Willa has Lyme too, took her to the vet yesterday. My poor pup. I took her to the vet after a tick bite in the fall and they didn't do anything then...no test, didn't recommend she be vaccinated. At least it hasn't been very long.
Wednesday, April 8, 2015
Puked up a perfectly good omelette & all that expensive medicine
I sure hope this is rock bottom. I've had trouble eating the past couple days, but I did have an okay day Monday. Sunday not so much. I made it to my family Easter gathering, but I was belly sick and ended up sleeping on the couch while my family ate. They're noisy folk, too, so that takes skill. Or just a complete lack of awareness of the world around me.
Friday, March 27, 2015
Healing begins....?
I have had an appointment each day this week (excluding today). It's crazy how much being out of the house for a couple hours can take out of me. Yesterday I had a dental appointment. When I got home I struggled to prepare lunch and then passed out before I finished eating it. It doesn't help that the gluten free wraps I bought aren't all that tasty. I managed to wake up from my nap like 5 hours later, so that's good. It sometimes feels like a fight to get out of dream land. Sleeping makes me all stiff and numb. It freaks me out when I wake up and I can't feel my hands. Especially when it's difficult to move them.
I met with the Lyme doctor. She does think I have Lyme, and suspects I have co infections Babesia and Bartonella as well. She sent away for an Igenex western blot, which will come back in 3 weeks. My follow up is April 30. She wants me to try and get my primary care to test for other things as well, like mycoplasmic pneumonia. I have a chronic cough that she doesn't think is Lyme - but it is on a lyme symptom list I saw. I haven't been taking my temperature but I think I'll start. When I was in her office I had a temp of 100.5. She took it three times.
I started antibiotics yesterday - Hydroxychloroquin and clarithromycin. Dr. H also recommended that I start taking fish oil (1000mg EPA +DPA) for inflammation and curcumin phytosome for memory (of course, I'm not sure if I mentioned it but I can't remember shit right now, hoping this blog will help). Also a 10 billion + probiotic. My friend recommended Green Vibrance powder and Saccharomyces Boulardii so I ordered those on Amazon, and purchased another probiotic at GNC for the meantime. I just spent $200 on supplements. *cry*
Today I managed to get up early and cook an awesome breakfast - sweet potato hash with bacon! Then I napped until 12:30. My feet, hips and knees aren't too bad today so I'm going to attempt a hike. Willa needs it. It hopefully won't do me in for the day, as I'd like to see some people later. Sanity maintenance, you understand.
I met with the Lyme doctor. She does think I have Lyme, and suspects I have co infections Babesia and Bartonella as well. She sent away for an Igenex western blot, which will come back in 3 weeks. My follow up is April 30. She wants me to try and get my primary care to test for other things as well, like mycoplasmic pneumonia. I have a chronic cough that she doesn't think is Lyme - but it is on a lyme symptom list I saw. I haven't been taking my temperature but I think I'll start. When I was in her office I had a temp of 100.5. She took it three times.
I started antibiotics yesterday - Hydroxychloroquin and clarithromycin. Dr. H also recommended that I start taking fish oil (1000mg EPA +DPA) for inflammation and curcumin phytosome for memory (of course, I'm not sure if I mentioned it but I can't remember shit right now, hoping this blog will help). Also a 10 billion + probiotic. My friend recommended Green Vibrance powder and Saccharomyces Boulardii so I ordered those on Amazon, and purchased another probiotic at GNC for the meantime. I just spent $200 on supplements. *cry*
Today I managed to get up early and cook an awesome breakfast - sweet potato hash with bacon! Then I napped until 12:30. My feet, hips and knees aren't too bad today so I'm going to attempt a hike. Willa needs it. It hopefully won't do me in for the day, as I'd like to see some people later. Sanity maintenance, you understand.
