New Developments in My Disease Process; The Next Leg of the Race

The oxygen I've been on at night has reduced the overt apneas quite a bit and seems to have improved the daytime dyspnea, but after my last post I was still having quite a time with those narcolepsy type symptoms and the jerking when trying to fall asleep. The pulmonologist set up another sleep study, this time both night and daytime which he said if it came out negative (and he didn't think it would), would prove that the jerking was not breathing-related and would indicate something else. He thought that if it came out positive then that would cancel everything out; meaning that either it would get a false positive or a positive and it would be impossible to know which it was. The one caviot is that I would have to sleep at least 6 hours during the night for the daytime study to tell us anything because if I didn't then I could possibly fall asleep more than normal simply from sleep deprivation. If narcolepsy were present in addition to the sleep deprivation we'd never know. I knew going into it that this would be a feat akin to driving your car between two toothpicks laid almost side-by-side, but if that was the only way to possibly get some information which could lead to more complete treatment then I'd give it a try.

As time went on the jerking at night continued to get worse and the sudden sleep attacks subsided (they come and go in clusters usually every few months). I think maybe I had one sometime during the week before I was to have the sleep study.

Then sometime in the same week (one evening between July 19th and 25th) I was going down my driveway to get the mail and fell really hard on the concrete. My feet twisted and bent back under me and my knees skidded about a foot downhill. It hurt terribly but after I caught my breath I could tell that although I was skinned pretty badly nothing was sprained or broken. I just assumed I must have slipped on something or put my foot down in a strange way and that that had caused it, so I got up and went into the house and washed off the scrapes, thinking nothing of it. It took off quite a bit of skin on my ankle in the front and strangely turned blackish purple after the scab healed and came off. This also happened to the scrapes on the knee even long after applying vitamin E and even CBD salve and time for healing.

Then a few days later came the sleep study on July 29th. I didn't have my usual tech because she didn't work on Wednesdays and only worked at night so I wouldn't have her for the daytime study either. I did make her a pair of earrings though to drop off for her when I was there; little dream cloud stud earrings with rainbow moonstone cabs set in them and a brushed finish. The stones had more flash than you can see in this picture. The sterling silver sheet I cut them out of is quite thick, so getting this much detail into the crevices between bumps wasn't easy!

Just as I'd feared the technician I was assigned that night was not my cup of tea; a 60 something Jamaiican woman with a starchy demeanor, pretty much all business. I had the TV on to distract myself, being slightly nervous, and the first thing she did was ask me to turn it down when she returned to put on my electrodes. (I'd had to turn it up because it seemed like the air conditioning was making it hard to hear). Then, she asked me to move the ice I brought out of the way, and when I told her I get dehydrated easily due to my disease and need to have it next to the bed in case I wake up and need it in the middle of the night or I can't get back to sleep, she started to challenge me. Apparently the pre-registration person I'd informed of my special needs had not passed this information onto her. (In contrast, Gana, the one I usually was assigned to had been nice enough on my previous sleep study to come into the room and ask if I needed some ice water without my having to ask). That kindness had really made an impression on my heart.

This other tech seemed unaware of the fact that my doctor had ordered several other leads to measure the jerking on arms and legs, looked at me as if she thought I was crazy when I asked her about which they were, but then found out as she was applying them that they had in fact been specified in the order, she just didn't recognize them as such. After that she started telling me each thing the others measured. While that was interesting from a scientific standpoint, I didn't have the sense she was giving this explanation for my benefit, but to cover her own ass in case she flubbed it up. Her social stiffness only intensified my uneasiness. Both the skill and the bedside manner of the technician you're assigned can make all the difference in what kind of experience you have during one of these things.

This one must have asked me two or three times if I was on nighttime oxygen as if she couldn't believe it or thought it was strange. She mentioned they didn't get many people in there who are on oxygen. I found that hard to believe! Although my breathing pattern is rare I'm sure that others with underlying conditions also probably are on oxygen. Maybe just not on her shifts. The whole time I just wanted to press a buzzer and have her removed like on the "Gong show", LOL. This was not going well.

She noticed the healing scabs on my leg and asked if I had fallen and I told her I had.

I was deathly cold and even after turning the thermostat on the wall to heat I still couldn't get warmth back into my body once I'd lost all heat. It's some sort of autonomic problem I have had for many years, and unlike most people I have to thermoregulate from external sources much like a reptile.

Between the usual wires and the oxygen canula I had a facefull of stuff on me. The oxygen they used was an old-fashioned bottle on wheels. I hoped that she knew how to use the thing because I sure didn't. She connected all my wires to a boxy-looking machine with read-outs on a screen on the bedside table that I hadn't seen in my previous sleep studies (which she didn't give much explanation about, just said it was the type of machine my doctor had specified to be used for the test). It had what looked like a floodlight attached to it on the side and the face of the square box screen had some lines (which I think corresponded to the different leads). This time in addition to the EMG leads to measure the jerking they also had one that went on near my clavicle on the left side measuring Co2.

After that I was glad to be left alone. I was getting pretty sleepy when she had been hooking me up, but once I lay down to try to sleep then the jerking started and just made me more alert with each time it happened. If any of you have had this for any length of time you will know how exhausting it is, both systemically and to the muscles themselves. I've been experiencing it at least since last January if not before and it's gradually been getting worse and more frequent ever since. Knowing that I needed 6 hours of sleep in order to make a daytime study valid this constant interruption was really frustrating!

