I have been ridiculously busy lately, especially with work. I have definitely been slacking on keeping up with my updates. I have positive news though! No news is good news, right?
I had an appointment with my favorite Lyme literate naturopath a few weeks ago. We are still trying to figure out my complex puzzle, and he believes a part of my issues I am facing is drug induced mitochondrial dysfunction, which is kind of our main focus now, along with working on my gut infection, and Bartonella, which has slowly begun to rear its ugly head yet again. Super sucky.
Backtracking… What is mitochondrial dysfunction you may ask? Well, I will do my darndest to explain it correctly. Google to the rescue!
Mitochondria are a big part of your energy production. A huge part. Whole systems can fail if these cells begin to die and it can affect your entire body and its organs.
Antibiotics can cause cell death to mitochondria, and being on enough antibiotics to kill a horse for nearly 4 years, it is likely that this is could be one of the culprits as to why I am still not fully better and very much a work in progress.
Mitochondrial issues very well overlap a lot of Lyme symptoms. It is nearly impossible to know what is what, but it is certainly worth giving this a shot having it be a main focus for awhile.
It was once believed that mitochondria could not come back, but over time they can replenish. Hooray! This may take a very long time, but this is positive that I will get my little energy cells back. So, more supplements of course.
It is insane that I am not even on treatment and I take upward of 60-70 pills a day. I guess it helps me with my daily water intake 😉 Silver linings.
Honestly, right now a lot of my supplements I am suppose to take three times a day, I have been taking two times a day. I am afraid my timing is off, and the ones with food, without food… I dunno, I don’t really feel like eating anything after midnight when I go to bed. I know that probably sounds bad and non-compliant of me, but I am trying to keep up with everything on a “timely basis”.
As for the Bartonella that is creeping back, I am just using an herbal now to try to keep it at bay so I don’t have to be on antibiotics and continue to heal my stomach.
I did hear possibly the very best thing ever during my appointment. Dr S. said to me, “I think this might take a long time but I’m pretty confident we can get you much better or fixed.”
Even being under the care of one of the top LLMD’s in the country, the goal has always been 80-85% functional and that was it for me. I was told that is all there would ever be.
Realistically, I know some things might not go away completely, but in the near 4 years of treatment I’ve never heard anything like that.
Way to go Dr S. for making sure I still have my butterflies, rainbows, and unicorns mentality! Yesssss!
I am still babying my stomach. It hasn’t been perfect, but it is certainly improving. I have been doing well with my diet and the bloated look is definitely beginning to improve. Every once in awhile, I break my own rules and eat something I know I shouldn’t, example, I stuffed my face with Chinese food last night. All the bad stuff that even on IVs I wouldn’t eat.
It was friggin delicious and sometimes I feel like you have to break the rules for the sake of sanity, but I can tell a huge difference in my energy level, my head hurts, and I am just plain foggy. Needless to say, tonight will be a salad and vegan chicken night. Time to jump back on the horse and get back on track.
Bartonella as I had mentioned has also been one of my issues lately. It generally messes with my head in a lot of ways. Paranoia, hallucinations, anxiety, OCD, and oh gosh do my feet hurt at night.
Dave, my wonderful husband, is a trooper and uses his knuckles full force on the soles of my feet to get the knots out at night.
Dr S gave me an herbal tincture called Houttunia, and I think it is infused with something (Samento perhaps?) Well, anywho, I completely underestimated this tincture.
I was told to take one drop, and slowly work myself up to 15 drops a day. Yeah. I made the assumption that starting at one drop was the “I’m a pussy” dose, and started with five-ish. I say five-ish because I kind of just squirted a guesstimate of five drops in my mouth.
Word of the wise: listen to your doctor. LOL
I ended up with stabbing stomach pain, all my Bartonella symptoms flared, I was completely wiped out. It quickly brought back all the the days I am so used to. Sitting in my car at the bank or grocery store parking lot, and having to drive home because there is just no way I would be able to get out of my car. Needless to say, I took a few day break and started SLOWLY, and I haven’t had any issues since. I am still flaring, but it is tolerable.
Clumsy me, I fell again and ended up with a big ol’ bruise on my leg. My house is a single story ranch, and our back porch has one step and another single step further back, of course when I went down I hit the one of two steps then tumbled. Oy vey.
It is super annoying when my legs just give out. I feel as if they are like “just kidding!”, and I go down like a sack of taters.
I had an appointment with my dermatologist for my heart scar. It turns out it is a keloid. It sounds like it isn’t worth a surgery as it can easily come back and worse. Plus I could have to cut everything out, so I would be left with a bigger even grosser scar. It kind of felt like he wanted to line his pockets with money, as I did a little research and found out many plastic surgeons would not cut it out for this very reason. Of course, it isn’t covered by insurance anyway.
