my story, symptoms, thoughts

Repeat Relapses

Being out of treatment, I don’t have things to post that often anymore. Or perhaps I’m just too busy. Having gotten back from my sabbatical I’ve been thrown headlong into a very difficult semester. And when I don’t  feel well I have nothing to fall back on because I have no wiggle room left while doing everything I’ve been asked to do and still sleeping and taking care of myself.

However, Lyme doesn’t pay attention to those things, and so I’ve twice in the last 6 weeks had a week in which I had to step back. The first time I didn’t pay too much attention. It was after a trip, I was fighting a cold, and working hard. No wonder I ran into trouble. On the other hand the symptoms were unusual — tingling in my lower limbs is a new symptom (I think), and while the associated fatigue and shortness of breath when moving about were familiar, the tingling concerned me, especially when it was still going on a few days later. I also realized that when I’m tired like that I have trouble focusing (I see double).

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my story, symptoms

Can’t move jaw, hearing problems

In late August in preparation for classes and a big paper deadline, I slept an average of about 5 and a half hours a night, with interruptions, for a 5 day period. This precipitated the worst downslide I had had yet.

First, starting on 8/27, my jaw pained worsened until I was completely unable to open or close my jaw and my lower jaw was jutting forward so far that my overbite had become an underbite. As it happened, I had scheduled an appointment with both my MD/homeopath (on 8/28) and PCP (on 8/29).  I believed that by now they would surely want to see me again (in the case of the PCP) and might think it was time to take more directed action to address what was wrong (i.e. run tests). The changes in my body were beginning to scare me. Still, I trusted my doctors. My MD/homeopath listened to my symptoms, and then asked me to open my mouth so she could look at my throat (I also had a cold again). She reacted with surprise when I couldn’t.

Second, my hearing had gotten truly bad, something both my husband and I noticed a few days before the doctors visits. Both she and my PCP sort of laughed it off when I reported this, and in fact my PCP said something like “aren’t you a little young to lose your hearing” and did not mention it again.

This should have been a reminder for me — for the second time since I became ill, one of my doctors was surprised to see how strongly my illness was affecting me. Description alone was not getting the message across. The first time (see my Feb 1, 2007 post), the extent of my fatigue was hidden by my daytime energy. The second time, the extent of my frozen jaw was not understood until, in front of the doctor, I could not open my mouth. Both times, even after they saw something closer to the truth, I left the office reassured that things would continued to work with my doctor to address my condition through naturopathic means. The hypothesis was that a combination of mold, lack of sleep and other stressors was acting on my body. I saw my PCP a few days later, and he assured me that my symptoms were most likely caused by a virus and would probably clear  up on their own and suggested I only come back if in a few months I was not better, or if I started to feel significantly worse. Even worse, serious symptoms such as hearing loss seemed to be overlooked if they did not fit the picture of the preferred diagnosis. In all fairness, none of my more serious symptoms were truly debilitating (I was still biking to work most days!) or if they were they cleared up quickly (the jaw was improving 24 hours later, seemingly responding well to the medication I was given, and completely better by 9/2).

Even so, if I could go back in time, it is at this point that I would whisper in my own ear: Your doctors don’t have a true picture of how you feel. They may be overlooking some of your symptoms. They’re investigating the possibility of a serious disease. And you yourself should never just wait out a combination of changes this diverse — hearing loss, frozen jaw, pain, fatigue, immune problems — this is a picture that should be taken seriously. Sadly, I was focused on things that seemed far more important at the time — meeting a paper deadline for a project I cared deeply about, and preparing for a difficult semester in which I would be teaching two classes, one of which was the most time consuming in our department.

my story, symptoms

Stress and little sleep leads to worsening of symptoms

My notes during this period:

May 20th … sore throat.. runny nose developed

May 23rd … lymph nodes very swollen, have been stressed and not sleeping very long because of worries about work and my son. Around now I think my lymph nodes stopped getting better (shrinking) in the morning

May 30th … cold seems to have developed into a sinus infection that lasts until June 3rd.

my story, symptoms

Flu-like symptoms brought on by late nights

Right after the fatigue returned, I developed flu-like symptoms, probably also brought on by the late nights causing my Lyme disease to progress. However, with two young children who don’t sleep through the night attending school and catching colds and the flu themselves, it was naturally assumed that the events reported below were simply a case of an immune system weakened by lack of sleep allowing me to catch everything I came into contact with.

April 6th … started to be nauseous on 4/5, worse in morning, with pain and weakness and muscle pain in back. took homeopathic ipecac about 4 times, nausea is reduced but other symptoms continue

April 7th … had diarrhea all night, but have been well all day, with almost no symptoms besides weakness from lack of food. ate, biked, etc. lymph nodes still slightly swollen

April 10th … Had cold symptoms. Seems to have cleared up by evening. Getting more sleep would probably help a lot.

my story, symptoms

Fatigue lifts and returns … Could it be mold?

I was relieved when the heavy fatigue I had had over christmas/new years was gone by sometime in February/March. I don’t remember much else about last spring, in fact one of the things affected by Lyme in my case is my ability to remember things. However, I do recall having serial colds during all of it. Like clockwork, every two weeks, a new cold would start. One week later it would start to clear up and then a week after that another cold would start. Also, I know that by early April I had developed regular neck pain and stiffness.

In March, we discovered a serious case of mold due to a hidden leak in our bathroom (something my MD/homeopath had actually asked about when my fatigue began), and that led us down the wrong path and probably delayed the final diagnosis of my illness. I just assumed, during this period, that my immune system wasn’t quite up to snuff, because of a combination of mold, late nights, interrupted sleep (due to young kids) and constant attacks of colds, etc. because Kavi had started school. I worked with my MD/homeopath to try to boost my immune system and worked on my lifestyle to include more rest. However, I also noted that my lymph nodes were swollen every evening, and this concerned me.

In early April when we started removing the mold (3/31/07), I even had a relapse (on 4/4/07). This relapse also coincided with a paper deadline. I didn’t make the connection to the late nights until December 2007, but I did make an appointment to see my MD/homeopath. She continued to work with me on immune boosters.