Lisa Hilton

Lisa Hilton

Lisa HiltonHere’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, but at the same time the one thing that has always had me holding on to get better. 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 running to 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 started 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 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.

wbSomeone 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 practitioner 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.

elisaAt 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.

The meds I would take in a day.

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

The night I had a stroke.
The night I had a stroke.
My dogs kept me company when I was stuck in bed for months after a mini stroke.

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.

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 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.

Update as of 3/30/2014:

I haven’t really treated for about three years ago now. Honestly, i feel wayyy better not on

Using a Douglas Coil Machine that my friend Jim let me borrow.
Using a Douglas Coil Machine that my friend Jim let me borrow.

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.

Update: 3/8/2015

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 615160_10204406964448430_4122824463071834778_oback. 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.

WTF Lyme?

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

Component Results

Life in 2017

Pain. Pain has become my life. People say don’t become your disease. But pain begs to be heard. It cannot be ignored. A mild headache can be ignored, a cut on your hand can be ignored. Sore muscles from jogging too long can be ignored. Lyme and EDS pain, cannot be ignored.

And if one more person tells me to “think positive” I may end up in prison for my reaction. Seriously guys, stop blaming the victims with your mentality that we are somehow causing our own illness. I was so happy with my life, at the time I got sick. I did not become sick because of some emotional trauma that was going unresolved, I did not get sick because things were unbalanced in my life. I had a wonderful husband and kids, house and everything was just fine.

Do you notice that people don’t tell you to think positive when you have strep throat? No, they give you meds and send you on your way. Why with Lyme do they tend to blame the person? I suspect with any chronic illness, that people can’t just cure quickly they probably do this. It’s like, we don’t have answers for this so we will blame you and your actions and your thoughts. So while you lay there in bed, watching life go by for everyone else, make sure you are thinking happy thoughts and saying affirmations that are just lies.

I tend to face reality. The reality is, I’m sick. Im sick with a disease that the government created to make people chronically or terminally ill. It is not the fault of people who contract this disease that we remain ill. So please don’t tell me to think happy thoughts, to look in the mirror and tell myself I am “whole and healthy” when I am not. If matter followed energy then I would of not gotten sick in the first place.  I would of remained healthy like I was one day.

One day healthy then the next, not. For over 20 years now, not. I know we are spiritual beings in a physical body for now. I believe that. But for whatever reason the universe wanted to let us have this physical experience which means we will experience physical things like illness. Im sure there is a spiritual meaning for it, and I hope we understand and know what that is one day. Maybe earth is like high school for the soul. I don’t know the answers. What I do know is if one more person tells me to, “think positive” I might have a nervous breakdown as I lay here in bed, with two dry sockets, bilateral frozen shoulder, back pain from hell, head pressure, blurry eyes, nearly toothless and not being able to get up and play with my grandkids. Not being able to walk outside for more then a minute. Watching life go by without being active in it.

I have become a spectator instead of a participator..

So anyways, back to the update. In the last couple years I have been on Vit D, B 12, tons of probiotics, garlic, aloe vera, essential oils, turmeric, oil of oregano, cannabis oil, magnesium, using the infrared sauna, biomat, light machine, bee venom, chiropractor, accupuncture and gua sha. I know Im forgetting stuff.

Nothing is helping.

This last year has been rough and honestly Im ready to go. Im not suicidal. Just ready to go when God is ready to take me.

I was given Clindymyacin by an urgent care dr for a sinus infection (dont even know if it was really a sinus infection.) I had been sitting at my cousin’s wedding when I got a shock like feeling in my head and felt all dizzy and vertigo like. After that I could not get rid of the sensation that  the room was moving around me for a week. The doctor gave me steroids, Clindymacin, and another drug for dizziness, Metclizine and zofran. OMG that drug, Metclizine made me sicker. All of them did.

I ended up with C diff, twice.. Afterwards I learned that Clindamycin is known for giving people C Diff. Took two rounds of flagyl that made me feel like I was poisoned. Finally I turned to oil or oregano, aloe vera, garlic and probiotics along with a diet of rice, kefir and Kimchi. I finally test negative now but shortly after I got infected with another rare bacteria called, “Yersinia.” My intestines have never been the same. Its like just having intestinal cramps and bloating every day now, especially at night for some reason. I also get this sensation under my right ribs that my gallbladder or something is too big and pushing out on my ribs. So uncomfortable.

