NEURO CLINIC AUTONOMIC TESTING

So, yesterday I went to an Autonomic Neurologist and had some testing done. It was like a torture chamber. I was strapped to a tilt table bed thing and had burning searing horrible electrode thingies placed on me to test my sweat. Then I had to basically make myself hyperventilate and almost pass out trying to blow into a thing to test my lungs with a super tight strap around my ribs (I'm now very sore from it). They monitored my vitals the whole time and then stood me up on the table to see what my heart and blood pressure would do. Then I explained all my psycho symptoms to one of the doctors and all he seemed to know anything about were migraines and seizures. Then the main doc came in and told me all my tests were normal except I do have postural tachycardia. Yeah, I already knew that. So now she is referring me to a neuro GI and also wants to do a 48hr heart monitor and a gastro seizure test. She also sent me for some blood work to test my ferritin, TSH, and also tested for autoimmune diseases like EDS, and also tested me for vasculitis.

Today I am trying to do everything I can for my stomach. I think I'm having an esophagitis flare or something. I've taken tea with marshmallow, licorice root, etc, and a capsule that has goldenseal, aloe vera, charcoal, etc in it. I also rubbed doTERRA DigestZen on my tummy and took some anti-histamine capsules. I've been drinking electrolyte water and have been eating super bland foods, too.

I feel some sort of Lyme flare happening. I've also been having trouble sleeping due to severe neurological sensations and pseudo dyspnea. Just keep swimming I guess...

REMISSION AND RELAPSE

As I look back and read my blog I clearly did not talk about or appreciate enough what The West Clinic AND The Hansa Center did for me. West Clinic got me 30% better and Hansa got me another 30% better. I did have a little flare mid summer after Hansa but I ended up getting a little job that September! I was functioning at 60% health! I really was. Leftover stomach, neck and POTS stuff but I could manage life. I think I was getting better so slowly and wasn't understanding my symptoms enough to realize I was making improvement. I honestly believe with everything in me that my Lyme went into remission over Summer and Fall. Clearly I didn't need to write in here for a while because I felt Lyme was behind me. Unfortunately it took RELAPSE for me to realize how much better I was actually doing!

So, I caught some sort of flu bug of death this past November and I FELT my Lyme WAKE UP! I had a good devastating cry and then went to the West Clinic. My blood looked perfectly interestingly enough but I had a couple IVs anyway and everything flared even worse! So I went back to the Hansa Center about 4 weeks ago and stayed for 5 days. Unfortunately it made me feel so much worse and I am KICKING MYSELF! I should have returned 4 months after I left the first time like they told me to. It is completely my fault. The staff and my doctor there are so smart and amazing and gave me such good boost but I did not listen to them about coming back. Well I did, I just ran out of money and didn't understand the importance of it until now. My friends who DID return to Hansa when they were supposed to are doing great on their 3rd and 4th visits now! And I think maybe 'cause I didn't have a bunch of IVs before I went and went so long between visits I just completely screwed myself over. Not that I've heard of anyone else getting IVs before they went, I am just thinking that's what may have worked for me particularly.

So, now that I have experienced the vivid contrast of remission and relapse, my plan is to spend this spring going to The West Clinic and go to The Hansa Center in June. Hopefully this will set me up for another good summer I HOPE!

Oh, and also set me up to be in enough credit card debt to last two lifetimes.

Summer Update

Well, I had a decent month and a half of summer. I really did. I was doing okay. Not good, but okay. I'm fine with only ever being okay, too. It's livable.

The positive effects I got from Hansa have since worn off and I'm not sure I can afford to go back. I finished all my supplements and then I kinda came crashing down again. I don't think necessarily from Lyme Disease, but from all the ailments that I have along with it.

A lot has gone on since I came back from Hansa because I'm still exploring other avenues:

I did a cranial sacral therapy session and it felt like it messed me up so bad I wanted to jump out of my skin. I recovered and had some decent weeks.

