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?

Hansa Days 3 & 4

Yesterday my doc did a presentation on bug bites during lunch. It should be on YouTube somewhere. It's called "Surviving Summer". It was really good. It was actually beautiful weather yesterday so I spent some time outside enjoying the scenery. I had a moment of breathing well while I was out there but it didn't last long. I got some new tinctures and did the same therapies as the previous day.

Today my doc found things I never even told him about. He found my floating rib, my bulging L5, and told me that the kind of injury I have in my SI joint can actually cause Dysautonomia. There's something going on with my cerebral spinal fluid, too. I don't have CSF insufficiency like I suspected, but that is a good thing! He worked on my sacrotuberois ligament and had me lift my legs. Then he worked on the base of my skull, after which I had VERY strange tingly sensation on my scalp but it went away. I love how he addresses EVERYTHING! He validates so much of my research and explains everything so perfectly. It's been so enlightening to work with him and I'm so glad they have patients see their doctors every day for an hour for two weeks. It's just brilliant.

Today, I did the Bemer therapy, had electrolytes, green juice, lymph massage, oxygen frequency therapy on my sternum, light therapy on my liver and spleen, another Bemer, and far infrared sauna. 

I still have some new focus from brainwave but it kinda comes and goes. My pain was worse today but the weather was bad. I didn't sleep very well or very long either. 

I look forward to tomorrow. 

Hansa Day 2

Today I did the Bemer chair and then met with the doc where he found I have ammonia toxicity. So he made me a tincture for it, closed my Ileocecal valve, pulled down my hiatal hernia, and tested me for H Pylori which came up positive. I've had previous tests for that but I guess it was missed.

After the doc, I did the light therapy, had a 1hr full body massage, did the sauna, did oxygen therapy, and did the Bemer again. Oh, I also stood on a vibrating plate thing which I did NOT like. 

I love the mineral water, green juices, and electrolyte drinks they have around the facility. I love the new people I've met, too.

My husband and son have been with me the past 10 days but they leave tomorrow. My mom will be flying in tomorrow though to stay with me for the rest of the time.

I'm having a hard time breathing today. Not sure if it's the ginger bitters the doc gave me for my stomach or what. I've been having weird episodes, too. I've had moments of being ok and moments that just hit me and I am not ok. It's so black and white. I'm so sick of the episodes and I don't know what they are or what to do about them!

Hopefully something can be done in the next week and a half.

First Official Day at Hansa

Today I came into the Hansa Center, registered, got a gift bag, put my stuff in a cubby, and then had some sort of weird thermal test where they used a thermometer thing on different points on my upper body to see how my body regulates? It's a little hard to explain and I'm not sure how it works. 

After my thermal scan, which I believe is called a "CRT", I was able to meet Dr. Streit, who has been assigned to me for the two weeks I'll be here. I get to meet with him every day for an hour, which I think is just absolutely brilliant. To be honest, I was hoping I would get him as my doctor, and I don't really know why. There was a 25% chance I would get him 'cause there's 4 working doctors in the facility. They really all seem wonderful, but I'm not sure if I knew he was going to be my doctor or what. He's really cool, though. He went over my CRT results, and LISTENED to me. Like, he ACTUALLY listened to me. He was not concerned with his own doctor ego and his own ideas like I've experienced with others. Rather, he was concerned with my explanation of my symptoms. It's been embarrassing and exhausting to explain 115 symptoms everywhere from my teeth to my toes, but he is a "whole body" doctor and understands everything inside and out. He understands how everything is connected, and never once did he think I was weird. I've been called unusual for so long. He welcomes the unusual, which was both a relief and a breath of fresh air.

After talking with the doc, we had a lunch break, and then I came back and started my therapies. The first one......I don't know what it was but I laid in a chair and had an oxygen tube, and some weird things on my clavicles and shoulder blades. The next treatment was.........light therapy? I had headphones on and they had a light on my chest and back. Then I sat in another chair that was called a beamer? I don't know what that was. But then I sat in a REALLY fancy infrared sauna and I know exactly what that is! I was done mid-afternoon and came back to the hotel and took an "almost" nap. 

Below is a picture of what my tests have determined. They seem to be accurate. Dr Streit even picked up on things that I didn't tell him, that I wasn't tested for, and that I didn't put on any paperwork. There were a few things like that which, to me, proves that this kind of alternative medicine is legit. 