My back problems continue and I also now have frozen shoulder in my left shoulder. My right shoulder never healed from an injury I got two years ago so I have pain in my both shoulders. My left one is brutal. I can’t sleep, I can’t use my arm, the pain goes from my shoulder to my neck and down my back in back of my shoulder blade. I’m scared to move and in every movement I make now. Trying to shower, get dressed, brush my hair, is impossible little less actually holding my grandkids without total pain.

I just dont know what to do anymore. And I am scared for everyone. Each day I get on my Facebook and talk to moms, who have kids going through this, while they are trying to take care of them sick too. All these young kids, and teens and twenty somethings… they are all sick and hopeless and killing themselves. Mainstream doctors don’t get it. Mine is useless. And the doctors who do, are simply too expensive or too far away for the average Lyme patient to get to. This is happening around the world, in every country and yet is still so ignored. I don’t get it.

What is happening in this world? Why is this still being ignored? I refuse to be positive about this, this situation is shitty and it’s time for people to know the truth about Lyme disease or whatever the hell this is we all have. Some of us die physically, others of us just die mentally, emotionally and stay alive, but we don’t live. We are alive but not living. Just laying in bed day after day feeling like a burden for those who have to take care of us. What is the point? I miss living.

September 11, 2017

Plagued by pain. Muscle spasms, everywhere. I have frozen shoulder. An MRI showed I have tendonitis and bursitis in my shoulder. I have proctalgia fugax (rectal spasms), back spasms, all over my back. My whole life revolveds around these spasms. Pain meds me sick as do any kind of sedating meds, so i just have to deal with it. Im tired. All the things people say help such as CBDL, turmeric and so many things I am taking don’t seem to be doing anything. Oh my God, what is the answer for everyone suffering from Lyme. What is the answer? I’m so tired.

18 thoughts on “Lisa Hilton”

  1. Your story is heartbreaking. I am so sorry that you have gone through so much pain. I too have battled this disease for 20 years, and the pain both physically and financially can be brutally overwhelming. I know that you probably get suggestions all the time, and if you are anything like me, wish that people would stop giving them because it’s never that simple. But just in case, I want to share a couple that have meant the world to me.

    Three years ago, I suddenly began to lose all my teeth at the age of 24. Every single one had cavities, and they were deteriorating at a rate of which was terrifying. I kept calling my dentist to ask how I could slow it, of course they all just said I would be fine until my next appointment. It wasn’t until they saw me that they realized that I MEANT it when I said things were going fast. They told me nothing could be done about it…whatever was going to happen with them would happen. I got a bit upset, and decided, “I don’t think so…I’m the one who is going to have to live with dentures at 24.” So I researched…and researched…

    It turns out, the little brats can hide in the pockets between the tooth and the gum, and from there, not only destroy the teeth, but cause all manner of chaos including heart attacks, strokes, and countless other conditions. The dentists who did this research (Drs. Dax and Douglas Martin) recommended three possible treatments to kill the oral spirochetes, and the one I chose was the Dental Herb Tooth and Gums system. It is pricey, but I can honestly tell you…after starting to use it full scale…the deterioration stopped in its tracks. After using it several years, my mouth is one of the healthiest they have ever seen…..and if I stop using it, I feel worse, and get so much pain in my mouth.

    Also, I recently started using ozone therapy. I genetically have a problem detoxing, so my response to any new treatment is often violent and terrifying at times. It has kept me from using so many medications…but my new doctor got me to purchase an ozone generator, and I am on a very low dose, where I drink a small amount of medical ozone grade water (other methods too extreme for me until my body gets stronger). Honestly, I herx far less from this than anything else. And after using it for a while, I have gone from plastered to the couch 24/7, hardly able to walk alone, to being able to walk around outside for AN HOUR…and the treatment is a cheap one time purchase of a generator. It isn’t the full answer by any means, but it has given me so much more strength to be able to get even a touch of functionality back.

