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. :)

Out of The Woods

I feel like I have been hibernating. I tend to do this after Christmas, when the winter is no longer new or magical like Narnia, but a muddy, slushy mess with polluted overcast, freezing temperatures, and dying Christmas trees lying on curbs. Obviously it's ten times worse when you are upping your Lyme treatments and herxing all over the place. I've resorted to a Netflix binge of "How I Met Your Mother". They actually have an episode about how all the characters are going through winter hibernation themselves.  One episode has a shot of Robin who, quite frankly, is a mirror of me sprawled on the couch looking super grungy. Totally me, minus the cheese puffs.

I've read a lot about Lyme symptoms being worse in the winter. It seems some people do better in the warm summer months, and then get worse when it gets cold. I think maybe it might be because Lyme thrives in cold and dies in heat? I've been in my sauna more. I feel like it would help anyone in the winter months, sick or not.

During hibernation, Taylor Swift so graciously debuted her new music video, which happens to be my favorite song. Although she's singing about a romance, all I hear is myself. Asking myself every day as I go through treatment, "Are we out of the woods yet?" I love how she repeats it so much because I repeat it to myself every day. Her music video is clearly symbolic of a relationship she went through, but seriously all my crazy, dramatic, Lymie eyes see is myself going through my fight against Lyme disease. She's freezing, she's burning, she's falling, she's getting up, she's trapped, she's drowning, she falls, she's crawling, struggling, suffering in so many different ways on so many different levels. But she keeps her head up and keeps moving forward despite all the road blocks. And she is ALONE. I must really be getting cabin fever because, to me, the wolves and vines represent spirochetes, too! Oh, the brain of a Lymie. I just see things with different eyes. The video is super beautiful to watch, though, and the scenery in the video seems to help my winter blues. I love the end when she's free of her struggles. I can't wait 'til I am healed and get to (metaphorically) walk out of the woods like a warrior and say, "Are we in the clear yet? GOOD!"

Here's the video. If it doesn't work, here's the link: https://youtu.be/JLf9q36UsBk

P.S. I'm breaking out of my hibernation briefly tomorrow to get my hair done on the eve of my 30th birthday. Why does getting my hair done make me feel better? It's psychological. I don't want to turn 30. I'm not ready yet. I did not even get to finish my twenties. My life was paused at 27, and so much was taken from me. I'll just continue to tell myself I'm still in my twenties since I have no closure. Then, when I feel better, I'll decide to turn 30.

23 and Me

After being treated for several months, I didn't feel like I was reacting or responding to treatments like a normal person did. While I'm still trying to figure that out, I kept hearing about the MTHFR genetic mutation that a lot of us chronically ill people have. It inhibits our ability to absorb nutrients, and compromises our ability to detox. In my case, I have a few mutations that affect my ability to absorb vitamin B12, which is SUCH a critical vitamin. My vitamin B12 blood serum level is 2000, which is WAY high, yet I manifest vitamin B12 deficiency symptoms. Regular doctors don't worry about it at all, but after lots of my own research and speaking with my natural doctors, I've come to the conclusion that my high numbers are due to the fact that Cyanocobalamin (the crappy, fake form of B12) has built up in my blood because my cells lack the ability to use it. Most of us sickies need Methylcobalamin, which is the GOOD kind of B12. I have found that even taking it orally doesn't do much for me, so I resort to getting it directly injected into my tissues. That way it can bypass all the processing paths in my body and get directly to where it's needed. I always feel some sort of relief when I get the shots. A normal person is supposed to get a lot of energy from them, but I feel some sort of calmness instead. Like my cells can relax a little bit because they finally get what they are so deprived of. I only feel the effects for about two days, though. B12 is said to be pretty safe because it's water soluble. So, anything your body doesn't need just gets peed out. Anyway, if you're worried you are not progressing in your treatment like you should, or if you just flat out want to know your heritage, you can order this test from www.23andme.com. When you get your results, you can input them directly into Genetic Genie or Nutra Hack, and that will decipher all the info you need.

