Sunday, March 16, 2008

IN DEFENSE OF LIFE: LUKE’S STORY, A chronicle of illness and treatments

The following is a modified copy of the document sent to several parties regarding our dog’s struggle with GME.


Early last July my husband and I noticed that our six-year-old- mixed-breed dog, Luke, was getting a little “wobbly.” On July 10, 2007 my husband took him to our usual veterinarian and tried to explain what “wobbly” meant. She gave him a routine exam and couldn’t see anything wrong with him, but gave him Rimadyl in case he was sore from an injury. Two evenings later Luke and his sister Leia were playing frisbee and tennis ball in the backyard when Luke suddenly went down on his left shoulder and paddled around on the ground in complete oblivion for approximately one to two minutes. He then jumped up as if nothing had happened, but we knew something was terribly wrong. We brought him to see the DVM the very next morning, July 13, 2007, and she again looked him over, but didn’t see anything wrong. After insisting that we knew what we saw, she shined the light in his eyes again and noticed that he had anisocoria in the left eye. She immediately called the UW Veterinary Medical Teaching Hospital to notify them that Luke needed an MRI.

We then proceeded to the UW Veterinary Medical Teaching Hospital. The MRI machine was in need of repair so that would have to be scheduled for the next week. They did do a neurological work-up that included CBC and chemistry panel to help rule out any infectious or metabolic problems, and thoracic radiographs and abdominal ultrasound to check for any tumors or masses that could have spread from the brain or to the brain.
The results of those tests are as follows:

CBC **Monocytes 1,394/uL (150-1,350)
PCV 50 (37-55)
TP 7.3 (6-7.5)
Platelets 297,000uL with clumping (175,000-500,000)
Segmented neutrophils 8,366/uL (300-11,500)
-Remaining values were within normal limits

Chemistry Panel ** Alkaline phosphatase 419U/L (13-289)
BUN 13mg/dL (8-30)
Creatinine 0.9mg/dL (0.5-2)
ALT 54U/L (14-151)
Glucose 108mg/dL (74-145)
Albumin 3.7g/dL (2.6-4)
-All of the rest of the values were within normal limits

Thoracic radiographs Roentgen signs:
1. VHS is 11V. Mild left ventricular and left atrial enlargement
2. Normal pulmonary vasculature
3. Hepatic shadow is passing the costal arch although the gastric axis is normal.
4. No evidence of pulmonary nodules

Diagnostic interpretation
1. No evidence of metastatic disease, suspect mild hepatomegaly vs normal variant

Abdominal ultrasound Liver – isoechoic to spleen
L adrenal – 0.99cm/0.79cm
R adrenal – normal
All other findings within normal limits

Interpretation:
Left adrenomegaly DDX adenoma, PDH, other neoplasia
Hyperechoic liver DDX metabolic (steroid hepatitis), infiltrative, inflammatory


Neurologic consultation

Neuroanatomic examination:
Mentation – BAR
Cranial nerves – miosis and ptosis OS
Gait – normal
Conscious proprioception – normal
Spinal reflexes – normal
Palpation – intermittently reacts on lumbar palpation
Neurologic consultation (continued)
Neuroanatomic diagnosis:
Horner’s syndrome OS, seizures – cerebral cortex

Differentials:
Neoplasia, infection, inflammation – not likely idiopathic due to age and Horner’s syndrome

Recommendations: MRI +/- CSF tap

Urine specific gravity 1,009

Physical exam noted that Luke was very nervous and tense. His vital signs were within normal limits; pulse was 108 bpm, respiratory rate was 42 bpm and his temperature was 102.1. The biggest abnormality noted was anisocoria with the right eye tending toward dilation (right eye considered normal – dilated in darkness). The rest was within normal limits.

The plan was for Luke to have an MRI early the next week to further evaluate the brain. Luke was placed on Phenobarbital to control any possible seizures and scheduled for an MRI the following Wednesday, July 18, 2007.

Okay, we’re all thinking “brain tumor.” These are very sad days. Coincidentally, I happened to be scheduled for my first “complimentary” colonoscopy the same Wednesday as Luke’s MRI and CSF tap.

We were also scheduled for “The Talk” that Monday with “The Neurosurgeon.” That talk did not happen as the doctor was called into emergency surgery. It would have been nice to be able to consult with someone other than students and a tech as our entire day/life was scheduled around it. We don’t really know what would have been said in that “talk,” but I wasn’t looking forward to hearing it anyway.

The results of the tests performed that Wednesday, 7/18/07, are as follows:

MRI: No significant abnormalities detected in the brain, ears or any other parts of the head.

Cerebrospinal fluid Analysis: Protein 38.3 mg/dL (normal <25) total="10"
Neospora caninum serology and Distemper PCR were later discovered to be negative.

