I guess the variation in symptoms is better than having them all the time, all at once. Being lightheaded comes and goes; today happens to be a day where it's here. I also feel somewhat feverish today. Yesterday I had a sore throat. I don't know if that's related or a totally different issue. It's all a guessing game right now!
On Tuesday, I have an appointment with a local Lyme specialist. The initial place I went is almost an hour away, so if I can find someone more local to treat me, it would be very helpful! Worst case scenario, my next follow up with the initial doctor is on Wednesday. Hopefully by the end of the week I will have a full treatment plan in place.
Saturday, January 29, 2011
Tuesday, January 25, 2011
Too good to be true
The lightheadedness is back today, along with a fever. I happened to have an appointment with my primary doc this morning, and she confirmed that all of this could be from the antibiotic. She said to expect ups and downs from the "herxing", and new symptoms may appear also. As long as the end result is better overall, I'll just have to wait it out. It wasn't a short process to get to this point, and I doubt it will be a short process to rid my body of all of this.
Monday, January 24, 2011
Progress report: The good and the bad
I've been on the oral antibiotic for about 4 days now. On the 3rd day, I noticed a drastic decrease in my lightheadedness. It's still there, but much less disruptive than it had been for the previous 2 weeks. That's the good news.
The bad news is that my neck/back pain has been much worse than usual. Every muscle is tight. I have pain shooting down my left arm. Thankfully my PT was able to help lessen the pain today. Hopefully it will go away soon. I know that it's possible to have a "herximer reaction" to the medication, and I'm guessing that is what I'm experiencing. "Herxing" is when you're killing off the bacteria faster than your body can eliminate it from your system. This causes you to feel worse before feeling better.
If the end result is that I will ultimately feel better, I'll work through this for a little while. At least I can function better when I'm not so lightheaded!
The bad news is that my neck/back pain has been much worse than usual. Every muscle is tight. I have pain shooting down my left arm. Thankfully my PT was able to help lessen the pain today. Hopefully it will go away soon. I know that it's possible to have a "herximer reaction" to the medication, and I'm guessing that is what I'm experiencing. "Herxing" is when you're killing off the bacteria faster than your body can eliminate it from your system. This causes you to feel worse before feeling better.
If the end result is that I will ultimately feel better, I'll work through this for a little while. At least I can function better when I'm not so lightheaded!
Friday, January 21, 2011
A little ray of sunshine
Yesterday was the follow-up with the Lyme specialist. I was kind of disappointed to find out that my test results didn't give a concrete answer, considering if I have Lyme, at least it's treatable. But it seems that Lyme is such a tricky disease that you can't base diagnosis on test results alone. Once it becomes cronic (if it's not caught in the first few weeks), it is less likely that the antibodies will show up in blood tests. Thankfully, the doctor was interpreting my results along with my history and symptoms. He is confident that I DO have Lyme, and that I should respond to treatment. The one marker that keeps showing up as positive is a Lyme-specific marker, meaning that there is no other bacteria that would cause this positive result. Some of the other markers could show as positive if you have other illnesses - everything from syphillis to gingivitis. Considering I have a marker that only indicates Lyme, the doctor is willing to treat me.
So the good news is that I'm being treated. The bad news is that this may require 1 to 2 months of antibiotic treatment. For now, he started me on an oral antibiotic and he drew some more blood. I will go back in 2 weeks to discuss how the antibiotic is working (it's already doing a number on my stomach!) and to figure out the plan from there.
Here's to hoping that I've found the right answer this time!
So the good news is that I'm being treated. The bad news is that this may require 1 to 2 months of antibiotic treatment. For now, he started me on an oral antibiotic and he drew some more blood. I will go back in 2 weeks to discuss how the antibiotic is working (it's already doing a number on my stomach!) and to figure out the plan from there.
Here's to hoping that I've found the right answer this time!
Wednesday, January 19, 2011
Is there a light at the end of the tunnel?
The last few weeks have been nothing short of frustrating. I've been lightheaded more often than not, with the ear pain and tinnitus increasing as well. The lightheaded feeling is very awkward. It's almost like I'm floating, and my head goes numb in flashes. The more severe flashes are actually making even my hands feel numb. It's very bad in the mornings, seems to lessen in the afternoons, and comes back full force in the evenings. It's actually scary to drive when I feel like this.
