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.

https://kimmiecakeskickslyme.wordpress.com/2013/09/23/lyme-and-aca-the-herx-rash/


I have this condition called ACA right now on my upper stomach, low back, and around some of my feet after taking a bout of Clindamycin for a sinus infection not too long ago. It was the first bit of antibiotics since I moved to Georgia in January of 2015, and I now know that, due to a myriad of arising symptoms, I am not cured and do need to pursue further treatment. I see an infectious Disease Dr down here for the first time next week, after being demanded to see one by my GYN Dr. who is very sympathetic to all I have been through since I was 8 years old. She believes I have Endometriosis as a result from my Lyme disease, and I will be undergoing exploratory surgery in December to clean that up and get a definitive diagnosis. She also believes that my carpal tunnel, back arthritis, IBS, and much more is involved around the chronic disease since I stopped treatment in December 2014. This is the first time I have discussed this to my Facebook friends in over a year, and also a real wake up call that I am not out of the woods yet. I try to keep updates on my Facebook as I know many people suffering find comfort in reading others' stories.

Where I'm At Now, Zio, Hematologist, 3 months Post Op...

Lot's of people have been asking how Im doing post surgery and with the start of my Lyme treatment again. This post may be rather long but here is where I'm at now.

When I was a child, I used to play with my two older brothers in the woods behind our house. All of the neighborhood boys would gather together with their fake weapons and camouflage clothing to play war. Being the only girl, I always pressured them to let me be the nurse. I had the dream of helping people out in the medical field, and cherished my education about it throughout middle school. I took things seriously, like extra curricular activities and sports, trying to educate myself about exercise and prepare for a long life in school to become a doctor. I never knew that when I turned twelve I had one last summer of joy before my life was overtaken with medical knowledge. I did not become experienced because of my own choice to, though I would be inevitably. I was thrown into the situation of being a chronic illness sufferer and advocate for others around me fighting disability. I look back on that final summer seven years ago and remember the late night bond fires, the first girl that moved into the neighborhood and became my best pal, hiking all over New Hampshire, spending time with friends and creating goals like learning guitar and becoming involved with horses. I was active, fun loving, popular, and a thriving social butterfly. I pushed to be the best and loved reading the last of the Heartland book series. That summer was my first time on social media. My new friend created a Myspace page for me, and I remember sneaking my age to thirteen to be included in the popular crowd. Little did I know the entitling age of 18 would have been such a terrible year for me, and that I'd wish to go back to where I was not a teenager yet. Our entire lives we push to be older and stronger and prettier and more independent. When we finally get there we see that it's nothing special.

Since my last post my life has been a whirlwind. I developed serious recurring symptoms due to the six week steroid treatment I was on. Babesia was running wild in my system. For those of you who don't know, Babesia and Bartonella have been my worst problem alongside Lyme Disease for the past seven years. They are all co-infections, they come together from a tick bite and can be the worst problems in the complicated case of treating Chronic Tick-Borne Infections. My symptoms consist of memory loss, nausea and stomach pain, joint pain and muscle soreness, headaches, dizziness and fatigue, and severe anxiety and depression. My anxiety has progressed to a point where it is worse than it's ever been. I have days where I fall into an anxiety attack and begin shaking and seeing blurry, running to my room or away from people to hide and melting anti anxiety narcotics under my tongue to get the quickest effect. I have become impossible, seeing the world as doomed around me and weeping for hours on end after starting fights with my boyfriend.

I called my specialist this week begging for a change. I told them I could not handle this hell anymore, that I was not eating and suffering from stomach pain and depression like no other, and needed help. They immediately got me an appointment this Wednesday where we can talk about treatment and getting help for my depression/anxiety.

Last week, I received a letter saying my health insurance through the state was ending. I called Medicaid to ask what that was all about, because I had been told I would be covered until the age of 20 with children's medicaid due to the newly passed expanded medicaid law. This was very reassuring, but now I was being told that was incorrect information and I was being dropped off of my insurance in just a week. I do have a financial assistance program that covers all of my main doctors and some testing, but it does not cover my medications and additional doctors, like dental work. This will throw quite the wrench in my plans.

