads, and a pair of small, curved, blunt-tipped scissors that I use for grooming touch-ups on his paws and legs, particularly trimming the fur between his toes, which otherwise mats terribly. (UPDATE: I now use a much better tool for removing ticks, which are Tick Removal Forceps.)

Very thin, lightweight metal tool, about half the length of a popsicle stick, tapered on one end with a V-shaped opening. The length of the tool has a slight creased in the center, so that it is mildly concave. It's attached by a metal-bead key-chain to a plastic magnifying class about teh size of a penny or nickel.

This is the tick spoon we have. I find it easiest to use if I remove the magnifying glass, as it gets in my way.

On days when I’m too sick to work on the bathroom floor, we put a light-colored sheet down on my bed, and check Barnum on my bed. A major consideration for your locale is where the best lighting is. We turn on all the lights in my room right before we start the check. While you mostly use your hands to find ticks, it really helps if, once you have found one, if you can see what you’re doing.

The Side-Benefits to Tick Checking

Every person and dog is different, so how you go about the job will depend on what works for both of you. For example, Gadget knew as soon as the sheet went over the bed at night that it was “dog cuddling time,” and he’d jump up and lie down on his side and be super-relaxed. Since Gadget let me have my way with him, I usually started with his paws, just because they were an obvious starting point and therefore an easy way for me to be methodical: First the right, front foot, then all the way up to the elbow and armpit. Then the left front and up, then the right hind foot, etc.

With Barnum, because he’s more touchy about his paws and likes to start by sitting or standing and facing me (often licking my chin), I take a different approach. He enjoys having his face rubbed, so I do his whole head very thoroughly first, and when he’s nice and relaxed, I move to the legs and paws. (This is also helpful because most of the ticks I find on him are on his head and front legs and chest, so I am more apt to get them when I am at my freshest; my body and mind are not always at their best by the time I’m done.) He is getting more used to the routine now and has started to relax into lying down as we proceed.

If your dog is not totally comfortable or compliant with being touched all over, I have three suggestions, which you can combine.

The first is to follow Sue Ailsby’s “handling” instructions from Level 2 of the original Training Levels. (Scroll down to find “Handling.” The behaviors are listed in alphabetical order, so it’s below “Go to Mat.”) This slow approach really focuses you on making sure your dog is not just tolerating touch, but actually relaxing into it and enjoying it.

The second suggestion is a tip I got from another partner-trainer I met on the Level’s list. She taught her goldendoodle the names of all his various body parts (I hinted at this practice in this previous post). This can be handy at the vet or whenever you need to check a certain part. If it’s possible, the dog can offer you the part (chin, foot, etc.). However, even when the dog can’t actually present the part, by teaching him the name, he will know what’s coming and not feel “ambushed” when you — or someone else — suddenly grabs that part. For Barnum, the parts that it’s been most helpful for him to learn are “foot” (for the front paws), “hind” (for rear paws), “ear,” “lips,” and “tail.”

To teach the parts, just say the name you’ve chosen as you handle it, every time. You might want to reinforce the learning with a tidbit for relaxing into your touch or holding still upon hearing the word.

The third is if you have a squirmy puppy or other dog who is just too excited to hold still, you can use the bio-feedback exercises from Control Unleashed. This information was a godsend for Betsy and me when Barnum was a puppy who could not hold still for an instant — or so we thought. I had been dubious that I’d be able to click for such fleeting behaviors as blinking, but it really worked. I clicked and treated for eye blinks, soft/sleepy eyes, yawning, lip-licking, exhaling/sighing, lying down, any relaxed body posture, etc. I encouraged these behaviors by blinking, giving him sleepy eyes, yawning, lip-licking, exhaling, etc. We would start out with a wriggly puppy bouncing all over, and end up with him lying on his side!

Whatever you do, try to set up a routine that is as comfortable and pleasant as possible. If you and your dog like music, put on some music. If you’re most comfortable with a grooming table or bed, use those.

That’s because two side-benefits of daily tick-checking are:

  1. A good way to monitor your dog’s health. If you are familiar with every lump and bump, when a new one arises, you will know. Since you need to check your dog’s lips, you will also notice your dog’s teeth, gums, breath, and other indicators of health. On the other end, checking the anus can show you if there is poop that needs to be cleaned away or anal glands to be expressed, etc. I often use tick-checking time to trim the hair between toe pads that otherwise gets matted very easily.
  2. If you work at making sure this is a very familiar, enjoyable experience, your dog will come to view it as a treat. We include a lot of massaging of favorite parts (back of the neck, behind the ears, front of the chest), sweet-talking, and treats. If your dog gets over excited by treats, you might not want to use them, or use low-value treats. The picture above of Gadget sleeping between my legs really was taken immediately after a tick check, when we were both so relaxed, we fell asleep (and Betsy took the picture without me knowing it until later).

It used to be that we couldn’t get Barnum to lie down and relax for his tick check. However, after over a year of handling practice and lots of treats, behold a recent tick check. First, I check his ears. . . .

Sharon leans over Barnum, who is lying on the bed, his eyes shut, head resting between his paws. Sharon is holding one of Barnum's long ears in each hand, rubbing the flaps between her fingers.

His ears are his most sensitive body part, too!

Then Betsy checks his back and sides. . . .

Barnum lying on the bed on his right side. His right foreleg is stretched way out from under his head, his eyes are closed, and his head looks very floppy and relaxed. His left foreleg is stretched out lazily in the other direction. Only Betsy's arms are visible, one hand on Barnum's ribs, the other on the back of his neck.

“Ah, nobody gives a neck massage like mommy Betsy. . . . Zzz.”

The tick check: Feel your way. . .

Here’s how to actually conduct the check.

As to where to start, that’s up to you. If you want to start with the places you’re most likely to find ticks, that is the head, especially the ears (inside and out), then the whole rest of the head, including eyelids, eyebrows, cheeks, top of the head, chin, and lips. Then the neck (take off the collar so you don’t miss anywhere), the chest, shoulders, armpits, front legs (including between the toes), then back legs.

Or, if you want to work in a more orderly fashion, here’s how I usually do it:

Starting with the feet (if your dog is amenable), put your fingers between each toe (I do forefinger under and thumb over the webbing of the foot) and feel for bumps. You are checking for ticks between the toes on the underside of the paw as well as on the furred side, above. Likewise between the toes and the “heel” pad. A lot of the time, I pull out burrs, sap, etc., under the feet and between toes, or trim out mats.

If I feel anything there that I think is a tick, I have found it impossible, even with a docile dog, to use tweezers or a tick spoon in that location — there’s just not space to angle. Instead, find where the tick is attached (where its mouth parts disappear under the skin), grasp there — using your best fingernails, if that’s an option — and pull it slowly and steadily until you have it (and whatever hair came along) out of reach.

I’ll get to disposal of ticks and tick spoons, etc., after explaining how to check.

Feel the top of the foot and heel, too, and then work your way up the leg, running thumbs and fingertips up the skin, against the grain of the fur. I use an up-and-down motion sort of “massaging” or “scouring”with my fingertips to make sure I’m feeling beneath the fur to the skin, and covering all areas. Make sure to get your fingers in the indentations and grooves between the bones.

Definitely check the elbow and armpit. Lift the leg forward slightly to see the underside of the joint, if possible.

