I am walking across the main floor of my house when, out of the edge of my vision, I see a flash of color in the dining-room window. There should not be color there. I turn to look, and see a shocking sight: an upside-down face, flushed with color, unconscious but alive. The face is stuck to the window glass, one cheek pressed flat. It belongs to a dark-haired woman. At the same time that I am figuring out what I am seeing, there is a slithery sucking squeak of sound and the face disappears. A moment of silence and almost-normality is followed by a bone-shaking thud. I realize that the woman's body has hit the ground in the air shaft, and that she is probably dead. And then I think, Who was she? There is only one dark-haired woman who lives here, and it is me.
My therapist asked me yesterday if Malarone could cause night terrors. I just checked, and one of the rare listed side effects is "vivid dreams". Malarone or Abilify? Or artemisinin? I am taking too many meds...it's impossible to figure out which one is the culprit.
I forgot to mention...this happened a few days ago, but time is no longer moving very linearly for me. Two days after I started taking the Malarone, I had what seemed like a Herx. In the evening, I suddenly got very sweaty with the shivers. It felt like I was running a high fever, but when I took my temp it was only 97.1, so who knows. It lasted about an hour and then went away.
a Baltimorean with Chronic Lyme Disease
Friday, December 31, 2010
Thursday, December 30, 2010
disAbilify
I took the 1 mg dose yesterday morning after taking Tuesday off. I started feeling itchy about an hour after I took it, and after that I was scratching all day. It just makes me feel wrong...flat and dull, and having trouble thinking and typing -- keep getting the letters confused when I touch type. I haven't done any knitting or crocheting since last weekend, although I have two projects ready to start. I don't feel sad, but I did a bunch more random crying. I didn't have nightmares last night (or any dreams that I can remember), but it feels like this is not a good drug for me.
I'm not sure what to do. I didn't take it today. Still feel very sedated -- in spite of sleeping for 9 1/2 hours last night, I had to lie down at 10:30. Fell asleep again and slept for 3 more hours. The all-over itching is gone, though.
I'm not sure what to do. I didn't take it today. Still feel very sedated -- in spite of sleeping for 9 1/2 hours last night, I had to lie down at 10:30. Fell asleep again and slept for 3 more hours. The all-over itching is gone, though.
another night terror
Night terrors again. This one happened on the night of 12/28-29. I dreamed that I saw a shadow through the frosted glass of the front door. When I opened it, a tall man was standing in the tiny vestibule. He was wearing an overcoat and a felt hat, and holding a large stack of old books. I asked him what he was doing there, and he said he had seen in my library list that I was researching similar subjects and had decided to bring the books to me. He seemed to want to come in, but I took the books and thanked him, and he left, leaving the front door open. Only after he was gone did I realize that he had managed to break into both my house and my library account. Then I started to wonder if the explanation about my library list was just an excuse, and sure enough, when I checked, the books' subjects had nothing to do with me. I kept seeing him in my mind's eye standing in the vestibule...was that a memory or multiple occurrences? It worried me a lot that he had managed to get past the locked front door.
Tuesday, December 28, 2010
Musical brain meds
The Lamictal/Zofran combo did not work. In fact, I ended up so stopped up that it took me a week (and 4 days in a row of using laxatives) to get back to some semblance of normality. In the meantime, I saw my shrink again on 12/21. She had two ideas for new mood swing meds for me -- a melatonin agonist called agomelatin and Abilify, an antipsychotic that seems to help some people with mood swings when they take it at low doses -- and also prescribed Klonopin for my sleep problems. Of the two mood swing options, we decided to try the Abilify first.
I decided to try the Klonopin and the Abilify on separate days, so that if I had any side effects I could tell what was causing them. I took 0.5 mg of Klonopin on 12/22, half an hour before I wanted to go to bed, as suggested. After 90 minutes, it had had no effect. By that time it was 1:00 AM, so I took my regular dose of Lunesta and was asleep by 1:30. I woke up at noon Thursday with a horrible hangover -- very sedated, dizzy, stumbling. I continued to feel drugged for the next three days. I didn't take any more Klonopin.
I ended up waiting until last night to try the Abilify -- wanted to be free of the side effects from the Lamictal/Zofran/Klonopin first, and then I wanted to avoid overlap with my first dose of Malarone on Sunday.
Things did not go well. I took 2 mg of Abilify along with my bedtime meds at 10 PM, as I have noticed that my sleeping pill is taking 2 hours to kick in. I was asleep by midnight, but had a horrific nightmare early in the night about someone beating someone else to death in front of me. I woke up terrified and couldn't get back to sleep for a long time. Unfortunately, I also was very itchy last night and had a hard time waking up this morning. I don't feel good...having a hard time thinking straight, dull brain. My plan is to give myself a day off, then try 1 mg on Wednesday to see if that works better.
(Note from next day: also had some coordination problems and exacerbation of depression -- weird, it was like an overlay on top of my own neutral mood, but I kept starting to cry for no reason)
I called my insurance company last week to see about coverage for agomelatine, and they hadn't heard of it. This morning I thought to look it up in the 2011 Medicare formulary, and it's not listed. So, it looks like agomelatine is not going to be an option for me.
One other thing I forgot to mention -- I'm back to taking Ambien CR instead of Lunesta. I tried it again on Sunday, and it worked. The onset is delayed 2 hours, as it was when I stopped using it, but after that it is working better than the Lunesta was.
This whole process is so bewildering.
I decided to try the Klonopin and the Abilify on separate days, so that if I had any side effects I could tell what was causing them. I took 0.5 mg of Klonopin on 12/22, half an hour before I wanted to go to bed, as suggested. After 90 minutes, it had had no effect. By that time it was 1:00 AM, so I took my regular dose of Lunesta and was asleep by 1:30. I woke up at noon Thursday with a horrible hangover -- very sedated, dizzy, stumbling. I continued to feel drugged for the next three days. I didn't take any more Klonopin.
I ended up waiting until last night to try the Abilify -- wanted to be free of the side effects from the Lamictal/Zofran/Klonopin first, and then I wanted to avoid overlap with my first dose of Malarone on Sunday.
Things did not go well. I took 2 mg of Abilify along with my bedtime meds at 10 PM, as I have noticed that my sleeping pill is taking 2 hours to kick in. I was asleep by midnight, but had a horrific nightmare early in the night about someone beating someone else to death in front of me. I woke up terrified and couldn't get back to sleep for a long time. Unfortunately, I also was very itchy last night and had a hard time waking up this morning. I don't feel good...having a hard time thinking straight, dull brain. My plan is to give myself a day off, then try 1 mg on Wednesday to see if that works better.
(Note from next day: also had some coordination problems and exacerbation of depression -- weird, it was like an overlay on top of my own neutral mood, but I kept starting to cry for no reason)
I called my insurance company last week to see about coverage for agomelatine, and they hadn't heard of it. This morning I thought to look it up in the 2011 Medicare formulary, and it's not listed. So, it looks like agomelatine is not going to be an option for me.
One other thing I forgot to mention -- I'm back to taking Ambien CR instead of Lunesta. I tried it again on Sunday, and it worked. The onset is delayed 2 hours, as it was when I stopped using it, but after that it is working better than the Lunesta was.
This whole process is so bewildering.
Belated Lyme update
Over the weekend, I logged into my blog to check a medication dose, and realized that I was nearly a month behind with my medication updates. I'm going to try to rectify that today, although I am feeling very slow and dull from a new med.
On 12/6 I had my third appointment with LLMD Dr. M. Here are my notes for my appointment, with her responses in italics.
Notes
On 12/6 I had my third appointment with LLMD Dr. M. Here are my notes for my appointment, with her responses in italics.
Notes
10/25 -- last visit with Dr. M; tried trazodone 1 hour before bed as directed. It did not work well for me. Onset very delayed -- didn't start to take effect until >4 hours after I took it. Finally gave up and took Lunesta at 2:30AM. Next day I felt sedated and hung over and had physical tremor in my hands. Did not take trazodone again.
