Lisa ~ Lyme Disease/Pots

Diagnosed With: Lyme Disease, Bartonella, Babesia, Erlichiosis, Chlamydial Pneumonia, Pots, Anemia, Panic Disorder, Agorophobia, Anxiety

Here’s the basic outline of my life with Lyme. Before I was sick I was happily married, had three wonderful kids. I was very active in their schools and was a Brownie leader. I had jobs I loved. I worked in healthcare. I went to school to be a medical assistant and worked in a doctor’s office for awhile but decided I liked long term care better. So I did a mixture of jobs from home health care to working at a nursing home and working at a group home where I took care of mentally and physically handicapped men. I loved working. I also loved the outdoors. We lived in Illinois. My family had a cabin in Northern Wisconsin, and we spent many weekends up there. Sometime in the early 1990’s something started to change.

The first time I remember something being wrong was when I went to a mall with my friend and my heart started pounding. I got really dizzy. My stomach started hurting and I felt like I had the flu, my friend took me to an emergency room and they told me it was a panic attack. That was the beginning of a long list of different diagnosises for me. The next day I still didn’t feel right. I started going to the emergency room daily, sometimes more than once because of my heart racing or palpitations. My head felt funny and I couldn’t focus. What is this, how can I be normal one day and then sick the next and it won’t go away? How come none of the Drs are taking me seriously or doing more tests? I felt so sick I was scared to go anywhere. I constantly felt “faint” I had complete anxiety all the time. Eventually I wouldn’t leave the house for three months. I became agoraphobic. I stopped volunteering in my daughter’s class. I quit my Brownie troop.

Trying to take care of my kids was so hard. I had one daughter in school and two at home. I was so scared of my kids and husband thinking I was crazy. After all, all the tests said there was nothing wrong. My husband was so patient, he’d just sit there at the end of the bed asking what he could do to help. I couldn’t even come up out from under the covers anymore. I just wanted it all to end.
Around this time two of my kids started having fevers and seizures also. And my son would wake up with a swollen ankle. I thought maybe he had fallen out of bed in the middle of the night. Xrays would never show a reason for it. My oldest daughter’s glands behind her ear got all swollen and she was diagnosed with Cat Scratch Fever (Bartonella). I had never heard of lyme disease and never connected any of this to a tick my daughter had embedded in her head. The Ers would just diagnose my kids with different viruses or infections and I was told not to worry about febrile seizures. That some kids have them and they will just grow out of them.

I will never forget the first seizure either of them had. My son was laying on my lap and we were watching tv and I looked down and he was blue. His eyes rolled back and he started shaking. A couple weeks later I found my one and a half year old daughter convulsing on a laundry pile. Each time the hospital dismissed it. My daughter had the chicken pox so they said it was just a fever from that causing it. And my son they really didn’t give me any answers. Just said it was febrile seizure. I was so scared because he had been born with a ventricular heart defect and I was scared it was somehow related to his heart. But how come they both all of sudden started seizures at the same time? And my oldest diagnosed with Bartonella and Giardia? This was so strange. Why were we all so sick all of a sudden.

I felt like I was going crazy. I just never felt right. I continued on between staying home and runnin gto the ER. Once I was hospitalized for a couple days. My Dr. said I was dehydrated and looked sick. Several tests showed nothing except an ultrasound on my heart showed “possible” mitral valve prolapse. But again, I was told not to worry about it, it was a benign condition. Then I was released again with no answers.

When my son was four he had open heart surgery for a hole in his heart he was born with. Even though the surgery did not repair the hole in his heart it was supposed to, there was probably a benefit in that he was on iv antibiotics for three weeks in the hospital. The surgeon had told me he would be in the hospital for three days. But he ended up getting pneumonia and part of his lung collapsed. He also developed a condition called heart block. So he was put on iv antibiotics. This might have stopped lyme from progressing if that is what was causing the fever, seizures, and swollen ankle. One thing I remember is he kept getting hives when they’d start antibiotics. It was to antibiotics he had taken in the past that he didn’t have problems with. Looking back I wonder if this wasn’t a herx reaction? My daughter,Danielle continued to have febrile seizures. Both of my kids suffered from learning disabilities and other problems. And Matthew had seizures until he was six years old, which I was told is way beyond when a child should grow out of febrile seizures.