Then you can do the rear feet and legs the same way — checking between the toes and moving up the leg. While you’re back there, remember to feel the inner leg and groin, and in males, the penis and testicles. (It’s not common, but I have found ticks on the penis — gross!)

Here is where you will probably mistake a nipple for a tick, because there is a pair on either side of the penis, which is not where humans are used to thinking of nipples spending their time. Everyone who’s ever checked one of my male dogs has made this mistake. It’s very easy to do! If you’re not sure if it’s a tick, check for a similar bump further down, along the milk-line, or across the way, on the other side. If there is another little dark bump parallel to it, it is probably a nipple! Taking a good, close look helps, too. Look for legs! (Ticks have legs. Nipples don’t.) Also, over time you will get used to where each nipple is and how it feels. Don’t try to pull them off — the dogs don’t like it! (That’s one way to tell, if you’re uncertain if it’s a nipple or a tick, don’t use tweezers or a tick spoon! Grab with your fingers and pull gently, if the dog objects, it’s probably a nipple!)

Start at the base of the tail, and feel there. (This is where I save some time — not much tail on a bouvier!) Check the tail much like it’s a leg, feeling along the whole length. Now, the fun part: Lift the tail and examine the anus. Sometimes you have to run your finger around it if you can’t see it well. If you have a furry dog, you might have to trim the fur. If you’re squeamish, use medical exam gloves. We have found ticks on the anus. Truly gross. Throw out the gloves or wash your hands, then continue!

Ears, neck, and head are very important. Feel the entire ear, inside and out, and also get a really good look inside the ear. I use the opposing finger and thumb, again, for both sides, doing the entire ear. I also put my finger into the external ear canal (not deep!) because sometimes they hide in the ridges there. Rub with your fingers, like you were shampooing your scalp, the whole head and face. Check the lips, including between nose and lips, and look at the eyelids and eyebrows. (Just this year, I have found ticks on Barnum’s eyelid — right next to his eye — three times.)

Take off the collar to check the neck and chest, again, using the “scouring” motion with your fingers. Do his entire flank and as much of his back and belly and abdomen as you can reach (depending on how he’s standing or lying.) Hopefully he’s snoring by now! Then, wake him up! While he’s standing, if he will stay up, do the massaging with all your fingers on his back, which you probably couldn’t see/reach that well when he was lying down.

Then, get him on his other side, and repeat.

How to Remove and Dispose of Ticks

The best tool to remove ticks in most cases is a tick spoon, or tick tool, like the one above. Robbins Pet Care, sells a good, inexpensive tick spoon, Tick Tool, which also comes with a tick ID card and magnifying glass. Amazon carries it, too, as do other places, but I have found it cheapest online at Robbins. I have found that the tick spoon is superior to tweezers. It’s easier to handle, and you’re less likely to squish the tick accidentally.

The tool comes with instructions for use, but it’s not difficult to figure out — you slide the slit of the tool against the dog’s skin so that the tick is in the slit of the tool. You keep sliding all the way until the tick is in the very narrowest part of the spoon, and then you slowly, steadily pull up. The nice thing about this tool, too, is that it usually keeps the tick trapped in the slit while you get your stuff together to dispose of the tick.

There is one time when the tick spoon does not work well, which is unfortunate, because it’s the most important time: removing very small ticks, such as deer tick nymphs. Because they are so small, sometimes the slit in the spoon is too big to catch them. This can be made more difficult if they are slightly engorged, because that makes them squishier (and deer ticks already have a softer exoskeleton than a dog tick). If you try using the tick spoon on a really, really tiny tick, and you can’t get it, my best advice is to use your fingers. Grasp at the very base, right against your dog’s skin, and pull.

(Update: Tick Removal Forceps work better because they allow me to remove any size or type of tick, even very small ticks, including deer tick nymphs. Here is my review of the forceps.)

As for disposal, some things not to do: Do not put it in the trash can. It will just crawl out. Do not squeeze it between your fingers or smash it with a rock or pierce it with scissors, because ticks are filled with harmful microorganisms, and you don’t want those splattering out. Although many people flush them down the toilet, I don’t trust flushing a live tick down the toilet, just in case it manages to climb out. They can survive and float in water a long time, especially if they have something to grab a hold of.

A pretty safe method is to put it in a jar of rubbing alcohol with a tightly closing lid. Alcohol kills them pretty quickly. I am sensitive to alcohol, so we use hydrogen peroxide. They live for a few days in the jar, but since they’re contained, they’re no longer a threat. It doesn’t kill them right away, but it does eventually. You can also put it in a tightly sealed Ziploc bag. They will die due to drying out (not starvation; they can go ridiculously long without feeding). On a hot day, they might die within twenty-four hours or less. This is also the method to use if you want to send the tick away for testing.

If you can easily get back to the spot where you removed the tick, use a disinfectant, such as an alcohol prep pad or BZK to clean the area, although it’s important not to let your dog lick alcohol, as it’s poisonous to them if ingested. Make sure to wash your hands thoroughly, as well.

I hope this has been helpful! Please spread the word to everyone you know with a dog!

– Sharon, the muse of Gadget (I loved dog-cuddling time!), and Barnum, SDiT (I’m waiting for my massage!)

Service Dog for Body and Mind: A New Skill

This post is dedicated to the memory of Laura Hershey.

I’m working on a new skill with Barnum, and it’s going well. It’s not a skill I’ve trained with my previous service dogs, so it took some creativity to figure out. I’m pleased with the progress we’ve made, and I even have a couple of training sessions on video (see the end of the post for the video).

Normally, with a new skill to reveal, I’d have pounded out this post as fast as I could. Instead, I’ve been procrastinating, nervous as hell, for several weeks, about writing.

Well, no. It’s not the writing I dread so much as the moment I click the “Publish” button.

Here’s a hint: This post is for the March Blog Carnival of Mental Health, hosted by StaticNonsense. The theme is “Relationships.”

That lets the cat out of the bag (or the dog out of the crate), doesn’t it?

Due to chronic Lyme disease and other chronic infections from tick-borne diseases (TBDs) — my coinfections are Babesia and Bartonella — I have been intermittently psychologically altered since 2007. Admitting this publicly is a “coming out” of sorts for me.

I thought this would be an appropriate post for the topic of “relationships,” because the changes in my moods, behavior, and personality in the last few years have greatly affected my relationships with my friends, my health care providers, myself, my previous service dog, Gadget, and now, my service-dog-in-training, Barnum.

This is not my first “coming out.” I came out as bisexual at age 18, and then again as lesbian at 20. Older, wiser queers told me that coming out is a lifelong process — that you are always meeting new people, and deciding whether to come out to them.

This is true, although by now, I’ve been out as queer for most of my life. “Coming out” about having chronic, intermittent mental illness is a whole ‘nother ball of wax. It’s taken me until almost just this minute to admit it to myself, let alone naming it publicly.

I usually use a lot of euphemisms and skate around the issue with comments like, “I’ve sometimes experienced psychological symptoms due to Lyme.” Or, “I have neurological symptoms that affect my mood and behavior.”

I don’t like applying the term “mental illness” to myself. That realization alone — my queasiness at identifying this way — is  painful: I’m a disability rights activist. I believe in cross-disability unity and support. Many of the people I love most have psychiatric struggles, and I’m not aware of judging them or viewing them as “less-than.”

