A New Hope

This Monday, I went to my LLMD for my routine 2 month check up. Me and my mom walked into the office and after seeing him for over a year now we know the receptionist and nurses pretty well. But when we walked in there was a new girl sitting at the desk, and new nurses running around everywhere. We didn't like how we were feeling about all the new changes.

Then once we got back into the office, a guy came in telling us he was the new office manager. He told me to tell him everything that was wrong, or new, and He'd write it down and the my Dr would come in. I didn't like talking to this guy, I wanted to talk to my Dr, and tell him that I was having arthritis in my hands. But I reluctantly told him everything. Then he proceeded to tell me about what the Dr's next step would be with me. He started talking about some shots that help organize my immune system and at this point I've sort of tuned him out.

Finally my Dr comes in, and he starts to describe LDI or Low Dose Immunotherapy. It is basically the same science as Allergy shots, or Low Dose Allergens, if you are familiar with those. From what I understood, and from what my Dr, has told me. LDI is not new, but it is just over a year old to Lyme Disease patients. Dr Ty Vincent has recently started using LDI on patients in Alaska, and even though it has been going on a little over a year he is reporting a 90% success rate! My LLMD, sent a nurse up to Alaska to be trained for 2 weeks in the ways of LDI.

LDI is basically shots spaced over time with a little bit of dead Lyme Disease bacteria in the shot. I think of it like a flu shot. The idea of a flu shot is to  give yourself a little bit of the flu so that your immune system can learn how to fight it off. With the LDI when you have Lyme it helps "organize" your immune system. It treats your body like you have an autoimmune disease and tells your immune system to focus on attacking the Lyme. The idea is to start with a super low dose and get a shot every 2 weeks, and then 7 weeks and then 3 months and by 6 months people are reporting feeling loads better! Loads of people are flying out to Dr Vincent in Alaska to get the LDI shots, and my Dr is one of the first in the main 48 states to have the research and the know how from Dr Vincent. He has been only been doing it for about 2 weeks, so I am about to be a guinea pig in a way, but the odds are pretty much in my favor that I will be much better, much much faster! This is a good article that I found that explains LDI injections a little better than I did. https://www.specialtynaturalmedicine.com/lyme-disease-ldi/

All in all, after leaving the office I felt a renewed sense of hope! I felt excited to start feeling better. I start the injections next week and right now I am off all antibiotics, for the first time in over a year! I am excited and hopeful for this new information and pumped to keep everyone updated on how my shots go! :)

-The Lyme Warrior

PTSD and Depersonalization and Derealization

Usually when I post things they are what has happened in the past. When I am over whatever has been happened to me. Mostly because it's easier to talk about something that has already happened. And also, becuase I'm not good at sharing what is going on in my life right now. But this post is different. This is what is going on right now with me. And it is one of my biggest challenges so far...

Let me rewind to last August. I was waiting for the results of my Western Blot Lyme test to come back. But the Doxycycline I took to see if I had lyme had made me super sick. My doctor had said that if it makes you sick, you have Lyme. Just because I didn't have a paper back from Palo Alto, California stating that I was a positive carrier of the highest vector disease in America, didn't mean that we were pretty sure I had it. I was researching Lyme more and more everyday. 

When I wasn't doing that, I was laying on my bedroom floor, unable to get up form the depression and exhaustion. I was dealing with anxiety more so than ever because my mom was in Switzerland and I had serious attachment issues after coming home. Do deal with all of this, I was cutting. I cut to escape the feeling of complete hopelessness that entrenched me since coming home early. I cut to feel normal. To release the pain and worry I felt inside mind that I couldn't explain and couldn't understand. I released the pain physically because it was easier to deal with, and it numbed the mental and emotional pain... I was in a bad spot.

Now fast forward past the official diagnosis, past dealing with the PTSD that came after all that trauma. Fast forward past the new symptoms that appeared, losing my reading and focusing ability, locking my keys in my car, feeling nauseous all the time, fast forward to now. A year later... My PTSD is back. And it is known as the "Anniversary Reaction."

