a Baltimorean with Chronic Lyme Disease
Friday, April 29, 2011
Laughter
My laughter has come back since I started using the progesterone. From-the-belly, laugh-out-loud laughter. I’m loving it.
Sunday, April 24, 2011
Progesterone
I have now taken the two 50-mL doses of progesterone (Thursday and Friday nights) and one 100-mL dose (last night).
The progesterone definitely seems to be helping me. Prior to starting it, I had been taking small doses of Xanax (0.25 mg at a time) for symptom relief during the mid-cycle mood swings. Recently my nervous system has been on constant full alert, and my doctor had me increase the frequency of my Xanax dose to help me function. On Friday evening, I realized that I had completely forgotten to take any Xanax. The feeling of being on Red Alert was gone, my mood was lighter, and I was relaxed and smiling. This continued throughout the day yesterday. I actually got sleepy in the evening before taking my sleeping pill, something that has not happened for years, and I slept more deeply.
Yesterday I also noticed that my heart was no longer racing. When I took my pulse, my resting heart rate was down to 72. It has been in the mid-90's for the past several months.
This was all truly wonderful. The only negative was that my vaginal yeast infection (chronic on my Lyme meds, but controlled for the past few months) flared up again after the first progesterone dose.
Last night I used the first 100-mL dose of progesterone. This dose of progesterone is definitely too high.
I took my sleeping pill at 11:00 PM, and applied the progesterone cream to my left arm at 11:30. Whereas the previous two nights I was asleep by about 12:15, last night the feeling of being on Red Alert came back in full force, with anxiety and muscle spasms that started at about midnight. I was wide awake at 2:00 AM, and had to take 0.25 mg Xanax in order to get to sleep. Still, I was up till after 2:30 AM. This morning I woke up feeling drugged and foggy, and my heart rate upon waking was 89.
My conclusion from this is that the progesterone is working, but that the positive effects seem to be reversed at the higher dose. This seems counterintuitive, but I did not change the doses of any of my other medications or supplements during the past three days, so I can't ascribe the reversal to anything else.
I am doing to drop back down to the 50-mL dose and, if the initial positive response returns, I will stay on that dose for the rest of this cycle. The Red Alert feeling is not subtle, and I figure I can always add a few mLs of extra cream in a morning dose if needed.
What I have learned from this experience:
The progesterone definitely seems to be helping me. Prior to starting it, I had been taking small doses of Xanax (0.25 mg at a time) for symptom relief during the mid-cycle mood swings. Recently my nervous system has been on constant full alert, and my doctor had me increase the frequency of my Xanax dose to help me function. On Friday evening, I realized that I had completely forgotten to take any Xanax. The feeling of being on Red Alert was gone, my mood was lighter, and I was relaxed and smiling. This continued throughout the day yesterday. I actually got sleepy in the evening before taking my sleeping pill, something that has not happened for years, and I slept more deeply.
Yesterday I also noticed that my heart was no longer racing. When I took my pulse, my resting heart rate was down to 72. It has been in the mid-90's for the past several months.
This was all truly wonderful. The only negative was that my vaginal yeast infection (chronic on my Lyme meds, but controlled for the past few months) flared up again after the first progesterone dose.
Last night I used the first 100-mL dose of progesterone. This dose of progesterone is definitely too high.
I took my sleeping pill at 11:00 PM, and applied the progesterone cream to my left arm at 11:30. Whereas the previous two nights I was asleep by about 12:15, last night the feeling of being on Red Alert came back in full force, with anxiety and muscle spasms that started at about midnight. I was wide awake at 2:00 AM, and had to take 0.25 mg Xanax in order to get to sleep. Still, I was up till after 2:30 AM. This morning I woke up feeling drugged and foggy, and my heart rate upon waking was 89.
My conclusion from this is that the progesterone is working, but that the positive effects seem to be reversed at the higher dose. This seems counterintuitive, but I did not change the doses of any of my other medications or supplements during the past three days, so I can't ascribe the reversal to anything else.
I am doing to drop back down to the 50-mL dose and, if the initial positive response returns, I will stay on that dose for the rest of this cycle. The Red Alert feeling is not subtle, and I figure I can always add a few mLs of extra cream in a morning dose if needed.