I have long considered myself an ally around mental-health oppression. How can I have so much internalized ableism about mental illness?

Part of the answer has to be that it’s always different when we become more of a “them,” than an “us.” Like one feminist said to another, “I have nothing against lesbians. I just wouldn’t want my daughter to marry one.”

Laura Hershey*, the writer and disability rights activist (and lesbian), wrote a poem which has become something of a disability-rights anthem. It’s called, “You Get Proud by Practicing.” I believe this to my core. I got proud of being a dyke by coming out proudly, again and again.

It didn’t hurt that the reason I’d figured out I was a lesbian was that I’d fallen in love for the first time. Falling in love is often the reason women realize they’re gay. Disability is not as easy to fall in love with.

I’ve had physical disabilities since 1995. Here, again, I had some practice and preparation for being proud, having been a nondisabled member of the disability rights community before getting sick, myself. That helped me to accept my own disabilities much more quickly and fully than if I’d started from scratch.

While the disability community is my home, and I am proud of being part of it, there’s no denying that my illnesses cause a great deal of physical suffering and are a source of loss and limitation. I don’t celebrate my pain, exhaustion, and insomnia. Nonetheless, disability is my identity. It is a part of me, and always will be, even while I try to regain my health.

My pride as a member of the disability community makes it harder to admit that from 1995 until recently,  I took satisfaction in saying that my disabilities were solely physical and cognitive.

For example, I know plenty of people with multiple chemical sensitivity who have reactions to exposures that include crying, depression, anxiety, or anger. I thought that because my MCS didn’t include those symptoms, I was special, somehow. I thought it made my MCS more “real.”

I’m trying to have compassion for myself. I’m a member of so many marginalized groups as it is; nobody chooses to get hit with another pile of stigma.

As I own my regrets, I try to embrace what these hierarchies I unknowingly bought into tell me about my own feelings of self-worth (or lack thereof). Writing this post is a big step for me in practicing being proud.

Even more to the point, the disabilities I’ve had most of my adult life have required me to convince multiple doctors (and other gatekeepers of disability services), for years on end, that my illnesses are “real” (i.e., not psychosomatic), in order for me to receive appropriate diagnoses and treatments.

Of course, this dichotomy is false and damaging. Mental illnesses are real, too. And having a psychiatric condition does not rule out a physical condition, or vice-versa.

The fact remains, though, that for people with CFIDS, MCS, and Lyme, the choice is often an untenable one. Either admit some element of psychological symptomology and be treated like a “crazy” and receive no medical care (and therefore no financial or other supports) — or worse, receive damaging, inappropriate treatment. Or, vigorously deny any emotional suffering that might accompany the physical illnesses, lest it eclipse all other forms of illness or disability.

It should be clear by now that my relationship to myself and to my healthcare providers has been pretty fraught around the issue of mental health. That’s just the tip of the iceberg.

The changes to my mood, personality, and behavior began during the summer of 2007, when I began treatment for Lyme disease. At the time, I didn’t know about Herxheimer reactions (known informally as “herxing”).

This is the term for severe worsening of symptoms when antibiotics or antiparasitics kill off pathogenic microorganisms, a process that releases toxins into the body. Herxing was first noted and named in syphilis patients, which is appropriate, because the spirochete that causes Lyme is very closely related to the one that causes syphilis.

Because the infections I have can affect all systems of the body, herxes are usually multi-symptom and multi-system. The list of symptoms I’ve experienced when herxing is too long to attempt, but some of the standouts are migraines, body pain, severe weakness/exhaustion/immobility, memory/thinking impairments, vocal-cord apraxia (inability to speak), and, of course, the psychiatric symptoms.

Before I learned about herxing, and how severe and arduous it can be, I started each new treatment at the full dose, because I wanted to kill the damn bugs and recover as fast as I could. Little did I know how this would damage my life.

When I was receiving no treatment for nine months, because I couldn’t convince any doctors I still had Lyme, my psych symptoms got worse. I had major mood swings, rage, agitation, suicidality, and a general feeling of disconnection and hopelessness.

Then, in October 2008, I went on serious Lyme and babesia treatment for the first time. I think my friends and I all expected me to improve.

Instead, I herxed hard for over two years, starting with the initial Lyme and babesia treatments, and then adding additional ones, as well as treatment for Bartonella, which my doctor and I suspect is the biggest culprit in my psych symptoms. The result of all this was that previously dormant symptoms emerged and existing ones got worse. And stayed worse. Continuously. It was hell.

It’s hard for me to remember that time. This is literally true, due to neurological damage, but I also just don’t want to relive it, even in memory, even for a moment, because the physical and emotional pain and suffering were enormous.

The psychological symptom that has been the most persistent, and which I think has cost me the most in lost and damaged relationships, is agitation.

I had always assumed “agitation” was anxiety, because I think that’s how the word is used in general parlance. However, when I read some psychiatric case studies of people with Bartonella, their description of many of the psychological symptoms I had, especially agitation, was right on target.

When I experience agitation, the best way I can think to describe it is as obsessive rage, with an undercurrent of low-level anxiety. I get really angry about something that may or may not be a big deal, and then I just get stuck in the rage.

The only definition I’ve found for agitation was among people with traumatic head injury. This feels pretty appropriate, because my TBDs have caused brain damage, though of the closed-skull (non-traumatic) type. Here’s the study’s definition of agitation:

Physical aggression, explosive anger, increased psychomotor activity, impulsivity, verbal aggression, disorganized thinking, perceptual disturbances, and reduced ability to maintain or appropriately shift attention were rated by at least 50% of the sample as very important or essential to agitation.

This gives a relatively clear picture of what my agitation was like when it was at its worst, with the exception of the physical aspects (wasn’t up to much motor activity). Thank goodness, my agitation has not been nearly that bad in the past year or two.

However, when it was bad, along with all my other illness issues, I was in a state of ongoing crisis. The result was that my psychotherapist of many years terminated with me, and my two best friends — who were my family of choice — and three additional friends, ditched me. There was a ripple effect, as I lost the larger circle of friends and acquaintances who were associated with the closer people who abandoned me.

During the worst struggle of my life, I lost all the people I could see in person, except my partner, my parents, and my personal care assistants. Now, I only have friends via phone or email.

I also lost myself.

I hadn’t known this was possible. I’d always had a very strong sense of self, and I’d worked hard to become a person I could like and respect. Lyme tossed that out the window. Suddenly, I was a miserable person who felt out-of-control of myself and my behavior, and despised myself almost as much as I despised those around me.

My saving grace was Gadget. He was always his same, normal, doggy self, and he didn’t seem bothered by my moods. When I was suicidal and had convinced myself that I was a burden to everyone, that they would be relieved if I died, I reminded myself that I was not a burden to Gadget, that he needed me as much as I needed him. I told myself that I had to stick around for him.

In many ways, he saved me during my worst times; not only did he assist me as my service dog, he listened to me and understood me when nobody else could. He provided a soft, warm presence. Most healing of all, when I was being abandoned right and left — and even those who stayed in my life let me know how difficult I was — Gadget didn’t judge me. He never blamed me for being sick, whatever form it took. He was a dog.

He just was. We just were. I needed that.

Losing that source of love without judgement, when Gadget died, was devastating.

A lot has changed since the worst two or three years of Lyme. For one, I am “me” much more of the time. I guess you could say I’m finding my new self, now.

