My Visit With Infectious Disease MD

My first appointment to an infectious disease doctor was not enlightening. It was extremely uneventful. Aside from him shaking his head in awe as he stated that I shouldn't have been treated for more than the standard 14 days, seeing as that Lyme is easy to treat and "even cases where the Central Nervous System is involved only require 28 days of treatment". I was pretty disappointed in that statement. He also made sure to tell me that I look great so why am I there? After all if someone looks good they can't POSSIBLY feel terrible, can they? Only 80% of common illnesses present underneath the skin! How dare I look good on a work day while trying to make a living and taking time out of my pay to go sit in his office for two hours just to be told I look good. He then ordered some blood work and agreed that maybe there is a complex array of other things going on in my body keeping me from feeling 'well'. He mentioned IVIG, which really interests me since the last time I was mentioned that was upon seeing a specialist in Vermont while in a wheelchair. He said it is a substitute for some people who can't fight illness with their own immunity and might really help in my case. He ordered some blood work to check on my levels for that, and to retest me for Lyme even though he claims "once it tests positive it always tests positive". I'm sure he will write it off as a false negative when it comes back negative like it always has. Aside from the IVIG treatment possibility, he did not recommend or even hint on anything else that might be going on. Apparently there wasn't too much to be concerned about to him since other doctors are managing my other problems. I'm sure he thinks those other problems are not related to each other at all. I even made sure to specify to him that when we say "Lyme Disease" we are referring to the chronic long standing and difficult to treat co-infections as well, which he couldn't fathom being just a clinical diagnosis. This young doctor was the perfect text book of example of a physician playing by the rules who can't bare to think outside of the box. Not the 'know it all' Dr. House type that I was hoping for. At this point I often feel it would be better even to find something else as the cause for all my problems, instead of my Lyme Diagnosis. It feels as if I will be struggling with these symptoms forever.

2 Months Post Op

Two months after my Open Heart surgery I have hit the wall. I have not gotten any further donations on my fund web page (see 'GoFundMe.com' post), which means my car still declines in condition and I struggle to find ways to keep it rolling. I turned 19 on Saturday which was more of a gloomy day than a celebration as I lost my NH Medicaid insurance and had no health insurance whatsoever (too poor for Obamacare). I tried to enjoy a weekend's worth of activities (see 'Boston Aquarium Trip' Post), which resulted in a return of old symptoms like muscle spasms in my neck and weakness in my legs causing them to give out altogether.

The previous Tuesday, I attended cardiac rehab and was informing the exercise specialist of the situation with my insurance when she suggested a new idea. She thought that if I was going to be working out at a gym on my own, I should first push myself while on their holter monitors to see what my heart does under that sort of pressure and if it cools down at a normal rate. She encouraged me to push myself on the stationary bike and after about eight minutes and a heart rate of 160 she encouraged me to slow down to make sure my heart rate dropped at a normal rate. It dived to a point where my blood pressure could not adjust to the rapid change and I ended up feeling dizzy on the floor. I was picked up off the floor by the director of the program who promised to make some calls and get my financial assistance application pushed to the top of the priority list. After sitting through the nutritional class and drinking a few boxed apple juices, I felt well enough to go get the blood work done that my Lyme specialist ordered a few days earlier. Ten vials were drawn along with a urine test to thoroughly check out my systems before the end of insurance coverage that weekend. I felt good enough to head out to lunch with a friend at Friendlys and then was picked up and driven to my disability determination appointment. The appointment was short and sweet and I had no idea how well or poor it had gone, as the doctor encouraged me that I would be hearing from Social Security eventually. I walked back to the car with my head down, slightly concerned that maybe I did not describe my situation well enough and maybe he had not had a full picture drawn of what my symptoms are when I'm in really rough shape. This of course all was happening before I declined that following weekend to a point where I had trouble walking and holding my head up straight after a weekend of birthday activities. I also had started a new anxiety medicine called Klonopin which was affecting me so severely that two hours after I took it I could not function until around lunch time the next day. This was resolved when I began cutting the dose in half after a few nights. I also just started biotin, for my nails and hair which is a healthy supplement for me since I do not drink regular milk and only can handle almond milk.

My total medication list when completed looks a little something like this:
~Vitamin D-3(for energy)
~Biotin
~CoQ10 (good for the heart)
~Magnesium (I tested deficient, great for the gut and detoxing)
~Probiotics (great even when not on Antibiotics)
~Lopressor (blood pressure and heart rate medicine)
~Aspirin (blood thinner)
~B12 (also good for energy)
~Carafate (stomach coating, helps with ulcers)
~Clonazepam (Klonopin, anti-anxiety and depression aid)
~Orthotricyclene Lo (for ovarian cysts)
~Nystatin (chronic yeast overgrowth)
and in the near future because of my worsened symptoms we will be adding treatment for Bartonella, Babesia, and neurological Lyme in the form of three antibiotics and a tincture:
~A-Bart (added to water to treat Bartonella)
~Rifampin
~Clarithromycin
~Omnicef
I have quite the pill box to put together tonight, and it will get fairly confusing as 2 of those are refrigerated, 2 are dissolving, 2 go in water, a bunch must be taken with food while other away from each other, and one is even four times a day away from all other medicines and food. It will get crazy keeping up with it yet again, and just in time for a busy summer where I want so badly to be normal.