The tech came in a few times to fiddle with equipment because her monitors weren't picking up what was on the machine in my room, and that interruption didn't help me be able to sleep either. Then after several hours of violent jerking that left me even more exhausted and exasperated I finally fell asleep. I was awoken by the door opening and a guy walking in to fiddle with the box connected to the leads. I told him that I had finally fallen asleep after jerking and jerking which I thought would never stop, and asked him how long I had slept. He told me about 3 hours and that I was doing well. He and a young woman had just come on for the change of shifts, and although they had woken me up I was relieved that I had some nicer techs now for the next part of the study. The trouble was, then I couldn't get the 3 more hours needed, and next thing I knew the young woman was back in there telling me that the doctor had called off the daytime study since it didn't look like I would get 3 hours more in in enough time. I told her I could keep trying if that would do any good, and that my transportation wasn't scheduled to pick me up until 6 PM that night and I wasn't sure if they'd come earlier or not, but she said that the doctor had already canceled it. I told her I didn't know how many of these Medicare would cover, so I was concerned we'd never know about the daytime sleep attacks; whether they're actually narcolepsy or not. Luckily my transportation service agreed to pick me up early. The broker had called a taxi, so that was more flexible than if they'd scheduled a van service. I showered to get all the glue off, got dressed, gathered my belongings, and went out into the hall where I handed the package containing the earrings to the young woman and ask her to give it to Gana when she came in and she said that she would give it to her. I went down to the lobby to wait for my ride knowing I'd probably fall asleep for the other 3 hours shortly after returning home. I was feeling pretty disgusted as the taxi pulled off with me headed back to my house.

The jerking continued night after night and it got to the point that it was worse to try to go to bed at a reasonable hour because all I did was lie there and jerk until around 4-7 AM, and as time went on it got more and more like 7 than 4. Three hours a night turned into two hours a night and I was getting really worn down after several more weeks of this.

Then within a period of 3 or 4 days during the week of August 10th - 15th I fell 3 times in one week. It was strange because I was tripping on nothing in some instances and in one of them my toe barely nicked the corner of a handbag in my bedroom and it seemed that instead of my foot kicking it out of the way as would have normally happened and my other leg widening my stance to brace myself it was as if my legs did nothing to protect me at all and I went down full force on my hands and knees. This caused another skinned area on my knee because of rug burn on my carpet. It has healed considerably now and doesn't seem to be leaving the big blackish purple coloring behind that my first fall a few weeks ago did, but I knew something wasn't right because I've never been accident prone and 3 falls in one week is unlikely to be a coincidence!

One day after the last fall I began feeling a perceptible weakness in all my muscles (all except in my face). There started to develop not only a weakness but a feeling as if my muscles were over-worked. I was "feeling the burn" so to speak all the time as if I were constantly exercising. I had no idea what on earth was going on but I didn't have a good feeling about it. Then stiffness started to set in. It did not seem related to the last fall because that one only injured my right shin, not the left, and the left leg was where I noticed the stiffness and more of the weakness.

On my return visit to the pulmonologist this past Monday, August 17th I told him about the falling. He seemed totally surprised although he admitted that my sleep study was quite abnormal; that although the oxygen was improving the overall AHI (Apnea/Hypopnea Index), that the Biot's Breathing is still there, and that he saw some other abnormalities he had not seen in the other two studies (evidence that something's progressing with the underlying condition). He told me that the EMG leads picked up the jerking clearly, that it was not happening at exact intervals but with random time in-between jerks, and happening pretty frequently. He also told me that I was technically awake (probably a split second before dropping off to sleep), and that there were transient Delta waves picked up in my EEG in that waking state. (Delta waves are only supposed to happen in the deepest stage of sleep) so this is very strange. The last irregularity he mentioned is that the percentage of the last stage of deep sleep once I got into it was larger than the other stages. He didn't know what these abnormalities meant but definitely thought it was odd.

Then he tested my muscle strength in my arms and legs, asking me to press back against his hand while he was pressing one way. I had to try with all my might to push up with my left leg and after awhile it trembled in straining to do so, but then something really bizarre happened. It suddenly started jerking wildly. It kind of scared me. I told him that nothing like that had ever happened before. He didn't make much of a comment but let go of my leg and said something about the weakness in the left leg which I couldn't quite catch, and then said it was a good thing I was going to see a neurologist, and that she might even want me to see another specialist.

He asked if I'd been having the daytime sleep attacks lately and I told him that no not for a few weeks, and he told me to come back in December, further out than he normally had scheduled me before, since that was the first symptom I had been referred for. He made a comment that for the life of me I can't figure out the meaning of; "This is good for me, but bad for you." Not sure if it was the longer wait until the next appointment with him he was referring to or something else. As we walked out into the hall I told him that I'd pretty much given up on neurologists because as a general rule they gave up on me, and I had tried for years to live with my neuro problems and compensate as best as I could, but now that things are getting worse I cannot afford to let it go any longer, to which he agreed, but then said he wasn't sure what he's done would be of much help to the neurologist and made another cryptic statement; "You don't want a diagnosis, you want answers".  Since we were already headed our separate ways in the hallway I didn't have time to ask him what he meant. I couldn't tell if he was asking me (supporting me in) what I wanted, or telling me what I should want. Realistically I know that in this system of medical care you pretty much have to have a diagnosis for insurance to pay for treatment (and he's well aware of that too), but bottom line, I want it treated and I want to not have to suffer anymore. As I was leaving I said, "Well...It's there whether it has a name or not." He agreed. If I could wave a magic wand I would like to have never had it in the first place and started out whole, but I never had that choice. Not now, and not when I was a child going through other neuro stuff that try as I might, kept interfering with my constant attempts to live a normal life. Quite frankly I'm tired of having to swim upstream, but that's what I'm handed so all I know to do is do my best to enjoy my life and hope that medical science has the technology to fix it after a number of years have now passed, or in the near future.

I left that day feeling increasingly stiff with tired muscles and managed to make it down to where I had to be picked up, but barely. The driver was a jerk and took almost 2 hours to pick me up, then went into a long list of self-justifications as to why and no real apology. All I wanted was to go home as soon as possible and go to bed. My body was aching and I was so tired I couldn't stand one more minute of consciousness.

