One of my newer med.s I have been started on is Coartem, a prescription Artemesia product which you take 3 days out of the month to fight Bartonella. My Bart symptoms are noticeably worsened including air hunger, swollen feet, fatigue, and more after taking the Coartem for about a week. I am close to taking my third monthly round of Coartem and prepared to start detoxing the dead bugs intensely. Another new medicine that I was started on was Tindamax. When my LLMD (Lyme Literate Medical Doctor) went to the International Lyme and Associated Disease conference in Canada he learned a lot about pulsing the Tindamax to treat Babesia much like The IV Rocephin for Lyme. You take high doses 3 days a week and detox the other 4 days giving the bugs a hit and run chance. The minute they run they get hit again and after much cleaning and detoxing we can eliminate the bugs and their harmful toxins from the body. Aside from Tindamax he doubled my Rifampin which is a huge hit to the body and turns urine a deep orange color, and I actually believe that after all these things were added and increased I've started either having Gall Bladder or Spleen pain that's not pinpoint able.
A Plus side to the conference is my Vermont LLMD Spoke and showed one of my videos from an episode I had with prominent speech issues and tremors. So without knowing it, I'm famous :) Thousands of doctors got to learn from the mistakes of 10 illiterate ones.
Monday, November 14, 2011
Recovery from Surgery NOT as Expected
When I arrived for surgery I was scheduled to be rolled into the OR at 4 PM. I Wasn't actually rolled in until about 5:15 PM due to a delay of doctor communication. Basically my PCP never sent over the note that she physically examined me and cleared me for surgery. By now we are very used to the mishaps between doctors and their disorganization.
The surgery went well. Final report was that the bone was fairly long and sharp and was twisting instead of curving causing extreme as I re-injured it endlessly by sitting, snowboarding, skiing, horseback riding, etc. As this was probably a genetic defect in the Coccyx itself , It was definitely nothing any other doctor could have helped and it was time for it to be removed and the area to properly heal. The procedure caused excess bleeding, more then normal, from inflammation of either the Lyme bacteria in the injured area or the tailbone injuring it continuously, but basically it bled a lot.
After the procedure I was in so much pain I didn't even want them to bring my mom in but I was rolling onto my stomach screaming as soon as I woke up from anesthesia. We stayed for 3 days with no answer for the pain and I fought the grueling hour and a half ride home from Lebanon in pain. Then I suffered through days on 6 mg of Hydromorphone (stronger then Morphine, 4mg is maximum recommended dose). Finally we took me off of Hydromorphone and raised my Ibuprofen level since its an anti inflammatory and I usually take 800 mg anyways. That was what made the most difference. I took Tylenol Cod #2 at night to get me through and faught the days until now, 3 weeks out, I have equal amount of pain as I suffered with for 2 grueling years before surgery. I am back in the driver's seat, preparing for the upcoming ski season, going for walks to begin to build my stamina slowly. Everything is falling into place with the tailbone recovery, now we just have to finish the rest of my recovery process.
The surgery went well. Final report was that the bone was fairly long and sharp and was twisting instead of curving causing extreme as I re-injured it endlessly by sitting, snowboarding, skiing, horseback riding, etc. As this was probably a genetic defect in the Coccyx itself , It was definitely nothing any other doctor could have helped and it was time for it to be removed and the area to properly heal. The procedure caused excess bleeding, more then normal, from inflammation of either the Lyme bacteria in the injured area or the tailbone injuring it continuously, but basically it bled a lot.
After the procedure I was in so much pain I didn't even want them to bring my mom in but I was rolling onto my stomach screaming as soon as I woke up from anesthesia. We stayed for 3 days with no answer for the pain and I fought the grueling hour and a half ride home from Lebanon in pain. Then I suffered through days on 6 mg of Hydromorphone (stronger then Morphine, 4mg is maximum recommended dose). Finally we took me off of Hydromorphone and raised my Ibuprofen level since its an anti inflammatory and I usually take 800 mg anyways. That was what made the most difference. I took Tylenol Cod #2 at night to get me through and faught the days until now, 3 weeks out, I have equal amount of pain as I suffered with for 2 grueling years before surgery. I am back in the driver's seat, preparing for the upcoming ski season, going for walks to begin to build my stamina slowly. Everything is falling into place with the tailbone recovery, now we just have to finish the rest of my recovery process.
