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Thursday, December 18, 2014

New treatment plan, Doxy and Metrinidazole

After suffering for years and years with different types of treatment plans my doctor and I stumbled across a new one that works really well for me. I'm taking Doxy at a smaller dose to not upset my stomach, and Metrinidazole which treats other forms of bacteria such as coinfections. With this combination I'm feeling a decrease in almost all of my symptoms.

Completely unrelated, my heart symptoms of palpitations, fast heart rate, dizziness, etc. became worse for the first time in months. I went through a Holter monitor test, another Echocardiagram, and a physical to try and diagnose the source. After finding nothing, it was decided that my Bartonella has now moved into my heart and is running wild creating symptoms that can't be caught on film with no rhyme or reason to them. I feel the aching pain in my heart, my sternum, and my collarbones still. Sometimes I run my hand down my sternum and feel the permanent ridges protruding from a bone that was one sawed in half. I feel the claviculae joint pop and crunch as my collarbones shift around. I even feel a knot at the top of my sternal incision scar that still had bit faded yet and remains a bright red bump. I perform scar therapy on all of my scars by massaging them and applying a silicone liquid that's supposed to soothe them away. Most of my scars are already disappearing, fading away into small white lines. I know the knot will subside too in time. My mother's research says maybe 2 years, but it will one day be barely visible. I see actors on my favorite shows with faint white lines down there middle of their chest and feel so much more relatable to them, like we have so much in common. Maybe one day even my significant other would be able to understand what I've been through from first hand experience, though I do not wish for that.

These battle scars will be reminders of where I came from but mostly what I can overcome as I push myself to future goals. I pray that my Lyme symptoms stay under wraps as I take the next journey forward in my life. I know stress can make it come back full force once again, and I know exercise and diet may be keys to successful future treatments.
Tonight I remember where I was at the beginning of the year, when I signed up for my first gym membership and how I thought the year would go. I never knew it would have turned into this, and I haven't returned to the gym because of my pain and undiagnosed continuous heart symptoms, but I remember where I was so I know how far I've come and what is left for me to still experience.

Friday, October 10, 2014

Been a Long Time Since I Posted

It has been a long time since I have updated everyone. Basically my life had spun out of control and I needed to get a hold on things. Here is where I'm at, bear with me as my scatter-brain leads you up until the current events in my life. The Zio patch test came back fine, which is a good sign. I stopped the blood pressure medication and attended the gym on my own to restrengthen my cardiac stamina. I stopped the cardiac rehab with the heart monitors and was relieved to go back to a more normal lifestyle. My Lyme symptoms all got increasingly worse. My regimen of Clindamycin, Omnicef, and Tindamax did not do anything for me as I got increasingly worse. I just recently visited my LLMD who put me on a regimen of Paxil for the anxiety (finally working with no worsened side effects), Amoxy, Doxy (good because the sun sensitivity won't be overpowering in the fall and winter seasons), and Flagyll. These medications are supposed to attack the cystic form of Lyme, Bartonella, and Babesia. I also still take probiotics, Nystatin, Axid, and Zyrtec. I visited my hematologist who said my second Lupus Anticoagulant tests came back negative, so I have an unnamed clotting disposition that could be a problem worsened by the Lyme. It will keep me from ever getting IV medication again, or ever taking hormonal birth control. I go in for the Paraguard IUD, because it's non-hormonal, next week. Also I will stay on daily baby Aspirin to keep clotting instances from happening.

My symptoms currently include the worst fatigue I've ever felt, tendonitis, overall pain mainly in the torso area and lower back, headaches which I just got glasses to assist with, ear problems, nausea, dizzyness, fainting spells, joint inflammation, brain fog, memory loss, confusion, narcoleptic episodes, loss of concentration, anxiety/depression, and lack of appetite, Those are the major symptoms not including the occasional episode of night sweats, sleep insomnia, or muscle spasms. I can say that starting the new medications two weeks ago have already shown they are keeping symptoms from getting worse. The pain has subsided a small bit, while tendonitis worsened. I am hopeful they will work to keep me from my usual winter seasonal decline in symptoms. Currently I have been too tired to think about going to the gym. I fall asleep in classes or while driving, and go to bed as soon as I get home. I long for naps during the day, and have no motivation to move from the couch or bed, I sleep 10-14 hours a night but still want nothing more than to sleep. It's hard to hold a social life when you feel dead by nine, can't stay away to drive home, and feel like taking a nap instead of eating dinner. In fact I choose not to eat when it means walking to get the food, and instead doze off in my seat. This is a new profound exhaustion then I have experienced before. I know I need to gain cardiac stamina but just find it too hard to think about a walk or exercise. I feel distanced from many people and have to choose whether I socialize or do homework. In fact, most of the time I skip my homework and try to leave early from my new part time job because even though I'm smiling, I'm dying inside. My anxiety wake me up first thing in the morning, shaking and nauseas until I get the Paroxetine in my system. I also head to bed at night fighting depression and wanting to just never wake up. Hopefully I have more positive updates soon for all my faithful readers.

Tuesday, July 22, 2014

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.

Thursday, May 29, 2014

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.

Tuesday, May 20, 2014

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

Friday, May 2, 2014

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.