October 9, 2009 at 9:01 pm (treatment)
Tags: antibiotics, cure, fatigue, headaches, healing, massage, progress, stats, summary, thoughts, visualization
I can’t believe it’s been over a month since I last wrote in … I certainly haven’t forgotten about this blog or having Lyme disease, but as an academic the beginning of the semester always rolls over me in waves leaving little time to step back and reflect. Fall is especially bad because there are many conferences to travel to (I just returned from a trip) and I always submit to an important conference in my field around mid September (just before my trip this year).
It’s hard to believe how far I’ve come in a year, but as I roll through my second year since diagnosis I often find myself reflecting on where I’ve been. Two years ago I was desperately seeking a diagnosis, unsure what was happening to me, and floundering at work as I attempted to sprint through what felt like molasses. A year ago I had finally come to terms with the prospect of long term antibiotics, only to descend into one of my worst periods ever. I will never forget my attempts to submit to that same conference deadline, which consisted of hours and hours of painful attempts to look sideways at my screen as I edited the most mindless parts of my papers interspersed with occasional moments of clarity in which I would sprint away from anything that could stop me from writing with an over the shoulder request to my husband to take over if kids were involved, and dive in to do as much as possible before the pain and cognitive dysfunction descended again. In contrast, leading up to this September’s deadline, I had only brief mild headaches and not even every day, with no other major cognitive impairments. Read the rest of this entry »
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June 3, 2009 at 11:05 am (my story, symptoms, treatment)
Tags: antibiotics, fatigue, headache, healing, hyperthyroid, progress, stats, summary, visualization
I have entered another two month’s worth of numbers into my stats program and analyzed them. Of note is the fact that I was apparently hyperthyroid in Feb/March (and maybe before that) but went into remission in April. I’m gaining back my weight now, which apparently was caused at least partly by that.
I’ve created a new way of visualizing my data. The next image summarizes major symptoms since symptom onset (Fall ‘06) through August ‘08. Major events (such as the mold bloom) are marked at the bottom.
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March 28, 2009 at 8:50 pm (my story, symptoms)
Tags: antibiotics, fatigue, headaches, healing, neck, progress, stats, summary, visualization
I expect this will become an (approximately) monthly post as long as I am still in treatment. I have entered another month’s worth of numbers into my stats program and analyzed them. This month is of note because I switched meds half way through –Penicillin was begun March 13th. At that time, Zithromax, Mepron, and Ceftin were stopped. I also lost 12 lbs sometime between when I last weighed myself (maybe over christmas?) and now, probably due in part to Ceftin causing me to have about 4 bowel movements a day.
The news continues to be good. The charts below illustrate the change in various symptoms from last month to this (click on them to see close ups)
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February 22, 2009 at 8:40 pm (my story, thoughts)
Tags: antibiotics, flare-up, flu, thoughts
It’s been a while since I posted anything on this blog … when things are good I’m just less motivated –there’s so many other things I want to do, and when things are bad, I suddenly don’t have the time. That’s certainly been the pattern in the last month…
Almost immediately after my last update, I started a major downslide (the beginning of it is described in that post). The whole experience was highly hormonal, with wild emotion changes, extreme fatigue, heat, cold, and so on (and, interestingly, coincided with my period). I ended up leaving early to see my doctor just to get away from it all, and spent a lovely weekend with my 1 month old niece in Philly before going to NY. I arrived at the doctor’s office right around the end of it and was given a new antibiotic (Ceftin).
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February 6, 2009 at 6:35 pm (thoughts)
Tags: activism, antibiotics, lyme-wars, thoughts
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference
– Robert Frost
Lyme politics have been on my mind recently, due to the efforts to reconvene the IDSA panel that was responsible for creating a very restrictive definition of Lyme Disease and it’s treatment. The question I am concerned with in this post is how thinking, caring people could write down something so narrow and incomplete. The divided politics of this situation have never adequately explained to me how we got here.
Now, there is a lot of evidence that the individuals who wrote the IDSA guidelines are biased*, and that is certainly a possible explanation for what happened. In fact, as a result of investigations into this bias, a new panel has been convened. To the dismay of many individuals with Lyme disease, the new panel, although lacking conflicts of interest, still seems unlikely to make major changes to the IDSA treatment guidelines. Yet its web page states that its members are “committed to considering all points of view” and the panel is taking public comments until April 3, 2009.
Let’s for a moment take the optimistic viewpoint that the members of the panel are truly committed to this. Let’s suppose that they chose medicine because they are compassionate individuals who want to help people, that they are smart and capable of understanding scientific literature, and that they lack bias. Why do so many doctors choose to believe in a version of Lyme disease that excludes so many of us?
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January 29, 2009 at 7:29 pm (my story, treatment)
Tags: antibiotics, fatigue, flare-up, mold
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. Read the rest of this entry »
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August 22, 2008 at 3:05 pm (treatment)
Tags: antibiotics, marshall protocol, parasites
I feel as if suddenly a world of information is opening up to me about treatment options. My ID doctor in Pittsburgh and my LLMD (Lyme Literate MD) in NY are willing to work together, my MD/Homeopath is supporting and supplementing, and everything from Pamela Weintraub’s book to emails from complete strangers seems to be pointing in this direction. My symptoms are improving, and my LLMD says I should expect monthly improvements or we have the meds wrong. Things are looking good.