Friday, October 14, 2011
Surgery # ? (Coccygectomy)
I have been chasing the doctors in circles about my chronic tailbone pain, trying to get answers. Multiple times I've posted on this blog about it. Literally, a pain in the butt. Finally, we saw an amazing orthopedic specialist through Dartmouth in Lebanon, NH called Dr. Bernini who has told me I am a good candidate for a Coccygectomy or tail bone removal. He said that a normal person has a sacrum of fused bones and at the bottom a flexible coccyx of 3-5 bones, but mine is only two stiff bones very near the skin causing coccydenia (coccyx pain or tailbone pain). We asked if it was a degenerative feature because my mother ad her mother also had coccygectomys for coccydenia. He replied that only the Maharaj's in India were known to have long coccyx as a sign of royalty.
So, on October 18th I will go in for my surgery and get my tailbone cut open for the second time and go under anesthesia for the millionth time in hopes to be part of the 90% whose pain was eliminated with such surgeries. It should be a couple weeks of recovery and hopefully not a rough first few days. Deep breath, maybe I'll finally be able to horseback ride comfortably.
So, on October 18th I will go in for my surgery and get my tailbone cut open for the second time and go under anesthesia for the millionth time in hopes to be part of the 90% whose pain was eliminated with such surgeries. It should be a couple weeks of recovery and hopefully not a rough first few days. Deep breath, maybe I'll finally be able to horseback ride comfortably.
Walk Before You Run
As I start to feel better every month I am tempted to increase my activity level. After all, its healthy to be out and moving right? Well, I notice more crumby days then great, and I can tell I need to slow down. Even though (as long as I avoid fluorescent) the speech and walking isn't my main issue, I still have vertigo, fatigue, sleep problems, stomach pain, and achy joints. These are enough to keep me in bed on a bad day.
Its often seen that people who start to feel better want to act it and reach out to their previous activities including staying up late, avoiding naps, splurging from a diet, doing activities that are too strenuous like moving furniture, standing for half the day or the whole day, walking more then a mile straight, shopping under that terrible lighting for long periods of time, and forgetting their medicines. These are just things that send you right back downhill twice as hard. I know someone who was sick with Lyme for only a year and even though he felt better after a few months of treatment he still didn't resume to his regular activities until a full year later. Because he gave his body that much time to heal, he still to this day, 3 years later, has not had a single symptom and is resumed to being a star alpine ski racer and coaching his kids.
It's important to be patient at this stage, no matter how much you miss life or think you can handle it. Get little cheer people in on your plan to stay in bed for a month or two and to stay on the sidelines another few months, that way you have more than will power holding you back.
Its often seen that people who start to feel better want to act it and reach out to their previous activities including staying up late, avoiding naps, splurging from a diet, doing activities that are too strenuous like moving furniture, standing for half the day or the whole day, walking more then a mile straight, shopping under that terrible lighting for long periods of time, and forgetting their medicines. These are just things that send you right back downhill twice as hard. I know someone who was sick with Lyme for only a year and even though he felt better after a few months of treatment he still didn't resume to his regular activities until a full year later. Because he gave his body that much time to heal, he still to this day, 3 years later, has not had a single symptom and is resumed to being a star alpine ski racer and coaching his kids.
It's important to be patient at this stage, no matter how much you miss life or think you can handle it. Get little cheer people in on your plan to stay in bed for a month or two and to stay on the sidelines another few months, that way you have more than will power holding you back.
Missing Life
There are times where being chronically ill just gets old. Now is one of those times. When I started to feel better last year I was so happy and thrilled. I started making friends again, and keeping up with them by texting constantly. I attended rock concerts and even labeled myself as a booking agent and hooked bands up with each other, attending weekly shows sometimes. I kept busy throughout the summer and joined an outdoor program where I hiked many key New Hampshire spots like Cannon Mountain, The Flume, Artist Bluff, Franconia Falls, Waterville Valley, and Lafayette Mountain. We visited beaches like Wellington State Park and Hampton Beach where I had endless energy swimming and playing football and volleyball. That is where I spent almost all my time talking and hanging with friends, and then met my boyfriend Tyler. School started and with a busy homework load and crazy schedule I decided to push it a few steps further. Along with joining student council and picking up horseback riding I added a daily running regimen to the plate and on weekends attended my beau's football games. When winter rolled around I joined the Alpine Ski Team and pushed myself as hard as I could as I felt the ground beneath me collapsing. That's when I went down hill again, pushing myself overboard and stressing myself over the edge of a cliff. Now, 10 months later, I wish I could live it all again. I spent this entire past summer in a wheelchair, attending therapy and being left out by friends, unable to enjoy even a nice dip in the pool because of my Picc line. It is hard to go back ten steps, but even harder to go forward 10 steps and back ten leaps! It's almost a feeling like I've been taunted by health, and now I'm forced to suffer in a bath of 'patience'. I sit in bed and hope, pray, and wish for the life I miss to return, even if it's not the same as it was before, I still would like to introduce myself to someone without Lyme hanging over my head. To be normal is to be free, but currently I'm a caged bird with clipped wings.
