Sunday, January 27, 2013
Last week in the middle of my "good" days I got a kitten. I don't know what I was thinking. I already have bartonella and now I'm increasing my risk of re-infection. I couldn't help it though. I felt really bad for this little cat. She was so thin and her hair was stuck together and unkempt. Every bone in her body was protruding. She's about 8-10 weeks old. She's not the most beautiful kitten in the world yet, but I think she will look better once she gains some weight and becomes healthier. Her personality is pretty good. She's very sweet. As I'm typing this, she's curled up on my neck. She eats like she's never had access to food. She can gobble up a can of food in under 30 seconds. She also completely uses the litter box with no accidents. She doesn't act like a typical wild trouble-making kitten. She's very calm and gentle. I'm glad that she came at this time. She's cheering me up after I had another rough week.
I had that great week symptom-wise and now I'm back to my "normal" level which isn't good. I feel like I have a fever and I'm very tired. My feet were swollen today which is really unusual and I have no appetite. A few days ago I completely lost the feeling in my legs which hasn't happened since May. They were vibrating/tingling but without the pins and needles feeling. It took a long time to regain feeling. My hands have been losing feeling also. I couldn't see out of my left eye today and I haven't gone on any walks due to exhaustion and joint pain all week. The only thing that has stayed improved is my attitude. The B12 shots are helping me with that. For months I was ready to give up. I have never been suicidal, but I have thought to myself that I wouldn't care if something were to happen. Now I feel a little better. I'm ready to keep trying to figure something out that will help long-term.
Saturday, January 26, 2013
During that good week I had an unbelievably stressful day where my dog got lost, my car went off into a ditch while I was looking for him, and I had to listen to some of the most insensitive and condescending comments about chronic Lyme that are humanly possible (from an acquaintance who is a doctor!). I had a minor breakdown from the stress, but nothing like how that would have affected me normally. I found my dog and some very nice people lifted the back of my car out of the ditch with their hands so I didn't have to call a tow truck on a Sunday. Plus I finally decided to stand up to the doctor's arrogant misinformed opinions by stating some facts based on ILADS research.
The doctor situation is aggravating. I have a working relationship with this person and he is the most anti-Lyme doctor in the entire area. For that reason, I've never outright told him my diagnoses. I'm sure he strongly suspects what I have now after our conversation the other day. Not many average people are aware of cystic forms, CD57's, babesia etc. I'm not medically trained. I normally keep my mouth shut, but his comments were unbelievable. I had to say something. If he fires me for being educated, there are worse things that could happen. Although instead of being educated, he groups people that seek long-term treatment for Lyme into the following categories: "hypochondriacs, naive, brainwashed, ignorant, and just trying to seek disability" LOL. See why I avoid talking to him?
My LLMD and the rest of the office could tell I was feeling much better when I saw them during my good week. I'm glad they finally caught me on a good day so they could see the difference in my attitude and how I am normally. I was so happy. It was great to have a break from symptoms. The main break was from the psychological feelings that this is never going to end. My physical symptoms were still sticking around during my good week but they were easier to handle when I didn't feel completely hopeless and depressed.
The methylcobalamin is working miracles for my mood. It helps me get out of bed and have a good outlook. I'm able to figure out ways around the symptoms and stop myself from getting completely frustrated and giving up. It doesn't give me sustained energy though. I can feel the energy surge wearing off by the afternoon.
We talked a lot at my last LLMD appointment, but didn't change anything drastically yet. I wanted to change the way I take Flagyl to all at once in the evening instead of 3x per day. I take 750mg at night now. My reasoning for that was concern that Rifampin is lowering the bioavailability of Flagyl. I'm thinking a higher dose 1x per day will result in a higher spike in blood levels. My LLMD said it was fine to try that as long as I didn't get any GI side effects (which I never do on any medications oddly).
We talked about artemisinin a little bit. Over the next week or so I'm going to start it. I believe that some of my very resistant symptoms and the lack of drastic or permanent improvement could be due to babesia. Over the past 1.5 years I was only able to treat with Mepron for about 6 weeks at a time. I tried it for that length of time twice and both times had to stop for liver enzyme elevations.
The dosage that I'm going to start with for artemisinin is the Nutricology/Allergy Research brand Super Artemisinin 180mg. I will be starting with 2 pills 3x per day for 3 days on 11 days off. The theory behind the pulsing (according to a Seattle LLMD who uses it this way) is that your intestines develop an enzyme by about the 4-5 day point on artemisinin that renders it ineffective. So I'm starting at the middle dose. You can use up to 500mg 3x per day for 3 day pulses according to this LLMD. Another option is to do the low-dose daily schedule that Buhner used to recommend. He no longer suggests Artemisinin due to side effects. He now uses Cryptolepis and Sida Acuta. I can't really afford to dish out that much on those tinctures. I know that a lot of the "big name" LLMD's are still using Artemisinin and pharmaceutical relatives like Coartem because they feel it is the strongest of the herbs. For now, I'm going with that.
