Newest findings and treatment

So, remember how I said the doctor was looking at other tick-borne infections that could have happened when I contracted Lyme Disease? Well, come to find out I still have Lyme Disease! It has been "hiding in my biofilm" all this time. All the other doctors that dismissed it because the main test was coming back "not positive" weren't doing the right test and were wrong. So what does this mean? Plenty! It means, we may have found the underlying cause to my POTS, which means if we can cure the Lyme Disease, we may cure or reduce the POTS. It also means there is a hope to feeling better in general. So my doctor has been attending many conferences, online and in person, to learn as much as she can about Lyme Disease. I will share what she has told me. The bacteria that causes Lyme Disease is a spirochete so it can hide itself. The test that most doctors use can only check if it's in the blood, not if it's hiding. It also will not come back negative once you've been infected as it is checking for the antibodies against it not the actual bacteria. Confusing right?
So she found several treatment options, but most of them are costly. So she found a more natural and more cost friendly treatment for me to try. I'll try my best to explain. So for one week I take a supplement called Berberine. The next  week, I use a little bit of stevia as a sweetener and continue taking Berberine. Then depending on how I feel, I either continue taking both or stop taking the stevia if I'm too sick. I do this so that I take the Berberine for a total of six weeks. Then I stop both for two weeks. I'll continue repeating this process until it stops working, kills the bacteria, or I'm strong enough to try a more aggressive approach. Here's my understanding of what I'm doing: the Berberine acts like an antibiotic against the Lyme bacteria, and the stevia pulls it out of hiding so the Berberine can kill it. I take two week breaks so that the Lyme won't try to hide further and will start coming out a little on its own.
What does this mean for me? I'm sick! There is a thing called Herxheimer Reaction that basically says when a treatment is killing the bacteria the person may feel more sick as the body tries to fight everything. So, I am exhausted, feel nauseated and generally sick, and struggle daily to function. But, it means the Berberine should be working. The first round was awful, then I took off  four weeks instead of two (with doctor's permission.) The first two weeks were worse than the six weeks of treatment, the third week was a little better and the fourth week was almost normal. I started the next round and did not start the stevia the second week, the first week was very rough again, the end of the second week was better, so today I took some stevia. I actually said to hubby today that since I feel decent I'll start the stevia to make sure there is bacteria for the Berberine to attack. Seemed like a comical conversation to have "hunny, I feel decent so I'm gong to start making myself feel worse again." Even more comical is that he agreed!
So this is where we are, at this moment. I don't know if weekly updates would be too much, but I'm going to try to update how things are going more often now that I actually have a treatment plan.
Praying you have a blessed week!

Update and "my story"

So I figure I'm due for an update on how I'm doing....
So last I mentioned going on an Activated-B vitamin to Terry to help with the shaking, and let me tell you it helped!! That is until about 2 weeks ago 😞... It isn't quite as bad as it was (daily, sometimes multiple times a day) but a lot more than the maximum of once a week...
I have also had a new surge of complete exhaustion all month, which is why is taking so long to update. I saw the Dr and she ran blood work, including ruling out mono. Apparently, I've had mono at some time in my life and never knew it! Could this be the cause of my POTS? Or could it be the Lyme Disease that I've also had at some time in my life? Within the blood work, she is also testing for some other tick-carried diseases, but I'm still waiting for those results.

Another thing I want to include in this update is from a Bible study that I'm doing. It is the book called "Discovering Hope" by Cindee Snyder Re (no kick-back from this)... And the first chapter talks about writing "your story"... So I've decided to give it a shot and share with you.

So here is my story. I grew up pretty "normal", with my parents divorcing when I was 10. I moved a lot in the first 13 years of my life, but my my parents settled in the same area after that. I went to college, believing that I could be a "career woman". Little did I know that what started when I was younger, became more obvious in high school and became problematic in college, would change that entirely. I've always told people that I am the epitome of the phrase "if you want to hear God laugh, tell him your plans"! He got a nice rolling on the floor laugh at me! As I said, I was going to be a career woman- no children, husband optional, making enough money to have cleaning service, no real need to learn to cook, and so much more. I knew Christ as my Savior from about the time I was 9, but decided that church and bible reading weren't as important while I was in college. I was living the high life with my then fiance, while he made good money and I went to school so I could make good money too. We commented that IF we did have children, I would want to homeschool, but since I was going to have a career that would be hard so again children were taken off the table by me. By the time I graduated college, my condition had gotten so bad that I barely graduated. Plus, my (by this time) husband, got hurt and couldn't do his job. So money got tight and we felt lost. We came back to where our parents live and tried starting over. 2 weeks after we came home, I got pregnant. Remember how I said that I wasn't having children, yeah well abortion and adoption weren't options in my opinion either. So now I'm sicker than I've ever been, pregnant, jobless (both of us), and generally broke! My husband got a job, my dad helped us with a house, my mom helped with bills way more than I wanted to ask, and we went back to church. Now I am still sick, but I get to be a stay-at-home-Mama and school our son at home. Although we aren't rich, so I have to clean and cook, we aren't as flat broke as we once were- we are at least paying our own bills again. As far as what condition do I have? Well first let me explain how you can experience my "episodes". Fast for 3 days, sleep for about 12 hours in those 3 days, go give a few pints of blood, run a marathon, and stand up as fast as you possibly can after the marathon! My quality of life is described as like someone who has COPD, but yet my condition is so rarely known. Notice I said rarely known, not that it is rare... I have Postural Orthostatic Tachycardia Syndrome (POTS for short). It is a Dysautonomia, which means that my autonomic nervous system cannot regulate itself. My body temperature can be way off for no reason, my blood pressure drops dangerously low with little warning, my heart rate spikes anytime I'm upright and sometimes while lying or sitting, among so many other symptoms.

i don't know if you are supposed to gain anything from this, but I felt that this was a good time to share it since I keep saying "I'll get back to that". I don't want pity, just understanding.
Anyway, I pray y'all have a blessed day :)