Wednesday, March 25, 2015
My little toe
Today it's my right pinky toe. It has no visible issue, it just hurts. My symptoms are so bizarre. Some come and go, others are there to annoy me almost constantly. Like brain fog. It lessens sometimes, like now (only way I could be writing here). I still feel pretty dull, though.
I went to see an infectious disease specialist this morning. He doesn't believe in chronic lyme. He thinks it could be sleep apnea and wants me to do a sleep study. I think that would be cool. It seems docs really like to ignore most of my symptoms. Anyway - LLMD tomorrow (today! I forgot to post this) !!!!! Please save me, lyme doctor :)
After my appointment I returned to my bed and fell asleep watching Mad Men. I had a dream where I was losing my ability to remain upright, while walking around inside a hospital looking for help. I somehow wound up outside, and down in the freshly fallen snow. I watched as people walked by ignoring me, and purposely changed direction to avoid me.
I was also denied short term disability - damn. I think my doctor was just too brief on the form so hopefully that'll be fixed. Most of the stories i've read about people with Lyme involve them going pretty broke.
So, this was a depressing post. I'm still hanging in there, promise.
I went to see an infectious disease specialist this morning. He doesn't believe in chronic lyme. He thinks it could be sleep apnea and wants me to do a sleep study. I think that would be cool. It seems docs really like to ignore most of my symptoms. Anyway - LLMD tomorrow (today! I forgot to post this) !!!!! Please save me, lyme doctor :)
After my appointment I returned to my bed and fell asleep watching Mad Men. I had a dream where I was losing my ability to remain upright, while walking around inside a hospital looking for help. I somehow wound up outside, and down in the freshly fallen snow. I watched as people walked by ignoring me, and purposely changed direction to avoid me.
I was also denied short term disability - damn. I think my doctor was just too brief on the form so hopefully that'll be fixed. Most of the stories i've read about people with Lyme involve them going pretty broke.
So, this was a depressing post. I'm still hanging in there, promise.
Friday, March 13, 2015
In the Fog
It has been years since I first started experiencing strange symptoms. In 2011 I was diagnosed with elbow tendinitis. That very well could have been elbow tendinitis. I'm a rock climber, so I use my arms quite a bit. So I took a break from climbing, and resolved to adhere to a more well rounded exercise regimen. That is perhaps the only point I will give the medical system. Yes, it very well could have been tendinitis and probably was.
Around the same time my TMJ started acting up. I had always had clicking in my jaw, but it had never really bothered me until then. I was having terrible headaches and it was difficult to focus on, well, anything. So I had a nightguard made, and there was considerable improvement. My doctor also prescribed me amitriptyline to help me sleep - it worked a bit too well and I couldn't quite wake up in the morning on it. Four years later, I still get TMJ headaches frequently, and I'm taking a muscle relaxer to sleep at night.
So late 2012/early 2013 my nerve and joint problems started. Numbness and tingling in my fingers, shooting pain up my arms. Sharp pain in my wrists and elbows. I was diagnosed with carpal tunnel syndrome, and cubital tunnel syndrome. Neither of those could actually explain the pain in my wrist. Carpal tunnel can cause wrist pain, but not the type of pain I was experiencing. Once again, we blamed rock climbing. It was recommended that I have surgery on my right wrist, which I did in January 2014. The numbness and tingling did seem to go away, the wrist pain was untouched. Fast forward to now - and oh, my fingers are numb and tingly again. Sure glad I wasted my time and money on that venture.
Now, there was a time, where I did actually climb enough for those injuries to be plausible. Say, 2010. But in 2012/2013 I was working in an office, and really didn't get to climb all that much. Probably once or twice a week, and I was taking it easy. I had taken up trail running, and yoga. I had never thought I'd be a runner. When I was young I would always get shin splints running on pavement. I started on this short, softly packed trail at Hedgehog Park (aka Murder Park) in Salem, NH. It was really short, like 1k. Perfect for a gentle introduction to trail running. Soon I was doing laps, and bored of the place - though there was a beautiful blue heron there that I got to scare into flight on every run. I never got into long distance, but I would usually run 3-4 miles 2-3 times a week.