Thursday was supposed to be the day I saw the new neurologist but another van service failed to pick me up even though I'd arranged transportation to get me there a half-hour earlier than my appointment time. Kimberly, the woman who does quality assurance for the transportation broker system in Dekalb County was flabbergasted that they kept saying they were 20 minutes away, yet never got here at all. Each day it has become more difficult for me to walk and I feel this neurologist might not be like the others I've seen who've done a few tests and looked baffled at the results, shrugged their shoulders and sent me on blankly. I figure if anyone in Atlanta can figure this out and connect all the dots it would be her, but as it got later and later and no driver showed up the clinic told me that I'd have to reschedule. First they told me the first available appointment was "next year", and I told them that was ludicrous for a patient with these symptoms. The receptionist told me she'd contact the doctor and see if she could somehow fit me in sooner and the next time she came up with was October 8th (I believe). I told them this is still not soon enough, and this could be something in which early enough detection is key and I don't want to be ruined for life because I wasn't seen in a timely manner. I asked if this was really OK with her (the neurologist) that it wait that long, given the symptoms I've been having recently. She then told me she'd contact her again, say that date's not acceptable, and mark the message "high priority", and that most likely I wouldn't get an answer until Monday when a certain woman would be following up on it. I hope the neurologist is not put off by my assertiveness but given the fact that I have no caregiver or help at home to help advocate on my behalf I have to make absolutely sure that things go as they should. I just worry about what will happen if I get to the point that I can't do that for myself anymore.

I had hoped that my testing would be out of the way by the end of September and that I'd be on some sort of treatment by then because my son has extended EEG monitoring coming up at Emory then and I want to be there for him during that time (at least during the day). They require that somebody stay with him to keep him awake when he has sleep deprivation. This is in preparation to his having laser surgery on his brain for a benign tumor which causes him to have seizures. He has the chance for a normal life if he can get through that and possibly some other tests. They need to pin down exactly where the seizures are coming from and he has to have a certain number of seizures on videotape in order to meet the qualifications for the surgery. This surgery is still very new technology, so the screening process is rigorous, and a board meets at the hospital to make the final decision as to which people get it and which don't.

I'm trying to rest as much as I can and not walk around too much, trying to save my strength until something can be done. Out of necessity I've had to cut back on the number of hours I'm spending on my Etsy shops because I'm absolutely exhausted. I find that I jerk less when I try to sleep mostly in the daytime rather than at night, so I'm listening to my body until there is something that will get it to stop. I don't have much of an appetite but I notice I am a little more hungry after I sleep for a few hours during the day.

Healing After Distemper! Some Improvement In Carmella's Myoclonic Jerking!

Did I mention earlier that the left rear leg jerking that had just started before Carmella had her NDV treatment in the central nervous system is gone?!!! That was the newest damage she'd obtained from the Distemper virus, so it's logical that it would be the first to heal.

The biggest hurdle is the jerking in the right, front leg which was the most severely affected. I have noticed just a little change there. It used to be more pronouced when she was asleep than awake, but now if she is deeply asleep it will become much milder and for short periods even stop temporarily!

The day after I noticed this improvement it seemed she stepped on a rock in the back yard in the past day or so and bruised the pad, so is limping and holding it up. Her stepping on that rock with that foot could mean she's not favoring it as much (which is both good news and bad). Clearly she's not as careful with it as she has been, thus the injury. I hope that bruise resolves soon so she can start using it again. It's important for her healing myelin that she stay active. It's been bitterly cold and she really didn't want to limp out there to go to the bathroom tonight and has been whining when I'm in the computer room and she's in the kitchen. She's gotten used to keeping me company lying on a wicker chair in here while I'm doing my work online.

Her Demodectic Mange is still itching her somewhat but I think she's over the worst of it. This past Saturday she went back for her third dip. Dr. Norwood didn't see her because they want to wait to do another skin scraping.

Next time when she has the skin scraping I need to talk to him again about the research paper.

It will be vitally important that he and Dr. Muller stay on this and share their data and submit Carmella's case history to medical journals because there are still ignorant people out there, those who not only do not know about this, but who want to see it fail for personal dysfunctional reasons. I think that is very sad. I ran across someone on one of the dog forums who was not genuinely interested in this treatment but went out of her way to try to debunk it. Her dog had myoclonus in her back leg which will most likely do her in as it progresses to full-blown seizures and/or paralysis if left untreated.

This particular woman is one of those people who has an emotional need to use her dog to hold on to an "illness identity". This is common in the human disease community but less so in animals, but I believe that when it is projected onto an animal it closely approximates Muenchausen by proxy. People like this resist or sabotage treatment in order to prolong the secondary gain they get. In humans they actually make their children sick by giving them toxic substances or not giving them needed medication, etc, but I think the principle in denying an animal medical care that will resolve a disease is the same principle. Animals depend upon us to take care of them just like children and when they're sick they are at the mercy of the owner. If the owner thinks of the animal's needs first they are taken to the vet and everything possible is done to cure or at least help them the best they can.

When somebody continues to post on forums that they or their dog doesn't need treatment and tries to prevent others from getting lifesaving treatment when there is something they can do about it, then that is just flat-out medical neglect; sabotage and self-sabotage!

The sad thing is that her dog has no voice in all of this. The dog is the real victim while this woman gets all this attention by dragging out the duration of the dog's positive Distemper status, asking pointed questions while her dog waits, just to try to pull others into a fight, and discounting any proof we offer her. Apparently her own vet has been indulging her in casting these aspersions.

Well, it's like this; one can either see the glass as half-full or half-empty. Medical cures are a beautiful thing and everything should be done to support them and boost them up when they come along. I can tell the difference between real interested questions and pointed questions which are really snide statements masquerading as questions. The latter has no intrinsic value. It seeks to tear down a good thing; not learn about it.

As a matter of fact I received one of these zingers by somebody tonight who read about the requirements of the Etsy street team I run for jewelry artists. Since I didn't feel it was a legitimate question I simply answered by saying that what she was saying sounds more like a statement than a question. Again, another form of self-sabotage on her part. If she'd wanted to apply for membership in some indirect way this was not winning her any points. If she didn't like our requirement of listing at least 1 or 2 items a month (which I think is very lenient if you ask me), then she should have just applied to another team. Instead she went out of her way to seek me out by convo and get nasty to me. Maybe she was bored and had too much time on her hands. I don't know, but clearly she was not using that time to make jewelry, LOL.

