ER Again & Different Direction

Well, I tried not to go to the emergency room because we all know what happened last time. However, when you literally feel like your body is going to give out, what do you do? My sweet neighbor took me and this experience was actually very different. I was just there to make sure I was not experiencing a Thyroid Storm or Adrenal Crisis. They were not busy so I feel like I got a lot of extra attention. My room was nice, the NP was nice, my nurses were nice, and the doctor was an absolute angel. He kindly went over all my tests and vitals and basically said they've tested to make sure that my body is NOT going to give out, but I should follow up with specialty testing. They actually did a lot more tests on me this time than they did last time, which I appreciate.

So, I was discharged and I do NOT feel better. I keep getting waves of dying. I don't know how to explain it other than I feel like I'm dying. It's an empty, floating, dark feeling. My lungs and heart do NOT feel right, my limbs don't feel right, my soul doesn't even feel right.

I called my current osteopath who has been treating me and had such a hard time trying to explain what I was experiencing. The only thing she could come up with was I had a panic attack. I told her I know what those are because I had them a lot when I was a teenager, and these "episodes" are happening when I am completely relaxed. I maintain a lot of peace in my life. Quite frankly, I was upset and heartbroken that she would say that. I guess I didn't explain myself very well. We both agree LDI could not have done this, though.

So, I have come to the conclusion that everything I am doing is not making a difference. I have suddenly gotten so bad and there are no answers as to why. Maybe I have gotten handle on my Lyme disease? I think I know what Lyme symptoms feel like and the past few days have been SO different.

So, I have stopped ALL supplements, detoxes, medicines, EVERYTHING. I am just thinking if I need to go in a different direction. I am no different with or without treatment lately. This may sound hypocritical and contradict a lot of what I have previously talked about, and I may just not be in my right mind, but when I REALLY think about it, my 30% better is all I was going to get from Lyme treatments for now. Something else has happened. Something else is wrong.

So, my neighbor and dear friend, who was critically and chronically ill for a decade (wheelchair, oxygen, feeding tube, etc) is helping change my path. She is doing very well now and has so much knowledge and wisdom. We have so many similarities as well so I definitely trust her. She helped me make appointments with new doctors.

So maybe the Lyme is basically cleaned up for the most part and I now have serious damage from it or even maybe from treatments. Maybe my thyroid or adrenals couldn't take anymore. Maybe I have a separate stomach problem. New doctors will help me. Or maybe an LDI flare just maybe shut down and chicken out.

For now, I am basically worthless. I can almost always do small chores and drive short distances. I did drive a short distance once today and I did do my hair, but that's all she wrote. I guess I managed to shower last night, too.

I just truly don't believe Lyme could suddenly out of nowhere destroy me when I did treatment for a whole year. I will keep this blog updated as I pursue new avenues. Like I've said before, it's never JUST Lyme Disease, and I will just have to be patient and figure out what else is wrong. I do have Lyme, and this probably is a flare, but I think I need more help regardless.

Low Dose Immunotherapy

I told my doc I really haven't been seeing any improvements. So, we decided on a whim to do an LDI shot, which is a low dose immunotherapy injection of dead Lyme antigens in attempt to calm the overactive immune system to the disease. Makes sense. So, the shot HURT. I burst into tears. I really don't cry as much as I could, and probably not as much as I should considering all the turmoil of this mad cow disease as I like to call it. My dose was 8C, which I've heard is high. 

The next day, I had lifted brain fog. It was noticeable. It really was. It was kinda scary. I was having flashbacks of times when my brain worked. Like when I was a dance teacher and a receptionist and could do a million things at once in fast forward, and it was all seemingly perfect. So, I was able to compile tax documents this day and it was good. I do think the combo of the good weather, iodine, B12 shot, and Ozone may have helped a little, so I had a lot going for me, but I don't remember my brain working THAT well. 

