Treating Lyme

Up until 2005: I had been on many drugs from many different doctors. Lots of psych meds mostly. Started having reactions to anxiety meds, novacaine with epinephrine in it, allergy meds, pain killers and anything that has a sedating affect. Also starting to have weird reactions to some foods.

2005: Three weeks of Doxy did not work. Brought on symptoms such as twitching, falling, confusion and hallucinatoins.

2006: Found information online about finding "Lyme literate doctors," or otherwise known as LLMDs. My first protocal was 23 pills a day, including three antibiotics, and twenty supplements. Also during this time I started doing the salt/vit c protocal which my Lyme doctor told me about. Took some breaks every couple months to add in Chlorestamine to help detox or bind toxins.

2007-2011: Bought my first rife machine. Would use three different ones over the next course of five years, including a Doug Coil

Using a Doug Coil

Byron White Drops: Loved A-Babs, didn't do so well on A Bart.

Cowden Protocal: only for a few months due to reactions being too severe. But some drops were helpful I believe like Samento.

Throught this time I did so many antibiotics I can't even remember them all. I did lots of supplements and herbs and detoxing protocals. I never did a picc line, it was never offered. I did go to a couple different Lyme literate doctors and naturopaths and a chiropractor that was trained through ILADS.

And this is when I met my second husband. I met him at work where I deejayed. I told him right off the bat I was sick. He said he already knew and had heart through the grapevine. He was way younger then me but he was also sick, I believe possibly Lyme but who knows. He would help me mow the grass and looking back I believe we were both there for each other at a time we needed it. It didn't last long but he is still a good friend and always will be. He helped me at the worst point in my life and I'll never forget that. I know he suffers too and hope that one day he finds his answers too.

Christmas Night 2011: I am actually estimating this date. Since this day I have a hard time with, "time." I

The night I had a mini Stroke

had a mini stroke. Or so they guessed. Christmas night day we all had a great day opening presents. My kids came home from collage and everyone was home sleeping that night. We had played games and had one of my favorite nights that I ever remember. I just remember going to be really late, like 3am. I woke up sometimes later and felt weird. I had anger. I felt mad and coulnd't stop feeling like I was this weird anger feeling I could not explain. I feel back asleep.

I woke up in the morning and felt confused. I saw my kids in varoius areas around the house sleeping. I saw my daughter who was home from college on the couch and I remember staring at her confused to why she was there. I went into the bathroom and I coulnd't feel my right arm. I tried to lift it to open the door and it had no feeling. I thought I had slept on it and it must be asleep. I looked in the mirror and didn't recognize myself. My face looked weird. There was something wrong. I knew from working at a nursing home the signs of a stroke so I started yelling for help to my daugher and husband.

They woke up and called 911. As this happened this is what it felt like inside my body:

I started getting dizzy and felt like I was going into a dark tunnel. My head felt a cold pain, like it felt like cold blood rushed into it and couldn't get out. A big pressure building up. My heart started to hurt and felt like it was squeezing and pumping too fast. I felt a pain connected go through my head down to my neck and to my heart. I couldn't move or respond to anyone. I could hear. I couldn't see anything. I was trapped inside my body. I could hear my kids telling me to breath. If felt like my body was trying to breath but I couldn't control it. I felt like I was dying. I felt the paramedics strap me into a chair.

Once in the ambulance. I could open my eyes. I rememer a police officer that I knew telling me it was going to be ok. I could hear the paramedics asking me questions but when I tried to answer I couldn't. Slowly my vision came back, then my speech then I could lift my arm. By the time I got to the hospital I was completely reponsive. But my right arm felt heavy and I didn't feel "right."

My MRI or catscan, I can't remember which they did came back normal. They said they thought it was a TIA (mini stroke.) The blot clot, if there had been one had cleared on it's own and not shown up on the scan. They put me on bloodthinners and eventually sent me home. My discharge papers read: TIA or neurological Lyme attack.

I have never felt normal since that day.

For five months after this I could barely get out of bed. My kids and husband had to help me to the bathroom. I could not sit or be upright at all. I would go days without a shower. I could only eat if someone brought me something. My kids were at school and my husband was also taking care of two other elderly friends, after work, one with cancer. (RIP Don <3)

I laid there for five months wishing I would die. We were broke and didn't have tv. I couldn't get up to go outside because I had a terrible pain that went from my neck to my heart everytime I was upright. I just really wanted it to end. I could not take living in a useless body anymore.

Where were the doctors?
This part was really hard on me. I had been labeled as someone with panic disorder and doctors never took

I stayed in bed for months without being able to sit upright.

me seriously anymore. I went to several drs and not one ordered any scans, or tests or anything to try to find out why I had that pain in my chest and neck. One doctor finally ordered physical therapy. It was nearly impossible to get there since my husband worked, my kids were in school or off at college, and I could no longer drive. I went to a couple sessions where I actually learned a lot. It turned out my therapist had Lyme but had recovered thanks to early treatment. But she understood the pain and fatigue from it.

Everytime I would go to the sessions I would break out in sweats and have near fainting spells. One time I walked into the office and I was trying to fill out paper work for them and all of a sudden I felt like I couldn't move. I felt that cold feeling where you know fainting is inevitable. I dropped all the papers and the board on the flloor and sat into a chair quickly. At first noone did a thing, I was sitting there feeling myself slip away slowly and then I heard someone say, "Do you need help?"

I woke up in the urgent care on the opposite side of the building. I was in a wheel chair sitting in the waiting

room. I wasn't even in a private room yet in the back of the ER, just sitting propped up in a wheel chair unconscious. A nurse came out and wheeled me back and an angry dr said, we paged your husband (who had been at a seperate appointment for himself upstairs in the building) and told him he needed to take you home.

