31 July 2011

Resenting Lyme

Lyme is a roller coaster ride. If anyone tells you differently they are fooling themselves and you. It is a roller coaster ride of waxing and waning- not just in symptoms but in emotions as well. These yoyoing emotions also are not just for the one suffering from the disease, but for their caregivers too.

Though I know people who have had Lyme or who presently do, I was never right there in their daily life and struggles to experience any of this first hand. It's all especially hard if the individual with the disease also happens to be one that you rely upon- like a service animal.

I'm no stranger to chronic health difficulties- not for myself and not for my service dogs. That said, I have grown accustom to being able to rely upon Thane as a *healthier* service dog- to help me at home from retrieves, to door tugs, and  to nudging doors open or closed, to turning out the light, to helping me undress. I have become even more accustom to him in public though- his guide work impeccable, his boredom games something that has made me grow as a trainer and handler- but above all I never felt so resentful about anything, not even in Met's life. Don't get me wrong I  DO NOT resent Thane, it's the Lyme Borreliosis spirochetes that has my focus of resentment for all its taken from us.

I love Thane with all my heart. It hurts though deep in my soul that I can not snap my fingers and return him to health. Though Thane is doing better and needs his exercise and even outings, he is not the dependable perfection in guiding and decision-making I had come to expect. Now the mini guide has become a *must have* tool for not just street crossings where it has been invaluable, but to the entire trek we make from the time we leave our walkway to the time we enter our apartment on the return. This is sad to me. I feel almost lost in a maze by what the disease has done; has taken from us.

There are things that just impact our work. I want to have the memories in real life again and yet I have to wonder when, if ever, that will happen again.

When Thane is given drugs, Thane is different. I never noticed it when he was given antibiotics before so I did not expect it now. That said, his antibiotics are not the only new thing he is taking- he has been on milk thistle twice a day and had Denosyl added a couple of days ago.

Border Collies or at least my Border Collies have needed to keep to routine. If Met missed more than two or three days of walks or outings, it was as though I was working a green dog until he got settled into routine again. Thane has not been quite as bad as that, but still a week seems to be his top before I feel like I have a green dog at my side again. When you add drugs to the mix and up the ante from a week to nearly a month with a dog recovering from the implications of a severe drug reaction and a history of  weak blood brain barrier symptoms- my gosh!

Thane has always had a specific type of response to chemical drugs like Capstar. It's bizarre, but he is less clear headed and has this absolute necessity to follow the sidewalk or floor path edge. Its not just walking on the edge of the sidewalk or along a wall, but an actual weaving aong the sidewalk edge, trees, obstacles etc. I feel like I am doing weave poles when these reactions hit. When he needs Capstar, it's short lived and followed by two or three doses of milk thistle since weak blood brain barrier symptoms can merely be due to a slower drug clearance. The key here is that it is short lived because it is not needed every single day.

Right now I have no idea what the trigger really is for his reaction which appears magnified at least four times that of how he responds on Capstar. It could be the amoxicillin, it could be the milk thistle, it could be the Denosyl, or it could be non-med or supplement based and be tripett or liver clearance for everything due to his liver involvement that followed the use of Doxycycline, or an unrelated issue altogether that just becomes apparent when drugs or less tolerated supplements are in use, or a symptom of the disease itself  (hard to accept that latter possibility though).

It's understandable that I should be frustrated right now, but resentful- I can't get my head around this. That tick did not know it was sick It did not necessarily do this to us on purpose other than taking a blood meal is how it survives, but it happened nonetheless and I am left to work through what emotions I have from one day to the next.

Yesterday I was full of optimism, today I just want whoever left me with a faulty replica of Thane, to return the original- it's not funny any more!

30 July 2011

Finding Peace

Life has been tumultuous at best since that day back on June 25th when Thane's labs were faxed to me confirming that he indeed had Lyme Disease. I struggled with the diagnosis. With my good friend Sharon at After Gadget blog living with chronic Lyme Disease, I knew all too well how devastating a disease it can be. As a friend from a distance away, I could only imagine how much worse the struggle really was for her. Then Lyme became, not just Sharon's daily struggle, but mine as well.

I was grateful in a sense to finally have a diagnosis for Thane, but at the same time petrified for what may come about. When Thane collapsed pre-meds though is when the nightmare as I have come to call Lyme Disease, really began. You all know the rest of that story- from his collapse, to the meds, to the reaction, to the new drug that is finally helping him.

