Update

It's been a while since I've posted. I'm not sure why, life has been busy since being home, getting used to my new life of having to not push myself too hard each day, and dealing with the repercussions of when I push myself too hard (which happens all too often). But still try to keep up on house chores when I am able to. My son started Preschool last week, so now I am a school mom (feels so weird! I don't feel old enough!), taking and picking him up two days a week.

As for the Lyme front, by the beginning of August I was showing signs that yeast was back in my gut full force, even though I'm on two anti-fungals (Nystatin and Diflucan). So I made an appt with my doc and he decided my body has become somewhat immune to these meds and we went to bigger guns and started a round of Ampotericin-B (known to be used only as IV for patients who are septic and can be very toxic to organs such as liver and kidneys, but this is compounded into oral form so it's only absorbed in the gut). I didn't notice any die off reactions in August that he had warned me about. Meanwhile I was having more daily headaches, increased migraines, increased daily sweating (I would have to change all my clothes after walking through walmart for groceries, or the library... and forget putting on makeup! there is no point! I would sweat it all off within the hour). I also noticed that when I stepped out of bed in the mornings and through out the day, the bottoms of my feet would hurt (pin prick pain and heel pain)- symptom of Bartonella (co-infection of Lyme that I'm being treated for), along with my anxiety and panic attacks starting to come back (I haven't had problems with my anxiety and haven't had to take anxiety meds in about 4-5 months. So when I had my recent appointment with my doc, he started listening to my list of symptoms, and stopped me. He then said he wanted to ask me a few questions first. He began to ask me questions as if he were reading my list that I had written! He would say "have you had worsening of this...." "well yes, actually I have"... so, come to find out my Bartonella treatment doesn't seem to be working any more. It's coming back! oh Joy! I also have figured out sugar causes me headaches and nerve pain up and down my spine and in my joints. Chocolate also causes me pain. IT TOTALLY SUCKS! I LOVE SUGAR and I LOVE CHOCOLATE! But I have decided I am tired of week long migraines and daily headaches and nerve pain that can only be treated with morphine, so I have cleaned out the cupboard with what is tempting to me, and I am now Gluten free and sugar free (well mostly sugar free... low sugar or sugar substitute- though I have to be careful of certain substitutes because some can add to my headaches). I've read of other lyme patients who have to stay gluten free, sugar free, chocolate free, caffeine free, etc. throughout life, because it can cause symptoms to come back, and relapses to occur. So I fully expect that this may become a complete lifestyle change for me. But if it makes me healthier and helps me feel better, and helps me loose the weight I've gained, then I will try my very best to stick to it. I have fallen off the wagon once, it's hard to stick to this type of diet. It is strict, it takes alot of energy because you have to make alot of things by scratch, and most store bought items that are healthy and gluten free are EXPENSIVE and hard to find in the area I live. Needless to say, our food bill this month was a gouger! ouch! It's going to take some time to build my gluten free reserve of food in our pantry and get used to no sugar. But it also keeps me from wanting to "over eat" or snack when I'm not really hungry because I just have to think about how expensive it is, and I decide, I'm not that hungry, I think I'll go chew some gum instead.

So in summary, I am at a standstill in treatment. My gut is full of yeast, my bartonella is coming back, my lyme treatment has hit a wall. I am up most days and able to care for my son (though I have help from my angel sister a few days a week so I can rest), I do have to take 1-2 naps a day, and I have to really decide what I want to spend my energy on each day... for example do I want to take a shower and do the dishes? or do I want to do laundry and sweep the floors? I can't do it all. And other days I can't do any of it.

So, my doc and I decided to go for the big guns... IV antibiotics. In a few days I will start IV antibiotics in my PICC line. I am scared to death! I'm scared that I will have severe reactions like I did months ago, severe Herxheimer (die off) reactions, I know it means it's killing the bacteria, but it is beyond miserable and I don't want to go through that Hell again.

I also found out a few months ago from a blood test that I have a gene mutation that means my body under-produces Glutathione (the IV med I give myself every 2-3 days). Since my body doesn't produce enough of it on its own naturally, that is most likely the reason why I still need so much of it this far into treatment through IV. It also means I will need to find supplementation for the rest of my life after my picc line is removed. I've also learned that it's probably also the reason why I've also always had problems with endurance when it comes to sports and running, getting sick often and taking longer to recover from illness, etc. It's been very interesting to learn about. It has made me wonder if my son also has the mutation, he gets tired faster than other little kids his age when he's out playing, so I do worry. But with this knowledge, I hope I can help him to not have the same health problems I've had.