As for post surgery improvement, I am doing my last physical therapy in about two weeks. I have switched from joint and muscle work to exercises and strengthening and will be testing my range of motion and strength at my next visit. My cardiac rehab appointments have increased in difficulty and I have been getting into a good workout routine there. I also have been increasing the weights and trying really hard to get myself to a point where I can get to the gym. It's been difficult getting myself to a point where I have the strength and motivation to get out of bed and drag myself to the gym. This is a constant obstacle for me, trying to maneuver around the Lyme Disease and it's affects when I only feel decent in the evenings and then I need to get to bed so I can sleep long enough. My rib cage and sternum pain have gotten a lot better, as time has gone on. I still cannot do the motion of putting my arms forward as if to hug myself, and I'm hoping that will improve over time.

The rehabilitation center watches my heart as I exercise, and they see a lot of changes in blood pressure with medication adjustments throughout the post op experience. I visited my cardiologist a few weeks ago because of the feeling of fluid on my legs. He prescribed a diuretic which lost some of the fluid weight after taking it for three days in a row. He also was worried about the electrical rhythm of my heart during exercises so he started me on a two week Holter monitor called the Zio patch. It's a two week EKG patch that watches your heart and highlights the moments you press the button (when you feel a symptom). I won't have the results until almost August close to when I return for repeat blood work for the Lupus Anticoagulant disorder.

My hematologist appointment was uneventful and we did not learn much, other than Dr. Walsh is a very understanding physician out of the New Hampshire Oncology and Hematology Payson Cancer Center at Concord Hospital. The experience was very pleasant and the only downside was that she mentioned possibly referring me to Boston to a blood clotting specialist. She said she sees a lot of blood problems and clotting with multiple generations is not her specialty. Now we must wait until the end of August for an answer about that.

Thank you for reading this long post, and I can do a continued post on my experiences with the Health Profession Opportunity Project (HPOP), horse shows, college preparation, health insurance status, and my next treatment plan after Wednesday's appointment.

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.

My Current Condition, 7 Weeks Post Op

After seven weeks I can truly say you wouldn't know from looking at me that I had open heart surgery. I walk straight, stretch often, drive myself to therapy where I get on the stationary bike, and I can do small tasks like vacuum and brush the horse lightly. I do not have the stamina that I will one day have after months of therapy and building myself up to where I was prior to the open heart procedure, but the scar has flattened and still fades giving me hope. Another thing improving is that I have tapered down to my final dose of Prednisone for the next week, and then I will only have two weeks left of the side effects from that medication. It caused major emotional setbacks, weight gain, and worsened Lyme and coinfection symptoms. Of course, it is difficult to tell what is a worsened Lyme symptom with the steroids and no treatment, or what is medication side effects. What I know for sure is I can't even list how many symptoms have swamped me again. The major problems I struggle with now are massive depression and anxiety (enough that even my Lyme specialist changed me from Ativan to Klonipin at my check up appointment yesterday), nausea, joint and muscle pain that can leave me unable to move, muscle spasms, light sensitivity and even blurred vision, extreme short term memory loss, hearing problems, dizziness and fatigue, and concentration loss. I feel a lot of these symptoms like I had struggled with for the last few years when the Lyme and it's coinfections were worsened. My Lyme specialist heard me out and ordered antibiotics for me to take if I end up needing them in June even though my insurance will be ending them. This makes it so that I have them before the insurance runs out, in preparation for the inevitable evil. He also ordered a slue of blood tests to rule out any other problems that we could be missing by blaming everything on Lyme for the past few years. I want to make sure there is not something that is being missed, keeping me from getting better. I feel at the end of my rope, and the stress is affecting my friendships and general outlook on life. I just wish I could curl up in a ball and disappear most of the time. Even when some things look promising, like a generous donation from a loving angel to help repair my car, I still find myself questioning why I am in such a predicament. I struggle with keeping optimistic when everything around me seems to be collapsing. What will I do if something goes wrong with my heart recovery after my insurance is gone? Why has someone like me been stomped on by the system that was made to help people like me? Why does no program have the ability to help me, and when will things start looking up? How come no medicine ever works enough to make me cured, and will I ever be cured? These questions circle my brain day in and out, and I feel as if nobody could understand the emotional pain I'm in. I find myself not wanting to talk to anybody when the end of the day comes, and I just want to hide in my bed. When the sun rises I struggle to want to move from bed to head to rehab, where I will be walking and biking and questioning how I ever enjoyed exercise. I used to feel empowered and strong trying to exercise alongside people at the gym, and encouraged to improve myself. I can't help but struggle with this depression and feel so alone and so beaten. I know I have the best support system in the world, with a man that I love, and my mother's overflowing support. I wish that could erase any negative thoughts or feelings I have, but I find myself feeling empty and distant. I want to be quiet and observant when in a public environment, instead of outgoing and involved like usual. I hope this will pass, and I go into my disability determination appointment tomorrow knowing that he will see into this pain I'm in and understand the severity of my condition.