Anniversary Reactions happen when the brain is trying to process certain memories, but can't because they are stuck in short term memory. While the brain is trying to process the certain memories into long term the memories are being replayed in the brain. The body is experiencing these memories as if they are real and react the way the body did originally. For example there was a woman who was caught in a burning building in New York, but escaped and ran away. And on the anniversary she found herself in that part of town running away, even though there was no fire, and no danger.

One theory about why reactions like this happen is because it is believed that encoded in a memory is information on how to cope with the trauma. These traumatic memories tell the body what they should be afriad of, how to look at something and react, even how to think and feel in a certain situation. So if the memory is being replayed over and over again, the information is being sent repetivley too, thus the body reacts the way it is told. The woman caught in the fire ran away from a non burning building a year later because her traumatic memories were being triggered by the date and sending the information to her body to "run".

Right now my body and brain are doing the same thing, but with a twist.

An artists depiction of Derealization

It started a couple weeks ago, I noticed people would sound like they were underwater. Super muffled, and I felt disconnected. I didn't know how to explain it, but it felt like my depression was back again. I explained it to my doctor and we switched up some medicine. But things started to get worse, soon I was in what I felt was a "dream-like state" I was watching myself do everything. I was completely detached from myself and society. I was there but I wasn't. I was watching myself do everything. I felt like I was going insane! I was so scared. But still I didn't know how to explain it. There really aren't words to describe how detached I felt, and still feel.

At the beginning of August I never once felt like I was one with myself. I was stuck in my "dream" and I had stopped sleeping, and if I was asleep, I was still watching myself sleep, it was maddening! That was when the thoughts came back... And they were so strong, they weren't fleeting, or subtle, it was as if my detached body was telling me (floating above it), to cut myself so I could feel level headed again. And I started to do it again. I only felt attached to myself, and also to the world if I was in pain. So I picked up the razors again...

It's important to note that at this time my parents were both in New York, like my mom was gone a year prior to Switzerland... I eventually broke down (see my last post about my good friend "LEO") and called my doctor, I explained how I was feeling, they immediately went to action, and I am once again showering without a razor, I am doing all the old things I was doing last time I was in this state of mind.

Then this week, I went to my therapist. I explained to him everything. I told him my frustrations with feeling like I have back slid and I'm not actually getting better. I told him that I was cutting again. That I felt disconnected still, detached. And in a dream. I tried to find the words to describe it, like I am now, but I couldn't then, and I can't now... That is when my therapist said it was probably an Anniversary Reaction, of PTSD... As he explained what it was (like I have done above), all the pieces came together:

My mind is dwelling a lot more on the fact that it was my diagnosis anniversary. I am thinking about it more, and my body is reacting how it had when the events were actually cutting. However, I asked my therapist about my detachment and "dream-like state", because that is new. He said it is probably other parts of my brain trying to get as far from the traumatic memories of hurting and cutting myself as they could. The Irony of it all, I realize now, is that because I am experiencing the detachment it is causing me to cut, which the detachment is trying to avoid in the first place. It's a vicious circle.

My therapist also explained that there is a word to describe my "dream-like" state. When I feel separate from my body it is called Derealization. And when I am separate from others or society it is called Depersonalization. They are real disorders, but can also come from PTSD.

I now am in the process of what is called "Grounding." For some reason it is really hard to do! I have all these techniques that I use to try and keep my mind in my body and my body and mind in the now with others. I practice a lot of breathing techniques, those are easy. But the hard part is when I feel way separate, whether it's Derealization or Depersonalization, I have to find 3 different sights, and notice the details. Then 3 different sounds, then tastes, then smell, then touch... If I am not "grounded" I have to repeat with 3 different kinds of the 5 senses. The idea is to get my brain to recognize reality and focus more on the now and staying in my current state. It might sound easy, but it's not if you are floating around way above your head.

Beginning next week I will go through some therapy called EMDR. It is super hard to explain but it is the process of helping the brain process the traumatic memories stuck in short term, and helping them move to long term... If you want to know more about EMDR CLICK HERE.

