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.

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.

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

Hyperhidrosis

'Hyperhidrosis' is defined as the condition of abnormally increased perspiration, more so than is needed for the regulation of body temperature. For about 10 years, since I was just a little girl, half of the back of my left hand would on and off drip sweat. I'm not talking drops, I'm talking soak through my sheets, drench paper towels, gather into a stream on the back of my hand type sweat. It has only been on the back of one hand, and I never understood it. I do not at this point believe it is connected to the Lyme, but I think the supposed Babesia with symptoms of night sweats and endocrine problems, could be worsening it in the past five years. I went to a dermatologist when I was in fourth grade, but he was not sure what it was and had no solution for me. Deodorants have worsened it instead of helping, and I never knew, this entire time, what was going on or that there was a name for it. Every doctor I had seen said it was the weirdest thing they had encountered and had no help for me. They said I was the only patient they knew with such a problem. Recently, my PCP told me I had reversed sweat glands on my left hand, so they were on the back instead of the palm. My right hand is fine, but not the left. Sometimes in the winter it gets so bad I can't wear a glove on that hand or I sweat straight through the water resistant winter glove! This made working at a ski resort and ski racing so difficult. Finally I found my way to google and typed excessive hand sweat, and that led me to a new door opening up. I found my way to the International Hyperhidrosis Society, with information and tips on treatment and even a doctor locator. http://www.sweathelp.org/en/

I found one doctor and got a two week appointment with him, which I saw last Monday. He was quiet and conclusive but had terrible bed side manner and I will not be returning. He wrote a prescription for something to put on my hand, did not tell me anything about it, and sent me off in the matter of a few short minutes. I have an appointment saved with a doctor at Manchester Dartmouth-Hitchcock Medical Center in Manchester, NH and will be seeing him in August to get a second opinion and see what he can do to help. I hope this post may find someone else suffering excessive sweating that needs a direction to be pointed in as well.

Babesia Treatment Started 6-17-09

Babesia, one of the many co infections of Lyme, is not easy to treat and can cause many symptoms that can disable someone to regular every day activities. This strand of bacteria alone has hundreds of different strands within itself, and is something that my family was not comfortably able to afford testing for. Through Igenex labs in Ca., the one trustworthy Lyme Literate lab in the U.S. that tests for all its infections CORRECTLY, It will cost somewhere up to or around $600 for the extended co infections testing. Just for Babesia, or Bartonella testing, it is somewhere over $100 a piece! This is pricey, as the co infection tests are far more extensive and tough to execute than Lyme Disease. In fact, it is tough to even get one of these tests done through a local lab, and it is almost a waste of time in my mind as it won't be accurate enough to barely tell you anything. However, every person has different body types and the bacteria may show up more for one than another...... it is all dependent on the way god wants it to work out.

So if testing and diagnosis is so difficult, then you can imagine that treatment is tough too. Most of my symptoms (headaches, sleep apnea, concentration, dizziness, fatigue, stretch mark-like rash) all point to Babesia and/or Bartonella. We have tried treatment towards Bartonella and got no effect, so now we have pulled out the big weapons and are going to pack a huge punch to Babesia! Since 6-17-09 when I saw the LLMD, he prescribed Zithromax (a powerful antibiotic usually prescribed in a five day dose to last up to 14 days) so that it could treat Babesia and/or Lyme, mostly Babesia. There are some treatment regimens that claim treatment of co infections before the Lyme is more effective. For me only time will tell. The Zithromax is an every day 500 Mg. dose for me, to be taken by itself without herbs/supplements/vitamins. This is tough to accomplish when you take near 62 pills a day. The effect of the Zithromax was that I had a herx reaction (finally after trying medicines for 9 months with NO effect but steady worsening. Con was that It was July 4 weekend to start with, keeping me out of some exciting events, and that we had roped ourself into puppy sitting that weekend, and I was suppose to help a LOT.). Then I realized a very slight reduction to headache pain. It was just enough to take the edge off of the constant pain I felt, and enough to encourage me to get to work with my summer project of completing redecorating my room.

7-22-09~ the LLMD appointment went good. It has been decided that I am starting Mepron to go with the Artemesia, and Zithromax for a full blown Babesia treatment! The issue is in the Mepron. It is only an oral medicine, that comes only in liquid form, and only in Citrus flavor which I don't even like! This medicine is the thickest, and most NASTY medicine I have ever had to take. It is bright yellow, like a school bus, and literally the texture of paint, Elmer's glue, or nail polish. It feels like Concrete running through your system, and I can feel it moving through my entire GI track, which isn't very appetizing. Having to take a teaspoon of Mepron twice a day right after a meal is kind of similar to having to drink Barium before an Upper GI Test. It has a bad flavor, worse texture, and worse effect of toxicity of my body! I thought nothing could be worse than the Bicillin Injections I tried.

I hope though that this Mepron will move through all my body systems and effectively sweep the Babesia infection out of me, making me feel well enough to move on with my life dreams and aspirations.