I surely did not need this after being sick again the past few days. I came back online feeling better, answered my e-mails and convos only to find what amounted to a verbal fart or dog-doo in the flaming bag in my Etsy convo inbox! Usually people are writing to say nice things about the team and more than willing to accept the requirements to get in.

On a happier note; I finished several more pieces of jewelry and got them listed tonight! I've had to catch up on my jewelry because of all the time recently spent on Distemper-related activities, and it was a relief to have some new things completed and ready for sale in time for Valentine's Day. I hope to finish a few more before it gets too late for customers to order.

The Facebook Distemper group continues to grow. We had one loss recently. The woman in Indonesia received the NDV and her vet gave the first part but then balked when it came to injecting it into the spinal canal and at that crucial time began calling around to University vet schools to get some other vet to take the risk. Unfortunately the owner lost hope and decided to have him put the dog to sleep. I still find it perplexing that vets are willing to kill dogs on purpose yet they are afraid they'll kill them accidentally while trying to save them.

Carmella is over here in the chair fast asleep right now and her jerking has really slowed down. If that's not proof her Distemper is cured I don't know what is! It was clearly the NDV that caused the improvement because as fast as her disease was steadily getting worse before treatment it was not about to slow down right up until October 1, 2008 when she had the CSF tap procedure. It is clear that the collision course she'd been on had been aborted when I brought her home from the vet, and then it was all over but the healing! What Dr. Sears said about it being a minimum of 4 months before I would see any noticeable regeneration has born out to be true. The next 8 months could be quite exciting as I watch for even more!
http://Giftbearer.etsy.com/

Distemper Cure-Letter To The Editor of Time Magazine

Last night while searching on Google to see if there had been any more written on Distemper I ran across an article called "Distemper Cure". I clicked on the link and found that it was on Time Magazine's online news version along with articles about Obama, the Blegojovitch scandel, and various other current events and editorial topics.

The article painted a very bleak picture of dogs with the disease, stating that dogs who got it were pretty much hopeless, that they were religated to limping around the yard in various stages of wretchedness until they met an inevitable and pathetic death. The article stated that there is "no cure".

I just could not let that stand if there was hope to offer, and so I decided to write in. I sent the following letter to the editor;

letters@time.com
sent by e-mail 1/10/09

Dear Editor,

My dog Carmella has recently had a rare treatment/cure for Distemper. In your article it says a cure does not exist, but Dr. Alson Sears, DVM has discovered one and I can attest that it works. The first two surviving dogs are Dachshunds living in Thailand, and Carmella is the first documented case on US soil (the third dog in the world), then the 4th was recently treated successfully (a Boston Terrier).

This protocol involves the off-label use of Newcastle Disease Virus vaccine (Newcastle Disease virus only infects chickens, so dogs cannot contract it, but because it’s in the same Paramyxovirus category as Distemper it elicits a heightened immune response in the dog, allowing its own immune system to kill the Distemper virus. The first part is given as an IV to treat all symptoms in the body, and then more is injected into the spinal canal at the base of the skull (where spinal taps are done on dogs) to eradicate the virus in the Central Nervous System.

I have carefully documented Carmella’s results in my blog; http://artlifenewsblog.blogspot.com/ and taken photos which clearly show her healing. This was not a spontaneous remission, as she was progressively getting worse until the time at which she received this treatment, first for the body, and the second part for the Central Nervous system.

Dr. Sears has not been able to get the right research facility interested in his cure because too much emphasis is placed on prevention and that’s what tends to be funded when it comes to clinical trials.

I myself contacted several University Veterinary schools including UGA and The University of Florida and both were very guarded about even looking into the science involved. It seems to be a taboo subject but if dogs’ lives can be saved by this discovery then vets should be using it and research facilities should be willing to invest in clinical trials.

As I see it, merely focusing on prevention does not solve the problem. There are always dogs in shelters who were inadequately vaccinated, puppies born in the woods, and even cases where dogs get the disease from the Distemper vaccine itself! My vet who has spent his life educating pet owners about the importance of vaccinations had to admit when the facts became apparent that this approach alone was simply not preventing the disease. Many erroneously believe that Canine Distemper has been almost eradicated in the Western Hemisphere, but in reality many cases are not represented in the statistics due to dogs being quickly “put down” and many dogs that are not ever diagnosed but instead are assumed to have and are wrongly treated for bacterial infections which never respond to antibiotics.

If you would like to do a follow-up article for either your online or printed magazine I would be willing to be interviewed and have your staff include the evidence that exists that Carmella is in fact recovered.

I would also be willing to put you in touch with the man who owns the two Dachshunds in Thailand, and possibly the owner of the Boston Terrier (if she is willing).

Dr. Sears has his e-mail address as contact person on various documents displayed online regarding the protocol and is open to any fair inquiries about how this works and the science involved. He can be contacted at AntiDistemper@aol.com

The two vets who treated Carmella in this two-part process may be willing to speak about this as well, as they are considering writing a case history on my dog at some point.

Within only 2 days after the first part of the treatment Carmella’s hardening and scaling paw pads began healing, and within only 2 weeks they were completely healed! This part was no less than miraculous. She gained weight, started eating suddenly, became active again, her eyes lost their haziness, and she more than doubled in size within a little over a month.

It took so long to find a vet who was both willing and able to do the CNS part of the treatment that while waiting Carmella developed some brain damage which left her with myoclonic jerking in the right, front leg that is pretty pronounced. Although less dramatic than the body treatment, the jerking/neuro symptoms stopped worsening immediately as soon as the NDV was injected into her spinal canal. It was obvious to me because of the almost daily disease-progression she’d suffered prior to the procedure that the NDV had in fact stopped the disease at that point.

She continued to become more and more robust and developed incredible muscle tone in the months afterwards since October 1, 2008 when this was done.