What I have learned from this experience:
- I may be related to Goldilocks.
- Hormones affect a lot of processes in the human body, and small dose changes can make a BIG difference.
Tuesday, April 19, 2011
Insane Zombie Golem Revealed to be Powered by Hormones!
It has been occurring to me lately that this blog is pretty grim. If you're following it, I'm sorry about that. There are things in my life that are good, the best one being my canary, Lofty, who is singing as I type. He has made me a member of his flock. Having him living here with me brings me a great deal of joy.
Now, on to today's story.
I started BHRT 5 days ago. I was concerned about starting on estrogen right away -- my estrogen is indeed extremely low, but my progesterone is even lower, so I’m also extremely estrogen dominant. But my pharmacist wanted to stick as closely as possible to a natural schedule, so I agreed.
Turns out that my fears were well-founded. Even though my internist increased my dose of sleeping medication by 50% last week to try to get me out of the exhaustion trough I’ve been stuck in, with each passing day of estrogen it has had less and less effect. I got 9 hours of sleep the first night (blissful), then 8 1/2 the next night, then 8, then 7 1/2, then 7. I’ve been waking up with the sleeping meds still active, totally wired and unable to go back to sleep, and staggering around like a zombie. As long as the sleeping pill is still working, I have no short term memory at all, so it has made for some interesting situations. By the way, it still hurts to breathe all the time, so the combo has been extra delightful.
Yesterday I had a full-blown meltdown with huge anxiety and sobbing that required more Xanax. I realized that if this was happening on day 5 of my cycle, my mid-cycle mood swing this month might be a serious problem. I called the pharmacist today and told her what had happened, and she took me off the estrogen right away. She’s also going to start me on progesterone 2 days earlier than she had originally planned -- I explained the pattern of my mood swings again, and she agreed that it wouldn’t help a day 12 mood swing to start progesterone that evening. We’re going to try adding the estrogen back in next cycle, but at a lower dose.
So -- if I have seemed flaky, cranky, psychotic, large and green, or otherwise not myself, please hang in there for a couple more days till I can start progesterone.
Now, on to today's story.
I started BHRT 5 days ago. I was concerned about starting on estrogen right away -- my estrogen is indeed extremely low, but my progesterone is even lower, so I’m also extremely estrogen dominant. But my pharmacist wanted to stick as closely as possible to a natural schedule, so I agreed.
Turns out that my fears were well-founded. Even though my internist increased my dose of sleeping medication by 50% last week to try to get me out of the exhaustion trough I’ve been stuck in, with each passing day of estrogen it has had less and less effect. I got 9 hours of sleep the first night (blissful), then 8 1/2 the next night, then 8, then 7 1/2, then 7. I’ve been waking up with the sleeping meds still active, totally wired and unable to go back to sleep, and staggering around like a zombie. As long as the sleeping pill is still working, I have no short term memory at all, so it has made for some interesting situations. By the way, it still hurts to breathe all the time, so the combo has been extra delightful.
Yesterday I had a full-blown meltdown with huge anxiety and sobbing that required more Xanax. I realized that if this was happening on day 5 of my cycle, my mid-cycle mood swing this month might be a serious problem. I called the pharmacist today and told her what had happened, and she took me off the estrogen right away. She’s also going to start me on progesterone 2 days earlier than she had originally planned -- I explained the pattern of my mood swings again, and she agreed that it wouldn’t help a day 12 mood swing to start progesterone that evening. We’re going to try adding the estrogen back in next cycle, but at a lower dose.
So -- if I have seemed flaky, cranky, psychotic, large and green, or otherwise not myself, please hang in there for a couple more days till I can start progesterone.
Hitting bottom
A thing happened. I have been processing it, but I think I’m ready to share.
One of my Lyme symptoms is air hunger. Until Monday 4/11, it was intermittent and only with exertion. The exertion didn’t have to be large -- I’d get it if I climbed the stairs from my main floor to my second floor -- but sitting or lying down always made breathing easier again within a few minutes. It has become more noticeable since I went off Lyme antibiotics in January. On Monday, though, the air hunger became constant, and since then every breath has hurt.