10/26 -- went to see dermatologist Dr. A about rash on legs. She dxed it as Schaumberg's Disease (inflammation of the superficial capillaries that causes the capillaries to leak). The cause is unknown, but she said my presentation was pretty classic. She said it could have been caused by my infections, be autoimmune, or be a reaction to one of my antibiotics. She said she'd like to see me discontinue the abx to see if it made a difference, but understood if I could not do that. She didn't take a biopsy since the rash wasn't itchy or painful, just told me to come back if it got worse (spread farther up my legs, turned up on other parts of my body, or became symptomatic). It went away when I discontinued the azithromycin.
10/31: increased dose of minocycline as directed; stopped multivitamin; stopped Lyme herbs
11/9: I had another round of neurocognitive testing. The psychologist scored the test I had the most trouble with last time, and while my performance was still below average, it was quite a bit better than before. This was encouraging, although I have not noticed any improvement in my day-to-day cognitive function. He wanted to do some more tests; scheduled for 12/15.
11/13: third bout of mood swings -- worst one so far. Very rapid cycling -- switching several times an hour for several hours, ranging from hypomania to suicidal thoughts. At the same time, I had severe nausea, stomach pain, and diarrhea. (Note: my 4th bout of mood swings was on 12/10.)
11/15: second appt. with psychiatrist Dr. L, after a 3-week interval. My therapist went with me. As my therapist had suspected, the psychiatrist had no intention of prescribing anything for me, and hadn’t even really given it any thought. I fired her.
My parents did some research for me. My dad talked to his shrink, and my mom talked to a friend who is a shrink. Both doctors said that the bipolar-like symptoms were likely caused either by my illness or by the meds I’m taking. Both also said that taking antidepressants could make things worse if I was having rapid mood swing cycles. Apparently taking antidepressants in a depressive phase can worsen manic episodes. My dad’s doc said that mood swings can be made worse by hypothyroidism, too. My mom’s friend thought that hormones might be involved and was glad I was getting that checked out soon.
11/17: Saw therapist. I told her that I was very afraid of how bad the next mood swing might be. She suggested that we find a way to get me a small prescription of Xanax, so I would have something to help with the next mood swing in case I didn't have a new psychiatrist by then. She wrote a note to my PCP and he called one in on 11/19.
11/21: Discontinued azithromycin and tinidazole, started cipro (all as directed). Still taking fluconazole twice a week.
11/24: Saw new psychiatrist, Dr. W (referred by my therapist). She thinks the mood swings are very likely due to hormones, especially because the only other time I have had manic symptoms was when I was on Prednisone. (I always forget that steroids are also hormones.) She debated a bit out loud whether it would be better to start me on a mood stabilizer now or wait till next week to see if the GYN wanted to put me on hormones, giving me all the pros and cons, and then asked me what I thought. I told her my knee-jerk reaction was to say give me the meds, but that I would accept whatever she decided. We talked about it some more, and she ultimately decided to start the mood stabilizer first to give me the best chance at help next month. She started me on a low dose of Lamictal -- 12.5 mg (1/2 of the lowest dose pill). I noticed an improvement in the depression after about 3 days. I haven't had a chance yet to see if it will help with the mood swings -- started a new cycle on 11/25. Will follow up with her on 12/9 -- she said to wait to increase the dose until after I have seen her again. Oh -- she also said the Xanax was okay.
11/27: started taking new probiotic -- GI Pro Health Scdophilus 3+. This is a non-dairy acidophilus strain grown on a vegetarian cellulose base, guaranteed to befree of maltodextrin, inulin, and FOS. So far I am having alternating periods of constipation and diarrhea (was having only diarrhea before). I will stick with it to see if things even out. (they didn't; I stopped taking it after about 4 weeks)
12/2: Went to see GYN Dr. O to look into the hormone issue -- first visit. I don't have a regular gynecologist -- haven't found one I liked since leaving school. She didn't know anything about Lyme disease and was reluctant to treat. My options would be birth control pills or Lupron, both of which would stop ovulation altogether. Unfortunately, BC pills are no longer an option for me. I took them from 1982-97, then stopped from 1997-2003. When I tried to go back on them they made my blood pressure spike, and my doctor wouldn't let me continue. Dr. O specializes in bioidentical hormones, which is why I went to her, but she said that they cannot be used to control ovulation. She suggested that I wait and see how the Lamictal does with controlling the mood swings, and said I could come back if it didn't work and I wanted to try Lupron.
Questions for today:
I don't feel like I am getting better. Could we talk about this? I have been on antibiotics for 9 1/2 months now. I am demoralized and confused about how to proceed. Flares are still coming every few days, worse with exercise. I still have all the same symptoms.
You said at my last appointment that you weren't really sure what to do with me either. Who do you consult when you're stuck? Do you feel stuck now?
no responseI would like to talk more about Babesia. At appt #1, you told me you thought I had it, and ordered new labs for it (previous labs were negative). At appt #2, you told me you wanted to hold off treating for it for another six weeks, even though you still really seemed to think I have it, because my labs came back negative again.
My labs for Bartonella, for which you are currently treating me, were also negative. You told me at my last visit that the Babesia labs are not very reliable. According to Burrascano, the tests for both infections are unreliable and diagnoses are usually clinical. Could you explain your thinking about this? Are you wanting to exhaust possibilities for treating one coinfection before you start treating the other one, to avoid confusion?
new treatment plan:
maintain minocycline, cipro
Alinia (gut) 2 weeks -- start 12/8 (I started 12/12)
if feel great, contine, refill Alinia
if not better, discontinue minocycline, cipro, alinia, and start:
Malarone (do not take with CoQ10)
protocol: 1 pill a day for 1 week; 1 pill twice a day for 1 week; 2 pills twice a day thereafter
NAC -- 500-600 mg twice daily -- start a few days before or at same time (this is to protect liver -- generally liver irritation would show after 6-8 weeks)
artemisinin twice daily 5 days a week -- resume with Malarone
Malarone and artemisinin are for Babesia. I started Malarone, NAC, and artemisinin on 12/26.Sleep -- still very poor. I'm waking in the middle of the night with pain and itching, then having a lot of trouble getting back to sleep. Pain: neck, hips, knees, and cramps in lower legs and feet. Itching: having systemic itching if I unthinkingly scratch what seems like a small random itch. Twice I have had a raised red rash, once on my ankle and once where my clothing was snuggest around my waist. Itching predated Lamictal. Spending 11-12 hours/day in bed, sleeping 7-8 hours/day. I'm currently using fragrance-free hypoallergenic everything -- conditioner (I clean my hair with that and apple cider vinegar), soap, dish soap, and laundry soap. I haven't changed my brands of anything lately (except new meds and probiotic), and haven't noticed any new ingredients. Can't relate itching to specific foods, but the palms of my hands get itchy after I eat. Do you have any thoughts about this? I had another round of allergy testing just before I started coming to you, but all it showed was that I'm becoming sensitive to the primary foods in my current diet (seems to happen every time I try to compensate by adjusting what I eat).
no help here
State of immune system: At my last appointment, I asked you if it was possible that my immune system was too compromised for the antibiotics to work properly, and you said yes. You wanted me to try taking transfer factors to boost my immune system. I haven’t used transfer factor before, nor did I know what one was, so I did some research. According to an article I found, transfer factors are small molecules that can transfer acquired immunity from one animal to another animal of a different species (i.e., cow or chicken to human). They are immunomodulatory -- they may boost some immune functions and suppress others. I called your office to get the name and manufacturer of the transfer factor product you sell, then called the company to try to get more information. The company wouldn’t tell me which transfer factors are included in their product or how taking these factors might improve my immune response to Lyme disease. That didn’t sit well with me, so I decided to hold off for now. 2 reasons: 1) this product is very costly and has no published record of effectiveness for my condition; 2) I have enough crazy reactions to meds and supps that I am concerned about taking things with undisclosed contents.
transfer factors -- this time she said that they are more for chronic viral infections (mono, EBV) according to Horowitz; Valtrex doesn't work
(so why do they sell Transfer Factor LymePlus? This sounds like a crock)
she said I could ask nurse to call and find out which TFs were present
I had mono in 1982 and EBV 1985
Are you familiar with the Marshall Protocol? Have you ever tried using it for treating Lyme and its coinfections?