I’m not herxing all the time anymore. That is a blessing. Being able to laugh, to “let things go,” to be glad I’m alive, to feel gratitude and joy, to be relatively stable in my moods — all this, and more, I can never take for granted again.

However, even when I am herxing, I am much more aware of when and how much I’m altered, and I have many more tools to manage the symptoms. I have a new therapist; I’m building a support system by phone and internet; I have more strategies to cope with “the crazies,” as I call them.

A big strategy is to isolate myself from other people, as much as possible, so that I don’t take my rage out on them. I try to distract myself by watching a DVD on my computer, or dog sports on youtube, or listening to a book. I tell myself not to throw things, because they will break! (This seems obvious, and yet, when I had a bad agitation period and threw something, I was surprised that it broke. I guess that’s the impulse-control aspect.)

I remind myself that it is not really “me,” it is just herxing, and it will pass. I do deep breathing, but in all honesty, I don’t think that helps much. Meditating would help, but I have trouble doing it without a partner.

And now I have a new tool, possibly one of the best in my toolbox. You have probably guessed that it is Barnum!

Like my two previous SDs, Jersey and Gadget, Barnum will primarily be trained in physical service skills, including labor-saving tasks (retrieving, opening and closing doors and drawers, turning lights on and off, getting the phone, helping me dress and undress, providing stabilization for transfers), and memory/cognitive issues support, such as sound alerts (e.g., waking me when my infusion pump alarm or timer go off).

In addition to these tasks, it occurred to me recently, when I was experiencing a bout of agitation (because I am on a new antibiotic and herxing again — fun!), that maybe I could train Barnum to help me get past it.

For some reason, my agitation expresses itself the worst with people, and the closer I am (emotionally) to the person, the more I fixate on them as the source of my rage. (Even if a little voice is telling me that I’m being irrational, I sometimes get enraged at the little voice. Or, I feel ashamed for being irrational, while continuing to feel enraged, which is the worst of all.)

I also, as I indicated above when I said I have the urge to smash thing, can feel angry at inanimate objects. However, even when I’m agitated, I generally feel amused by, or loving towards, Barnum. In extreme cases, I feel distant from him, too, but when that happens, I just give him something to chew, or he takes a nap.

A couple of weeks ago, I was having bad agitation, but I was able to think clearly enough to get curious: I decided to experiment with behaviors Barnum might be able to perform that would interrupt or soothe my agitation.

I had already taught him “chin,” which means “hold your chin in my palm.” I’ve been shaping that behavior for duration as well as for force/pressure. (I like him to really press his chin into my hand, not just rest it lightly.) I have started to use the cue for other locations, too, so I can say “chin” and point to my thigh, and he will put his chin on my thigh.

I taught him “chin,” in part, because I thought it might be useful for psych symptoms. I thought it might feel grounding to have that contact. However, I knew I’d have to wait until I was having the symptoms to try it out, because one of the most challenging aspects of managing my psych symptoms is that I can’t tell how they’ll manifest when I’m not in the thick of them.

We tried the following behaviors, some of which I cued, and some of which he offered, through free-shaping:

  • Licking the back of my hand. This felt good, but it’s not something he could sustain, and since my agitation can last from 15 minutes to several hours, it didn’t seem worth pursuing.
  • Breathing into my palm. The tactile combination of the warmth, moisture, and rhythm of his breath was grounding, but again, this is really not something he could sustain, particularly because it works best when he breathes out heavily, in a sigh or snort, and if I asked him to do that repeatedly, he’d end up hyperventilating!
  • Chin-in-palm, which he knows well, wasn’t enough pressure — not grounding enough — to really dispel the agitation. It felt too “small” for the magnitude of my feelings.
  • Resting his forelegs over my calves. The first night we tried this, it did make me feel a little better emotionally, but I was experiencing much less pain in my lower legs than I normally do. I have trained Barnum not to step on, or lie across, my legs, but I was letting him experiment while we free-shaped. I thought it probably was not a good long-term solution due to the body pain issue. Sure enough, we tried it again the next night (because I was agitated several nights in a row), and the second night, my calves, ankles, and feet were burning, so I did not want him touching any of those parts.

By this point, we had not come up with anything that really felt “right.” However — and this is a big however — the process of training, itself, completely turned my mood around!

For one thing, clicker training is so much fun, it’s incompatible with staying grouchy. This is especially true for free-shaping; I find it impossible not to be charmed, proud, and delighted when Barnum offers ideas of his own. (I explained free-shaping in this previous post.)

Furthermore, clicker training requires total concentration and absorption. It is a mental, emotional, and physical sport:

  • Physically, both hands are busy, one with clicking, the other with treating, and sometimes a hand is needed for targeting or luring, which demands even more work (particularly because I do not have three hands).
  • Precision timing is a must, which places great demands on body and mind (especially since hand-eye coordination has never been my strong suit).
  • It’s also important to stay completely calm and focused so that I am not unintentionally cueing behaviors or otherwise telegraphing undesirable messages.
  • Finally, it’s a dog-training truism that you cannot train angry. It’s just a bad, bad idea. Thus, mastery of my emotions was not so much the desired outcome as the prerequisite to make the attempt.

Another benefit that I had not anticipated was that, because we were experimenting, I was constantly checking in with my body/mind about whether, or how much, Barnum’s contact was affecting my levels of anxiety, tension, and the like.

As for the obsessive aspect, I didn’t have any time to obsess — I was way too busy, body and mind, trying to get just right that split-second timing of the click and that treat delivery (speed and location), deciding when to raise the criteria, and on and on. When we were done with our session, I found that my rage had just melted away.

While clicker training often looks simple and repetitive (and in some ways, it is), if you’re doing it right, you are constantly not just reacting — which is one form of decision-making — but also planning your next few clicks. In this way (simple, yet complex), it reminds me of martial arts, which also demands great mental, physical, and emotional control and energy, and where you are both reacting and planning several moves ahead, at the same time.

When trainer and trainee are both problem-solving in a fluid, yet rapid-fire, state, it’s exhilarating and challenging! There is just no room to ruminate on rage when your mind is so engaged otherwise.

After a while, I decided we both needed a break. He happened to lie with his body all along my left side, particularly against my outer thigh, which is numb from some nerve damage, so it’s one of the few places that doesn’t usually hurt a lot.

Also, my thighs, in general, are not usually nearly as painful as my lower legs, so when he also flopped his head onto my thigh, the weight of his head wasn’t problematic. In fact, I realized this was the behavior I wanted to capture. With his body against my side and his head on my thigh, I felt better right away.

I went right back to reinforcing and shaping in order to capture the behavior. (Fortunately, I keep a bag of dog treats in my bed at all times.) Barnum was very relaxed, too, and often kept his head on my leg and just let me pop pieces of hot dog right into his mouth, allowing me to click with a very high rate of reinforcement.

At one point, he rolled his shoulder partway onto me, so instead of just his chin, he pressed with his cheek, letting even more of his big head rest very heavily on my thigh, which was perfect. I click/treated as many repetitions of that as I could. I tried to shape for a very heavy head, and also reinforced heavily for using his cheek instead of just his chin.

The fact that training itself is (psychologically) therapeutic for me is a big plus. The first night we did “agitation-interruption training,” I started out barely able to breathe for rage. By the end of our first session, I was laughing and beaming. Really!