Over the last few days, I have experienced a *sort of* renewal in Thane. Don't worry, I am not deceiving myself. I know we have a long journey back. That said, I began to realize that this journey for Thane and I post diagnosis isn't that much different than it was pre-diagnosis. I mean sure, its entered a point in which daily treatment is essential. I have also come to think about how he is doing before deciding if we can do something. It is no different to me though than working with my previous service dog Chimette. Well, I take that back because in the early stages of Met's disease, I had very little opportunities to discover real bone fide answers. A lot has changed in the decade between my boys.

There is a change in me too- even a change from two weeks ago to now. I have in a sense taken the bull by the horns and chosen within myself to not let it win in the sense of the emotional and stress filled roller coaster I lived on with Met. Don't get me wrong here. There are the moments when you wonder why this happened AGAIN. Why you have not had the luxury so many have of living and working with a perfectly healthy service dog. Truth be told, I really wonder how healthy all those healthy dogs really are.

Knowledge is power though. I think for me, with my mind that just devours the biological information, understanding the disease has been a source of release for me. Of course its easier if I don't think about it all in terms of Thane, but rather thinking about it in the same way I did my anatomy and physiology, geology, or even chemistry (blah) texts as imparting myself with knowledge.

Between Sharon's awesome support and information, including the recommendation for the book Healing Lyme, I have been able to impart the knowledge I craved, to find a sort of peace within myself, for this new *Adventure* if you will. Its not the kind of adventure I would choose for us on this beautiful sunny summer day, but it certainly has imparted to me a new perspective about the red and white boy I share my life with now.

I am obviously having one of those optimistic mindset days. Though I know times like today can be fleeting moments in the course of this marathon, I felt it good for you to see all the process we take along our journey *home* .

I guess though the point I am trying to make is that I don't have to let Lyme do to me what vaccinosis did. When I think of what Met and I had before things turned upside down, I sometimes wonder what hampered us from having that through vaccinosis and my MCS. The difference was me, my mindset, and my inability to find peace with the disease. For Thane, I want different. I am setting the goal to find and keep peace with this disease. I know it won't be easy, but I also know that for me the knowledge I have gained in understanding how Lyme Borreliosis spirochetes work is one gigantic step towards some level of peace for me.

Thane has shown me very loud and clearly that he needs his job so nothing will stop us from being the team we have been up until now. Its been a team of Thane guiding the way amongst toppled carts, garbage, uneven sidewalk pathways, unimaginable obstacles, and especially the reckless bicyclists or motorists. Afterall, Thane has had this disease for two years and I did not think then about the big *R* word during any of that time. It'd take a lot for me to have the mindset that only a dog in perfect health can do this job. If I were not more sedentary than most, I might have to consider other options, but I don't- isn't that great!

29 July 2011

A New Day- Another Day Closer

This morning I wanted to try another errand with Thane. We had woke up early (or I should say I had) I convinced Thane to get up, which usually takes a while. While he is waking I begin my second tick check as he lays their limp trying to steal more Z's. I do the best overall checking when I am grooming him and can superficially brush hair one way or another (no skin contact) so I can reach to the skin with my hands to feel for anything odd, but I seem to have learned to take advantage of times when he is much more limp and thus easier to check over. Once I am satisfied that at least primary areas have been checked, I say OK Time to get out of bed. Over he rolls and off the bed he goes in a flash. This morning took a little more convincing to get that *flash*

Convincing myself and him that there was a reason to be up early, we got up and around, medified, fed, even laundry done- harnessed Thane up with cool packs and spares in the cooler just in case. We headed out the door with a package for Auntie Sharon at After Gadget blog. She is going to be my tester to let me know just how well the Tick Key works in comparison to the tool she uses, but I've digressed a bit here.

Yesterday our outing was not quite as successful as I had hoped for. That was my own fault for accidentally feeding Thane something that happened to have a known trigger for his reactivity. Today was a new day and I was hopeful of a better experience. Between the added supplements, the meds, the changes in his diet to accommodate one of the nasty tasting supplements, with a dog with a history of drug, supplement, and food triggers- all bets are pretty much off as to what kind of day we might wind up experiencing.