Additional instructions and comments: “The MRI did not show any abnormalities with the brain or ears. The analysis of Luke’s cerebrospinal fluid indicates that inflammation is present in the central nervous system. The most likely cause of the inflammation is granulomatous meningoencephalitis (GME)…

GME is an inflammatory disease with no known direct cause. The main theory indicates an autoimmune attack on the central nervous system. Steroids may work to reduce the inflammation, but there is no cure. If the side effects from steroids are too severe, chemotherapy drugs may be used. Animals usually respond to the drugs for several months to years. Eventually the body overcomes the effects of the drugs, and the disease will progress.”

Luke was sent home on prednisone: Rx: 20 mg tablets: 1 ½ tablet by mouth every 12 hours for 3 days, then ¾ tablet by mouth every 12 hours for 1 month until recheck exam. Side effects can include weight gain, increased thirst, increased urination, increased rate of infection, panting, urinary retention and increased appetite. We were advised to schedule a follow-up appointment in one month and to provide a progress report. We were informed that the neurologist would ask for another spinal tap at that time. We were disinclined to have him go through that again – even if it didn’t cost another $1000. He’d suffered enough and what was to come of it?

I found myself crying about Luke’s fate night and day. I prayed a lot. This was just so wrong! Only yesterday we were a happy little family playing frisbee and tennis ball in the backyard. Now Luke’s sister runs and hides when we mention playing and Luke’s not himself anymore on prednisone. And all I can do is give him prednisone and cry until he dies a slow death in days, weeks, months, or years?

Fortunately we were referred to an “alternative medicine” veterinarian the following Sunday. We called the "AM vet" Monday and she made a house call the next evening, July 25, 2007. That was when we found out she used acupuncture and Traditional Chinese Medicine (TCM). That took us back a bit, but where we were with Luke, we’d try anything. She reassured us that she had been a traditional veterinarian for 14 years before taking the veterinary acupuncture certification, and now she only treats animals with acupuncture and TCM. She said that she thought that many diseases start in the intestinal tract with “leaky-bowel syndrome.” She gave us HOPE that Luke could get beyond this. She requested Luke’s entire file and proceeded to ask many questions about him. One question she asked was regarding his poop. We went out to the yard and looked around. I hadn’t thought about it until then and it came to mind that some of the dog poop that I had been clearing away was really ooey gooey and quite orange like pumpkin and had been for quite some time – several months at least. We do have the two dogs, Luke and Leia, (brother and sister) and Leia is completely healthy so there was a mixed message to start interpreting. She told us to monitor Luke’s poop and gave us dietary suggestions. She also said before she left that sometimes an acupuncture session could trigger a seizure, but it had never happened to her patients.

So at bedtime that night Luke was lying down when suddenly his heart started to race like he was running a marathon. We didn’t know what to do. We just sat and watched and wondered if he was going to die right in front of us. It was after 11PM so a telephone call was not going to help. His whole body was working so hard like an engine that’s going to overheat. That lasted over a half hour. Then he went outside, returned a while later and slept in the foyer. Leia was at his side through it all.

The next day we called "AM vet" and told her what happened. She said that it sounds like his system was trying to vent the heat from all the drugs that were in his system. Considering that in the course of two weeks he had been on Rimadyl, Butorphanol and Metatomadine (for thoracic radiographs and abdominal ultrasound), Atipamezole (antisedan), Phenobarbital, God-knows-what-all anesthesia for his MRI and spinal tap, and prednisone (60mg/day for 3 days, then 30mg/day after)! That’s a lot of drugs for a 66 lb dog.

Luke was having nearly all possible side effects from the prednisone. A voracious appetite was not to be denied day or night. On August 9th we contacted the meurologist regarding reducing his prednisone sooner. She was disappointed that we were refusing another spinal tap but did acquiesce on our prednisone reduction request now lowered to 20mg/day with further reduction after one month to 10mg/day.

Luke responded well to "AM vet"’s acupuncture treatments. His behavior and anisocoria improved. It was discovered that Luke had chronic diarrhea. She advised us to give them more real foods, no milk products, but turkey or beef, liverwurst, etc. and sardines. She also said to give both our dogs some DDS-Plus which is a pre- and probiotic dietary supplement. When we did that, both dogs got really bad diarrhea so we stopped. No one quite understood why that happened. "AM vet" also wanted them to get fecal exams even though they had been taking Heartgard and had the usual blood tests. She advised both Luke and Leia to take the 3-day Panacur treatment, just to be sure, and also prescribed Interceptor as a preferred heartworm medication for Luke.