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

Partners In Health

I wanted to talk a little about the different programs I have found to help out with my situation. One of the most frustrating moments was when my family and I discovered that we had not been told about local organizations that could have been helping us, after almost four years of being sick. There is a state funded program called Partners in Health that is divided up into regions. Their main goal is to help families of chronically ill and disabled youth in any way possible. When we first heard about the program, we were connected to a program director who came to sit down and meet with us and discuss the program. They were able to sign me up for the program based on my chronic diagnosis of Lyme Disease. During the meeting they talked about what I could use for help from the program, and set me up with specific goals for the year. I set goals of getting my situation settled with school, planning a better management plan for my symptoms, and finding ways to keep me active. When I got my concussion skiing and had all my ski clothes cut off of me in the ambulance, the program helped fund me to get a winter jacket. When I needed help paying the school registration for my night classes at Laconia Academy to get my diploma, and the scholarship I had did not come in yet, they fronted the cost until the program could reimburse them. When I fought with the school about a 504 plan, they came to the meeting with us to fight the battle!

Another piece of the program I got involved with was their family council. Designed for parents of the chronically ill, the family council worked to connect the families in the program and put support systems in place for them. They planned and sponsored fun activities, and addressed local problems to help the community out as much as possible. The meetings were once a month and in the middle of the day, so I went in place of my mother. My hope was to become a voice for the children and work my way towards more advocacy, as well as getting volunteer service hours. They almost helped me get a teen support group up and running called 'The Lyme Lounge'. I started it as a Google group where we connected mainly through email, but did not get a high enough response and it ended up faltering.

After a year of not doing too much with the program, I decided I needed some help and called to schedule a visit with the new program leader. She agreed that resetting my goals was a good idea now that all this heart stuff came into play, and came to my house to figure out what they could do for me. This sweet woman sat down with me for more than an hour discussing my situation and throwing ideas out for each need that I had. She mentioned being able to help me apply for state programs through the Department of Health and Human Services (DHHS), and disability. She even mentioned that they might be able to help my car get on the road again. I sent them a quote about the car, which ended up being $3,000 worth of repairs needed including regular maintenance, and she said they could only help with a small portion (possibly $300). She said if I get a second quote on just the necessities, they could try and get another local program to help fund some of the bill for the car repairs. I'm still waiting to hear about this, as I do not have any money to fix the car so I can get to appointments when I start driving again. Another option she gave me was to fund a summer recreational activity for me this summer. On a first come first serve basis they are trying to get children out and moving this summer by paying for a summer camp type activity. She expressed how they would be willing to work with my specific case, but maybe they could do four weeks of horseback riding or something along those lines. This is a cool idea, but I think I might ask them to instead help with a gym membership for the summer as it would be used more. 