Dr. M doesn't do Marshall Protocol -- she thinks it's quacky
"expect BP medicine to do everything" -- obviously hasn't read protocol
Exercise: I have been trying to walk again. I have been very depressed, and I am also losing a lot of muscle mass. Walking helps with my mood, but causes flares that last for several days. Do you have other suggestions?
no help hereDo you have any input on the mid-cycle mood swings/menstrual cycle/hormone question? For example, are you aware of a birth control pill that might be less likely to spike my blood pressure? Or, can you recommend a gynecologist to assist me with this? I would prefer to treat the hormone dysfunction rather than to add more drugs on top of it, if possible. Since the mood swings have been getting worse, doing nothing is not an option, so if it is not possible to treat it hormonally I will have to continue on the mood stabilizer route.
BCP without blood pressure spike? maybe Yaz. Lyme disease could cause hormonal levels to skew. She said that bioidenticals are nice -- certainly a possibility -- don't control ovulation, though (maybe this is what GYN was trying to say
Dr. M said we could do XRT lab salivary testing for estrogen/cortisol levels -- may not be covered by Medicare (check before sending in). She was suprised I was still having periods -- listed menopause as reason for salivary test. She was also surprised when my friend and I both asked "What about a baseline?"
New shrink referred to gyno/endo in January, so I think I'm going to wait till then
Wednesday, December 15, 2010
Gnarly
Two gnarly days...gnarly in the sense that they left me feeling all twisted up on the inside, and worn away on the outside, like a weather-beaten tree. Snow, ice, wind, and mountain pine beetles. That's me.
Yesterday I spent the afternoon at the ophthalmologist's office having my 6-month follow-up. First I had a mERG -- multifocal ERG, to the uninitiated; an ERG is an electroretinogram. For an ERG, a large contact lens hooked up to electrodes is placed in your eye and bright lights are flashed into the eye in several patterns to detect amplitudes of electrical responses in different parts of your retina. The mERG focuses on the central part of the retina -- important for me since that's the only part of my retina that's still functioning. The test showed that my left eye had gotten a lot worse since my last test. The readout from my left eyet now almost exactly matches my right eye -- in fact, when I saw the image, I assumed the doctor had pulled up the wrong test result. I have no electrical response anywhere except in my immediate central vision (if I'm reading the report correctly, a diameter of about 20 degrees). As I said to the doctor, it might explain why I have been walking into things more lately -- the dimmer switch has gotten turned down a few notches. That on top of having no peripheral vision = more collisions with inanimate objects.
It wasn't really a surprise, but I am sad about it. I had hoped that things would stabilize or even improve with the antibiotics. So had the doctor -- I could see the sadness in her eyes when she swivelled around on her stool after she looked at the readout on her computer. That was hard too. I have known her for several years, and she's a delightful person -- happy, loves her job, enjoys working and interacting with patients.
After that I had my eye exam. In addition to the doctor, two different medical residents were sent in to look at my eyes. This happens a lot -- I have a possibly unique autoimmune retinopathy, so everybody always wants to take a look at my retinas. What was different this time, though, was that no one asked my permission in advance. Students are slow, which is understandable, but my left eye is still very photosensitive, and the lights on the scopes are very bright. I find the experience painful and nauseating, and too much of it can trigger a migraine.
The other thing that was hard was that both of the medical residents treated my worsening mERG result as kind of an emergency. They wanted me to see a retina specialist; I have already seen several, and I let them know that politely, but they weren't ready to accept that there might be things they couldn't fix. They ganged up on me with my ophthomologist and he went along with them. So now I have yet another doctor's appointment that I'm not at all sure I want.
I asked my ophthomologist if seeing the retina specialist was likely to make any difference to my treatment, and he said "No, but I just really want to know what this is! And I'm sure you do too, don't you?"
Do I? I'm not sure it matters to me any more. 18 years ago, it might have made a difference, but at this point the parts of my retinas that are dead are dead. So, at least at the moment, it seems to come down to whether I want to humor the doctor. I'm just not sure that another lengthy and exhausting medical appointment is in my best interest, especially if nothing is going to better as a result. I will have to think on it...and maybe read a few of the retina specialist's papers. I have plenty of time -- the appointment is not until March.
That was yesterday. Today I had neurocognitive testing part 4b (as in, 4th round, second part). I'm in a flare, and was in a lot of pain and also worn out and sad from the day before. The flare was a full meal deal -- diarrhea, spinters in the joints, brain fog, hyperacusis, light sensitivity. The psychologist had planned 3 1/2 hours of testing, and I told him up front that I wasn't sure I was up to that. When we talked about my stamina before the first testing session, I told him that 2 hours was a good limit for me both in my ability to concentrate effectively and in not overdoing it physically. This must not have sunk in.
He unfortunately chose to start the second session by offering me his unsolicited opinion that, all other health issues aside, I perform best when I am not tired. This was said in a fatherly, patronizing tone. I just love it when health care professionals who have known me for about five minutes and lack a full grasp of my medical history start giving me opinions I didn't ask for. Do I sound bitter? Well, I am. I have had too much of this shit shoved down my throat. I know I'm in for it when someone says "Can I tell you what I think?" and then immediately launches into the opinion without waiting for me to give my permission. Inside my head I replied no shit, Sherlock, of COURSE fatigue affects my performance, but today actually the pain is more of a problem -- too bad there’s not much I can do about that. Or hey, here’s a thought, why not ask the patient what is hardest for her? She might have some ideas of her own, and you might even learn something useful that way. What I said was simply that this was actually a pretty average day for me (true), and that I would prefer to stop talking and get started so we could get through as much as possible.
So then we did tests and did tests and did tests. At one point the doorbell rang in the middle of a test. He wasn't happy, but I knew it was the pharmacy with my new Lamictal dose and Zofran (more on that later), so I apologized and told him I had to answer it. At another point, I guess he decided that I was responding too slowly, so he started reading the answers to me. It was frustrating, because I can often think of the answer if I have enough time -- I just have to sort through the fog in my head first. (Literally -- it's like wandering through fog with my hands out in front of me, waiting to bump into things and see if they are what I'm looking for.) So I explained that and asked him please to wait until I said I didn't know the answer before he supplied it to me. At 3, my pill alarm went off (I had warned him about that one) and I excused myself to take my meds and get a small snack. I got a brief second wind from the snack, but at 3:50 I suddenly crashed. I could feel myself bottoming out. I told him that I needed to stop really soon, and he said "Well, we only have another 30 minutes or so to go," and kept showing me new test pictures. Two pictures later I just melted down. I suddenly hit this awful state where words and pictures just stop making sense. Since light and sound were already painful, it was overwhelming. All I wanted to do was put my head down, close my eyes, cover my ears, and cry. He encouraged me to "just finish the last five images in this set" and I just lost it. I told him he had upset me by offering advice I did not ask for at the beginning of the session and that I had been doing my best to be polite and try hard on the tests. Then I reminded him of the 2-hour limit we had initially discussed, told him we had gone well past that in both sessions, and said again that I was extremely tired and needed to stop.
And then he got unpleasant. He told me that he didn't deserve to be spoken to like that when he had come for the express purpose of helping me. He told me that he had done me a favor by coming to my house -- which stung, because when we scheduled the second round of testing I made a special point of saying that I would come to him if it was more convenient. And then he said, in a sort of threatening way, that unless we finished the last five images in the subset we had been working on he wouldn't be able to score that test. So I told him I was willing for him to leave it out, and that I would also like him to leave out the remaining 30 minutes of tests, and just write up his report on what we had been able to finish.
So. Two things I have learned in the past two days.
