Saturday, August 30, 2008
Friday, August 29, 2008
Yesterday was a mix of joy and agony. Our plight continues to find the vet who can and will treat Carmella's Central Nervous System.
Once we'd been put in a room, the female vet tech came in (I can't remember her name, but she is the best one). She asked me if I had had any luck with Dr. Brantly doing the procedure and I said that I thought he was going to do it, but he changed his mind, but that we're still looking. She understood the ramifications of all this, and although happy with the results in the body, knew she was not through yet with what needed to be done in order for the cure to be complete. She commented to another assistant standing in the doorway that this dog was a miracle, beaming from ear to ear.
Dr. Norwood came in and started checking Carmella's reflexes, looked into her eyes, and saw her walk down the hall. She did pretty well, but stumbled at the end once when coming back to the room.
Carmella was in almost constant motion and we had to get her to calm down before he would see the jerking. Eventually she stayed still enough that it started up again and he definitely saw it.
He told me that he'd had no luck with Tuskegee, and was getting pessimistic about whether any of these Universities would help unless they were already doing studies on Distemper. He was still very mousey about calling them and said he'd do it but it could turn out to be another dead end and he couldn't promise anything.
"Like with Dr. Johnson, I can't make them do it."
"Well just make an empassioned plea, show them all that you've documented about her success from the NDV in the body, and advocate as if it were your own mother who was sick and needed treatment."
At this point there were no other real prospects on the table, so I figured this had at least as much chance as anything we've already tried. Up until now we'd just been approaching private practice vets. If this is still considered "experimental" then so be it; we'd just take her somewhere where they do experimental work. Seeing as that UGA is considered one of the best veterinary schools in the Southeast, they should be able to handle this. We just need to get them to try.
Dr. Norwood seemed to be angling at cutting our losses and just going with the partial cure (what we'd gotten in the body).
"The myoclonis could be permanent damage to the myelin and white matter, just residual effects of the disease."
"If that were the case then it wouldn't be increasing over time."
"We could give her Klonazapam, a veterinary version of an anti-seizure drug used in humans." I already knew what it was. Both myself and my son had taken it in the past for our seizures.
"The point is, that if the virus got into the CNS, which it would have to in order to cause that damage, then being in such an enclosed area it would still be present. To assume it's no longer there would just be guessing".
Dr. Norwood was rationalizing to make all the rejections by all the vets we'd appraoched easier to swallow. Maybe for him it would be easier to tell himself that the job was complete, but the idea of leaving this to the imagination and then ending up with worse problems down the road because we made the wrong assumption didn't sit well with me and it didn't make sense based on the biochemistry of the disease.
The CNS is a veritable fortress, and with good reason. It protects the most vital part of the body, the brain; the control tower on which all other function depends. An infection with the deadly Distemper virus is not something you want to leave sealed up for eternity in a dog's head, on a gamble that it will have mercy and not do any further damage. You can hide from it, reframe it, pretend it's not there, and remove yourself from watching its ravages, but it doesn't change the truth. Either it's there or its not. Once it gets in it doesn't just decide its had enough and go away. It's stuck in there and can adapt, hide, and mutate. It gets in via the lungs by piggybacking onto cells that already are able to cross the blood-brain barrier, but it cannot leave the same way it came.
By the end, Dr. Norwood had to admit that the only way to isolate and be sure to eradicate the virus would be to do a spinal tap. He said that UGA would want to do their own tests and probably wouldn't accept his, and it would involve spending more money. I replied that if they ended up doing the procedure then it would be worth it, and besides, if she does have permanent damage the neuro vets there would be the ones to do imaging tests to find any lesions that are there and assess the extent of the damage. If we want to weed out what is damage and what is active disease that's the way to do it.
Dr. Norwood agreed to try again to call UGA's referral coordinator the next day but had been unable to get through the day I came in.
I was up until around 5:00 AM this morning and was too desolate to post an update, and my muscles were starting to ache so I went to bed.
