Dr. Edwards-Hawver’s Journey With Lyme disease
What follows is my journey with Lyme disease. Let me start by saying that I have no memory of ever having a tick bite. I spend a lot of time outside but I never found a tick on my body, nor did I develop the traditional bulls-eye ring, which is believed to be the tell tale sign that you have been bitten by a tick. After researching this more thoroughly, only about 60 percent of people get the “so called tell tale ring” that indicates a tic bite. So when I look back, there was never a reason for me to believe that I was bitten by a tick or could possibly have contracted Lyme disease. And in all honesty, I never really even thought about tics even though I spent most of my life outdoors. I never knew anyone who had Lyme disease let alone any understanding of how much Lyme disease can destroy your life.
Like I said, I have spent my life outside. I played outside all the time as a child, I went hiking, mountain biking, and I was an avid gardener. I also never used bug spray because I didn’t like putting chemicals on my skin and hated the way it felt. In September of 2012, when my son Thomas was 6 months old, my husband and I took him for a hike in the woods in his little baby sling. Looking back now, I believe this was the day I was likely bit by “the tic”. A day after that hike, I suddenly came down with symptoms that felt like the flu: joint pain, severe fatigue, and headache. Being a new mom, I just assumed that it was because I was 40 years old and not sleeping much. However, when the symptoms continued for a week and seemed to be getting worse, a scheduled an appointment with my primary care doctor.
I explained all of my symptoms to her in detail: feeling tired, body aches, joint pain, headaches, stiffness, and insomnia. She completed a physical exam and ordered blood work. Never did my physician ask me if I was outside or could I have been bitten by a tic, let alone order a blood test for Lyme. She ordered blood work but a Lyme test was not on the list. Looking back, that one test could have prevented me developing chronic Lyme disease and having to deal with this debilitating illness for the rest of my life.
After two weeks of waiting for my physician to call me about my blood work, I ended up calling her because I was still extremely ill. I forced myself to get out of bed to see clients and would come home and try to parent my six-month-old son. Thank goodness I have a supportive husband to help me. I was starting to question if I was losing my mind or becoming a hypochondriac. I was looking so ill that my clients were asking me if I was ok?
When my physician finally called to discuss my blood work she told me that I tested positive for Epstein Barr and that I had tested positive for acute antibodies of Ebv Ab Vca, Igm. What I know now, and what I didn’t know then, is that these little letters are a huge indicator that Lyme is present in your body. I also now know that Epstein Barr is often a co-infection of Lyme disease.
At that time, I had no knowledge about Lyme disease and apparently either did my physician, which is very disheartening seeing as how we live in an area where Lyme disease has become an epidemic. When I asked her what the blood work meant and if it explained how bad I was feeling, she simply said, “yes, you are going to have extreme fatigue until the Epstein Barr is no longer in the active state and that I would have it for the rest of my life.” She also mentioned that it looked like my body was fighting off an infection but she did not say what kind of infection. The grand cure: just rest and it will go away on it’s own. As I write this now, I could kick myself for not looking further into the blood work myself. I trusted my physician and that was a huge mistake!!!!! If I was tested back then for Lyme (a simple blood test) and treated with antibiotics at that point in time, I likely would not currently being suffering from Chronic Lyme Disease. Unfortunately, this is the story I hear way too often with many people who now suffer from Chronic Lyme Disease.
I am a pretty stubborn and highly motivated person, and was not going to settle for feeling fatigue for the rest of my life. After talking with several people that reported good results with hormone therapy for fatigue issues, I went to see a local physician that specializes in hormone therapy. I figured at least I could get a second opinion on my blood work. At this point I was so desperate I would have done anything to feel better.