I called the Lyme specialist earlier in the week and they hadn't received my test results yet. So today I turned to my neurologist, hoping that SOMEONE would have an answer or at least a way to deal with this. The neuro had nothing. Her only suggestion was a spinal tap to check for Lyme. Yikes! She suggested that I call the Lyme doc again and see if there is any way to put a rush on my tests given my symptoms of late.
Thankfully, I called at just the right time. It looks like my results are in, and the doc had a list of 5 people who were trying to move their appointments up. There just happened to be a cancellation for tomorrow afternoon, and since I called (before they got a chance to decide which of the 5 people they should call first) I got the appointment.
So, cross your fingers, toes, whatever, and hope that I can finally get some answers tomorrow. I need to start moving in the right direction, quickly!
I called the Lyme specialist earlier in the week and they hadn't received my test results yet. So today I turned to my neurologist, hoping that SOMEONE would have an answer or at least a way to deal with this. The neuro had nothing. Her only suggestion was a spinal tap to check for Lyme. Yikes! She suggested that I call the Lyme doc again and see if there is any way to put a rush on my tests given my symptoms of late.
Thankfully, I called at just the right time. It looks like my results are in, and the doc had a list of 5 people who were trying to move their appointments up. There just happened to be a cancellation for tomorrow afternoon, and since I called (before they got a chance to decide which of the 5 people they should call first) I got the appointment.
So, cross your fingers, toes, whatever, and hope that I can finally get some answers tomorrow. I need to start moving in the right direction, quickly!
Friday, January 14, 2011
It's all so confusing!
All of my symptoms are related to one another, and every diagnosis that I've received overlaps with the last one. The problem is that I can't seem to get to the root cause of all of this and find a treatment that will make it better. I don't really care what name it goes by. I just need to find the underlying common denominator and treat THAT, instead of treating each individual symptom which has been getting me nowhere for the last several years.
On Monday I had a consultation with a Lyme specialist. It was an interesting appointment, and the doctor explained a lot of things. Many of my previous diagnoses can be related to Lyme, including POTS, autoimmune hypothyroid, and IBS. One interesting thing that the doctor pointed out is that Fibromyalgia is "pain without inflammation," while Lyme would include inflammation. I definitely have inflammation. Maybe that would explain why I didn't respond to the FM medications at all.
The doctor also confirmed what I had read about my Lyme blood test results - that the band I tested positive for is only indicative of Lyme, even though it is not a technical "positive" result based on the CDC criteria. Multiple bands need to show as positive for a technically positive result, which doesn't really make much sense considering many of the other bands could be positive for reasons other than Lyme. Some of them show positive in a majority of the population even though most people don't have Lyme, and some could be positive if you have gingivitis! Another interesting fact is that once Lyme becomes chronic (not a brand new infection), it is no longer in your bloodstream. It moves into your cells, since that is what it feeds off of. Again, it makes sense that someone who has a blood test shortly after noticing a tick bite will test positive with no question, but someone with an advanced stage of Lyme will not show positive on a blood test.
For now, the doctor drew more blood to retest with more sensitive tests. I'll have to wait for those results before he can decide if he'll treat me for Lyme or not. In the mean time, he also mentioned something about Vitamin D in autoimmune disorders, and that supplementation may actually be BAD for you. So, I did my own research and came across some articles explaining why. It's difficult to explain, but essentially your body produces what it needs, and additional Vitamin D can act to suppress the immune system, further decreasing your body's ability to fight off whatever it encounters. In my case, it makes a lot of sense. It explains why my body has reacted negatively every time I've tried to supplement with Vitamin D. It may not be the most accepted answer in the medical community, but I listen to my body and consider that my own research.
Today I'm home sick. (Surprised? Didn't think so.) I've been having awful bouts with ear pain in the left ear, and migraines on top of that. This all needs to STOP! I'm doing absolutely everything I can to get myself better, and instead I feel like I'm only getting worse. Well, at least I know that I haven't found the answer yet. The search continues.