1. I am not a toy. People must ask my permission to use various parts of my body as a medical school practice doll, and I have the right to say no. I think, from now on, if I don't get asked first, the answer is going to be no automatically.
2. No more health care professionals at my house except ones I already know and trust. I have had too many bad health care experiences, and in such cases I need to be able to leave. I can't leave if I'm already at home. Today would have been much simpler if, after 2 hours, I could have stood up, thanked the doctor, offered to schedule a return appointment to finish the testing, and walked out.
Also,
3. I think my new M.O. with health care is to have the absolute minimum necessary to get the job done. My number of appointments has been creeping up again, to 3 or 4 every week. It's too much, and burn-out is hitting me pretty hard.
Before I go to bed, I want to type in the new brain drug plan.
12.5 mg Lamictal daily gave me good depression control and adequate help with my mood swings, but shut down my gut and caused severe, full-body itching.
6.25 mg Lamictal daily and a couple of Dulcolax suppositories got my bowels moving again, but the lower Lamictal dose was no longer effective for depression. Still had some itching, too.
New plan: 10 mg Lamictal (compounded) daily plus 2-4 mg Zofran daily. My psychiatrist told me that Zofran is used for people with cholestasis and liver problems who have lots of itching, so we're hoping it will help with that; also, it has a common side effect of diarrhea, so we're hoping that will sort of zero out the constipating effect of the Lamictal. As Grandma used to say, I'm crossing all my fingers and toes that it will work. I had no idea how depressed I was before I started the Lamictal until I got that depressed again in a matter of days. Man, I so do not want to feel like that any more. Starting the new Lamictal dose tomorrow, and then the Zofran on Friday, so should have some idea of whether or not it's going to work by the time I have my next psych follow-up on 12/21.
Yesterday I spent the afternoon at the ophthalmologist's office having my 6-month follow-up. First I had a mERG -- multifocal ERG, to the uninitiated; an ERG is an electroretinogram. For an ERG, a large contact lens hooked up to electrodes is placed in your eye and bright lights are flashed into the eye in several patterns to detect amplitudes of electrical responses in different parts of your retina. The mERG focuses on the central part of the retina -- important for me since that's the only part of my retina that's still functioning. The test showed that my left eye had gotten a lot worse since my last test. The readout from my left eyet now almost exactly matches my right eye -- in fact, when I saw the image, I assumed the doctor had pulled up the wrong test result. I have no electrical response anywhere except in my immediate central vision (if I'm reading the report correctly, a diameter of about 20 degrees). As I said to the doctor, it might explain why I have been walking into things more lately -- the dimmer switch has gotten turned down a few notches. That on top of having no peripheral vision = more collisions with inanimate objects.
It wasn't really a surprise, but I am sad about it. I had hoped that things would stabilize or even improve with the antibiotics. So had the doctor -- I could see the sadness in her eyes when she swivelled around on her stool after she looked at the readout on her computer. That was hard too. I have known her for several years, and she's a delightful person -- happy, loves her job, enjoys working and interacting with patients.
After that I had my eye exam. In addition to the doctor, two different medical residents were sent in to look at my eyes. This happens a lot -- I have a possibly unique autoimmune retinopathy, so everybody always wants to take a look at my retinas. What was different this time, though, was that no one asked my permission in advance. Students are slow, which is understandable, but my left eye is still very photosensitive, and the lights on the scopes are very bright. I find the experience painful and nauseating, and too much of it can trigger a migraine.
The other thing that was hard was that both of the medical residents treated my worsening mERG result as kind of an emergency. They wanted me to see a retina specialist; I have already seen several, and I let them know that politely, but they weren't ready to accept that there might be things they couldn't fix. They ganged up on me with my ophthomologist and he went along with them. So now I have yet another doctor's appointment that I'm not at all sure I want.
I asked my ophthomologist if seeing the retina specialist was likely to make any difference to my treatment, and he said "No, but I just really want to know what this is! And I'm sure you do too, don't you?"
Do I? I'm not sure it matters to me any more. 18 years ago, it might have made a difference, but at this point the parts of my retinas that are dead are dead. So, at least at the moment, it seems to come down to whether I want to humor the doctor. I'm just not sure that another lengthy and exhausting medical appointment is in my best interest, especially if nothing is going to better as a result. I will have to think on it...and maybe read a few of the retina specialist's papers. I have plenty of time -- the appointment is not until March.
That was yesterday. Today I had neurocognitive testing part 4b (as in, 4th round, second part). I'm in a flare, and was in a lot of pain and also worn out and sad from the day before. The flare was a full meal deal -- diarrhea, spinters in the joints, brain fog, hyperacusis, light sensitivity. The psychologist had planned 3 1/2 hours of testing, and I told him up front that I wasn't sure I was up to that. When we talked about my stamina before the first testing session, I told him that 2 hours was a good limit for me both in my ability to concentrate effectively and in not overdoing it physically. This must not have sunk in.
He unfortunately chose to start the second session by offering me his unsolicited opinion that, all other health issues aside, I perform best when I am not tired. This was said in a fatherly, patronizing tone. I just love it when health care professionals who have known me for about five minutes and lack a full grasp of my medical history start giving me opinions I didn't ask for. Do I sound bitter? Well, I am. I have had too much of this shit shoved down my throat. I know I'm in for it when someone says "Can I tell you what I think?" and then immediately launches into the opinion without waiting for me to give my permission. Inside my head I replied no shit, Sherlock, of COURSE fatigue affects my performance, but today actually the pain is more of a problem -- too bad there’s not much I can do about that. Or hey, here’s a thought, why not ask the patient what is hardest for her? She might have some ideas of her own, and you might even learn something useful that way. What I said was simply that this was actually a pretty average day for me (true), and that I would prefer to stop talking and get started so we could get through as much as possible.
So then we did tests and did tests and did tests. At one point the doorbell rang in the middle of a test. He wasn't happy, but I knew it was the pharmacy with my new Lamictal dose and Zofran (more on that later), so I apologized and told him I had to answer it. At another point, I guess he decided that I was responding too slowly, so he started reading the answers to me. It was frustrating, because I can often think of the answer if I have enough time -- I just have to sort through the fog in my head first. (Literally -- it's like wandering through fog with my hands out in front of me, waiting to bump into things and see if they are what I'm looking for.) So I explained that and asked him please to wait until I said I didn't know the answer before he supplied it to me. At 3, my pill alarm went off (I had warned him about that one) and I excused myself to take my meds and get a small snack. I got a brief second wind from the snack, but at 3:50 I suddenly crashed. I could feel myself bottoming out. I told him that I needed to stop really soon, and he said "Well, we only have another 30 minutes or so to go," and kept showing me new test pictures. Two pictures later I just melted down. I suddenly hit this awful state where words and pictures just stop making sense. Since light and sound were already painful, it was overwhelming. All I wanted to do was put my head down, close my eyes, cover my ears, and cry. He encouraged me to "just finish the last five images in this set" and I just lost it. I told him he had upset me by offering advice I did not ask for at the beginning of the session and that I had been doing my best to be polite and try hard on the tests. Then I reminded him of the 2-hour limit we had initially discussed, told him we had gone well past that in both sessions, and said again that I was extremely tired and needed to stop.
And then he got unpleasant. He told me that he didn't deserve to be spoken to like that when he had come for the express purpose of helping me. He told me that he had done me a favor by coming to my house -- which stung, because when we scheduled the second round of testing I made a special point of saying that I would come to him if it was more convenient. And then he said, in a sort of threatening way, that unless we finished the last five images in the subset we had been working on he wouldn't be able to score that test. So I told him I was willing for him to leave it out, and that I would also like him to leave out the remaining 30 minutes of tests, and just write up his report on what we had been able to finish.
So. Two things I have learned in the past two days.
1. I am not a toy. People must ask my permission to use various parts of my body as a medical school practice doll, and I have the right to say no. I think, from now on, if I don't get asked first, the answer is going to be no automatically.