    If you are at all interested, I would love to be in touch with you. My mother gave me the gift of being a bull dog, so I have the “gift?” of taking what doctors say can’t be done and turning it into a dare. I have been fired by several doctors because my body was too complicated, and wouldn’t co-operate with their plan for treatment. So I have had to fight much of this through on my own…I would love to share what little I know about living through impossibilities.

    The last thought I wanted to leave you with is one of my best friends since starting treatment. I know each person is different, and this may not work for you, but the one night, I was in so much pain, that I couldn’t handle it another moment. I had some essential oils I had bought to make my own deodorants, etc (allergic to all things commercial now, thanks to Lyme), and that night, I didn’t care what I tried. I looked online in desperation for essential oils that killed pain, and started pouring. God was gracious to me…somehow, it worked, and I have been using the following blend ever since. It lowers my pain level by at least 20-35%. I mix a 2% dilution of Sweet Orange Oil, Allspice Leaf Oil, and Lavender Essential oil into a carrier oil, then massage. My friend in a similar boat uses Peppermint. I hope it helps! I will be praying for you tonight. God bless you! And may tomorrow be a better day than this one is 🙂

    1. Thank you Beth. it is very sweet of you to share your experiences of what worked with me. Sadly I have lost almost all my teeth now. I am still recovering from the last three that got pulled. I have 12 left, only my front ones, no molars and I have cavities in the front ones that im not sure how they will fill as I cant get numb. Im sorry you suffered the dental stuff too, expensive, painful and embarrassing right? Im glad that method is helping you and I will check it out for my remaining teeth.

      I have tried the ozone water too but not consistently which im sure would help more. I will look more into that too, Thanks for reminding me about this. I used to have a chiropractor who had a machine and id go get a gallon here and there. But i have I will look into a machine and see if its something i can afford.

      I do love essential oils too. We use them on me, my granddaughter and my whole family uses them. Im glad they help your friend <3

      Im like you too with all the severe reactions to everything. It makes it really hard. Doctors get tired of it and Im just scared to try anything new at this point.

      I think at this point, Im just ready to go. I feel like I have tried so much, spent so much money on things that dont work and now Im just ready to go when God is ready to take me. The pain has become unbearable. Im not suicidal but I wont fight it when the time comes.

      1. I know what you mean! I have been there so many times…and even though it is hard, I think in some ways it’s a strange sort of gift to be able to recognize that this world isn’t forever, and be able to look at it straight on, so we can live wisely and prepare for it. Life means so much more when we can’t take it for granted.

        It is so brutal that the dental work is so painful for you. I had fillings one after another when it was all going down and one of my teeth wouldn’t get numb either-that was a terrible experience that I would never wish on anyone!

        At one point I had to get ozone from a wellness spa when my machine was down, but it wasn’t nearly as strong as from the machine and I went backwards before long. The place I got my machine from is called ForeverOzone (an online retailer)…I’m not sure how their stuff compares to the other products on the market but it was only $125 for a set, as opposed to over a thousand from a supplier in BC. I tend to go with whatever gives my wallet the smallest ulcer, hahaha.

        I shared your story with my mother, and she would really like to donate one for you, if you would be willing. I don’t know the rules of the site, so I hope I am not violating anything in asking, but if you have your own site that you fundraise from I could maybe go there to see what we could figure out? Only if you are up to it and would be comfortable with that…I completely understand if not 🙂

  2. Thank you for sharing, dealing with Lyme in Wisconsin also. I am lucky to have a good LLMD and an understanding employer. Your story is so similar to many I have heard, here is hoping for change in our medical community and insurance.

  3. Lisa,

    Please continue to try treatments to get your life back. I believe that while everyone’s immune system and therefore response to Lyme is different, everyone responds differently to different treatments. My wife has gone through many years of things similar to you but has most recent ly had some success with Ozone treatments with her LLMD, who has been trained for this treatment. Do some reading, but Ozone certainly kills the little buggers and is not as harsh on the body as antibiotics. In fact, it can be made by the bodies own immune system to aid in killing foreign invaders. These Ozone treatments have been both injections directly into problematic painful joints as well as injection into her own blood for an “overall” benefit. This treatment (along with some others that you’ve mentioned – herbal, western, etc…) has certainly helped her. She is much more the expert than I, but please contact me if you’d like her info. to find out more. My thoughts are with you and everyone else having to deal with this horrible disease and best of luck with the “Ride”!

