NUCCA

A friend heard of my symptoms and recommended I go see her NUCCA Chiropractor. She says it's a very different, specific kind of chiropractic work for structural/nervous system issues that deals mainly with the base of the skull. So, an upper cervical chiropractor. 

So, I went today and I explained to the doc about the last two and a half years of my life that basically crumbled to pieces after injuring my sacrotuberous ligament on vacation. I told him I'd seen 30 doctors, taken hundreds of supplements, treated Lyme disease naturally and aggressively for an entire year, and still struggle with Dysautonomia and alignment issues. He said he thinks he can help.

So, we do X-Rays and he finds my atlas, which is basically between your spine and your skull, is totally off, and one part of my neck is 9 degrees off. He said of the four levels of severity of this condition, mine is the worst. He said most new NUCCA chiropractors would be "biting their nails" at the site of this, but he'd been doing it for a decade and was not worried. He put me on a weird scale which showed most of my body weight was distributed to my left side, and that there was a LOT of compensating going on. He said my right leg appeared an inch shorter, my arms hung differently, etc. I don't think I knocked my neck out of place, and I don't think I was born with this condition, but rather my SI joints have been so all over the place, it was affecting my neck? I wish I was better at understanding and describing this. 

So, I laid down on this weird, short chiropractic table on my left side and he pushed around my right ear, and then took more X-Rays, and we saw some stuff moved back well. However, the part that was 9 degrees off only moved back 1 degree. Wow I'm not good at explaining this. So, we did one more adjustment and sent me on my way. I'll be back next week. 

I think I plan on doing this for all of April until I go to Kansas. It's strange to do something I'm not familiar with, and I'm so used to my regular, beloved chiropractor so it's different to have someone else work on me. I figure why not continue and give this a chance, though. I'm not well, and this isn't an avenue I've pursued. Plus, it makes sense to me. The chiropractor is very nice and seems to be very knowledgable and honest, so we'll see what this brings. I guess I don't feel any different so far except for maybe a little vagus nerve irritation, grogginess, and I actually did take a little nap when I got home. It's hard to know with this horrible weather, and I think my iron might be a little low. 

We'll see. I'm always grateful for new avenues. 

Booked for May

Well, after much thought, time, prayer, meditation, etc, I have officially decided to do 3 weeks of Lyme "repairing" in Kansas instead of 5 weeks of repairing in Idaho. The West Clinic has been awesome, and I appreciate everything they've done for me. Their staff is absolutely pristine, and to be honest, I will REALLY miss them. However, there is different technology at The Hansa Center in Kansas that I feel may better suit me. Especially when it comes to Dysautonomia. So, the trip has been booked (travel, hotels, treatment, etc). Pretty sure it's safe to say we are going to be in credit card debt for the rest of our lives with this treatment, but I have to do SOMETHING. Can we afford this treatment? No. However, we couldn't afford the $25,000+ we spent on my treatments last year, either. I just have to have faith. My health is worth the debt. It just is. If you don't have your health, you don't have anything. I feel such an unbearable amount of guilt from the fact that the majority of my poor husband's hard earned money goes toward this wild goose chase of health that we're on. It's difficult for so many to grasp the fact that insurance doesn't pay for these kinds of disorders. Sure, they pay for things that DON'T WORK, and do more harm than good, but will they pay for something that actually stands a chance at making a positive, maybe even permanent impact? NO! Probably because healthy people aren't PROFITABLE! So, credit card debt it is. Once I am better (whenever that will be), I vow to get a job and work my butt off paying off all this debt I've accrued. I also just vow to get better.

I will be away from home for 22 days. TWENTY TWO DAYS! How am I even supposed to function that long without my dogs? My bed? My house? Luckily, I'll be with family most of the time.

My condition has become much worse. SOMETHING has become worse this past month. I can't describe it and I HATE that I can't describe it. Like right now I am having some debilitating silent migraine I THINK that may have stemmed from silent reflux I THINK which is do to my dysfunctional autonomic system I THINK. The weather and my cycle is taking a massive toll on me again.

I don't even really know what to do with myself for the next seven weeks until I go to the Hansa Center except for take iron, magnesium, B12 shots, drink water, find a balance between couch potato and dragging myself up and down stairs and up and down the hall.....Oh, and drink Chaga tea. I've heard good things about it so I figure I'd try it.

Possible Dormancy

I went back to the West Clinic for a check up and we looked at my blood on the microscope. We saw NO Lyme bacteria except for one in it's dormant state (bottom left corner of the microscope slides above). I flat out asked the doc if he thought I was in remission. He basically said yes, and I basically feel like I am. Maybe not 100% since there's no cure, but I'm probably as close as I'm gonna get after an entire year of Lyme killing with SERIOUS Vitamin C, Silver, Artemisinin, Hydrochloric Acid, Hydrogen Peroxide, Ozone, etc. I never used antibiotics. I have the option to use Minocycline right now but I will really have to think about it. 