In 1992 we moved to a new house. I never felt right but had just accepted that I had panic disorder. I couldn’t handle working. I felt nervous and like something was wrong but Drs still couldn’t find anything. At this point Drs had me on several meds from Ativan to Prozac. Nothing helped and most anti anxiety drugs made me even feel worse. I had so many bad reactions to meds that I have now developed a big fear of starting new meds. This has really hampered my treatments. That year was spent taking care of my sick kids. I rarely left my house.

In 1993 we moved to Arizona. Again I started seeing all the different Drs there. This time I had insurance and wow, did I notice a difference in how Drs treated me. Now they were ordering tests! But again could not find what was wrong, so they said also, anxiety. I joined a panic disorder group there. But I as I listened to others stories, I noticed there was a difference. Most of the people in my group would be at a store or in some stressful situation, go into an attack, but it would only last so long and then they’d be okay Why did mine never go away? I would wake up from sleeping with my heart pounding. It would go on through the day. I just knew something more was wrong. But if it was why is it not showing up on tests?

Then I started getting horrible heart burn. It was so bad. I kept going from Dr to Dr trying to find out why. A charcoal swallowing study showed acid reflux and hiatal hernia.I staretd taking prilosec which after about a month helped but didn’t completely get rid of the pain. Shortly after this my neck started to get really stiff. I started to develop really bad back spasms that would put me in bed for days. One day I developed a fever. I started hallucinating that the room was made of dots. I started to develop big hives up and down my thighs. Which lasted for about three months. Drs. gave me steroids. Diagnosed me with Desert Valley Fever and later a Black Widow bite. Later tests showed negative for Valley Fever. I wondered if I had different diseases, could all these symptoms be related or do I just have a lot of different conditions? I was still just taking Lorazepam but it only helped to take the edge off. One Dr prescribed me Biaxin. By that night my ears were ringing, my fever was back, my stomach hurt and I got so shaky and sick. Again looking back, I was probably havng a herxheimer reaction. When I called my Dr and told him how sick I was he told me to stop taking the medication.

I was trying to go to school to be a medical assistant. I did good, living on Lorazepam though it, but once I started shaking so bad that my teacher decided to call an ambulance I almost fainted. Of course all tests came back normal again. They switched me from Lorazepam to Valium. After I graduated school I got a job at a Dr office, still had hives on my legs again and kept getting fainting spells. I would be fine one minute and all of a sudden I’d get all light headed andn I’d feel like I couldn’t stand or else I’d faint. The Dr I was working for thought it was because blood bothered me and just blamed it on that. It wasn’t. I felt like I was dying. My marriage fell apart and I moved to Wisconsin to be with my sister who was also going through a divorce. At this point I was completely irrational. My husband was the nicest man. I couldn’t explain why I wanted a divorce. Just that he deserved someone not sick who could be a “wife” to him. I didn’t understand myself, why I was feeling this way.

From 1995 to 2000 I still thought I just had panic attacks. But then I started having chronic yeast problems. Then chronic tonsillitis. I started getting infections that I just couldn’t get rid of. At night I would hallucinate spiders were coming down on me from the wall. I gave up on Drs for a while. Started drinking . The only way I could go out with friends without having panic attacks. Drinking is how I coped for the next couple years. I noticed that when we all went out drinking that my friend’s would be sick a couple hours in the morning. I would be sick for days. I couldn’t stand up or else my heart would feel like it was pounding out of my chest and I’d get this feeling like I was going into a tunnel, like I was gong to faint, but I never did. So I quit drinking. I got to where I could not even drink one drink or I’d get this sick.

I still was having anxiety and dizzy spells. I went back to Drs again, they tested me for Diabetes I don’t know how many times. Every blood test would come back normal. Eventually I got a job at a nursing home. One day I noticed I was having a hard time holding a fork while eating. It felt like my muscles were just getting to weak. Or like they weren’t responding to what I was trying to make them do. It’s so hard to explain. I just couldn‘t grasp something. My legs were starting to get so weak I could hardly stand. And I felt like a had an electric current running though them. A constant “buzzing” feeling. I started getting a ‘shock’ feeling in my neck. I’d just be sitting there and all of a sudden I’d hear a loud click and feel like everything went white and I felt a shock run through my body. It was crazy. I was scared to tell anyone. I was also working a second job at a home health care company. I was being trained to be a director in the office while still working in the field. One day a lady I was taking care of, her walker started getting ahead of her and when I reached out to try to stop it, I couldn’t feel my hand. In the next week that numbness moved to my right leg. My knees started to hurt. I couldn’t feel if my foot was on the accelerator in my car. My feet started having all kinds of strange sensations. One minute they’d feeling like I was standing on fire, the next they were icy cold. In the morning the bottom of my feet, especially my heels would hurt so bad when I’d first get out of bed. I could hardly stand up. But it would go away after a couple minutes.