There were a few programs I heard about through Partners In Health that I can talk about separately, one being called the YEAH Council. It's similar to the family council but it's for the kids to get a chance to learn to advocate for themselves and educate adults on their medical setbacks. I will be looking into this but have not tried it yet. I was recommended to create a 'GoFundMe' page, where donations can be made towards a medical fund for me, and I have that up and running now as well (see 'Elaina's Lyme Fund'). I plan to do reviews and educate as many people as possible on the different programs I have learned about to save them the distress of feeling hopeless like I have. Maybe I can help someone to a better place in their journey one day. After all, that is what advocacy is all about.

My First Few 'Portless' Days

As soon as I escaped from the hospital that Friday, after my port was removed, I was ready for a nice hot shower. I had to wait 48 hours, but I was ready. After 14 months of the port being in, having to attempt to keep it dry, try not to sweat too much with it accessed, tape it up for each shower, and avoid repetitive motions, I was ready to live a 'port free' summer. I left the hospital in pain, having only spent a few hours at the Ambulatory Care Center for the procedure. My collarbone ached from the tube being pulled from around it, and the topical anesthetic began to wear off throughout the day. That entire weekend my right collar bone and upper chest ached from my body readjusting to the empty space and trauma inflicted on it. I prepared Saturday for Easter by going shopping with my mother. I wanted to get hair dye, because I tried going red before surgery as an act of teenage experimentation but I hated it and had been waiting to try and dye it back. I still could not stand or walk long without getting out of breath so I had to take breaks to walk the few feet into CVS and look through the color options. That night, after 36 hours, I decided to color my hair with my mother's help. The shower was the best I have had yet, though painful. The color toned down the red, frustratingly enough not fixing the problem completely. It was good enough to be decent for Easter pictures and I opted to color it again the next weekend to try again. Sunday morning came and my shoulder area was at the peak of it's soreness. I was well enough to take pain medicine and pull a dress on over my head. After makeup and hair were in place I was ready to head to the family Easter dinner and do some family pictures. 

Cousin portrait for Easter.

That weekend was a great time for me, realizing that the upcoming summer would be a good one. I realized that upon full recovery I would be able to shower without the tape, and jump in the pool to cool down. I would be able to have an even tan, not stay home every Monday morning for visiting nurse appointments, and start upper body exercise. I would be able to forget worries about germs and infections, not have to be on IV medicine treatments twice a day, and not have to avoid pressure from strapless dresses and backpacks on my right shoulder. The summer would be that of freedom, of healing, of hope, and of adventure. I only pray that it will be everything I dream of, fulfilling it's true potential as the summer I turned 19, survived open heart surgery, and was completely IV free. 

Echocardiogram Results and Transesophogeal Echocardiogram

An Echocardiogram is a very interesting test. I watched in amazement as the technician placed the gooey ultrasound probe to my ribs, and my beating heart appeared on the screen. She searched around the top of the heart and aorta, exploring every nook and cranny, snapping pictures along the way. I asked more about her schooling and career and became increasingly intrigued by the possibility that I could also see myself in the field. She picked up the probe and covered it with blue jelly, then pressed it along the bottom of my rib cage, letting the ultrasound waves travel upwards into my heart and back again to display the picture. immediately she paused in this new position, and stared. Shifting a few times she asked about my port.

"That's just a regular port, like ones they give for cancer, right?"

"Yeah, a power port", I responded as concern grew inside me. I could see her face change from monotonous with the early morning routine of seeing yet another heart pumping in my small chest cavity, to concentrated. I knew she was questioning something, and the conversation from before withered. Her eyes peered straight into the dark clouds in the screen.