Emergency Room AKA Lyme Ignorance Room

Well, as this week progressed, so did SCARY symptoms. I am extremely resilient, I don't think I complain as much as I could or probably should, my symptom tolerance seems to be high, and I seem to be in tune with what's wrong with me. Yesterday was not like that. I still have a hard time explaining how I was feeling other than I felt like I was dying. I started to worry about my organs. My liver, gallbladder, spleen, kidneys, etc, etc. So, I went to the ER and told them as best as I could what I was feeling. Heart flipping around in my chest, breathing issues, shaking, sweating, and pressure. So, they got me back and hooked me up to everything. I literally told myself I am NOT going to say I have Lyme disease because I could pretty much foresee how that would go. Then, Dr. Condescending came in. I have read countless things about doctors telling us Lymies that we are ANXIOUS. That's what this doctor did. I looked at him dead in the eyes, with probably Lyme green hellfire burning in my pupils, and said through clenched teeth, "My symptoms are MAKING me anxious, but anxiety is NOT causing my symptoms". He asked me question after question after question and finally got it out of me that I have Lyme. He literally said with a smile, "Lyme disease. Who diagnosed you with that? Where'd you get that? South America?" I have never been so infuriated in my whole life. I tried so hard to be respectful but I am pretty sure I was not. I danced around the topic as best I could, and tried to just tell him I want my organs scanned to make sure they're okay. He rolled his eyes and said, "Well, if it makes you feel better". When he left the room, I started shaking out of rage. My husband was even mad, and he is generally an easy going guy. So, the doctor came back in, did an ultrasound on all my organs, and told me they were all perfect. He said he'd send me home with a halter monitor or whatever they're called, but I declined and started unhooking myself. Was I glad to know my heart and spleen weren't inflamed from Lyme? Yeah. However, I know that can happen with Lyme and people die from it! They have surgery for it. I wanted to make sure that was not happening. So, we went back home, and I got on the internet and researched Babesia flare. That is what is happening to me. It's been so long that I've had one that felt life threatening, and I guess I forgot what it felt like. Why am I flaring? We are having monster snow storms here, there is a full moon, it's that time of the month, I've been lax on detox, there has been lots of extra activity and stress in my life lately, and to be honest I thought I was winning this fight here for a minute. This is SO rough! I wake up shaking and sweating with a rapid heart beat before my body even has a chance to go through the last normal sleep cycle. I have AIR HUNGER like you wouldn't believe. If it weren't for watching my heart on the EKG, and seeing my oxygen levels, I would think I was suffocating to death. I have enough oxygen, but it feels like when I used to wrestle with my brothers in pillows when we were little and I would have to start screaming for them to let me up. But I'm just sitting here with burning lungs, completely calm, with enough oxygen, but with the feeling of actual suffocation. My heart beat feels like it's in my stomach, then my throat, then skips some beats, then beats to hard, then flips, then I don't even know. My Postural Orthostatic Tachycardia is back. I walk up the stairs and don't even know why I walked up the stairs, then walk into a room and don't even know how I got there. I was on hold on the phone earlier this week and forgot I was on hold like 5 seconds in. I'm also having weakness that I can't describe. Like my body is empty. Like my spirit is trying to escape. Like floating or something. There are not even words to describe Lyme symptoms. New words need to be invented.

I took my own blood pressure, and I've been monitoring my blood sugar and am in the middle of taking new saliva tests for adrenals and hormones. It's so hard to feel like this over the Christmas season, but I have experienced joy. I have CHOSEN to experience joy in the midst of absolute suffering. It IS possible, and my thoughts are with all my other Lymies having a hard time right now. I'm relapsing, or flaring, or herxing. I don't really know. My legs are burning with seering pain, and a lot of symptoms that left are back with a vengeance.