When I found all this out. That I had PTSD again, along with Derealization and Depersonalization, and that it was all because of the Anniversary Reaction, you might think I was more discouraged... But actually I felt more hope! I felt relived! In my mind, before I new everything, I felt like I had back slid, and was getting sick and again and that treatment wasn't working because my thoughts were back to self harm. In reality my brain is working hard to get better, it's trying to process those memories, and at the same time I have all these things going on, but it is a relief to know my body hasn't quit fighting along with treatment. I am grateful for it. It may be slow, but I am definitely still fighting. And grateful to know that there is still hope in fighting this crazy disease as well as PTSD!




-The Lyme Warrior

A random and nonspecific story:

Once upon a time there was a girl named Shadie. Shadie had lemon disease, it was always making her tired and what not, it was pretty miserable. But had started a blog to help raise awareness as well as help other people with lemon disease know that someone out there knew how they felt as well. Shadie's blog was a success. She didn't want to look at it that way, she just saw it as helping others through her own crappy experiences. 

Then one day Shadie couldn't write anymore... not about the real stuff anyways. She was troubled. The bad monkeys had returned... Shadie had bad monkeys and good monkeys just like everyone else. But the bad monkeys were overtaking the good monkeys again, like they had about 9 months ago. The bad monkeys told her to do things that she did not want to do. She was scared! Why would her own monkeys want her to hurt herself?

Shadie was NOT going to give in! Instead she tried to pretend they weren't real... that only made the monkeys yell louder. Then she tried to train the bad monkeys to be good. But she didn't know how. she wasn't an expert monkey trainer! Eventually, she slowly gave into what the monkeys wanted. It was the only way she felt better anyways. Because from the monkeys screaming at her, and Shadie trying to act like everything was peachy, she was losing her connection with people again, just like before...

Shadie started walking around like she was in a dream state. Like she was displaced and was watching herself do everything. She became disconnected again, and not much would bring her back. But giving into the bad monkeys seemed to make things a little bit better. But she knew what she was doing was wrong. And she began to hate herself again for doing it. She was feeling guilty for listing to those bad monkeys.

Shadie had lost the desire to blog and share with others her struggles with lemon disease because she didn't feel like they were real anymore. Shadie felt fake. Which made her hate herself even more. Which made the monkeys start to win. The monkeys would minipulate the self hate Shadie had to try and get her to turn on herself.

So one day, but not any day recently or anything like that, Shadie's friend, (because this is a nonspecific, random story we will call her Leo, and not because she is a Leo or anything like that) Leo read an article Shadie was in the process of writing. Shadie had not been able to edit the article and send it back to publishing in over a month. She was preoccupied with the monkeys. The article was about how Shadie had learned to overcome trials by sharing her experiences with others. Leo read it and told her to publish it. Shadie said she would, but didn't really say when, she was good at being vague now. Then for some reason that Shadie couldn't figure out Leo asked Shadie how she was doing with her monkeys. Leo was one of the few that knew Shadie struggled with bad monkeys, but Leo didn't know how bad it was. But still even those that had some idea never asked. Nobody ever thought to ask "Hey, how's your monkeys?" Because people don't usually do that.

Shadie didn't want to tell Leo because she felt ashamed about the bad monkeys. But Leo somehow knew to straight up ask. And Shadie couldn't give her a half-crap vague answer. So she told Leo the truth about the monkeys. That they were telling her to do harmful things to herself that she didn't want to do, but that the had given in agin. Leo told her to tell other people that could help her. But Shadie didn't know how and was scared. Then Leo pointed out that Shadie was being a hypocrite by writing all this junk on her blog and for newspapers but not even living up to it herself. 

Shadie realized Leo was so freaking right! How could she tell people to stop pretending they were fine and get help, when she was doing the exact opposite! That is when Shadie also realized why she didn't want to blog, and why she was putting off publishing her article! Because deep deep down Shadie knew she wasn't taking her own advice! She knew but the bad monkeys were distracting her and she was using all of her energy to try and pretend that she didn't have any bad monkeys. 

By Leo telling Shadie that she was a hypocrite, it was like a slap in the face. But not the bad kind of slap, the good kind. The kind you see in the movies where someone is freaking out and then someone else slaps the person freaking out and tells them to essentially "get a grip" and then the Leo did for Shadie. And Shadie was so grateful for that. Leo had slapped Shadie in the face, in a good way.