As always, this continues to be an eye opening and huge learning experience for our little family.

Lyme Disease Warrior

Oh I forgot to show the sticker that I've had specially made for the back of my car:

"Warrior" makes me feel stronger than something like "survivor", especially since I'm still fighting. I do hope it brings out questions from people around me. I'm wanting and trying to spread awareness slowly.

Lyme in the Spotlight... Homefront news

I've been happy to see some video segments done about Lyme disease on places like Fox News last weekend:

 http://video.foxnews.com/v/2584466440001/living-with-lyme-disease/?playlist_id=930909749001

I enjoyed that it was true facts, just wish it were longer.

As for myself on the homefront, well things are up and down as usual. It is nice to be home with my little family again Some days I'm able be up walking around taking care of Ethan and doing laundry, maybe sweep the floor or do the dishes, either way, I have to remind myself to rest in between each chore. My competetive edge gets me almost every time though and I always try to push myself too much and pay for it later. It's like a never ending lesson in learning how to slow down after living so many years going a million miles an hour. My sister has been here this week, she has been a true angel cleaning, unpacking the last of our boxes, and getting everything organized for us. Ethan is stuck on watching Mythbusters at the kitchen table all day now, which I'm not happy about, I want him to play and move, but as most days are still spent in bed, it's hard for me to keep tabs on him all of the time. He has been able to play with cousins every couple of days and that has been great for him. I'm glad we live close to family.

Last week I had Jordon bring my bike out and told him I wanted to take it for a short ride to see how I handle things. I keep hoping I can slowly work back into strengthening my cardiac, lungs, and leg muscles. He was really worried, but he pumped my tires and held the back of the bike as if I was a child helping me until I got my balance back, I rode down our street slowly and then back. I was very short of breath and knew I should stop, but of course my stubborn side was saying "no, keep going!", but I stopped and said to my husband who was waiting for me "one small step at a time right?" I haven't gotten back on my bike since, but hope to again soon.

Yesterday was a day I felt locked in my body like it was a prison, it just wouldn't move and my brain wasn't working right (brain fog). When that happens, I can't read books, if I watch movies, they have to be ones I've seen before so I don't have to think so hard and focus so hard on them.

Since my picc line, taking showers and baths are harder, I tend to go days without one (I know, ewww), mostly because I'm still too tired and it takes too much effort. I have to suran wrap up my arm and tape it up good and then keep my arm up and out of the way of the water while I wash one handed. I prefer the help of my husband, but by the time he gets home at night, I'm usually spent and have no energy to take a shower.

I've been learning more about Glutathione and what it is, and what it does in the body, especially since it's my medication that literally keeps me going. I also found out recently that I have a gene mutation that in short terms means my body underproduces glutathione on it's own (yes, your body produces glutathione in the liver, it's like the mother of all antioxidants and helps cleanse the liver and other organs of toxins), apparently my body underproduces, which explains why I'm still having to give myself IV glutatihone in my picc line every 2-3 days 7 months into treatment to keep my body stable. I'm on a supplement that is supposed to help the body produce glut, but so far nothing. So the next step will be to "explore genetic testing for other detox abnormalities" as stated by my doc.... still not sure what that means yet, but I will learn more soon. Either way, life is still difficult, there are days when I wonder to my heavenly father "why does life have to be so darn hard?!" and other days when I am able to brush it off and put one foot in front of the other, taking things one very small painful step at a time, reminding myself that life is a journey of learning and of being perfected and polished. I guess I have alot of polishing to be done...

Meet Rebecca Barnett and her fight against Lyme

Meet Rebecca Barnett

I saw this video of Rebecca's fight on my friends blog http://livininthelymelight.blogspot.com/. I watched it and cried because it hit home so hard for me. Her seizures she would have brought back so many memories of my first few weeks of treatment and how I always told people how I felt as if I was having a seizure but conscious, to this day, I truly believe I was having seizures. Especially as I do more and more research and watch other's in their fight against Lyme.
(Its definitely worth taking 6 minutes out of your day to watch.)