Today was going to be better. Today we walked to the post office with minimal issues. Thane had remembered the lack of curb cuts at the end of a side street near the college. I forgot of course and overrode his decision one block earlier to take a cross street down to the main road. We managed alright with me telling myself, Listen to Your Dog- he may have Lyme, he may not be his normal self yet, but he knows your town! LOL

There were very few instances until we got to the entrance to the college where Thane was pulling harder into harness. This is often triggered by meds and supplements but can be triggered by how calm I am and by his level of sound reactivity. I decided I would rather work with the instances than put his leader (head halter) on him. As we came up the hill we normally use to reach the exit pathway, Thane did a firm traffic check. I could not for the life of me figure why at first. I reached down and discovered that our winter storms had really played havoc with that side walk. There must have been at least a two inch difference in the two sections of side walk (maybe more). Rather than attempt that and feel the hard impact on my back, we found another way around it.

After that accomplishment, Thane began showing cautiousness. I worked with him the best I could but it was clear he had a discomfort with what had presented itself. There was a huge gathering of a team of bicyclists and when I say team there must have been thirty or more. I'm sure we have encountered them before in town over the months and years we have lived here, but today Thane made it clear he was not too gung-ho about the situation. It was short-lived though and once across the street, I took a few extra moments for composure before heading across one more street and down to the post office.

I got a chance to better evaluate the automatic door buttons for future training, dropped off the package, and came outside for some shade and water. Overall Thane was a far cry from what he was like a week and a half ago where had it not been for the carabiner leash attachment, I could have lost him when he went into such panic and intense reactivity. What he had done, though it needs some fine tuning work, was superb as far as I was concerned at that moment.

I had every intention of taking the bus home with him. That was my goal. It was hot and the distance probably a bit long for a dog who has had musculoskeletal Lyme involvement. When we got to the main street though, Thane got pretty  reactive to some construction going on. I figured we would go down a block and then try and catch the bus from there so we did not have to sit right by the construction waiting to cross the street. Besides some off and on harder pull though, Thane acted like he wanted to walk it so we did. I did not think about the musculoskeletal side of things until after we were home. He has not exhibited any symptoms of that nature since coming home though.

After his routine wet towel wipe down for allergens, a brief check over for ticks (gosh I was tired- I've gotten out of shape these last few weeks), a short rest, and he was nudging his ball at me.

It was so overwhelming to me to come home to our gift from Nutramax. Its not a gift in the sense that I knew it was coming soon, but it is a gift in the sense that they provide these products for IAADP members. The Denosyl alone is close to three hundred dollars of gifted supplementation for Thane's treatment, not to mention the Cosequin they also sent. Some may look at these types of things as automatic benefits owed if they have membership in IAADP. I, on the other hand, look at them for just what they are- a gift that they don't have to give, but for which I am most grateful for.

I am different since Lyme Disease entered our lives. It seems everywhere we go, where there is overgrown plant life, I find myself thinking, I wonder if there are ticks in there, or there, or there. I don't obsess with it, but its something I really never thought about until that day when his labs were faxed to me with a positive titer for Lyme Disease.

Today though was a sign, despite some of the harder pull in harness spikes (some triggered by construction or unexpected occurrences), that life will be back to normal soon. We will probably take it easier tomorrow- maybe a short walk up to our problem tree behind a convenience store that needs some clipper action or something else simple.

One good thing I have noticed today which confirms my suspicions, Thane has not been licking. He has been bored without his walks and job. He has needed more than I could give him while he could not work. Life will be OK again, but I have to be careful to not forget that he does have some limitations right now. I don't want a decision I make to amplify his troubles. I know I have to live with the fact that he has this disease and that I was not proactive enough- but I don't want to live with regrets because I pushed him too far and made things worse.

So far, today, it looks like what we did was OK. Now Auntie Sharon can see if the tick keys I carry everywhere, are worth while or not. smile

Appalling Misinformation on Screening

I follow some blogs on the net that have topics that appeal to me. Most are friends blogs from the service dog community, but I also follow the Dogs Naturally Magazine blog. Usually they have really great incites from the contributors there. Posts from folks such as Catherine O'Driscoll author of What Vets Don't Tell You About Vaccines and Shock to the System.

Imagine my frustration when I read Their piece on Canine Ehrlichiosis which basically says that testing the asymptomatic dog for TBD's is not warranted.

Perhaps if testing was more universally thought of as important in all areas not just endemic ones, we would not have stories like Thane's to write about. Since so many people share the link for this blog in forums where individuals want good hard truths and alternative options, it makes me sick to know that in areas where it truly is warranted to hit a disease hard and fast and hopefully before its hitting multiple systems, people will be listening to more of the propaganda about Lyme that adds to why it so difficult to conquer and as a result is being one of our nations biggest medical hurdles.