Tuesday, September 13, 2011
New Therapy Pet
The day I went in to the hospital to have my first dose of the Invanz, we saw a sign on the way home. It read free Main Coon Kittens and we turned around to go back. My mom's always wanted a Maine Coon cat and I've wanted a chinchilla since my Hamster died a month ago. This would be better and cheaper then a Chinchilla. We discovered it was a litter of 2 boys and 2 girls, pure bred, Maine Coon kittens. I fell in love immediately with the first female, the other female was the runt, and I took her into my arms naming her Pippin. She was docile and soft and so loving to me. The first day and night she slept, and then she woke up. Shes been exploring and jumping and playing and keeping me up at night since. I'm allergic to cats but not bad, but this one sleeps right near my head and aggravates my allergies. There's no way I'm returning her, shes mine and I love her, so I will suffer through to keep her with lack of sleep and headaches and a stuffy nose. As she gets bigger I will brush her daily and get her spayed and declawed. Shes already treated for fleas and ticks and I'm keeping her indoors so I'll put a Hepa filter in my room and change my sheets weekly and ask my PCP for some more Nasonex. This is a very sweet kitten, and such good therapy to have something to baby.
Detoxing Madness
I've found that detoxing is as important as treating with this disease. I do a few things recently:
In the morning I make a drink and combine a few different steps by putting magnesium/calcium powder which fizzes and dissolves, flavored (to flavor of choice) Vitamin C 1,000 to 5,000 (1-5 packets) mg powder packet, 13 drops of Liver Life, 10 Drops of Burbur for kidneys, and drink it with a straw.
After lunch I prepare a cold Green Tea drink, one to two tea bags to a small amount of hot water, add some honey, let steep for 2 or 3 minutes. Then add cold water and ice cubes and make sure to drink at least 32 oz. a day. I drink this while I soak my feet in a hot 'lavender' Epsom salt foot bath for 30 minutes. You only need about a cup of salt to a 2 or 3 Gallon foot bath.
In the late afternoon I add 10 more drops of Burbur, 13 drops of liver life, and every 3 days I add 10 drops of Algas for metal detoxing to regular water. I'm about to start Pinelli for brain cleansing, which will be added with Burbur and Liver life. Also Red Root is for Lymphatic drainage, I will be drinking that with the other tinctures soon, but I'm starting one at a time slowly because I'm aware that some people respond differently to detoxing and can herx pretty bad.
With all this detoxing I'm laying on the biomat half pad a few times a week too. That is a heat and amethyst pad that works great for Lyme and relaxation. I lay on it for about an hour in the peace and quiet.
I have a good schedule going and I'm glad for it.
In the morning I make a drink and combine a few different steps by putting magnesium/calcium powder which fizzes and dissolves, flavored (to flavor of choice) Vitamin C 1,000 to 5,000 (1-5 packets) mg powder packet, 13 drops of Liver Life, 10 Drops of Burbur for kidneys, and drink it with a straw.
After lunch I prepare a cold Green Tea drink, one to two tea bags to a small amount of hot water, add some honey, let steep for 2 or 3 minutes. Then add cold water and ice cubes and make sure to drink at least 32 oz. a day. I drink this while I soak my feet in a hot 'lavender' Epsom salt foot bath for 30 minutes. You only need about a cup of salt to a 2 or 3 Gallon foot bath.
In the late afternoon I add 10 more drops of Burbur, 13 drops of liver life, and every 3 days I add 10 drops of Algas for metal detoxing to regular water. I'm about to start Pinelli for brain cleansing, which will be added with Burbur and Liver life. Also Red Root is for Lymphatic drainage, I will be drinking that with the other tinctures soon, but I'm starting one at a time slowly because I'm aware that some people respond differently to detoxing and can herx pretty bad.
With all this detoxing I'm laying on the biomat half pad a few times a week too. That is a heat and amethyst pad that works great for Lyme and relaxation. I lay on it for about an hour in the peace and quiet.
I have a good schedule going and I'm glad for it.
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