On Thursday, I decided that I should call my Lyme doctor, as she only works M-Th. She said that it was very probably either an exacerbation of the Lyme (since we are only treating the Babesia right now) or a rare but known side effect of the Malarone, but there was a tiny chance that it was a pulmonary embolism and I should go to the ER and get it checked out. I told her that I would seriously rather die than go to the ER ever again on my own with a Lyme-related complaint, but that I would call my GP and see if she would meet me there.
My GP agreed that I should not go to the ER. Since I am allergic to IV contrast, she ordered a stat venous perfusion study of my lungs to rule out pulmonary embolism. The only catch was that her hospital is the one at which, the one time I went there seriously ill at the request of a physician, they tried to have me committed. I planned to follow the protocol my therapist and I arranged after that incident, which was to call her on her cell phone so she could come and assist me if necessary. I took Xanax as soon as I got in the cab, but realized halfway to the hospital that I had left my wallet containing my insurance cards, money, and therapist’s number at home. (The number is now in my cell phone.)
My GP met me at the entrance of the physicians’ building with a wheelchair, made copies of the insurance information which she had on file, checked my O2 saturation, and called my therapist (they are friends). Then she wheeled me over to the hospital and got me admitted immediately. She told the admissions person that I had had a very bad experience at that hospital and that no test or treatment was to be given outside of her orders. She stayed for the mandatory chest x-ray, then left me to attend to another emergency patient with a promise to return to get the scan read and take me back.
I was so terrified of being there, even with Xanax on board, but the people who did the test were nice and I got through it. My doctor did come back to get me, and she drew labs to check my SED rate and CRP and electrolytes plus other basic stuff. My inflammatory markers are up again. The VP scan was normal, and my O2 saturation was 99, which ruled out airway issues or emboli. Unfortunately, that hasn’t made it any easier to breathe.
My GP increased my sleeping medication, and Thursday night I was able to sleep for almost 9 hours, which got me from Zombie to just severely exhausted. What is hitting me really hard, though, is that this means that the Lyme is definitely back, and I am not physically strong enough anymore to withstand treating both infections at once. My Bartonella has flared back up again too, and the thrush infection isn’t responding to antifungals.
The current thinking about the constant air hunger is that it was exacerbated by the physiological stress of the painful ultrasound on Monday, and that the chest pain is costochondritis. The pain is on both sides of my upper sternum, about 2 ribs down from the top, just where the ribs and the sternum meet. Air hunger in diseases like Lyme and CFS is thought by some researchers to be caused by nitric oxide induced mitochondrial dysfunction, so I tried to read up on that a little bit over the weekend, but I was too tired for it to sink in. Hopefully soon I'll be able to return to it with a clearer head.
One of my Lyme symptoms is air hunger. Until Monday 4/11, it was intermittent and only with exertion. The exertion didn’t have to be large -- I’d get it if I climbed the stairs from my main floor to my second floor -- but sitting or lying down always made breathing easier again within a few minutes. It has become more noticeable since I went off Lyme antibiotics in January. On Monday, though, the air hunger became constant, and since then every breath has hurt.
On Thursday, I decided that I should call my Lyme doctor, as she only works M-Th. She said that it was very probably either an exacerbation of the Lyme (since we are only treating the Babesia right now) or a rare but known side effect of the Malarone, but there was a tiny chance that it was a pulmonary embolism and I should go to the ER and get it checked out. I told her that I would seriously rather die than go to the ER ever again on my own with a Lyme-related complaint, but that I would call my GP and see if she would meet me there.
My GP agreed that I should not go to the ER. Since I am allergic to IV contrast, she ordered a stat venous perfusion study of my lungs to rule out pulmonary embolism. The only catch was that her hospital is the one at which, the one time I went there seriously ill at the request of a physician, they tried to have me committed. I planned to follow the protocol my therapist and I arranged after that incident, which was to call her on her cell phone so she could come and assist me if necessary. I took Xanax as soon as I got in the cab, but realized halfway to the hospital that I had left my wallet containing my insurance cards, money, and therapist’s number at home. (The number is now in my cell phone.)
My GP met me at the entrance of the physicians’ building with a wheelchair, made copies of the insurance information which she had on file, checked my O2 saturation, and called my therapist (they are friends). Then she wheeled me over to the hospital and got me admitted immediately. She told the admissions person that I had had a very bad experience at that hospital and that no test or treatment was to be given outside of her orders. She stayed for the mandatory chest x-ray, then left me to attend to another emergency patient with a promise to return to get the scan read and take me back.