There are people from all over the world at this center. I heard several different accents. People from different countries. I feel blessed to be here. I've read of so many people who wish they could come here and I AM here. I'm very fortunate. I am really hopeful and even almost excited to see what I can accomplish here. I'm not usually excited but things seem promising.

Brainwave Complete

So I did all my brainwave sessions. Each were the same it seemed, but I did not handle them all the same. Sometimes I was fine, sometimes I was stuck between sleep and awake, sometimes I would hallucinate, sometimes I would feel claustrophobic, etc. I was almost considering discontinuing the sessions because I was having such a hard time, but I pushed through. On the last day, I prepared to push through my last session, but my tech said I actually did not even need my final session because my brain was balanced! They said they rarely see that happen so fast but I was lucky. So I was able to do my exit interview and was sent on my way. 

Over the weekend I was experiencing EXTREME dizziness, if that's even the right word. I stayed in bed for so long. Way longer than I normally do. It was so horrible and bizarre. Once the weekend passed I seemed to slowly be getting a little better. I think my focus is a little better. I've been meeting a lot of new people and have been able to have conversations without wigging out. It comes and goes.

I think my sleep is ok. I went off my spec of 2mg of Ambien and have not needed it. My dreams are a little too vivid but maybe that will resolve. My tech says the brain will settle over the next few weeks so I'll just have to see if I notice any more positive changes along the way. 

Brainwave Optimization Day 1

I've arrived at the Hansa Center. Today I started Brainwave Optimization and it was like hypnotism of torture. I have to be hooked up to electrodes and have weird tunes, or notes, or chords or whatever you want to call them in my ears to mimic my brainwaves for 1.5hrs twice a day. I'm not sure why I was wigging out and feeling so uncomfortable. I had bizarre symptoms like Ascension and full body aches and my skin felt invisible. Of course, I am unusual, and this is a strange reaction, but I think the fact that my neck and stomach had to hold still for so long played a big part. I'm also still motion sickness from traveling here, and sleep deprived.

Below is a chart that shows my parasympathetic nervous system (on the left) and my sympathetic nervous system (on the right). I'm not sure which lobe this is but clearly I'm stuck in fight or flight. I think I could physically feel my brain refusing to go to the left. It was NOT fun. I felt like a skeleton sitting in an electric chair.

I will try to eat less and drink more and relax tomorrow as I think that may have played a role in how I was reacting. 

On two positive notes, my technician is a gem in every sense of the word, and I got to meet THE Dr Jernigan unexpectedly. My tech must have told him I was NOT doing well and he kindly peeked in. I must say, this human being gives off a STRONG, humble, wise, powerful first impression. I felt I was in the presence of a true healer whose spirit is VERY good. 

I pray tomorrow I will not react so horrifically. I don't want anyone else to feel deterred by my reaction to this because, as usual, I do NOT respond normally to things. This has helped many people.

I was supposed to rest and nap but my body won't let me nap 'cause I feel like I can't breath. My heart and lungs and stomach hate me, and so does the severe Spring weather here.

Waiting Game

Well, I've had five NUCCA treatments. According to new X-RAYS, progress has been made, however, I FELL WORSE! Yet I cannot decide which symptoms are due to the NUCCA and what is due to low iron, full moon, GERD, horrible weather, and my cycle. I can normally suck it up but I had a couple days where I totally lost it. My worst symptom has something to do with my diaphragm. It's like I can't exhale fully. It feels like suffocation, but in reverse. My breathing sounds and looks normal, yet I feel like I don't have oxygen or I'm hyperventilating or something. My face and arms have gone tingly, I have "episodes" that I still can't explain, and the trauma of feeling like I'm suffocating is REALLY taking a toll on me. My worst symptoms seem to come mid morning? I wake up and deal with my crazy nervous system, try to get up and get going, eat, and then I usually crash. Around 11am?

I'm trying to get into my family doc today to check my iron. I have been SO nauseated, which I do attribute to NUCCA and that's normal, but it's making taking iron next to impossible. At first I thought I was having iron overload. It's such a balancing act. You can't have too little and you can't have too less.

So, I'm waiting for that, and am waiting to travel to The Hansa Center. I will be there two weeks from today. I seriously am concerned something horrible will happen on the car ride there. It's so far away! 16 hours from me! I don't want to fly there. I will be flying back, though. It's a whole lot of "middle of nowhere" between Utah and Kansas. I pray they can help me. This will be the fifth clinic I'll have been treated at. I will be blogging as much of my experience there as I possibly can. I will try to blog daily but I can't promise anything.

