Where I've been

If you're wondering why there is such a huge gap between this post and my last one, well, I'm not sure I have a good reason. One answer is that I've actually been feeling a bit better lately. And, I've found that when I'm feeling better, I'd rather enjoy it than talk about being sick. I've found that it is very hard to commit to writing about Lyme unless I'm feeling terrible. I suppose it's easier to talk about the negative because it's all I think about when I'm in it. It's very hard for me to report the positive. It's easier just to move on. I realize, of course, that this leaves readers at quite a disadvantage. I am certainly not inspiring people to keep fighting nor am I giving people hope when I refuse to report progress and, instead, run off to enjoy it.

Warning: Stay away from Dr. William Robbins-Infectious Disease Specialist in Orlando

A few months ago, I had an appointment with Dr. William Robbins. He's an Infectious Disease Specialist practicing in Orlando. Even though I have 2 Lyme literate doctors that I trust, I thought it might be a good idea to get a fresh perspective. Now, before I explain exactly why this was such a bad experience, I want to point out the remarkable timing of my decision to stay neutral, no matter what. Anyone who's been dealing with Lyme for a while knows how tricky it can be to navigate the inevitable ups and downs of the illness and of treatment. For me, this has been especially challenging. I have a tendency to think in very black and white terms about my health. If I wake up feeling especially bad one morning, I get depressed and start to panic at the thought of living the rest of my life that way. And, if I wake up feeling alright, I assume that the worst is over and I start making plans.

I had reason to believe that this appointment would go well because his was one of the only offices in Orlando that was accepting Lyme patients and even the receptionist knew about things like Rocephin dosing. I made an appointment for the next day. And, since there was no time to get my full records, I went to the appointment with only my personal copies of labs, Igenex results, a list of my current medications, and notes I'd been keeping for months.  Based only on this information and my vitals, Dr. Robbins had the following things to say:

1.) Igenex is a "bogus" lab and everything that goes to them comes back positive. And, for that reason, I needed to have the test run through a "real" lab like Labcorp. He ignored the part about how I had already done the test through Labcorp and it came back negative. Funny that my sister's Igenex labs didn't come back all positive and identical to mine. Oh, and none of the dozens of patients I've come in contact with have labs identical to mine. Weird. 

2.) Dr. Kalidas is a quack and he should be reported to the Board of Health. He went on to say that Dr. Kalidas is scamming people out of money and has me on too many medications. This observation was based on, well, who the hell knows? 

3.) I should stop ALL of my medications immediately because they are the cause of all of my symptoms, not the Lyme. He was so wise to insist that I abruptly stop things like antidepressants, Xanax, beta-blockers, and pain medicine.  

In all fairness, at the time I was on about a dozen prescriptions, some regularly and some as needed only. I explained to him that I had been experiencing symptoms for over a decade and had only been on these medications for about 6 months. But, you know, he's the doctor with absolutely no patient history making these observations 5 minutes after he coldly introduced himself without making eye contact. Anyway, back to the nonsense:

4.) I should go see a doctor at the Jemsek Clinic, in North Carolina. He told me that this doctor he was recommending had lost his license over some "misunderstanding" but was now practicing again. What a realistic and reassuring suggestion.

5.) He called the Lyme protocol I was following "bullshit". He told me to "use my head" and think about how little sense it makes to pay out of pocket for treatments in Dr. Kalidas' office. He yelled the word "bullshit" at least a dozen times. 

6.) He had never heard of the Burrascano protocol.

He made repeated attempts at antagonizing and provoking me during the 15 minutes he spent with me. I think he was irritated by my complete lack of emotion. He kept pushing and pushing, trying to get a reaction out of me. But, I stayed completely neutral and responded to every bat-shit crazy thing he said with a simple, uninspired "ok". In fact, I think that accounts for the majority of what I said in the appointment. The entire thing was so over the top ridiculous that I fully expected to find out that I was on Candid Camera. He is a train wreck of a doctor and I would stay far, far away from him if I were you. You've been warned.

I filed an official complaint against him with the Florida Department of Health immediately following that appointment.

How the pain started

My joint pain became a problem in August of 2007. Until that time, I only experienced joint pain if I was on my feet for a while or did too much walking. That changed with the first of a series of pain episodes that started suddenly. I was recovering from an ordinary sinus infection when the unprovoked pain started. At first, it was difficult to describe the pain. Without being able to see it or identify an injury or obvious cause, I did my best to piece together where it was and what it felt like. Not knowing all that much about anatomy, I described it as pain in the lowest joints in my lower back. The pain was constant and unprovoked. When I moved, it felt like pulling at a deep cut. I pictured an open wound in my joints being twisted and stretched. The pain was throbbing, intense, and devastating. I began using ice packs to reduce the inflammation. They provided only temporary and marginal relief. Unfortunately, this was all happening during my first week of class at the local university. I was not yet acquainted with the layout of the school and found myself wandering around this enormous campus lost and in pain. The only way I could stand the 45 minute drive to class was to have ice packs in the car. Half way through my first day of class, I gave up and went home because I simply couldn't walk anymore. 

