Tuesday, June 13, 2017

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!

Wednesday, February 1, 2017

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 :)

Wednesday, November 23, 2016

No more stalling

Ok so, no more stalling.... I've been waiting until the perfect inspiration comes to write the best post possible. Guess what happened? I kept finding flaws or thinking it can be better or just thought there's something that should be said first. So I've decided no more stalling!
So the first thing I'll mention is a symptom I had that I think we have found a solution, which makes me ecstatic! I have started getting some odd shakes about 18 months ago and no one could explain it or stop it... A few months ago, I mentioned it to my PCP (I just started seeing her earlier this year) and when I told her my mom says it makes her think of seizures, my Dr mentioned trying an activated B vitamin. She said that sometimes taking a B vitamin isn't enough for people that can't actually activate it on their own and it sounds like it may be my problem. She mentioned one brand, but I couldn't find it locally. After researching I found that another name for activated B is coenzyme B, and started taking it almost 2 months ago. Although I still have the symptom some, it is SO much less... I would have these shakes at least twice a week and now I'm down to every other week or less and the episode doesn't last as long either! Do I think it's a cure for everyone? No. Am I glad that it at least helped one of my symptoms? Absolutely!
Now for Thanksgiving.... Due to husband being on-call and not allowed to leave the house unless called for work, we have to have our Thanksgiving at home. Which means we are doing our own cooking. Thankfully, he plans to help and it's only the 3 of us, no guests. Unfortunately, I've been having some issues with my big toes for months and just had a procedure done that didn't alleviate the pain and added the "post- procedure" pain to it. So walking and standing have been even more difficult than normal...
Today I planned to do some prep work, dishes that are behind, make some gluten-free crusts, boil eggs, etc. It is now 3:30 and I still haven't stepped into the kitchen except to eat breakfast this morning (thankfully my son can make his own lunch). I don't even have any plans for supper tonight! The culprit today? I'm exhausted! I got "plenty" of sleep (didn't go to bed super late and got up when I was ready), but I just can't get motivated. Dr also put me on an adrenal support that I take 2 in the morning with the option to take 1-2 in the afternoon for a boost. So far I haven't noticed any difference even in the morning but going to give taking 1 now a shot to see if I can get some energy for the kitchen work.
Of course my house is still a mess since I've been in too much pain, but I'll have to be content with whatever I can do and be thankful that hubby is understanding! So, now I'm going to go take that vitamin and see what I can do!
Praying y'all have a blessed Thanksgiving with your family and get the rest you need!

Friday, October 14, 2016

My journey so far...