My husband came and took me home. They did not examine me, they did not ask me any questions. I know this sounds to unbelievable to be real. I'm always scared to tell this story in case people roll their eyes and think I am looking for attention or say, "But it's illegal for them not to treat you."  But this is what happened and I'm tired of covering up the truth out of fear of the doctors that are comitting these atrocioius acts against patients.

After this my physcial therapist put in an order for "at home treatment." I was so elated. I had no idea a PT could just come to your house and help you get stronger right at home! This was a Godsend! Or so I thought. My family doctor, who had origingally ordered this therapy declined to sign a paper saying I should do this at home, so insurance would not pay without her signature. The dr simply said, "She is able to go to therapy outside the home."

From December to May I laid in bed asking God why? I laid there and stared for many months at my ceiling tiles counting them over and over again. I laid there and tried to will my soul from my body. I wanted to die. I loved my family, I loved my pets, I loved life. But not like this. Like this I wanted to die. I couldn't do something drastic that my kids would walk in and find so I decided to just do it quietly. I stopped eating. If someone would bring me something I would eat it. But I would not make any efforts to let anyone know I could not get up all day to eat. I just laid there and wished for my time to come to leave this painful body.

An Epiphany
I don't know if that is the right word really. But what happened is one night I was dreaming. I dreamt that my soul left my body and was floating to the ceiling next to the light in my daugher's room. I was so happy! I was like, I did it!! I died! But then I woke up. I was still here. Ugh I was so drained and it was not real. It was just as dream.

Then something hit me. I thought to myself, if I am not getting better by relying on the help of doctors. Then I better find another way because obviously God is not ready to take me yet.

Over the years I had collected a bunch of  "spiritual" books that I had meant to read. They were all on the shelf next to my bed and I reached over and grabbed two books. One was Wayne Dyers, "A Spiritual Solution for Every Problem." The other was, Carolyn Myss's, "Anatomy of a Spirit." Then I went on to some Deepak Chopra books and just kept on reading. I learned about meditation and about how the mind affects the body.

I started to make five minutes a day to try to learn how to be upright again. I would sit up in bed and prop myself up against my pillows and headboard. Ugh that pain would come so bad in my neck and heart, it felt like there was a nerve attached from the top of my neck down and around my heart. But I'd just make myself sit there for five minutes. I did this each day until I a week or so later I started to try to stand up by myself when noone was home. My legs had atrophied so bad that once when I tried to walk to my closet to get new pajamas, one of my thigh muscles scrunched into a ball. It was the weirdest thing I had ever seen, it just instantly contracted and stayed for about a half hour.

So I learned to take it slowly and not push myself too much. I would just stand up quickly at the side of my bed then sit back down. Each day I tried to do it longer and longer until finally I made it outside oneday to my yard. I remember bringing my cell phone in case I got stuck or collapsed out there. So I made it into the front yard, about twenty steps out and then just laid down in the grass. Like my meditation books said, feel the grass under your skin, feel the wind blow on your face, watch the leaves blowing, close your eyes and listne to the birds and insects singing their songs. It felt magnificent. If there was any personal achievement that I have worked hard for, that moment was it.

I was suddenly brought back to reality by my cell phone ringing. One of my neighbors had seen me laying outside in the grass and called my husband at work to tell him to check on me and make sure I wasn't dead! LOL but my husband was at work, so he just called to make sure I was ok. And I was. I think I laid there for a half hour that day! Felt so good to be outside, and not because someone was trying to haul me to a neurologist appointment or physical therapy.

I hadn't drove in years..I think three years at this point. One day my son's car was broken down. My husband had to give him rides home from work everyday. One night he was sleeping when it was time to go get my son and I decided to give it a try. Boy my legs were shaking as I tried to press the gas pedal in my husband's truck. I was so nervous but I knew I had to do this, I don't know why, I just knew I had to. As I made it to my son's work and was as bit early so I just stuck in my husband's heavy metal CD and blasted it. I felt a live again. I felt like a worthwhile functioning human being at that moment. I realized how in my "past" life I would of taken something like being able to give my son a ride home from work, for granted. But now it meant everything. It gave true meaning to the phrase, "The little things are the big things."

I began to live my life differently. I began to live in the moment and not in the past. I was able to let go of my old expectations of what life was supposed to be and welcome the new little moments. And believe me when I say, I suffer still between these awesome moments, but when they come I relish them. And I try to make them happen and don't expect them to just magically happen on their own. If I have even a slightly functional moment, I use it to make a special memory. Life is built with these little moments, petting a cat, calling a friend, smiling at a stranger. Life is made of these moments and we can choose to make them happen or to let them slip by.

In the last eleven years since I have been diagnosed I have been on Doxycyclene, Zithromax, Omnicef, Rifampin, Mepron, Amox, Augmentum, Flagyl, Tindamax, Cipro, Levaquin, Ceftriaxone, and a couple others I'm forgetting the names of, Cat's Claw, Cordyceps,  Turmeric, Fish Oil, Vit B12 shots and  drops, A-Babs, A-Bart, Burbur, Banderol, Magnesium, Pinella, Cannabis Oil, B 6, Vit D, Bee Venom Therapy, juice daily,  all kinds of diets, ACT, have used 3 different rife machines, including a Douglas Coil, Salt/Vit C protocol, own a Biomat, done accupuncture, 3 chiropractors including one with a Sigma Tool,  and I'm sure I'm forgetting a lot.