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.

New treatment plan, Doxycycline and Metronidazole

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 Metronidazole 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 Echo-cardiogram, 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.

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

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. 

20/20 Interviews Wrapped Up

For the past two days I had a national team on my property and in my life to get to know me. They saw my room and watched as I took medicines, wrapped my IV up, prepared for a shower, wrote a new blog entry, visited my miniature horse, ate ice cream, and performed regular activities. Nothing about the experience was regular however. It was surreal having strangers going to and from and putting a microphone on you and following you around. I'm used to just doing my thing pretty quietly but there was nothing quiet about the new visitors. We spent today doing interviews in my grandmothers kitchen 20 minutes away. Jay Schadler and I sat on the couch and talked for close to two hours, three quarters of that being intellectual interview questions. I had the speech problems all day but pressed on to do all that talking and hung in there while my mom and boyfriend were also interviewed. As quickly as they had swarmed in, they packed up and hit the road to track down my Lyme doctor and get an interview with him. Now that they have all the film they need, it is up to the editors to portray it correctly with the information and support we need in the Lyme Disease community. I'm in sweet celebration now for all the stress of it to be over and be able to sit back and watch the rest of the process take place. Maybe this will travel to other interviews in the future, or maybe not. As long as people can get a better perspective on the hell that is considered my life, that is all that matters.

 Interview time!

 Me Getting a Mic on.

Interview camera angle.

May is Here! Back on Medications

After three Hyperbaric Oxygen Treatments through April, I discovered no improvement and actually felt worse after each session. The oxygen must have pushed the Lyme out of my tissues enough that it caused weekly depression spells that were debilitating. I decided that was not what I needed right now being in such rough shape. On the fourth week of my medicine vacation I found myself brought back down hill and almost into the wheelchair again. Memories of last summer's struggles filled the late Saturday night air, as I suffered from head and neck spasms, neurological upset, and speech problems. I took what medicines were on hand to calm the sudden episode from a day filled with activity that my body was not yet prepared to handle, and stayed in bed for the next two days. After the rest and much practiced handling of my symptoms, I was up again in no time preparing for an Air Force ROTC Ball. Yet again, the following Saturday night after the days events and the ball, I found myself downhill from exhaustion and suffering autistic-like symptoms and the speech problems all over again. A day later with some rest and I'm now again getting ready for prom. This is my Junior prom, my second year going and I am far more nervous than last year. Exactly a year ago I was carried home in a trembling mess with the most unexpected Lyme Disease symptoms. That gives me enough grounds to remember that frightening experience and move forward on a prayer for a better one this time. The Picc line has been in 11 months, and I am now being put on Clindamycin Phosphate for the persistent symptoms that were not touched by the Rocephin like we had hoped (along with Omnicef which I have tried once before and Zithromax for Bartonella Symptoms). Within the first six hours of my first treatment on the new medicine, I suddenly experienced a raging Herx reaction (A Herx is a positive response to medication that seems negative, better explained in my earlier post called the Herxheimer Reaction. It basically means the medicine is killing off the bacteria). It lasted for at least 48 hours and left me feeling dizzy, weak, restless, irritable, in a general state of intense pain, and nauseas. After that cleared it took me all my energy just to manage a shower and keep breathing. Since then, I have started with what we believe could be Gall Bladder problems. I had such great pain in the event of an 'attack' on Tuesday evening, I literally could not breathe and was scared for my life due to the pain. Whats worse then such a turn of events is the shock of being scared to enter the Emergency Room knowing that you will not leave with answers because you are such a unique case. That's the shocking encounter I deal with every trip to the hospital, and I have said many times that 'I would rather die in my comfy bed with my family and pets than at a hospital that doesn't know what to do with me'.

Bartonella, Babesia

This is a little update and info on co-infections. Bartonella and Babesia are only one of the most popular co-infections in the tick disease community. (Bartonella is also known as 'Cat Scratch Fever'.) The marks for the traditional Bartonella 'rash' mostly appear somewhat as stretch marks in deeper purple or red along irrational spots on the body, but some get faded, these are stretch-mark impersonators that don't look anything to worry about. Young children, elderly people, even anorexic sufferers can get this awkward design on parts of the body(seen it in a book somewhere..). I know this from my mothers research to discover the cause of my bright purple marks on the inside of my thigh. They are slightly raised, and in the cork- screw shape almost like the spirochete itself! I was shocked when I first realized them one day trying on clothing. This was new, it just appeared, and was bright! (To make clear before continuing I have not yet been diagnosed officially with any co-infections as the IGeneX testing was too expensive for this workup. I have been assumed by my LLMD to have some sorts of co-infections, due to my symptoms and reactions to medicines.) These marks frightened me and I showed my mom. I had gained about 50 pounds over the year due to medicines, including growth in height, and foot size, and not being as active. I knew they looked similar to a picture I had seen before. Months later she was researching pictures on the computer and saw EXTREMELY similar marks from another female teen's thighs, and they looked exact...

So over time we concluded the reason and have printed pictures to show my LLMD next appointment. my brother has marks alike on his torso and shoulders, some on his legs that have gotten worse, moved, faded, and lengthened over the past year that we believe are Bartonella. My mom is getting him and my father tested for Lyme and making appointments for the LLMD.

So if you know someone or think someone has irregular marks, DON'T put it off for any further length of time, see a Lyme friendly Doctor and get the test done!!! A few herbs can take care of it for a length of time, or a while of antibiotics. I can't stress it enough how important it is to treat it ASAP... I would hate for more to suffer for a mark that looks like a stretch-mark.... But wouldn't you be concerned too if you were (or some cases are) in my shoes?

Babesia is similar, treatment and symptoms and testing. I may have that too considering my sleep issues, headaches, fatigue, and so much more similar symptoms. research up on this disease so you can help others near you!