I was so terrified of being there, even with Xanax on board, but the people who did the test were nice and I got through it. My doctor did come back to get me, and she drew labs to check my SED rate and CRP and electrolytes plus other basic stuff. My inflammatory markers are up again. The VP scan was normal, and my O2 saturation was 99, which ruled out airway issues or emboli. Unfortunately, that hasn’t made it any easier to breathe.
My GP increased my sleeping medication, and Thursday night I was able to sleep for almost 9 hours, which got me from Zombie to just severely exhausted. What is hitting me really hard, though, is that this means that the Lyme is definitely back, and I am not physically strong enough anymore to withstand treating both infections at once. My Bartonella has flared back up again too, and the thrush infection isn’t responding to antifungals.
The current thinking about the constant air hunger is that it was exacerbated by the physiological stress of the painful ultrasound on Monday, and that the chest pain is costochondritis. The pain is on both sides of my upper sternum, about 2 ribs down from the top, just where the ribs and the sternum meet. Air hunger in diseases like Lyme and CFS is thought by some researchers to be caused by nitric oxide induced mitochondrial dysfunction, so I tried to read up on that a little bit over the weekend, but I was too tired for it to sink in. Hopefully soon I'll be able to return to it with a clearer head.
Thursday, April 14, 2011
Sinking
Things have been bad.
2 weeks after the adverse reaction to Omnicef, I'm still having diarrhea every day. It's better than it was at the beginning -- I was able to go off Lotronex again after about a week -- but I'm still having a very hard time figuring out what is safe to eat. Basically, nothing is. My whole gut is exquisitely tender, and I have been reacting even to foods that are normally safe for me.
I've also been having more trouble sleeping since Dr. L increased my Malarone dose last month. I'm not sure if it's a die-off reaction, or a change in my rate of liver metabolism, or both, but my reliable sleeping pill (Ambien CR) has suddenly become less effective. I have had the same experience with other medications, and the Ambien started working perfectly again when I finished the other meds, so I suspect the Malarone. The issue this time, though, is that I won't be going off the Malarone for some time. In fact, Dr. L has given me a small dose of Mepron to supplement it with, so if anything I expect the sleep problems to get worse. She also doubled my artemisinin and added oregano oil to my regimen since the thrush infection isn't responding well to the Nystatin.
I'm not due to start the Mepron for another 10 days, but with the artemisinin and oregano oil my sleep has already gotten worse again. I was getting 6 1/2 - 7 hours a night before the changes, and last night I got 4. Adjusting my Ambien dose does help; I have been cutting my pills in half so I can take a piece each time I wake up, and two nights ago I took an extra half a pill when I woke for the third time. It's just worrying to need that much medication to sleep. I can't do this on a regular basis without running short of medication, so I called Dr. K to ask about increasing my Ambien dose.
from 4/7: I hit an all-time mobility low today. Around noon, I went outside to put a letter in the mailbox and saw one of my favorite neighbors down at the other end of the block. I walked down there to say hello. I chatted for less than 5 minutes, then walked back. By the time I got home, I was breathless, and by 2:00 this afternoon, I could no longer keep sitting up in my desk chair and had to lie down. I just keep feeling more and more exhausted, and I can’t go to sleep. (Note: I'm having air hunger and chest pain more frequently and with less exertion.)
On 4/10, I typed up Michelle's notes from the 4/5 appointment with Dr. L. The right side of my face suddenly went numb, and I had bad paresthesias in my neck and back at the same time.
On 4/11, I doubled my artemisinin dose after checking with Dr. L. She also instructed me to take it between meals. (Before, she had had me taking it with the Malarone.)
On 4/12, my eyes were going in and out of focus all day; feeling really ill, with severe nausea, gut pain, and heartburn all day. I had an adverse reaction to my morning nut muffin (home-made, no change in recipe or ingredients).