2. No more health care professionals at my house except ones I already know and trust. I have had too many bad health care experiences, and in such cases I need to be able to leave. I can't leave if I'm already at home. Today would have been much simpler if, after 2 hours, I could have stood up, thanked the doctor, offered to schedule a return appointment to finish the testing, and walked out.
Also,
3. I think my new M.O. with health care is to have the absolute minimum necessary to get the job done. My number of appointments has been creeping up again, to 3 or 4 every week. It's too much, and burn-out is hitting me pretty hard.
Before I go to bed, I want to type in the new brain drug plan.
12.5 mg Lamictal daily gave me good depression control and adequate help with my mood swings, but shut down my gut and caused severe, full-body itching.
6.25 mg Lamictal daily and a couple of Dulcolax suppositories got my bowels moving again, but the lower Lamictal dose was no longer effective for depression. Still had some itching, too.
New plan: 10 mg Lamictal (compounded) daily plus 2-4 mg Zofran daily. My psychiatrist told me that Zofran is used for people with cholestasis and liver problems who have lots of itching, so we're hoping it will help with that; also, it has a common side effect of diarrhea, so we're hoping that will sort of zero out the constipating effect of the Lamictal. As Grandma used to say, I'm crossing all my fingers and toes that it will work. I had no idea how depressed I was before I started the Lamictal until I got that depressed again in a matter of days. Man, I so do not want to feel like that any more. Starting the new Lamictal dose tomorrow, and then the Zofran on Friday, so should have some idea of whether or not it's going to work by the time I have my next psych follow-up on 12/21.
Saturday, December 11, 2010
a thing I keep forgetting
Something is funny with my right ear. It feels full, and when I move I hear an echo like there's water stuck in there. It has been like that for a long time, but I keep forgetting to mention it.
Waiting for a cab
On Thursday, after my Lamictal follow-up, I went to Whole Foods. After I made my purchases, I went to sit in the seating area while I waited for my cab. The store is in a renovated mill building, and the seating area is lit by natural sunlight coming in from high clerestory windows. It is separated from the checkout stands by a half wall. This week, the wall was topped with orchids -- mostly pink, white, and varicolored Phalaenopsis, but there was one plant that looked like a Dancing Lady. Its flowers were yellow flecked with red, each flower with one lower petal enlarged and ruffled like the skirt of a ball gown.
I sent my grandma a Dancing Lady orchid during her last hospitalization with congestive heart failure. I had flown out to be with her, but she didn't want me to stay until the end. When I got home, I sent the plant. I remembered, as a child, her waltzing me around the living room standing on her shoes, and telling me she loved to dance. I think I wanted her to know in some way that that part of her was still alive to me, and would remain so, even while she lay dying in a hospital bed.
The entrance to the seating area was blocked by two people: a store clerk who was replenishing the napkins and utensils next to the microwave oven, and a middle-aged woman wearing a full-length fur coat the tawny color of caramel. She made a striking impression: high-heeled dark leather boots, high-necked sweater and pants of rich cut and materials, shoulder-length hair either straightened or in a weave, and gold jewelry, with the matching flash of gold dental work in her mouth. She was talking on a cell phone, but looked directly at me and asked "Are you sitting down?" I smiled and said that yes, I was planning to. She looked surprised and told me she had been talking to someone else. As I moved around the table to sit, I noticed that there was a second woman behind me.
The second woman was practically invisible compared to the first one -- short where the other woman was tall, graying hair cropped in a natural cut, unobtrusively dressed in dark jeans and a fleece jacket. The two women sat down next to me and began to talk. We were sitting at either end of a table sized for six people, so I turned away slightly to give them some privacy, but I couldn't help hearing what they were saying.
At first they talked about a mutual acquaintance who was dying of pancreatic cancer. The taller woman remarked that the sick friend had certainly abused her body. The shorter woman replied she didn't think the cancer had anything to do with how the sick woman had taken care of herself, and added that with pancreatic cancer, there was nothing you could do -- it was a death sentence. The taller woman replied that you never knew what was in God's will. The shorter woman said, "No, I saw her recently, and she is on her way out."
Then the conversation turned to relationships, and the taller woman asked the shorter woman how hers was going. The shorter woman said that she had been dating someone for several months, and the taller woman asked her if she was thinking about marriage. The shorter woman said, "No, no, no. I couldn't go through that again. My husband died of pancreatic cancer, you know. Watching him die was I think the hardest thing I ever did. At the funeral, when they closed the casket lid, I felt the pain down deep in my gut. For weeks afterwards, I kept wishing that casket would open up and he would climb out...but other times, I knew he was gone."
I wanted to say something to the shorter woman when I left -- to give her my condolences. I know that pain of loss...but then I would have had to acknowledge that I had overheard the whole conversation, so I didn't say anything.
I don't know why, but this conversation made a strong impression on me, and I wanted to write it down. I tried to get it as close to right as I could, two days later.
As for the Lamictal...here is the scoop.
The 12.5 dose caused serious constipation and itching. However, it was working effectively to help my mood. We talked about other possible options, and the psychiatrist brought up Lithium, but she said she was concerned that, with my super-slow metabolism of drugs, I might end up with toxic levels in my kidneys. So, she suggested that we try an experiment of cutting my Lamictal dose even smaller, to 6.25 mg per day, to see if I could retain the benefits without the side effects. After a 48-hour break, I took the first 6.25 dose yesterday morning. I also had what I think might have been my fourth mood swing episode yesterday, and if I'm right, it was much less severe than the last one. This time, I only had the "up" without the "down", and it seemed to be one sustained episode that lasted for several hours. Being that "up" makes me feel anxious -- the metaphors I thought of this time were a pop bottle after it has been shaken, and Road Runner -- but I was able to control the anxiety with a half a tablet of Xanax (also approved by the psychiatrist). As with the other episodes, I was very tired afterwards, and I slept for over 11 hours last night with vivid dreams.
I sent my grandma a Dancing Lady orchid during her last hospitalization with congestive heart failure. I had flown out to be with her, but she didn't want me to stay until the end. When I got home, I sent the plant. I remembered, as a child, her waltzing me around the living room standing on her shoes, and telling me she loved to dance. I think I wanted her to know in some way that that part of her was still alive to me, and would remain so, even while she lay dying in a hospital bed.
The entrance to the seating area was blocked by two people: a store clerk who was replenishing the napkins and utensils next to the microwave oven, and a middle-aged woman wearing a full-length fur coat the tawny color of caramel. She made a striking impression: high-heeled dark leather boots, high-necked sweater and pants of rich cut and materials, shoulder-length hair either straightened or in a weave, and gold jewelry, with the matching flash of gold dental work in her mouth. She was talking on a cell phone, but looked directly at me and asked "Are you sitting down?" I smiled and said that yes, I was planning to. She looked surprised and told me she had been talking to someone else. As I moved around the table to sit, I noticed that there was a second woman behind me.
The second woman was practically invisible compared to the first one -- short where the other woman was tall, graying hair cropped in a natural cut, unobtrusively dressed in dark jeans and a fleece jacket. The two women sat down next to me and began to talk. We were sitting at either end of a table sized for six people, so I turned away slightly to give them some privacy, but I couldn't help hearing what they were saying.
At first they talked about a mutual acquaintance who was dying of pancreatic cancer. The taller woman remarked that the sick friend had certainly abused her body. The shorter woman replied she didn't think the cancer had anything to do with how the sick woman had taken care of herself, and added that with pancreatic cancer, there was nothing you could do -- it was a death sentence. The taller woman replied that you never knew what was in God's will. The shorter woman said, "No, I saw her recently, and she is on her way out."
Then the conversation turned to relationships, and the taller woman asked the shorter woman how hers was going. The shorter woman said that she had been dating someone for several months, and the taller woman asked her if she was thinking about marriage. The shorter woman said, "No, no, no. I couldn't go through that again. My husband died of pancreatic cancer, you know. Watching him die was I think the hardest thing I ever did. At the funeral, when they closed the casket lid, I felt the pain down deep in my gut. For weeks afterwards, I kept wishing that casket would open up and he would climb out...but other times, I knew he was gone."