Funny, then, that I can’t help questioning aspects of my treatment even as I embark on it. The more I learn about lyme, the more plausible treatments such as the Marshall Protocol sound, or alternately a mixed approach where alternative medicines and antibiotics are applied in concert to address a wide range of issues from lyme (and its many forms) to a variety of co-infections. The Marshall Protocol is in direct conflict with my current approach, though I have it in mind as a next step if this doesn’t work. The multi system, multi infection mixed approach can be boosted beyond my current level. Step one is to add Mepron to my antibiotics (an anti-parasitic safe enough that it is sometimes taken prophylactically), and follow that by anti-parasitic supplements. Mepron was recommended by my LLMD, and the choice was approved of by everyone I’ve spoken with
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August 2, 2008 at 9:11 pm (my story, treatment)
Tags: antibiotics, dizzy, teeth
Well I’m almost two months into the daily antibiotic experiment “with an n of one” as my ID doc in Pittsburgh says. Is it working? Hard to say. it’s hard not to believe they’re doing something … I seem to feel better, and psychologically I love the fact that I’m taking some action, however uncertain.
So what’s it like day to day? The particular one I’m on can only be taken two hours on either side from food. Not easy for a consummate snacker like myself. Worse, I can’t do start/end of day because it’s very important that I take pro-biotics (sacromyces, in particular) after my antibiotics. So I have to be up for at least 2 hours after I take the antibiotic. I’ve settled on taking them when I wake up/at 3pm and just not snacking between lunch and dinner. Unlike the IV antibiotics I don’t need to provide a litany of advice here — taking antibiotics for a month or two is not all that different from taking antibiotics for a week.
- My teeth turned grey due to the antibiotics…
One reaction that I could do without is that they make my teeth black (not unexpected given that it had happened during the IV treatment as well, and is a commonly known side effect of long term doxycyclin, an antibiotic very similar to the one I’m on). My dentist was kind enough to do a mid-antibiotic cleaning with another planned for after I’m done, and they’re currently back to white (we’ll see how long that lasts!)
At the start, the antibiotics made me feel drunk for hours on end (on day two it lasted 8 hours). After that passed it was an hour or two a day for a while, now
- …and the dentist turned them white again
that’s pretty much behind me. However a different form of dizziness I experienced even before the antibiotics has become more severe: I find that every time I change height (e.g. sit to stand; lie to sit; etc) I feel dizzy and sometimes almost black out. I hold on to the nearest surface and it usually passes very quickly.
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July 11, 2008 at 9:04 pm (my story, treatment)
Tags: antibiotics
It’s been a long month, with lots of ups and downs. Two periods of feeling like myself (one going on right now :). In between I started antibiotics again (I’m now one month in, and aside from black teeth (and dizziness/a feeling of drunkenness mostly at the beginning) the other big difference is that I can’t remember having had a headache in a while :).
I also tried Provigil 3 times. Aide from a wierd episode of uncontrollable blinking, I think it gave me a little more stamina when I was tired, but it wasn’t an outstanding effect (and it was mostly overwhelmed by the fact that I was exhausted by traveling).
The other good news was the fact that I made it a total of 7 whole weeks between bad colds (end of April to June 22). However, the June 22nd cold was as debilitating as the one in April, if not more. My reaction to colds seems to be getting worse (my MD/Homeopath says it’s because I’m in adrenal fatigue; the Mayo clinic of course claims such a thing doesn’t exist). All I know is, if I start getting colds like this more frequently when the kids go back to school in the fall, it will be a very difficult semester.
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December 20, 2007 at 5:03 pm (treatment)
Tags: advice, antibiotics, PIC
A PIC line allows repeated doses of intravenous (IV) fluid to be administered without having to repeatedly stick a needle in a vein. This is helpful when one has been told to administer IV antibiotics daily for six weeks. That much I knew when I arrived at the hospital at 9am on Tuesday morning. What I didn’t expect is that it would take almost 8 hours for this line to be inserted! Luckily, I spent much of that time with a wonderful neighbor in the bed next to me. Not only was she a sweet woman (she and her husband bought me lunch as I was unprepared with cash and had no way to go get it!) and a reminder of how much I have to be grateful for (a grandmother to many, she also was on her 6th chemo treatment), but she had a PIC line of her own and was full of advice. Here is what I learned about PIC lines and IV antibiotics both from her and from my own experiences over the last six weeks:
- Make sure the PIC line is inserted in your non-dominant arm! This will make it easier to deal with showering, administering medicine, and so on
- Ask that it be inserted about 2 inches above your elbow. This will avoid problems such as the dressing being in the crack of your elbow where the PIC line may get bends and kinks in it
- Be sure that everyone dealing with your PIC line keeps the insertion area very sterile. Do not be afraid to speak up and ask people how they are making this happen, and what to watch for or do yourself.
- Make sure that you are happy with your dressing. My PIC line’s dressing had to be changed every week. I was lucky enough to have a nurse very experienced with PIC lines most weeks, and I could really tell the differences on the week that a substitute changed the dressing. Even so, in the first two weeks, I had to ask for an “emergency” mid-week dressing change to ensure that the line wasn’t kinking, the tape wasn’t causing my arm to break out in hives and so on. If you are uncomfortable with something, speak up.
- Be sure to ask for an extension so you can reach the line with both hands. It was an invaluable aid that allowed me to administer my medication alone when my husband was busy with the kids or traveling
- Also ask for a shower bag. I used a combination of an ACE wrap, two rounds of saran wrap and a shower bag (a plastic bag with a drawstring at the top and bottom), and pulled the drawstring so tight it almost cut off my circulation. Even with all of that, my ACE wrap sometimes got wet while I showered.
- An ACE wrap or the top of a sock (cut off the foot) both make great covers for your PIC line. This helps the line from catching and pulling (you don’t want it to pull out!) and also provides some privacy if you are in short sleeves
- If your meds normally infuse by gravity (as mine did), and nothing’s happening, check if there’s air in the line. I made the mistake more than once of pushing the saline through so far that the bubble of air in the saline tube ended up in my line and then nothing would infuse. Once I discovered the cause of this problem, I didn’t have any further troubles with gravity-based infusion.
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