In Healing Lyme by Stephen Harrod Buhmer, there is one portion when he talks about its difficulties in the diagnosis and treatment where he compares it to the early years of the AIDS epidemic. I could definitely relate to what he was saying, having had a boyfriend with AIDS from tainted factor VIII during those earlier years, it was as maddening as what I have learned about Lyme- both through vets, this book, and my dear friend Sharon at After Gadget blog who is another example of just how bad Lyme can get if we DON'T SCREEN EVERYONE!

I will test Thane every year when we beat this demon and I will also test any future dog every year. My mind is made up. It is not worth the heart break, the immune dysfunction, the loss of a partner (even temporarily) to a guide dog team. While I get that antibodies could mean a dog has beat the disease and had an effective response, there are other more sophisticated tests like the IDEXX C6 that can be more conclusive about disease versus immune response.

If I had it to do all over again, I'd have listened better to Sharon's insights and tested Thane long before I did. When I think about how many health hurdles we could have avoided by this one simple test it makes it hard to swallow. I will have to take this as a lesson learned from my inaction. Don't let your dog walk in Thane's pawprints because a natural health blog says that screening is not warranted.

28 July 2011

A Small Opportunity to Work Amidst a Diet Blunder

Today was going to be a special day. Our first errand since Thane's drug reaction. Though it was to be something simple in our town, it was still a big deal to me. It also had the added benefit of being a beautiful day with temps actually approaching closer to normal than they have been lately.

I planned this outing carefully or so I thought. I wanted him to get a nice walk but there were hiccups along the way. Most of the hiccups had to do with idiot utility companies and their vehicles blocking access- some so bad that I know it was against the law. I knew I did not have what I needed today to fight with them about moving though so I simply found us another route rather than letting one of us get hit in the process- good thing don't ya think smile

This walk was not going as smoothly as previous walks have gone. I started running off a checklist in my head to see if anything had been amiss in supplements and diet but nothing seemed off to me. After a time, I just put on the leader so I was not in this constant battle with Thane. He seemed to settle down enough when I did that so I made the decision to carry on with my plan. It worked out, but it was tougher than I anticipated as the store chose this time to re-arrange EVERYTHING!

Thane did fairly well, but he is really doing this *follow the edge* routine like he does after Capstar (without having been given Capstar).It's something I can work with using our *straight* command every few minutes but I best get used to it since he will be on these meds for months to come. I will admit after working so much without him lately, I felt very much like I was in training with him- forgetting to use commands and other important details.

Coming home, he was getting into this *race you to the door, mom* mentality and lets just say it wasn't gonna happen. smile I gave him a chance to change his way and then took the scenic route home instead of the short cut. Boy was he pissed though he settled down and walked nice the rest of the way. Perhaps the message was received- ya think?

We had been home for about a half hour when it dawned on me just why things were not as smooth as I had anticipated today. I had forgot that the Duck Tripett has fish in it. Whoops! I made a huge mistake, but thankfully I was giving him half and half of that and the beef formula so it could have been worse. When I recalled my blunder I decided to call this a pretty decent outing all things considered.

I'm still waiting on the Denosyl for Thane's liver. We are eating through the Milk Thistle supply more quickly due to this fact. I'm wishing that the vet could have just given it to us from her supply instead of this long wait. I guess its not really that long, but with his re-test just two weeks away, I really wanted to have that in his sytem and working for a time before the testing. Maybe it'll come tomorrow.

Thane has licked a lot less today. This is really good. It makes me think that his licking is more about boredom than anything else. His chewing has come down immensely since the antibiotics and increased dose of probiotics. This is really nice to see. After reading more in the book Healing Lyme (as I scan it), I am finding more and more things out in regards to symptoms he ahs had over the last almost two years. So much just makes sense now.

Depending on how Thane is doing tomorrow, we may take a nice walk before it gets too hot. Walks are good places to see how he is doing when I have made diet blunders- plus its just nice to get out when its nice and appreciate his improvements.

Tomorrow is another day and another step closer in our marathon towards better times.

27 July 2011

The Meaning Behind, Guiding Through Lyme

I meant to write this first and forgot. I wanted to share why I chose the name I did for this blog- what it means to me.

Guiding Through Lyme has a dual meaning to me. One of course will be the path that Thane's particular course with Lyme takes us in. We've already seen that his course is not going to be a typical one after he reacted to Doxycycline. This is a disease though that will have ups and downs and Thane himself will guide what path we must take.

