Lyme Disease Awareness- Let’s TICK this off!

Campaign Story

My name is Amanda Jessop. I was diagnosed around 2016/2017. But the events leading up to my diagnosis were EXTREMELY Traumatic, and unfortunately my story is very common among other people with Lyme Disease.

I first want to thank you for taking the time to read my story, regardless of whether or not you decide to donate. Reading this will allow you to become aware of the signs and symptoms, and who knows, maybe you will end up helping somebody. I always tell people, if someone starts having mystery symptoms, and hundreds of tests have been run with nothing coming back, LYME and MOLD toxicity should be tested for.

There were so many times when my Lyme Disease could have been easily diagnosed, but with the misinformation and lack of awareness of the disease, regular Doctors don’t  test for it often.

It started in about 2015 when we were living in Savannah, GA. I started having very weird mystery symptoms. Joint Pain, Dizziness, Heart Palpitations, insomnia, intrusive thoughts, SEVERE anxiety, numbness, tingling, panic attacks, auditory hallucinations, and many more. I started by going to a ‘functional DR’ in jacksonville. This was my first experience with the functional medicine world. Unfortunately this one was more about making money off me. He ran a viral panel on me, which came back with chronic epstein barr. I remember him telling me, “If we get a lot of positives back on this viral panel, then I will want to do an additional infectious Disease panel (includes Lyme). But he never did, and never recommended it. And I knew nothing about Lyme then to ask for it.

Then I decided to go to the MAYO CLINIC in Jacksonville, FL. YES the MAYO CLINIC. I can’t tell you how many tests they ran, I mean TONS. I had a colonoscopy there, a sonogram of my uteris, (which came back with polyps, which are easily linked to Lyme), and a sleep study.   I basically was diagnosed with IBS, Fibromyalgia, the less severe form of Bi-polar. That’s it. and NO lyme tests were done. And they say the MAYO CLINICS are the best of the best.

Right before we moved back Houston in 2017, I started to feel even more sick. Much more stomach issues and symptom’s came about. I remember waking up one morning feeling so anxious, I couldn’t even sit still. It felt manic in some nature. I was in pain, I was using the bathroom a million times of day, sweating, and my anxiety about the symptoms just pushed me over the edge.

Once we were in Houston, we were starting to believe that maybe all my mystery symptoms were due to me weaning off some of my anxiety meds (including Clonazepam, which is hard to get off of, and has horrible withdrawal effects). Some days I couldn’t get out of bed. I was loosing weight. I could barely walk without being out of breath. I finally got to a point where I didn’t feel comfortable being by myself at home. I hired a caregiver to be with me during the day. I was just barely hanging on, the emotional torture was killing me. Finally I told my husband I wanted to go to the hospital to get checked out. So we went to the ER and Houston Methodist. I dont know what they test for in there, but everything came back normal. but i knew in my head and heart this was NOT normal. Family members started to believe that I was going through the same thing my father did. He was diagnosed with Bi-Polar depression (which it is very common for Lyme Patients to be diagnosed with mental disorders, due to the inflammation in the brain from the lyme bacteria), and had every single symptom I had. He committed suicide around 2009. (to this day I wonder if he too had Lyme Disease. Lyme can be passed down through the placenta so you can get it from a mother or father).

I was at the hospital and 2 nurses came to talk to me and my husband. They were nurses from the inpatient psychiatric unit at Houston Methodist. My husband didn’t know what else to do, and family members suggested I get admitted. So I voluntarily checked myself in to the psych unit.

What was about to happen then was something I was not prepared for. The Doctors started trying me on all sorts of medications. Each one giving me HORRIBLE and SCARY side effects. One drug even made it to where I was so dizzy and tired I couldn’t even speak or walk. Nothing was really working well without side effects ( which makes sense now because the root problem was not a neurotransmitter problem, it was an infection problem). I was in there for 2 weeks. Left feeling a little better, but still having mystery symptoms. The DR’s told me it was probably due to the withdrawals of my drugs. Those drugs which I spent over a year to get off of, and now being put back on them and then some.

I would end up going back to the psych unit 2 more times. I didn’t feel safe by myself, I felt like any minute I might do something horrible. I didn’t trust my head. There were horrible incidences of REALLY sick people in there, screaming, being violent. I remember my first night I was in the room with an older lady. The nurses came in in the middle of the night and needed to give her medicine. She didn’t want to take it, and she was screaming so loud all night. I tried to use my pillow to lower the noise. No sleep. To this day, and I have PTSD from all these experiences. I ended up going into the GI dr, and we found out that I had salmonella and an amoeba parasite. This was the reason for my stomach issues right before we moved from savannah to houston, and my DR now thinks that these infections set off my Lyme into motion. You see, you never get rid of Lyme, it can go into remission per say. But you still will have to deal with the side effects the rest of your life.

