Update

Haven't been here for a while, thought I should update.

I was diagnosed with late stage neurological Lyme disease and Lyme arthritis in August 2012, put on 2-4 antibiotics, and went downhill.  I ended the antibiotics in Feb. 2104, after aprox. 1.5 years.

I have been, largely, offline for the last 2 years.

Some reflections.  I am very grateful.  I am grateful to live in one of the 6 states that allow for long term antibiotic therapy for Lyme disease.  I am grateful that I had a Lyme-literate medical doctor that was covered by insurance.  I am grateful that I had insurance that covered the treatment.  And I think we gave it a fair try.  However, antibiotic (and herbal) therapy did not work for me - I got worse.

In my time online, I noticed that while about 1/3 of the people with Lyme improve on antibiotic treatment, the other 2/3's struggles.  I noticed, 1/3 went up and down on the treatment...and 1/3, like me, got significantly worse on treatment.  In my time online, I tried to go to bat for the third of us who got worse...but I found that the Lyme disease community's emotions were just so raw, that as intelligent as people were...they were years before being ready to talk plainly about Lyme disease.  I was disappointed in the fear mongering...and in the massively expensive treatments that people felt you must have or die (especially since my young adult sick kids would never be able to afford it).  I left. 

I still ask the open question...maybe Lyme is NOT a bacteria?  I figure Lyme is a living thing, and as such, *something* will kill it in all people (not a popular point of view, yet logical nonetheless).  Maybe the third that get worse on treatment have autoimmune conditions?

Perhaps the most pointed question I have is this...just because my blood shows antibodies to Lyme, that may not necessarily mean that I have an active infection of Lyme.  Incidentally, my blood shows antibodies to all kinds of things I have had in the past...and I am sure many other people's do too.

It took until April 2014 (2 months after stopping the antibiotics) for all the horrible movements to stop...and I did really good for a while. I was exercising, walking, doing yoga, eating well...and then crashed.  I still have ups and downs.  That said, I no longer feel like I am dying.  Some would say I still had Lyme (I might have thought the same listening to another's story), as grateful as I am to have been afforded what I consider the best of the best treatment...I am equally grateful to be off it.  I do not think I have Lyme...or, if I had, that it became autoimmune. 

In the last 2 years, I stopped focusing on my illness.  I no longer need a name for it (would like a name, but don't need it).  Instead, I turn my attention to the warmth of the sun on my face...the laugh of my grandbaby, and the beauty of the people and world around me...and I have been much better off for it.  I have a new doctor, she is just as great...and I remain grateful. 

Meds I am taking:
Thyroid T3
Baclofen (for tightness/stiffening)
Cortef (yes, an immune suppressant...my chronic inflammation has been going down)
Taurine (an amino acid I don't seem to make well)
Probiotics (not digesting most foods)
Digestive Enzymes (not digesting most foods)
I have been gluten free for a while, but am going grain free.

Best of luck to everyone on their journeys to reclaim their health.

To Die A Little Inside...

What many don’t see when they meet me or read my writing is that I am very much alone in this Lyme Journey and am struggling just to survive…and that it is neither an easy existence nor easy to choose between necessities like food or supplements/herbs/alternative treatments/alternative doctors that others are doing since I cannot afford both…and I die a little inside each time they talk about these things like it is “the only way”...like we “have-to” do these things if we ever hope to heal…and I leave those conversations with a deep and growing feeling inside like healing or wellness for me is hopelessly out of my reach.  It is difficult to make that ok and to silence that inside me...but I must.  I know that that is not what they mean, or for this to be what people take away from it when they share like that…and I strongly suspect that they are completely unaware of how it affects a number of fellow struggling Lymies who likewise cannot afford all those things, or just how deeply it hurts that they make us feel like these things are "absolutely necessary" (i.e. like you will "never heal" if you don’t go to an expensive cash-pay Lyme-Literate Medical Doctor aka LLMD).  As is my heart, I am compassionate and appreciate what I think they are meaning which I believe is to be "helpful," but that doesn’t stop that little part of me from dying inside and grieving the life that I will lose because I don’t have that kind of money and how out of reach they make my healing seem.  I realize that they do not know this and I have deep love and appreciation that they are trying to help.  When it is too much and I cannot silence my grief I redirect it into researching, to trying to pick apart what is truly necessary from all that is not...and when I discover…just that knowing for myself that I really don’t have to buy this something or do that something in order to heal it gives me some hope that even I (and you) can heal…which allows me to remain optimistic that we will find a cure...which very well may be my only way out of Lyme Land.

