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
No comments:
Post a Comment