I wanted to say something to the shorter woman when I left -- to give her my condolences. I know that pain of loss...but then I would have had to acknowledge that I had overheard the whole conversation, so I didn't say anything.
I don't know why, but this conversation made a strong impression on me, and I wanted to write it down. I tried to get it as close to right as I could, two days later.
As for the Lamictal...here is the scoop.
The 12.5 dose caused serious constipation and itching. However, it was working effectively to help my mood. We talked about other possible options, and the psychiatrist brought up Lithium, but she said she was concerned that, with my super-slow metabolism of drugs, I might end up with toxic levels in my kidneys. So, she suggested that we try an experiment of cutting my Lamictal dose even smaller, to 6.25 mg per day, to see if I could retain the benefits without the side effects. After a 48-hour break, I took the first 6.25 dose yesterday morning. I also had what I think might have been my fourth mood swing episode yesterday, and if I'm right, it was much less severe than the last one. This time, I only had the "up" without the "down", and it seemed to be one sustained episode that lasted for several hours. Being that "up" makes me feel anxious -- the metaphors I thought of this time were a pop bottle after it has been shaken, and Road Runner -- but I was able to control the anxiety with a half a tablet of Xanax (also approved by the psychiatrist). As with the other episodes, I was very tired afterwards, and I slept for over 11 hours last night with vivid dreams.
Tuesday, November 30, 2010
Surfacing
The Lamictal is helping. Even on the tiny dose I'm on, my mood has lightened and evened out by several degrees. Not perfect, but better. I suppose it could be placebo effect at this point, but I feel like I have my head above water again for the first time in months.
On the other hand...having my head above water allows me to see the extent of the flood, as it were. On Saturday, I went to see the latest Harry Potter movie, walking to the theater and back, about 3/4 mile each way. I enjoyed the movie and the walk, but since then, I have been benched with an increase in symptoms. My neck has been extremely stiff and painful, my shoulder muscles stiff, and my calf muscles cramping into knots. I have taken it very easy, and have had a hot bath or shower every night before bed, but it hasn't helped. I have been waking up itching in the middle of the night, and I'm itchy a lot during the day...a sort of prickly heat that comes and goes. Last night I couldn't stop scratching my ankle, and when I checked, there was a raised rash. (I forgot to mention it, but I was actually waking up itching before I started the Lamictal.) Today I had splintering pain in multiple joints in addition to the neck pain. My right eyelid was twitching all day, and late in the afternoon I got a right-sided migraine. I went to bed and fell asleep briefly. I still have the migraine now...haven't taken anything for it. So far, since I started taking prophylactic B2 and CoQ10 last year, I haven't had a migraine last into a second day. I'm hoping that will be the case this time too. I haven't used my migraine medicine since last year either -- afraid that I won't be able to distinguish migraine from rebound headache if I do.
Nothing new...but that's just it, nothing new. Not better. I want to feel better.
Last night, I had a dream about escaping, in the night, by boat. The boat was a gondola, and I had one long oar. Sometimes I wish that I could really escape, even if only for a little while.
On the other hand...having my head above water allows me to see the extent of the flood, as it were. On Saturday, I went to see the latest Harry Potter movie, walking to the theater and back, about 3/4 mile each way. I enjoyed the movie and the walk, but since then, I have been benched with an increase in symptoms. My neck has been extremely stiff and painful, my shoulder muscles stiff, and my calf muscles cramping into knots. I have taken it very easy, and have had a hot bath or shower every night before bed, but it hasn't helped. I have been waking up itching in the middle of the night, and I'm itchy a lot during the day...a sort of prickly heat that comes and goes. Last night I couldn't stop scratching my ankle, and when I checked, there was a raised rash. (I forgot to mention it, but I was actually waking up itching before I started the Lamictal.) Today I had splintering pain in multiple joints in addition to the neck pain. My right eyelid was twitching all day, and late in the afternoon I got a right-sided migraine. I went to bed and fell asleep briefly. I still have the migraine now...haven't taken anything for it. So far, since I started taking prophylactic B2 and CoQ10 last year, I haven't had a migraine last into a second day. I'm hoping that will be the case this time too. I haven't used my migraine medicine since last year either -- afraid that I won't be able to distinguish migraine from rebound headache if I do.
Nothing new...but that's just it, nothing new. Not better. I want to feel better.
Last night, I had a dream about escaping, in the night, by boat. The boat was a gondola, and I had one long oar. Sometimes I wish that I could really escape, even if only for a little while.
Monday, November 22, 2010
Thanksgiving week
I made the change to Cipro on 11/21. So, now I am on Minocycline, Cipro, and Fluconazole, and off both Azithromycin and Tinidazole.
And today, the day before Thanksgiving, I met for the first time with a new psychiatrist, who started me on a very low dose of Lamictal for the mood swings.
I know the chronology of this post will seem strange, but I started it on Monday and saved it without publishing it.
And today, the day before Thanksgiving, I met for the first time with a new psychiatrist, who started me on a very low dose of Lamictal for the mood swings.
I know the chronology of this post will seem strange, but I started it on Monday and saved it without publishing it.
Monday, November 15, 2010
Calm after the storm
My mind was quiet yesterday. I even felt a feeling of peace, opening out of possibilities. So strange to have such extremes of emotion. I spent the afternoon and evening working on the border of a baby afghan and listening to a recorded book, then slept for almost eleven hours.
I talked with a lot of friends this weekend -- people from my online support group. Two of them pointed out that my mood swings have been happening roughly on a monthly basis, and suggested that they could be linked to my cycle. One of them even found me a local gynecologist, at a hospital I do not hate, who specializes in menopause, perimenopause, and bioidentical hormones. I was able to make an appointment with her for December 2.
I know that there are two other possibilities -- that the mood swings are either linked to my Borrelia infection (Borrelia symptoms flare about every 28 days) or markers of an incipent mental illness. Hard to think about either of those, since in the case of Bb the worsening mood swings would seem to suggest further progression of the infection.
I talked with a lot of friends this weekend -- people from my online support group. Two of them pointed out that my mood swings have been happening roughly on a monthly basis, and suggested that they could be linked to my cycle. One of them even found me a local gynecologist, at a hospital I do not hate, who specializes in menopause, perimenopause, and bioidentical hormones. I was able to make an appointment with her for December 2.
I know that there are two other possibilities -- that the mood swings are either linked to my Borrelia infection (Borrelia symptoms flare about every 28 days) or markers of an incipent mental illness. Hard to think about either of those, since in the case of Bb the worsening mood swings would seem to suggest further progression of the infection.
Saturday, November 13, 2010
Monday, November 8, 2010
Yesterday my symptoms were down -- pretty good mental clarity, didn't need to take a nap, less joint pain. Today my pain is up and my brain is filled with fog. I had planned to go to the grocery store this afternoon, but I can barely move. I need to write an ad to send in to student employment at Hopkins, to see if I can find a new helper.
Sunday, November 7, 2010
I seem to have stopped the Lyme herbs. I didn't do it intentionally -- just kept forgetting to order them. I ran out last week.
I think for now I am going to stay off them. I didn't notice any improvement while I was taking them (more than 3 months). Also thinking of cutting out some of the supplements. I had gotten up to around 80 pills a day -- too much.
Still on a short cycle of flares. I had the worst one in a while yesterday -- all joints extremely painful, full-on brain fog, and so exhausted that I conked out on the couch for most of the afternoon. I didn't even get dressed -- just stayed in my pajamas. Rare for me. I think I'm going to try and make a note when I have flares so I can see what the cycle actually is. I think it's somewhere between 4 and 6 days, but I can never remember by the time the next one comes.
I think for now I am going to stay off them. I didn't notice any improvement while I was taking them (more than 3 months). Also thinking of cutting out some of the supplements. I had gotten up to around 80 pills a day -- too much.