Please contact me at (e-mail witheld for public re-print) to let me know whether or not you can do a story about this. I believe this is news that will be of interest and a great help to many dog owners, shelters, and vets.

Sincerely,

Pippit Carlington

Carmella's Mange continues to heal, slowly but surely, and today I found some Borax at Kroger. Surprisingly they did not carry it at Walmart.

Every day that goes by she is looking a little less red and inflamed.

Last night I tried my best to file down her toenails with that Pedi-paws sanding device and although feeding her pieces of kibble from my other hand allowed me to sand some nails down a little bit, it soon became a wrestling match with her chewing on my hands as though they were steak bones.

Then she began trying to tear apart her nice new bed, first with her claws, and then with her teeth. She looked for all the world like a child throwing a temper tantrum when she didn't get her way. I was horrified and yelled at her that she better stop that right now because I just bought that!

I'm glad she did not cause any damage to it and has not tried to do it again. I lucked out in finding such a high quality dog bed and hope it lasts a long time because I don't know how long Sam's Club carries those.

Be sure to take a look at her on the Carmella-cam now, as you will have a bird's-eye view of her in her bed.

The seedpods have been fired, but I need to re-attach new headpins at the top where they'll connect to the chain.

I hope to start the watercolor series on Carmella soon!

***This just in***10:12 p.m. EST

I heard back from Dr. Sears after sending him Carmella's update. He now has a website for questions and answers regarding the treatment with NDV and about the dog-based serum that he invented using cytokines produced by a healthy donor dog after the introduction of Newcastle Disease Virus Vaccine, spindown and seperation from red blood cells.

If you or someone you know has a dog with Distemper or you think a dog might have it go to Dr. Sears' website here;

http://www.treatment4distemper.com/

The site is still relatively new but it has a blog, still photos, podcasts, description of the protocol, including the most up-to-date understanding of the science behind it, and several short video clips showing dogs with Distemper-induced seizures. These clips are rather disturbing and have somewhat spooky music in the background, but they are effective.

I've written him tonight after looking at the website and asked if he would like to use any of the pictures of Carmella before and after treatment, and a video clip showing her myoclonic jerking. Once the site fills out some more and is made a little easier to navigate I think it will probably climb in Google position, as it's very nicely done.

http://Giftbearer.etsy.com/

Carmella's New Fashion Statement

Things have been pretty uneventful lately for the most part but finally there are a few things of interest to report.

I got Carmella a muzzle at Petsmart for those times when I want to leave her out of the kitchen for awhile with me while I'm in the computer room or when she is on my bed and I don't want her to chew me or the computer wires.

I'm hoping that this will get her out of the habit of chewing (especially on people) when she figures out she can't do it. I put it on her right when she gets too rambunctious and starts chewing and nothing I say is getting her to stop.

I've noticed that although she tries to get it off and looks kind of disconcerted for awhile, eventually she does stop trying to chew.

I'm hoping that if I pet her when she can't chew me and repeat that often enough it will break the habit altogether at some point.

Today when I was outside with her throwing sticks for her to fetch she really chomped down on me pretty hard while she was jumping up into the air indescriminately trying to grab anything she could even if she could not reach the stick. She almost bit through my shoe once.

There are these berries she loves to eat that grow on the ornamental edging grass that surrounds my back porch and she alternated between eating those and chasing sticks. Luckily they aren't poisonous. She seems to like those even better than her dog food, LOL. I think she might be a vegetarian by nature. It's interesting that she loves things like apples and berries.

A woman posted on one of the Distemper messageboards who is from Texas and she and her husband have a small animal shelter. Several of their dogs have Distemper and one dog has died from it. They are worried that all the others might catch it too because they have not been able to get a vet to do the NDV injection into the Central Nervous System of their own dog, (a Boston Terrier) who was diagnosed almost a year and a half ago.

I gave her Dr. Muller's contact information and they have been in contact but so far their local vet who did the part of the treatment for the body has not been willing to inject the NDV into the CNS, so her dog has been getting worse and worse. He has signs of impending blindness and is starting to have some problems with coordination.

Since she is not able to travel here, I sent her some listings of vets in Texas and also told her to point out to the vets there who are reluctant to do this that Carmella is a living example proving that this treatment will stop the disease and that there can be no negative effects as long as the procedure is done as directed.

If any of you readers live in Texas and know of a vet who might be willing to try this please let me know and I'll pass that contact information onto this woman. It will be great if her dog can have the same chance as Carmella to overcome this disease, and it could prevent her other dogs from catching it also.

I am working on developing a list of vets who will do this so that when newly diagnosed dogs come along they can get help quickly without having to wait until it's too late.

A few days ago I made a small sale in my Etsy shop; a pair of my Haiku earrings made with nicely polished wood, oxidized copper wire, and (in this pair) Turquoise.

I am now down to 3 pairs remaining and I would love to sell the rest of them and make some new ones. If you like these and are interested in a particular stone at the bottom please don't hesitate to ask. I am glad to do special orders. These are great if you want something really nice for a good price. They are reasonably-priced enough to get a pair for several friends and/or family members. Just think; you could have alot of your holiday shopping taken care of.

I offer free gift-wrapping to those who would like it throughout the season. Just convo me on Etsy and let me know in the comment section when you purchase that you'd like them gift-wrapped. I just bought 3 nice rolls of ribbon today in moss green, rich bright red, and a white with sparkly irridescent blue and pink speckles.

I also got an interesting knitting spool that is a little wider than the wooden ones I have for wire and am planning on trying some new and interesting things with that while I wait for my rubber stamps to be completed, and in-between construction of the seedpods.

