Facebook likes to ask how I am on a seemingly daily basis, if not more.  Today I am tired, achy and happy.  Seems as though one of those things does not belong with the others, but it is possible. I'm tired from working and making the two hour long trip to see the Lyme Whisperer today for my appointment. Achy because I spent a lot of time in the car and because I am herxing. And it turns out I am a bit forgetful because I've eaten my dinner, being cautious not to have any dairy for two hours before dinner.  Only I forgot to take the tetracycline. So now, what do I do? I think given the scenario that skipping tonight's dose is the way to go. Which brings me to :happy.

   I'm happy because today The Lyme Whisperer helped me redefine overwhelmed.  For me, overwhelmed has meant broken-down, crying no more strength to do anything, somebody help me find a way out because I can't see the way myself.  Generally, the solutions are basic: eat something healthy, rest. Take a shower. Sit quietly with a cup of tea. Cuddle with LoraBora. Go for a walk. So when the Lyme Whisperer told me last week over the phone not to take the antibiotic if feeling overwhelmed, I realized in my foggy,achy state that a re-assessment was in order.  

   I have a penchant for pushing through physical pain and fatigue to do my job, meet my home obligations and take care of others. Some days with Lyme, I have all I can do to get myself out the door, with a lunch packed and my teeth brushed. My husband helps me a lot with this. He brings me coffee in bed. Lights a fire in the living room when it's cold and I feel it more than he does. Watches the end of the driveway so I don't back into the path of the on-coming school bus when the banks of snow obscure my vision.  And then I go to work and put my energy into being as present as I can possibly be at work. I worry about the Prior Authorizations I'm not getting done in what I consider to be a timely fashion because there is just too much to do.  I feel guilty because the papers keep piling up and my desk is never clear.  The thought that becoming overwhelmed as I have previously defined it may not be the best definition by which to live my life is now in the forefront. 

  LW agreed that while my definition of overwhelmed was pretty good, he proposed a modification: If I'm having symptoms that feel as if they are too much to manage, then I can skip a dose.  He would prefer that I take it more slowly. The Lyme bugs are not going to become resistant to the antibiotic . My bodymindspirit is not going to become overwrought by "gutting it out." My parent's imparted a very strong work ethic into me, to the point where the lack of self-care has often taken the backseat to the needs of others. Nursing school further re-inforced that one do the job no matter what, that sick people are depending on the nurse and she is the double-check that keeps very human doctors from (hopefully) not making very human errors themselves. I,wanting to be the good, helpful girl that everyone will like because I am so helpful bought it hook, line and sinker. 

   I am relieved that I can be kinder to myself. I am relieved that tonight forgetting to take my antibiotic is a sign of how very tired and foggy I am and that it is appropriate not to take a medication that will make me more foggy and achy in the morning. 

I am happy because someone in authority has given me permission to relax. That pushing harder will not get me better faster and will possibly prolong the process. I am happy that I have come along far enough in my life that I accept this permission.

Blessings abound.

   The tetracycline is working. I take five hundred milligrams, for the most part daily. I say for the most part because as the herxe symptoms increase,i.e., more brain fog, all over aches and pains and stifling fatigue, I start to become overwhelmed. My doc has told me that it's ok to hold the tetracycline at those times. Friday I decided that overwhelmed was a state that didn't necessarily mean crying and totally exhausted. This was after talking with my doc. My practice leader let me leave work an hour early as it was quiet in the office.  I was achy and tired and a little teary, but otherwise ok. 

   Saturday I hurt too much to sit up. Reading was difficult, the sound of music irritating and the only places comfortable were the couch and our bed. I briefly went outside with Lora, ostensibly for play time. She frolicked in the snow with an overly large green and blue hard ball. Me? I leaned on the railing of the entryway. Then I wove my way to the large sugar maple I call Mother. She is big and round with a spreading crown of branches.  She calls me to her when I am aching or tired or , well, many states of being. I spent time leaning against her, my body relaxing into the cold support of a tree in winter. I stayed there a while.  Lora played. I listened to the wind, heard the tree tops brushing the sky.  Then I staggered into the house, more relaxed and ready to lie down.  