"I have to double check something with Dr. Lootens, and I'll be right back. You can get dressed now" She left the room in a hurry and I knew she was trying not to worry me. I had seen a million ultrasounds at this point, and knew she noticed something. Assuming it was just the tip of the port, dangling in my Aorta right above the heart, I changed out of the hospital Johnny and into warm clothes. She retrieved me and asked me to wait in the waiting room while she grabbed the doctor for a few more minutes. So I sat down, and stared at my hands in my lap. Five, ten, fifteen, then twenty minutes passed. Eventually somewhere past the lapse of time the Cardiologist's head popped through the door and he sat down beside me.

"I don't want you to worry, Elaina, but we did find what looks to a Myxoma in your heart. Ultrasounds work through about seven layers of tissues and bones, and are not the clearest picture, so it could either be a Myxoma or natural tissues. To see it closer we would want to ultrasound you closer to the heart with a Transesophogeal Echo-cardiogram that goes on a cable down your throat while you are sedated."

I listened intently, thinking an array of worries from 'Is this a normal occurrence', to 'should I be worried', to 'wow, they can do an ultrasound from inside? Cool'. All my thoughts circled and thinking thoroughly I wanted to double check one thing.

"Are you sure what was seen is not port related, maybe something on the tip of the port or the tip itself in the ultrasound?" I asked, wearily.

"I believe, if this is what I think it is, that it's something that has been there for awhile." He paused, as if thinking of his next answer. "I will be asking around to get opinions from other doctor's today, and possibly performing the Trans-Echo to get a better look at deciding a course of action to take. Is that a number we can reach you on?" He pointed to the cell phone clenched firmly in my fist.
Nodding my head I loosened my grip and began to gather my things. I bid a farewell of sincerity, thanking the Lord that I trusted this physician. On my way to my car I thought of what this meant, and called my mother to research what the word meant, Myxoma.

Turns out, a Myxoma is a slow growing tumor inside of the heart. Not cancerous, being that the tumor cells can begin there at birth and slowly grow to being large enough to block blood flow and cause many additional symptoms, sometimes ending in sudden death. This is not to be of concern, seeing that I have the introspection enough to know I recognized symptoms early enough to possibly catch this in time. Treatment is surgery to remove the tumorous tissue and cells, and biopsy to make sure it is benign. I go in Wednesday for the Ultrasound surgery, where I will be sedated and have a probe on a cable lowered through my throat to get a close up view of my heart from the inside. We will reassess after that procedure and the results of the Holter Monitor on a decision of what the problem actually is, and make a future plan at that point. Like the specialist said, it could still be nothing. At least I know my heart still beats strong for Valentine's Day.

Result of the Cardiologist Appointment

I had my Cardiologist appointment yesterday and I must say, I had the best appointment possible. The specialist was incredibly compassionate and understanding, hearing me out about the fact I suffer from Lyme Disease and have been on and off of treatment for 5 years and on IV antibiotics currently, even acknowledging the port and saying the two magical words: 'I understand'. He seemed to have a few different ideas of my prognosis, and wanted to run a few more tests to see what is going on. He believed me, listened, explained everything fully, and held eye contact. These are difficult traits to have with a consultation appointment nowadays with the medical field feeling entitled and sidetracked, calling every patient a drug seeker or hypochondriac. However Dr. Lootens of Concord Cardiology was not the cookie cutter physician. He was amazing, and I'm excited to work with him on figuring out my high heart rate and heart palpitations. Currently I had a 24 hour Holter monitor on to record my heart rhythm through everyday activities, which I return in a few hours and wait a week for the results. Next Wednesday morning I have a Echo Cardiogram where they will ultrasound the structure of my heart and cancel out the possibility of physical defects. These two tests should answer a lot of questions, and if needed we can try to push the insurance company to cover the new 2 week Zio monitor, a silicome patch on the chest that is waterproof and adhered on, measuring the heart and blood pressure for two weeks straight to give a better picture of the possible problems. The hope is to find something that does not require a long term treatment. There must be something going on, as I have suffered palpitations for almost 2 years and my heart rate can reach 200 bpm with a simple moderately inclined walk at the gym in a matter of 3 minutes. Hopefully this is just the result of genetics, high heart rate runs in the females for 3 generations. Possibly the cause of not being in shape. For now I wear the monitor and hope for answers, waiting for the return to the office on the 19th.