Unfortunately, there’s a physical cost. I’ve written about this before: Whatever is good for me physically is bad for me emotionally, and vice-versa. This is no exception. I was totally flattened by pain and exhaustion the next day. But, it was worth it, that time around.

(Note: If you’re having trouble accessing After Gadget video via email or on an iPad, you should be able to view them on the web and/or from a “regular” computer without a problem.)

Here is a video of parts of the second and third training sessions:

There is no dialogue in this video (partly because my voice wasn’t working the second day), however a captioned version is available here, so you can see when the clicks occur.

Read a transcript/text description of the video here.

We have now done three or four sessions on this skill, and I’ll see where it leads us. I anticipate that, although he seems to be enjoying snuggling up with me at the moment, once the weather warms up, he might not want to spend time on the bed. Barnum really is a cold-weather dog. He almost always seeks the coolest possible location. Pressed up against me in bed is about the warmest place in the house. But, we’ll just keep on noodling with it, and see how we do.

Once again, my relationship with my service dog (or SDiT), is turning out to be some of the best medicine:

For, what is training after all, but practicing? He is helping me practice becoming “unagitated.”

Further, when Barnum and I are working well together as a team, when we are training, I feel so proud of him that some of it spills over onto me.

Now I have a way of approaching my scariest, and in some ways, most painful symptom, the one I’ve been ashamed of for so long, and finding it less scary. Finding that there is something I can do about it, through my teamwork with Barnum.

Thank you, Barnum, for helping me to get proud (and chill out), by practicing.

Thank you to my readers, for helping me find the courage to write about this topic. Please support the others participating in the Blog Carnival of Mental Health!

– Sharon, the muse of Gadget (I had a few phobias, but otherwise I was supremely mentally healthy), and Barnum (SDiT and mental health practitioner)

*I’m sad to report, to those who don’t know, that Laura died a few months ago. I was so shocked when I heard. She had been a role model and a source of learning for me since I first started studying the disability rights movement, 20 years ago. A little over a year ago, I was fortunate enough to work with her directly, as she spearheaded the protest of Jerry Lewis’s “Humanitarian Oscar” for his MDA telethons. She was so gracious and encouraging in my efforts to provide “ground support” by doing what I could online, from bed, since I couldn’t go to Los Angeles, like she and others were. I haven’t written about her death, because I have been at a loss for what to say, until now.

My Lyme Disease Is Not the IDSA Lyme Disease – Sharon Wachsler

This past Wednesday, December 8, 2010, the Chicago Tribune published a lengthy article called “Chronic Lyme Disease: A Dubious Diagnosis.” This article is so biased and filled with misinformation, I need to respond. (As  you’ll see at the bottom of this post, I’m not the only one.)

The article’s central claim supports the stance of the Infectious Disease Society of America (IDSA) that chronic Lyme doesn’t exist.

[The IDSA concluded that there is] “no convincing biologic evidence” for a Lyme infection that persists and continues to sicken despite the recommended treatment, usually a few weeks of antibiotics.

My experience, and the medical evidence that is part of my experience, contradict this dangerous and preposterous notion. Here is my own Lyme disease story (which will act as Part II of the Lyme Awareness Month post from May 2010, when I promised to describe how Lyme has affected me, and what you should know about it).

Summer of 2007

My case is a little different from the typical “How I Became Disabled/Ill” narrative because I was already disabled by chronic illness before I got Lyme disease. I usually try to avoid comparisons among disabilities, but I have to speak the truth: What I have gone through with Lyme disease has been much, much worse than what I experienced in my previous decade of chronic illness. I would gladly have my other illnesses double- or triple-fold more severe if it would rid me of Lyme. I’ve lost parts of my life and myself to Lyme I didn’t know it was possible for me to lose.

Here’s how it started. One day, I was sitting on the couch watching TV, absent-mindedly running my hands through my hair when I felt something sticking out of the nape of my neck. After living in the severely tick-infested area of rural Western Massachusetts with two dogs, I immediately knew this was a tick, although it felt rounder and much smaller than I was used to. Nevertheless, I wanted it off me; I didn’t want to wait to mess around with mirrors and tweezers, so I handled it as I did the dogs’ ticks — I grasped it at the base and pulled.

I heard the “pop!” that occurs when a tick is removed that’s been embedded, and as I had pulled at an awkward angle — my hand behind my head — I dropped it. Into the sofa. The falling-apart, loose-foam, shredded-upholstery black-hole-of-a-sofa. I tried to find it, but I never did.

I was pretty sure it had been a tick, but I wanted to see. I was hoping I had just pulled off some random, weird thing that was not a blood-sucking insect. However, when I checked in the mirror (two, actually, since it was on the back of my head so I couldn’t see it without a second reflection), there was a large, dark-pink raised area with a bloody center — just like how it looks if I pull an embedded tick off my dog. I cleaned it and hoped for the best.

I checked it again over the next couple of days. The area was flattening out, the scab was healing. My (mis)understanding at the time was that if one contracted Lyme disease, a bull’s-eye rash would appear immediately at the site. I saw no rash, so I forgot about the bite.

About a month later, I developed joint pain in my fingers. Out of all the symptoms I’ve had with all my health issues, I’ve never had my joints bother me. The pain was bothersome, but not severe. However, I was a writer, and I relied on my hands for work as well as to make up for functional limitations in other areas caused by my disabilities. I was very protective of my hands. I just didn’t want anything to get worse. Fortunately, I happened to have a doctor’s appointment coming up.

At my biannual appointment with my primary care physician, I mentioned the joint pain. She thought it was probably a worsening of my other conditions, but suggested a couple of tests, including one for Lyme. That set off a bell in my head. I remembered that thing that I had pulled off the back of my head. When I got home, I grabbed my hand mirror and went to look in the mirror over the bathroom sink. I parted my hair and looked at the area where the bite had been. It was flat now — no more bump — but it was definitely discolored. It was red.

I looked up Lyme disease online and discovered that the array of symptoms I’d been experiencing in the last couple of weeks were classic of Lyme — not just the joint pain and the rash, but the new kinds of headache and vertigo, the drowsy fatigue, the constant ache in my neck and shoulders, and more. Crying, I got out my dog-grooming clippers and shaved off the hair in that area so I could be certain of what I was looking at. I compared it to the pictures of erythema migrans (Lyme rashes) I’d seen online. Bull’s-eye.

Well, metaphorically, at least. Some EMs look like bull’s-eyes, but they are just as likely to be roundish, red rashes. I knew this was serious.

Large reddish-pink splotchy rash on the back of Shaved headLyme Rash

My Lyme rash (EM). The clear spot in the middle is where the actual tick was attached.

I called my PCP and told her about the tick bite and symptoms. Because I’m allergic to tetracycline, a relative of doxycycline, the frontline drug for Lyme, the doctor prescribed the second-best antibiotic for early Lyme, amoxicillin. I read all the comforting information by the Centers for Disease Control (CDC) and the IDSA that Lyme, when treated promptly, responds quickly and completely to appropriate antibiotics. I had heard of chronic Lyme, but my impression was that this was a disease that only occurred if one went years without treatment after infection. I also thought of it as a mild disease, more of a nuisance — some joint pain, maybe a little fatigue, but not a big deal.