Dr. Norwood was in with a patient when I called this afternoon. Gwen, the office manager took a message that I was asking about the referral to UGA and said she'd have him call back, but he didn't.
I hope he's not wimping out when we need his support the most. When it's all done there will be time to celebrate, congratulate and let our guard down, but until then we are still on high alert. Failure is not an option. Carmella's life may depend upon our level of endurance and ability to go the full nine yards. Perhaps UGA's symbol; the Bulldog, should be our guiding example.
Thursday, August 28, 2008
Then I called Dr. Norwood's office to see whether he'd put in the referral to UGA and the other receptionist, Jocelyn got him to the phone. Dr. Norwood seemed unsure of himself when it came to talking to UGA about the need for Carmella to have this treatment and he wasn't sure whether they would be interested in a cure for Distemper, and maybe even less in trying it on one dog, even if it was going to save her life. The line between who does research and who does treatment in veterinary medicine is very fuzzy and nobody seems to be sure who is responsible for what. On one hand UGA might not do the treatment unless it already fell under a study they had planned, on the other, private practice vets won't do this because they consider it research. So where does that leave Carmella?
Dr. Norwood expressed frustration at "irresponsible owners" out there who don't spay and neuter their dogs and don't have them vaccinated, and when I said to him that even if most people did that then what are those who are currently infected supposed to do. They and the owners who are good owners should not be penalyzed for the actions of others, and the focus of vaccines and prevention left dogs like Carmella absolutely out in the cold. Also, I'm not so sure that the systemic/societal problem can be explained so simply as being due to "irresponsible dog owners", especially in this bad economy in which many are falling on hard times through no fault of their own. I wouldn't be surprised whether some dogs are not being vaccinated because their owners are in foreclosure or were laid off and they have to choose whether to pay vet bills or pay to move so they themselves don't become homeless and hungry. Whether the people who are not doing those things are irresponsible or not, the dogs did nothing to deserve being left up a creek without a paddle, and they deserve to be cured if they get sick.
Carmella is stuck in a no-man's land and I told Dr. Norwood that waiting for each vet to make up his mind while she has to have "supportive care" in the meantime to maintain her "living with" the disease is more costly than if they'd have just treated her when I first asked them to. He said that most private practice vets were "bleeding hearts" and could not live with their conscience if something went wrong. He thought that was even more of a factor than their fear of liability. That just doesn't hold water because if most vets in private practice were that paralyzed from taking any action that could result in a dog's accidental death or injury then why don't they take the same position each time they are asked to do surgery? Every time an animal is put under general anesthesia he/she could die, and he/she could die from the procedure itself, or suffer complications, say for instance open heart surgery, traumatic injuries to internal organs that must be repaired, and a number of other medical procedures.
To me the risk/benefit analysis in this instant is a no-brainer: If they treat her Central Nervous System there is some risk involved, but if they don't they can almost guarantee with 100% accuracy that she will get worse, and eventually die of it. If something happened (and I sure hope it won't), but if it did, then at least they would not have sat around waiting for her to die because they didn't even try to save her. Doing nothing to save her is definitely worse. How could Doctor do-nothing vets like the ones who are able to do this procedure but merely chose/choose not to (and they know who they are) have a clear conscience just because they can say they did nothing to "actively" cause her death or possible harm. That is a rationalization if I ever saw one! Just a trick of the mind, a re-write of morality of sorts. It is no better than to wittness a car accident and to stand there not calling 911 while a man or woman bleeds to death, or even more to the point, if the wittness was a doctor and failed to do CPR or provide help that he had the knowledge and skill to provide in an emergency.
It is the same type of mind-set that allows women to be beaten by their abusive and violent husbands, children to be molested and raped, and allows corrupt judges and government officials to just keep on breaking the law with no consequences ever applied to them. Once we become a society built on excuses and expending more energy on new and creative ways to avoid doing, rather than on ways to do the most we can do to make the world a better place, we lose our humane-ness and our humanity completely.