I also talked to a doctor about my appetite. I'm losing too much weight. It was bad enough when I was hungry and eating. At least I knew I was getting nutrition. Lately I have no sense of hunger and I've been eating next to nothing. Size 2 jeans that I bought a few weeks ago are falling off me now. So I asked for some help with that. The doctor I asked is not my LLMD, but an ND who knows I have Lyme and how I treat it. He suggested Gentian in a tincture to increase appetite. I was VERY worried about taking this since it contains alcohol and Flagyl and alcohol don't mix, but he said it should be fine and so far I haven't reacted.
I haven't had an increased appetite since starting Gentian. The only thing it does is give me a bad taste in my mouth so that it makes it more likely that I will eat to get rid of that taste. Maybe it takes time to work. I'm not sure.
I wish I could say that I'm still feeling great and going for walks but unfortunately this week has headed in the complete opposite direction. I'm flu-like, feverish, I lost a lot of feeling in my legs the other day to the point that I couldn't stand up for a while, and I'm very weak, tired and spacey again. I'm also having a lot of heart palpitations and joint pain. However, I'll take physical symptoms over psychological ones any day.I feel so out of control when the anxiety and depression come on. I'm glad I'm able to keep that in check naturally.
Sunday, January 13, 2013
I wasn't able to do a B12 shot today. I know that the lack of B12 is making the depression worse. My muscles are twitching too much. I was afraid that I would hurt myself if I tried to do it with twitching hands. I still have some fear after what happened the other day with the scary shot experience. I'm afraid that will happen again.
I know I'm depressed when I'm not even looking forward to a vitamin IV. I don't know why I get so down and ready to give up. It's not like me at all and I think it could be either a side effect of one of my antibiotics or from herxing.
Either way, I just feel like this combination is pretty much my last option and it's not working. I've tried everything but IV antibiotics (which I cannot afford). I'm worried that all of this will be permanent. I don't know how I will ever be able to live the rest of my life like this especially if it continues to get worse. I've tried so hard to get better. I've taken all kinds of antibiotics, herbs and supplements. I haven't eaten gluten, sugar or dairy for a year. I just don't know what else I can do. I hate being out of control. I'm scared of how my life is going and I feel like there's no way for me to change it.
In the morning before going I loaded up on advil, CoQ10, ginseng and I used the new increased volume of B12. This time I didn't have the massive twitch reaction that scared me a few days ago when I injected the B12. The new volume is 1mg suspended in a full ml. of solution instead of .5ml of solution. So a greater volume of the actual vitamin is able to make it past the IM needle. It made a big difference. That B12 shot felt much more potent. Without it, I would not have been able to get out of bed. I felt really bad from the fever.
Since my own snowboard is an advanced heavy one that is very responsive to any shift of weight I decided to rent one that would be a little easier to handle. On the way over to the lift I started getting really nervous. I was having a really hard time digging the edge into the snow in order to stop myself. The board was extremely slick. It was a very lightweight Burton board. Not wanting to be a wimp I just headed straight up to the top without any practice runs. I've been snowboarding and skiing for a long time so when I feel normal, I'm very confident on the mountain. My lack of balance made me feel more like a cautious beginner this time.
The first time down was a little difficult. I fell a couple of times but not badly. Then I started to get a little more confidence but I still stuck to easy and intermediate trails for the majority of the time. I was only able to make it down 2 times from the top and 2 times from the 3/4 point. It was okay, because the people that I went with were not the type of people who take run after run anyway. We rode the lifts up together but we split up on the mountain because we were all at different levels and speeds so I wasn't hindering anyone.
After about two runs, I started to get really lightheaded and I was seeing spots. Sure enough this happened right on time between 1:30 and 2:30 p.m. My hands were going numb and I was having heart palpitations. With my luck, this happened to be the one time all day that I was on a black diamond trail. I had to go over to the side and lie down for a few minutes. A few people stopped and asked me if I was okay and I just told them I was waiting for someone. Then I got up and made it down.
I had a good appetite yesterday which is typical when I have a fever. I was able to eat a good amount of food without getting too sick although I was pretty nauseous for most of the day. Towards the end of the night my typical psychological symptom of uncharacteristic anxiety and depression returned. Today I'm back to really weak and tired again. I slept for 11 hours without waking up even one time. I feel like I could go back to sleep for another 12 hours.