Also, for the record, I just want to say I admire doctors who work graveyard shifts in the ER over the holidays. They are absolutely incredible human beings who do what I could NEVER do. They are some of the most important people on the planet. My rage was not necessarily or personally directed toward this specific doctor. It was toward the complete and utter LACK of Lyme disease education in the medical community. The complete disregard is just so sickening I can't stand it. The crappy tests and the lack of technology. It's not the doctor's fault. It's not. I'm actually not even sure whose fault it is, but placing blame would accomplish nothing anyway. It's just the strangest most helpless feeling in the world to feel as sick as you do, and have zero help in seemingly emergent situations. My sweet family doctor tried to help with blood tests a couple days ago, but of course, nothing came up. All my test came out "normal". I am a VERY sick person, but at least I'm a "healthy" sick person?

Sensory Overload

A year ago, I hoped I would be well enough to go to a movie theater and see the new Star Wars movie with my husband. As the release date got closer, I realized that I would not be better in time. However, I decided I was going to go anyway. So, I took an anti-nausea pill, drank a lot of magnesium, put on my sunglasses, put in my earplugs, got under my blanket, and sat in the very back row with my husband. I looked at everyone with popcorn and candy and hoped that nobody would find out I had my gluten free, vegan, non-gmo, paleo, corn, soy, and dairy free snack in my pocket. I looked at everyone with soda and then looked down at my bottled water. I sat by the stairs in case I couldn't handle it, and had to leave. I knew at any moment, I could experience sensory overload. I could start shaking. I could start hyperventilating.

When the movie started, my brain couldn't adjust to the words on the screen for a long time. However, the sunglasses and earplugs helped keep my nervous system calm. I was pleasantly surprised that I was about 60% safe from everything that was going on. How strange it is to basically induce temporary mild blindness and deafness in order to even have a shot at experiencing something so normal to most.

My stomach acted up really bad during the movie, and was pressing on my lungs a lot. I hoped the lady next to me could not hear my constant belching as a result of Lyme completely wreaking havoc on my digestive system. I worried about not being able to put my legs up. They just had to hang off the chair, affecting my blood pressure. I worried about the seat affecting my joints. When the movie was over, my knees were all locked up and I had to hobble down the stairs. My brain had to adjust from the theater screen back to real life, which was a little unsettling.

I used to be someone who loved big crowds, loved loud music, loved crazy movies, etc. I actually still am that person. It's just so weird to be in this altered body with this altered brain that doesn't allow me to be who I really am. Today I watched a football game but had to sit behind the couch most of the time so as not to be totally overloaded. I love football, and actually couldn't even process it last year. The fact that I'm able to this year (barely) does say something.

The fact that I was able to accomplish any of this is a big deal to me. Measly to other normal, healthy people, but big to me. I get glimpses of normalcy here and there. Here's hoping for more of those glimpses more often.

P.S. After almost dying from disease, I decided I don't like ANY movies where people die. Don't worry, I won't say who dies in the movie, I just take it a little more seriously than most people do I guess. Seeing death and suffering, fake or not, I guess flares up some PTS a little.

Never Too Sick To Try

I forced myself out of the house to go experience life this past weekend with my little family. I refuse to withhold making memories with them, no matter how I feel. I very slowly did a lot of activities these past few days and despite horrendous car sickness, seriously low blood pressure, confusion and memory loss, weakness, and horrendous stomach issues, I smiled for the camera. We must never decide that we are too sick to smile, and I will never let myself be too sick to "try" to not be sick. I definitely have windows of wellness. I do. Lyme gives you bad days and okay days. I take advantage of my okay days full force. People don't usually regret the things they've done. They regret the things they haven't done. I don't want to have any regrets as I go through this illness. I just plow forward, even knowing I'm going to pay for it flat on the couch for hours the next day, like I did today. Today has been awful. My stomach, I think, must be swollen or something. I have every symptom of H-Pylori, but my test was negative. So, it's just Lyme bacteria doing exactly what H-Pylori bacteria does. Except maybe worse. I'm getting disautonomia from an irritated vagus nerve I think, which makes me feel like my body is going to shut down, and I must have gastritis. I need to figure out how to calm my stomach down. If it's not calm, I can't get any of my supplements down. And if I can't get any vitamins, minerals, and herbs down, then I'M down. Many horrible symptoms have been returning these past few days. I need to get back on top of this ASAP.