Tuesday, August 26, 2008
Monday, August 25, 2008
"He's tried and tried to publish, but they won't let him in", I said. "You can talk to him yourself. I have his number and e-mail address."
I adopted a puppy from an animal shelter that I named Carmella, and she turned out to have Distemper. I looked far and wide to find out the best treatment available and came across Dr. Alson Sears’ protocol using Newcastle Disease Virus Vaccine (the LaSota strain) off-label, which is as far as I know the only thing that has really eradicated the virus successfully in dogs. My regular vet tried it on her (an IV to treat the virus in the body) and it worked quite well. When she was first diagnosed they didn’t know if she’d even make it through the weekend, but the treatment really brought her back! The only problem is that she also needs to have it injected into the spinal area, the Foramen Magnum, because it does not cross the blood-brain barrier when injected in the body. Her Central Nervous System is still infected, and although she is dramatically better in every other way, her neuro symptoms are gradually getting worse. My vet has never done a spinal tap before, so although he would do it if he had the skills he does not feel qualified. I have had a hard time finding a vet who is both qualified and willing to do this, and it appears that there are only two board certified neuro vets in Atlanta (and about 4 listed in Athens).
It is a real shame that the medical journals up till now have refused publishing Dr. Sears’ papers on this discovery, and I really think an academic institution should step in and do clinical trials on this treatment and begin to document and publish findings on its effectiveness. As of yet I have not been able to find anybody but Dr. Sears even attempting to look for a cure for distemper. I looked through PubMed the other night for several hours and although there are studies that circumstantially hint that this could work, most of the studies are aimed at testing better vaccines to prevent; not cure the disease. Somebody should be very interested in this, as I have pictures showing that after the initial shot by IV Carmella’s pads completely healed within just about 2 weeks after injection with NDV. This bird-based vaccine, mostly used in the poultry industry is manufactured by Merial right here in Georgia, and Dr. Sears has a formula that is a dog-based serum which he has given people permission to post online and to use to treat infected dogs. One vet I have spoken with tells me that he knows a vet in Alabama who uses the dog-based serum regularly in the body and reports great results with it. This is good, but these dogs need vets who are willing to test and treat in the Central Nervous System as well, and the most likely candidates to take on this challenge are neuro vets with an interest in research.
Maybe Merial would fund a study if you put in an application. It’s something to seriously consider. They seem to have done a fair amount on Distemper and may be very interested if their product could be proven to kill the virus; not just be used as a vaccine to prevent it. It might be worth testing both the NDV and dog-based formula. Publishing something would remove it from the virtual no-man’s land it currently sits in, and could be of great benefit to science and to Veterinary Medicine, not to mention having the potential to make a significant dent in the epidemics in shelters which probably cost billions of dollars nationwide.
It seems that given Carmella’s success with the first injection that as long as she gets this early enough she should have a good prognosis with the spinal injection as well. If ever there was a good candidate for a successful outcome it is her. Her secondary pneumonia is almost gone after several weeks of antibiotics (2 weeks of that with Azithromyacin), and she is otherwise healthy. Her weight is back up, and she is eating and drinking well. She has boundless energy, (unlike before the first shot when she was lethargic). She should be able to withstand anesthesia. I don’t want to wait until the symptoms are too extreme because then it might be too late to prevent permanent damage from the Distemper virus.
Currently she has mild to moderate chorea in the right front leg and sometimes shoulder which happens intermittently. So far it has not affected her activity overall and happens mostly when she’s at rest. In addition she has an occasional moment of clumsiness, but so far no seizures or overt paralysis. Even so, over the past day or so I’ve noticed a gradual worsening and this morning her right front leg was jerking perceptibly even while she was standing on it while I took her out for a walk and she had to lift her paw on a few occasions. (Some of the vets I’ve spoken with in recent weeks took the position that “maybe” it won’t progress but I think that ship has already sailed).
I hope you can help her, as I’ve run out of people to ask in the Atlanta area and I don’t know how much time we have before she gets even worse. She is a beautiful, loving dog and I want to do everything I can to save her.