This is awkward because it seems achieving remission should be cause for celebration, HOWEVER, I am left with such neurological damage that I cannot be any kind of joyous. I feel the same if not worse. The doc and I agreed that there is a lot of "cleaning up" to do. To me, this means trying to reverse my Dysautonomia. So, the doc says what they can do is a 5 week, 10 treatment "cellular repair" therapy with a light IV. I forget the name of it. Also, some supplements he gives to his MS patients. He didn't seem to say a lot about Dysautonomia but maybe it's because not a lot to be done about it? Not sure how much help this will be in that area, but I do think my cells could use some help.

So, I had my first light therapy and something WEIRD happened. I started getting really heavy headed and woozy and asked the nurses to check my blood pressure, which showed like 88/57 or something. This was like half way into the therapy. So, they stopped the light and gave me extra saline. They all said nobody has ever had a reaction to the light like that, and it was very strange and unheard of by everyone. So, I'm trying to think of other causes for the weird "episode". I think maybe I got hit with a migraine and/or postprandial hypotension (I had just eaten too much of something I probably shouldn't have). I had been talking too much too fast to a new POTS buddy next to me, and my legs probably should have been up. I also possibly could have been dehydrated. I think even all the driving and elevators I had been in and broken sleep could have played a factor, too. Or MAYBE it was just a plain 'ol herx. It's hard to know. I have so much going on, and to be honest, I'm not sure I blame the light all that much. Postprandial hypotension can actually cause silent migraines and the florescent lights in the room and talking more than my oxygen would allow did not help. Maybe even the pain from the needle affected me more than usual. The needle for this therapy is bigger than regular IV needles. With all that being said, I am going to try this therapy again. I just don't think this light therapy can HURT me, and everyone else in the office seemed to agree. I will just see next week if I can prepare better and take precautions and be in a better physical state. No talking, legs up, not a lot of food, plenty of water, florescent lights OFF, etc.

I had an awful time when I got home. My head just feels so heavy. I feel like I have benign positional vertigo. Just worthlessness and emptiness and weakness. I took a speck of a sleeping pill but woke up with maybe silent gerd and panic an hour after I fell asleep? I'm not sure what was happening. I kept falling asleep sitting up but I wasn't actually sleeping. It was so tormenting because I was so tired and wanted to sleep so bad but I was convulsing a little bit with a burning stomach and heavy, dizzy head. It's on a whole other level of regular "sick" feeling. It's more of a body failing feeling. I have just been malfunctioning lately. 

So, today I have had somewhat ok moments in neutral temperature with no stresses or exertions. My chiropractor worked on my neck which helped me a bit, and my SI joints. I was grateful my body allowed me to drive down to her. 

So, I guess my plan going forward is:

B12 shots-They seem to help and my mom is a nurse so she can give them to me

Salt Water-Hopefully to help with hypovolemia if that is contributing to POTS

WATER-I think I need to drink more water than most people

Iron-My red blood cells need help

Maybe a little thyroid med MAYBE. Still don't know how I feel about this.

Some cellular repair supplements my doc will give me in addition to the light therapy 

I will probably still do infrared sauna for numerous reasons, as well as Ionic Foot Spa

MAGNESIUM-I have not been keeping up on this and I think I notice a difference when I don't

I may try hyperbaric oxygen chamber therapy. My osteopath has one. We saw in my microscope that my blood is stacked a lot (rouleaux). Not sure what can be done about it but I would assume oxygen would help. I do feel like my blood cells are NOT adequately carrying oxygen around my body. I will email her and see what she thinks. 

Anyway. Still a lot of suffering. There is a clinic in Kansas I might want to go to if all of my current plans fail. I just need to be patient and I just need to keep trying and see where God leads me. 

Checking Out Of The Wellness Center (for now)

So, I seem to have a pattern. I spend about six months at clinics/wellness centers, and then move on because I don't see the improvement that I need. Today was the 6 month mark at the fourth health center I've been to, and I basically kind of had an exit appointment with my osteopath.

I didn't really know what to do or say at this appointment. I went in and showed her my lab results from my family doctor and the ER. She told me my adrenals (despite having all the symptoms of adrenal issues) really are completely fine. She did notice my iron was low, and drew labs for T3 and T4 today, but really there was no indication on paper as to why I am crashing with new, scary symptoms.

So, we did some muscle testing and it came up with trapped emotions (severe fear/guilt that I'm an inadequate mother/wife), possible T3/T4 imbalance, and a moderate/low Lyme bacteria load. I told her I do feel like my Lyme has tapered off, and that something else was surfacing. So I asked her to test me for Dysautonomia, and we got a huge YES response. She tested me for POTS symptoms and I did have them. I've had these conditions in the back of my mind, but Lyme always overshadowed them. I think it may be time to switch gears. Maybe put Lyme on the back burner, and Dysautonomia in the forefront. I know muscle testing is not 100% accurate, and this may end up being the wrong direction, but when we have NOTHING else to go off of, why not trust energy, instinct, God, and our bodies?