By August 11th Luke’s diarrhea had improved. His eye looked better. He was, however, still feeling the side effects of the prednisone. August 17th Luke began the TCM, Tian Ma Gou Teng Yin. "AM vet" was confident this would work well for him and Luke became “cooler” forthwith. These pills were supposed to be ramped up, but when we went to 3 pills twice a day, he would get bad diarrhea. We had also started giving the dogs some vitamins, “Pet-Tabs” (Pfizer) around this time. We didn’t know whether the diarrhea was caused by the Chinese pills or the vitamins, so we stopped using them both for a few days and then started again with 2 Tian Ma Gou Teng Yin twice daily. I started a dietary record for the dogs on August 20th marking exactly what they ate and the fecal score of the day. On August 23rd "AM vet" advised not to decrease Luke’s prednisone (20mg/day) for another month. By this time we’ve seen "AM vet" four times in six weeks.

We’ve started a daily walking routine now because nobody’s playing in the backyard like they used to. (Luke was a gifted athlete and Leia played for the love of the game.) By August 31st Luke has his first good bowel movement. September 1st his nose is cool and the next day has a cool, wet nose, but that lasted for only one day. His bowel movements were also variable. It was difficult to know what foods he was reacting to or if it was the Chinese pills which we tried to ramp up again as instructed. So we’d stop those pills and start them over again. "AM vet" had been on vacation for a couple of weeks so it wasn’t easy to get answers to these questions. We saw her again on September 5 and she advised us to keep doing what we’re doing, increasing the Tian Ma Gou Teng Yin if it agreed with Luke’s stomach.

In the meantime I was so impressed with the positive effects of acupuncture on Luke, I began seeing acupuncturists through our HMO for stress, women’s hormonal stuff and a knee injury. It did affect me in a positive way but I knew I had a long way to go with it.

These were uncertain and trying times – much like walking on Jello. I needed all the help I could get so when the Dane County Humane Society sponsored a “Pet Psychic” just down the street, I thought I would check that out. I had never been to a pet psychic so I didn’t know what to expect – a lecture perhaps on insights into your dog’s head. It turned out to be a one-to-one meeting situation so I dashed home to get pictures of the dogs so she’d have something to work with. (I couldn’t bring the dogs in because Luke’s temperament on prednisone around other animals would be too much.) The psychic, Faye Pietrokowsky, M.S., from Portland, OR, told me that the dogs said thanks for the good food and really enjoyed the walks, but Luke asked for less of the “harsh” medicine and more of the other “stomach” medicine. I said, “he actually said that?” She said that she is not a veterinarian but that was what he told her. She also said that Luke wanted us to stop worrying because that made everything worse. She expressed that Leia won’t play in the backyard with Luke because she’s afraid he’ll have another seizure, besides the fact that he is not the same; he doesn’t smell the same or act the same. This woman hit it very close to the mark as I was just on my way out of the house to see her when "AM vet" returned my call re lowering Luke’s prednisone again. She agreed to a 5mg reduction (now 10mg AM, 5mg PM); that was September 21, 2007.

Things were coming along. We’re juggling the diet because we’ve always eaten “as a family.” They get what we get on top of their Iams adult dog food. Sometimes we slip up and they get cheeseburgers and fries or tacos like that, but usually they get good healthy people food plus Iams. Luke’s bowel movements were much improved from the chronic diarrhea he’d had before, but it’s still not consistent.

Luke had another acupuncture session with "AM vet" on October 3, 2007. She advised keeping him on the same prednisone level. A couple of days later I called "AM vet" to request another lowering of the prednisone because Luke’s poor heart was beating so fast when he’s supposed to be at rest that he seems like he’ll overheat. She agreed to lower it from ½ to 1/4 quarter 10mg pill at night (total=10 ¼ mg/day). I could see that while she’s treating animals only with acupuncture and TCM, that she too was “leaning” on the prednisone in this case.

Now Luke was starting to show signs of fatigue along with his racing-at-rest heart, and I’m really starting to get upset. By this time Luke was had developed prednisone-induced Cushing’s disease (iatrogenic Cushing’s) with increased appetite and drinking, pot-bellied appearance, weakness, panting, extended urination, the whole nine yards. By October 6, 2007 Luke was in a bad way. His breathing had started to become raspy, his breathing heavy, and his whole internal “engine” seemed to be stressed and liable to shut down. Here we were looking at Luke on another Saturday night and wondering whether he was going to make it through the night. Somewhere in between the Western Medicine and the Eastern Medicine, Luke’s diagnosis and treatment were failing him. I knew that if something didn’t change, Luke was going to die.

Since the moment Luke was first diagnosed with anisocoria by our veterinarian, I had been on the internet trying to find out everything I could about what causes what. An amazing amount of information is available on animal health on the internet. I wasn’t satisfied that Luke’s condition had been completely and accurately diagnosed. I researched every pertinent avenue that I could time and time again, beginning with Luke’s symptoms preceding his seizure, in retrospect, chronic diarrhea and anisocoria. I read about Horner’s Syndrome, seizure disorders, GME, Cushing’s Disease, prednisone, and food allergies.