At the office I couldn’t concentrate, I’d answer the phone and forget the name of my company and go totally blank .I had to tape a business card with the name of our company on the computer so I’d answer the phone right. I’d also get lost when I was driving. One time my daughter was in the car with me and she said, “Ma what are you doing.” I looked up and I had pulled into someone’s driveway. I was just sitting there, not knowing why or what I was doing. I was so scared. How can there be nothing wrong with me? I started going back to emergency rooms. One time I went two days in a row. I couldn’t walk and could hardly stand up on my own. I felt so weak nad my arms felt weird, like I had a band around them tightening. My Mom had to take me. I felt like my legs were full of lead. I had this Dr twice. She said to me: Stop being a baby, go home a drink a Pedialyte and she handed my a Pedialyte and walked out of the room. The next day when I saw the same Dr she told my mom to get me Gatorade. I was just dehydrated.

I started to see a general practioner in 2005. I was telling her all of my symptoms. She ordered some blood tests and diagnosed me with an ulcer. Even though she never did any tests to prove that. The blood tests came back that I was anemic. So she started treating me for that. Every month I’d get another blood test but I’d still be anemic. IT was getting a little worse each time. She asked me if I’d even been tested for lyme. I said I didn’t know. So she ordered the blood test. A week later her nurse called me and said congratulations, you have Lyme Disease. There’s a small chance you won’t get better.She told me there was a prescription of Doxy waiting for me at Walgreens. I was so scared to take pills at this point because of all the crazy meds Drs had put me on in the past. But I was excited at the same time because for the first time in 15 years I had a diagnosis, I wasn’t crazy! Little did I know, this was just the beginning.

After a couple days on Doxy I started twitching. I couldn’t do anything it was so embarrassing. At work I wore a trench coat to hide it from my co-workers. I called my Dr and after a day her nurse called me back and said try Benadryl. Nothing would help with the twitching. I could tell when I’d call my Dr with questions that this Dr and her nurses didn’t really understand anything about lyme or any of the symptoms I was having. I felt so scared and lost.

Someone referrered me to a new Dr in town that had treated some people with Lyme Disease. Big mistake. This guy turned out to be a partner of the original Dr who diagnosed me. She eventually refused to see me for getting a second opinion, and he treated me so badly. He sent me to a neurologist and an ID Dr. But first handed me a card to a Psychiatrist and patted me on the head and said, you have too much going on, I’m going on vacation for three weeks. I couldn’t believe it. Well the neurologist he sent me to, said to me right off the bat you don’t have lyme why do you think you do. I told him that my general practioner did a test and she said it came back positive. And since I was in the middle of moving I didn’t have my computer hooked up. So my Mom had bought a book for me and when my neurologist saw it, he said I was just manifesting symptoms from reading about it. He wouldn’t listen that I didn’t’ know anything about lyme yet. I told him I had a positive test, so he walked out of the room but still in ear shot and he called the other dr. and yelled at her right in front of me, my sister, and my mom for diagnosing me with Lyme Disease. He then came back in and told me my test was equivocal and she wasn’t sure so she called the Infectious Disease Dr that he was about to refer me to. The ID Dr told her to go ahead and treat for lyme. So she was just guessing that it might be lyme.

At this time I was completely unaware of the debates over lyme and lyme tests accuracy. So I could not understand how a Dr could call you and tell you you have a disease that you don’t. I was so confused and felt let down. It was the first time in fifteen years that I had a disease the made sense. That could explain everything! Now they’re saying it wasn’t lyme? Why would they even test me with something that didn’t say for sure one way or the other? When I got a copy of my first lyme tests, my Elisa was positive, it was 1.19. On my Western Blot the IGG had bands 41 & 58 positive and the IGM had band 23 positive.