I'm learning a level of faith and patience that I've never even touched. It feels next to impossible to attain, yet I have no choice.

Whatever we go through in life, no matter how miserably we keep failing, we MUST keep trying. Sometimes I think the whole point of trials is to sometimes JUST keep trying.

At this point I feel like I'm just trying to remain conscious.

Biological Dentist

I really should not have gone to have 3 hours of torturous dental exams after being in the hospital the previous day having a torturous endoscopy. While this is all way to much trauma in 48hrs, the dentist had a cancellation and I wanted to just get it over with.

The drive up was weird. I was a strange kind of dizzy. My mom has to drive me everywhere for my own safety and for the safety of others. I'm usually dizzy in the car, but this was weird. Maybe leftover anesthesia? It was alarming Not sure if I should have had lunch right before my appointment but I did.

I had not been to the dentist in probably 5 years. I AVOID going because I have some sort of strange claustrophobia of the mouth that I cannot explain. However, in my quest to pursue all avenues of health, I figured I had better get my teeth checked. I have read many things regarding full body health and it's relation to the teeth. I also wanted to go to a biological dentist because they acknowledge chronic illness, namely Lyme.

First, I have to say I was assigned the sweetest, calmest, most wonderful dental assistant without whom I would not have survived the complete and utter torture of the exams. Now, I am NOT fluent in dental jargon, so bear with me as I try to describe what happened using simple descriptions.

So, it's all kind of a blur, but I had my teeth "tested" with a freezing Q-tip placed on each tooth to make sure they were alive? My front teeth are by far the most sensitive. They check my blood pressure on my calf to see how I am absorbing calcium. They also checked my blood pressure laying down AND standing up which I LOVED! They took pictures with a camera, did mold tray things to get an imprint which I swear I was gonna suffocate and die from. I coughed and gagged and panicked at one point. It was so embarrassing but we were finally able to get one while the assistant tapped on my temples. It was a strange kind of distraction to keep me from gagging. Then I went and got pictures taken for my posture, stood in the middle of a rotating space-like machine that I am assuming was a cavitation scanner, and had X-rays which was awful. A jagged, uncomfortable device had to be in my mouth for each picture and it felt like a chain link fence was being shoved down my throat. The assistant put salt on my tongue to help me from coughing and choking and it seemed tow work. I had a nutritional scan from a little space egg looking device, and probably other things happened but I can't remember. Probably 'cause I blocked everything out.

So after all the trauma, I finally met the dentist. He asked me what brought him to the office and boy did I have a response. He internalized everything and we seemed to be on the same page. I asked him about my jaw, my subluxation of my atlas, my dizziness, why my tongue is purple and has teeth indentations around it, why my lips are purple, why my stomach lining is destroyed, and why my nervous system is on the fritz. He suggested a liver cleanse. He tested a liver pressure point on my hand and it HURT, which he says means my liver is backed up. He says my lymphatic system is backed up like sewage, and it's affected my lips and tongue. He told me to take betonite clay and apple cider vinegar for my stomach. He pointed a laser through all my teeth and read numbers to the assistant which I didn't understand. He says the need to floss which I admit I do not do. It's too hard with permanent retainers on top AND bottom. I told him I had two wisdom teeth pulled over a decade ago, too. Oh, and he said my adrenals are having a hard time. They work by themselves I guess 'cause I've had them checked, but maybe my atlas is affecting them. My jaw is also weird. It was strange to not understand a lot there. I'm fairly knowledgable in natural medicine and my conditions, but I don't know squat about dental. ESPECIALLY these high tech, top of the line tests.

So, I have to wait TWO MONTHS FOR MY EXAM RESULTS! This dentist is the best of the best, very sought after, and very overbooked. Their office is beautiful, their staff is pristine, and even though I am a WUSS, they took good care of me. I would recommend this place to anybody. I like how they focus on the whole body, and use natural medicine in conjunction with VERY modern technology.

I don't think my results will be pretty, but that's why I went.

So all of this happened yesterday. Today has been awful. My dizziness is worse. My stomach is worse. My sleeping is worse. My "death" feeling episodes are worse. I really wish I could describe them. I feel like it stems from my stomach and/or my spine pressing on something. I still think it's my vagus nerve. I'm hoping that will be looked into further at the Hansa Center.

Until then, hopefully the PTSD will subside from this week.

