Kelly’s Unorthodox Battle with Lyme Disease

By Ellie Goldstein

Kelley two months before his diagnosis.

On July 30, 2000, I was not sure Kelly would live to see sunrise the next morning. That same Sunday night my veterinarian and friend Julia Carter put an IV catheter in Kelly’s front leg and began a drip of the antibiotic Rocephin®, undoubtedly saving his life.

Kelly is a 101-pound AKC Greyhound who lives in Connecticut, the same state where the town of Lyme is located and where Lyme disease and the deer ticks carrying the disease are legend. It is perhaps a lesser talked about tick borne disease because during their careers, racing Greyhounds, don’t seem to be exposed to the Ixodes tick, the variety tick causing the illness. Whether Kelly acquired the disease via Lyme vaccinations or via tick bites, we will never know.

The story began early in the month.

Kelly “told me” he just wasn’t feeling well. His symptoms were not well-defined – lethargy, eyes that looked unhappy, and a real reluctance to get up and go, but his appetite was good enough and he had no fever.

I talked with Julia about trying him on doxycycline. He had a number of ticks on him in the spring before I had applied Frontline®. This area is a hotbed for Lyme disease, and I didn’t want to chance his becoming sicker than he was while we tried to determine what was going on. It seemed safer to administer doxycycline while we were doing diagnostics than to do nothing until we had a definitive answer.

Unfortunately, the doxycycline did nothing to alter how he felt. But once he was started on it, he was required to take it for 10 days. (Stopping it too early could risk his developing a resistance to using doxyxycline in the future.) Blood and urine tests and a thyroid panel run during those 10 days showed nothing but slightly elevated cholesterol and lipemic blood levels. Albumin in his urine was at a slightly higher level than it should have been, so I did daily urine tests for four days. The tests showed that there was nothing to indicate a kidney problem.

After the required 10-day course of doxycycline, I stopped the medication. That’s when Kelly started his major downhill slide. I sent blood to the ProtaTek laboratory on July 24. Julia asked that I humor her by doing a Lyme titer test, despite the fact that doxycycline had no effect on him at all.

A Big Surprise: A Positive Lyme Titer

The results were welcome – almost – and surprising. Kelly had a Lyme titer of 1:5,120, not truly catastrophic as Lyme titers go. Lyme titers tend to be much higher than titers of several other tickborne diseases, but the results were the first indication of a problem with a name associated with it. Now the question was why he wasn’t responding to doxycycline.

Once again, he was put on doxycycline. In preparation for a long course of the drug, I had Carafate® on hand if he experienced intestinal distress. Just a few evenings after I’d restarted the doxycycline, Kelly lay on the bed next to me while I read. His demeanor told me he appeared to have no sight in his left eye.

The most frightening thing in the world was to put a patch over the “good” eye and see this bold, confident even brash dog walk into the corner of a table. Kelly was indeed sightless in his left eye.

I took him immediately to the nearby emergency veterinarian service, where his blindness was confirmed. The veterinarian on duty was reluctant to do more than assure me there didn’t seem to be any pressure on the eye – no glaucoma – despite the fact that it was slightly more prominent than his right eye.

The next morning Julia was able to secure an emergency appointment for Kelly with a veterinary ophthalmologist. An exam determined he had a slight case of common Lyme uveitis. This meant that Kelly’s eyeball itself was in good condition, but something was going on with the optic nerve that was causing the blindness. The doctor recommended a CT scan. On Friday, July 28, Julia made an appointment for Kelly at Cheshire Veterinary Hospital for a CT scan to be done on Wednesday, August 2, the hospital’s first opening.

The very next morning, Saturday, July 29, Kelly crashed. All the symptoms I was seeing and some new ones became very apparent: extreme lethargy, inappetence, third eyelid very obvious in both eyes, blind in the one eye, but drinking and still with no fever. I panicked at this point, knowing Julia was away for the weekend and doxycycline was not helping.

Angels to the Rescue

Physician’s Assistant and Greyhound owner Jordan Graustark came to our rescue. Using her knowledge of human medications and her many medical resources she did some research and suggested trying IV (intravenous) Rocephin, a third generation cephalosporin which deals with Lyme disease in humans that doesn’t respond to the usual medications. We guessed that for some reason, the Lyme disease, which wasn’t manifesting itself in Kelly’s body, had crossed the blood-brain barrier and was affecting his optic nerve.

