Pushing the Energy Envelope

"There is a view among exercise psychologists known as the “energy envelope theory”. Simply stated, each individual has an amount of energy perceived to be available to him/her at any point in time, and if the individual expends only as much energy as they perceive they have available, they will remain in their energy envelope. If they expend more energy then they perceive they have available, then overexertion can lead to worsening symptoms".

I recently read the book “Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease” by Richard I. Horowitz, MD. The author is a board-certified MD specializing in Internal Medicine. He and his wife founded the Hudson Valley Healing Arts Center in Hyde Park, New York, which has treated over 12,000 patients for tick-borne diseases over the past twenty-six years. Dr. Horowitz is known for his pioneering work with Lyme disease and is recognized to be one of the country's foremost experts on chronic illness.

There are many instances throughout this blog where I have admitted that I tend to over do it on the days I am feeling well, which leads to exhaustion, heightened symptoms and me having to sleep a lot. My doctor must be tired of constantly having to remind  me that I don't have any energy reserves and even if I am feeling well I still need to rest. Coincidentally within the same paragraph I quoted above from the book, Dr. Horowitz explains how Lyme patients ignore their basic body signals when they start having good days and then over do it and crash and end up in bed for a couple of days. I am diligently working on slowing myself down and building up stamina while staying within my energy reserve. However, I have spent many years overexerting myself in all aspects of life, so this part of my Lyme recovery is still a major work in progress. 

The book was eye opening to say the least. I learned a lot about Lyme disease and other chronic illnesses and while I may have even more concern now about my health than I did before I picked up the book (I didn't even know that was possible), I am glad that I read it. Environmental toxins, hormone imbalances and sleep patterns are just a few things that can affect Lyme treatment. Viral infections that a Lyme patient doesn't realize they are infected with can also interfere with their treatment, i.e.: Epstein-Barr and West Nile. Lyme Disease can cause autoimmune symptoms even though it is not an autoimmune disease which accounts for the high rate of misdiagnosis. The book is 457 pages so what I mentioned in this brief summary is literally just the tip of the iceberg. The one thing about the book that really bothered me is that Dr. Horowitz made no mention of how costly it is to get treated for Lyme disease and he made it sound like someone could take the information from his book and walk into their physicians office and it would be very easy for them to get proper treatment for Lyme disease. As we all know from reading my blog, that is not the case. But I am not a book critic, so let me get back to talking about me.

Why can't I get better?

This is a good question and not one that is easily answered according to Dr. Horowitz's book. Leading up to Christmas I wrote about the horrible headaches that I was experiencing from what I assumed was consumption of a lot of holiday treats filled with processed sugar. While the lapse in my anti-inflammatory diet played a part in my discomfort the headaches were actually caused by a herx reaction. This herx reaction was quite different than the herx reactions I have experienced thus far in my treatment, so I thought I was just having bad headaches. Click here and here if you need a refresher on herx reactions.

This herx reaction played out over a week and a half. Towards the end of the work day a burning sensation would invade my shoulders, neck and head. The burning sensation would get more intense as the night wore on and pain would start creeping into my neck. I would climb into bed around 7:30 PM because I couldn't function, but would lie there until the early hours of the morning not being able to sleep due to extreme discomfort. I couldn't get comfortable. It hurt to move and it hurt to lie still. In addition to the burning it also felt like someone was trying to cut their way out of my neck from the inside with a rusty sharp instrument. On a few occasions my brain also felt like it was trying to climb out of my head. In the morning when I would get out of bed for work I had a lot of achiness in my neck and shoulders but no sign of the burning and pain. As the week wore on and the pain would come back at night, the burning sensation crept out of my shoulders and neck and was all concentrated in my head. A couple of days after Christmas the pain started radiating into my jaw and it was so intense it felt like all of my teeth were going to fall out. As the night wore on the pain shifted to one tooth and it felt like it had a heartbeat. The most bizarre thing about the tooth pain was that it was in a tooth of mine that I previously had a root canal in so technically it should feel no pain. About eight days into this herx reaction I realized when I was lying in bed that I had an accelerated heart rate. You are probably wondering why it took me so long to realize that. All I can say is that I was dealing with an incredible amount of pain and my heart didn't hurt so I wasn't paying attention to it. After a call to my doctor about my intense burning headaches, tooth/jaw pain and accelerated heart rate I was advised to immediately stop taking one of my antibiotics that I have been on long term for Bartonella and to start taking a different one. In my post from February I discussed how once I was off the antibiotic that caused the herx reaction, I experienced many great things. My brain fog lifted, the night sweats and hot flashes ceased to exist, I wasn't waking up with cramps in my legs in the middle of the night and I no longer felt light-headed when standing up from a seated position. On the flip-side I mentioned that after being off the antibiotic I was having trouble concentrating and I started to experience really bad acne on my face, neck, chest and back.

At the end of February during a doctor's appointment I was telling him about all of the positive things that I experienced with the medication change and he seemed thrilled until I mentioned the horrible acne. I said to him "Now I don't want you to think I am exaggerating about this. I know my face and neck don't look so bad right now, but my back is really bad and it is painful and sometimes it feels warm to the touch". You know it is bad when you lift the bottom of your shirt up to show the doctor your lower back and there is a moment of silence followed by the sound of air being sucked through teeth just as he grabs both sides of your shirt and pulls it back down. There are a few "lucky" folks that got to catch a glimpse of the horror show on my back and ... well... lets say that facial expressions are worth a thousand words! The acne is related to a Bartonella flare up and since the antibiotic I was switched to after being removed from the one that caused the herx reaction clearly wasn't doing a good job of keeping the Bartonella under control, I was told to go back to the other antibiotic but to only take half of the dosage. I was on the half dose for about 4 weeks when I experienced a flare up of inflammation in my neck and shoulders causing me to be extra achy and stiff. The increased inflammation coupled with the fact my acne was still painful and not going away led my doctor to put me back on the full dose of the antibiotic. While the acne looks better than it did a month ago, it is still there and I am now experiencing night sweats and leg cramps again.

Lately I feel like a dog who is erratically chasing its tail. I am stuck in a never ending loop of medication adjustments and symptoms that ebb and flow. While my doctor is tinkering with my medication I have begun a journey down an alternative path. In the coming weeks I look forward to sharing my new experiences with you as I continue my quest to beat my Lyme disease into remission.