This new hormone physician was quite pricey and did not accept insurance but because I was feeling so bad, I was willing to pay anything. He looked over my blood tests and said that he wanted to have me tested more in depth to look at my cortisol levels and thyroid levels. He said that he did not feel that my fatigue was due entirely to Epstein Barr and that he believed my hormones were out of balance. He reviewed all my blood work and never mentioned anything about Lyme disease and he never mentioned that I had tested positive for acute antibodies of Ebv Ab Vca, Igm. He agreed that my infection levels were high because I was fighting something in my body but he never, ever, mentioned Lyme Disease: result was a second physician dropping the ball. And again as I write this I find myself filled with anger about the illiterate physician working in Northeast Pennsylvania not knowing a thing about Lyme disease.
So my new hormone doctor conducted extensive blood testing and salvia testing, both of which were not covered by insurance. By now I was smarter and requested a copy of my blood work. When I reviewed them prior to my follow up appointment, they looked normal in regards to my cortisol and thyroid. However, when he reviewed my blood tests he was certain that my cortisol levels and thyroid levels were out of balance. Now I was really starting to think I was losing my mind. But back then, I trusted physicians because after all they went to school for a long time like me and I assumed they knew everything. I will never believe that again for as long as I live!
This hormone doctor was so good at believing his explanation of my blood work, he convinced me that I now had the answer to why I was so sick: thyroid issues and cortisol levels. In many ways I was relieved because that meant that if I took all the pills he wanted me to take, I would finally feel better. He prescribed a number of supplements, thyroid medication, and cortisol pills. I took them all like the good little patient I was but after a few days on these pills, I began to feel worse instead of better. When I went back to see him for a follow up and told him how I felt worse, he told me to up my dose. My gut instinct was telling me this guy is out of his mind, but mistake on my part, I did not listen to my gut and I upped my dosages. After a few more days, I was feeling so bad that I was ready to check myself into the hospital. However, embarrassed as I am to admit this, I kept taking the damn pills. I think at one point I was even trying to convince myself that I felt better. We tend to do that when we are paying a lot of money for our health care and see multiple physicians.
In between all of this, I somehow still managed to get myself to work and parent my son. I then found out that I had polyps and cysts on my ovaries. Now most people do not get excited when they find out that they have to have major surgery to remove polys and cysts from their ovaries, but I can actually say I was excited! I thought again, so this is the answer! This is why I have been feeling so sick. I happily scheduled my surgery and looked forward to relief. But my happiness was short-lived. My periods and cramps improved but I was still feeling fatigue, extreme pain, insomnia, mood swings, headaches, and generally looked like absolute hell.
Shortly after this surgery, I found out I had an abnormality on my breast. And again, I am embarrassed to say this, but I once again was relieved because I thought well if it is cancer that will explain why I am so sick. Luckily my biopsy came back negative but now I was really feeling like I was losing my mind. As a psychologist, you do not want to ever feel like you are losing your mind….
In the meantime, I tried to continue to just maintain my life and I so I tried my best. I was convinced that I had Epstein Barr and would have chronic fatigue forever but I did not want it to take my life. So not being one to just sit and rest, I was running my private practice, taking care of my little boy, and my husband and I bought a new home before selling our old one. We found a house on the water, which is something we always both wanted and we could not walk away from it. It was not the ideal time because we had just finished our paperwork to adopt a second child and Thomas was not even two years old. We wanted to fulfill our dream of having two children and we were getting older so we didn’t want to wait. Never did we think that we would be matched with a second child so quickly, but low and behold…little Lucas came to us before we ever moved into our new home. So off we traveled to another state on New Years Eve to get our second child, leaving our two houses, dog, and bringing little T for two weeks to live in a hotel. And then we find out that Lucas has colic. Need I say more?
When I say that I was exhausted, I was beyond exhausted… there are no words. I was so fatigued, my knees began to hurt so bad I could barely get out of bed and yet we had a new baby with colic and Thomas to care for. And on top of that, I needed to return to work to run my private practice. There were days where I did not know if I could go on. If it were not for my husband and my two little boys, I don’t know if I would have. I just kept telling myself that I had Epstein Barr and I had to put on my big girl pants and deal with it.