I printed out pages and pages of information from the Internet about the use of Rocephin to combat Lyme, most of it in reference to people, but found one clinical trial where it was used on laboratory monkeys. I called Julia at home and left a message on her answering machine that I was delivering a package of material about Rocephin and would leave it in her mailbox so she’d have it whenever she arrived home. I spent Saturday and all of Sunday fretting and watching my boy go downhill.

The evening of Sunday, July 30 Julia called and, without even saying hello, asked if I wanted to start Rocephin that night. My response was that if we didn’t, Kelly might not make it through the night.

The search for Rocephin began. Most pharmacies on Sunday were closed, and those that weren’t couldn’t help. I even appealed to my own doctor to see if he might know of a source. Interestingly, hospitals where it was available wouldn’t give a layperson like me the time of day. But Dr. Carter found a source, Bridgeport Hospital, where she was able to “borrow” a 10-day supply of Rocephin. The hospital wanted no cash, but she would have to replace what she took. We didn’t know what the cost would be and didn’t care. Julia called to say she had the antibiotic and was headed to her hospital. She called from her office at the Shakespeare Animal Hospital in Stratford, Conn. to see if the hospital or her home would be more convenient for me. Since I was managing to ruin her weekend with my sick dog, I suggested it might be nicer for us to come to her home. Another hour elapsed by the time she called Tufts to get the required dosage information and I gathered Kelly and a good friend, Robin, who accompanied me for moral support.

When Robin and I walked into the Carter home with Kelly, she was surprised at how much worse Kelly looked since she last saw him two days ago. Poor Able, Julia’s Greyhound, was banished to another room and Kelly took up residence on Able’s dog bed.

Under the best of circumstances Kelly is a dog who abhors being handled by anyone. That evening, he never uttered a sound as Julia put the catheter in his front leg vein and started the intravenous drip. He was too down and out to protest.

Nonchalant Kelley undergoing his IV Rochephin treatment

As the antibiotic flowed in, Julia explained how to mix the powdered Rocephin with saline, clear the IV lines of air bubbles, and how to drip the solution – all very simple coming from a veterinarian who does it all the time, but terrifying to me trying to keep everything sorted out. The next morning when I learned the cost of the drugs, my fear heightened. This was one medication with which one couldn’t make even a marginal error. It was wildly expensive!

Kelly lay still throughout the 20 minutes it took to drip one gram of Rocephin mixed with a liter of saline. At one point, Kelly stared very deliberately at Julia’s husband, Jeff. It was obvious to us that Kelly was calling to Jeff, who placed his healing hands on Kelly’s body, and gently massaged him until a low growl told Jeff that Kelly had received what he wanted. Jeff backed away. Kelly was noticeably relaxed from Jeff’s ministrations.

Armed with bags of saline, bottles of Rocephin, intravenous lines and directions that had my head spinning, Robin, Kelly and I left Julia’s home. To confirm how ill Kelly was, one of the family cats met us at the front door and sauntered between Kelly’s legs. We held our breath, but a very uncat-safe Kelly did no more than glance down at the cat. A scary moment.

We were still three days from a CT scan, but I was having second thoughts about it. We had a positive titer for Lyme. We felt fairly certain we were dealing with late stage Lyme that had settled in his brain. And what really would the scan reveal? If it was a brain tumor, I had no intentions of pursuing surgery and it would more than likely be contained for a while by a steroid. Kelly had no other neurological symptoms to suggest we were even dealing with a tumor, and, given his youthful age of 5, a tumor was not a likelihood. After much thought, I decided to go with the Rocephin rather than the CT scan, so I cancelled the appointment.

Kelly’s Life Lines

For the next two weeks Kelly received a gram of Rocephin mixed with saline every morning and night. Along with this, he was still on a high dose of doxycycline and a decreasing dose of prednisone to combat possible inflammation in his brain.