The Season of Change

As life moved through autumn and through the first few snows of winter, into the holiday season changes were in store and at long last I woke from the dark season of sleep.  Having doubled my thyroid dose it brought my pain levels back into tolerable range (8-9 on the scale of 1-10) which, for me, was like heaven, and I began sleeping less…and realized in hindsight that the sleeping was due to not having enough physical strength to cope with the intensity of the pain.  Overjoyed by the awakening, I had barely begun to wrap my head around finally being able to be a part of life again which still seemed oddly strange and I removed from it, and it was at this time when I also started seeing success in my antibiotic treatment.  Nothing could have renewed my faith in this journey, in my doctor, and in this path, more than this, albeit momentary, breakthrough in my health.  It was as if the whole of my being, the deeper part of me that had still slumbered waiting its time, was waking and coming back to life…like the tiny blades of grass that come through the ground in the spring after the long winter, life was upon me again…and I alive with it.

 

On reflection over the last few months, I realized that I had had two other momentary breakthroughs in my health, lasting only a day or two, however these had come when cognitively I had been doing so poorly that I had forgotten to take them…and so I had believed that my momentary improvements were due to the absence of the antibiotics as opposed to because of them, or because they were working, which served only to discourage me and make me question the treatment path I had chosen.  The third breakthrough, however, came at a time when I had been dutifully consistent about taking them and if that wasn’t enough for me to see, also for the first time during this breakthrough, I was doing better than I had been before I was diagnosed with Late Stage Neurological Lyme Disease.  This gave me great confidence in the treatment protocol my doctor had designed and I knew it was working.  And as if to confirm matters, there was a fourth breakthrough, although also short (2 days), it was even better than the third.  I was thrilled, and filled with hope…and secure in the knowledge that my doctor and I were on the right path.

 

About this time I began a new medicine, Cholestyramine, or CSM for short.  It is a horrible powder that forms globs and is a challenge for anyone, like me, with a rather squeamish palate, to get down…and it would make me so sick after taking it that I would seriously question in the hours that followed if my body would continue to support life.  Each time that I would take it, my throat would feel thick, my breathing would get loud, my head would feel thick and fuzzy like a pressure was upon it, and I was couched in utter exhaustion just trying to breathe and stay existing.  This is how the hours followed each time after taking it.  Thinking that it wasn’t helping, I stopped taking it for a few days and began to get worse.  As I began getting worse, I realized in retrospect that this fifth breakthrough had lasted around a week…but, with my Lyme-brain and all, I hadn’t quite made the connection that it was the CSM that had something to do with that.

 

It is impossible for any of us to know just how deeply we touch or impact another’s life, however, it was right about this time that I saw the home movie about a woman named, Christa, and her journey with Lyme which would end up having a profound impact on my life.  She was very sick, and like me seemed to be being made worse with treatment, and in the end what turned it around for her was this powder, the CSM.  So, inspired and encouraged by this was I, that I began taking it again…and two great things happened.  I realized that although I could only manage it once a day, it was responsible for giving me back much of my brain in the afternoon which allowed me for the first time since this all began to continue to try to sort out this thing called Lyme.  The other thing it did was to raise my body temperature back to normal…and for the first time since treatment had begun 4-5 months ago, I was having what seemed like the true herx reaction.  I was achy all over and sweaty…and I was overjoyed!  Whatever the CSM was doing it was finally letting the antibiotics really work…and I just knew that I would get well…that it would take a long time, longer than I had originally anticipated, but I knew that I would recover…and there was strength in that knowing that I would later use to get me through the more challenging times that I would face in the future. 