I thought that just as Luke’s seizure was only a partial seizure, his Horner’s Syndrome diagnosis was clearly not a full-blown as he did not have a droopy upper eyelid (ptosis) or a prominent third eyelid. And this GME diagnosis wasn’t sitting right with me either. In order for it to be full blown GME these mononuclear cells have to form cuffs around the blood vessels of the brain and spinal cord (mostly in white matter). The cuffs join at adjacent vessels forming actual masses/nodules. No masses were detected in the MRI. The majority of cells in the CSF were lymphocytes (97%), 3% were mononuclear indicating the “granulomatous,” and there was a rare mitotic figure. It is certain that we are talking “the abyss” here, that I know, but I’m not letting Luke go without a fight.

In the course of this research I was taken aback at the amount of anecdotal information on dog food allergies. There are many horror stories of beloved pets dying when they were diagnosed too late and internal organs are already shutting down. I discovered that it’s not uncommon for dogs to develop allergies to foods they’ve been eating all along, especially grains, and that allergies can present themselves in the gastrointestinal tract.

Per www.thefooddoc.com/food/allergy.htm

Food sensitivity and food intolerance reactions occur to many foods and food additives but may be more difficult to diagnose. Food intolerance can result from poor digestion. For example, lactose intolerance results from lactase enzyme deficiency. Undigested lactose causes excess water being pulled into the small intestine resulting in diarrhea… Food proteins may trigger a delayed immune response resulting in intestinal injury. Gluten containing grains can trigger such an immune reaction. Sadly, if untreated, the most severe form of gluten sensitivity, known as celiac disease, can result in premature death, cancer and serious complications such as premature osteoporosis, infertility, and severe malnutrition. It is diagnosed by specific IgA antibody blood tests and a characteristic appearing intestinal biopsy.”

Per www.thefooddoc.com/wheat-allergy.htm:

“Food allergies develop when the body makes IgE antibody to a food it mistakes for a foreign invader. These IgE antibodies trigger an immediate reaction when the food is eaten. Allergy cells called eosinophils and mast cells are present in high numbers in the skin, lungs, eyes, nose and throat of allergic individuals. They release histamine in response to the IgE made for specific pollens, molds, dusts or foods. Hives, wheezing, watery itchy eyes, and nasal congestion typically result upon exposure to the allergen. In people with food allergies, allergy cells may be present in the gastrointestinal tract as well and cause nausea, vomiting, abdominal pain and diarrhea. The immune system also has a delayed response defense mechanism that does not involve IgE, eosinophils or mast cells. White blood cells known as lymphocytes, normally reside in small numbers in the tip of the intestinal villi while larger numbers are held in reserve at the base. These lymphocytes function like immune scouts. In many people gluten proteins are toxic to the intestine and are perceived as foreign. Gliadin, the toxic protein fraction of gluten, then causes intestinal injury and initiates a self-perpetuating process of injury as long as gluten grains continued to be eaten. However, since this is not IgE or histamine mediated, skin tests and IgE antibodies to wheat will be negative unless you also happen to be allergic to wheat. The reaction is slower than an allergic reaction and may not be associated with the respiratory, eyes, nose and throat symptoms. However, damage to the small intestine can result in malabsorption, nutritional deficiencies, bloating, gas and diarrhea. Autoimmune reactions can also affect distant body organs and tissues lasting much longer than allergic reaction.”

Per http://www.petplace.com/ re Granulomatous Meningoencephalomyelitis (GME):

“The cause of GME is unknown or idiopathic. Infectious, immune, and neoplastic causes have been proposed on the basis of findings from small series of cases. However, a single cause of GME has not been demonstrated. GME may also represent early cancerous (neoplastic) transformation. However, all theories related to the cause of GME remain unproven.”

The single sentence referring to a small series of cases where infectious, immune and neoplastic causes have been proposed was the crack in the door of possibility that I needed to continue to explore. It was possible that Luke could get through this, but one thing for certain, the prednisone was killing him. I said to my husband, we have to take matters into our own hands. Tomorrow we need to: (1) start winding Luke off prednisone completely, (2) change his dry dog food, (3) get a blood allergy test, and (4) get another opinion.
So Sunday October 7, 2007, we went to Mounds pet food store and luckily found a learned clerk with whom we discussed Luke’s situation. She showed a couple of nongrain products, but recommended Dick Van Patten’s Natural Balance. We got the Sweet Potato & Venison adult product, zero grains. We started to decrease Luke’s prednisone dose by ¼ tablet amounts over the coming days and weeks. We left a message for "AM Vet" re Luke’s status that same day.