  Today I want my Mother. Not the tree, not the woman in the assisted living facility with dementia. Not the paranoid schizophrenic present for most of my life. I wanted "Mumma", the woman on whose lap I could sometimes rest my head. She would stroke my brown hair and I would relax into her touch. Such sweet times. 

  And so I become my own Mumma. I dress in soft and flowing clothing, nothing binding, nothing tight, as this is a day when it hurts to wear clothing.  I surround myself in memories of her soft touch, the songs she would sing at bedtime. I sing to myself. I practice Tonglin, lying in bed, dedicating my suffering to others so that they might find comfort, healing, peace. I cuddle Lora, a living teddy bear. I eat healthy food. I ask for help from my husband so the hurt will not overwhelm me. Most of all, I remember that from this pain, a result of killing Lyme spirochetes, I will come out on the other side of this healthier, more energetic and more myself. 

Blessings abound

Michel wondered what a Lyme Whisperer is. 

 I refer to my Lyme doctor as "The Lyme Whisperer" because Lyme Literate MD's are open to prosecution in this country as they do not treat the patients in their care according to  the Infectious Disease Society of America's standards that " there is no such thing as chronic Lyme." IDSA holds that a three week course of doxcycyline is adequate to eradicate Lyme Disease. The insurance companies use this as a treatment guideline. The CDC has a similiar stance on Lyme treatment.

   Many folks who are treated with a three week course of Doxycycline may feel better in the short term can later on develop symptoms consistent with Lyme Disease. I call my doctor The Lyme Whisperer because he is more knowledgeable about this disease and it's effects. He treats with a series of long-term antibiotics. Treatment takes years. Like a horse whisperer or a dog whisperer, he knows what will make the Lyme respond to treatment. He coaxes the spirochetes to reveal themselves. Lyme spirochetes, the bacteria that cause Lyme, are able to change form and hide from one's immune system. The bacteria can go dormant encasing itself in a cyst and lingering in the system of the host until the environment is ripe and the cyst can open up for the bacteria to reproduce itself. 

  My doc also knows to start with the less potent of the antibiotics to help kill spirochetes and not overwhelm the host. Yes, it is achy and tiring and the brain fog makes me feel stupid sometimes, but the way he titrates the dose over a long period of time according to my response keeps me from being overwhelmed. Several years ago, I was treated with Rifampin for latent Tuberculosis infection. At the time, I did not know I had Lyme disease. It was a four month course of treatment and it knocked me on my ass. I was so tired and in so much pain I could not think straight. I had to take a leave of absence for four months in order to complete treatment- there was no taking a break from treatment and then restarting. It had to be a course of daily treatment for four months. Rifampin not only kills tuberculosis, it also kills the spirochete that causes Lyme. I was having a really bad herxe. I would sleep for fourteen hours and then nap some more in the afternoon.  The Lyme Whisperer increases my medications slowly.  He gathers information about my symptoms and we proceed accordingly. He never insists that I proceed to increase if I am overwhelmed. For this I am grateful. 

I love the fact that even as I sit here resting, I am killing spirochetes. Hooray for me!

I've been taking Tetracycline for ten days.  Things I've noticed: My eyes are more light sensitive. I've taken to wearing my husband's light amber lenses indoors. I've ordered a pair to go over my glasses so I can wear them indoors to cut down on computer glare. I've had to close the curtains in the bedroom to keep it dark enough to sleep, even at night. The light sensitivity is causing headache. I spoke with a friend earlier this morning who had been on The Marshall Protocol for her Lyme Disease. She is stronger and likes to say she is,"in long-term remission" because nobody really knows what happens with Lyme after the long course of antibiotic therapies. She has been on tetracycline and shared her similiar experiences.