Planet Fitness, Starting Out!

After months of deliberation I decided that living in New Hampshire is not conducive to a work-out friendly outdoor environment. My friend Rose and I had wanted to start getting active again. I wanted to raise my serotonin and fight depression, anxiety, and fatigue while strengthening my legs for horseback riding and skiing. She wanted to lose weight and gain strength for military goals. We have both finally signed up for the planet fitness black card and decided to split the $20 per month price. It has been almost a month of exercising, and though I have had some problems between my heart rate and liver, and even some magnesium deficiency I can truly say I have made the right decision. I go late at night typically, and as much as possible. Every day is difficult since she has school and I have a chronic illness and also work and classes at night, but I manage to push through a lot of obstacles to get to the gym for an hour or two. Already after a few short weeks I have increased my weights with my lower body from 30 pounds to 90 pounds. I do 15 repetitions, 3 to 4 sets if I can and only after 15 minutes of stretching and 15 minutes of a walk/jog on an incline to warm my muscles up. It is not easy for me, as my body hurts and arthritis flares in the winter months, but improvement is really important. If I can improve every three weeks at this rate, I will notice a huge difference in 3 months time and be conquering my leg workouts with at least 150 pounds and a 10 minute jog. These are realistic goals, and important for my future coping strategies with my disease. Being able to bring my friend along with me and have us help each other out is that much better, because 75% of what's tough about going to the gym is GOING TO the gym. Once you get there you're golden!

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.

Two Steps Forward, Three Steps Back

After four weeks of being on IV Doxycycline, the last medication left I had to try for IV, I still felt no better. My memory betrays me just as it does those around me, and I forget the exact reason why I stopped IV Doxy. I remember a phone call with the nurse at the doctor's office saying it would be best to stop the medicine, maybe from me still not improving? They wanted me to start back on Mepron for the month, and I only remembered to take the yellow paint-like liquid once. In fact for almost an entire month I completely forgot probiotics, Nystatin, B12, and Magnesium which are all important supplements I take to help me get through from day to day. I was told to wait another month and see if just the Clindamycin would do anything, however I knew in my heart that it wouldn't. Why sound so pessimistic? Well, I know I've been on the medication in the past, two separate times. I know that once you do a medication seriously and then stop, the bacteria tends to seem more immune to the substance in the future. Some argue that fact with the idea of pulse therapy where you start the medication for a short bit of time, then stop it long enough for the bacteria to be caught off guard when you restart two weeks later. Pulse therapy is a very common treatment plan used by New York specialist Dr. Horrowitz, I believe, not something that ever worked in my situation. For some people, those more sensitive to medication changes that feel Herx type reactions with treatment, Pulse therapy can be the difference in successful treatment. I have always been difficult to treat, with a poorly absorbing stomach and impossible Lyme symptoms. Very few medications made me feel a possible Herx, and very very few made me feel better. There was a total of two summers I did very well with no rhyme or reason, and I am beginning to think it was more heat and mild weather related than it was medications. Beside all of that, I also know that the second time I tried Clindamycin back in the spring, I felt no effect from it. My main hope in my treatment after leaving my LLMD's office was for the Iv Doxycycline, keeping at the forefront of my mind its effectiveness in treating Lyme and Coinfections like Bartonella and Babesia, both I'm suspected to have. For now I slowly decline until I see my Doctor again, dealing with other issues in my personal life, and trying to survive a more normal life as a student and part time employee.

Social Security with Lyme Disease/Related Disability

One of the biggest questions many Lyme sufferers or people with coinfections have is what to do now that they can't work, or haven't been working. I have not been able to answer much of these questions, or give further information. Recently someone emailed be an article to help give insight on what help is out there, and how to go about receiving that help, as posted below:

"Applying for Disability Benefits with Lyme Disease

Although Lyme disease can be quite debilitating, its affects on each patient are different. Additionally, because the symptoms of the condition can be quite pronounced at times, and go into relatively long periods of remission, it can be challenging to receive qualify for disability benefits through the Social Security Administration (SSA) for this condition.