Leo had ignited a spark inside Shadie. Shadie started to act instead of being acted upon by the monkeys, it was a slow process but Shadie slowly started to turn outward. Shadie is still going to try and work on getting the bad monkeys to go away. But it is like she is starting over again.

Only Shadie feels like it's harder the second round, maybe because she is more aware of what the monkeys are saying and telling her to do. She doesn't know exactly. But she is going to try and not be a hypocrite anymore.

This was a random, nonspecific story by:

-The Lyme Warrior

13 charts that describe perfectly what it's like to be depressed

I just posted this on my Facebook last night via BuzzFeed. I think it was put up more for humor than anything. I found it funny because a lot of these were actually super accurate. Scary accurate. Like on my really bad days I should just have a shirt with some of these charts on it!

http://www.buzzfeed.com/annaborges/depression-101-yo?bffb&utm_term=4ldqpgp#4ldqpgp

-The Lyme Warrior

How my fight right now, is like a Basketball game...

I wanna talk about something that I think bothers a lot of Lyme patients... I'm not really sure where to start.

First there is the thought of what am I feeling (I've talked a little bit about this before)? Is this depression that is making me down? Am I just really sad? Is it "that time of the month" again? Or is this Lyme? Am I having a panic attack or is Lyme doing this to me? 

These questions go through my head a lot and it's maddening! I'm constantly wondering what Lyme is or isn't doing to my body because it can cause so many things, if you haven't read my post on symptoms go ahead and see for yourself.

But I recently had something else happen to me. I called in a prescription refill to a pharmacy (one of the 4 I get medications from), and because I take so much I forget about that one. Well, the pharmacy never got the prescription refilled, and I forgot. This perscription is called Donepezel. It is used to treat early on-set Alzhimers and Dementia patients, that are in the beginning stages of losing their memory, or ability to read or having brain fog issues. Or it's used for people like me, who at one point completely lost the ability to read. Who forget and have a constant brain fog! 

I was put on this back in Febuary or so. It took a while but I have slowly gained my reading ability back, the fog is pretty much cleared. I thought it was because I was getting better. But I was off of Donepezel for about 3 weeks when i had that mishap with the pharmacy. My brain fog came back. I couldn't read scriptures in church, the words were just running off the page again! 

I immediately realized I was not on that medicine and quickly figured things out to get back on it.

But I am really bothered now... If my brain fog and inability to read and all those crappy forgetful symptoms came back, was I really getting better? Or was it just the medicine? 

It makes me wonder. Am I even winning with antibiotic treatment? Or is it just the other medications that are suppressing the symptoms that are winning? Is Lyme still rampant in my body? And then I wonder, does this just mean I will have to be on mess the rest of my life?

You see the spiral I go in? If all those symptoms came back, is this even worth it?

It's se troubling thoughts, and I don't want to get down and discourage myself, but I have to be practical. I have to think as logically as my brain will allow me, or I guess as the Lyme in my brain will allow me.

How I feel defending Lyme sometimes

I imagine my fight against Lyme something like a basketball game. Sometimes you are playing defense and sometimes you are playing offense. I am taking Antibiotics for offense against the Lyme, and then I take other medications and supplements to combat the symptoms, like a defense. I quit gluten and sugar, also a defense. When I sweat in a sauna, I picture it like an offense.

So when I started to notice my Alzheimer symptoms coming back after not having some medicine, I picture it like the third quarter of a game. The third quarter can make or break a team. I picture a team, the home team, thinking its got the visitors (Lyme beat), at halftime. They are head, they seem to be managing their offense just fine with their stellar defense. But Lyme comes out after halftime with a huge burst of energy, and it turns out Lyme was holding back a massive offense the whole first half to wear the home team down. I feel sometimes that this is whats going on in my body.

I know a mantra my coach always had through high school was "Defense wins games", and I believe that. I really do. I love defense! But I also know you can't win if you don't put the ball in the hoop, and you can't put the ball in the hoop without some sort of offense, or game plan.

I talked to my Doctor. He has told me that there is really no way to tell if it's really the antibiotics (the offense) that are working or if it's just the other supplements and medications (defense)  suppressing the Lyme. It's not very comforting to hear that. But it is something you have to get used to as a Lyme patient. That even your LLMD doesn't know everything about the awful disease ravaging your body. My doctor said I have to just "trust" that it's the antibiotics.