Monday, October 8, 2007, we made an appointment to see Dr. Deborah Schroeder at Citywide Pet Clinic (the sole acupuncturist there) who had recently been featured in the newspaper as a veterinarian, surgeon and acupuncturist. We couldn’t get in to see her until the 10/23/07.

"AM Vet" never returned our call from Sunday. She “tucked tail” and left for further TCM training in Florida - that Wednesday. I also recall having some rather unpleasant words with the neurologist about what I thought about the blackhole GME diagnosis and Luke’s iatrogenic Cushing’s disease, getting him off prednisone completely, and taking the X-rays, MRI, lab reports, etc. and getting another opinion. I said, “You never even asked about his diarrhea.” She responded that she didn’t know Luke had diarrhea, but she was a neurosurgeon and doesn’t deal with that. She said that it was highly unlikely that Luke developed iatrogenic Cushing’s disease, and we could take him off prednisone, but she wouldn’t treatment him without another spinal tap. Why had fecal analysis never been done? What ever happened to the concept of treating the whole dog? It’s like all the professionals have just walked away and it was up to me to find the way. Now we’re flying blind and I’m the pilot and I am mad, sad and frightened.

Coincidentally, in the course of my own acupuncture sessions, I was randomized to a Xuehui Wang, Doctor of Oriental Medicine and Certified Acupuncturist from China. She was the only professional who had the virtue to talk to me about Luke’s health even though she is not a veterinarian. She made extra time to discuss Luke’s case as she could see this was a major source of grief and anxiety for me. Besides Luke’s brain inflammation, we discussed the prednisone Rx. She thought that it was interesting that a “hot” drug like prednisone would be used for inflammation. In China prednisone is considered “hot.” She refilled our Tina Ma Gou Teng Yin and suggested Xiao Yao Wan for inflammation and stress. (We would have run out of the Tina Ma Gou Teng Yin if we had not luckily happened to find her. We had prepaid a refill order through Dr. Bearman, but it showed up much too much too late.) Xuehui Wang came to the rescue and I am eternally grateful to her.

Ramping down the prednisone and with the (2) Chinese medicines, Luke belly color was much less hot pink. His breathing was also less labored, but his appetite was still voracious and for several weeks he was scratching the bed at 3:30-4: AM for food. He was however responding well to the new Natural Balance dog food as his poop was excellent, but this would continue to vary along with our diet. What foods “worked” and what didn’t was still being tallied. October 20 was his last day of .25 prednisone tablet (10mg). His breathing was much easier. He had slept through the night for the last two nights! Luke showed no sign of wobbliness or imbalance since his partial seizure in July. Of further note on Luke’s progress, his left eye size, shape, color, clarity, and retina have improved as well as pupil size.

October 23 we finally get in to see Dr. Deborah Schroeder at Citywide Pet Clinic. Luke’s MRI and lab results with entire file had been delivered two weeks prior. I brought in all my highlighted notes and my husband, Dr. Schroeder and I discussed Luke’s case. She concurred that Luke did have iatrogenic Cushing’s. I asserted that he absolutely needed to get blood tested for allergies. She was surprised that he was off the prednisone and doing so well. I told her about Luke’s new Chinese medicine and she said that she thought my herbalist had done me a great favor. We told her everything we had on Luke, including the fact that when he got neutered at six months, he had a reaction to the suture material. Dr. Schroeder acknowledged that Luke had been fighting allergies since that time. Finally someone sees some historic health significance in that event.

Dr. Schroeder said that she is very aggressive with her acupuncture and isn’t afraid to go to his head with it. Sometimes she uses electro-acupuncture as well. Dr. Schroeder also said she thinks a lot of dog illnesses can be traced back to “leaky bowel” syndrome and that diet is part of the cure. Finally we found the veterinarian we needed. She has the knowledge of Western and Eastern and holistic medicine. She administered the acupuncture treatment and reviewed Luke’s case further. Blood was drawn for allergy testing in California. That would take a couple of weeks. She prescribed Immugen (vitamins/antioxidant) and Flojen (probiotic) and said to keep doing what we’re doing because it seemed to be working. I looked her right in the eyes and asked her what she thought. She said, “Honestly, I think this dog is a walking miracle.”

Luke saw Dr. Schroeder for another acupuncture treatment on October 29, 2007. She considered getting Luke on other Chinese meds, but after speaking with Xuehui Wang, we opted to stay the course he was on. If he was a walking miracle, we weren’t going to risk changing that, especially considering Xuehui Wang’s herbal credentials. I asked Dr. Schroeder about Luke’s MRI and CSF results. She told me that the GME diagnosis was made as the result of all the lymphocytes in the fluid. I said I’m looking forward to a cold, wet nose to which she laughed. By October 30, 2007 Luke had a cold, wet nose all evening!