It's surprisingly easy to ignore what's going on in my body. Well, it was. I'm at a point now where its's impossible - but I would always blame pain on whatever physical activity I had partaken in that day. Even if the pain seemed completely random. Climbing isn't a gentle sport. It can wreak havoc on your body if you aren't careful. Since I had the elbow tendinitis - I was being extremely careful. So, I started having knee pain. Ankle Pain. Now I have Tarsal tunnel syndrome - recently saw a Podiatrist. That is essentially Carpal tunnel for the foot. Numbness and tingling. Now I know this can't be from things i'm doing. It started about a month after I had stopped running because of other foot pain ( a pinched nerve). The doctor said it could be that I just don't have a lot of space for my nerves or that it could very well be caused by Lyme disease, which, since the tarsal tunnel presented around the time of my more serious symptoms, I had asked about.
So that's what I think this all is. The medical system is extremely flawed when it comes to the diagnosis and treatment of late stage Lyme disease. I started having dizzy spells in January. They have become more and more frequent, and i'm exhausted all the time. I feel like i'm stumbling around with my head in a cloud. My vision is blurry and doubled sometimes. My cognition is impaired. I'm out of breath and dizzy from short bursts of physical activity that would never have even touched me before. Everything hurts. My neck and back joined the club, I don't know when. I had conjunctivitis last week - apparently another symptom of lyme (the list is a mile long). I have seen several doctors. The neurologist found nothing (but hey, I don't have MS or a brain tumor, so that's a win!). The rheumatologist clearly doesn't believe in chronic lyme, but golly, it's probably fibromyalgia! Next up is an infectious disease specialist, who i'm sure will be useless as well. Especially since I'm having trouble just getting an appointment - return my calls damn you!!!
My friend went through this situation - he had 3 negative lyme tests through his primary, eventually went to a Lyme Literate Medical Doctor (paid out of pocket, insurance doesn't cover), who sent out for tests from a specialized lyme testing lab called Igenex, which came back positive. So effectively - insurance is nearly useless, and our medical system is broken for people with chronic lyme. On top of having a debilitating illness, Lyme sufferers get to lose their savings to the disease as well. I am not including myself as one yet, as I am still waiting to be diagnosed. I still haven't been treated, I have an appointment made with an LLMD which can't get here soon enough. Meanwhile, my friend suggested I go gluten, sugar and caffeine free. This seems to be helping some with my stomach issues - which I didn't mention above, because, ew, gross.
It seems to help if I get out to do something physical each day, even if it is just a short walk with my dog (who is actually adjusting quite well to the decrease in exercise, and is a great cuddle buddy - i'd be much worse off without her). Yoga helps too, though I can't really balance at this point. I can't climb for shit, but going to the rock gym makes me feel better - just being around my friends. I'm feeling pretty isolated over here. Some days are better than others.
No matter how this turns out - I know I can still be a bad ass. So what, if I have a chronic illness for the rest of my life. I will fucking live with it and make it work.
Around the same time my TMJ started acting up. I had always had clicking in my jaw, but it had never really bothered me until then. I was having terrible headaches and it was difficult to focus on, well, anything. So I had a nightguard made, and there was considerable improvement. My doctor also prescribed me amitriptyline to help me sleep - it worked a bit too well and I couldn't quite wake up in the morning on it. Four years later, I still get TMJ headaches frequently, and I'm taking a muscle relaxer to sleep at night.
So late 2012/early 2013 my nerve and joint problems started. Numbness and tingling in my fingers, shooting pain up my arms. Sharp pain in my wrists and elbows. I was diagnosed with carpal tunnel syndrome, and cubital tunnel syndrome. Neither of those could actually explain the pain in my wrist. Carpal tunnel can cause wrist pain, but not the type of pain I was experiencing. Once again, we blamed rock climbing. It was recommended that I have surgery on my right wrist, which I did in January 2014. The numbness and tingling did seem to go away, the wrist pain was untouched. Fast forward to now - and oh, my fingers are numb and tingly again. Sure glad I wasted my time and money on that venture.