So, somehow I want to focus on Dysautonomia/POTS, which Lyme can cause, as well as trauma (I HAVE BOTH). I don't think there's anything my osteopath can do about it and we agreed there's not really any point in continuing to get IV's when they're not doing anything. I just have to say she is a very wise, wonderful lady, and she did her very best to exhaust all options. She let me lead the way when she felt I should, and I let her lead the way when I thought she should. She tested me for things nobody else did, and we did find lots of new issues. I learned a lot these last few months I was there, and have absolutely fallen in love with the staff. They have been my sweet, wonderful, buddies and I am really going to miss them. I may come back another time if I find a reason to. Even if it is just because I miss the staff.

Well, I have a plan I guess. Even though my parasympathetic nervous system is completely on the fritz, I must continue to plow through. To explore all avenues and exhaust all options. Even though it's scary to fall asleep, even though it's scary to wake up, I HAVE to remain hopeful and I have to keep trying. Even though I'm so dizzy, so weak, so empty, and so tired of trying to act normal around friends and family, I have to plow through. Even though I have stroke symptoms, MS symptoms, Parkinsons symptoms, ALS symptoms, I believe I can get better. I do. I don't think I'm terminal. If I was, wouldn't there be proof? Exactly ;)

This week I see a gastroenterologist, which I've never done before, and then I'm off to an old clinic to have a little checkup with them since they did help me get about 30% last year. I see an internist and a biological dentist next month, and maybe the month after that I'll be a patient at a new health center. My body just has to hold on. Despite getting worse, I have to be patient and hang in there. Even if it's by a fingernail.

Much Worse

I kinda feel bad for whoever reads this. I don't feel like blogging again because things are so dark but maybe it will help me organize my thoughts and symptoms.

Things have taken a hard left turn.

Where do I begin?

I will back pedal a little bit. So some of this stuff is actually in the previous post. So, bear with me.

So, first week of February, I did my LDI, had some brain fog lift, then I guess a flare? Then, I don't even know.

Second week of February, snowstorm after snowstorm caused me SO much pain, but I pushed through.

That same week, the dreaded PMDD from hell hit and I felt like I had some sort of psychotic mental breakdown. Things were so distorted. I even felt like I had postpartum depression at one point even though my son is almost 4. I can usually handle life (barely), but when my hormones are acting like the Tasmanian Devil, I fail at life. This was probably the darkest, worst weekend I've ever had. I could not stop crying.

Third week of Feb I decided to attempt minor yard work (AKA picking up dog poop) and something bad happened. I can't even describe it. I exerted myself too much or something with the repetitive bending over and use of leg muscles. I ended up barely being able to make it up the stairs. It wasn't an "accomplished" exhausted feeling one gets after the gym. It was an "my body can't sustain myself" feeling. I got in bed and stayed there for a day and felt myself getting weaker...

Weaker to the point of going to the ER AGAIN!!!

I had some sort of physical breakdown that I thought was maybe an adrenal crash or a thyroid storm. Well, it wasn't. They don't know what it was. I tried getting into an endocrinologist but my labs look normal to her so she won't accept me.

So, I stopped all supplements to see if it would help? Was anything even helping??

Well, now this past week has been the worst one yet.

I have woken up with the scariest feeling I have ever felt in my life. The only way I can describe it is death. I wake up and some sort of hissing, burning, falling, dying episode rushes over me before I can even open my eyes. My body feels dead, hollow, and my heart starts POUNDING. I can only think that this is my cortisol awakening response completely malfunctioning or something. Mixed with vertigo mixed with migraine aura mixed with low blood pressure mixed with blood sugar shooting up faster than my body can handle. I called my doc about it and tried to explain this to her and she was telling me how blood sugar and cortisol go hand in hand. I have been drinking a lot of gatorade and having maple syrup. More sugar than usual I guess? But I told her something separate seems to be going on in my solar plexus. I told her I tried half a Xanax but all it did was make me feel like I was on Benadryl and my body felt the same. I told her how something seems structurally wrong with my stomach. I swear something is cutting off blood supply to my brain or oxygen or something.

I think I must be having silent migraines. I am AFRAID to sleep! When I lay down my heart feels like it's fading and I feel vertigo. Like when I lie down it feels like my stomach is on my heart or an artery or something. That probably sounds stupid but it's the only way I can describe it.

I keep getting hypnic jerks and headaches??? While trying to fall asleep. I feel my body fading away when I try to fall asleep. I have had NO appetite.

Then I'll randomly drive to the store and be FINE??? For like an hour a day I'll be fine. Usually in the afternoon? Maybe that has something to do with blood sugar and cortisol????

I started Pantoprazole which may have side effects of insomnia and silent migraines.

I have never had any of these issues before. I already have enough issues.

So, maybe I am even having B12/Folate deficiency symptoms? My Vitamin D is normal.

I see the gastro doc next week to see if a hiatal hernia could really do this to me. I am going up to get a myers cocktail IV to see if I am deplete in nutrients. I'm trying to up my Iron 'cause that was low.

My heart and lungs and stomach are not normal. I have to find something that is wrong!!!

I feel like I know what Lyme feels like and this doesn't feel like normal Lyme. I know what panic/anxiety feels like too, and this is not it.