On Monday I had a consultation with a Lyme specialist. It was an interesting appointment, and the doctor explained a lot of things. Many of my previous diagnoses can be related to Lyme, including POTS, autoimmune hypothyroid, and IBS. One interesting thing that the doctor pointed out is that Fibromyalgia is "pain without inflammation," while Lyme would include inflammation. I definitely have inflammation. Maybe that would explain why I didn't respond to the FM medications at all.
The doctor also confirmed what I had read about my Lyme blood test results - that the band I tested positive for is only indicative of Lyme, even though it is not a technical "positive" result based on the CDC criteria. Multiple bands need to show as positive for a technically positive result, which doesn't really make much sense considering many of the other bands could be positive for reasons other than Lyme. Some of them show positive in a majority of the population even though most people don't have Lyme, and some could be positive if you have gingivitis! Another interesting fact is that once Lyme becomes chronic (not a brand new infection), it is no longer in your bloodstream. It moves into your cells, since that is what it feeds off of. Again, it makes sense that someone who has a blood test shortly after noticing a tick bite will test positive with no question, but someone with an advanced stage of Lyme will not show positive on a blood test.
For now, the doctor drew more blood to retest with more sensitive tests. I'll have to wait for those results before he can decide if he'll treat me for Lyme or not. In the mean time, he also mentioned something about Vitamin D in autoimmune disorders, and that supplementation may actually be BAD for you. So, I did my own research and came across some articles explaining why. It's difficult to explain, but essentially your body produces what it needs, and additional Vitamin D can act to suppress the immune system, further decreasing your body's ability to fight off whatever it encounters. In my case, it makes a lot of sense. It explains why my body has reacted negatively every time I've tried to supplement with Vitamin D. It may not be the most accepted answer in the medical community, but I listen to my body and consider that my own research.
Today I'm home sick. (Surprised? Didn't think so.) I've been having awful bouts with ear pain in the left ear, and migraines on top of that. This all needs to STOP! I'm doing absolutely everything I can to get myself better, and instead I feel like I'm only getting worse. Well, at least I know that I haven't found the answer yet. The search continues.
Thursday, January 6, 2011
More bad news, or a breakthrough?
On Tuesday, I had a follow up appointment with my ENT. We were following up on the tinnitus in my left ear, since about a month ago he had put me on a mild diuretic hoping to reduce any fluid in my ear. I realized fairly quickly that I wasn't going to be able to tolerate the diuretic, but I gave it 3 weeks. Not only did it make me feel completely dehydrated (duh), it was also lowering my blood pressure and making me dizzy. Considering I already take medication to RAISE my blood pressure, I knew this wasn't going to be a good choice unless I was seeing a dramatic difference in the tinnitus.
I saw no difference in the ringing after 3 weeks, so I stopped taking the medication. At Tuesday's appointment, we discussed the options from here. The first thing the doctor wanted to do was test my hearing again to see if there has been any change. I was skeptical at the need for this because I feel like my hearing is fine, but the damn ringing needs to stop, and the occasional pain and dizziness, too. Anyway, I reluctantly agreed to come back the next day for the hearing test (I had already waited an hour and 15 minutes to see the doctor, and I had a migraine, so I didn't want to do the test that day). The doctor promised to call me the day after the hearing test (which would be today) to decide on the options we had discussed.
The options were: 1) a shot of a steroid in my ear - not very appealing to me, especially since the oral steroid hadn't made any difference; 2) a much stronger diuretic which is shorter lasting, with hourly hearing tests to see if the diuretic makes any difference; 3) a trial of doxycycline, which is an antibiotic used to treat Lyme disease.
The hearing test was at 1:00 yesterday. At 5:05, as I was getting in my car to leave work, the doctor called me on my cell phone with the results. He (and I) was surprised to see that in just 2 months since my last hearing test, the hearing in my left ear had in fact declined. Don't get me wrong, it's not a dramatic difference or anything that I would notice. But the difference between my ears has increased.
