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 diagnosis’s 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.
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.
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?
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 and 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 too 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 and 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 practitioner 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 referred 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 having 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 had a stroke the night of Christmas. A mini stroke, they called it a TIA at the ER. That made me bedridden for 5 months. I will never forget this time in my life. I don’t know if the stroke was Lyme related or not. All I know is if there was ever a time in life I wanted to die, this was it. I had such severe pain every time I tried to sit up, run from my chest around my heart up through my neck. It was like something was pulling a nerve or muscle tight. It was a long five months being in bed.
After months of doctors not listening to my symptoms and physcial therapy not helping and
not being able to get there as often as I should (my doctor refused to order in-home therapy, I just started to think I had to find a way to get better myself. I started reading some spiritual books from Deepak Chopra, Wayne Dyer and Carolyn Myss and started trying to mediate, and take small steps each day. Tried sitting for five minutes at a time, then standing next to the bed. I had some nasty atrophying going on in my legs, Ill never forget standing up and trying to walk to the closet to change my pajamas by myself and my thigh muscle in one of my legs just cramped up into a ball and wouldn’t release. I was losing all strength. So I just kept working on a couple minutes a day until one day I made it outside. I laid in the grass for an hour.
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.
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.
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 positive 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.
I haven’t really treated for about three years ago now. Honestly, i feel wayyy better not on
treatment . But I have come to this weird level of acceptance.. Not giving up or in..just accepting that where I am in the moment is where I am. Like if i have a hard day..I hate it..but I just rest for that day. If I have a better then baseline day..I go for it..go do stuff..get out, do what i can even if i pay the price for it later.
After six years of Lyme treatment and one stroke later…I learned that life is short and you dont know what is going to happen, on treatment or off.. So I just take each day, thank God for it, and then live it.
The ONE thing i have found that helps me is juicing. It does not cure me, it does not get rid of all my symptoms.. But what it does do is replace all the vit and minerals that being chronically ill must suck up. Because when I juice, i get this big boost of energy, and i can shower, dress, go out to Walmart.. as compared to my previous ten years of being bedridden. I have been sick since 1991 and I have tried lots of strange treatments. all the typical Lyme treatment everyone talks about and I came to the conclusions, some just hurt us more, some help a little and some dont do anything but drains our wallets.
So I thought about what I wanted out of life. and at my age.. just to be functional enough to survive and shower and be able to do daily activities like cook … were what was important to me. Now other people are at different stages in their lives so some might push harder them me on treatment.. which i totally understand and we all react differently to different treatments. So im not at all saying anyone should do what Im doing and not treat..but im just saying everyone is different. There is no cure as of yet.. and there are a whole lot of treatments to go through to see what might help.
This was just my conclusion after a lifetime of beings sick. I have to learn to live with what I have the best way that I can.
From time to time I come here and update my story. As all of us with chronic Lyme know, our stories are journeys. There is not one short story that can sum up what we go through with Lyme and the road has many twists and turns.
So what is happening now for me:
For some reason over the last year, I got really sick. I mean, of course as you can see above in my story I have been really sick for a long time. But I always had ups and down. I usually would have a couple good hours in a day or have a couple “functional” days during the week. I could travel a bit, making it to Lyme protests or out east to visit my “Lyme” friends that I have made. It was NEVER easy but I could do it.
This year is different. I had to cancel plans to the last Lyme protest in Philadelphia. I cancelled all plans to go along with Paul when he goes to visit his family in Florida or Connecticut. In fact, over the past year I have slowly started getting back to home bound, and a big portion of my day spent in bed again.
Between back pain, dizziness and just being so chronically fatigued I cannot function at all, I feel like I am back to where I started and worse. It is very frustrating.
My whole life since getting Lyme has always focused on activism. I have always wanted to help whomever I could, or somehow try to make the world see “we” (the Lyme community) exists. That we are suffering. Between organizing protests, Lyme walks, support groups, online and in person meetings and letter writing campaigns. I just felt that deep inside like something has to change and soon. I can’t watch another person lose their life, I can’t listen to anymore suffering, I can’t hear another doctor utter the words, “There is no Lyme Disease here.”
This is the first time in ten years since being diagnosed, that I have had to drop out of all of that.
I think I have run the course in treating “Lyme Disease” in any traditional routes. I have done the long term antibiotics, the rife machines, the herbal protocols. I have done many things that I don’t even want to admit trying to find the path to wellness again. At this point I have found a couple things that at least help stay “functional” enough to make it worth being alive. Things like juicing that gives energy, acupuncture which can sway the pain in my back, if even for a couple hours and some other alternative techniques that I am trying. But these things are expensive and I can’t afford to stay consistent with any of it.