I'm glad I went, but in a way I'm sad about it too. I am getting really scared lately because I'm losing the ability to do a lot of what should be normal and easy for me. Snowboarding yesterday was about 10x more difficult than usual. I'm really not making any progress with my symptoms and I feel like yesterday may have been one of the last times I will be able to go snowboarding if something doesn't start drastically changing in a good direction.
Saturday, January 12, 2013
Yesterday was a "normal" day. I woke up extremely exhausted having just come off the previous day of blurry vision in my left eye, a headache and lots of twitching and nausea. I should have known that bad things always follow headaches for me. In the past I've had seizures right after headaches. Headaches are a rare symptom for me while I'm on antibiotics.
So yesterday I felt like crap but I needed to get up, so after getting something to eat and taking my medications I laid back down in bed and prepared to do my B-12 shot in my leg like I do every day. B-12 gives me enough energy to get up and moving for a few hours (by the afternoon I still crash).
I first attempted my left leg which can be difficult because I have to use my right hand to inject. I have too much numbness in my left hand to be reliable. Well as soon as the needle hit muscle, I had a tremendously painful muscle spasm that started in my leg and paralyzed my whole body for a few seconds. Thinking I had hit a nerve, I removed the needle and tried on the right leg. Again, right as I inserted the needle, my muscle spasmed PAINFULLY and I lost control of my hands and body for a few seconds again. Now I was getting scared...........I decided to try it again though because I didn't want to scare myself off of B12 altogether since it's the only thing that's helping to get me out of bed in the morning lately. The 3rd time it happened again!! This time I focused really intently on continuing to keep the needle in place. When the pain and twitching stopped, I slowly pushed in the solution.
Nevertheless, I was scared by the experience. It was very strange. I knew I had been very twitchy all week. I had a twitching attack at a doctor's office when I went in for a vitamin IV and I had other weird spacey things happening all week but this tops the cake. I have no idea what it was but it hurt and seemed to trigger something in my nerves/brain.
Today I did another one and it went okay. No extreme twitching or abnormal pain. I received a new order from Infuserve. I had asked them to increase my dosage to a larger volume because I only take 1mg per day of B-12 and it was suspended originally in a .5ml volume. That meant that when I injected intramuscularly through a 1" needle, over 25% of the volume was left in the syringe. Therefore I was only getting 75% or less of my dosage. So Infuserve kindly compounded the 1mg into 1ml of solution. The syringe is much sturdier this way and about 90% of the solution makes it into my muscle. It creates a little more of a dull aching and soreness during the injection since increasing the volume 100%, but it's not unbearable. I'd rather have some discomfort if it means getting more of the dosage in.
Today I have plans to go snowboarding. I know without a doubt that it's an extremely bad idea with how I've been feeling lately. I don't know what I'm thinking. I feel terrible. I can barely move my knee and calf and all of my muscles already hurt from all the twitching that I had this week. I'm extremely exhausted and spacey and we're going in the afternoon which is my worst time of day. I know that this type of activity is going to be next to impossible for me. I'm far from a glutathione IV as well. However, even just going up and being around something that I used to enjoy actively doing is better than not doing it at all. I'm going to rent a beginner board and try to get down on some easy/intermediate trails. No jumps, black diamonds or half-pipe for now.
I'm aware that going snowboarding today will probably make me very ill and in a lot of pain. One thing it won't do is give me any setbacks or relapses. I haven't improved. I'm worse than usual right now so I'm not losing any progress by going today. I'll be lucky to leave the mountain uninjured with the amount of dizziness, twitching and neuropathy I have that is likely to throw me off balance.
Sunday, January 6, 2013
I'm in a LOT of pain. If I don't keep my mind busy, it's almost unbearable. I was crying last night from it. The pain is literally making me shaky and freezing cold. The only thing I can do is lie down on a vibrating heat mat, rest and shake from unrelenting chills under 4 blankets. I am completely non-functional today. I woke up and took 3 advils in the middle of the night and I just took another two mid-morning along with alka seltzer gold to hopefully calm my stomach.
I'm getting dehydrated because drinking anything is intensifying the pain (as is eating). I hope this goes away by tomorrow. I avoid calling the office, but this pain is pretty severe and unusual so if it doesn't decrease in a few days I'll have to call. In a few hours I'm going to try to get it together enough to cook some rice and chicken broth.
This pain could create a problem for me if I can't start eating and drinking soon. I was actively trying to force some eating so that I wouldn't lose anymore weight. On days that I was having a hard time eating, I would make sure to drink at least 1000-1500 calories. Now I can't even do that. I don't want something within my control (weight loss) to be the reason why I have to stop meds.