Thank you, Becca, for sharing your journey with us. 

"My name is Rebecca and I'm sharing a part of my story with you in hopes that this increases your awareness and may even help you. I guess you could say it all started when I was nine years old. My family decided to go to the park, which was surrounded heavily by woods. That evening my mom noticed a tick on the back of my neck. We got tweezers and removed it. We did not go to the doctor because at the time, we were uneducated about Lyme Disease.

 I don't remember being truly effected until I was eleven. I would get headaches everyday and I would feel sore. We thought it was dehydration, but no matter how much I drank, the headaches continued. The time gaps between my symptoms were very odd but we do believe I got bit more than once. Our theory is that I was bit and the illness remained dormant until I was bit again at a fall retreat when I was thirteen.

My last year of junior high is when it all unraveled. Right after a fall retreat, I showed symptoms such as; jaw pain, fever, headaches, paleness, stiffness, stomach aches, fatigue, joint pain, and a rash on my head. Never once did Lyme disease cross our minds. The Dr.'s made excuses for every symptom. Jaw pain was my braces, the pains and aches were from track, and the fatigue and moods were normal for a growing teenage. I later went to the doctor for the fever and the rash (not a bull's-eye). My Diagnosis? " Sweetie It's viral, and did you change your shampoo?"

Later that same year, my vision started to go and I needed glasses. I also got my wisdom teeth out and it took me about a month to recover instead of the usual week. In school I was very moody and quiet. When I was in the halls I felt as if I was walking in slow motion. Everything seemed to bother me; the people, the color of the rooms, the light... My menstrual cycle also was so painful and irregular, I had to stay home in bed. We saw many specialists and doctors and got no answers. A few weeks after school had ended, I went out for Ice cream with friends. As I ate my ice cream, I had excruciating stomach pains. The whole right side of my body was numb but my left side was not. My mom rushed me to the hospital and they discovered my spleen was slightly enlarged and they tested me for mono. They sent me home telling us it was fluky and nothing was wrong.

Here's where the ironic thing happens. My parents posted on Facebook about our hospital trip. My mom being Facebook friends with my brothers doctor, contacted my parents about the possibility of me having Lyme disease. This doctor treated my brother for early stage Lyme, and she is currently under scrutiny for treating Lyme. I was tested for Lyme disease and was positive. Tests for Lyme are very inaccurate, so we also sent my blood across the country to IGNEX. My blood work for a co-infection called Bartonella was found to be slightly raised and I was clinically diagnosed for Babesiosis as well.

I had the diagnosis, but now what? I was put on oral antibiotics for about 9 months. After no improvement and only getting worse neurologically and physically, we sought out further treatment somewhere else. At this point I was in a wheel chair, I had been to the psych center multiple times, had seizure like episodes almost everyday, and was sleeping all day long. A good day for me was when I could get up to go to the bathroom. Sometimes I didn't even recognize my own family members.

 After getting significantly worse, we called a Lyme Specialist in desperation and were immediately scheduled for an appointment the next day. We drove three hours and the doctor said I was one of the worse cases he had ever seen. He immediately requested a PICC line insertion for IV treatment. Just when I thought I couldn't get any worse, I DID. With Lyme Disease, when bacteria dies off, you feel worse. This is known as a herxheimer reaction or herx for short. Some of my worst symptoms at this point were dramatic weight loss, and not being able to talk, eat, walk, hear, or see. I literally had every symptom of Lyme and the symptoms that came with the co-infections. We thought I was going to die.

For 7 months I was treated with IV. After a few months, I started to notice improvements physically. Being able to walk is something I will never take for granted again. After missing my entire freshman year of high school, I was ready to go back to school. Every day more of my symptoms went away and the better I got. My PICC line was pulled and I continued oral antibiotics for two more months. I missed my sophomore year for about 4 months. I had my gall bladder removed because of gall stones which was a result from the IV treatment. If I had to choose my life over my gall bladder, well, it would obviously be my life. Towards the end of my sophomore year I noticed symptoms returning. I had a small relapse but nothing compared to the previous year. We treated it with a few months of oral antibiotics and I'm currently in remission again. Yay!

