I read an article in Vogue magazine today about Lyme disease. You would think that any news is good press for such a misunderstood illness. But this article just contributed to the confusion. It was basically an article about a woman with chronic Lyme. Then the article denied that there is any such thing as chronic Lyme. I hate to read things like this. For the last 2+ months, I sit in a room for over an hour every day with LIVING PROOF of chronic Lyme disease. Not just me, but 20 other patients.
On the other hand, the doctor's office loaned me a copy of the documentary "Under Our Skin" which follows several Lyme patients as well as several doctors' struggles with treating Lyme and maintaining their medical licenses. Another sad state of affairs. However, if you ever wanted to know some of what I've been going through, this documentary is not to be missed. I'll be buying a copy and will be happy to loan it out to anyone who wants to understand.
Update: There is now a 2nd movie, Under Our Skin 2: Emergence.
Monday, April 25, 2011
Sunday, April 24, 2011
Good and bad
It's been a while since I've had time to write. Bad news first...
I had the surgery on my neck and had a 1 in 100 complication. At the end of the surgery, I had a dural leak - a leak of spinal fluid. Instead of being up and about the same day, I had to be flat on my back for 24 hours to allow the leak to heal. I spent the time in the hospital, only being allowed to raise the bed 30 degrees to eat. Thankfully, by 3 days after the surgery I was feeling fine. No positional headaches, which is the sign of the leak.
For the good news, the surgery was successful. I noticed an immediate difference, and could even separate out the pain from the surgery from my usual neck pain. The surgeon said that my nerves at C5/6 were extremely compressed so he expected me to feel worse before feeling better since he was messing around with everything in the area. The right side of my neck felt like I was beaten up after surgery, which was the inflammation from the surgery. My usual pain is more of a pinching feeling. Now, over a week later, I still need to rest my neck by the end of the day but it is so much better.
In other news, I only have 2 more IV treatments. I am really looking forward to having the PICC taken out. I will still have about 10 more days on the last oral antibiotic, but hopefully I will start to see more improvement once the main treatment is done. Time will tell!
I had the surgery on my neck and had a 1 in 100 complication. At the end of the surgery, I had a dural leak - a leak of spinal fluid. Instead of being up and about the same day, I had to be flat on my back for 24 hours to allow the leak to heal. I spent the time in the hospital, only being allowed to raise the bed 30 degrees to eat. Thankfully, by 3 days after the surgery I was feeling fine. No positional headaches, which is the sign of the leak.
For the good news, the surgery was successful. I noticed an immediate difference, and could even separate out the pain from the surgery from my usual neck pain. The surgeon said that my nerves at C5/6 were extremely compressed so he expected me to feel worse before feeling better since he was messing around with everything in the area. The right side of my neck felt like I was beaten up after surgery, which was the inflammation from the surgery. My usual pain is more of a pinching feeling. Now, over a week later, I still need to rest my neck by the end of the day but it is so much better.
In other news, I only have 2 more IV treatments. I am really looking forward to having the PICC taken out. I will still have about 10 more days on the last oral antibiotic, but hopefully I will start to see more improvement once the main treatment is done. Time will tell!
Sunday, April 10, 2011
48 hours...
Not that I'm counting... but surgery for my neck is Tuesday morning. I know there are risks, but the pain can't get much worse than it has been lately. Tomorrow I meet with the surgeon to go over my MRI and discuss the surgery. I'll get my arrival time some time on Monday night. Tuesday morning, I arrive whenever they tell me to. It will be about 1.5 hours pre-op, 1 to 1.5 hours surgery, then 1 to 1.5 hours recovery. The anesthesiologist promised to give me the "good stuff" for nausea since I always get nauseous. Assuming all goes as planned, I'll be home in the afternoon and encouraged to take 2, 10 minute walks in the evening. Although I'm nervous, I'm also excited.
As for everything else, I am thankful to have taken my last Tindamax pill (for now) this morning. It seems that Tindamax is very effective. It supposedly attacks the cyst form of the bacteria. When attacked by the other antibiotics, some of the bacteria react by forming cysts around themselves for protection. These cysts don't get killed off because they are essentially hidden. The Tindamax is able to attack them though. 10 days of this medication has produced migraines, higher fevers and lots of general pain. Hopefully, I'll stop feeling so crappy soon.
But I still have another 20 days to look forward to at the end of treatment. Whatever it takes. At least I have a break for now.
As for everything else, I am thankful to have taken my last Tindamax pill (for now) this morning. It seems that Tindamax is very effective. It supposedly attacks the cyst form of the bacteria. When attacked by the other antibiotics, some of the bacteria react by forming cysts around themselves for protection. These cysts don't get killed off because they are essentially hidden. The Tindamax is able to attack them though. 10 days of this medication has produced migraines, higher fevers and lots of general pain. Hopefully, I'll stop feeling so crappy soon.
But I still have another 20 days to look forward to at the end of treatment. Whatever it takes. At least I have a break for now.
Sunday, April 3, 2011
Guess I'll skip the wine
It's not like I'm a heavy drinker, but I do enjoy an occasional glass of wine, or certain kinds of beer. For the past year I've been getting raging migraines any time I've had any kind of alcohol. It seems that was my body's way of telling me there was something more going on. I couldn't process the alcohol correctly, most likely because my body was busy fighting everything else. Alcohol was just one more poison thrown into the mix.
On Thursday, Dr. Braccia started me on a new medication that is supposed to attack the Lyme spirochetes that the other antibiotics can't get to. The PA, Heidi, warned me not to touch "even a drop" of alcohol while on this medication. The reason, she explained, is that this medication (Tindamax) will make you violently sick to your stomach when mixed with alcohol. Apparently this is the medication that is given to alcoholics to completely turn them off from alcohol!
Clearly, it's not like I will be missing much. I think it's the thought of not being able to even try it that pretty much sucks. I know I'll survive, and I have much bigger issues to deal with. I'm counting down to the neck surgery in just over a week.
On Thursday, Dr. Braccia started me on a new medication that is supposed to attack the Lyme spirochetes that the other antibiotics can't get to. The PA, Heidi, warned me not to touch "even a drop" of alcohol while on this medication. The reason, she explained, is that this medication (Tindamax) will make you violently sick to your stomach when mixed with alcohol. Apparently this is the medication that is given to alcoholics to completely turn them off from alcohol!
Clearly, it's not like I will be missing much. I think it's the thought of not being able to even try it that pretty much sucks. I know I'll survive, and I have much bigger issues to deal with. I'm counting down to the neck surgery in just over a week.
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