Endoscopy

So, I have stomach problems. My stomach is rarely happy. I call it Lyme damage or at least damage from the stress of Lyme. So, I scheduled an upper endoscopy with my new GI. This was before I started feeling REALLY awful, though. Finally, the day came and I was SCARED! I did not know for the life of me how the heck my nervous system was going to respond to the stress of the procedure, the anesthesia, the recovery, the soreness, etc. It was scary to go into the surgery part of the hospital, even though I wasn't having surgery. Now, I've had a couple minor surgical procedures before, plus an emergency C-Section and I did fairly well. However, that was all back when my body was normal. When I responded to things normally.

So, I got in my hospital bed in my hospital gown and the nurse came in and checked my vitals, hooked me up to my IV (which was a chore 'cause my veins hate everybody), and explained what was gonna happen. I was just sitting there in denial thinking about NOT signing the consent form. My mom was there with me which I was glad about 'cause she's a nurse and has been by my side through all the horrendous health issues I've had.

So, the orderly came to get me and wheeled me away to the procedure room which looked equipped to remove every organ in my body! I'm glad I wasn't wearing contacts. Something about the blurriness of the room helped a little. My sweet, wonderful GI doc was so personable with me and has a confident, capable, trustworthy, experienced, wise aura about him. I generally do not get this impression from doctors, but I did from him. So, they put a horrible device in my mouth, hooked me up to monitor my vitals, put oxygen tubes in my nose which, to my recollection, I have never had, and put the sedating stuff in my IV which HURT!!!!!!!! It hurt so bad it upset me so much. My heart was already racing and I was shaking and sweating 'cause I was so scared........

And then I woke up in the recovery room from the best nap I've ever had LOL. I was so well rested, so comfortable, so at peace, so refreshed, and so out of it haha. It was a pleasant kind of "out of it", though. I was in a good mood, and, despite coming out of sedation, was apparently asking intelligent questions. The doc said he would just tell my mom 'cause it would go in one ear and out the other with me. He told everything to her and then left. So I guess the IV stuff calmed my nervous system instead of freaking it out.

When I came to a little more, I got a print out of the images from the scope. I would post a picture here but quite frankly it is graphic and I don't want to gross anybody out.

So, I will skip inserting the picture right here.

So the findings of this upper GI endoscopy are:

A one inch Hiatal Hernia (stomach protruding up my lower esophagus)
Gastritis in the lower part of my stomach (inflammation of stomach lining)
Esophagitis in lower part of esophagus (silent reflux maybe?)

Upper esophagus and intestine normal.

I pretty much diagnosed myself with all of this before getting the scope but it's nice to have validation.

I think I wanna go the natural route to heal this mess, but we'll see.

IT'S NEVER JUST LYME!

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.

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. 

Silver, Ozone, Artemisinin, and Herxing

It has been rough month ever since I started silver, ozone, and upped my artemisinin from 2xday to 4.  I use a silver spray by Results RNA and have been getting weekly ozone IVs. I guess I'm herxing because this is how I feel:

-Full body pain is near extreme at moments. I feel like cement has been poured over my bones.

-The joints I have issues with are flaring considerably. My left femur isn't even sitting in my hip socket right (if that's even how that works). My ribs, elbows, knees, etc hate me.

-Appetite is so screwy. I will be nauseated, then have gas, then be starving, then not want anything, then want to eat everything.

-I have had a jumpy heartbeat at moments, more than usual.

-My eyelids are so twitchy and feel numb at times.

-Neck and jaw are so stiff. My neck even makes crackly, crunchy noises. Just from turning it a little. The base of my skull feels....clogged? People need to invent new words to describe Lyme symptoms 'cause the ones we've got don't do justice. They suck.

-I am WEAK. Not the good kind of weak I used to feel after a dance class. It's a body giving out kind of weak. A scary kind of weak. I weakness I didn't choose.

-This RLS or neuropathy or WHATEVER it is I am feeling from the waist down is flaring horribly. I call it acid legs. Like razor burn under my skin. That's another one of my most hated symptoms and one of my first after taking the steroids that flared my dormant Lyme. Lyme is so evil it doesn't even deserve to have a capital L. lyme.

-I am fatigued, yet my cortisol is high. So I'm always "Tired but Wired". This is one of the symptoms I hate the most aside from what can only be described as Vagus Nerve episodes.

-Skull crushing feelings. I don't want to use the word headache because it's not an ache. It's a crush, or stab feeling off and on.