 

Also during this time, I started physical therapy at the Courage Center in their heated pool.  Their philosophy is different from other forms of physical therapy.  The other kinds of physical therapy, it would seem, had been negatively impacted by insurance and regulations that it amounts to little more than showing you some exercises and then casting you away…which always hurts a person when they do that and leaves one devastated by the implication and impact that this casting away has on one’s recovery…because basically it means that recovery stops there.  Each time my mom came home from the hospital they would do this to her, show her a few exercises, and then drop her…never did she get back to how she was before she had gone into the hospital.  And yet, at the Courage Center it is different, their goal is to help you become better than you were, to become more able whatever that means for you.  They still have to show the insurance company that you are improving, but make good arguments for your continued participation as so far I have had two months of physical therapy.  Plus, the heated pool is the greatest thing to someone in pain because it takes the pressure of gravity off which lessens the pain and allows you to do more than you would be able to do out of the water.  And I was blessed with two great physical therapists who encouraged me to keep going even when my health would decline, and who gave me access to the road of recovery.  And I clung to that road with everything in me…after all these years, I could now see the way, it was there, I could do it, and I wasn’t going to let go. 

 

This feeling of determination was contagious, it spread to every other area of my life as well…and everything became like the pool at the Courage Center to me.

 

In the pool at the Courage Center, among other things, I walk laps…forwards, backwards, and sideways.  Always the water causes a resistance, pulling against my legs, making me struggle for it.  In addition, my body conspires against me as I have to each day figure anew how to move my legs the way that they are suppose to go.  And in the random few moments that my brain sputters to life, I reflect and wonder how it is that something that must look so simple to the casual observer is actually one of the most difficult things I do.  The amount of mental effort that goes into telling my legs to move is exhausting mentally…and always there is the resistance of the water.  I have chosen to fight against the resistance, to gain my life back…as if my life is held within the thrust of me against the water.  And each day that I make my way across the pool, every step I am encouraged by myself…as I figure, every step brings me a step closer to the day that I can again walk my dog…because once I can do that, once I am there, the only thing between me and my recovery is me…and that I can manage…and I look forward to that day as a child looks forward to Christmas morning.

 

When the window of the fifth breakthrough began to close, as it always is when these windows lose, it is a challenge to not sink into the hopelessness and depression that surround those with chronic illness.  The first day is not so hard because the good times are still fresh in your memory…and you use that memory to encourage yourself.  You remind yourself that Lyme goes in cycles and that this too will pass.  It is the second day that I find the hardest, at this point you have discovered that symptoms are worse than before and an element of fear takes hold as you cannot help but wonder how you will manage if it gets any worse…even though by now you know you will always find a way because you always have.  By day three, you are through the worst of it and have forgotten just how good it had been, and you have developed a level of familiarity and comfort with things just being what they are.  Now is the time, on the fourth day, that your being quiets and you return to that part of you deep inside…that quiet determination that will see you through this time.  No one sees this.  No one knows what reserves you had to call upon.  No one knows what you have to overcome inside.  But that is ok.  Maybe it is even better like that.  I think of the hopelessness that surrounds my situation like the water, and I trudge through it with the same determination as I do in the pool.  The water may buffer against my legs…but it can not be where my legs are...nor can feelings of hopelessness be where my focus on my recovery is.

 

With the dawn of the new year my doctor changed my antibiotics to Clindamyacin and Cipro…and she did so with such kindness and grace, preparing me ahead of time, so when the time came to make the change I was looking forward to it…even though I appreciated the previous ones and always tend to grieve the closing of windows of good things…I was ready.  The change was neither as difficult as I had anticipated nor as easy.  After we got both going, I began throwing one up...and my neurological symptoms came back with a vengeance and new ones appeared.  I think of the medication changes like the water…it can buffer against me, yet still I persist with the quiet determination. 

 

Research on these two antibiotics revealed that they are famous for getting deep into tissues where Lyme is known to hide, including in one’s tendons and bones…and as I read this my love and appreciation for my doctor deepened.  She is so gracefully humble, but she is just brilliant.  I have no idea how I managed to land in her hands, but I am ever so grateful that I did.  That said, neither one was very good at crossing the blood brain barrier which I suspect had a lot to do with my worsening neurological symptoms.  Finding out that the Buhner Protocol herbs do, in fact, cross the blood brain barrier I made the leap and ordered them…and as I did my concern about my doctor choosing ones that did not melted as I realized that she probably thought I was already on the herbs as I had asked her about it ages before.