End of June brain fog started to return

Lymph nodes started to get hard (did an ionic foot bath and they softened up)

The full moon made me feel like a psychopath

Juiced too much and had horrible detox reaction that threw my body off so bad

Had an MRI of my neck with contrast which was really traumatizing

Brain fog got worse and depression started to set in. Neck also started to seize.

First of July I went to get results from my biological dentist. He said I have TMJ, bowling ball syndrome, my atlas is off, I probably have cavitations 'cause I have low bone density where my wisdom teeth used to be, my adrenals suck since my blood pressure sucks, my liver sucks, etc

My neck seized up for almost a week straight, but I was able to gently swim and do okay

Benign Positional Vertigo returned with a vengeance

I believe I have Roemheld Syndrome which is my hiatal hernia irritating my vagus nerve and making my heart skip beats, which caused adrenaline surges and throws me off BAD. I think my hiatal hernia came from the SI belt I wore when I first hurt my pelvis. I accept death sometimes during these episodes.

Starting to lose strength in limbs, periods make symptoms worse, depression getting worse

Cortisol started dumping again upon waking. I did NOT miss that symptom! It returned.

POTS/Dysautonomia symptoms returned very bad

Finished all my Hansa supplements the first of August and progressively got worse

Had a deep tissue neck massage that caused vertigo for two whole weeks or longer and I started having more stomach issues and some panic over symptoms

Silent migraine symptoms and stumbling around like I'm drunk

Started having freaky sensations while lying down at night that make me cry

Heart rate jumps 50-70 BPM upon standing

Shake and feel so weird when eating and drinking

Ferritin tanked to 7 and Iron saturation tanked to 14

Saw a neurosurgeon about my neck, he said nothing was wrong except minor disc bulges

Possibly experiencing postprandial hypotension

Mid August have come down with a small cold, strange RLS type weakness in limbs

Full moon is upon me now

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So here is the plan going forward

I currently take lots of supplements of my choice and eating perfectly and it's not helping

I need to try being in my infrared sauna more to see if that helps

I am set to see an Internist to explain all of this nonsense who will hopefully send me to an autonomic dysfunction specialist to do tests to see what the heck is up with my POTS

I need to start therapy for bowling ball syndrome/tmj

I want to continue NUCCA but not sure

I'm supposed to see a PT about my TMJ but we'll see

I want to keep doing massage but I NEED TO DETOX 'cause I'm so darn sensitive to it

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I would like to go back to Hansa but I don't think we could until next year due to finances. I know I was doing okay for a month and a half afterword and the brainwave therapy really did get me out of fight or flight but it didn't last and was useless against everything else I have going on.

Checked Out of Hansa

I am home now from the Hansa and had a pretty good few days. The flight home was good and Memorial Day weekend was good. Well, fairly good. I don't usually say that.

On my last day at Hansa, I met with my doc and he gave me a hug! I thanked him for everything and told him I was so glad he was my doctor. He tested for unhealthy genes and other things. I did all my regular therapies, and then had a checkout appointment with the front desk where I went over all my medicine bottles, how long I'll have to take them, and what bottles will need to be shipped. I have 20+ bottles and I love how they came with instructions about how long I need to take each. It seems like a 45-90 day program of remedies. I love that it's not like, "Here, good luck taking these the rest of your life while trying to figure out how to pay for them". It wasn't like that at all.

I'm instructed to return to Hansa sometime this Fall depending on how well I'm doing. It sounds like it will be about $5,000 for 5 days next time. Yes, $1,000 a day. Brutal.

I hugged all my friends I made at Hansa, too, and will try to keep in touch with them. You really bond with the people who are there the same weeks that you are. It was nice to be able to relate to everybody.

I am not doing as well today. Really shaky. I actually didn't take my medicine all weekend. I am starting them today and won't take any more days off until it's time to start taking one day off a week. I'm supposed to continue using my sauna 4x a week. I need 20min of sunlight per day and 20min of exercise. So basically I need to walk outside 20min a day. I definitely did that over the weekend.