One more donation has come in for Carmella's vet bill recently. I will need to put another payment towards it again soon, so thank you everyone who has contributed, and those who haven't, keep it coming! Every little bit helps. You can also buy jewelry for your loved-ones in my Etsy store, and/or buy a $5.00 ad slot on my blog to help Carmella.

http://Giftbearer.etsy.com/

Seedpods and Sowing Seeds

I've been catching up on some things I haven't had time to do while I was looking for a vet to finish Carmella's NDV treatment. Updating the blog for the art jewelry team I run, The Art Jewelry Collective, posting about the latest trend among jewelry supply companies to cut corners in response to the failing economy, and working closely with my Website Committee chairperson to arrange for what we need to do to get our new e-commerce site up and running in time for holiday shoppers. This is a big deal especially because sales on Etsy have slowed, not only for me but for others as well, and we really have to ramp up our marketing strategy and have everybody pull together to make this season profitable for all. We will be fighting increasing gas prices, higher food costs, lay-offs, and foreclosures; all events that cut deeply into the budet of our potential buyers.

It would be the easy way out to do the same as the supply companies are doing but I won't and I will encourage my team to stay strong and believe in themselves even at times when one can hear a pin drop. I am wearing a little thin with the latest dry period myself, but I know that the last time this happened I began to make my most expensive line and lo and behold somebody bought two high-end bracelets within just 2 months of each other. I'm sure there were some who thought I was nuts for taking such a risk, but it paid off in the end because although I have jewelry in price-ranges from $8.50-$900, it was not the line at the lower end that people wanted (although I made that line with the same standards of workmanship as the other).

With a little thought and planning I feel that I can do that again this year with my new pictorial line and the seedpods I'm currently working on, and if the team follows my lead and comes up with their own exciting and daring designs they too will see the fruits of their labor. Once the website is completely built and up and open for business then all members will need to throw the skills they have into the common pot to advertise and promote it. Then we may be pleasantly surprised at the kind of sales we bring in. Our street team is growing larger and larger and there is alot of manpower there to be tapped into if each member gives of themselves.

My seedpods are coming along, although right now they are very delicate with their paper lantern-like covering. They need to be coated with 15-20 layers of fine silver (metal clay) slip and must be fully dry between each coat so that previous coats don't flake off. The drying time is what is the most time-consuming. Right now I have 3 coats on them.

You can see them from several different perspectives here, from the side, from the top, and head-on. If you have never seen metal clay in its un-fired state it looks alot like spackle or plaster.

The wet slip is applied with a paintbrush over an organic item from nature such as a leaf, stick, or pod. It is best to mix in just enough water to make a mixture that's about the consistency of thickening pudding or slightly thinner depending on what you're trying to cover. You want it to be thick enough to adhere well but not so thick that the surface is too lumpy or loses the detail you want to maintain of the object.

If you want to fill gaps and perfect the shape of the piece you're working on you will need it thick enough so that it does not roll off the gap; just the right thickness to fill it in as it dries. Using a hair dryer can help dry your object faster, but if your slip is fairly thick it may still need to dry for a few hours or even overnight to be sure it is dry underneath as well as on top where you can see it. Often it looks dry but moisture can sweat through and still come to the surface over a period of time if you're not careful. As the water dries the layers compress and it seems as though you've made little progress, as each layer when dry is quite thin, but after about 3 or 4 layers you will notice the piece taking on some weight.

Doing hollowforms can be tricky and takes practice, and firing them can be challenging, the deeper they are the more diligent you must be in making sure all sides are heated fully. Some people use several microtorches at the same time to do this if they do not have a kiln. When firing on a stove on top of a metal grate or screen the piece must be turned periodically. If you're adding other parts to it, multiple firings are necessary to ensure durability.

I still have not heard back from Dr. Norwood regarding the anticonvulsant for Carmella and whether he made contact with Dr. Sears or Dr. Muller.

On one of the Distemper messageboards there's a woman from Texas whose dog has had the NDV given to treat the body but now he needs to have the part Carmella just had; in the CNS. I've been in contact with her and am trying to get her hooked up with Dr. Muller so that he can talk her vet into it locally. She doubts that she can travel to Atlanta, but may do that if there is no other choice and her dog gets worse. She thinks her vet can be talked into it if Dr. Muller explains that it was not any harder than doing a spinal tap, however I had one or two vets I thought would say yes eventually and they didn't. Had I not found Dr. Muller when I did I may have only had two choices; Indonesia or the Phillipines (and there would have been no way I could have come up with the money fast enough for such a trip). Even so, I would have traveled within the US just about anywhere if that's what it took. I hope that this dog will make it and end up another success story like Carmella. Apparently Dr. Muller is out of the office until Monday, but I hope he'll get back to this woman and her local vet soon.

Carmella has been very feisty today and wanted to wrestle so I figured I'd indulge her so that she'd get tired and calm down. She was tackling my foot and chewed a hole in my pants leg. Luckily these pants aren't new or I would have been pissed.

I took some more pictures of her tonight in the kitchen, most of them of her with her mouth gaping in one position or another, or of her chewing on her rawhide chew stick.

After about an hour, finally she was exhausted and crashed. She sacked out below the oven, her right paw jerking.

Even so, I think I notice a slight little bit of improvement! Usually when she has been asleep for a long time it is really severe, but tonigh I see a slowing down of the movement and some pauses in-between. It goes through periods now where it is not as severe. If so, then we are already about 3 1/2 months ahead of predicted! Keeping my fingers crossed that the improvement continues! Be sure to watch Carmella live on Carmella-cam!

http://Giftbearer.etsy.com/

Back To Dr. Norwood

Carmella saw Dr. Norwood for the first time in over a month. I got her up early this morning and she had her first bath since she had been diagnosed. She can finally now get into the water without fear of disease-progression. It was still pretty new to her and so she was a little nervous about getting rinsed off and then dried with a hair dryer, but got through it and felt spry and renewed, barrelling down the hall in the house, and when my ride got here to go to the vet she bounded up for that rare ride in the car.

When we arrived a little early there were several other dogs in the waitingroom, and my friend who lives near me brought her cat at the same time to have her claws clipped. The office is divided in half in the center of the room with a seperate entrance for cats and the other for dogs, so we had to sit across the room from each other and shout over the central office cubicle in order to talk, so we did little of that.