Scars I personally feel are pretty badass and tell a story about you, but this one is kind of “icky”. Haha. I will just live with it.
He also offered steroid injections, but I don’t really think that is warranted either.
I know you aren’t suppose to take steroids with Lyme disease, but sometimes in certain cases you have to outweigh the good and bad in particular situations, and this certainly isn’t one of them. Totally not worth it.
Now onto the good. 🙂
I have had some great days. As I had mentioned, I have worked much more. A lot more. I kind of haven’t had a choice as things needed to be done, but have done really well on staying focused, with the small exception of a few days I had to leave out of frustration or pick and choose what I absolutely needed to get done for the day.
Those are the kind of days I swear at the quarterly government reports because I have a total brain fart and once I get frusterated, I get all flustered and I need to leave and come back to it later. I have done the same reports for going on 10 years, they used to be so easy peasy for me. They are, if I am not in a foggy trance.
I would consider myself much more normal at least visibly. My friends had a small barbeque, and you wouldn’t likely be able to tell I am sick in any way. I even did a little dancing!
I have been moving around more, using the pool for exercising. This made me quickly learn that not only my legs are out of shape, I have also lost all muscle strength in my arms. It’ll come back to me. The more I try to do, the more it will come back and I am hoping that I will be more functional.
I even made it to Home Depot the other day!! Not only is it a big store, the lighting is terrible for someone with a lot of light sensitivity.
After awhile I began to get really fuzzy and dizzy, but I did a lot of walking and dream shopping since there is just no way I can afford anything in there. Haha. I was able to stay until Dave got everything he needed and there was no emergency rush out to his truck. Phew.
Last time we went to a Lowe’s, Dave literally threw me on one of those rolling pallet things and took me out to his truck. I had completely collapsed. I must have been a sight for sore eyes as he wheeled me out of the store, while I was a hot mess laying on the pallet.
I conquered the trip this time, and I was there much longer. Things are never going to change unless I start getting back out there into the world. I would rather fail a few times (or a lot of times) and say I tried at least.
I did a big grocery shopping trip with Dave! We usually stick to the tiny store in our town, but we ventured out of town. I did great. No having to leave, no dizziness. We didn’t have to rush. It was awesome.
It wiped me out by the time I got home so I took a nap but look at what I am accomplishing! There is no doubt I am moving around much more.
This comes to an important point with all of this. Kimmiecakes rant of the day. I know some will probably take offense, and believe me I have been through hell and back, and it has kept me going and fighting.
Keep pushing. It may be hard, but doing just a little extra is great for the mind, and your body.
If you think about it, I have had years and years of doing absolutely nothing. A vegetable at one point, a wheelchair, not moving around at all. Muscles are definitely toast. Everything is weak and depleted.
I know it might come across as an asshole thing to say, but mind over matter it. Do something every single day. One little thing. Anything.
Even if it is sitting outside for awhile. Just an extra push. I have talked to sooo many Lyme patients over the years, and I can tell when there is night and day differences in attitudes it plays out in a link to their health.
It is kind of bizarre, but many a time, I see those who let this terrible disease consume them, eat them alive, and let it define them not heal. These are the people who just don’t see the silver linings in anything. There is ALWAYS silver linings.
You all have the power to do one little thing that will change your day. No matter how big or small, it is still an accomplishment. Give yourself credit with what you CAN do and focus on that. Push. Fight. Kick some ass!
Granted, this disease is ridiculously complex so there is so many things to consider, but I have seen those people are often the ones who stay sick.
Hell, I am a medical mystery as dubbed by all of my doctors, but just look, after over 25 years of infection I am finally starting to see some improvements. I got told some amazing news and I have such high hopes that this is not going to be forever. I think my body is beginning to want to heal itself. Turtles pace, but in the right direction.
Your mind is an important part of healing. Do not let this define you. I am a firm believer in that.
End rant. Or motivational speech? I don’t know, but it has been on my mind lately upon speaking with some current patients and it makes me cringe. We are all allowed a bad day or two, to be angry at the world, but I got into it trying to help someone look at the world in a new perspective and she just wasn’t feeling it. Oh well.
I hope it serves at least a few of you well! It is hot as Hades outside now, but have a seat in the shade, read a book, walk to your mailbox, sit at a table and prepare dinner (I did this for years!), take a bath, anything! We are all effected in different ways, so what you are able to do is likely different compared to someone else. Just do it J
P.S. I will give another update hopefully soon! I had yet another visit with Dr S and will have much more to share! I’m a little behind the times 😛 Happy Sunday.
Ahh! Miss Olive! I almost forgot about you. She is doing great, I even left her out for the first time to take a shower and she surrounded herself with toys.. caused no trouble! She’s 50 pounds now!!