“Something Curable and Non-Controversial”

I focused on the information on site after site that said prompt diagnosis and treatment would cure me. I even told my friends and family, who were upset and scared to hear I’d contracted Lyme, “At least I have something curable this time!”

I meant it. Yes, I was scared. I didn’t like having a frightening disease given to me by a disgusting tick, but I felt almost giddy with relief that now I would be on the road to recovery. This was just a bacterial infection. Antibiotics kill bacteria. Within a couple of months, I’d be back to normal.

It was also a nice change of pace to have a disease that seemed to be without controversy. Lyme was caused by a known microbe; nobody disputed that. Unlike my other diseases, whose etiology was still being pieced together, this time I would not have to hunt for a physician who knew how to diagnose and treat me.

I stayed on the amoxicillin. Initially, I got much sicker (which I now know is a Herxheimer, or die-off reaction), and then most of my symptoms started to improve. But not all of them. My PCP kept me on amoxicillin. Weeks turned into months, and some of my symptoms, including my rash, persisted. Different antitibiotics just made me worse. I became much sicker.

Thank God I had that rash.

Doesn’t that seem like a strange thing to say? That’s because in the hellish time to come, the rash would be the one piece of incontrovertable truth that the tick bite had occurred and done damage. It was proof of infection, proof that something wrong was left behind, something visible on the skin.

In November, I became suddenly and drastically worse. The light- and sound-sensitivity and headaches became all-consuming. The musculoskeletal pain was unendurable. I developed neurologic symptoms, including intermittent vocal-cord apraxia (inability to speak) and functional paralysis in my arms — and more often — my legs, severely compromised cognition, and behavioral and mood changes.

I was so weak that I couldn’t leave my bed and had to use my powerchair to get to the bathroom. I needed help to brush my teeth, eat or drink, get in or out of bed. I had trouble breathing and eating; I lost thirty pounds.

I started searching for a doctor who could help. None seemed able to intervene because none of them were convinced, entirely, that my illness was caused by Lyme. Why? Because all of my Lyme tests were negative. I soon learned that this was meaningless; Lyme tests are notoriously inaccurate for producing false negatives. I was tested over and over for multiple tick-borne diseases by multiple doctors as I started seeking more answers. All bloodwork returned “inconclusive” or negative.

However, the CDC officially states that blood tests are not to be used as primary diagnostic tools for Lyme. The IDSA and CDC both say that the presence of an EM rash is 100-percent proof of Lyme infection, and that treatment of patients with EMs should begin immediately; blood tests in such cases are optional.

That’s what they say. Officially. However, none of the doctors seemed to know this. . . .

“Lyme Can’t Cause This.”

I was desperately ill and scared. My friends and family were afraid that I was dying. Yet nobody could come up with a diagnosis. Physical exams and blood tests showed abnormalities, but nothing gave a conclusive answer as to the why.

The only thing we knew that had been added to the mix was Lyme disease, and that was now being dismissed because (1) all my blood tests for Lyme were interpreted as negative (despite that all my lab results say right on them that the test is not conclusive and that clinical evidence must be taken into account), and (2) my doctors were as uninformed about Lyme disease as I’d been.

“Lyme can’t do THIS,” I heard again and again, as each doctor rushed me out of his or her office. Most knew something physical was truly wrong, yet I still heard suggestions for psychiatrists. Doctors who had known me for years treated me like a scary stranger. I was told to find out what was wrong and then come back. Some refused to see me altogether.

Yes, I had had Lyme, the doctors agreed, that was not in dispute, but since I’d been treated for it (actually, according to IDSA standards, I’d been overtreated for it), it could not possibly be the cause of my myriad symptoms. My Lyme was cured. So, all of this suffering and blatant physical dysfunction that occurred immediately following infection was just a coincidence. Besides, everyone knew Lyme just caused some joint pain, headaches, Bell’s palsy, etc. It didn’t make you unable to speak or lift your foot. It didn’t create such agonizing pain that it literally immobilized you. It didn’t destroy your life, like whatever this was.

Thus, in February 2008, my Lyme doctor stopped treating me. She knew I was sick, but without a positive test result, she said she couldn’t “justify” continuing to prescribe antibiotics. I didn’t know at the time that doctors who treated patients with Lyme beyond the IDSA’s “guidelines” were in danger of losing their licenses, losing insurance coverage, and even criminal prosecution. I just knew I was being abandoned.

I spent nine months without treatment, unable to talk, stand, feed, toilet, or bathe myself. I was in excruciating pain, nauseous, dizzy, and couldn’t tolerate any sound, movement, touch, or light. I had migraines around the clock. I had psychological symptoms I’d never had before, altering my personality, and causing me to lose most of my friends.

During this time, not knowing what else to think, I eventually began to believe the doctors. They said this wasn’t Lyme, therefore it must not be Lyme. I didn’t know what it was. I just was holding on for dear life.

I had one friend who had gotten Lyme around the same time as I had. Luckily, her test results had been positive, though she did not remember a tick bite. She was absolutely convinced that my symptoms were caused by Lyme and coinfections. She sent me printouts of Internet Lyme forum posts from other people who’d lost their voices, who couldn’t stand or walk or had tremors, and on and on. She begged me to get retested.

“Positive”

Physically and emotionally, it took everything I had to get retested. In October, 2008, I was again tested for antibodies to the spirochete that causes Lyme, as well as for three other tick-borne diseases. I couldn’t bear the thought of the results coming back stamped, “Negative, negative, negative.” It would be the end of hope. But, I needed someone who was in a position to help me heal to finally know the truth, and this seemed the only way. I had to risk it.

I remember sitting in front of the fax machine, slumped over with exhaustion in my power wheelchair, as page after page came through from the lab.

  • “Western Blot, Borrelia burgdorferi” (the microbe that causes Lyme), “Positive.”
  • “Lyme disease — Confirmed by Southern Dot Blot, Positive.”
  • “Babesia microti” (another tick-borne disease), FISH (a test that shows the presence of the parasites’ RNA in my blood), “Positive.”

As the positive results came through, I cried and cried. Finally, answers. Finally, “evidence” that I wasn’t “crazy.” Over a year-and-a-half after infection, the combination of antibiotics goosing my immune system into producing enough antibodies, and the time that allowed the organism to multiply in my blood and tissues had led to proof: positive blood tests for Lyme and babesia.

Based on these results, my doctor started treating me again. She said she was “thrilled that now she could finally help me.” I can only assume that she had been afraid to risk it before, to risk her practice, because of the politics.

With these two diagnoses came a third — Bartonella. I had almost all of the symptoms, and it is even harder to get an accurate test for this infection than for Lyme. In light of the proof of existing tick-borne disease, my doctor now made a clinical (symptom-based) diagnosis of this third infection. Bartonella seemed particularly likely to be at the root of the psychological symptoms that had cost me my sense of self and most of my support system.

Thus began a grueling treatment regimen, with herx reactions so strong that they usually lasted for several months. Now I am slowly — very slowly — getting better. I’m still not back to how my life was. But I can do more, I suffer less physically, and my personality has been returned to me. I have hope.

“Dubious?” How about “Definitions”?

The IDSA says there is no evidence for chronic Lyme infection that persists after their recommended treatment of 28 days of antibiotics.

My body — my story — provides the evidence that the IDSA is wrong.