The other thing that Lyme has seemed to affect is my teeth. I am in chronic dental pain. I have lost all molars now and just have my front teeth remaining. It is embarrassing to smile. One of my weird symptoms I have is not being able to get numb at the dentist. I don’t have a tooth in my head that doesn’t need work. It hurts to eat, it hurts to even breath in on a cold day. But I can’t get anything done due to not being able to get numb. I have been put under anesthesia twice it the last year to get teeth extracted after attempts at pulling them while I was conscious didn’t work. (Ouch!) So now I know I need to just go under again and get them all out and get dentures.
And as bad as the dental pain is, it is nothing compared to what I’m going through with my back. I seriously can’t handle the back pain. Yet, I have to because I can’t take pain killers or muscle relaxers because of adverse reactions to these meds. So I lay here, day in and day out. I have an adorable little grand baby that all I want to do is hold her. I can for about 1 minute. Then my back instantly goes into spasms. I saw an EDS dr last week and he told me I shouldn’t be holding anything over 10lbs. So we are trying to make it so I only hold her when sitting now.
And then there’s the dizziness that never goes away. When I say dizziness it is like different levels of it. Sometimes vertigo, sometimes a feeling like I am rocking on a boat and all the time lightheartedness. I have head pressure all day and night. I feel like I can’t lift my head. Some days it’s getting harder and harder to read. I can’t think or remember anything.
I have been doing Cold Laser Light Treatments, chiro adjustments and acupuncture to try to control the pain. I take Turmeric, Fish Oil, electrically charged water, Vit C, Vit B12 daily. Praying something starts working soon. I can’t handle this back pain. It is the most debilitating symptom that I have had.
Here is my blog on my personal journey through Lyme, treatments, activism and learning to just accept that I may be sick forever.
Here are my MRI results. ER doc told me my back was normal and I was just having muscle spasms. Still no referral to a back specialists but did refer to me to neurologist. The appt is Dec 3, 2015.
Lower Back MRI Sept, 2015
Comments from the Doctor’s Office Mild multilevel spondylosis mild sliding forward of vertabra . Scattered regions of small disc herniation. Lots of arthritis. No significant central canal (spinal stenosis) or neural foraminal narrowing (pinched nerves).
Narrative MRI LUMBAR WO CONTRAST, 8/31/2015 12:11 PM, Southwest Health Center
INDICATION: 724.2: Lumbago
ADDITIONAL CLINICAL INFORMATION: Ordering Provider Reason for Exam: Technologist Note: concern for acute herniated disc vs epidural hematoma (history of Ehlers Danlos syndrome). Mid to low back pain. Bilateral leg numbness and weakness. Difficulty ambulating. No prev back surgery Additional: None
COMPARISON: None available at the time of dictation.
TECHNIQUE: MRI of the lumbar spine was performed utilizing multiple pulse sequences in multiple planes without contrast.
FINDINGS: There is normal lumbar lordosis. There is trace retrolisthesis of L4 on L5. Vertebral bodies are normal in height and morphology. No suspicious marrow signal changes are seen.
There is disc desiccation throughout the lumbar spine.
The conus medullaris is at the T12-L1 level and is normal in signal and morphology. There is no evidence for epidural hematoma or fluid collection.
Level by level assessment: At L1-2 there is mild disc bulge and facet hypertrophy. There is no central canal or neural foraminal narrowing.
At L2-3 there is no significant disc bulge. There is mild facet hypertrophy. There is no central canal or neural foraminal narrowing.
At L3-4 there is disc bulge and small central disc herniation protrusion type. There is small annular tear. There is mild facet hypertrophy. There is no central canal or neural foraminal narrowing.
L4-5 there is disc bulge with superimposed central disc herniation with small extrusion component. There is bilateral facet hypertrophy and infolding of ligamentum flavum. There is mild lateral recess narrowing. There is no central canal or neural foraminal narrowing.
At L5-S1 there is disc bulge with superimposed small central disc herniation with small extrusion component. Disc minimally impinges on traversing S1 nerves bilaterally right side greater than left. There is no central canal or neural foraminal narrowing.
Impression IMPRESSION: No evidence for epidural hemorrhage or fluid collection.
Mild multilevel spondylosis. Scattered regions of disc herniation. No significant central canal or neural foraminal narrowing.
Mild lateral recess narrowing at L4-5 at L5-S1.
Reading Radiologist – Dolin, Ronald Releasing Radiologist – Dolin, Ronald Dictation Date Time – 08/31/2015 13:09 Transcriptionist – NA