My new symptom of sensitivity to smells and chemicals came on. In 2017 my husband found a Dr. in Houston who specialized in people with chemical sensitivities. So we went. She told me she was running multiple tests, one being Lyme. I said, “Lyme, what the hell is that?” 2 weeks later we went back and sat in her office. I remember this day like it was yesterday. “Well, we pulled some tests, and it looks like you tested positive for Lyme Disease.” I was scared and relieved all at the same time. First started all the antibiotics (which only 20% of patients respond to), I mean over 6 months worth. AND they even put a pic line in me for IV antibiotics. It made me SOO sick. I finally said ENOUGH. No more antibiotics (knowing now how bad they are for your immune system, I wouldnt have gone that route initially. The amount of antibiotics used PLUS the amount I used in my 20’s, where I was getting a sinus infection every 2 weeks, KILLED my immune system.) This Dr. then recommended me to a functional DR in Houston so we went. You can treat Lyme naturally with herbs and supplements.

Since LABcorps lyme tests are very iffy and can give false negatives and false positives, this DR wanted to do a lyme test out of a private lab to just make sure. It came back positive of course, but this time he explained to me that I had several co-infections. See when you have LYME, you don’t just get LYME. There are a whole handful of other infections that usually go along with it. I had the co-infections called Babesia and Bartonella. Each bacteria having their own type of ‘symptoms’ Bartonella is known as NEURO lyme, which would explain all the psych and cognitive systems I was having.

Well this Dr. gave me a stem cell injection about the time we moved to Amarillo in 2018. And IT ACTUALLY MADE ME FEEL ALMOST NORMAL. I was able to wean off some of the horrible meds they put me on when I was in the pysch unit. But you needed to get a stem cell injection every 3 months, and I planned on going back to Houston to get them. But then this Dr. Retired. and I couldnt find ANYONE who also gave stem cell injections for Lyme ( this is because the CDC, which is not advocate of the Lyme World, frowned upon the injections for Lyme. Who knows. They probably saw how well it was working for Lyme patients, and maybe Big Pharma got wind of this, and you know how that goes, POLITICS).

I then started having some new mystery symptoms. I noticed when I was using my laptop on my lap, that I was starting to get like anger fits, and dizziness, and I would have trouble with word recall and memory. One day I just decided to randomly google, ‘laptops and lyme disease’. and boy was I introduced to a whole new world of sensitives. EHS is Electrical Hypersensitivity Syndrome. It’s where your body is sensitive to anything electrical that emits EMFS (Electric Magnetic Fields). So I was becoming sensitive to WIFI, Phones, Laptops, Cars (engine), Microwaves, Cell phone towers, apple watches, TV’s, and the list goes on. I was getting heart palpitations, anxiety, nauseous, severe joint pain, CRAZY mood swings, etc.  Ends up that EHS is very common with Lyme Patients.

From there I ended up going to an expensive lyme clinic in Kansas, shelling out thousands of dollars. Only to leave with the notion that my lymbic system in my brain was messed up from my LYME, and that I needed to retrain it with a neural reprogramming tool called DNRS.

And yet I got worse. Suicide was contemplated almost daily. I couldn’t take having all of the symptoms anymore. I was miserable, I couldnt go anywhere because of my sensitivities, I really felt like there was no purpose for me to be living.

End of 2019, beginning of 2012, I came upon a Lyme Dr. in Colorado, that actually had Lyme Disease herself. She actually was the first one that took insurance ( which 95 percent of lyme drs. dont, because the CDC does not recognize Lyme Disease as a Chronic Condition, WHY? Who knows. Politics probably) It’s Shitty

My husband and I drove up for the first visit. And BOY do we learn a whole bunch of new information. She tested me for other infections and syndromes that typically go along with lyme. And I ended up testing positive for the following: Mold Toxicity and Mast Cell Activation Syndrome. When You have Lyme and your immune system sucks, even being exposed to a SMALL amount of mold can make you toxic. Most Lyme patients don’t detox well anyways ( I knew this too, in my 23 and me genetic Mutation Report). Mast Cell is a histamine issue. And actually my Dr. tells me now that my sytmpoms are not coming from the Lyme, but from the Mast Cell. Mast Cell was acquired because of the amount of histamine released in my body with all of the infections: Mold, Lyme, Epstein Barr, Gut Infections. Histamine effects EVERY ORGAN in the body, and so does LYME. So literally I can have any symptom A-Z. The scariest being suicidal ideation and intrusive thoughts, which I deal with today.