 Lyme disease ruined a part of my life I cant get back. We had to move and sell our house and I lost many friends because of my neurological state. My family is not the same and our lives have done a complete 360. Neurologically, I have been greatly impacted due to the Lyme Infection reaching my brain. I now deal with anxiety, depression, and bipolar disorder. Who knew a little tick could have such a big impact? Lyme disease can impact the body so much, it has been known to kill people. 

Writing this story is very difficult. It's hard to think all this had happened to me when I'm feeling so great right now! In fact, I've forgotten most of what happened. This is because I believe my brain was protecting me from the trauma I experienced and also the fact that memory loss is a symptom of Lyme. My family helped me write this because they lived through it with me. In a way I'm glad I got Lyme, it opened my eyes to how precious life is. It really has helped me grow as a person spiritually and emotionally. I wish more people knew of the damaging and dangerous effect it can have on their lives. Thank you for taking the time to read this! "

 

 

---------------- -Becca- ----------------

What does fatigue feel like to someone wiith Lyme Disease?

Meet Lyme Survivor Jennifer Crystal, she has PERFECTLY described how fatigue feels to a "lymie" (lyme disease patient), so I thought I'd pass on her eloquently written words because they fit my life perfectly.

(Article from LymeDisease.Org)

"A few weeks ago, there was a small fire in my apartment building which necessitated three separate evacuations between the hours of 2:00 and 5:00am. Needless to say, it was a long night, and no one got much sleep. The next day I felt buzzy and glazed over, the same feeling I used to get in college when I stayed up too late writing a paper. I was tired, but it was normal tired, not sick tired. It’s a difference Lymies can recognize all too well, but one that’s hard to distinguish when we talk about a general symptom of fatigue.

Fatigue can mean a lot of things. It can mean muscle soreness after a bike ride. It can mean feeling drained after a long day at work. It can mean droopy eyes, the desire to take a nap, the need for an extra cup of coffee. It can even mean the buzzed feeling I experienced after a night of little sleep. All of these descriptions fit into the category of “normal tired.” What makes them normal is the base level of health underlying them. If a person is otherwise healthy, they are able to push through symptoms of normal fatigue because their adrenals are working properly and their bodies are not worn down from fighting infection.

“Sick tired” is another story. The fatigue of tick-borne diseases is not a general malaise that can be fixed with a nap or a cup of coffee. It is a crippling flu-like exhaustion, one that leaves muscles not sore but literally unable to function; one that makes the body feel shackled to the bed; one that makes the effort of lifting one’s head off the pillow seem like a Herculean feat. There were times, at my lowest point of illness, when I literally felt too tired to breathe.

It’s hard for someone who has never been that sick to understand what a person with chronic tick-borne illness means when she says, “I’m so tired.” I’ve had well-meaning friends say, “I’m tired a lot too,” but in the next sentence they tell me that they’re going to the gym or planning a party. This means they are “normal tired,” and while I sympathize with that, I wish there were more specific nomenclature to distinguish between our two very different definitions of fatigue.

This lack of distinction is especially unfair to patients with chronic fatigue syndrome, a nebulous umbrella under which many Lymies fall. “Fatigue” is hardly a strong enough word to cover what it feels like when your adrenals are shot, your nervous system has gone haywire and your body refuses to function. Even as a writer, it’s hard to articulate exactly what I mean when I use the word exhausted. My best effort at putting “sick tired”—specifically, the sick tired of chronic tick-borne disease—in layman’s terms is, Imagine you’ve partied all night and wake up with the worst hangover you’ve ever had. Your head is pounding. You’re overly sensitive to light and sound. You stumble to the bathroom and barely make it back to bed. Whatever you originally had planned for the day—work, homework, a run—is out of the question. You’re not sure if you’ll even be able to manage basic tasks like bathing and eating. You roll over and go back to sleep. Then imagine you wake up the next morning with all of the hangover symptoms still there, but now, you also have the flu. Not just a mild case of the flu, but a full-on bout of intense fatigue coupled with aches, fever and chills. Imagine this feeling goes on for days, and then weeks, and then months, sometimes even years. That’s Lyme disease.

It took years of medication, alternative therapies and hard work for me to get out of the rut of “sick tired” and battle my tick-borne diseases into remission. However, I still have to be very careful about pacing myself, or my “normal tired” can quickly slip into “sick tired.” The day after the fire alarms in my building, I had to cancel everything on my schedule and just sleep. Some may say it was a luxury that I was able to do this, but I see this one day “off” as a preventative investment against the weeks or months of them that can come back if I’m not careful.