Our next appointment with Dr. Schroeder was November 13th, 2007. The initial allergy test came back revealing that Luke was allergic to: (1) corn, (2) milk, (3) wheat, (4) rice, (5) turkey and (6) lamb. Eureka!! These ingredients are in practically everything he’s been eating! So an allergy-free diet was in order. Now we knew what Luke could and could not eat. Fortunately we had already shifted to the Natural Balance dry dog food. Dr. Schroeder prescribed Gluta DMG which would come later that week. She also said to try a Western European homeopathic herb called Arnica Montana. If we saw results within one hour, keep giving it to Luke. And in fact I did see Luke’s left eye gain some motion after one hour, so we kept with it for a few weeks. The extended allergy test results added yeast and peas to the list.

On November 16, 2007 we picked up the Gluta DMG, which is a liver and immune system support formula by Vetri-Science laboratories of Vermont. Winter was setting in and Luke’s fur hadn’t grown back from where it was shaved for his X-rays and ultrasound back on July 13th. (They even shaved his little nipples off leaving small black dots in their place. I thought that was very heavy handed.) Also the notch on the back of his skull where he had had the CSF tap still had not grown in. We started giving him the Gluta DMG and his fur grew back in abundance! What an excellent medicinal product! This, of course, was in combination with getting the prednisone out of his system, the acupuncture, the allergy-free diet, the Chinese herbal medicines and the antioxidants /vitamins, not necessarily in that order. Luke was finally on the road to recovery!

Luke had two acupuncture treatments before Christmas, one traditional and one electro. Dr. Schroeder was so amazed at his progress, that she said he didn’t have to come back for two months! His coat came in so beautifully; he looks great! His energy and behavior are totally normal. I didn’t want him to wait that long for another treatment though because we’ve fought so hard for every inch of progress in his case, we didn’t want to risk any backsliding. Luke’s left eye is so much closer to normal, it could be easily overlooked. Just recently his left pupil was totally dilated like his right eye, but that lasted only in that light. After apprising Dr. Schroeder of this event, she gave Luke another electro-acupuncture treatment. His left eye is getting better all the time! Hallelujah! Luke has come back from the abyss, is alive and well and doing great!

“A GOOD DECISION IS BASED ON KNOWLEDGE NOT NUMBERS.” PLATO

Plato’s quote is remarkably on target in Luke’s case. Luke’s treatment plan at VMTH was absolutely “by the book.” The GME diagnosis was based on the numbers in the CSF. Death sentence decreed and medicine seemingly designed to speed him on his way there was prescribed. Case closed. Good luck and RIP. This is the part where the “idiopathic” case file gets thrown into the idiopathic anxiety closet and the door is slammed shut. Hands are washed and “we did all we could” gets bandied about. At the cost of ca. $2000 we found out that Luke was going to die and there was nothing we could do about it. That fact that you DIDN’T EVEN TRY to find out what might be causing Luke’s symptoms is what I find so morally reprehensible. No further questions were asked. This is what you call medicine?

Here’s a question for you. If you look back under the neurologic consultation (earlier this document), the file says:

Neuroanatomic diagnosis:
Horner’s syndrome OS, seizures – cerebral cortex

Differentials:
Neoplasia, infection, inflammation – not likely idiopathic due to age and Horner’s syndrome

Recommendations: MRI +/- CSF tap
What does “not likely idiopathic due to age and Horner’s syndrome” mean here? Is this doctor talking to The neorologist? Is the neurologist listening? Oh, it was the neurologist who made that remark!

Here’s another question: In retrospect, can you look at Luke’s test results and reverse engineer his diagnosis? Is there anything in any of the tests that could have indicated what else was going on here considering the “not likely idiopathic” line? The increased protein concentration in the CSF? What about the enlarged adrenal gland and hepatomegaly and left ventricular and atrial enlargements? Why are they working overtime? This is your profession, not mine.

What happened here? Did the doctors simply stop asking questions? I couldn’t stop asking questions in an attempt to try to find out what was causing what. In my gut I knew that Luke’s diagnosis was incomplete. I knew something had to have caused this inflammation, I just didn’t know what, but I couldn’t rest until I could make some sense of this. Love is a mighty motivator and a good thing it is as LUKE WOULD HAVE BEEN DEAD IF I WASN’T DOING YOUR WORK FOR YOU!

In the course of discovery we were very happy and grateful to have embraced acupuncture and Traditional Chinese Medicine. Luke would not have survived without it. Key note to veterinarians: If you want to cure animals, get acupuncture certified. This is an entirely different way of looking at animal health and most importantly, it works! 3000 years of observation have led to this knowledge. Observation (research) is a key word here, as in “knowledge” of a particular animal, in determining what is the genesis of a disease; treating the whole animal, not just looking at a part, and not taking the books as absolute and absolution. I know that some of the teachers at VMTH do have acupuncture certification, and I recommend that if you don’t have it and come across something “idiopathic”, you should pass that case on to them. They know how to ask a lot of questions, take 18 different pulses, treat the whole animal and prescribe nontoxic medicine.