So after seeing my Colorado DR, she recommended a couple of things. We had an EMF consultant come from out of state to measure our house to see where the highest source of EMFs were, and the ways we could lower EMFs in the house. This to date, is my biggest sensitivity still. We slowly made some changes, we caged our wifi box, I started sleeping in the room that had lowest EMFS, etc. Then a mold expert came, and identified specific tiles in our bathroom where he believed mold was growing. We haven’t been able to knock the tiles down, because all of the quotes were INSANELY HIGH. So to this day, we still dont know. I could be living in our house and still being exposed. I bought a 1,000 mold and VOC air filter. (VOC’s are given off by new house things like, floors, paint, wood, etc) and actually when we moved into our house here in amarillo, with it being relatively new, I became sensitive to the VOCs as well.

I am still with the same Colorado DR to this day. She has helped me tremendously, by putting me and several supplements and meds that have helped my Mast Cell issues. Unfortunately this took almost a year to do, getting meds that helped my mast cell. My body has become so HYPERSENSITIVE, that taking new things can be a challenge. I react to a lot of things.  (did I mention I spend over $500 dollars a month on meds/supplements? This is very common in the Lyme World). Right now I still have the same ameoba parasite that I did years back, I have mold, and Lyme. I am FINALLY almost to a stabilized state, to where I can start treating the parasite. ( you have to get your body in a stabilized start before treatment, or it will just make you feel worse, it took a year for me). It’s known that you need to treat parasites first, then mold, then lyme.

I still cannot travel, I haven’t seen my family in over a year, friends as well. I have to eat SUPER strict, and eating out has become unsafe. Some days I feel good, and the next day I could feel HORRIBLE. I Still have a lot of the original symptoms, just not as much, and they can come and go. I HAVE however, been felling much better. And I contribute it to a couple of things; 1) we got rid of wifi in the house ENTIRELY, we use ethernet 2) I realized I wasnt getting quality sleep, and added some tools to where I am sleeping better. HECK- I FINALLY GOT BACK TO BE ABLE TO PERSONAL TRAIn! I couldn’t do it for several years due to all of my sensitivities. Taking care of myself is a high maintence job EVERY DAY. and in a way, I am one of the lucky ones. Lyme effects people differently. Some people are bed ridden with horrible pain, some can’t walk and use wheel chairs, some have seizures, and then some barely have any symptoms at all.

So currently  I still have the following conditions: Lyme Disease, Co-Infections Bartonella and Babesia, Chronic Epstein Barr, Parasite, Mold Toxicity, and Mast Cell Activation Syndrome. Sometimes I wonder how I even get out of bed with all of this toxicity. (I eat super strict, I use the sauna every day, I mediate twice a day, I do workout, I pray and deepen my relationship with god, I dont drink alcohol, etc).

They call it the INVISIBLE DISEASE, because most people look normal, but they are deathly ill. ALSO LYME DISEASE IS CALLED THE GREAT IMATATOR. The symptoms of Lyme ( especially the neuro symptoms), can mimic many other diseases: MS, Parkinsons, Alzheimers, LUPUS, Fibromyalgia, Bi-Polar, Schizophrenia, Depression, Anxiety, chronic fatigue syndrome, IBS, ALS, Tourettes syndrome, ADHD, OCD, Bell’s Palsy.

In Fact, if you google Lyme and _____ (enter one of the diseases it mimics), you will find COUNTLESS stories of people who were thought to have alzheimers, MS, Lupus, etc, but later found out it was Lyme Disease.

Donating will support lymedisease.org in bringing awareness and also supporting governmental efforts to fight for more research money ( Lyme is the fastest growing infectious disease in the US faster than HIV but only gets 1/4 of the research money that HIV does). Research money is needed to come up with more accurate testing, and better treatments. I want to thank you again for reading my story. and I hope you leave with more knowledge so that you TOO can possibly help someone out there who started out the way I did.

Last  note- I have struggled over the years, wondering why GOD has let this happen to me, wanting to at least know it was for a good reason. A couple of months ago I was using the sauna at my gym, and a girl started talking to me in there. Somehow the conversation ended  with me to telling her that I had Lyme Disease. and  she responded “So Do I.” God’s work right there. This friend is much younger than me, she had just got diagnosed, and did not know a lot about the disease. I took her under my wing immediately. She came to my house and for hours I gave her books, supplements, every ounce of knowledge she needed to beat this thing. But not just beat it, Beat it EARLY ON. You see, the longer you let the disease go untreated, the harder it is treat. I treated her with the thought in my mind, if only I HAD MET SOMEONE who had lyme when I first got diagnosed. Maybe then I could have been in remission sooner. AND THAT, helping just one person, is good enough for me.