A small Bichon Frise came in and Carmella whined and pulled at the leash as though it were a rabbit she wanted desperately to get to, and then a large black male dog entered not long after that appeared to be part Labrador and possibly a little bit of Newfoundland. Both he and Carmella were straining and wimpering loudly, wanting to play. Christian soft rock played from a speaker mounted at the top of the counter, and I noticed that they were also selling scented candles as a sideline. I suspected that the economy left them with less regular business, so they were trying to supplement what losses they had taken due to that. Felicia came over and petted Carmella and commented on how good she looked. Then said to me, "You are one of the most determined women I've ever met."

"Yes, but Carmella really is a miracle" I responded.

It wasn't long before Carmella was called back, and Gwen came in and took down the information about what her current situation was. I reminded her about the anticonvulsant and that Carmella needed to be wormed again (I'd seen one crawling right out of her yesterday), and asked if Dr. Norwood had said any more about publishing her case history. She said he hadn't said anything else to her since the day the drug reps had come.

Carmella jumped up on her and darted around the room in excitement. She seemed to be able to feel the love coming from her and from the other staff and she remembered all of them. Gwen took her into the other room where there was a scale and weighed her. She weighed 31 pounds (1 more than last week). Her weight has more than doubled in the time they'd been seeing her!

After awhile Dr. Norwood came in. He had cut his hair and looked refershed from his trip to Aruba. Around his neck hung a large shark's tooth on leather string. He was not wearing his usual glasses. He came in smiling and Carmella went over and jumped up on him right away. He asked how she was doing and I told him she got through the procedure with no problems, that Dr. Muller used saline with the NDV instead of the delutant, and that aside from the usual jerking everything was going well.

Then I asked about his publishing and he said that he would like to do it jointly with Dr. Muller rather than seperately, but that he hadn't gotten in touch with him yet about that, that he was going to soon.

He said as for the anticonvulsant that he could write a prescription and I could get it filled at a regular pharmacy since the same drugs are used in humans.

I asked about a minor thing about Carmella's nose (some intermittant snorting that developed over the past few weeks that sounded related to congestion) and he said that most likely it was allergies but if it got any worse to let him know. He said there was not much they could see up the nose without putting a scope up it anyway.

Then he left the room to look at some books regarding Phenobarbital and Klonapin, saying he'd come back with a prescription.

I waited for some time and he did not return. Then the male vet tech came in and told me that Dr. Norwood had decided not to prescribe an anticonvulsant after all, but would just monitor to see if there were any seizures that came on later. My mouth fell open. I said didn't he know that myoclonis is a form of seizure, and he said that he took it to mean a Grand Mal seizure. I told him that having had this myself in the past and both me and my son seeing neurologists this had been explained to me by doctors as a form of seizure and that they do prescribe anticonvulsants for this too. I asked why Dr. Norwood offered to give Carmella Klonapin before she was treated and now that we don't have to worry about masking it that he does not want to do it when it's appropriate. I told him on no uncertain terms that Dr. Sears, the Distemper expert had recommended it and that he was not going to be happy about her not having it, that the jerking was interrupting her sleep, and I'm sure it's exhausting. He said he was just passing on what Dr. Norwood told him to tell me and kind of shrugged. Then I asked if he remembered about the worming shot and he looked like a deer in the headlights.

He flipped through Carmella's chart absent-mindedly. "Didn't she just have it?"

By that time I was starting to really get annoyed. "Yes, over a month ago. A worm just crawled out of her butt yesterday, so she needs to be treated for it again."

"They get those from fleas. Have you seen any fleas on her?"

"No, not recently, but she did have a few before I got her on flea drops. She's on Vectra 3D. Also she's on heartworm preventative that's supposed to also cover other types of worms. " I described what came out of her yesterday as a white worm with a triangular head.

"That only protects against round, hook, and whipworms, not tapeworms. That sounds like tapeworms."

"Gwen wrote that all down and I told them over the phone that she had worms again and needed it again. Are you not reading the chart? Also, would you please have him come back in here (Dr. Norwood)?"

He said OK and then went to get the worming stuff from the back.

He took a long time. Then Gwen came in and said they were getting ready to close and could I come out to the waitingroom, and I told her I was waiting for Carmella to have her worming shot and to talk to Dr. Norwood about something else.

"She hasn't been given that yet?"

"No, the vet tech didn't seem to know anything about it. I had to remind him. Somehow he's not getting the message of what's been written down here."

She went back and hurried him up and soon he came in with the injection. Gwen held Carmella and he gave her the shot, saying it might sting a little. Carmella wimpered slightly and then it was over.

I went out, settled up my bill with Felicia at the front desk, and then saw the friend I'd come in with standing near the side exit door.

"Aren't you done yet?" That seems to be her mantra. This woman has gotta-go-gotta-go syndrome. It doesn't matter where we go, she's always "gotta-go."

Gwen said, almost; that I just needed to speak with the doctor for a minute.

I went back into the room and Dr. Norwood entered soon after. We had the same conversation I'd had with the vet tech regarding Myoclonis and he claimed it was muscular, not seizure. He said he'd show me the book. In a minute he came back with a medical book to show me the definition of myoclonis. Although it did not list a cause it alluded to it, referring to a "disorder involving motor neurons" and that it "originates in the CNS." I pointed out how all that is true and it is not mutually exclusive of seizure, that upon EEG patients with myoclonis show seizure activity in the brain. He may have meant well but he didn't seem to fully understand what causes myoclonic jerking. Granted he is a GP of veterinary medicine but I think my human GP would know the answer to that question. The issue is really that he has never had a case of myoclonic jerking, only seen Grand Mal seizures.

Then I also told him about Carmella's incessant need to chew on people all the time and how it coincided with the time period in which the jerking began. He responded that we don't have any way of knowing whether it is due to something that resulted in the brain or not. He seemed to feel that if he didn't know then he was going to assume it was behavioral. I said that I'd trained many dogs and that she was very intelligent and I'd successfully trained her to do other things, but this so far I've been unable to break her of. I also said that it did not seem to transfer to long-term memory if she stopped once in awhile. She'd go back to it again as if she'd never learned not to the next time.

