Sometimes working on a scale of one isn't enough. Last night I wrote another neuro vet, but I began thinking larger than Carmella's case alone. It dawned on me that in order to get the right people to care about her I was going to need to tackle this problem systemically. Having worked as an advocate for a number of other causes in my lifetime I knew this to be the case in many instances, and the negative and opposing forces I've come up against in the past few weeks called for bigger guns that what I'd been packing so far.
Identifying the problem as one of globalized and system-wide attitudinal fear, I knew that the way to remove such barriers can only come with a multi-pronged approach. Just getting one vet to think outside the box would require that I affect the current thinking of the field in which he/she works, at least begin to make in-roads in that endeavor. Like human doctors, vets are guided to think and to act by whomever's opinion they respect and see as Gold Standard. God himself could come forward and unless He had the official "stamp of approval" ordained by those who set the requirements, they'd dismiss him out of hand even if he walked on water before their very eyes.
Tonight I set about searching the internet for studies to send to Dr. Brantly, sent off 13 that I thought might prove that she needed to be treated now, shocked to discover that nobody besides Dr. Sears was even doing research on a cure, only better vaccines to prevent the disease! Then as I was browsing around I stumbled on a website of Cornell School of Veterinary Medicine, Baker Institute of Animal Health that mentioned Distemper. As I read about a man who'd been memorialized in the school's newsletter as instrumental in developing vaccines for distemper, something bothered me. There was a statement in the write-up implying that Distemper had pretty much been wiped out. Right away I knew I had to correct that misinformation because the perception that the disease isn't really a problem is one thing that only adds to the field's lack of urgency in promoting a cure for it. There are those who find ignorant solace in believing that adequate vaccinations are given to all dogs and that there are no homeless dogs not getting these vaccines, and none spreading the disease in shelters. There are many who still assume that shelters give all the needed vaccinations, but these assumptions are dangerous untruths that prevent Carmella and dogs like her from getting the help they need. One only need go to some of these shelters and look into the vacant, glazed, and squinty dogs' eyes and look at their concentration-camp-survivor-like gaping ribcages, because once you learn what an untreated dog with Distemper looks like you will never forget it!
I just had to write Cornell Veterinary School and let them know that Distemper is still a threat here in the US and that as an academic institution there is an opportunity here once informed for them to be part of the solution.
Below is a reprint of my e-mail to them:
To Whom It May Concern:
I read the article on your website about Max Appel, the man who came up with vaccines for distemper. It says that Distemper (among other diseases) is "a thing of the past". This leaves one with the wrong impression that there is no current problem. I wish! I adopted a puppy from a local shelter that I absolutely fell in love with, brought her home, and found out that she has/had distemper. Now I have spent over $1,000 in only a few week's time to save her life, and had to pursue a rare treatment with Newcastle Disease Virus Vaccine (the LaSota strain) used off-label. She has done remarkably well after the IV, but still needs an injection of it into the spinal canal to kill the virus still remaining in the CNS, only the problem is I can't find a vet willing to do it. They're all too afraid of liability because it's "experimental". Well, I looked tonight for several hours and absolutely nobody in medical journals from what I can tell is offering any kind cure and it seems nobody’s even interested in one.
The man who developed this, Dr. Alson Sears DVM, now 71 and retired has tried and tried to publish his findings but nobody in power wants to hear it. Unofficially, he is sought by word-of-mouth all over the world because his treatment works! Right now there is a real epidemic in shelters needing to be addressed but nobody's openly talking about it either for the most part. Distemper, unfortunately is alive and well in the US, and I think up and coming researchers need to promote this new discovery, test it, and publish it. These dogs don't have to suffer and die, but in order to bring that into being vets need to start using this, not just leave it sitting there. What would happen if all the major discoveries for other deadly diseases were just tabled indefinitely because they were “experimental”? I think we’d be an endangered species and so would our dogs! Everything in medicine is/was experimental at one time, but I think we really need to ask ourselves who we are serving when somebody comes up with something that shows real merit and the medical journals won’t allow that researcher to publish it. That is really unfair because it makes the doctor look like some fringe nut when in fact he’s really onto something brilliant, and it deprives perfectly viable dogs of life and allows them to suffer. Sure, doing a spinal tap is not without some risk, but when dogs have a deadly disease like Distemper and the virus has crossed the blood-brain barrier the benefit is worth that risk.
I believe that if some researchers were to take this on and start doing and publishing clinical trials (and even publish case histories) it could revolutionize the quality of life for pets and their owners, not to mention drastically cut costs of shelters, as NDV only costs about .38 a vial. Promoting prevention is all well and good, but what about all the dogs who are infected on the street and in shelters who will then be adopted out (or euthanized) set up for a life of tragedy?
Right now it is generally accepted for dogs in Carmella’s condition to be given “supportive care” and most vets seem perfectly OK with letting the standard stay that way. They should not be. Just as advocates pushed to get a cure found and recognized as a priority for breast cancer in humans, we should expect no less for our dogs. Researchers already suspect that there are many parallels between Distemper in dogs and MS in humans, so the life you’re saving in taking on this cause, one day just might be your own.
It sure looks to me like the evidence suggests that we now have a cure for Distemper ready and waiting, but until the powers-that-be legitimize it vets in practice are not touching it with a 10 foot pole.
My dog, Carmella now has chorea in her right front leg which has gradually gotten worse as I ask one vet after another to please help her ASAP, they say they’ll “think about it” and then one by one they say no. Some of them neatly rationalize that “maybe” it won’t progress any further, and that she “might still live a normal life and do well”, but this is not a guessing game anyone would gamble their mother’s life with. To many of us our dogs are not merely animals, but another member of the family. I searched for the right puppy for a very long time, very intensively, looking through hundreds of listings, and quite a number of shelters, and I’m not about to just consider her not my problem as these doctors (who have vowed to help animals and preserve life) have done.
I have taken pictures of Carmella’s recovery thus far, so I know that this stuff works, and I’ve seen it with my own two eyes, as has the vet who treated her with it for the rest of her body. He has never done a spinal tap, so that’s why we need to find another vet to do that part. Her paw pads started healing within only 2 days after her IV of NDV, and she completely turned around (except for her neuro symptoms). She started eating and drinking normally, growing, her coat is healthy and her eyes are bright and wide open, she is interested in her surroundings, and she can now be active and play like any other puppy. When I first got her she was emaciated and now she’s gained weight. Unless she were lying down you might not realize that she’s still sick, because that’s when her leg starts jerking, an ominous reminder that the virus is still lying in wait.
I am talking with people here in Georgia about putting in a proposal for a clinical trial, but I think it would be really important for other University vet schools to do the same. Doing so could help a lot of dogs, and how many times do you get the opportunity to be on the ground floor of proving a new cure!
Please run this by some vets you think might be up to the challenge, and let me know what they say.
I’m attaching a picture of Carmella so that you can see what a gorgeous dog she is! Hers, like many others’ lives hangs in the balance.
You can help Carmella get well by purchasing something from my Etsy store. Proceeds are going to pay off her vet bill. If you buy jewelry somewhere I ask that you buy it here and make your purchase really count. Thanks for your support.