After about 4 or 5 days of that, the pain spread and became less intense. It spread to the muscles and soft tissue around my lower back, hips, and thighs. The muscles were sore to the touch, as if I had done an intense work out. I couldn't cross my legs or bend down to pick things up. By the end of a week, even the skin over my joints hurt to touch. Even using a washcloth in the shower hurt. The whole episode lasted about a week. Somewhere in that week, my primary care physician, Dr. K, gave me pain pills and put me on an anti-inflammatory diet.

Identifying this experience as an episode was not possible at first. When it began, I had no way of knowing when or if it would stop. It would be months before I got the Lyme diagnosis and learned about the 4 week cycle of symptom flares. I quickly learned that the pain did not go away when the episode was over, it was only reduced. After that first episode, every 4 weeks or so, I would have another. None of the episodes were as intense as the first, but they all followed the exact same pattern. By this time, ice packs, Biofreeze, pain pills, and disabled parking had become a way of life. I found that I could manage the pain between episodes with these coping mechanisms. During an episode, however, there was little I could do to get relief. Each episode that Fall was more depressing than the last as I began to realize that they weren't going to stop. For the first time in my life, I had thoughts of suicide that mirrored the intensity of the pain. By the end of Fall, I was on stronger pain pills and was more frustrated and than ever.

About a week before Christmas, I went to see my other primary care physician, Dr. B. She is an internist and shares a practice with her husband, who is a rheumatologist. I had been to see the rheumatologist that summer, before the episodes began. My lab work and exam showed no evidence of arthritis. Of course, joint pain was only one of many symptoms I was experiencing and the Lyme diagnosis was still more than 6 months away. So, I was on the specialist circuit looking for answers. The rheumatologist told me that there were too many directions to go in and that we would have to wait for me to get worse in order to get more clues. He told me to meditate and then sent me on my way. When I saw Dr. B, she told me a version of the same thing. She half-heartedly diagnosed me with Fibromyalgia and offered to give me cortisone injections for the pain. It turns out that I had correctly identified the location of the joint pain. It was in my sacroiliac joints which are the lowest joints in the lower back. She told me that the injections wouldn't be very painful and should provide almost instant relief. Unfortunately, that was not the case.

The first injection was so intensely painful that I started sobbing immediately and a nurse had to catch me and hold me up. I don't know why I agreed to the second one. Not only did they not provide instant relief, they caused a solid week of the worst pain I've ever experienced. Within an hour, all of the muscles in my back had seized up. My sacroiliac joints were swollen, aching, and throbbing. By that evening, the pain had taken over my entire midsection and I couldn't move. I called Dr. B's office the next morning to ask if this was normal. They were very surprised to hear that I wasn't feeling better and shocked to hear that I felt worse. They told me to use ice packs and call back in 2 days if the pain didn't improve. Nothing helped the pain. No amount of pain pills, ice packs, or biofreeze helped. It felt like my joints were full of shards of glass. Sitting was impossible and laying down was worse. Because these joints are so central, you simply cannot move without using, or agitating, them. The only way I could get even the slightest bit of relief was to stand up or pace around. Of course, I could only do this for a few minutes at a time because I was so fatigued and because it aggravated my other joints. Even when I tried not to move at all, there was still a sensation of burning and stinging. I can't describe the devastation. To say I was suicidal is an incredible understatement. I was certain I was going to have to kill myself. It was not worth living like that and I was starting to make plans. It was the worst thing that had ever happened to me.

After a week of that, I somehow managed to drive myself down to Dr. B's office and beg for help. I could barely move and driving caused excruciating pain. I needed immediate relief and I decided I wouldn't leave until I got it. I expected to leave the office with even stronger pain pills but instead was given a sample of Lyrica. I was furious because the bottle said it could take up to a week to work. I did not have a week. I took the first dose as soon as I got home. Except for making me feel drowsy, it didn't do anything. So, I went about my day pacing and crying. As I said before, sitting was nearly impossible. I couldn't stand the pain of settling all the way into the chair, so I had to hold myself up with my arms. After a few minutes, however, my arms were weak and shaking and I'd have to change positions. Later that night, I took the second dose of Lyrica. About a half an hour later, I felt this bizarre sensation in my joints. It felt like tingling, the way hydrogen peroxide feels on a new cut. Then, suddenly, the pain stopped. Just like that. Like magic. One minute I was shaking and crying and struggling to hold myself up and the next it was over. I sank into a chair for the first time in a week. I stood up and walked around. It didn't seem real. I tried lying down. I could do anything. I was in disbelief. I was so overwhelmed and relieved that I started crying. It was finally over.