By the same rationale, I take a nap every afternoon, without exception. If I don’t, I hit a physical, mental and emotional wall, melting down like a small child. Pushing through naptime causes me to go into a state that I call “pulling”—a feeling of having to pull myself through the rest of the day, and perhaps the following day, until I can get adequate rest. Without it, I am too tired to walk distances that are otherwise easy for me; I can’t think straight and mix up or forget my words; I overanalyze everything and become emotionally off-keel. Napping for me is thus not a luxury, but a necessity. In essence, I heed the alarms of my body, putting out the small fires before the blaze becomes out of control. And that makes nights with real fire alarms manageable."

Lyme survivor Jennifer Crystal is pursuing a Masters in Creative Writing at Emerson College, in Boston. Her website is jennifercrystal.com. Email her at jencrystal5678@gmail.com.

- See more at: http://lymedisease.org/news/touchedbylyme/jen-crystal-fatigue.html#sthash.HD8BEMWj.dpuf

The Unpredictablity of Lyme

Yesterday after only sleeping 3 hours the night before (leg cramps that I get from time to time) I had a burst of energy and decided to do a load of laundry, since we need clean underwear, and a trip to the nearby grocery store. I thought I wasn't doing too much and pacing myself, but waking up this morning in pain tells me otherwise... How frustrating! I really do try to pace myself, but my "pace" right now is slower than a slug, it sure is testing my patience and humility. I hate Lyme! It royally sucks! Just had to vent that... Now I feel better psychologically at least today. We will see how I do physically, looks like pain meds and ice are in my future today.

Deer, family Reunion, and I'm still alive... Sort of

This past weekend after my picc line procedure and dr appt Thursday evening for a dressing change, my family got on the road late and started driving towards our family reunion in Utah. I gave myself a dose of glutathione just before leaving, in hopes that it would help me survive the trip. It sure was nice not having to find a vein and give myself an IV. As annoying and sore as a picc line can be, it's very convenient when needed. 

Within the first few hours of our trip we hit a deer on the freeway going about 70 mph, it hit our right front side of the van. My father inlaw kept driving until a little later when we pulled into a well lit gas station where we found the damage to be worse than expected, and the radiator dead. So we were stuck for the night. We slept a few hours in a motel nearby and then by a miracle we were able to rent an SUV with a trailer hitch (we were hauling a trailer) and were able to continue on our journey. It was a VERY long car ride and I took alot of pain and migraine meds to survive. But grateful to my parents for helping get my son and I (and our things) down to Utah to meet up withy husband and spend the weekend with grandparents, aunts, uncles, and cousins. I admit I put on my "fake" face too much all weekend, and in some ways I see it now as being prideful and selfish, not wanting anyone to see me sick or have to help me. I'm still learning how to accept help, even after all these years of chronic illness, you think I'd learned by now! My husband reminded me that when I am trying to do everything and not let anyone help, that its really hard on him and others in the family who help. Humility is definitely a lifelong lesson for me, right alongside patience. 

So as of now, I am home in my own bed. As soon as I hit my pillow, my body let go and now I feel like I've been hit by a Mack truck, muscles are stiff, joints are burning and sore and I feel like I have a hangover from all the large amounts of big medications I took all weekend to survive. I am on my own this week with my son for the first time in months and My sweet husband has arranged help so I can rest, which I'm extremely grateful for, considering I slept most of today and I know tomorrow and Wednesday will be similar for sure. 

During the reunion my picc line dressing was in the crease of my arm and so irritating, so I asked my sister and mom (both nurses) to change my dressing and reposition it higher on my arm, all while giving my husband a big lesson on how to change sterile dressings, etc. just I'm the 2 days I had my picc dressing into elbow crease, my skin started to break down! 

When I saw that, I felt justified for feeling so sore, bit it was also surprising. My sister did a really nice job and its out of my elbow and already way less irritating, thank you Ran! 

I also have been experimenting with crocheting a cover for my arm. So far, it's either, too big, too short, or the holes are too big... 

I may break down and buy a nice little cover off etsy so I don't have to make it myself. I'm totally into making everything easy right now. Till next time!