Running an intravenous drip was nerve wracking for me at the beginning. All the “what ifs” in the world surfaced. What if I didn’t get out all the air bubbles? We’re talking veins here. I could kill my dog. What if I ran the drip too fast? Would he vomit as I was told he might? What if blood clotted the port in his leg? Could I get it opened to do the drip? I learned to clear the passageway with either a bit of saline or heparin solution injected into the port.

It was not an easy time for me. How I managed not to convey my fears to Kelly I’ll never know. Maybe he did feel my nervousness and was obliging me, because for all that this dog hated to be confined in any way, he would lie on the couch or my bed for close to an hour at a time while I slowly let the Rocephin drip into him. He was the ideal patient and would many times flip himself upside down in the course of the procedure and fall asleep with the IV line draped over his body.

On Tuesday morning, August 1, Kelly made me aware of a miracle. He had sight in his left eye again! Everyone in the neighborhood must have heard my shouts of joy. I hugged Kelly, totally mindless of how much he disliked the squeezes. I called on my neighbor, an eye doctor, to check out what I believed to be true. Sure enough, Jim Santanelli found Kelly had the fear response in that eye that he hadn’t had 48 hours earlier. Poor Kelly, all that day and into the next I kept pushing my hand toward his eye to see if he’d blink. Kelly obliged me by blinking each time.

We reassessed Kelly’s medications shortly thereafter. Julia said I could eliminate the doxycycline since the Rocephin would be doing the job of destroying any Lyme spirochetes in his body as well as in his brain. He had been eating with some hesitation, but his appetite picked up immediately once I stopped giving him the daily dose of 1,000 mg of Doxycycline. (This may seem a huge dose but it is correct for his weight.)

Along with the twice-daily drip, came the port changes. Every third day I took Kelly either to Julia or to Mt. Carmel Veterinary Hospital in Hamden, Conn., where Dr. William Farrell kindly changed the catheter from one front leg vein to the same large vein in the other leg, all the while listening to Kelly’s deep rumbling of protest. But rumbles and grumbles were all he uttered. He never showed teeth and was delighted when Jan Hugo, my friend as well as a veterinary technician at the hospital, treated him with biscuits afterwards. I minimized Kelly’s dislike of the routine by removing the old port at home, using a dissolving product designed to make removing sticky bandages easier. Still, my dog was beginning to look like a junkie with track marks from the needles running up and down his front legs.

Toward the end of the two weeks, my fears escalated again. Kelly felt better, but I had to ask myself if it was a good idea to stop the antibiotics after such a short a time. Thirteen hundred dollars for two week’s worth of Rocephin was a killer, but so was this disease. Again, a guardian angel took over. Dr. Suzanne Stack of Yuma, Arizona located another two weeks worth of Rocephin in her area at a much lower price and asked if I wanted to continue the drug. Yes, we did. So, Dr. Stack overnighted the antibiotic to me here in Connecticut. At this point, cost wasn’t a consideration but the better price was a relief to an already high medical bill. Plus, Kelly was showing obvious signs of improvement for the first time in two months and to stop too early could be foolish and dangerous.

I continued dripping Rocephin for almost another two weeks. When I had a day-and-a-half worth of drugs left to use, Kelly’s veins literally shutdown. The walls had thickened from the insult of the antibiotics and the ports to the point where getting any Rocephin to drip meant changing the port daily. We were running out of vein space in front and using a hind leg vein on a mobile dog didn’t seem to be the way to go. So I stopped dripping the Rocephin after three weeks, five and one-half days.

Our plan was not to stop cold but to switch to an oral cephalosporin, second-generation Ceftin®, which was only slightly less expensive than the Rocephin. I kept him on the Ceftin for another few weeks.

Light at the Tunnel’s End

All the while, Kelly continued to improve, but his energy level remained low. He tired so easily. Back to the drawing board with Julia to set up a program for rebuilding his body after the scourge of disease and drugs. During the antibiotic use, I gave him a B-50 complex pill daily to combat what the antibiotic was depleting from his body. Once off the medications, I started a regimen of B-12 pills to perk him up, DMG, and Coenzyme Q10 to help boost his immune system. I followed that up with a daily dose of multi-vitamins and minerals

It’s now one year since the traumatic onset of this disease and Kelly is doing well. His Lyme titer is down to 1:640 and having been titered twice more since July 2000, it seems to want to stay there. More than likely, it’s a response to the Lyme vaccine (he was vaccinated yearly through his second year) and will probably remain at that dilution. His energy level is increasing and the first day I saw him exert himself to run in December was a banner day for me.