Around this time, my mental health was really starting to scare me. I was so overwhelmed with Lucas and his colic that I was having horrific thoughts of throwing Lucas out the window because he would scream for 8 hours a night non-stop. No matter what we did, and we did everything, he just would go off like an alarm bell at 8pm every night and turn into a little demon. It felt similar to what woman describe who suffer from postpartum depression. I never hurt him and removed myself from the room when my agitation became high, but to feel this way about your child is terrifying. Thank God my husband took over most nights because he knew I couldn’t handle it. Here I was finally having the children I always wanted, going through the roller coaster of adoption, and now I want to throw my child out the window? How could I want to hurt my precious son that we worked so hard to obtain? Something was definitely not right. I also found myself more agitated and had bouts of depression where I would go in the bathroom and cry. I called a friend of mine who is a psychiatrist and met with him because I needed something to control my agitation. I started to take an SSRI to manage my agitation and depression. It seemed to help somewhat but I still was not feeling myself at all. This is something that is very hard to share with others, but I feel it is important because it is another way Lyme disease affects you, it affects your psychological health as well. It also affects the people you love and can ruin their lives too.
I managed to get through parenting two young boys, trying to enjoy them as best as I could, run my practice, but I was still very sick. I went to work but decreased my hours because I just couldn’t do it anymore. This was also not like me at all. Before having children I would work 60 hours a week without batting an eye. Then I started to have even more symptoms and my wrist and lower arm were going numb. I was sent to a nerve specialist who diagnosed me with carpel tunnel syndrome and told me I was going to have to have surgery. Well luckily I was feeling so bad with everything else, I postponed the surgery and elected for the cortisone shots. He never asked me about Lyme disease and was sure I had carpel tunnel so I had the shot. I actually went back for a second one because the symptoms kept coming back. I now know that sudden numbness in various parts of your body is also a symptom of Lyme. I was actually going to have the surgery anyway because the numbness was getting severe and the nerve doctor refused to give me more cortisone shots. I scheduled the surgery but something in me told me to cancel it until I after I met with a new primary care doctor. Thank God I listened to my intuition that time.
Eventually I had enough and decided that I was going to see a new primary care doctor that I heard excellent things about. I scheduled the appointment but had to wait a month to get in to see her. In the meantime, I finally listened to my inner voice and stopped taking all of the supplements and hormone pills prescribed by the hormone physician and never went back to see him again. And what do you know? I felt a bit better. Of course I did!! I was poisoning myself!! I still had extreme fatigue, joint pain, insomnia, mood swings, now some depression, and chronic headaches.
In the process of waiting to meet with my new primary care physician, I decided that I was going to meet with a psychic medium. I am into that sort of thing and I thought that maybe my dead relatives would come through and perhaps tell me what the hell was wrong with me. I remember the day vividly. Before I could even get my coat off she looked at me and said, “I have to tell you, you have Lyme disease.” I was thinking, whaaaatttttt??!! I couldn’t even get any words out because I was thinking, “what the hell is Lyme disease? And then I thought about a tic. And I said, “well I was never bit by a tic but I have been very sick.” She then went on and on telling me all about Lyme and how many people never know they are bitten and that she had Lyme and my head was literally spinning. And then she started to ask me about symptoms and I had every single symptom that she asked about. Now in my mind I was thinking, “look, I am here to talk to my dead relatives and I am not spending all this money to talk about Lyme disease so can we get on with this reading.” Well thank goodness this woman was persistent. She was telling me some messages but she kept saying your relatives want you to know you have Lyme disease. I literally left there thinking, enough with the Lyme! But guess what, I went home and finally started my journey on becoming the CEO of my own health care. This psychic literally saved my life.