On 4/13, my helper took me to buy some oil of oregano liquid. The one I decided to try is Now Foods Oil of Oregano Blend. I chose it because it didn't appear to contain any alcohol and was recommended by several of my friends with experience in herbal medicine. I chose liquid over capsules because I could titrate it more slowly and because I could hold it in my mouth before swallowing (Nystatin tablets don't treat oral thrush). Note: not miscible in water; taking in oil is better. Took second dose in 1 tsp of cod liver oil.
On 4/14, I started BHRT. Bi-est 1 mg, days 1-12, and Progesterone 100 mg, days 12-24.
My cognitive problems have also gotten worse. I'm having trouble with word finding, skipping chunks of text when I read without realizing it, typing letters that aren't the ones I intend.
I'm not sure what to do. I don't think I have ever felt so sick. At the same time, all the Lyme symptoms are returning. Very discouraging, since I know I absolutely couldn't tolerate an additional antibiotic right now.
2 weeks after the adverse reaction to Omnicef, I'm still having diarrhea every day. It's better than it was at the beginning -- I was able to go off Lotronex again after about a week -- but I'm still having a very hard time figuring out what is safe to eat. Basically, nothing is. My whole gut is exquisitely tender, and I have been reacting even to foods that are normally safe for me.
I've also been having more trouble sleeping since Dr. L increased my Malarone dose last month. I'm not sure if it's a die-off reaction, or a change in my rate of liver metabolism, or both, but my reliable sleeping pill (Ambien CR) has suddenly become less effective. I have had the same experience with other medications, and the Ambien started working perfectly again when I finished the other meds, so I suspect the Malarone. The issue this time, though, is that I won't be going off the Malarone for some time. In fact, Dr. L has given me a small dose of Mepron to supplement it with, so if anything I expect the sleep problems to get worse. She also doubled my artemisinin and added oregano oil to my regimen since the thrush infection isn't responding well to the Nystatin.
I'm not due to start the Mepron for another 10 days, but with the artemisinin and oregano oil my sleep has already gotten worse again. I was getting 6 1/2 - 7 hours a night before the changes, and last night I got 4. Adjusting my Ambien dose does help; I have been cutting my pills in half so I can take a piece each time I wake up, and two nights ago I took an extra half a pill when I woke for the third time. It's just worrying to need that much medication to sleep. I can't do this on a regular basis without running short of medication, so I called Dr. K to ask about increasing my Ambien dose.
from 4/7: I hit an all-time mobility low today. Around noon, I went outside to put a letter in the mailbox and saw one of my favorite neighbors down at the other end of the block. I walked down there to say hello. I chatted for less than 5 minutes, then walked back. By the time I got home, I was breathless, and by 2:00 this afternoon, I could no longer keep sitting up in my desk chair and had to lie down. I just keep feeling more and more exhausted, and I can’t go to sleep. (Note: I'm having air hunger and chest pain more frequently and with less exertion.)
On 4/10, I typed up Michelle's notes from the 4/5 appointment with Dr. L. The right side of my face suddenly went numb, and I had bad paresthesias in my neck and back at the same time.
On 4/11, I doubled my artemisinin dose after checking with Dr. L. She also instructed me to take it between meals. (Before, she had had me taking it with the Malarone.)
On 4/12, my eyes were going in and out of focus all day; feeling really ill, with severe nausea, gut pain, and heartburn all day. I had an adverse reaction to my morning nut muffin (home-made, no change in recipe or ingredients).
On 4/13, my helper took me to buy some oil of oregano liquid. The one I decided to try is Now Foods Oil of Oregano Blend. I chose it because it didn't appear to contain any alcohol and was recommended by several of my friends with experience in herbal medicine. I chose liquid over capsules because I could titrate it more slowly and because I could hold it in my mouth before swallowing (Nystatin tablets don't treat oral thrush). Note: not miscible in water; taking in oil is better. Took second dose in 1 tsp of cod liver oil.
On 4/14, I started BHRT. Bi-est 1 mg, days 1-12, and Progesterone 100 mg, days 12-24.
My cognitive problems have also gotten worse. I'm having trouble with word finding, skipping chunks of text when I read without realizing it, typing letters that aren't the ones I intend.
I'm not sure what to do. I don't think I have ever felt so sick. At the same time, all the Lyme symptoms are returning. Very discouraging, since I know I absolutely couldn't tolerate an additional antibiotic right now.
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