On Tuesday, I sent a note to Dr. M with the dates I had started taking the azithromycin and minocycline (10/5/10 and 10/10/10 respectively) -- not quite 3 weeks even for the azithromycin. At my appointment, she had told me to wait three more weeks, and if I wasn't feeling better, to switch my meds again -- drop the azithromycin and tinidazole and add Cipro 500 mg twice a day.

I got a call from her nurse today telling me to stick to the schedule she had given me, even though at my appointment she thought I had been taking the new meds for 5 weeks. I don't understand. Does it not matter how many weeks I am on a medication before we give up on it?

I am having doubts...not sure this was the right course to take. I'm having frequent nausea and gut pain again -- couldn't stand fully straight this morning when I got up. And I'm back to 6 or more bouts of diarrhea per day. I have had to take Lotronex twice this week, so I could leave the house for doctor's appointments, and had breakthrough diarrhea after taking it. It feels like my body is telling me to stop...but what happens then? Or, what will happen if I double the minocycline as Dr. M instructed when I get the new prescription? I wish I had someone I trusted to give me good Lyme advice.

I went to the dermatologist today. She examined the rash on my legs and told me it is Schaumberg's Disease -- an inflammation of the superficial capillaries. The cause is unknown; she said it could have been caused by my infections or be autoimmune. She didn't biopsy it since it hasn't been itchy or painful, and just told me to come back if it continued to spread or became symptomatic. It's ugly, but that doesn't seem to matter very much right now.

Yesterday I had my second appointment with Dr.M. It was a discouraging visit. She seemed surprised that I wasn’t feeling better after 3 weeks of new antibiotics…surprised in a “You should be feeling better!” way that felt almost accusing to me. But then, she decided to hold off on treating for Babesia for another six weeks, even though she still really seems to think I have it, because my test results came back negative again. (So did my tests for Bartonella, for which she is currently treating me, and she told me at my last visit that the Babesia tests weren’t very reliable…but I didn’t have the fortitude to push those points after I asked one question that she blew off.) Instead, she is going to have me double my minocycline dose and wait another 3 weeks. If I’m not noticing any change by then she’s going to have me stop the tinidazole and azithromycin and add ciprofloxacin, 500 mg twice a day.

I'm not sure what caused this change in treatment plan. Maybe she wants to exhaust possibilities for treating one coinfection before she starts treating the other one, to avoid confusion? Maybe she thought the Bartonella would be gone after a month, and she was never planning to treat both at once? I thought she was… so I wish she had clarified that better, or that I had been clearheaded enough to ask. I did ask her if it was possible that she was using the right antibiotics, but that my immune system was too compromised for them to work properly, and she said yes. She wants me to try taking transfer factor (bovine colostrum) to boost my immune system.

Next I asked her if she could recommend a GP experienced in treating chronic Lyme patients to whom I could transfer my general health care. I explained what had happened with my current GP. Her response was that she didn’t know of any one else, and (said with a laugh) that patients like me were family physicians’ worst nightmare and that even she wasn’t sure what to do with me. This made me want to burst into tears…or invective…but I was too tired.

I told her that the depression and sleep problems had gotten worse, and mentioned that my therapist had referred me for a neuropsych consult, but that the neuropsychiatrist was hesitant to prescribe anything for me. She suggested trazodone. She was willing to write me a script, so I took it. She said to take it on its own about an hour before bed (i.e., without Lunesta, although she said the two can be taken together). I tried that last night, but it didn't work -- got dizzy, and my blood pressure dropped to 90/54, but I still wasn't sleepy. I ended up taking a Lunesta pill at around 1:30 AM. I think I was asleep by 2:00, and I slept till almost 9:30, when a hang-up call woke me up. I feel hung over, so increasing the dose probably isn't going to be an option, but hopefully it will still help with the darkness that has taken over my brain. I might try taking it earlier in the evening, to see if that helps with the hang-over effect.

The last thing I asked her about was a weird rash that appeared on my legs around the time I started taking the azithromycin and minocycline. It hasn’t been itching, so I decided just to wait until my next scheduled appointment to show it to a doctor. She said it was weird, that it didn’t look like a fungal infection, and that I should go see a dermatologist. I called one when I got home, and they had a cancellation for this afternoon.

Oh, and she commented that my Vitamin D levels were low -- this, with me taking 2450 IU per day.

So that was today…plus diarrhea that broke through my current dose of Lotronex, nausea and nasty gut pain, and having to ask my helper politely TWICE (once each way) to please stop chattering to me as I wasn’t feeling well.

So…some good information, BUT: I am so tired of being blamed when I don’t respond to treatment the way I’m expected to. I am so tired of being told I’m complicated. No, I’m not complicated, my illness is. I’m actually pretty simple -- I’m a sick human who wants to feel better. Do my doctors think I’m resisting on purpose? It is painful, hurtful, frustrating and many other things to have to put up with blame and offhand rude or inappropriate comments almost every time I go to the doctor in order to get help. Who wants to be "every doctor's worst nightmare"?