So I figured that in order to be able to write about what is going on in my life, especially in regards to my diagnosis and the treatments that have been tried so far, I need to give some background. I hesitated to write this as I was afraid that it would be boring. However, I realized that if I start talking about things that I am trying or doing without the previous explanation, it would get confusing. So please bear with me here.
Although I wrote a little about my plans for this blog (almost 2 years ago, oopps), I did not fully explain my journey so far between symptoms, diagnosis, treatments or how it has affected my life. So let me begin with diagnosis and treatments, today.
As a child, I was sick often. Little things, minor things mostly, except I constantly had strep throat causing me to have my tonsils removed at 10 years old. I was an active child, participating in a baton corps that also did some dance. I was in parades and competitions for 3 or 4 years. After moving away, in the summer before 8th grade, I did not join another baton group but instead went to cheerleading. I cheered for 3 years, and when I didn't make the squad my junior year, I switched to track. In baton, I occasionally had issues with being light headed, but it was usually attributed to dehydration (I was terrible at drinking, especially water). Then in High School, my light-headedness turned into syncopal episodes. Of course, when it happened during school, the nurse automatically thought low blood sugar and gave me cheese and orange juice. I continued to have issues, sometimes often, other times it would be months with no issues. This continued all through High School and into college. When I was told my job and my degree was at stake while in college, I started going to more specialists. I took off a quarter in college and changed my position at work. I went to several doctors and none of them could actually find a cause. The cardiologist said it was neurological and the neurologist said he thinks it's something like neuro-cardiagenic syncope, that the problem starts with the cardio system. He however, was willing to try to treat me, unlike the cardiologist. So my journey of medicine trials began. I can't even come close to remembering what all was tried, but I do remember that Depakote was helping more than anything. However, about a year after I was prescribed it, we moved to another state and I was no longer able to see the prescribing doctor. Then I got pregnant 2 weeks after the move! I was labeled high risk because I had been diagnosed and treated for Lyme's Disease right before I moved, and I had syncopal episodes. I am still known as "the girl who passed out while pregnant" at my church, even though I am on the praise team and went to the church in my teens. I delivered a healthy baby boy and about 6 months later my depression got so bad that I was hospitalized. The psychologist that was on call quickly figured out that the depression and the syncope had to be related and called in a neurologist. He did test after test for 5 months and when I mentioned my aunt, who is a nurse, knew a coworker that was diagnosed with POTS, he told me that it was something that he thought of before and was willing to test me if I wanted. July 2010, at least 10 years after my first syncope episode, I was diagnosed with POTS!!!!!! It should have been so freeing to have an answer after all those years. And at first, it was. Then I realized that this answer was only another mystery. I have tried at least a dozen medicines that are typical POTS treatments, including beta blockers. I have to admit when he mentioned that the first protocol is to increase the salt intake, I laughed. I eat so much salt, that most doctors would yell at anyone else! When I mentioned that I salt everything, including my pizza, he prescribed my salt tablet to supplement. So far every medicine given to me either had worse side effects, like one made me lethargic, or didn't help my symptoms at all. I mentioned Depakote to this new neurologist, but when he explained how bad it could be long term, I agreed not to use it. Finally in 2015, he admitted that we were past his expertise. I was very saddened, and still am, to lose his as a doctor, but thankful that he was willing to admit his limits. So I went to a larger hospital, where there is supposed to be awesome POTS specialists. The doctor I was originally scheduled to see had an emergency that she had to take a leave for an undetermined amount of time. So I was transferred to another doctor who had the tilt table test reordered and a couple others ordered. After those tests confirmed that I have POTS, the cardiologist and neurologists acted like it was no big deal and my only option was to go there 3 times a week for a minimum of 3 months for cardiac rehab. While I don't have anything against that method, I don't have the means to go there that often for that long while homeschooling my child and living over 90 mins away with one vehicle that my husband takes to work. No one was willing to work with me on finding another location. I even had one doctor tell me that since I am "young, thin and pretty" that I should be fine and will grow out of it because he doesn't have any patients over 40! UGH! Yep, I stopped wasting my time and money trying to see them for no help.
A year later, I found a new primary doctor, needed one closer to my home that wouldn't send me to a specialist for everything, like my previous one did I have POTS and he didn't understand it. This doctor so far is trying hard! As of now, only 4 months in, she has tried changing my diet to see if it could be that simple, it wasn't. She has added some supplements and vitamins because several of my levels are low. Now she is trying some new supplements and researching to have me tested for the possibility that the tick that gave me Lyme's could have given me other parasites that weren't caught. I will write another post soon explaining better what she has tried and it's results so far, but this one is getting long enough!
As I have said, I can't guarantee when I will post, but I do hope it will be better than the previous 20 month delay... Until then, feel free to tell me your story or ask for a particular topic to be covered. I'll do my best!

Friday, September 30, 2016

Well that went well

Hello again!
I can't believe that I let this blog sit for 2.5 years! OOPPS! I did not mean to do that in any way... hmmmm.... Well I am sitting here after midnight, when I should be in bed, trying to figure out how and if I should start this blog again. We see how well it went before and I wasn't e-schooling my son just yet... Now, he is in 1st grade through a virtual school using K-12 curriculum (no kick-back here). I am going to try to restart this, some days I may not have anything to say, other days I may get too busy, but we will see what happens. Hopefully, prayerfully, it will go better than the first attempt!
With that being said... The first thing that I am going to do is share my first planner printable that I created for Dysautonomia Awareness Month (October). I recently bought a Happy Planner and love it! I am slowly getting into decorating the planner and decided that I wanted to have Dysautonomia Awareness stickers for my planner. Since I didn't figure it would be easy to find with how rarely known it is, I figured I should create my own. I didn't have a clue what I was doing when I started, but who knows I may have created a template to make more printables ;)
So here is my first printable for a Happy Planner. 
Dysautonomia Awareness Stickers for Happy Planner



