my story, thoughts, treatment

Just a Cold

I’m miserable this week. And it’s making me happy. I’m coughing up gunk, sneezing, even slightly nauseous, and I’m still on top of the world. Why? Because it’s just a cold. It started on Saturday with a sore throat, and I am already starting to feel better. I can still walk my dog, I am still cooking and cleaning and taking care of my family, I missed only one day of work, and I can treat it with simple supplements, cough drops, and a warm bath or sauna (which I luckily have in the house because I used it to treat my Lyme disease). It is not a relapse which I feared might be coming on (as they have every year until this) at the start of December. I had the classic signs (nightly sweats, increasing fatigue days) but began a new set of supplements and seem to have staved it off. The supplements come straight out of the Burrascano guidelines, and include high quality fish oil, vitamin D, vitamin C, vitamin B, CoQ10, and a few specialty supplements suggested by my Naturopath. While on them (until this week) I didn’t even get a cold as my family cycled through more than one. And the relapse signs faded. So, pill popper I am not (by preference) but I’ll keep taking these!

I remember the days and days of being grateful for feeling well when I first came out of the worst of my Lyme disease (which I re-experience after each relapse), but today I am grateful for feeling lousy! And laughing at the very idea that a cold is a reason to give thanks.

my story, symptoms

Another cold, loss of the use of my left arm

We left for Europe, and I rested as much as possible on that trip. I didn’t attend the conference, focusing only on paper writing, and generally tried to take it easy. Despite this, I began the week with another cold (approximately the 10th cold or flu I’d had since the beginning of April, meaning I’d had almost 2 per month during that period). When I returned, I saw my MD/homeopath again (on 9/25) and we discussed my entire history (extending long before the current disease had started). This led her to believe she’d found the right remedy, and both she and I ended the visit on a hopeful note, the first I’d felt in a long time.

Sadly, I reacted to the medication by getting worse. In particular, I began to feel shooting pains in my left shoulder on 9/28 and by 9/30 I could not use my arm for anything due to the pain, even turning the steering wheel of a car. My back pain reached its peak for the whole illness on 9/27 and I developed night sweats (usually a sign my body is successfully fighting something, so I was hopeful at first. However, my lymph nodes popped out more and I also developed an itchy rash between my legs.

I called my MD/homeopath, and she suggested a remedy, and once again within 24 hours my suddenly debilitating arm pain was cleared up. However, the remainder of my symptoms continued throughout the month of October: my back pain went up and down, I developed another cold, my lymph nodes remained swollen, and even occasionally ached painfully.

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.

my story, symptoms

It all begin on a cold day in november or december…

All I remember for sure is that by the time Megan and Laura visited on December 7th, I was already so fatigued that I had to go to bed each night around 9 pm or earlier. I also noted that my hair was falling out at a surprising rate. Also around then or before lymph nodes started swelling up each evening, but back to normal each morning. In fact, each evening I felt as if a cold was descending — post-nasal drip, sore throat, etc. This continued on for 6 weeks or more, and then slowly began to get better in the Spring. Though I only remember it lasting 6-8 weeks, I didn’t write “getting back to normal” in my diary until March 16, 2007. During November-January, the fatigue was so bad that I was napping every day, neglecting the household and anything non-essential (such as writing christmas cards) and generally felt exhausted. With Anind’s parents in Europe for this period, there wasn’t time for anything but kids and sleep. Despite this, from when I woke up until about 7pm, I looked and felt pretty normal. In fact, most people who saw me at those times of day had trouble believing I was ill.

During this period, I went to two different doctors. The “traditional” PCP ordered a test for mono and some blood work, and when the mono test came back negative and the blood work was normal, suggested that I just wait it out. He explained that there are several other viruses that cause mono-like symptoms and that he expected this would clear up in it’s own time. A few weeks later when I was still sick. The homeopath/MD gave me immune boosters at first. Then one day I came in around 5pm and she saw the difference from middle of the day — in fact she said something like “you’re look terrible” with surprise. She ordered an X-Ray of my chest (which came back negative) and some blood work (which came back normal) and prescribed antibiotics. She also asked if we had mold in the house (I said no of course not! Little did I know…)

I decided not to take them because I didn’t think I had a sinus infection or anything else that would justify them, just this ongoing fatigue. As it turns out this was a lucky decision — because I had neither (insufficient) antibiotics (for lyme you need much longer treatment than a standard course) nor steroids in the entire year up until my diagnosis finally came through, my prognosis is much better than it would otherwise be.