Hospitals From Hell

We got to Concord ER where they rushed me into a trauma room and arranged for me to get an IV from an EMT student. They ordered a head CT and the basics of blood tests and urine tests to make sure I wasn't drugged or prego. Even though you can give emergency room doctors the best reasons why there is no chance of you being on drugs they still have to check as it is standard protocol. Once they decided all my tests were clear and they didn't know what to do with me they fed me terrible cafeteria food and ordered an ambulance to transport me to Boston Children's Hospital since we were 100% sure that Dartmouth did not believe in Chronic forms of Lyme Disease. I don't remember the ambulance ride aside from singing 'Take Me Out To The Ball Game' as we passed Fenway Park in Boston. Once I got there we got settled into a crumby ER room and waited for 7 hours just to talk to one neurologist and fail the neurology test miserably. Then they hospitalized me upstairs and we got settled in for bed at 4:30 AM on Sunday. After a few hours of sleep we heard from a few doctors and got blood drawn but I was already feeling a tad bit better. They took me off all my medications with the theory that 'Not even the best pharmacist can tell if 25 medications are colliding or not, they can only tell if one messes with one, not the entire webbing network of my 26 including over the counter medications and supplements'. They also changed their minds and didn't run the lumbar puncture (lp) or spinal tap, and the MRI they wanted to run. Simply, I had improved a tad bit so it must not be neurological.

On Monday I woke up feeling much better, did some physical therapy and walked down to the Boston Children's Garden, and I spoke with a psychiatrist who labeled me as over bubbly (which for the record is an extreme compliment and he did not even realize it). I did an OT evaluation which determined OT would be helpful but never fell through. I introduced myself to my neighbor/room mate who had a lot of stomach pain that brought her to the hospital and was given the same excuse that her body was over stressed and wired wrong, and there was no actual reason for her pain. That night we were told I'd be going home Tuesday afternoon and my room mate moved rooms so we had a private suite for the last night. I was woken up by a neurologist at 7:30 AM, who decided that since my neurological exam first thing in the morning, before I could even see straight, was perfectly fine I was okay. All I can say is that is the most ridiculous excuse ever. They had a large meeting with my entire team of doctors that all shared and discussed theories of me being over stressed and wired wrong and crazy, thankfully which I was not present for. Then we waited a few hours to be released and 'yessed' them to death so we could get the heck out of this place that believed that I never had Lyme and was treated incorrectly by the only doctors that ever really listened to me.

We got home at 9:30 PM on Tuesday and I crashed into my comfy bed, thankful for no IV in my arm and no people prodding me all night. From here we would just push forward and try to see if maybe the medicine theory could be right, or maybe the stress theory was close to correct. For now we just would wait and see.

Roller Coaster Ride

So to sum up the past few weeks here is the sequence of events:

After the Monday I awoke walking, I had 5 really good days (which I don't remember I must add). The Friday of that week I went to my brother's graduation and spoke with a reporter from the newspaper and shocked everyone with my ability to walk. That night I started to feel really tired, and I splurged on some cake and ice cream, which led to stomach pain. I crashed into bed that night feeling so tired I didn't even want to breathe anymore.

Saturday I woke up and pushed through enjoying my family's company from Georgia. I had not seen my grandfather in years and I was anxious to enjoy the last day of his company feeling well. That afternoon the head shaking and Canadian/German accent started coming back, and plagued me the rest of the evening (I must add yet again, I don't remember any of my visit with my Grandfather now. I guess 'Lyme Brain' is a more serious term than I imagined). So that evening my mom dragged me back and forth to the bathroom and  force fed me Gluten Free tacos, which aren't actually that bad, but I prefer the real stuff.

That set the pace for the next week. I woke up, felt fine, spoke with my usual Yankee American accent. I ate Gluten/Casein free breakfast and sometimes even lunch with my righteous pill meals before the shaking and voice changes came back. The worst part of the week was that I could get through hours of schoolwork with the clarity of the AM, and end my day completely near unconscious.

Physical Therapy witnessed a lot of great improvement. It was amazing how fast my improvement could backslide in just 15 minutes. I visited my GI (stomach) specialist who shared a definitive positive Casein allergy, deciding that I can't even have lactose free milk, only soy or nut products.

Friday, June 17, 2011- A long day led to my boyfriend's graduation (which, let me add for safe measure, I also, sadly, cannot remember). I got home from the graduation and collapsed into bed. I don't even remember  what happened but I'm told I collapsed face down and couldn't even talk clearly. The next morning I was fine until after breakfast. I was back in the wheelchair and barely managed to brush my teeth before collapsing onto my lap unable to even hold my head up and mumbling to everyone. My mom decided finally it was time for a visit to the ER to double check and rule out other serious things that could be causing the neuropathy.
( To be continued in 'Hospitals From Hell')