Free for Personal Use Only. I hope you like (some can be used without it being for Dysautonomia Awareness). Lots of turquoise as that is the awareness color.Well it is time for me to call it a night. That little boy of mine gets up early enough ;)
Thanks for checking out my new endeavor

Sunday, February 23, 2014

Hello

First I want to give a little background to explain the reason for this blog. That has to start with "What is P.O.T.S.?" It also needs to explain what it has to do with me and what I plan to do. And I will apologize in advance if I seem all over the place, I'm trying to keep it "linear".

Simply put, P.O.T.S. is a autonomic dysfunction. This means that the autonomic system (your unconscious but necessary functions, such as breathing, heart beating and such) is not working properly. In my case it is my blood pressure that doesn't work correctly. Unfortunately this does not mean that the problem stops there. I will pass out because my blood pressure will drop too low, and due to these episodes my brain function is starting to diminish. I don't have the cognitive thinking that I am supposed to have anymore, and since I am only 27 I can't blame it on age. I also get very short of breath easily. I'm exhausted, depressed, anxious and physically sick in many other ways that don't seem to relate to each other, but they are common for P.O.T.S.

I have been told for a very long time that there is a reason that God has allowed me to continue to have P.O.T.S. Yes, I've gone through the "ignore-it" stage, the angry stage, the defeated stage and I am finally getting into the acceptance stage. For those that personally know me, you will see that this is NOT an easy stage for me. I am stubborn, bull-headed and a perfectionist. You may wonder what these qualities have to do with making this stage difficult for me, so let me explain. I am stubborn and bull-headed so I want things my way and my way only! If it does not fit into my plan or ideal situation I will find a way to change it! There is no changing this, no matter how much I dislike it. This is a subconscious problem, therefore I can't will it to be any different. Perfectionism is affected because it is very tough to be the "image of perfect" when you pass out while standing in front of the congregation singing in church (I've done it more times than I care to count). Perfectionism doesn't allow for forgetting that the item you are holding in your hand is called a pen (also done this, and similar, more times than I care to count). Perfection also doesn't include the inability to take care of your child for one reason or another, this was truly the hardest for me.

Shortly before being diagnosed, after dealing with the unknown for 8 years, I became pregnant with my son. I was not planning to have children, but he was still a welcome surprise for my husband and I. I ended up in the hospital for extreme depression when he was only 6 months old. The doctor couldn't believe that it was simply post-partum, or simple depression (not that any depression is simple). He really felt that it was caused by something. So he had some tests done and brought in a neurologist who had many more tests done. Four months later, we discovered that I have P.O.T.S. This is now 10 years after I first started dealing with passing out while in High School!

Now that I know that I can't work again, hard pill to swallow when I paid over $75K to earn a BFA in Interior Design and never got a chance to do anything in my field, I have more time on my hands. So I took up crocheting, and have had a blast learning from books. I have even started dabbling in pattern writing, which has been an interesting process as well (I'll get into that another time). I have just started teaching myself knitting, YouTube has been my friend on that. But the most important thing that I do with my time is raising my son. I hope and plan to homeschool him, despite my disability. I am going to use K-12 so that it will be a little easier for me, but I want to be a very large part of his schooling. He will still be involved in church and sports and other ways of socializing, but it will be a little more controlled and his curriculum will be a lot more personalized.

So I am asking you to join me on this journey. I will write about my struggles, my triumphs and other various happenings. I ask that you share your struggles, triumphs and other happenings as well. If you have something that you would like me to address, let me know and I will see what I can do.
I will try to blog often, but due to the cognitive issue, it may take me longer to address a particular topic.