I've been sleeping extra deep and noticed (maybe from Brainwave) that I wasn't really as afraid of heights in the mountains like I usually am. I also wasn't as afraid of turbulence during the flight home like I usually am.

So, I'll be spending my summer taking all my 20+ remedies twice a day, detoxing, and getting outside as often as I can. I'm gonna try to eat less, too, because my stomach seems to do better, as well as my breathing, when I eat VERY light.

I have a headache today. I'm shaking and dizzy. I am trying to decide whether or not I should return to NUCCA treatments. My doc also suggested I do cranial sacral therapy twice a month. I need to find someone good and local.

Hansa Days 8 & 9

Here's a picture by the door of the ST8 therapy room. This is the thing where you have an oxygen tube. They're going to give me a paper about it. Sorry for the glare in the photo. I had no idea this is what the ST8 was doing. I'm familiar with ozone and rife, but not the others. 

Here's a photo of me doing the LUX therapy. It's lights with crystal things in them shining on your organs while you listen to sounds. I think I listened to a monk chant today with certain frequencies, but sometimes I'm listening to water and birds. The lights were on my forehead, heart, and stomach today. I despise sitting in these zero gravity chairs. I have no idea why!!! Nobody else feels weird in them! The light makes my heart act up, and the light on my head made my brain feel weird. They are strong whatever they are, and whatever they're doing. I know I should try to understand all of this more, but I really have just been trusting and going with the flow and not worrying. Plus it just seems way to complicated for my little blonde foggy brain. 

Here's a picture of the Bemer therapy. It's a mat on a chair hooked up to a device. Something about frequencies and circulation and we always have to be drinking electrolytes while we sit in it for 8 minutes. Some people can feel the effects of it while they're sitting but others can't.  

These signs are in various places around the building and I LOVE it. What a great rule. 

So, today, I did my Bemer, and then met with Doctor Streit for the second to last time. We brought of the Phrenic Nerve, which may be playing a role in my diaphragm problems. He gave me magnesium, glutathione, adjusted my sacrum, showed me how to do something around my neck with a rolled up towel to help possible nerve issues in my neck, he found extra disruptions in my diaphragm, gave me something to take in the evening for cortisol, and suggested I take collagen to help my tissues. He is such a brilliant, kind, funny man and I have enjoyed working with him so much. 

After doctor visit, I had a massage with Melissa, who seems to massage in a way that aids the lymph system. She pays attention to lymph nodes. It was shorter today and lighter because I am sore from the weather and from the previous day's massage. I swear when she lifts up my neck I can breath easier. Maybe 'cause the phrenic nerve gets some room to move my diaphragm? 

I did ok after treatment but I STILL HAVE EPISODES AND I DON'T KNOW WHAT THEY ARE! I just really think it has something to do with my neck and stomach and the connection (or disruption) between the two. 

Tomorrow is my last day and oh my gosh. I don't even know how to feel. A lot of the patients I talk to don't know how to feel either, as it's the last day for many of them, too. I hope to have some sort of summarization visit tomorrow with my doc. 

We'll see what tomorrow brings. 

Hansa Days 6 & 7

Here's some photos of the sauna they have at the Hansa Center. It's VERY fancy. I think it fits 5 people.

On Monday I was completely miserable, but kept hearing from the Hansa staff that it's very normal for their patients to have a crummy weekend after the first week of treatment. They said they see it all the time. The full moon and huge storm that rolled in were negatively affecting everyone, too. I had been up 'til 2am the previous night with gastritis and shaking. It was brutal. I had some intestinal problems as well, and was very jittery. I did the sauna first thing in the morning which was NOT a good idea. I can only handle the sauna later in the day, and I let the staff know. I didn't do well with the light or oxygen therapies and was beat by the time I made it to see the doctor.

The doctor is always my favorite part of the treatment day. Today we tested me with color therapies. I am drawn more to lavender and green but did not like red, yellow, or blue. He told me which colors represent systems of the body but I forgot. He also tested me with food sensitivities with vials of energy from the foods. A lot of foods came up that I already knew I don't do well with. He mentioned one of the doctors there helped people with their severe peanut allergies.