The doctor's suggestion was to go with the trial of doxycycline. Based on my collection of symptoms, including the tinnitus and hearing decline, a diagnosis of Lyme makes a lot of sense - but like everything else in my medical history, the test results don't confirm this 100%. While I agree that I might benefit from the antibiotic, I actually want to be sure that it is the APPROPRIATE treatment if I do have Lyme. Coincidentally, I have an appointment to see a Lyme specialist on Monday. I mentioned this to the ENT and asked if he minded if I opted to wait to see what the specialist has to say. He was fine with that, and said that if they opt not to treat me, he would still like me to try at least 2 weeks of the antibiotic so I should call him next week and let him know what they say. He also asked me to make sure I talk to them about the decline in hearing.
So, while it's not great news that my hearing is declining, I am really hoping that this is putting me on the right track for diagnosis and proper treatment. Things only seem to be getting worse lately so this could be my silver lining. I'm a bit anxious for my consultation on Monday afternoon!
I saw no difference in the ringing after 3 weeks, so I stopped taking the medication. At Tuesday's appointment, we discussed the options from here. The first thing the doctor wanted to do was test my hearing again to see if there has been any change. I was skeptical at the need for this because I feel like my hearing is fine, but the damn ringing needs to stop, and the occasional pain and dizziness, too. Anyway, I reluctantly agreed to come back the next day for the hearing test (I had already waited an hour and 15 minutes to see the doctor, and I had a migraine, so I didn't want to do the test that day). The doctor promised to call me the day after the hearing test (which would be today) to decide on the options we had discussed.
The options were: 1) a shot of a steroid in my ear - not very appealing to me, especially since the oral steroid hadn't made any difference; 2) a much stronger diuretic which is shorter lasting, with hourly hearing tests to see if the diuretic makes any difference; 3) a trial of doxycycline, which is an antibiotic used to treat Lyme disease.
The hearing test was at 1:00 yesterday. At 5:05, as I was getting in my car to leave work, the doctor called me on my cell phone with the results. He (and I) was surprised to see that in just 2 months since my last hearing test, the hearing in my left ear had in fact declined. Don't get me wrong, it's not a dramatic difference or anything that I would notice. But the difference between my ears has increased.
The doctor's suggestion was to go with the trial of doxycycline. Based on my collection of symptoms, including the tinnitus and hearing decline, a diagnosis of Lyme makes a lot of sense - but like everything else in my medical history, the test results don't confirm this 100%. While I agree that I might benefit from the antibiotic, I actually want to be sure that it is the APPROPRIATE treatment if I do have Lyme. Coincidentally, I have an appointment to see a Lyme specialist on Monday. I mentioned this to the ENT and asked if he minded if I opted to wait to see what the specialist has to say. He was fine with that, and said that if they opt not to treat me, he would still like me to try at least 2 weeks of the antibiotic so I should call him next week and let him know what they say. He also asked me to make sure I talk to them about the decline in hearing.
So, while it's not great news that my hearing is declining, I am really hoping that this is putting me on the right track for diagnosis and proper treatment. Things only seem to be getting worse lately so this could be my silver lining. I'm a bit anxious for my consultation on Monday afternoon!
Monday, January 3, 2011
It's a new year
I am hoping for great things in 2011. So far, I'm not off to a great start. After being home with my sick daughter over Christmas weekend, we changed our travel plans just in time for me to get sick. It started with a cough, which was annoying at best. That kept me up at night so it was followed by a sore throat and ear pain. A few migraines were thrown into the mix, plus working, finishing shopping, and traveling and staying up late.
So, here I am with all of the aforementioned ailments, and feeling feverish. The good news is that I had a scheduled "family sick day" today to take Sean to an appointment, but it still required getting up early, getting the kids ready and off to school, and then getting to Sean's appointment on time. I've been sitting in the waiting room wishing I could just go to sleep.
It's been a week since I've been to physical therapy and I have an appointment today that I really need. But once I get home I'm not sure I'll be able to drag myself back out of bed to get there. And if I can drag myself out, I'm wondering if
So, here I am with all of the aforementioned ailments, and feeling feverish. The good news is that I had a scheduled "family sick day" today to take Sean to an appointment, but it still required getting up early, getting the kids ready and off to school, and then getting to Sean's appointment on time. I've been sitting in the waiting room wishing I could just go to sleep.
It's been a week since I've been to physical therapy and I have an appointment today that I really need. But once I get home I'm not sure I'll be able to drag myself back out of bed to get there. And if I can drag myself out, I'm wondering if
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