This neurologist sent me to an Infectious Disease Dr. The ID Dr he sent me to just said I that I didn’t have lyme or else I would have been better. He said I had weird symptoms for even lyme disease, and redid the Western Blot and said it came back negative. Even though I tried to get copies of that test, they won’t send me that copy of that Western Blot. I was told to go see him again, and he asked me why I was there, what I wanted him to do? He sent me to a cardiologist.
The cardiologist sent me off to do a tilt table test. Which was negative. I didn’t faint and nothing happened. He said he wanted to put me on medicine that would stabilize my blood pressure but I was worried about that. Really this is part of my problem with my fear of meds. He also ordered many heart tests like an ultrasound and holter monitor. He told me some events the monitor caught like my heart rate going up suddenly or my blood pressure dropping. But he didn’t seem to concerned about any of it. Later my regular physician told me that him and my neurologist think I have vasovagal syncope.

Eventually after doing research when I got my computer hooked up I found an LLMD.I started on a combination of Zithromycin, Omnidef, and Flagyl. I was put on about 25 different supplements and a seasalt/vit c protocal. Antibiotics helped me to get back on my feet for a little while. But I was havng a hard time once I added Flagyl. I did okay for awhile and was going back to work. But I think it was a bad liver test that made my LLMD pull me off of antibiotics and start a detox program. So I took Cholestramine for three weeks. But then I slid downhill again. Over the last four years since then, I have been on many antibiotics. I was never put on a picc line or port. I don’t know why. I think the Lyme Doctors are trying to stay under the radar here, because Wisconsin will investigate Drs who are treating chronic lyme patients with long term antibiotics. I’m still sick everyday. My memory is shot. I have no problem solving skills. I’m shaky and faint feeling. Mornings suck! I can hardly stand up. My jaw pops when I try to open it, and my shoulder’s hurt. I have restless leg syndrome which makes it impossible to sleep. I have also been diagnosed with three bulging discs in my neck and an EMG test showed damage to my muscle and nerves in my neck and arm. I am now on SSDI. This disease took away my whole life as it was. None of my kids have known me as a healthy normal Mom. I missed so much because of this disease. I have been desperate and tried treatments I would have thought only a crazy person would even try. I have tried using a rife machine for a year, I have done classes to retrain your immune system over the phone, tons of supplements, I have self treated with antibiotics when insurance won’t pay. It is so scary and I feel so desperate. Lately I just feel like I’m just meant to be sick. I will never get better. Maybe my job here in life is not to get better myself, but to educate others so they don’t get this sick. So that’s what I do.

I think the bacteria load in me is just so huge or I might have a hard time detoxing, that I just can‘t handle the lyme treatments. I don’t know. But I keep plugging away trying different treatments and supplements. It just bothers me that if a doctor would of caught this originally and treated for lyme it wouldn’t be chronic. Because I fear I might not get better I have dedicated all my time to lyme awareness. I have LDA brochures in my front yard for people to take. And a face book site for all my lyme friends to post questions and experiences. I just want to make sure others don’t have to suffer like this.

My kids seem to be okay. They do have symptoms here or there but I’m scared treating would stir up more symptoms. I’m hoping that rounds of antibiotics that they were put on when they had the seizures may have halted lyme. But my daughter did have a tick with a bull’s eye rash a few years back. Thank God the Dr did treat her with antibiotics even though he called it a spider bite. I just hope it was enough. They all have some symptoms but they may or may not even be lyme related. My husband is now also sick. Lyme? I don’t know. His knees hurt, his back hurt, he had a seizure for no reason. He suffers from depression. So it’s hard to tell. Every Dr I ask has a different answer if Lyme Disease is contagious from human to human.

Nobody can understand what people with lyme go through. Every day I wake up and my first thought is, “no, not this again, I can’t do it.” Am I ever going to get my life back? I’m scared of any new meds. It seems like I can’t stay on antibiotics anymore for more than a week without becoming so sick that I can’t handle it. And since there is no accurate tests at all, I still have the fear that it may be something other then Lyme. I don’t know what to do anymore. It has been four years of treatment, but sporadic treatment as I can’t afford the Dr appointments, or am too sick to even make it there. I won’t even go to a regular Dr or hospital anymore. I have been treated so badly. I have gone thorugh many nights thinking I might be having a stroke or a heart attack, I still won’t go.

But on the positive side, lyme has helped me to remember what’s important. My kids and  my dogs that never leave my side!! Especially when I’m sick! I love all my lyme friends that I have met. I try to post postive stories on my site so that I can help remind myself and others that it is possible to get better. People have been way worse then me and are now living functional lives. And I guess that’s all I want now, is to be functional again.