If you’d like to speak with Dr. Sears to find out more about this treatment he developed I have two phone numbers for him and an e-mail address; (phone numbers removed from public view), and e-mail: AntiDistemper@aol.com
He and I have been in contact for a few weeks now. He is willing to speak with any vet I work with on this.
Please contact me as soon as possible. It would be a big load off my mind if you will do this. Carmella deserves this chance. She is a very special dog, and not only to me. When you meet her in person you will know what I mean.
Sunday, August 24, 2008
When I looked for studies the other night regarding cures for Distemper and didn't find any at all even looking for one, I had the nagging question why? Surely other researchers have thought about it. How could they not? It reminded me of the work I'd done while working on the Marshall Protocol research team and the answer we found as to why none of the researchers other than the one who'd developed the protocol I was on had been looking for a cure for Sarcoidosis. The answer to that question when we discovered the truth was downright bone-chilling. In that case it turned out that the small elite group of researchers who controlled what got into medical journals were all funded by drug companies who had a competing interest with any cure. These companies were only interested in creating maintenence medications designed for the sole purpose of "living with" the disease. The problem was that often even after taking such medications patients developed major organ failure and then death, so in fact the whole premise the drugs were built on was a Big Lie. (I received an e-mail from one such woman in just the past two weeks).
The doctors who were funded to do research on those drugs went to great lengths to conceal the truth, so much so that they would stop at nothing to make sure that nobody would touch any cure which came out with a ten foot pole. They were placed on the committee that set the standards in the treatment of Sarcoidosis through NIH, NHLBI, the department under which Sarcoidosis falls. That was the committee that put out the very propaganda that doctors were using as guidelines on how to treat paitients!
I wonder whether the latter explanation has ever occurred to any of the vets working in research settings or in private practice, and that maybe they are being fed a line of bull by their own industry? Hopefully with a little critical thinking the ones who became vets for the right reasons can see their way clear to question why nobody who runs these journals is interested in publishing a possible cure. It is not always the treatment that's suspect. Obviously if people are empirically reporting that something works, and there are no horror stories of anything going wrong with it when used correctly there must be something there. All these people could not be making this up.
It also seems to me that case studies and clinical trials could be done right now by the vets who have used NDV (and the dog-based serum) in the body and have had success with that. At least that would spur more interest in doing clinical trials on its use in the CNS.
It's time for those vets to step up to the plate and do some writing and submitting to these journals. If they get enough requests from seperate vets and institutions it will be increasingly difficult to keep them out.
In Sarcoidosis in humans it took for doctors to disregard the bull they'd been told by the group of biased researchers and try the protocol anyway, but I don't know whether vets have as much guts. Everyone seems to be hoping another vet will be the first to take the risk, and everyone is pretty much sitting on their hands. Just where does the buck stop? How many dogs have to die of neglect before someone will take this up and do something about it?
Carmella has been restless the past 2 days. She is almost hyperactive, constantly chewing on things including my hands, my pants leg, and other clothing. She has chewed up both cords to my fax machine and now I have to buy a new heavy duty electrical cord before I can use it. Last night she chewed up the strap on my backpack. Her chew toys don't seem to be enough anymore. I finally had to take her out of the computer room and put her back in the kitchen while I was working in that room for fear she'd chew up those cords too.
Well, tomorrow people will be back in their offices and I can pick up where I left off in looking for a vet to do the CNS injection. I hope to hear from the female neuro vet that I e-mailed on Friday and hope that her answer is yes.
You can help Carmella in her recovery by helping with her vet bill. At least then money will not be a barrier to her receiving all the help she needs. As of yet I have had very few buyers in my Etsy store purchasing pieces since the beginning of this effort. I need to raise at least $1,000 and I'm nowhere near that goal. If you would like to help an animal here's your chance to do so in a very concrete way. I hope that my work is not missing the mark in what people are looking for. If you don't see what you want in my shop please contact me through Etsy and place a custom order. Buy jewelry and save a dog!
Saturday, August 23, 2008
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.