I later learned that Lyrica is the only medication that is FDA approved to treat Fibromyalgia. It's also used to help relieve nerve pain, especially in diabetics. I'm not sure exactly how or why it worked. The injections definitely irritated nerves in my SI joints as well as the nerves that run down the back of my thighs. So, that part makes sense. But, how it helped the rest of pain, I just don't know. But, I really don't care. All I know is it worked. I continued taking it for the next few weeks and finished the sample bottle. After that, I didn't need it anymore. Things went back to normal. The only permanent damage seemed to be nerve related.

The following week, Dr. B ordered x rays of my back. The x rays showed muscle spasms but nothing that indicated that an MRI would be necessary. Again, this was all before the Lyme diagnosis and definitely before the pain moved to my hips and became completely debilitating. If I knew then what I know now, I would have insisted on an MRI. I would have demanded that someone look at the problem instead of sitting back and watching it get worse.

No one really seems to know why I had such a bad reaction to the cortisone injections. I did some research and found information on how cortisone can crystalize in the joints of Lyme patients. This seems consistent with my description of feeling like there was glass in my joints. Whatever caused it, it was enough to finally convince me to pay the $400 out of pocket to get the Lyme test through Igenex. Dr. B agreed that this was a good idea. She told me she was out of ideas and that I should pursue Lyme with Dr. K. And that's what I did.

Attempting to Stay Hydrated

These days everyone knows how important it is to stay hydrated. So, instead of giving a lecture on the virtues of getting your 8 glasses of water a day, I'm going to explain how I get them. In treating Lyme it is especially important to stay hydrated because doing so can really take the edge off some of the symptoms. In my case, staying hydrated keeps my blood pressure from getting too low, helps regulate my heart rate and control tachycardia, and makes getting IVs much faster and easier. In an attempt to limit trips to the kitchen, I've come up with a system or routine. Most days, I'm in too much pain to walk comfortably from my bedroom to the kitchen but I go through water so quickly that I find myself having to get up all the time. Now, I have a rotation of two glasses and two bottles. During the day, I fill one glass and both bottles every time I go to the kitchen. Not only is water pretty much the only thing I drink all day, but I take so many pills throughout the day that it's become necessary to keep lots of it around. So, even if I wasn't actively trying to drink plenty of water, I think it would just happen as a natural consequence of taking 30 or so pills a day. I can't drink ice water because my teeth are too sensitive so I drink only cool water from the glass. The nice thing about bottles is that they can only get so cold then they go back to room temperature the longer they sit out. The bottles are especially useful  for when the glass has been sitting out too long, like during a nap or after 12 or 14 hours of sleep. Also, having bottles of water and that extra glass around at all times makes it convenient to make my Parsley and Burbur detox tonics throughout the day. Before bed, one of the bottles goes into the refrigerator so I can grab it quickly on my way out the door to whatever appointment I have that day. As you will learn, I do actually have appointments every single day. I realize that none of this is rocket science. But, when pain rules your life and every step you take has to be planned, getting a water routine down becomes important. I realize that this may not be especially interesting so I hope that it is at least useful.

Introduction

Welcome to The Lyme Light. It is my intention to offer insight and support to fellow Late-Stage Lyme Disease, Dysautonomia and Chronic Illness sufferers. I hope to record, organize, and present all of my experiences in living with and treating these diseases. It's difficult to know where to begin. Should I start by defining Lyme Disease, its symptoms, stages, diagnosis, and treatment? Or, should I dive right in and tell my story starting with today? However I begin, I plan to cover these and many other topics.

I'd like to see this blog grow into a collection of angles that comprise a total picture of life with a chronic illness. I want to present current and accurate disease and treatment information. I want to record my experiences and treatment. I want to offer tips I've picked up along the way to make this process as easy and comfortable as possible. I want to present an honest account of chronic illness and how managing it has become my entire life.

I will not hold anything back. I intend to discuss every last hideous detail. As an intensely private person, this commitment may prove harder to keep than I'm anticipating. My daily journal posts will likely be redundant and depressing and agonizingly full of minutiae. I won't pretend for a moment that this blog is meant to be an entirely selfless resource for fellow sufferers. Far from it. This is as much a self-indulgent compulsion as it is any of the above mentioned.

What you won't find here is arbitrary hope or abbreviations. If I'm having a particularly bad day, I will discuss it and leave it at that. I will not punctuate my description with a positive statement about hope and keeping a positive attitude. The relationships between hope, expectations, and compliance will be the topic of many, many posts to come. I will not abbreviate the names of medications and infections. If I say that I took 100 mg of Doxycycline today, you will see the word 'doxycycline' not 'doxy'. If I discuss the common co-infection Babesia, you will see the word 'babesia' not 'babs'. This, I imagine, will be a cumbersome task. This may seem unimportant or unnecessary to you. I think it simply makes for better reading.