Let’s break it down, definition by definition:

  • Evidence: It should be enough for any practitioner to have seen me to know that I was physically ill (and, indeed, that’s what they saw and various blood tests and exams showed), but since clinical common sense was not enough, let’s look at the evidence that takes the human factor out of the equation. We have my EM, at the site of a tick bite. That’s evidence that the CDC and IDSA don’t even dispute. We have the multiple blood-test results that show that one-and-a-half years after infection, the microbes and antibodies were still in my blood. Evidence? Check.
  • Chronic: Chronic disease refers to a persistent and lasting medical condition. In some cases, I’ve seen cut-offs of months or years used to define chronic. Six months is sometimes used, or a year. I had positive test results of infection twenty months after exposure. Three-and-a-half years later, I’m still sick. Chronic? Check.
  • Infection: Here’s a good definition of infection. “The pathological state resulting from the invasion of the body by pathogenic microorganisms.” Borrelia burgdorferi, “the Lyme bug,” is a bacterium in the spirochete family, similar to the microorganism that causes syphilis. Babesia microti is a parasite that causes babesiosis, similar to the parasite that causes malaria. Infection? Check.
  • Persistence of illness after IDSA’s protocol has been performed: I was on amoxicillin from July 2007 through October 2007 and cefuroxime from October 2007 through February 2008. That’s a lot more than 28 days. Yet, as is clear from the evidence of chronic infection above, I was still sick. Persistence? Check.

So much for my easily curable, noncontroversial illness. That’s the IDSA Lyme disease, not my Lyme disease.

I sure wish the gap between the two wasn’t so wide. I sure wish my illness had been quickly and easily curable.

If the IDSA’s picture of Lyme matched the reality of it, that tick bite would have faded, along with my rash, to a distant memory.

If that had been the case, not only wouldn’t I have had to suffer the physical damages of this illness, I wouldn’t have to write a blog to counteract misinformation claiming that my experience doesn’t count, and that my disease doesn’t exist.

Thank you for reading.

-Sharon, the muse of Gadget (who also had Lyme, and who also required treatment much longer than he was “supposed to” have), the spirit of Jersey (who seems to have escaped the plague), and Barnum, who gets tick-checked every night from March through November and has had over 60 deer ticks found on him in his first year alone in rural Massachusetts

P.S. Please support this effort. Comments are very welcome. I also encourage you to visit the following other bloggers who say “My Lyme Disease Is Not the IDSA Lyme Disease.”

I believe Ashley spearheaded this effort; she is a fierce and eloquent advocate for Lymies. Some of the other bloggers also have MCS, like me. Candice is one with severe MCS and food allergies, and a moving story. Heather’s tale is one of the most compelling I’ve ever read, on any topic; please read it.

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)

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)

Back Back Back: A Year Ago Today

Back, back, back
In the back of your mind …

When you sit right down in the middle of yourself
You’re gonna wanna have a comfortable chair

-Ani DiFranco

Backdrop

I’ve been feeling depressed lately. I thought it was mostly health stuff. Ten days ago, my doctor told me that my complete blood counts (CBCs) were showing abnormalities, and that I had to stop all treatment for Lyme disease and coinfections — eight medications in all, including intravenous and intramuscular antibiotics — because medication toxicity was the likely culprit. If my blood work was normal for a month, we could discuss how and which treatments to resume. If it didn’t, I’d need to see a hematologist. She added that if my medications were not the problem, the cause might relate to “bone marrow,” such as “leukemia.” Terrific.

I had the leukemia flag waved at me a few years ago by a doctor trying to convince me to go to the ER, which I’d been refusing to do. His scare tactic worked. I went, and it turned out to be a lab error, as I’d expected. In this case, we have several weeks of abnormal tests to prove it’s not lab error, and I really like my current doctor, but I think casual cancer references should be illegal.

Background

A few days ago I received copies of the blood work my doctor’s concerned about. Some of the things that were wrong, such as abnormal lymphocyte counts, reminded me of reading Gadget’s CBCs. In fact, the reason I can decipher a CBC is that after Gadget started chemo, I studied his every week. I researched what each abbreviation stood for and what it could mean for his health. I bought veterinary manuals. I learned all I could about canine lymphoma and its treatments. He ate a homemade cancer diet and received Western and Chinese herbs, supplements, acupuncture, and chiropractic. The average life expectancy of a dog on Gadget’s chemotherapy protocol (Madison Wisconsin or CHOPP) is a little over a year. Gadget lived half that.

When Gadget was diagnosed, I also had a feeling of foreboding — about myself. Even as I was sure I could beat the odds for him, I had a bad feeling about what it would mean one day for me. Gadget and I were as close as I thought it was possible to be (until we got even closer, during the months he was sick), and we shared many of the same health problems: food sensitivities, bad reactions to drugs and chemicals, neurological issues, thyroid problems. I had raised him as healthfully as I thought possible. Like me, he was exposed to no pesticides, no cleaning chemicals, no preservatives or additives in his food. We lived in the country, and he drank clean water and breathed clean air. With his lifelong health problems, I’d always known that the longevity deck was stacked against him, due either to genetics or his early life. I suspect he came from a puppy mill. Still, I had never thought it would be cancer that would take him from me. My friends and family were similarly shocked: “Cancer? No, it can’t be cancer. Not Gadget. Not with the way you care for him….”

When I accepted that it was cancer, I thought, “I’m next.” A lot of people with MCS get cancer. I don’t know how often it’s directly related. In some cases, it’s clear that the chemical injury that caused the MCS also led to cancer. In others, it isn’t. Cancer is so common in the general population, it might just be coincidence for most. Regardless, with all my own illnesses and my history of chemical injury, and the fact that I got sicker instead of better despite all my efforts, when Gadget’s diagnosis was confirmed, it was hard for me to shake the feeling that it meant something for my health too. After all, we were two parts of the same body/soul, with so many of the same obstacles thrown in our paths. Some part of me settled into a silent conviction that it was my job to care for him until it happened to me, too.

Then, all the work of battling cancer distracted me from myself. Focusing all my energy on Gadget’s physical health and his happiness kept me too busy for the next six months to allow those thoughts again. When he died, they resurfaced, but I pushed them away. Until now.

Backslide

As I wait out this month for my test results, my symptoms charging back as treatment is withheld, I’ve become depressed. At first, I wasn’t sure why. There are a lot of potential reasons: Feeling sick feels bad, in itself. Not knowing why I’m doing worse — is it the tick-borne diseases letting loose, or is it something else? — is scary. If it is Lyme & co., will I be able to return to treatment, or will I spiral back down to where I was two years ago, back to a life of severe loss of function and intractable pain that felt marginally bearable largely because of Gadget? Could it be that mood/behavior changes, which can include feelings of hopelessness, had returned along with my other neurological symptoms? In this case, how could I know which of my feelings were “real” and which were the bugs eating my brain?

Backtalk

You might think that Barnum would cheer me up, but I’ve actually found raising him in the shadow of my grief to be confusing. Sometimes, I feel joyful, triumphant, and proud that despite my inexperience with puppies, his challenging mixture of personality traits (to be enumerated in future posts), and my significant — and currently, extraordinarily unpredictable — limitations, we are managing to make a go of it. Other times, I am so angry with myself and wracked with guilt by mistakes I’ve made or frustrated by his puppyhood — the concepts he doesn’t understand, the final steps of housebreaking, the exuberance that just isn’t fun when it involves bodily harm or the barking zoomies at 3:00 A.M. — that I question whether getting a puppy was the right decision. I argue with myself:

Me 1: “Gadget wasn’t like this.”