Though difficult, it is possible to prove disability and get the benefits you need, if your Lyme disease is so severe that it prevents gainful employment for a period of 12 months or more or is expected to do so, given the extent and type of symptoms you experience.

SSA Disability Programs

The SSA has two disability programs for which you can potentially qualify with Lyme disease. The first, SSDI, or Social Security Disability Insurance, is a program designed for disabled workers. SSI, or Supplemental Security Income, is the second program, and it is a need-based benefits program designed to provide benefits to disabled workers and/or their dependents.

Basic Eligibility

To be eligible for SSDI and/or SSI, you must meet the basic medical requirements for proving disability. These include:

• Having a medical condition that can be substantiated through standard medical means, meaning it must be proven with significant medical documentation and that documentation must satisfy the SSA’s evidence requirements.

• Suffering from a disability that has been, or is reasonably expected to be, present for at least 12 months or which is terminal.

• Your condition must prevent you from maintaining gainful employment in any job for which you would otherwise be qualified.

The previously listed basic eligibility requirements satisfy the medical portion of eligibility for SSDI and SSI; however, each program also has technical eligibility requirements.

• For SSDI, you must have work credits from your previous employment, and must also not earn more than the SGA, or substantial gainful activity, threshold in monthly earnings from employment. You can learn more about SSDI here: http://www.disability-benefits-help.org/ssdi/qualify-for-ssdi

• For SSI, you must have very limited income and other financial resources with which to support yourself, as this is a need-based program. You can learn more about SSI here: http://www.disability-benefits-help.org/content/about-ssi

Qualifying with Lyme Disease

To meet the SSA’s medical eligibility requirements, you must fully document the affects of your Lyme disease on your ability to work and your everyday abilities to complete tasks in your personal life as well. While the SSA has no dedicated listing for the condition under which you can qualify, there are multiple listings in the SSA’s Blue Book (http://www.ssa.gov/disability/professionals/bluebook/) that may be applicable to your claim. This is because Lyme disease can have severe affects on multiple body systems.

To qualify with this condition, you must:

·         match a listed condition in terms of severity level

OR

·         document that your residual functional capacity (RFC) is so limited that you qualify under a medical vocational allowance (MVA)

The following conditions may be ones that your Lyme disease application can match, provided you have the appropriate medical documentation to satisfy the SSA’s evidence requirements:

·         Musculoskeletal System – Section 1.00

·         Cardiovascular System – Section 4.00

·         Mental Disorders – Section 12.00

·         Inflammatory Arthritis – Section 14.09

It is also important to note that the SSA will take all of your symptoms under consideration when determining if you meet the eligibility requirements for receiving Social Security Disability (SSD). In other words, if your symptoms fall under more than one of these listings, the SSA will consider the medical evidence you provide in comparison to multiple listings.

Starting Your Application and Getting Help with Your Claim

If you are ready to begin your application, you have two options for getting started:

• visit the SSA’s website, to start your application immediately,

OR

• contact your local SSA office, to schedule an in person interview during which your application will be completed.

While it is possible to receive disability benefits for Lyme disease, it can take a long time for your application to be approved. You may have to go through more than just one round of reviews before the SSA finds you eligible, and you may also have to appear at an appeal hearing, if your claim is denied more than once.

Seeking the help of a Social Security Disability advocate or attorney before filing your claim is advisable with Lyme disease. However, an advocate or lawyer can assist you at any stage in the application and review processes as well, and can potentially increase your chances of being approved for benefits."

Article by Ram Meyyappan
Social Security Disability Help
www.disability-benefits-help.org/blog

Hopefully that helped somewhat, though it is a mindful to read. I put this out there as a reference for many people starting to navigate the hoops of this illness and survive even when the going has gotten rough.