However, now two weeks have gone by and I am WORSE! Worse than I was before I had the shot. I feel as awful as I did when I first found out I had Lyme and started treatment. I am in emotional hell. I have cried so much and have felt serious doom. I am usually VERY positive and stomp through life with my head held high through all of this, but my ability to do so has crumbled. I wake up shaking so bad. It's such an awful jolt to feel right when waking up. It's so hard on me. I've been having tachycardia, too, which drives me insane. I hate it so bad. My stomach is flaring. My lungs are BURNING and don't feel like they're inflating. My head is shaking "no". My left hand doesn't grab things right and I've noticed I hold it in a seized, twisted position up by my chest a lot. My left eye and eyelids feel completely off. My thoughts get so screwy and they go to really dark places that I don't even recognize and it scares the living daylights out of me. My BPV (benign positional vertigo) and POTS (postural orthostatic tachycardia syndrome) are both flaring miserably. My nightmares are bad, my legs are on fire, and my short term memory has completely fallen out of my head, my joints are shifting all over the place. I have these heart/stomach lurches. Like when you are struck with fear. But I am literally laying in my bed feeling, doing, and thinking of NOTHING when they occur. I swear my vagus nerve is compromised, too. My husband dropped me off at the store so I could ride the little grocery cart old people scooter thing to grab an item yesterday. I literally got lost, bought 4 things, didn't know why I was in there, and failed to buy the one item I went in to get. Also, why do my lips turn purple/blue so much??? Too many symptoms can drive an already mad brain even madder. It's maddening. I swear if I hear a normal person say, "Ugh, work was stressful, I have a headache", I am going to SLAP them. What I wouldn't GIVE to have a headache from a stressful work day!!

Today has been exceptionally bad. I can almost ALWAYS do small chores around the house, but today any attempt did me in. My lungs burned and my heart raced and my limbs went weak from trying to accomplish the most measly things. Now, these aren't nice, tired, exhausted feelings you get from working out and you feel like you're gonna sleep really good tonight. These are feelings like my spirit wants out of my body. Like my cardiovascular system is about to fail me. This was BAD today and it scared me. I do not scare easily. I literally thought so many times today that someone was going to find me on the floor. I HATE those thoughts. I don't want them. But when your physical, emotional, mental, and even spiritual aspects of everything that makes up your body and soul is hijacked by bug poison, you literally feel like there is nothing left in you to go on. 

Now, it is that time of the month, so some of this madness can and is contributing to this flare, but I really do blame this LDI shot. What I really don't like is each day is getting worse. It is scary to be worse the next day than you were before. This needs to stop. When will it stop? My health has been like 10% when I am usually like 30-40%

I read in multiple places that one is to stop "killing" protocols while doing this shot so you can accurately feel what it's doing to you. My doc didn't say anything about this, and now I am regretting stopping things that I think were good to me and may have been helping me. My Lypo C, my Silver, my Artemisinin. My Results RNA. Would they have made me worse or better if I stayed on them during this? How the heck am I supposed to know? This is all trial and error and it is maddening. I want simple physical ailments so bad. I want to be a normal person with a normal disease. Not sure what that means, but this is too hard some days. TODAY it is TOO HARD. I kept checking my skin color, my pulse, my blood pressure, etc today. I kept "keeping an eye on myself". 

To be honest I did not want to write any of this. I want to curl up in a ball and delete these thoughts and words and feelings. But it's important. It's important for other Lymies to read this. It's important for me to look back on WHEN I am well. I say WHEN despite the fact that there is ZERO light at the end of this tunnel as of this very moment in time. If hope is lost, then all is lost. 

I did tell myself today that if Lyme was going to kill me, it would have by now. Even though I really actually do feel like I AM dying (no exaggerating whatsoever), I would have been dead by now. I also think that death is probably peaceful. I DO NOT feel peace right now, therefore, I should be good. 

P.S. I honestly have heard SO many GOOD stories about LDI shots. I really do think mine was just WAY too high.