Me 2: “But Gadget wasn’t a puppy when you got him.”

Me 1: “But I never questioned that Gadget would be a great service dog. We struggled with a lot of things, but I had total faith that we’d be a team.”

Me 2: “But that was partly ignorance! You didn’t know all the things that could go wrong. Now you know so much more about the many reasons a dog can wash out, and how a dog has to want to work. Back then, you just took for granted that a dog that had more gusto than Jersey would love to work. Plus, you have more disabilities now, which makes it harder to raise and train Barnum and ups the ante of the number of tasks you’ll want him to learn.”

Me 1: “Ugh.”

Backcountry

I’ve just finished listening to a book called Merle’s Door: Lessons from a Freethinking Dog, which is a deeply moving book about an intensely close relationship between a rescued stray and the author, Ted Kerasote. Although Merle was not an assistance dog, he and Kerasote had a working partnership, as well as a deep and intimate love. Kerasote is a subsistence hunter in rural Wyoming, and Merle helped him locate elk and other game. All of Kerasote’s meat was what he procured from the wild, so they weren’t just sharing a game; they lived off this teamwork. The subject matter, alone, was bound to make me continuously reflect on my relationship with my dogs, especially Barnum and Gadget. Kerasote — who gave Merle freedoms impossible for most dog owners — challenges a lot of traditional, as well as current, thinking on dog care and training. Combined with my struggles and deep feelings of inadequacy as a puppy raiser, this focus kept me comparing myself and my canine relationships with that of Merle’s idyllic life with Kerasote.

Finally, of course, any book about the life of a dog must end with the death of that dog. Merle died of cancer, and the journey of illness and death that Kerasote traveled with Merle was very similar to what Gadget and I experienced. I finished the book yesterday. For the past two days, leading up to Merle’s death, I cried over and over. When I otherwise had no energy to move, I’d lay still except for the sobs jerking my body. I frequently envied Kerasote’s abilities and resources, physical and social, to care for Merle and provide a death and funeral for him that I was not able to provide for Gadget.

Backtrack

I thought these were all the reasons I’ve been thinking about Gadget more than usual while simultaneously feeling his presence in my memory murky and hard to grasp — as if Barnum and Merle somehow were obscuring who Gadget really was, what our relationship was, why I felt this pain under my breastbone that I could not name. Until today, I hadn’t known what to do with it but obsess darkly, eat chocolate, and cry.

Then, Carol, my PCA said, “Today is May 8, isn’t it?”

I rarely know the date; even the month can be a stretch. I checked my calendar and nodded, yes, the eighth.

Carol said, “It was exactly a year ago that I took Gadget to the hospital, wasn’t it? May eighth? ”

That stopped my heart. It was.

Back, Back, Back

I was very sick that day, like today, like yesterday. I couldn’t speak or get out of bed, and I was in a lot of pain. Gadget’s eye had looked pink the night before, and I had flip-flopped over monitoring it at home, taking him to the ER, or taking him to a regular vet. On the morning of Friday, May 8, 2009, I sent Gadget to VESH (Veterinary Emergency and Specialty Hospital) with Carol. Part of what decided me was that VESH had an ophthalmologist on staff. Even though she was not scheduled that day, I was assured she could be consulted if necessary. I had a history with SD eye crises: Jersey had glaucoma, a common problem among Bouviers, and even though I had taken her to several vets from the time I adopted her (long before it was an emergency), it had been misdiagnosed repeatedly. By the time it was diagnosed, the affected eye was permanently blind and terribly painful and had to be removed.

Jersey in profile

Jersey's blind side -- the missing eye hid by her fall (bangs)

Afraid Gadget might relive this trauma, and frustrated by my helplessness at not being able to accompany him, I spoke at length to the receptionist at VESH via HCO relay, stressing the importance of getting Gadget’s intraocular pressure checked on both eyes and compared to each other. I told her that glaucoma was a breed problem in Bouviers, that a reading within the “normal” range should be suspect if it is still much higher than the other eye, and I asked the examining vet to call me by relay during or immediately after the exam. She assured me that they were very familiar with assessing and diagnosing glaucoma. This eased my mind slightly.

If only it had been glaucoma.

Backhand

I waited. It felt like forever until the phone rang. It was Dr. C. She was the doctor who had treated Jersey when she was dying of multiple-organ failure from unknown causes in 2006. Jersey was thirteen then, retired, and whatever killed her, either an extremely fast-moving infection or cancer, at least she’d lived a long life and didn’t suffer a protracted illness. Nonetheless, I hated hearing Dr. C’s voice. I hated her, irrationally because I associated her with Jersey’s death.

Within a few minutes, I despised her.

“Sharon, it’s good you brought Gadget in,” she said. She sounded cheery, and I thought her next words would be, “It is glaucoma, but we caught it in time.” Or that it was another eye problem that could be treated since we’d moved fast.

Instead, she followed up with, “Gadget has lymphoma.”

I was shocked. I couldn’t believe it. There must be a mistake.

I started crying, but she couldn’t hear me because we were on relay. Dozens of questions leapt to mind, but I couldn’t interrupt her, because we were on relay.

She continued, “If your dog has to have cancer, lymphoma is the best cancer to have.” She explained that, depending on treatment, he could have another two to thirteen months to live.

This was the “good” news? He had the “best” cancer? I wanted to reach through the phone and hit her.

Backtrack

Over time, however, I learned the truth of what she said. Most canine cancers strike quickly and leave no options for treatment or cure. Lymphoma is one of few that usually responds well to chemotherapy. Gadget had five good months on chemotherapy. We reveled in swims and hikes at the pond, romps with other dogs, walks down new paths, even some new skills — just to add interest and a sense of accomplishment to his life.

Clear skies, clear water, Gadget returns to me.

When another cancer struck — mast cell tumors — Gadget’s decline was swift and heartbreaking. He died November 19, 2009.

I feel robbed; a year ago, I expected to have Gadget here with me today. If Gadget had represented the mean, one year post-diagnosis we’d have one more month with him in remission. That was the average for the MW protocol at VESH: thirteen months. But, for there to be an average, half the dogs must live longer, and half the dogs must live shorter. Of course, Gadget could not sit in the middle of the bell curve, because Gadget was never average.

My sweet boy, I miss you. I want you back.

As always, we welcome your comments.

-Sharon and the muse of Gadget (with Barnum, puppy-in-training)

P.S. Right before I was about to publish this post I got a note from Rochelle Lesser of The Land of PureGold Foundation . This is a wonderful organization. They educate about so many crucial issues — working dogs, humane training, canine cancer, nontoxic pet care, and more. They also gave Gadget a grant to cover some of his cancer treatment, for which I was very grateful.

Currently, they are running a contest to raise awareness about the importance of nontoxic, real food for dogs in preventing cancer and other health problems, and I was astonished to learn that so few have entered! I am only one of two so far! Rochelle even did a touching quickpress about Gadget and the last birthday cake I made for him.

The first ten people who enter the Bone Appetit Recipe Contest receive a bag of free, nutritious dog treats! (And the grand prize is phenomenal.) They gave me strength in championing Gadget’s fight to survive. Please lend your support to this very important (and fun!) contest.


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