In the meantime, I think you need to review your books and your protocol. In the case of GME, a blood allergy test would seem to be in order along with the other examinations. Also strongly reconsider the pharmalogical answers you’ve been using. In the case of a partial seizure, is Phenobarbital really necessary? Do you have holistic alternatives? How much is too much? In place of immunosuppression, how about immune support? The first rule of medicine is “Do No Harm.” In Luke’s case the medicine used to just do the testing nearly killed him, and the prednisone would have. The suggested alternatives to prednisone would have been even more toxic. Is the future of pharmaceuticals found by actually looking back to traditional Chinese and holistic medicines?

Private practice doesn’t allow time for case studies, but this is one case that should be considered on many levels. If GME, is it granulomatous meningoencephalomyelitis, granulomatous encephalitis, granulomatous reticulosis, inflammatory reticulosis, hestiocytic encephalitis, or neoplastic reticulosis? What is the human equivalent and treatment thereof? Dogs and humans share a lot of the same biology and if you can use dogs to help people then the converse should be true as well.

Also striking in Luke’s CSF was a “rare mitotic figure.” This is a rare cancer genesis moment, I would think. Dogs are becoming increasing important to the study and treatment of human cancers. Chand Khanna, head of the comparative oncology program at the University of Pennsylvania’s School of Veterinary Medicine and its Abramson Cancer Center, notes “Dog cancers capture the ‘essence’ of the problem of human cancer in a manner not possible with other animal model systems.” (“Dogs aid battle against cancer.” Wisconsin State Journal, 10/07.) There they have been developing an immune therapy – a “cancer vaccine” that they’re testing in dogs with lymphoma.

I would think that Ophthalmology would also be interested in how Luke’s anisocoria was involved in all of this. Luke’s left eye has come a long way and is returning to normal. There was a time that I was afraid to look at that eye. There was a time when there was no light behind it. Today it is improved so much it’s amazing. I’m still interested in what an eye doctor would say. We’re hoping for 100% recovery.

This has been an expensive journey. We’ve spent more than $5000 since July 13th. Approximately $2000 of that was spent telling us that Luke was going to die; $3000 of that was spent on disproving that diagnosis. I’d hope someone would consider this report the result of a $5K+ research project. Luke’s sister Leia was “the control.” I don’t know how many people can afford, or are willing to spend that kind of money for what otherwise would be an endgame scenario. If that was the case, I would advise the primary veterinarian suggest a blood allergy test, acupuncture and TCM, Gluta DMG and antioxidant/vitamins. If they cannot afford that, at least advise them to get non-allergen dog food and give them a fighting chance.

FYI, Dr. Ingrid Kohlstadt of Johns Hopkins School of Public Health is creating a groundbreaking medical nutrition book to help doctors treat disease. The book, titled “Food and Nutrients in Disease Management,” will be a 650 page reference book that draws on traditional and alternative approaches will address 60 medical conditions. It’s the first medical nutrition book to emphasize whole foods over isolated nutrients and will also cover food and drug interactions. “The amount of interaction between nutrients and prescription medications is significant but not well communicated by doctors.” said Dr. Kohlstadt. “Food and nutrients are a powerful component of the treatment that doctors can provide.” The book won’t be available until 2009 however. (“Writing the book,” Wisconsin State Journal, I-7, 13 Jan 2008.) Hopefully this can inspire the same for animals.

In retrospect, what have we learned from Luke’s case? Besides knowing that God does answer prayers and miracles do happen, especially when it involves a lot hard work – and that even a B.A. alumna can best your pros in bringing their beloved dog back from the edge of the abyss. (Ouch, that had to hurt, but it needed to be said.) What did I have that your DVMs did not? I had knowledge of this animal. I had time to observe his symptoms and behavior and were thus able to “catch this in time” against all odds. I have the love and the passion to fight for Luke’s life and to ask the hard questions. And I have my husband with whom I could discuss the reason for the rhyme, who trusts my judgment and who without question proceeded with these “alternative” treatments for the love of Luke, a beloved member of our family.

Today you find that Luke’s left eye is nearly 100% (reverse nerve damage?) His pupils are responding in coordination. He has a magnificent coat. His behavior, vitality and energy have returned to that of a healthy dog. His appetite, urination and bowel moments are normal and he has no sign of ill health. His eyes are clear, mind is alert and balance excellent. He no longer has a pot-bellied appearance though he has had trouble shedding the extra weight he gained on prednisone. And he once again has a cold, wet nose. It is a delight to watch him play chase with his sister, dive in the snow, and see the squirrels running in fear once again. I watch him (and his sister) like a hawk, being aware that this good health is a gift that needs to be guarded.