I want to trust. I do! I want nothing more than to believe this almost one year fight has made a bigger dent in the Lyme then it sometimes feels.

But then I start to try and take myself off some of my symptom fighting meds. I take a sleeping pill at night, I can't go to sleep usually without it, no matter how exhausted I am, I lack certain body chemicals and hormones that allow me to go to sleep at night (thanks Lyme). So a few nights ago, I had stayed up a little too late, I had to still be up early the next day, so to take the sleeping pill would mean I wouldn't be able to wake up the next day when I needed to. So I went to bed without it. I didn't sleep all night. It is maddening to me, who is usually very skilled at falling asleep, anytime anywhere, to lay awake feeling so exhausted, but unable to sleep.


This was a symptom on my mission. Before I was diagnosed. And without the defense, it all came back...

It just goes to show that trust is a must with fighting Lyme. I feel like it is easier to trust more blindly when the trial, or whatever is short term. I think that's why I'm having trouble seeing that right now. Because I've almost been fighting for a year and I still have another year (maybe more), to go. The longer you have to endure something the harder your faith and trust is tried.

I don't want to doubt, but things just seem to be dragging in the wrong direction right now.

One thing is for sure, I don't want to let the visiting team get anymore legs up. That's not how I play basketball, and it's not how I plan on beating this illness.



-The Lyme Warrior

The Summer of Lyme

Well, I haven't updated on how my symptoms have been in a while. So this will be just a short update on how I've been feeling...

My herxing has been very minimal, if at all prevalent. I hardly ever notice them, it worries me sometimes because if your not herxing you are not getting better. However there is this concept that actually sounds super strange, and nobody can fully explain it, but it is the Full Moon. Lyme symptoms worsen on a full moon. It is awful, I am more sick the week of a full moon then ever. It is like I'm herding for a whole week. I am extra tired, I feel like I have the flu, I ache, I have no energy! I am so miserable, I am sharing this because this coming week is the 4th of July and the full moon is July 2nd, this coming Thursday and I am just dreading it. I try not to think too much about it, but it is always just awful. There are several guesses as to why the full moon is so awful, but nobody knows exactly why...

tiredoflyme.com a blog that I referred to a lot in my early days of Lyme has all the info on the full moon and lyme disease theories. It talks about the gravitational pull from the moon and how the bacteria can feel it and makes them go crazy. It also refers to the theory that I find the most interesting an that is the electro magnetic theory. But the one I find the most plausible is that the bacteria just reproduce every 28-30 days along with the full/new moon (because some Lymies actually get worse symptoms on new moons instead of full moons) thus making it worse because your bacteria inside you are going through their own monthly cycle and reproducing faster than rabbits inside of you! I know it totally makes me sound like a werewolf, but instead of turning into a sick-awesome giant dog once a month that howls at the moon, I turn into a very sick girl that cries until the a few days after the full moon is gone.

So that is one thing that has been happening, I have noticed the full moon concept effecting me since about February. Another thing that is frustrating me has more to do with my medication then anything. I have finally been able to take Doxycycline. I took it for two weeks last August before they tested me for Lyme and it was the worst 2 weeks ever. I was constantly dizzy and sick, and it was mostly because Doxycycline is the best antibiotic you can take to kill lyme, it did such a good job that I was herding so bad every room I walked into was spinning and I couldn't even drive. So finally after about 10 months of slowly killing off the bacteria I can now take Doxycycline without being bed ridden. However Doxy, as well as most other antibiotics I take (I'm always on 3 or 4 and they are constantly changing), cause sensitivity to sunlight, and when I have ever been on just one it hasn't been a big deal, but 3 antibiotics causing sunlight sensitivity is making me get fried overtime I go outside.


Now, I'm not one it tan, I am white, I fry, I blister, I peel, and I am right back to white. But I work at a daycare center. We swim every Wednesday with all the kids. We play outside, we go on field trips to parks, and hike. I am outside a lot! I have peeled only on my nose, and a little tiny bit on my shoulders. That is after using child sunscreen SPF 70+. I don't peel on my arms or legs at all, I am a dark tan color. I have never been this dark! I don't know how to handle it. My sister has always been darker than me because she will lay out for a little bit or go boating with friends all the time. But I go outside to mow the lawn or play with the kids at work for a half hour and I am another shade darker!