Still on a short cycle of flares. I had the worst one in a while yesterday -- all joints extremely painful, full-on brain fog, and so exhausted that I conked out on the couch for most of the afternoon. I didn't even get dressed -- just stayed in my pajamas. Rare for me. I think I'm going to try and make a note when I have flares so I can see what the cycle actually is. I think it's somewhere between 4 and 6 days, but I can never remember by the time the next one comes.
Monday, November 1, 2010
Started the double dose of minocycline yesterday with no immediate ill effect. The runs haven't been bad this weekend; I am off the azithromycin on the weekends, so if it gets worse during the week I'll know the culprit.
Also, before I forget, I stopped my cod liver oil two weeks ago, and I stopped my multivitamin yesterday (both contain D) -- both in consideration of starting the Marshall Protocol. My joint pain is way up again.
Also, before I forget, I stopped my cod liver oil two weeks ago, and I stopped my multivitamin yesterday (both contain D) -- both in consideration of starting the Marshall Protocol. My joint pain is way up again.
Thursday, October 28, 2010
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 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.
Tuesday, October 26, 2010
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"?
Thursday, October 21, 2010
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.
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.
Monday, October 11, 2010
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.
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.
Wednesday, October 6, 2010
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.
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.
Friday, October 1, 2010
Wednesday, September 29, 2010
Passed the test
The compounded azithromycin came over the weekend. I took one dose today while I was at an appointment with Dr. Z. No hives! Still waiting on the compounded minocycline. Hopefully it will come in the next day or two.
Wednesday, September 22, 2010
First visit to LLMD
On Monday, 9/20, I had my first visit with LLMD Dr. M. The appointment lasted 2 1/2 hours. Dr. M took my history, gave me a physical exam, and reviewed my Lyme testing record and what I had already done in the way of treatment. She agreed with my GP's diagnosis and treatment of my Lyme and anaplasmosis, and told me that my failure to respond most likely means that I have one or more untreated coinfections. The two she thinks I have are Babesia and Bartonella. She wants to start the Bartonella first, then phase in the Babesia treatment after several weeks. Here is her plan until my next appointment on 10/25:
Minocycline
start first -- 2x daily with food (avoid calcium when taking pill -- reduces absorption)
***when you do this, discontinue doxycycline
one week later --
Azithromycin -- M-F only, once daily with food
Tinidazole -- weekends only, twice daily
She wants me to take Mepron for Babesia, but I have to check and see if it can be compounded without fructose (I have fructose malabsorption). It will be a few days till I can start the Minocycline since my compounding pharmacist had to special order it. I will post when I start it.
tests she ordered:
from LabCorp:
I liked Dr. M. It's the first time in a very long time that I have not felt like a minority patient. Dr. M told me several times that she had seen patients with my same health issues. There were no comments about how "complicated" a patient I am, which was so nice -- those always make me feel like the doctor would rather be doing anything else but taking care of me. She has a nice manner, too -- unhurried, straightforward, and with a sense of humor.
Two days later, I'm still coping with the fallout -- greatly increased pain and fatigue from the appointment, but also the hope she offered me that I might still be able to get better. That may sound strange -- I do want to get better, more than anything, but it has been so long, and I am so tired. Having this illness is like being trapped in amber -- it's hard to keep track of the passage of time, let alone envision a future in which things are different. So, I'm just focusing on existing for now. I think the hope will come naturally if I start responding to the treatment.
Minocycline
start first -- 2x daily with food (avoid calcium when taking pill -- reduces absorption)
***when you do this, discontinue doxycycline
one week later --
Azithromycin -- M-F only, once daily with food
Tinidazole -- weekends only, twice daily
She wants me to take Mepron for Babesia, but I have to check and see if it can be compounded without fructose (I have fructose malabsorption). It will be a few days till I can start the Minocycline since my compounding pharmacist had to special order it. I will post when I start it.
tests she ordered:
from LabCorp:
- Anti-DNAse B Strep Antibodies
- Lyme Ab, Total/IgM Responses
- Thyroid Peroxidase (TPO) Ab
- Antistreptolysin O Ab
- Lyme, Western Blot, Serum
- Celiac Disease Panel
- Antinuclear Antibodies
- B12 and Folate
- Rheumatoid Arthritis Factor
- Sed Rate, Westergren
- Vitamin D, 25-Hydroxy
- Anti-SSA
- Anti-SSB
- Babesia duncani IgG & IgM antibody
- Babesia FISH (fluorescent in-situ hybridization)
I liked Dr. M. It's the first time in a very long time that I have not felt like a minority patient. Dr. M told me several times that she had seen patients with my same health issues. There were no comments about how "complicated" a patient I am, which was so nice -- those always make me feel like the doctor would rather be doing anything else but taking care of me. She has a nice manner, too -- unhurried, straightforward, and with a sense of humor.
Two days later, I'm still coping with the fallout -- greatly increased pain and fatigue from the appointment, but also the hope she offered me that I might still be able to get better. That may sound strange -- I do want to get better, more than anything, but it has been so long, and I am so tired. Having this illness is like being trapped in amber -- it's hard to keep track of the passage of time, let alone envision a future in which things are different. So, I'm just focusing on existing for now. I think the hope will come naturally if I start responding to the treatment.
Sunday, September 19, 2010
Before the beginning
Since I'm starting this blog in medias res, I thought I'd post some backdated information about my diagnosis and treatment.
Diagnosis
I was diagnosed with neuroborreliosis in January 2010 by Dr. Z, my GP. Dr. Z ordered a Comprehensive Lyme Panel from Igenex. This included
Only the Western blots were positive. I had six IgG bands and three IgM bands -- notably, not in a combination that allowed my case to be reported to the CDC, but I'll save Lyme politics for another post.
Treatment
As Dr. Z had limited experience treating Lyme, he consulted with a local LLMD, Dr. S, about my treatment. I had a Bard PowerPICC put in on 2/23/10 (happy birthday to me) and started treatment on 2/24/10.
Over the first month I had the PICC line, I developed allergic reactions to Tegaderm, Opsite, and Statlock dressings, foam tape, surgical tape, chlorohexaprep, skin prep, and to the line itself. I already knew I was allergic to latex, but this new run of allergic reactions mystified me as all the tapes and dressings were latex-free. After hours of searching the Internet looking for answers, I found the SpiroChicks blog. This is a great blog co-written by several Bay Area women who are all being treated for Lyme disease. Several of the blog's posters had had similar problems with their dressings (this is apparently common for Lymies), and they had great suggestions about alternatives. I took their advice and switched to SorbaView dressings and plain alcohol for dressing changes. I also did some research on my own and was able to switch to a Bard Groshong NXT ClearVue silicone PICC. Because of concerns about possible reactions, the line was left unsutured. This did not cause me any problems.
(Note: for anyone else who uses this information, ask in advance if your hospital stocks the lines and the dressings. Mine stocked neither. They were willing to special order the line for me, but I needed to bring my own dressing when I had the line switched.)
These measures helped a lot, but I continued to have redness and itching under my dressing. After my home health care nurse observed what looked like the beginnings of an infection around my line, I had it removed on 8/8/10. I'm now on oral antibiotics.
What I have tried so far:
Antibiotics and other medications
Rocephin IV
Doxycycline
Hydroxychloroquine PO (brand name: Plaquenil)
(compounded)
Metronidazole PO
(compounded)
Tinidazole PO
(compounded)
Fluconazole PO
(compounded)
Herbs
I'm using an herbal Lyme protocol described in a book called Healing Lyme by Stephen Buhner. In addition to the information he has provided there, he also answers questions about the protocol on Planet Thrive. I learned a lot from reading through the questions and answers.
Right now, I am taking Cat's claw, Japanese knotweed, Sarsaparilla, and Artemisia (this one is for a suspected Babesia co-infection). I decided not to try Andrographis because it seemed to be the herb that caused the most allergic reactions, and I had to stop taking Eleuthero ginseng because it kept me awake at night.