New Diet

The Doctor prescribed a Gluten/Casein Free diet on top of my Lactose/Caffeine free diet. Gluten is a protein in wheat products (wheat, rye, oats, barley), commonly avoided in Celiac Disease. There is a small selection of Gluten- free made products, treated for the Gluten, such as Pita breads, Organic salsas and dips and ranches, specific chips and breakfast foods, etc. There are also a few foods without gluten that can be consumed with careful attention to the Nutrition label (yeah, remember where that is? That little hope killer on the back of packages....).  Corn chips have no gluten or wheat products, neither do meats, and most dairy products. If you are taking just a gluten free diet than you have still a fairly wide variety of substitutes, etc. Casein is a product for preservation of dairy products. It is in all dairy products, unless they are specially labeled otherwise or labeled for vegan use. Casein is a broader spectrum to avoid then Lactose, and can be labeled as a 'caseinate' or 'milk protein'. Its often avoided with gluten free diets in Lyme or Autism. Lactose is sugar naturally found in milk and dairy products. These products can be treated for the lactose and therefor called 'lactose free' and there are special ice creams and milks and even cheeses for this purpose, but mostly you can drink soy and almond milks as in a casein free diet. Lactose is commonly avoided in lactose intolerance or lactase deficiency, where the body cant break down the sugar. That can usually be taken care with a 'lactose' pill that substitutes the ability to break it down in the intestine track. Caffeine is a preservative and chemical put into most soda and tea products that gives you energy and some flavor. Caffeine along with Casein, and Gluten are very inflammatory foods for the digestive system, and can be feeding the Lyme Disease and giving it fuel to fire. Caffeine is not in most lemonades, orange sodas, caffeine free sodas, or caffeine free teas. Be careful to avoid this disgusting toxin as well as fake sugars in candy and gum (or artificial sweeteners in some bottled drinks and juices) Diets can seriously improve treatment of many diseases, even cancer, and can increase overall health and energy. I hope you appreciate the information! :)

A Miracle For Inspiration

On Monday, June 6, I awoke to a miracle. The clearest mind in a long time led to a discovery, I could control my legs. It wasn't diet, or new medicines, or anything really other than God's grace and the almighty power of prayer that put me on my feet again. One leg still pushes inwards and causes a limp with some knee pain, and after a few days of walking and exercising and shocked witnesses of my amazing improvement, my calves are incredibly sore. My physical therapist and everyone else I've crossed is amazed, and I came across one woman today whom I met in the waiting room at therapy. She got a brain injury while riding a four wheeler and went from EMT to dependent on God's strength to get her by. This 40 year old lady informed me today that if not for me, she wouldn't be working so hard to still complete her physical therapy and improve and progress from her brain injury. This was so awesome to me, a tear filled woman who was struggling day by day, inspired from a unique 16 year old disabled suddenly by Lyme and raised back up by the Lord's hand only. If there is anything that this past month of hell and depression, weakness and trial, suffering and disappointment would be worthwhile for, it would be the inspiration of one kind, lost soul, on her way back up a mountain of deceit, and using me for her motivation. I couldn't ask for more, and if nothing else comes from this past month I have embraced, I will be okay with just that one thought.

New Specialist in Vermont

Friday was the end all, be all. I had been suffering from autism-like symptoms for just days, since the Saturday before. Yet still I was bad enough, pacing in my wheelchair, screaming at the ceiling, talking a million miles per hour, and sometimes not even making sense with my mumbling, to the point of keeping myself up at night, that a doctor in west Vermont was willing to fit me in his busy schedule that week. After hopeful calls to Dr. J in Connecticut, the world's only pediatric Lyme specialist, we got a hold of the doc. himself and he said his practice    was closed to new patients but he recommended the doctor in Vermont who was familiar with Autism and Lyme. He fit us in around lunch time Friday and it was a hectic 3 1/2 hour car ride there. The whole time I chattered and screamed out the window and I don't even remember the trip. Talk about a long car ride, I'm sure both my parents and my boyfriend Tyler were ready to leave me in Vermont. The Doctor saw me throughout the 2 hours in his office and prescribed the step we are going to take before we try IV Rocephin treatment. I was prescribed anti fungals short term, anti inflammatorys for my brain, a medicine in the same family of Rocephin called Onnicef,  along with Zithromax and Plaquenil, even B supplements. I am also on a Gluten Free, Casein free, Caffeine Free, low Sugar diet, see post about New Diet. This should be a fun trip and the hope is to reduce neurological inflammation and increase my energy levels.

Another Month

Overdone, tired, shaken, and stirred, my body has made it another month. I've pushed through to do certain activities, still in the wheelchair with no leg strength, and have just increasingly worsened. Last weekend was the Lyme Conference for our support group, the only in our area, and many doctors and sick and even healthy people came to help and learn together. I made buttons for the support group, rounding up a few helpless souls, whom all regretted the process, to assist me with the tedious task. It was back breaking work, and really wore me out. Even our goal of 500 was not met, we skimmed by to 300 buttons. The conference had a long day, and by the end, I was hauled out of their shaking really bad. Pushing it yet again so hard was what threw me over the edge again. That night I started autism like symptoms, so bad I can barely type this update. My mouth is non stop, and my brain is off the walls. I cant concentrate, and I have a crazy way of communicating now. My voice is weird, almost like an accent, and I am repeating everything multiple times. I would like to go see Dr. Jones like I've been told I should so many times, but his office is full. However he recommended we see a Dr. in Vermont who would consult with him and maybe take my insurance. I already met the Dr. at the conference and listened to him talk. He saw me in the wheelchair, shaking at the end, and insisted he'd be able to rush us in this week. Today I saw the neurologist, a brain Dr. who was not Lyme friendly, and he suggested this is serious and to hospitalize me at a children's center at either Boston or Dartmouth. He's worried that he can't assist me. However, those two hospitals are not very open to the Disease in it's Chronic form so it would be a battle. Right now we are trying magnetic therapy and other physical and occupational therapies to help out, and my mom is making me an appointment with the recommended Lyme Specialist. We shall see what he thinks for treatment.