So I got on the Internet and I looked up everything I could find on Lyme disease. I was crying and angry because I knew in my heart that this was what was wrong with me. Now being a trained psychologist and having a strong research background, I was not about to go on the word of a psychic so I waited for my appointment with my new physician. I went in and I told her my lengthy story and all I had been through. I then told her in a laughing voice, “I went to a psychic and she told me I have Lyme disease.” To my surprise, my new physician took this seriously and she said it made complete sense to her given everything I told her. There was no hesitation; she immediately ordered the blood work to test me for Lyme. Two days later I received a phone call from her office telling me I did indeed test positive for several bands of Lyme disease. It was now 2014, two years later, and I finally found out what was wrong with me. I started Doxy and within 1 week I started to feel better. I couldn’t believe it. She also told me that she was ordering the Western Blot and wanted me to have that done immediately and then come back and meet with her. I finally had my answer and a physician who believed me and didn’t think I was crazy.
My Western Blot came back positive as well and I also found out that I did not have any issues with my thyroid or cortisol levels and was taking medication for a long time that was literally making me more ill. I also realized that I did not have carpel tunnel and did not have to have the surgery because after being on antibiotics for two weeks I was beginning to regain feeling in my wrist. My primary care doctor referred me to a local Lyme literate physician and so the second part of my journey began: but at least I had an answer and a plan to try and get my health back.
So again, even as I write this it is hard for me to believe that I listened to the medical advice I was given. After all, I am an educated woman who works in health care. It is actually embarrassing to even share this. But I am pushing through my own embarrassment to share this with you because I fear so many people out there are misdiagnosed. So many of us just listen to our physicians. And why wouldn’t we? Isn’t that their job? Of course is it! But I am hoping that you will learn from my mistakes and that you become the CEO of your healthcare. I learned this the hard way.
This is not bashing physicians because there are some excellent ones out there, and I have found them. However, just because someone is a doctor does not always mean they have all the answers. If something feels off to you, listen to your gut! When I look back on this, I knew that something felt off about my treatment, however, I was so desperate that I didn’t listen to my inner voice. Please don’t let that happen to you with your health care.
Even though I was feeling better than I had in two years, once I stopped the Doxy after my month dosage, all my symptoms started to return. I had to wait for months to get into see the only Lyme literate doctor in Northeast Pa who took my insurance so I went back to square one while waiting. It was so frustrating…
On April 6, 2015 (now three years after I initially had Lyme Symptoms) I finally met with my first Lyme Literate Physician. Those who have suffered with Chronic Lyme Disease will understand when I tell you how wonderful it felt to finally meet with someone who truly understands this horrible disease and how to treat it. The sad fact is that there are not enough Lyme Literate physicians in my area, especially those that accept insurance, so you often have to wait months to receive proper treatment. This can mean the difference between functioning and being debilitated.
After meeting with my first Lyme literate physician, I began taking 15 supplements, 1 injection, high dose antibiotics, and eliminated sugar. A few weeks after meeting with him, I had an episode that terrified me. I was driving my son to preschool and I completely forgot where it was. I drove right past it and Thomas said, “mommy where are you going, you passed my school.” I felt disoriented and mentally off. At that point I knew I was going to get another opinion because I was not about to develop Neurological Lyme Disease. I need my brain to be a psychologist and I was not about to have my work taken from me too.
I researched several doctors and decided on seeing a doctor in upstate New York that was quite expensive, but at this time in my life I did not care what the cost. And please don’t get me wrong. Through all of this, I have always said that I am extremely lucky to have monetary resources because people who do not cannot afford a second opinion or afford to pay for all the supplements that are often required in order to feel better. It is a very, very costly illness, one that I have spent over $25,000 a year out of pocket on, on top of paying for my own health insurance. It saddens me that in order to get proper treatment you have to have money.
When I met with my second Lyme Literate doctor who is also an integrative physician, I learned even more about what I have been suffering with. I was given additional blood testing and found out that not only did I have Lyme Disease, but I also have two other co-infections: Babasia and Mycoplasma. So now I have the total of four big diagnoses: Lyme disease, Babasia, Mycoplasma, and Epstein Barr. Each of these requires special treatment.