Now, there was a time, where I did actually climb enough for those injuries to be plausible. Say, 2010. But in 2012/2013 I was working in an office, and really didn't get to climb all that much. Probably once or twice a week, and I was taking it easy. I had taken up trail running, and yoga. I had never thought I'd be a runner. When I was young I would always get shin splints running on pavement. I started on this short, softly packed trail at Hedgehog Park (aka Murder Park) in Salem, NH. It was really short, like 1k. Perfect for a gentle introduction to trail running. Soon I was doing laps, and bored of the place - though there was a beautiful blue heron there that I got to scare into flight on every run. I never got into long distance, but I would usually run 3-4 miles 2-3 times a week.
It's surprisingly easy to ignore what's going on in my body. Well, it was. I'm at a point now where its's impossible - but I would always blame pain on whatever physical activity I had partaken in that day. Even if the pain seemed completely random. Climbing isn't a gentle sport. It can wreak havoc on your body if you aren't careful. Since I had the elbow tendinitis - I was being extremely careful. So, I started having knee pain. Ankle Pain. Now I have Tarsal tunnel syndrome - recently saw a Podiatrist. That is essentially Carpal tunnel for the foot. Numbness and tingling. Now I know this can't be from things i'm doing. It started about a month after I had stopped running because of other foot pain ( a pinched nerve). The doctor said it could be that I just don't have a lot of space for my nerves or that it could very well be caused by Lyme disease, which, since the tarsal tunnel presented around the time of my more serious symptoms, I had asked about.
So that's what I think this all is. The medical system is extremely flawed when it comes to the diagnosis and treatment of late stage Lyme disease. I started having dizzy spells in January. They have become more and more frequent, and i'm exhausted all the time. I feel like i'm stumbling around with my head in a cloud. My vision is blurry and doubled sometimes. My cognition is impaired. I'm out of breath and dizzy from short bursts of physical activity that would never have even touched me before. Everything hurts. My neck and back joined the club, I don't know when. I had conjunctivitis last week - apparently another symptom of lyme (the list is a mile long). I have seen several doctors. The neurologist found nothing (but hey, I don't have MS or a brain tumor, so that's a win!). The rheumatologist clearly doesn't believe in chronic lyme, but golly, it's probably fibromyalgia! Next up is an infectious disease specialist, who i'm sure will be useless as well. Especially since I'm having trouble just getting an appointment - return my calls damn you!!!
My friend went through this situation - he had 3 negative lyme tests through his primary, eventually went to a Lyme Literate Medical Doctor (paid out of pocket, insurance doesn't cover), who sent out for tests from a specialized lyme testing lab called Igenex, which came back positive. So effectively - insurance is nearly useless, and our medical system is broken for people with chronic lyme. On top of having a debilitating illness, Lyme sufferers get to lose their savings to the disease as well. I am not including myself as one yet, as I am still waiting to be diagnosed. I still haven't been treated, I have an appointment made with an LLMD which can't get here soon enough. Meanwhile, my friend suggested I go gluten, sugar and caffeine free. This seems to be helping some with my stomach issues - which I didn't mention above, because, ew, gross.
It seems to help if I get out to do something physical each day, even if it is just a short walk with my dog (who is actually adjusting quite well to the decrease in exercise, and is a great cuddle buddy - i'd be much worse off without her). Yoga helps too, though I can't really balance at this point. I can't climb for shit, but going to the rock gym makes me feel better - just being around my friends. I'm feeling pretty isolated over here. Some days are better than others.
No matter how this turns out - I know I can still be a bad ass. So what, if I have a chronic illness for the rest of my life. I will fucking live with it and make it work.
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