  4. Dearest Lisa, your story is a wild ride to hell and surfacing up for a breath of air here and there! Damn, you are one brave lady! I applaud you for being as persistent as those stealth pathogens! You are fighting tooth and nail and not ever gonna “go gentle” into that evil spirochete-engineered abyss! Your spirit is to me like bright white light with a prism of glimmering rainbows in the middle.
    I pray you get a ticket out of this crazy complex of infections and their fallout. Of course, I pray that for all of us out here…for we are a large city or bigger of afflicted!
    But you have put in pounds of flesh helping others and we know it. Thank you for all you have done!!
    Through this unique hell…I have met some of the best people! You certainly are one of the gems!
    I adore sick people….they don’t waste time with foolish vanities.
    Time becomes too precious.
    Much love to you!
    I want to celebrate and dance on the day a TRUE CURE is found! I pray so much to hug you in person on such a day!
    Your friend and Lyme Warrior Sister….

    1. Aww that was so sweet Bonnie!! You are a gem yoruself! I adore you and so happy that this disease has brought together such amazing people to fight through this battle together. It has showed me some really wonderful souls who I might not have met otherwise. .Hugs to you and I too pray that we find a way out of this madness! xoxoxo

  5. Lisa Hilton you are one strong amazing person. The fact that you could document so much of your story is just awe inspiring. Your story captures so much of how dismissive many aspect of the health care system is. I too am a Mom and one of the hardest things to do is to be sick and take care of sick children symultaneously. I really don’t know how you pulled through so many of your events. Thank you for sharing your history. I wish the best for you and all those you love.

    1. Thank you for your sweet words Julieanne. I hope that you are hanging in there too, and your kids are getting better too. xoxo

  6. Hi Lisa – I hope you don’t mind a few questions. I haven’t personally come across any other Lyme sufferers with blood clot issues and I noticed in your recent update that you mentioned you had a stroke. Any idea what caused your stroke? Were you on antibiotics at the time? I ask because I suffered a pulmonary embolism 7 months after contracting Lyme so perhaps I can learn something from your experience. Last question: after 3 years without treatment, are you able to work?

    1. Hi Shari, sorry I just saw this now. I really never got any answers on waht caused the stroke. i guess theres no way for them to really know. Im sorry you have gone through a similar experience.

      No I cant work. I am on disabiltiy now. I worked sick for fifteen years then when the residents I was taking care of started calling 911 for me, I knew it was time to apply for disability. I have been sick for over 20 years. I know this is not going away for me. When I stopped treatment it wasn’t because I was cured, it was only because after six years, I had tried what there was to try and it all just made me feel worse. So I opted for being functional and not taking all the meds.

  7. Lisa- your comment sounded so familiar, never give up though. I will pray for you that you find a GREAT
    LLMD that will treat you and help you feel better.

  8. I am so glad I met you – although I don’t know you well- we have so much in common, your story isn’t far from mine with all the ER visits & Dr visits and misdiagnosis!! You’re a strong person & I pray we all get better some day!!!
    Hugs from Ohio <3

  9. Lisa,
    You are an incredible person and your story is incredible as well. You have such a positive effect on so many people’s lives and I’m happy to call you my friend.

    1. Thank you Pete, I appreciate all your support. Im happy to call you my friend as well. Thanks for stoppin by 🙂

  10. I Love You Lisa Hilton!
    I am so sorry that you have suffered so terribly all of these years!
    I get so angry thinking of the ignorance running rampant in the US medical field.
    I feel great pity for all of the people that think the MD’s are always correct!
    You have been a true inspiration for me! I continue to believe that one day, while we are on this planet, we will be well enough to meet at the beach and enjoy a day of sun, sand, water and all fun things that come our way!
    Thank You Lisa for helping me, and for helping everyone that suffers with these awful diseases!
    your friend in Alabama 🙂

    1. Thank you Lynne! One day we will be healthy together, holding up a glass of champagne to that thought! I appreciate your support. Thank you friend. <3 Ya!

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