 

So it is here that I enter the new chapter of spring.

 

Late Winter 2012-Early 2013

The Season of Sleep

The last half of summer and the autumn of 2012 passed by as if in one long dream that I could never seem to fully wake from. Mostly couch bound…my body, in so much pain, was exhausted…with a new level of exhaustion I had not known before (with every level being one where I question the body’s ability to survive such a state, only to be succeeded by a deeper and more profound level of exhaustion...apparently the body survives). It wasn’t the light napping I had done in the weeks before leading up to this, but deep, night-like sleeps that I only half-roused from periodically to answer nature’s call or let the dog out or tend to my mom. As I reflect back on that time, I think perhaps that the sleep was a bit of a gift that I like to think of as a “saving grace”…that keeps one from fully realizing just how bad things truly are…or that we look back on with a “thank you” in our hearts for having been spared the details.

 

In the mornings it was difficult to get upright and my feet and legs hurt so much that walking was simply not possible. So, with what I am sure was some beauty and grace - not, I would roll out of bed onto the floor and crawl, both wrists and knees screaming, to the toilet. Mostly, thanks to the disease and its attack on the brain, I was pretty mindless about the whole thing…this is just what I did…and I did it without any thought. In reflecting back as I write this, I chuckle a little inside and think to myself, “but this is just exactly what the spiritual community lived for…achieving states of no-thought. Although, I bet that this wasn’t exactly what they had in mind,” however, either way I had achieved it for all that was worth…which did not seem like much...something akin to the let down in the Cracker Jack box as a kid when you were hoping for the ring with the secret compartment like the TV kept mentioning and instead got some fake tattoo that you put on with water.

 

However, on those rare mornings that I had a few brain cells firing, “good days” as others might call them, I would weep at my plight. Life just seemed so impossibly out of reach. Times like those, all the platitudes and cute little sayings seemed hopelessly lacking. And yet, every night, before drifting off…I would be the friend to myself that I so needed, and whisper aloud…“we will try again tomorrow.” And in a strange way, it was almost as satisfying as if someone else had said it.

 

Sometimes I cried because with just a little help I knew I could make it…and, again thanks to the brain dysfunction, I had no idea how to go about getting the help that I so desperately needed...much less how to ask for it because for whatever (idiotic as it seemed to me now) reason, I had spent my previous life being independent. There was a more aggressive treatment, but was told it would make me worse before getting better and without help (since I was already barely functional) I had no choice but to pass on the treatment. And this burned in me for I knew, on some level, that passing on the treatment meant that there was a chance that I may never recover…and the life I dreamed (mango trees and all the mangos I could eat to eat for breakfast…and health) would always only ever be that, a dream. Dark moments like this came over me like a cloud. In desperate attempts to restore optimism, I replaced it with a more immediate image that I could hold onto, “just let me live one day longer than my mom,” was my ever present plea. It felt to me as if I was in some strange metaphorical marathon-esc race with my mom, and I was trying with all that was within me to stay just one step ahead of her health-wise…that I could live out my promise to help her with her last wish, to remain in her home.

 

Caring for my mom was another one of those saving graces, it gave my life purpose…it made me get up each day, it is what kept me taking the countless numbers of pills that made me sick, it is what made me willing to endure the pain of eating…and it gave me the most important thing, for in times like these you find out what is truly important, something outside of myself to live for. Caring for my mom has been the absolute highest expression of love I have ever experienced and I felt blessed beyond measure to be party to and witness of it occurring…and so wonderful as to override any difficulties and challenges of the day to day tasks, and in the most wondrous way sustained itself...it was to my soul something to behold, like a seeing a mountain so beautiful that you never want to take your eyes off it. Over the years, using that as my model, I had learned to care for myself in the same loving way as I cared for my mom. And it was in this way that summer passed and slipped into fall and fall slipped winter.

 

Late Summer/Autumn 2012