The second meaning of the blog has to do with our working partnership. It has to do with working as a team while living with chronic Lyme Disease. I've got experience working with a service dog who had chronic health needs already so that won't be new to me. This disease is different and as such I know it is going to govern just how much and what Thane can do for a while, but it will be good for me (and you) for this blog to not be just about the bad days, but that you see the days when Lyme does not feel like it owns us.

I know how bleak it can be, but I also know of those who have triumphed and won so its important to share the wins along the way too. Don't you think? smile

26 July 2011

Answers

There are times when we get answers that resolutions can be swift as a result. When I set my mind on testing Thane for Lyme disease, I thought I was doing it as a *preventative* measure for not leaving stones unturned that could cause problems in the health and longevity of a team, but I certainly was not of the belief that he had it.

At that point, I was being a good owner and handler providing my dog with the very best in prevention and health maintenance. It was not until later that I would remember the strange dark bump on Thane's abdomen that was later replaced with the hive like reaction common in most after a tick has detached.

I pursued testing because of the proactive stand my friend Sharon at the After Gadget blog has held. Through her fight with Lyme and other co-infections as well as Gadget's experience with Lyme, she has done an awesome job in showing us that Lyme is not just a North East/ East coast  thing, but that it can be wherever you live.

It was hard for me to digest when my vet said that Thane's newer symptoms were leading her to believe that TBD (tick borne disease) might actually be his problem, but she continued by saying that our ticks are not generally diseased.

Thane blew that out of the water when his tests came back with a diagnosis of Lyme disease. By the time the drugs were here (needed a compounder) Thane had begun to enter a collapse. I was unaware how bad off he was and as a result we barely made it back home. It was heart-breaking and scarey, but having a friend who knew what I was going through truly made all the difference in how I handled the next week with Thane.

One of the hardest things was to put Thane in his crate and head out with my guide cane and mini-guide to do my shopping errands alone. To say I got a real lesson in just how much Thane does would be a huge understatement. It was not easy, but someone had to get food in our house if we wanted to eat. grin

It's been hard for me to deal with other things too though- summers are when Thane and I head off for adventuring. Its a time of just really trying new things that make me trust in him completely. Its a time when our bond and teamwork are magnified because of the experiences we have together in parts unknown. This year however, between the ridiculous nature of the weather and Thane's health, the furthest we have gone is New Seasons and in doing that trip, we barely made it home.

Summers are my lifeline to surviving the nine to ten months of rain and mud and trials of trying to ride public transit amidst that kind of weather. I rely on the pick-me-up I get from our sun filled days of adventure to carry me through until the next summer surfaces. Now, this year, I'm supplementing with Vitamin D because as much sun as I get when taking Thane busy or for walks when he is able just aint going to cut my needs.

Despite all of this, I felt like I was doing OK. That is until Thane crashed again. Though its turned out alright now, the experience of him reacting to Doxycycline (and me suspecting the drug, but being told to continue its use) will haunt me for a while. Thankfully we saw a specialist the very next day who suspected the same, pulled the drug, and placed him on Amoxicillin instead. I am cautiously optimistic with the path of the past week on this drug.

During the crash Thane experienced, I received some hurtful emails amidst some really supportive ones. You know who you are- the people who carried me through. I can't thank you enough for helping me take a step back from those whose views were essentially that of blame instead of support. You carried me through some of the most tumultuous days I have experienced since the passing of Met. For that I am most grateful.

I know there will be ups and downs along the road back for Thane and I. I also know that Thane is not going to get better in a week or a month- afterall the spirochets have had two years to wreak havoc without being stopped. I am trying not to live with regrets. I can't go back and change that fateful day in June 2009 when I felt a weird bump on Thane and told myself to keep an eye on it. I'd personally never seen what an attached tick looked like on a body part even when I was sighted (though the vet found one on Met when I had him only two weeks, he removed it without me seeing it on him) so blaming myself for this isn't going to help me and it certainly won't help Thane.

On the positive side, I kept looking for answers to his ever changing symptoms from skin and coat, to symptoms that appeared hormonal, to musculoskeletal, to neurological. I am glad that I stuck with it and did not come to a place where I just blew it off because nothing ever panned out. Some people think my search for answers to be a desire to find something wrong. That could not be the furthest thing from the truth. By sticking with it, I found that Thane had his own journey to walk- a journey to teach me and others that Lyme is in fact here in the Pacific NorthWest.