Then he brought up the possibility of liver damage. "I don't want to fill her up with drugs", said Dr. Norwood. "I usually give this to dogs that are having convulsive falling down, foaming at the mouth type symptoms. I usually give it for a full year."

"Dr. Sears says it will take 4-6 months..."

"6-8".

"...before we'll see any improvement in the jerking and that she should be given treatment for neuro symptoms in the meantime until the NDV started allowing her stem cells to create new myelin. He says this will help all neuro symptoms. He might not even think a whole year is necessary."

"Let's just see if the treatment works and that's all we can do" Dr. Norwood said edgily. "I can show you the protocol. It says for seizures. Maybe he just meant as a preventative."

"Talk to Dr. Sears and lets get this clarified."

"OK, I'll talk to him on Monday".

If it looks like it will be OK to prescribe it can you call it in? My friend was going to pick up her own medication at the pharmacy today so we thought we'd get Carmella's at the same time, but it's always iffy as to when she can bring me out here."

"Yes, I can do that. I'll call him Monday and let you know."

I thanked him and he asked me to schedule another check-up for Carmella at 6 months. We agreed that she might aught to have antibody tests to confirm a clean bill of health in the body and another spinal tap through Dr. Muller every year for the next 3 to confirm the virus is gone in the CNS.

My friend, V had taken her cat home and then come back and was waiting for me in the parking lot. The door was locked and I had to get Gwen to unlock it for me.

"V left to take her cat home."

"She's very antsy" I said motioning out the exit. She's waiting out in the car."

"She doesn't like to wait around?"

"No."

I came home, put Carmella back in the kitchen, and went to Sams Club with the same friend, came back, and let Carmella out in the back yard to run around while I vaccuumed and mopped the kitchen floor. It was kind of hot and stuffy in the house so I opened the front door and turned on the ceiling fan. When the floor was dry I let Carmella back inside. I washed a load of dog towels and her two black cushions. Now everything smells fresh. Carmella's fur is nice and soft, and she's all comfy and cozy.

Be sure to take a look at Carmella-cam and watch her live in the kitchen. You may catch her doing something really cute!

Next order of business is to try to find a vet school that does the test on the strain of Distemper found in Carmella's cerebrospinal fluid. There's a researcher in Italy who told me he'll do the test for free and I'd just pay shipping but it turns out shipping to Italy for something that needs to get there soon is around $111.00. Also, they may consider sending active Distemper virus through the mail a bio-hazard. Their list of prohibited or restricted items to that country is pretty extensive and open to pretty broad interpretation. Uh...I think I'll pass on sending it there, LOL. I'll keep checking with US university vet schools. Maybe Auburn does it (in Alabama).

http://Giftbearer.etsy.com/

A Little Panic For A Moment but We're Ready

This afternoon I was tying up alot of loose ends and taking more pictures of Carmella when I decided it might be educational to show on my blog what NDV looks like, so I opened my refrigerator and held it up to the light and took a picture of that and another of the dillutant that goes with it.

Everything was going smoothly when I got down to cropping and editing my pictures and when I came to that one as I cropped it and showed it to "fit on screen" I saw the magnified tiny lettering below the title and it said B1, not LaSota strain. I freaked out because this was why the procedure was rescheduled the first time, thinking that would not work, but this time it was too late.

I rushed around writing e-mails to Dr. Sears and Dr. Norwood in a panic asking if they knew whether this strain would do the same job or whether it would hurt her if it was not LaSota strain. Being around 6:30 pm Dr. Norwood was already gone and I figured I may or may not hear from Dr. Sears in time unless he checks his e-mail in the evening. I waited until around 9:00 pm and kept checking and since tomorrow when I got up would probably really be the crack of dawn for him I figured I better call him.

He answered the phone and I told him the predicament. Luckily he said it would still work and that as long as it did not have other viruses mixed with it there would be no risk of a reaction. I took a magnifyer and looked at the little bottle very carefully. There were no other names on it, so we should be OK.

Dr. Sears told me that we should not expect the fast kind of recovery that we saw in the body to take place in the CNS, and that for the kinds of symptoms due to demyelination that Carmella has we should not expect to see noticeable improvement for a minimum of 4-6 months. He said that's how long it takes for the regeneration of myelin and new pathways to be created via stem cells. This in and of itself is exciting because in documents written earlier he is conservative on the prospect of regeneration but focused more on the heading-off of further damage, although it is alluded to in certain paragraphs.

He asked me to stay in touch and I said I would. I was too nervous to stay on the phone for very long.

As an aside; it is uncanny that the theme of regeneration keeps showing up in my life.

Both Carmella and I have been nervous as hell this evening. Everytime I go into the kitchen she wants to chew on me. I tried getting her to eat as much as she could earlier because after 10:00 pm she is not supposed to eat anything and she can just have a little water. I need to take her outside on a leash tonight before I got to bed and in the morning because she will eat anything she can get off the ground, even sticks or dirt if I don't stop her.

Tonight I put together a folder with her medical records, the protocol procedure, and other related papers and took out all the stuff from it that would not be pertinent.

Watching the news coverage of the gas shortage I am still a little nervous about taking a taxi in the morning, as the forecast is that lines are shorter but many stations are still running out. I hope there are enough drivers working tomorrow so that they are not too backed up. I plan to call at 7:00 (two hours before we need to be there) just in case.

I also wish that a friend could sit with me while I'm waiting in the waitingroom to see how the surgery comes out. It feels alot like when my son was in the hospital being evaluated for brain surgery. I was pretty much handling it alone.

Well pretty soon the hard part will be over, the last shreds of the virus will be gone, and Carmella will be out of the woods. I'll be glad when she is home, safe and sound.

http://Giftbearer.etsy.com