My chest is recovering nicely, with only some muscle soreness and collar bone pain as it pops in and out of place. I do cardiac rehab three times a week and just started working on weighted arm exercises and yoga type stretching. I also still do the stationary bike and walk the treadmill. My improvement is visible and I am doing better than a lot would at this point in their recovery, but I am declining with my Lyme symptoms thanks to the Prednisone which ended this week. It allowed the bug to run wild in my system long enough to need a tough bite back.

GoFundMe.com

After almost seven years of fighting illness, and being in and out of a wheelchair and even out of state for a second opinion, I still had never set up a financial fund. Asking people who were just as sick as myself, or going through an equal hard time financially for money was just never an option. I still can not be comfortable with the idea of a website where people can go to give money to my cause. I would do anything to be just well enough to work for all my own money, to make ends meet with pure determination and strength. I tried multiple times in a row to work a season at Gunstock Ski Resort, and fell in love with the environment there. I wanted nothing more than to make myself independent and gain experience in the work force that would benefit me later as I hit adulthood and searched for a full time position. I found the days I worked extremely taxing, and needed extra help in the work place as well as accommodations to special hours and shorter shifts. I tried to fight through as best as I could, smiling through the overwhelming pain and paying for it later as I lay in bed in tears. Each season ended a month or more early for me, as I reached a point where tendonitis, neurological symptoms, IV treatments, and surgeries pushed me over the edge. I just wanted to be normal, and I fought so hard to work better and faster than any other employee there. I could not however fool my body into believing I was well. This year, as my season at Gunstock wrapped up early and I went in for open heart surgery, I had no choice but to ask for help. I explored all my options with applying for state aid, even calling a local organization to get ideas for what they could do for me. Partners in Health, described in my last post, suggested I create a GoFundMe.com page. GoFundMe is a public website where a cause can be supported monetarily through anonymous (if you choose) donations that go into an account and can be withdrawn and mailed to the recipient in check form. If it wasn't for my medical insurance ending this week, and my needing more than $3,000 worth of work, with no other options left to me, I would never follow through with creating a page to beg for help. However, in certain cases someone has to be humbled to a point to ask for help, and this is what I've done. I have created the account with the same private name as my Lyme-related Facebook account, Elaina LymeTeen. If you find it on your heart to support my Cardiac Rehabilitation, much needed Lyme treatment, and car repair funding, please visit www.GoFundMe.com/ElainaLymeteen

My Body as Pandora's Box, New Cardio Symptoms

One thing I learned really quickly to appreciate about life is that it has never been something that has gotten boring for me. I have always been to a point where everything seems like a plateau that lasts only a short time, then a turn of events either ends me in a free fall toward earth or on a cloud somewhere embracing greatness. My most recent turn of events starting off the 2014 year were nothing fluffy and pretty and cloud like at all. It all started with my new gym routine. I noticed my first day of working out that my heart rate jumped up to 205 and all I was doing was a gentle incline at a walk on the treadmill. That level of bpm is not healthy, but I didn't know any different at first. I continued to return each day with my friend Rose, simply doing some stretches then a walk for about 15 minutes, and occasionally picking up an additional 15 minutes on the stationary bikes. Still my heart rate according the the hand sensors on the equipment was around 200 or more each workout. After a few days of this I began bringing it up in conversation with people I had known for years, the type of people that might as well own the gym because they are there so often and have worked out enough. They kept commenting on how their heart rate at  a full run never exceeds 180 and I should be cautious. I researched the typical target heart rate for someone engaging in cardio strengthening exercise at my age and weight, and all the figures said I should aim for around 170 bpm. How could I control that, if my heart rate skyrocketed at just a walk? After about a week and connecting the dots I called up my Primary Care Physician who scheduled me for an appointment that week, with concern for worse problems. After checking me out in the office and hearing a normal heart at a calm pace of 80 beats per minute, she performed an ekg and decided to refer me to a Cardiologist to double check what could be happening, and ordered a 24 hour halter monitor. Within five days I was receiving a call from my Lyme Specialist's office. The blood work I had drawn every Monday while on IV medications came back abnormal, with liver function levels double the suggested range. Immediately the LLMD stopped all antibiotic treatment for a week, prescribing Milk Thistle for liver cleansing and telling me to keep hydrated. After a week I returned to the lab yesterday to recheck the levels. I'm still waiting for the results to come back about that test while I reschedule work tomorrow so I can make it to my Cardiologist appointment. All of these things add up to a hurting, nauseas, declining, forgetful young girl who still is pushing through for friends, the gym, school, work, volunteer activities, and last but certainly not least, horses. By the end of the week I will have a better idea of what the plan is for my treatment and coping strategies, and hopefully my LLMD will set my mind at ease next Wednesday when I see him.