It has been four weeks since I have been on treatment. Four weeks! I will honestly say, I haven’t noticed a big change in symptoms, nor have I completely crashed. Hmm..
The biggest reason for taking this break has been to let my gut heal. I have been on antibiotics for a long time. My tummy has not been happy, from the stabbing pains, to the fun bathroom issues. My body is riddled with fungus, and I just needed it to clear. I have noticed that there has been improvements in these issues, but also a change in me.
Treating Lyme, especially with the severity of symptoms, and such aggressive protocols is tough. It has slowly begun to break my spirit a bit. Having a break from all of it, even though I am not well, has given my brain a vacation from dealing with all of this. I feel more sane.
I have begun to notice a difference in my legs, with numbness increasing and knee pain, which is somewhat unusual for me, and today I have a high feeling and am a bit weak and shaky. I know I will have to start treatment to maintain, but I am going to wait until next week. I am still not on any sort of downward spiral, and if I can say I made it 5 weeks, that is amazing. What does it mean? I am not really sure.
I saw Dr S, and we discussed all the blood work I had done. I did have slightly high ANA titers, which can indicate autoimmune antibodies. It is usually used to diagnose Lupus, although it doesn’t always mean Lupus. I questioned him about my MG antibody levels, as I did have it in my system, which was not over the normal, rather in the higher middle, and was right on my assumptions, that there is actually not suppose to be any MG antibodies in your system.
It is kind of like a Lyme test. You have 3 bands instead of 5, so the doctors that are not Lyme literate conclude that you do not have Lyme. Lyme should not be in your system. If you have Lyme specific bands, you have Lyme. Same deal. But my levels were not out of range… I know I will have to keep an eye on it and be retested at a later date.
Then there was my poop sample I had to give. We were testing for c diff as well as other bacteria. At this point I am just getting so many tests under the rainbow to try to figure out missing pieces of the puzzle. A forewarning, this is TMI. Let me tell you, with major stomach issues, it is not fun giving a sample. They give the option of having a thing to “go” in that will nicely go into the small sample container. That doesn’t work however, if your ahem.. sample.. is disgusting sludge. I made a mess… I not only wanted to scrub myself with an SOS pad, but felt like I should probably burn my house down. LOL
All normal. I was pretty sure it would be. I know my stomach is just messed up from yeast, and the long term antibiotics. I was given a few supplements to help heal my gut and every third day I pop a Diflucan. I think the very worst of it, is that I have completely changed my diet. I have made sure of absolutely no sugar, no gluten, and even no starch. No starch at all! I have begun to have a tiny bit of potato, but next to nothing. Yeast feeds on sugar, and starches convert to sugar. I have also been doing a few juicing days as well as a detox juice every morning for breakfast.
I have noticed my skin is clearer, I am more “regular”, and my pants are looser. I don’t like to weigh myself since I tend to obsess. I did for my blog of course, and in this time of my diet change, I have lost 6 pounds and about 7 inches. My stomach is far less distended. I guess that is the one positive to missing out on yummy foods I love. At first this was really hard, even though I never really ate a ton of sugar, but cutting all the starches I felt like I was starving to death. After a week, I found that I really wasn’t missing it very much. I have still been sleeping my life away. There has been three days that I have not taken a nap however. That is actually a pretty big accomplishment for me.
I have had a bit more energy in the morning. Funny story. Over the weekend I decided before I got ready in the morning, I would clean the bathroom sink and toilet. We buy generic pretty much everything to save a buck, and the cheap bleach bottles cap ripped right off, dousing my legs and feet in bleach, all over the counter, and the rest of the bottle dumped onto the floor.
Within a few seconds, I could start to feel the burn of the bleach on my legs and feet, and my legs are like noodles anyway, and I fell right backward and ripped the towel rack off the wall. Oops. I had to immediately jump into the shower the wash away the bleach from my legs and feet, and then I had a hell of a mess to clean up. At least my bathroom floor is clean. 😉 It was one of those mornings I really wanted a do-over. Thank goodness Dave could put the towel rack back on the wall. He had to fix it, since I ruined all the threading in the screws. He told me it was not meant to be hit with such brute force. Haha. Oh Dave.