The day I met with him, I started an intensive treatment regime. He put me on the Paleo Diet (times 20!). I am supposed to only eat organic vegetables, limited organic fruit, organic nuts, organic seeds, organic eggs, and organic/hormone free fish, chicken, and meat. No diary, no sugar, no wheat, no gluten and no corn. I found out that I am allergic to corn, dogs, and dust. I ate things with corn for years and never had any external symptoms but apparently I could have been internally inflamed. Corn is in almost everything for the record. As for the dog allergy, I would never get rid of my beloved 16-year-old dog Sophie…end of story! I deal with the dog allergy by taking medication.
I also started to take even more supplements and a hard-core probiotic to protect myself from the side effects of all the antibiotics I had to continue to take. I was literally taking 30 pills, twice daily, at one time. It was extremely difficult to take all the supplements and antibiotics when I couldn’t take them with any bread-type carb. But I found a way. I had several episodes of vomiting but I didn’t let that stop me. I had to meet with a cardiologist on a regular basis as well to make sure the antibiotics were not affecting my heart. At that time I was taking Zithromax 250 mg twice daily and Mepron twice daily.
After about 10 months of following the diet rigidly and taking all supplements and antibiotics as prescribed, I was having more good days than bad days, but still not feeling better on a regular basis. The good news was that since beginning with my second doctor I have not had any episode of neurological impairment and he believes that as long as I continue to treat the Lyme and co-infections, it will not impair my brain.
During those years there were several times were I feel good (what I refer to know as my new normal) and then a week where it was difficult to get out of bed. I began to look into Herx reactions to Lyme being killed off by antibiotics, and it seemed to ring true to what I was dealing with. I had been on various antibiotics at that point in time for over 14 months and I was becoming increasingly concerned as to what they were doing to my body on a long-term basis and that is when I started to do more research. I kept thinking that there had to be another way to treat this horrific disease. The antibiotics were killing the Lyme disease but I felt as if they were killing me as well.
Late nights of insomnia led me to read Healing Lyme by Stephen Buhner. I went to his website and read story after story of what I had been dealing with and how his herbal protocol changed their lives. If you live with Lyme and have done research on the topic in order to get better, you find rather quickly that when a large portion of people report getting better from something that seems to have no cure, you do what is being suggested. I ordered all of his suggested supplements (of which he gets no money for). I figured I would try the Buhner protocol for Lyme, Babasia, and Mycoplasma for 3 months, continue with the supplements suggested by my second Lyme Doctor, and continue to follow my Paleo Diet and see what happens.
Low and behold, this protocol began to change my entire life. I went from feeling absolutely horrible 5 out of 7 days a week to feeling better 5 out of 7 days a week. And in the warmer weather of summer, I was feeling good (again, the new normal good) approximately 24 days a month, with limited bad days. When you have suffered from Lyme disease as long as I have, to feel this relief is absolutely amazing! I began suggesting this to all of my Lyme patients and those who could tolerate the herbal treatment saw significant benefits as well. It should be noted that to follow this protocol, it is quite pricey.
It is now 2018 and I continue to take antibiotics on and off as needed along with an intensive vitamin and supplement protocol. I do my best to follow my diet and I have even started to begin trying to exercise again. I am now using this experience to help clients who suffer from Lyme disease. Recently I started a Lyme therapy group at my office in Clarks Summit, Pennsylvania. If you are interested in joining this group or being put on the wait list for the next group please call my office or click here (add link)
I am now working on writing my first book on the psychological affects of Lyme disease. I am also working to develop on online seminar for Lyme disease. Please subscribe to my email list if you want to be informed about upcoming offers, weekly newsletters, my seminar, and a blog that I am starting. I look forward to helping all of you out there who suffer with this illness and please never give up hope!