I also can't seem to rest in a still state for very long. Today I intended to rest after having a really great and busy day yesterday. I sort of succeeded. I also managed to clean some things in the kitchen, sort more clothes to go to Planet Aid, and relegated my holey socks to the rag bag. I burned two CD's for my sister and put together a care package to ship to Maine. I made my chicken sausage and soy pudding for the week. I cleared off the dining room and threw away some of the detritis that had accumulated. Periodically, I would sit and rest. 

I also feel grouchier at times than usual. Both of my friends who have taken Tetracycline for Lyme Treatment attest that they are crankier (bitchier one said) when taking Tetracycline. And even though they had shared other aspects of their treatment with me and I have watched them struggle with the effects of the medications, I had no idea what they were experiencing. I can more fully appreciate the effort they have put into becoming well and reclaiming their health.

The flip side of the treatment process is that yesterday I felt even better than I had in a long time. A friend and I went shopping in Burlington. We went to four different stores, one of them twice. We had lunch. There was a lot of driving involved. I didn't start to feel foggy until the last two hours of the day.  I was gone from 10:15 in the morning to six that night. I was tuckered out when I came home,but not as badly as I have been in the past. Even though I am ramping up on the tetracycline, I can still feel the improvement from the treatment of the last year. On February 24 it will be the one year anniversary of my first appointment with The Lyme Whisperer. I wonder, should I send him an anniversary card? 

I am grateful to find the improvements treatment has provided and fervently hope this will continue to be true. Blessings abound.

  I saw the Lyme Whisperer this week. Time to proceed to the next phase of antibiotic treatment: Tetracycline.  Tetracycline is an inexpensive antibiotic to manufacture. Being a generic, no one in the pharmaceutical industry is making much money on it. The response of the manufacturer's? They don't make it anymore. In order to obtain Tetracycline for the treatment of Lyme Disease, one must have the prescription filled at a Compounding Pharmacy. Fortunately, there is a very good one not far from me in Rutland, Vermont. It is Wilcox Pharmacy.  So Wednesday morning, LW called a prescription into Wilcox for me for Tetracycline. It arrived in the mail Friday morning. The roads were cleaned up from the pre-Nemo storm precipitation and Erik went to the General Store where our Post Office is situated and retrieved the mailer. I swapped out the Amoxicillin from my pill boxes and poured the Tetracycline. 

 i was trying to post a picture of the General Store and the Post Office, but Xanga will not allow. The links are here and here.

   When starting antibiotic therapy anew, the medication is titrated somewhat slowly so the die-off of the bacteria is not so overwhelming that one can't function as well through the Herxheimer reaction.  Because I work four days a week, my doc decided tp start me off at the lowest dose: two hundred-fifty milligrams twenty to thirty minutes before supper. I am not supposed to have dairy products to eat or drink for two hours before and after the medication. Which for now is quite manageable, but in the future may see me somewhat groggy in the morning without my coffee with cream to awaken me. This is a minor travail if it means I will eventually see an improvement in my energy and other Lyme symptoms. 

   I am excited that I am a bit improved- more than I could imagine, actually.  Excited and filled with trepidation at having the body aches and fatigue and brain fog back stronger. So for now I will need to sleep more, not have much activity outside of working, and probably have to figure out some way to make sure I take the medication at the proper time as I start taking it with more meals. The goal is a total of five hundred milligrams three times a day. The side effects associated with this medication include nausea, gastritis (an inflammation of the stomach) and heartburn. I'm to call if these occur. I pray that they won't. 

    Last night I had my first dose of Tetracycline. Today I am a little muzzy-headed. But considering that I completed and filed the taxes, made a beef stew and washed the bathroom floor, I think I am doing rather well. The Lyme Whisperer said I might not feel much at first and if so, to please call for an increase. The motto here: One must become worse in order to become better.  Kill off the bacteria without killing the host. That would be me. 

Blessings abound