The one negative twist to this story is that I can’t totally wean him from prednisone. He seems to depend on the 5 mg I give him every other day. As Julia Carter says, this is almost a negligible dose, but it seems to be what he needs. There may well be some residual brain inflammation or harm done by the disease that responds to this minute dose. We monitor his blood to be sure there’s nothing else is going on and all values are well within the normal range. At some point, he will take 5 mg every third day and perhaps eventually be weaned him from his dependency. In the meantime, he’ll take it at the current level.

Just recently I posed some questions to Kelly’s breeder, Kat Whitaker, an FDA scientist. Why didn’t Kelly have the usual symptoms that indicate early and classic Lyme? Why did he go directly to late stage Lyme that crossed the blood-brain barrier? Did the Lyme vaccine he’d had as a pup influence this strange happening? Kat suggested the following to think about: “What if the vaccine had caused a subclinical Lyme infection? His body could fight off things for a while but many of these pathogens can change/mutate. It’s the same problem we’re seeing with antibiotic resistant bacteria. A subclinical infection can be missed and later mutate into something that is very virulent.”

If this is the case, perhaps it explains his less than lovely disposition. He may well have been feeling sick for a very long time – even years. It’s amazing how personable he is now, how much happier and playful. I certainly like this personality much better than the one I used to see too often —– a dog short-tempered with the other dogs in the house and one who didn’t want to be petted or fussed over by most people. Today, at 6, Kelly’s a different dog. He is more like the wonderful happy pup he was until he was a year old. Is he beyond this whole disease? I don’t know. It’s now believed that dogs, like people, can have chronic Lyme disease. At least with the knowledge I’ve gained, I can restart him on an antibiotic that will be effective without wasting precious time as we did the first time around. He and I can deal with that.

GLOSSARY

Albumin: water-soluble proteins found in plant & animal liquids & tissues

Blood-brain barrier: a protective network of blood vessels and cells that filter blood flowing to the brain

Carafate: (Sulcrafate) an anti-ulcer medication prescribed for stomach irritation

Ceftin: (Cefuroxine) an antibiotic, a 2nd generation cephalosporin

Cephalosporins: an antibiotic group classified as 1st, 2nd, 3rd generation

CT Scan: Computerized Tomography. Pictures of structures within the body created by a computer that takes data from multiple x-rays and turns them into pictures on a screen

DMG – Dimethylglycine. An amino acid found naturally in the body of people and animals. It has antioxidant and immune system benefits.

Doxycycline: one of the tetracycline antibiotics, effective against some of the tick borne diseases

Heparin: an anti-coagulant

Ixodes family:

Ixodes dammini. Most common in the northeast and midwest

Ixodes scapularis. Found in south and southeast

Ixodes pacificus. Found on the west coast

Lipemic: fatty

Pathogens: the agent of disease

Prednisone: a corticisteroid

ProtaTek: ProtaTek Reference Lab, a laboratory in Arizona known for titering for tick borne diseases

Rocephin: (Ceftriaxone), a 3rd generation injectable cephalosporin used to treat late stage Lyme

Spirochete: a microscopic bacterial organism with a worm-like, spiral-shaped form. The cause of Lyme disease

Titer: a measure in chemistry determined by comparing against a standard.

Uveitis: Inflammation of the uvea of the eye. Common to Lyme disease sufferers. The uvea includes the iris, the vascular layer between the white and the retina and the tissue that connects iris and that vascular layer.

ORIGINAL

Discussion

One thought on “Kelly’s Unorthodox Battle with Lyme Disease

  1. On July 22, 1995 I let Kelly go after a long 5 year battle with chronic neurological Lyme. Residual head & neck pain made it impossible for me to ever wean him from the steroid. Those five years of pred took their toll & severely compromised his immune system. Interestingly it wasn’t the Lyme that ended his life but osteo, something relatively rare in an AKC greyhound. I firmly believe his faulty immune system was a factor in the development of the bone lesion.

    Posted by Ellie | April 3, 2010, 5:43 PM
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