Supplements
I'm also taking several supplements. Some are recommended by Burrascano and Buhner; others were prescribed by my doctor.
nervous system:
Alpha-lipoic acid 1200 mg daily
Acetyl L-Carnitine 500 mg daily
migraine prevention:
B-2 400 mg daily
CoQ10 400 mg daily
bones & joints:
BioSil (silicone with choline): 2 capsules daily = 5 mg silicone, 100 mg choline
Vegetarian Glucosamine/MSM: 3 capsules daily = 1500 mg glucosamine, 1000 mg MSM
Calcium/Magnesium complex: 3 tablets daily = 500 mg calcium, 250 mg phosphorus, 250 mg magnesium
heart:
cod liver oil
I also take a multivitamin called GlucoBalance that is designed to stabilize blood sugar. (I have reactive hypoglycemia.) And, yes, that is a butt-load of pills to swallow every day! I have three separate pill containers for each weekday.
Diagnosis
I was diagnosed with neuroborreliosis in January 2010 by Dr. Z, my GP. Dr. Z ordered a Comprehensive Lyme Panel from Igenex. This included
- IFA, IgG/IgM/IgA
- Western blot, IgG and IgM
- multiplex PCR
Only the Western blots were positive. I had six IgG bands and three IgM bands -- notably, not in a combination that allowed my case to be reported to the CDC, but I'll save Lyme politics for another post.
Treatment
As Dr. Z had limited experience treating Lyme, he consulted with a local LLMD, Dr. S, about my treatment. I had a Bard PowerPICC put in on 2/23/10 (happy birthday to me) and started treatment on 2/24/10.
Over the first month I had the PICC line, I developed allergic reactions to Tegaderm, Opsite, and Statlock dressings, foam tape, surgical tape, chlorohexaprep, skin prep, and to the line itself. I already knew I was allergic to latex, but this new run of allergic reactions mystified me as all the tapes and dressings were latex-free. After hours of searching the Internet looking for answers, I found the SpiroChicks blog. This is a great blog co-written by several Bay Area women who are all being treated for Lyme disease. Several of the blog's posters had had similar problems with their dressings (this is apparently common for Lymies), and they had great suggestions about alternatives. I took their advice and switched to SorbaView dressings and plain alcohol for dressing changes. I also did some research on my own and was able to switch to a Bard Groshong NXT ClearVue silicone PICC. Because of concerns about possible reactions, the line was left unsutured. This did not cause me any problems.
(Note: for anyone else who uses this information, ask in advance if your hospital stocks the lines and the dressings. Mine stocked neither. They were willing to special order the line for me, but I needed to bring my own dressing when I had the line switched.)
These measures helped a lot, but I continued to have redness and itching under my dressing. After my home health care nurse observed what looked like the beginnings of an infection around my line, I had it removed on 8/8/10. I'm now on oral antibiotics.
What I have tried so far:
Antibiotics and other medications
Rocephin IV
- started 2/24/10 -- 2g daily
- switched to pulse dosing (2g daily M, T, W, Th; no meds, F, Sat, Sun) week of 5/10/10.
- reported relapse to Dr. Z on 6/2/10
- returned to daily dosing on 6/2/10
- discontinued on 6/29/10
Doxycycline
- first dose on 3/21/10 while in hospital -- 200 mg IV
- continued on 200 mg IV daily
- stopped on 4/27/10
- restarted with pulse dosing (200 mg BID, Sat & Sun only) on 7/24/10
- 7/31 & 8/1/10 -- tried PO doxycycline to see if I could tolerate it -- yes
- continued with PO doxycycline after PICC line was removed 8/8/10
Hydroxychloroquine PO (brand name: Plaquenil)
(compounded)
- started 4/23/10 -- 200 mg BID
- need to take with food -- otherwise, severe heartburn
- stopped 6/9/10 per Dr. Z after 6/8/10 labs showed thrombocytopenia. Platelets normalized with discontinuation of drug. I have in my notes that Dr. Z wanted to resume it at a lower dose if platelets normalized, but he never did this.
Metronidazole PO
(compounded)
- started on 2/28/10 -- 250 mg TID, once a week
- increased to twice a week in mid-April due to chronic yeast infection
- discontinued when I started tinidazole
Tinidazole PO
(compounded)
- started 5/9/10 -- 500 mg BID
- Works better than metronidazole for yeast infections, fewer side effects. I'm still taking this.
Fluconazole PO
(compounded)
- started 2/28/10 – 100 mg, once weekly
- increased to twice weekly 5/1/10 due to chronic yeast infection
- I’m still taking this.
LDN (low dose naltrexone)
(compounded)
- started 1/17/10 at 2 mg nightly
- increased to 4.5 mg nightly on 1/24/10
- discontinued 5/15 because of nightmares
Actos
- took once on 2/24/10 – pitting edema in hands and feet, urinary retention, increased BP, headache. Did not take again.
Welchol
- started 4/13/10 – dose after introductory taper was 3 x 625 mg BID
- discontinued 9/3/10 when samples became unavailable
Xifaxan PO
- for SIBO – 200 mg TID
- started 3/28/10; stopped week of 4/19/10.
Herbs
I'm using an herbal Lyme protocol described in a book called Healing Lyme by Stephen Buhner. In addition to the information he has provided there, he also answers questions about the protocol on Planet Thrive. I learned a lot from reading through the questions and answers.
Right now, I am taking Cat's claw, Japanese knotweed, Sarsaparilla, and Artemisia (this one is for a suspected Babesia co-infection). I decided not to try Andrographis because it seemed to be the herb that caused the most allergic reactions, and I had to stop taking Eleuthero ginseng because it kept me awake at night.
Supplements
I'm also taking several supplements. Some are recommended by Burrascano and Buhner; others were prescribed by my doctor.
nervous system:
Alpha-lipoic acid 1200 mg daily
Acetyl L-Carnitine 500 mg daily
migraine prevention:
B-2 400 mg daily
CoQ10 400 mg daily
bones & joints:
BioSil (silicone with choline): 2 capsules daily = 5 mg silicone, 100 mg choline
Vegetarian Glucosamine/MSM: 3 capsules daily = 1500 mg glucosamine, 1000 mg MSM
Calcium/Magnesium complex: 3 tablets daily = 500 mg calcium, 250 mg phosphorus, 250 mg magnesium
heart:
cod liver oil
I also take a multivitamin called GlucoBalance that is designed to stabilize blood sugar. (I have reactive hypoglycemia.) And, yes, that is a butt-load of pills to swallow every day! I have three separate pill containers for each weekday.
Starting
I have had this blog for a week now, but haven't posted. I have been worrying about getting everything perfect -- creating the best header image, making sure that I have all the link buttons I will ever want, choosing all the gadgets. I finally realized this morning that I just need to start, and the blog will evolve as I go. So, here I am.
I decided to put up this blog to track the progress of my treatment for neuroborreliosis after reading similar posts on Wellsphere by Dr. Phuli Cohan, an MD who is also a Lyme patient. I have found it difficult to find anecdotal information from patients about their treatment, and Dr. Cohan's posts really helped me feel less alone with my illness. I'm hoping that this blog will help other late-stage Lyme patients in the same way.
I was also impressed with the treatment record Dr. Cohan ended up with from her posts. My idea for this blog is to use it to track my treatment, symptoms, and reaction to the herbs and medications. Other stuff will probably worm its way in here too. I'll see how it goes, as it goes.
I decided to put up this blog to track the progress of my treatment for neuroborreliosis after reading similar posts on Wellsphere by Dr. Phuli Cohan, an MD who is also a Lyme patient. I have found it difficult to find anecdotal information from patients about their treatment, and Dr. Cohan's posts really helped me feel less alone with my illness. I'm hoping that this blog will help other late-stage Lyme patients in the same way.
I was also impressed with the treatment record Dr. Cohan ended up with from her posts. My idea for this blog is to use it to track my treatment, symptoms, and reaction to the herbs and medications. Other stuff will probably worm its way in here too. I'll see how it goes, as it goes.
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