-I will get hyper irritated, then depressed, then lost, etc. I think I am experiencing "floating", which is a Lyme term I think. I feel disconnected. Vacant. Out of it. I have to avoid emotional triggers, happy or sad.

I find my mind jumping around from symptom to symptom wondering wtf is happening and why.  I find my mind, at moments, reverting back to the way it was before I knew I had Lyme. It can drive a person mad focusing on each symptom and wondering what is wrong and trying to guess why that particular symptom is manifesting and how. There's TOO many symptoms. I need to remind myself that I really have been tested for everything else. I need to accept and be grateful for the fact that I know it is all caused by this disease. It's just hard because it's like having blind faith in this condition. Do I really have Lyme? How do I know? People don't believe in it, testing SUCKS, and finding the right treatment is even harder! Every step of this is surreal and quite frankly a total joke. This disease really is like a sick joke. You build up symptoms over time and go crazy, spend thousands of dollars on tests, lose faith in all doctors, FINALLY find out you MIGHT have Lyme, then spend even MORE time and money playing the game of trial and error with treatments. The symptoms, the treatments, the lack of testing, the controversy. It's all TOO MUCH. I see people with a broken leg and think "lucky" to myself. Or I hear people say they JUST have a headache or JUST have the flu. Sickness and injury is so simple. I want simple, "real life" physical ailments. I want to be normal.

As usual, these symptoms I've been experiencing come and go, but they are not "background symptoms" as often lately. Usually, if I am doing okay and distracted enough, my symptoms can become white noise, which I swear must be a survival mechanism against this life robbing disease. I can cope and put on a happy face when needed. However, I have had way too many moments lately where that's not been possible for me. I am treating more heavily and have to remind myself this HAS to be herxing.

I'm trying to detox more, but detoxing wipes me out, too! Often times it will help me feel better, but I kind of feel stuck recently. It doesn't feel like it does anything. My supplements don't feel like they're doing anything. I feel better or worse despite taking them or not I think. Today, I actually didn't take my supplements and will JUST detox today. I really swear I do not detox well. I think I can physically feel the dead Lyme around in my body not detoxing out. I feel a poisoned, fizzy, burning feeling all over my body. I try not to think about it 'cause it makes me want to jump out of my own skin. I keep trying to look at what I'm eating but I really don't think this worsening is from food! It feels like it is, though.

The weather has been gorgeous the past couple days, which usually helps me to feel a little better. I remember feeling better taking a couple months off treatments, too. Well, not BETTER. Just okay. I've only had okay, bad, and horrible moments. Lately it's been bad with some horrible.

It's discouraging to still experience the same symptoms I had two years ago, but I think I have more knowledge this year, and will have more consistency in treatments this year. I want to pursue all avenues and locate all puzzle pieces to beating this. My goal is to get my immune system above this disease. I will always have Lyme and I know that. I had it for 20yrs but never noticed it too badly (or actually even knew) until the past couple years when it "paused" me. I can't wait for the day when I can push "play". If I can just get to that point again, where I'm just in remission, or dormancy, then that will be good. I will probably have flares the rest of my life maybe, and I'm okay with that. I just want my body to be on the winning team. I want my immune system to score more points than the disease I guess. I just need to assemble the right team. It's trial and error assembling players. Ok, I've watched too much football. If the English language had better words to describe Lyme then I wouldn't feel the need to use silly analogies!

ANYWAY. I really do think silver, ozone, and artemisinin are POWERFUL. They have to be the reasons I feel so....cementy. I keep reading about how great these treatments are for Lyme, but it's strange because I want to feel this greatness, but all I feel is worse. When does the greatness come? Where is this greatness?

It seems like when the Lyme dies, it tries to take me with it. Not today, Lyme. Not today.

Food IS Medicine

When I first got sick and started seeking help from the natural medicine world (after western medicine miserably failed me), I was traumatized by the changes I had to make in my diet. I only wanted peanut butter and jelly sandwiches, cereal, cookies, you name it. To already be going through all the pain and sickness and THEN have to add sugar and comfort food withdrawal on top of that was so depressing. I felt claustrophobic in a way. Punished. One thing that was especially hard was having to feel so alienated from society. You don't realize how food-based society is until you can't socially eat. You can't stop at fast food places, and forget about thoroughly enjoying holiday gatherings. It. Was. HARD. It still is hard, and sometimes just flat out embarrassing. But when you have leaky gut, food sensitivities, poor digestion, and are infested with Lyme bugs, "You Are What You Eat" takes on a whole new meaning.