Dr S decided to do an extensive lab test on me, since he was very convinced that I have an autoimmune disease (I still am really wondering about MG, but I did not have off the charts blood work..). After a few weeks, I got my results back, and there was absolutely no revelations. What the fudge. Obviously, I do not want anything else to be wrong, I already have a laundry list of diseases, disorders, and piss poor genetics. An explantation for why I have not made progress in such a long period of time is what I was hoping for. So.. back to the drawing board… for now.
I asked what my next step should be, and I am going to make an appointment with my neurologist. Permanent damage is a very good possibility. I was not just sick at one point, I was completely severely neurologically impaired. It is pretty reasonable to say that I might have one sort permanent damage. It would be good to get a symptom evaluation and if there is management options.
After talking a lot about this, I would have to agree. I love my LLMD, but I believe that I am completely being overmedicated for the zero progress I have made in a year and a half. It would be an entirely different story if I was making progress with the treatment protocols I have been on, as the thought was beat the shit out of the bugs, which is also beating the shit out of me. It clearly isn’t working.
I have an appointment coming right up, and this will be a big discussion I will be having. Less might be more for me. I think I am just not on the right path, and maybe less will be more. I am hoping they will have an open mind about this. As well as not be pissed I have taken a very long break. That might have huge significance to them though.
I had a good Thanksgiving. It was very relaxing. ave and I actually stayed home. I didn’t cook a traditional turkey day dinner, let’s be real here. Not happening. We actually had lobster. I got a package of lobster meat as a little Thanksgiving day bonus. It isn’t so bad working for a seafood company. 😀 Couch time and lobster. I was totally okay with that. We went and visited the “Make a Wish” couple later on in the evening to say hello and had an early night to go to bed.
Dave took me to see the last Hunger Games movie. I was so excited. It was my nap time when we went, and my head kept bobbing all around, I couldn’t control it at all. I fell asleep for a few minutes. Dave gave me a good nudge and I woke up. Of course it was at one of the biggest parts. I was so mad at myself! I will tell you, it was not like it was a boring movie. I am just sleepy. So very sleepy.
The best news ever: I CAN GET MY HEART DEVICE OUT!!!!!!! HORRAY! The cardiologist finally called about my last curl up in a ball on the floor episode, and I told the woman that I really don’t feel the need to have it in anymore. I was diagnosed with POTS. I do not have an irregular heartbeat. I have tachycardia because of the POTS. It is always the same exact thing with every episode. A significant drop in blood pressure and my heart rate goes way up.
She told me she would speak with my electrophysiologist, and gave me a call back that he thought my request was reasonable and they will do it. I am now just waiting on them to call for a surgery appointment. This is a huge relief. As you all know that follow me, this ordeal has been so difficult, and know that I do not want to deal with the cardiologist anymore. I will be happy to check in with my electrophysiologist for check ups, but I don’t want a single thing to do with them anymore. Peace.
Today I am juicing, took a Diflucan, and cleaned a ton after I got done work. I am really glad that I did something active. I had to keep sitting and taking breaks. I got a lot done though! It is frustrating that I am still not remotely well, but it is definitely a good point that although there are negatives such as my legs getting worse, I have had positives as well. I still get cloudy, have a lot of Babesia symptoms, stutter, tic, and my full “Lyme symptom checklist”, but it hasn’t been as bad as I thought it would be. Not at all.
So, come Sunday or Monday, I will be starting up treatment again. I do kind of feel like I am cheating on my LLMD a bit, but I think it was a really good thing for me, taking a little vacation. Sometimes you just need to do what you think is right. Only you know if something is right for you, or if you are missing something, and I am going to advocate for myself all the way. It is all I can do at this point. I need to finally get better, or to at least figure out where I should go from here.
I will try to update a little more often… wishing you all good health. Advocate for yourself. You need to find the answers, and sometimes it takes an army. That is just just what I am planning to do.