On Tuesday I had slept a little better, had a hard time waking up, but made it to the Hansa and got to go straight in to see the doc after my Bemer. He talked about how our brains are cross sectioned and we did some physical therapy where I would have to balance and walk with my eyes closed. He teased me a little bit about being a dancer because my knees were very straight with my leg lifts and my toes were very pointed. I actually caught myself standing in ballet first position. He released my right psoas, which was cool that he found that just basically by the frequency coming from it. I knew I had a problem with that area but hadn't said a thing. We also did some vertigo physical therapy by being on the ground in a fetal position and turning my head and looking up. My eyes were doing a weird thing when I was dizzy I guess.

I'm back at the hotel now feeling horrendous. It's weird to have a fairly ok morning and then feel horrendous the rest of the day. I'm exceptionally dizzy and have a headache. I'm exhausted and my eyes burn and I think another storm is coming.

Something I like about the Hansa Center is it smells like coffee and essential oils, it's like a spa, everyone is opening Christian there, and you meet people who are returning who have made progress. It is not typical to make progress your first time there. You basically shouldn't expect that. Things start to come together later after being there. I met person #5 who is doing well.

One thing I HATE is this falling empty feeling I feel in the zero gravity chairs. It seems to have something to do with my stomach or my body falling asleep before my mind? It is SCARY and torturous. I hate it and I don't know what it is or how to make it better. I've felt it in my bed at home before so I can't totally blame the chairs.

Oh, we addressed my high morning cortisol today, too, but I forgot the remedy at the front desk when I left today.

I feel like I need to nap. I feel so miserable. But I don't want to because that's one of the reasons I was up until 2am Monday night.

I need to get off my computer now. The screen is bothering me. I feel exceptionally awful.

Hansa Day 5

Today I did the Bemer chair (I really need to take a pic), had electrolyte drink, did light therapy on liver and spleen again while listening to the sound of a river in headphones, had green juice detox drink, had a 1hr massage with Kathy, and visited with my doc. Today he honed in on 5 emotional and physical traumas I have from childhood, car accidents, c-section trauma, etc. He adjusted the base of my skull and my SI joint, and found I have tolerance/compassion imbalance. He kept picked up energy blocks in my pelvis. It's so interesting to me he keeps coming back to it because it really is where the most trauma is. I told him I went of my contraceptive the very week I got hurt, and he wants me to get a pack out here from my regular doctor so he can look at it. He thinks that might be a big puzzle piece. I do too. I almost forgot about it until he brought it up. I told him I'm STILL having trouble breathing and he said something about 5 square breathing where you hold it, let it out, hold it, let it out. I need to write down exactly what he said.

So then, he got this toy dolly out and had me grab her hand, which had a little metal circle on it. So, I did and then grabbed the doctors hand and she started singing. Then I let go of the doctors hand and she stopped singing. It was like she was running off our energy?? I have no idea. Anyway, this led to the bug zapper electrocuter thing, which had to go on my toes, my c-section scar, and my head. It was unpleasant but the doc said I did REALLY well. I guess 'cause I wasn't screaming or rolling off the table I was laying on.

The doc put KT tape on my floating rib, told me I need to keep my shoulders back to stretch my pectoral muscles, and a couple visits ago he said I have histamine intolerance? I will have to ask him again about that.

I love how he acknowledges and addresses EVERYTHING I say. I'm very comfortable asking him and telling him anything and everything, which is so not what I'm used to with conventional doctors. He has so much knowledge it seems impossible. He made up one more remedy bottle for me so now I am up to ten remedies twice a day, which actually isn't so bad compared to what I've been on before.

After my doctor visit I had my 30min infrared sauna which I always love, and then one last Bemer before I was done for the day.

My body pain is worse and my dreams are way more vivid than usual. I don't do well waking up or falling asleep, but I'm gonna try and enjoy the weekend here in Kansas as much as I can. When in Rome, right?