However, as the months went by, I started to adapt. Very slowly I started to accept this new way of eating. VERY slowly. I think it's been 2 years now, and I've FINALLY been able to adapt. I took an IGG food sensitivity panel that made me say goodbye to all dairy, gluten, soy, peanuts, corn, yeast, processed sugar, white potatoes, and basically EVERYTHING that is in EVERYTHING. Acidic foods are a no no, most condiments, etc. However, over time, I have seriously learned that food IS medicine. It is! Every ounce of food that is put here on this earth has an actual, medicinal purpose, granted that it doesn't get tainted, tarnished, and poisoned by us humans who think we know better. 

Fruits & veggies, herbs & spices, nuts & seeds, and all things natural have such a purpose to our bodies. Everything in it's non-GMO, organic form is so good! I've come to look at food in a whole new light. I eat with a purpose. I eat for nutrients. Not socially. Not for convenience. Not to satisfy cravings. Ok, sometimes I have cravings (cue the paleo treats).

Luckily, I have an awesome husband who is into cooking, baking, and nutrition! I'm too sick, clumsy, and confused to work in the kitchen most days, so he is the main reason I have been able to adapt to this new lifestyle. Now, mind you, I am nowhere near a perfect eater. I simply cannot eat EVERYTHING organic. It's just not possible in this day and age. Even if it was, we just can't afford it (don't even get me started on how crap food is cheap and pure food breaks the bank). However, I try to follow an organic, alkaline, paleo diet as best I can. I am a hypocrite sometimes, though. I know chocolate is acidic, peas aren't Paleo, nor are ancient grains, oats and eggs are controversial, etc, but I'm working on it. Yes, some stuff listed below is hypocritical, but I'm getting better. Here's my favorite things to eat right now. They're not perfect, but they get me by in this Lyme life.

The green soup we invented is actually ALL organic: Chicken broth, celery, sweet potatoes, peas, green beans, asparagus, kale, turmeric, garlic, and himalayan sea salt. There's variations where we'll do carrots, onions, spinach, broccoli, and I'm thinking about adding cilantro, oregano, and other Lyme fighting herbs to it, I put it in a food processor so I don't need to depend on my weak stomach to digest more than it has to. We make a massive pot, freeze half of it, and it lasts 2 weeks.

This is my favorite! The recipe is at http://wellnessmama.com/3396/grain-free-pumpkin-pie/

I don't have the recipe for this one but they're Paleo brownies. They literally saved my depressing birthday party where real birthday cake and going out to eat were not options. The ingredients, though, are almond flour, cocoa, baking soda, sea salt, organic eggs, organic extra virgin coconut oil, organic vanilla, organic raw agave, and Enjoy Life chocolate chips which are simply 

                           Evaporated Cane Juice, Chocolate Liquor, and Non-Dairy Cocoa Butter

 These are raw superfood Goji Bars and they are heaven sent! 

                                                                   1 cup rolled or quick oats (gluten free)

1/2 cup almond, chopped

2 Tablespoons vegetarian protein powder

1/4 cup ground flax seed

1/4 cup extra virgin coconut oil (melted)

2/3 cup almond butter

1/3 cup raw agave nectar

1/8 teaspoon himalayan sea salt 

1/2 cup goji berries

1/4 cup cacao nibs

2 TBS Chia seeds

Mix dry ingredients with wet ingredients, spread in a pan, and refrigerate. Add quinoa if you like.

(this is a variation of a recipe we found online, but I can't find the original)

 If you absolutely must have ice cream, which I wanted on my birthday, this is probably the second most acceptable thing aside from pureeing bananas and freezing them.

I feel like I owe a lot of my happiness to www.bouldercookie.com. It's a cookie, but it's not! 

These are the shakes I have. I do Mediclear every morning and Greens First in the evening. Mediclear is a protein powder with vitamins and minerals, and Greens First is an alkaline, superfood mix of many dried/powdered fruits, veggies, and probiotics. I need shakes to dump my supplement capsules in, and these help. They're easy on my digestion, and taste pretty good, too.

I also have to give a shoutout to these little cheats. They do have cane sugar, so not the best, but they are dairy, corn, gluten, soy free, non-gmo and all kinds of wonderfulness. They're made from ancient grains, and I have them with unsweetened coconut milk. They come in chocolate and strawberry, too. 

Anyway, like I said, far from perfection but these are a good start on the road to nutritional perfection. Or at least an attempt at nutritional perfection. :)