Week 4 -- insomnia, nightmares, mood swings

Got woken up from a grisly nightmare at 9:45 AM by a confirmation call from Dr. M's office. My next appointment is on Monday.

In the nightmare, a woman was burning a man with a blowtorch. The man was hanging upside down, and he was screaming. There was a smell of burning flesh, and I could hear the whoosh of the blowtorch and see the pain on his face, but I couldn't do anything to stop what was happening. Vivid nightmares like this have become a regular part of my sleep. When I have them I wake up physically and emotionally exhausted. So now, I have insomnia, which keeps me from going to sleep; I wake frequently with pain; and I have grisly awful nightmares that seem to go on forever and from which it is difficult or impossible to wake.

Two weekends ago, I also had the second of two episodes of severe mood swings. Both times, it was like a switch had flipped in my brain and suddenly, instead of being extremely depressed, I was...like a combination of happy and Eveready battery bunny. This time I made a word list to try to describe it:

sudden
mood swing
down to up
giddy
fizzy
anxious
<<< impulse control
jiggling knee -- hard to stop
itchy
headache

Both mood swings lasted for a little over two days, and ended as suddenly as they started. They happened 29 days apart. Both times, I had an initial sense of relief from the depression, but after a few minutes I realized that the new feeling (my therapist calls it "manicky") wasn't any easier to cope with.

Week 2

The replacement minocycline came last week. I started it yesterday. Side effects from the week of azithromycin include more diarrhea and a vaginal infection, and each morning when I wake up my tongue is thickly coated with nasty-tasting goo. Dr. M told me to call her if the diarrhea got worse, so I left a message this morning.

Last week I finally hired a helper. Having her will allow me to keep getting food from the farm co-op -- she will pick it up. She's also going to take me on an errand run once a week, and take me to doctor's appointments (and take notes when I need it). These are all good things to have help with -- things that have been either difficult or impossible for me to do on my own for more than a year. Yet...it's a further loss of independence, another step toward complete physical and financial reliance on others. I feel like an ungrateful whiner. I want to feel grateful that there are people in my life with the means to help me in this way, but it's hard when I am losing autonomy at the same time.

Really struggling with depression. More and more, I feel beaten. Seven years of being seriously ill have taken their toll. The treatment itself is physically taxing. The longer it goes on, the harder it is for me to imagine a future when I won't be dealing with this on a daily basis. I think in some fundamental way I am losing hope. I have been having thoughts of clearing out my house...giving away everything I don't use on a daily basis. And, I have been finding myself thinking about death, and realizing that I'm no longer scared of it.

But, at the same time, I have a very strong survival instinct...it's very hard for me to let go. So, I'm still forcing myself to put one foot in front of the other. Starting the second new antibiotic was one step. Tomorrow I have an appointment with a neuropsychiatrist to see if I can get any chemical help for the depression, insomnia, mood swings, and frightening nightmares. That's another step. And I'm in the process of scheduling an appointment with a neurocognitive psychologist my therapist found for me, to track the progress of the cognitive changes.

---

Dr. M's nurse called back. She is calling in a prescription for Terazol for me for the yeast infection.

Tired

I wrote this last week. I thought I would include it here to help those who know me understand what I mean these days when I say I'm tired.

Tired has actually been my main reality lately. This is not like any tired I have had before…I am tired in my bones, in my cells, in my DNA. I fade in and out, lose giant chunks of time. The days and weeks and months run together; days can seem like years, and months can seem like hours. I no longer recognize myself when I look in the mirror. I was exhausted before I started the treatment, and the treatment has been very hard on my body. Truthfully, I am dreading the new antibiotics. I am not sure how much longer I can do this…but being in this state indefinitely is also not an option. Since I can’t do anything about the big picture, I’m trying to focus on the small stuff.

Laundry…eat…sleep…knit a sock…watch a video and sleep through half of it. Try to interact with Lofty, who knows perfectly well when I am physically present but mentally absent. Put one foot in front of the other. Try not to wonder how long this might go on. Realize that another month has suddenly passed, and I am still here.

New protocol

Yesterday I started the new protocol. Finally.

When the minocycline still hadn't arrived on Monday, I called the pharmacy. They sent me out a replacement order via FedEx. It came today, but I didn't hear the doorbell, so I will get it tomorrow. On Monday I also called Dr. M's office to ask whether to wait for the minocycline or start with the azithromycin. She called me back yesterday and told me to start the azithromycin first. I should have called her last week...didn't occur to me till Monday that the important thing might not be the order of the meds but the delay in between in case of adverse reactions.

Metatags

I added metatags to my blog today, following the instructions on this page. Thanks, Greenlava!