People comment and say it must be nice to be so tan... I just think, yeah right! Because for me it's painful! Yeah I tan super quick but the sun burn is still there, it is pain full too! I tingle, and my feet have blistered over and over from being sunburned so much! Each of my toes has at least one big blister on it from repeatedly being sunburned. I would go back to being white and fair skinned in an instant than being this tan and sunburned all the time.

I also think I have a heat sensitivity that is worse than most. I love summer, it's my favorite season, July 4th is my favorite holiday, but I feel extra tired, and extra exhausted in the heat. Utah has hit up in the 100's this past week and I am just melting. I am not one to usually complain about the heat but I crash every day after work. I worry that I am more moody, and I find myself getting more depressed because I am so much more worn out. I researched this and I found some other people talking about how Lyme spirochete die in higher temperatures (which makes sense because in winter I was always going to the sauna to sweat, I don't do that now because I feel like I sweat all day and that I can't take anymore heat!), I read how they did tests that how that the ideal temperature is 98 degrees Fahrenheit, and as you get higher the lyme bacteria struggles and around 102-106 degrees the bacteria dies off in droves. So summer is good because I am naturally killing off more spirochete, but I am killing myself by doing it as well. My body is shutting down more quickly because the Lyme is fighting it, and then dying so I am actually herxing in the heat and it is so painful that I am exhausting myself to withstand and survive summer.

I honelsty don't think I have ever really complained about the heat of summer, I might say that it is too hot to go outside and play basketball, but I have never wished for winter to come back in a summer EVER, and now I find myself doing it all the time! I don't like it one bit!

Anyways, I feel like this post was just a little bit of me complaining more than anything, I tried not to make it sound that way, and make it sound more informational than anything else... I am doing much better, but these are just the biggest problems with Lyme that I am dealing with right now.



-The Lyme Warrior

FEAR

I wrote this post a while ago, found it in my drafts, and thought I'd share it!

Sometimes people get scared. And I used to think that people were most dangerous when they were angry, and upset. I used to think that when people got hurt it was usually because someone was angry. But now I think fear is more dangerous. It controls you more. It's not as easy to change fear, as it is to change anger. I don't think anger lasts long in most people, they eventually calm down. But fear can last a really long time. I also think that people are more likely to admit they are angry before they will admit they are scared. Because fear is a weakness. And most people aren't as likely to show weakness and admit that they have it.

I've known a lot about fear over these many months. Being sick does that to you. Being detached from everyone else gives you fear.

There are lots of fears in the world. Fear of tight spaces, fear of dying, fear of spiders just to name a few. I think it's silly that I used to be afraid of clowns, and cockroaches, and flying. Those seem so pointless now that my fears go much deeper than getting on an airplane. And squishing a bug.

I think a lot of people have a fear of not understanding. Whether they realize it's a fear or not is a different story. But people generally fear and avoid things they don't understand. I know all about that fear too. But I got passed it. I'm not sure how, but after I started getting sick and I didn't understand what was going on I felt panicked all the time. I was afraid of what was going to happen next. Afraid of what my next symptom would be. When my next break down would happen. Who I would hurt next... But I eventually came to the point where I can now say "what will come will come". 

Now my fear is bigger than not understanding what is going on. I'm afraid of myself. I'm afraid of letting myself give up on the meds, and give into the disease. I have been talking 16+ pills morning and night with a few in-between during the day for almost a whole year now. And to think that I still have probably another year of this is very frightening.

My fear now is my increasing desire to just want to throw in the towel. To give in. Of course I don't feel that way all the time. I will have good days, but when the bad days come (and come they do), it is so tempting to just give in. Fighting is so exhausting. And I can't remember what it is like to not be tired. To not be worn out. To wake up with a  refreshing sleep. And this obviously isn't ending anytime soon and that is what is frustrating.

I am afraid of the day when I give in and decide to give up. I don't want it to come. But I don't know how much strength I have left.... I know fear is the opposite of faith, but like I said, we all fear.


-The Lyme Warrior