my story, treatment

Update and mold remediation

This is a radical topic change for a moment, but I want to give a quick update to folks about how the past few months have been. The more distance I have from last September/October the more aware I am of just how sick I was in that period. I didn’t write much about how bad I was feeling, but a few details can be found in the posts from that period (e.g.,still not over…” and “Highs and Lows“) and perhaps their topics are most illustrative — I made my first visit to a support group; wrote about how the people around me could best help, and reveled in a few pain-free moments.  Rather than dwell on the details, I’ll just say that that period of my life makes me even more grateful for what I have now. It took only about 2 days from the switch from Minocyclin to Zithromax for my improvement to start, and while I think I have plateaued, I am definitely doing well.

Last week was one of my best since February 2008, with about 5 or 6 good days and 3 days in a row feeling like my healthy self (boy can that get addictive!) except for the early bedtime. Looking back over my very sparse notes from last Spring I’d say I’m doing about as well as I was right after the IV antibiotics ended. On the other hand, I also still have bad weeks, and this one definitely qualifies. Hot flashes (sometimes every few minutes); nausea; naps (twice a day sometimes); that heaviness in the limbs … time to hole up and rest.

Interestingly, my improvement also coincided approximately with the installation of a device to dry out my house a little more than our basement humidifiers could. Continue reading “Update and mold remediation”

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.