Big changes

A bit over a year ago, I got diagnosed with lyme disease and a co-infection, bartonella. This came right after a tick bite and sudden severe symptoms. However, it was determined this was actually the second time I got lyme, just the first time I was being treated for it. Back in college I got the rash with symptoms, but wasn't treated properly for it (getting proper lyme treatment is like finding a needle in a haystack and I knew next to nothing about healthcare back then). Thus, it laid dormant in my system until pneumonia took me down, setting off MG, and starting the battle of chronic illness in 2010. What this means is the fight against lyme disease will take a very very long time, if not forever, never fully beating it, outside a miracle, but fighting to keep it from completely taking me down. For 13 months, I've been fighting it with pharmaceuticals but now a page has turned and I pray this is the start of a new chapter, a better chapter, in my life.

As I previously talked about, I'm currently in a very strict elimination diet as so many foods, especially "food" that is GMO, processed, sugary stuff, can make your health much worse. We are attempting to find hidden sensitivities while making a permanent change in taking "eating healthy" up yet another notch. And 3 days ago, we made another big change.

I am no longer on any prescription medication. Yay and eek at the same time. You see, your body, your gut, is filled with both good and bad bacteria. You need to have enough good bacteria in order to be healthy. It is said auto-immune diseases have a lot to do with the gut. If there is not enough good bacteria, you just won't be able to truly get healthy. Probiotics can help but really that's not nearly enough. In lyme disease, antibiotics are used to kill the lyme. It's absolutely necessary to kill the lyme otherwise the lyme can kill you. But antibiotics don't just kill the lyme, they also kill the good bacteria. Thus, antibiotics really ruin your gut.

3 days ago prescription medication was stopped and replaced with an herbal protocol. But its far from simple or mild. This stuff is powerful, I mean it kills lyme! And since lyme can kill you, that must be really powerful stuff. The good thing is its natural meaning it's from nature, not filled with toxic unknown ingredients like pharmaceuticals. It should help heal my gut. The bad thing is, well actually quite a lot unfortunately. It is very expensive, even with financial assistance I was able to qualify for. It can cause herxing just like prescription meds do. Herxing is when you are killing the bacteria and your body becomes so overloaded by those toxins that your symptoms get much worse before they get any better. This can happen over and over and its pretty unpredictable. It can get so bad you can't get out of bed. But the hardest part, I feel, is going to be the schedule.

I'm a very organized, scheduled person, some may say OCD, but this is even a bit crazy for me. I have a booklet with charts of which herbals to take when. I will have a total of about 10 herbals. This is in addition to about 10 other supplements and one over the counter for allergies still not under control from anything else. Here's the thing. First, these herbals are liquids and when I have to take a dose I have to put a specific number of drops of each one into a glass container of water, let it sit at least a minute, then drink it. This means taking meds on the go is not as simple as a pill case anymore. Second, I have to take various herbals a half hour before breakfast, a half hour before lunch, a half hour before dinner, and at bedtime. But then I have to take my other supplements a half hour after each meal in order to be an hour away from herbals. Two supplements I have to take with a light snack. One supplement I have to take a half hour before eating but it has to be a snack since a half hour before each meal is already filled with herbals. Lastly, I have to take yet another supplement four hours before herbals. I seriously have my phone alarm set for 5 different times throughout the day to keep up with all this. And apparently you really have to follow it closely for it to work. This protocol is to last on average about 5-7 months, sometimes 9, and it can be extended. The point is to get symptoms reduced that you feel fairly normal. At that point, you continue the protocol for 2 more months and if symptoms stay away, you can stop. Of course if symptoms come back, which they most likely will at some point in life, it means back on either antibiotics, herbals or another type of protocol in order to fight back again.

This makes it very hard to figure out how to go anywhere, especially to figure out travel. Not a big fan of this dilemma seeing as there's a certain someone who lives all the way in Tennessee. So maybe I should just go stay in Tennessee for a while... oh but wait, there's more news.

So I don't know whether to qualify this as good news or bad news, but here it is. Of course it comes with a back story. Part of Myasthenia Gravis is that it affects the diagram muscles. My breathing is no where near a healthy person because my muscles don't work right. This is why I have to be so cautious around allergens, fumes, humidity, heat, or anything that can make it harder for me to breathe because it's already hard. The harder I work my diagram the quicker it will fail me. One issue is that overnight I breathe extremely shallow, because of my diagram and the inability to consciously breathe deeper. So the oxygen is not flowing through my body as easily as it should. When I wake up each morning, my body feels like it was run over by a truck and I really can't move. It takes anywhere from minutes to hours that I just have to lay in bed until I can get enough oxygen flowing through me to get my body going again.

Well, my neurologist (the doctor who also has me on this diet and wanted me off the antibiotics), wanted to try again to qualify me for a breathing machine overnight. Another doctor tried once before and I got 51%. You need 50% or below to qualify. Insurance is ridiculous! Today, a respiratory therapist came to the house and did some testing. Basically it tests how well I can breathe laying down, while awake, which means it will be even worse while asleep. I averaged about 38%. Yikes. That definitely qualifies me, but its also pretty crazy to think that's how bad my breathing is. I thought I'd be getting a bipap machine. A c-pap forces air into you and is not good for MG because we aren't strong enough to get that air back out. A bipap forces air both in and out to help breathe for you. Well, I guess I'm getting even a step above that, some type of non-invasive ventilator, yikes again. So this thing will pretty much make sure I'm breathing as I should be overnight. The respiratory therapist said once I get used to it I will not only sleep better but I should wake up feeling much stronger and not have to lay there for hours. My body should work for me immediately! Yay!

Where the news about traveling for this comes in is that the respiratory therapist has to come see me once a month to do testing and adjust everything. And well, carrying around  a 13 pound machine lol.

So that's that. A lot of slightly overwhelming big changes right now. I'm trying to tell myself just stay put for the time being and get through this, with the hope that several months down the road I'll be feeling better and stronger, enough to travel more and live life in a more normal active way. If that ends up being the case then I guess this all was worth it.

Let's pray all these changes are the start to something amazing. As well as not forgetting to pray that that brain hemorrhage, by the grace and miraculous healing power of God, just goes completely away without harm. And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Romans 8:28 I'm hanging on to that verse right now, holding on tightly to His promises.  And another one. Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours. Mark 11:24 I believe it and I receive it Lord! By your wounds I am healed! Thank you Jesus! Amen!