Luke continues to take the two Chinese medicines, Gluta DMG and the antioxidant vitamins. I don’t know how long he’ll need to be on these meds, but at least they’re non-toxic, all natural and affordable. Luke just had another electro-acupuncture treatment and annual check-up. Interesting to note that Dr. Schroeder said that we don’t want to risk any vaccines (e.g. rabies, distemper, parvo) as they may compromise his immune system and we’d be back where we started. Titer analysis will answer those questions. She said Luke case is one in 100,000. His next appointment is set for six weeks out with future treatment going two months out, and so forth according to his progress. If problems do arise, I know Dr. Deb Schroeder is there to help, and with the grace of God, Luke will live a very long happy healthy life.


I’d like to give special thanks to Dr. Deborah Schroeder, Dr. Jody Bearman, Xuehui Wang, DOM, C. Ac., and the Veterinary Allergy Reference Laboratory of Pasadena, CA.

Thanks also to all the resources online that helped me with my research, including:
Dr. John McDonnell, PetPlace.com, Granulomatous Meningoencephalomyelitis (GME)
Dr. Bari Spielman, PetPlace.com, Anisocoria in Dogs, Acute Diarrhea in Dogs
Dr. Debra Primovic, PetPlace.com, Seizure Disorders
www.marvistavet.com/html/body_granulomatous_meningoencephali.html
www.thefooddoc.com/wheat-allergy.html
And a huge thanks to all the people online who wrote about their pets’ food allergies.

Product wise I’d like to thank the makers of Dick Van Patten’s Natural Balance dog food, Vetri-Science Laboratories of Vermont for the Gluta DMG, Thorne Veterinary’s Immugen and those who provide the Chinese herbal medications. It would be interesting to know what they know.

ADDENDUM:
Re Luke’s Titer Results: Dr. Schroeder happily reported that Luke’s titer results were excellent! We will follow-up with the same tests next year.

7 comments:

WebbsWord said...

Thank you for sharing Luke's story. Our dog was just diagnosed with GME. Your story has given me hope. Please keep us updated on Luke. I want to follow his treatment.

LuvingMyDogs said...

I'm so happy you had the courage and conviction to believe your "gut instinct" and not just blindly accept what the vets said. The body, both human and animal, is an incredible machine. It's amazing what a healthy body and strong immune system can fix.
I wish Luke a long and healthy life! Way to go!

Kathy said...

My Matti has recently been diagnosed with GME (after everything else was ruled out). This was very sudden. She's up almost all night pacing and panting. I would really like to talk to Luke's mom to ask her some questions about holistic treatment, if she wouldn't mind. Matti isn't doing very well, and I really want to see about getting her off the Prednisone and Phenobarbital. Thanks.

Luke's Mom said...

Kathy,
Feel free to e-mail me at cjverburg@yahoo.com.

Oscar The Condo Dog said...

Thanks for the uplifting story about Luke. Our little Oscar has been diagnosed with GME and one of the initial questions I had was regarding allergy testing but for some reason my question was blown off...
You mentioned that Luke's allergy testing was done in California, which is where we live. Could you pls share the name of the vet that you used for Luke's allergy testing? We have been seeing a CMP who added milk thistle/SAM-e, garlic, ginger and fish oil to his diet to counter the effects of the prednisone and cyclosporine he is on. He is only 3 pounds so all of these meds must be taking a major toll on his little body. I am really interested in knowing more about the antioxidants and probiotic meds Luke is on.
I feel like I am walking on jello like you said...it is just horrible to know that he is doomed if he continues on all of these meds...
he has been doing acupuncture, which I agree has wonderful effects, but I feel like there has got to be a solution to this... :(
Lisa

Jaime Schultz said...

Has anyone followed the yahoo GME group? My dog also has GME & I have a blog for him.

Anonymous said...

Your story is inspiring and my whippet Jack was diagnosed with GME in April 2012 and we have been through A LOT over the past 18 months. I had similar issues with our neurolo who neglected side effects of the prednisolene and asked me to see another 'general vet' for his UTI, almost shut down liver and other skin-related problems which resulted from excessive pred use - needless to say, i was very angry and lost. I was also going around blindly and trying to find out what i can do. I was fortunate to get an appointment with a holistic vet who, while not a specialist in GME, helped tremendously to take care of his liver and started him on some chinese herbs for his GME and liver. Jack's cytarabine shots had to stop because of his liver, dosages of both pred and imuran dropped considerably and he's been doing OK since. The neuro did start him on Atopica to counter the drop of pred. anyways, i hope we have a miracle too!