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 do not remember having found a tick 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 Lyme disease. And in all honesty, I never really had a lot of fear around it because I had little understanding of Lyme disease and how much it can destroy your life.
In 2012, I started to suffer from severe fatigue. At first I just assumed that it was because we had just adopted our first son in January and how could I not be tired being 40 years old and having a new 6-month-old baby? However, by September 2012, I could no longer ignore that my extreme fatigue and increasing joint pain, were probably not due to taking care of little Thomas. I decided to schedule an appointment with my primary care physician. I explained all of my symptoms to her: feeling tired, body aches, joint pain, headaches, stiffness, and insomnia. She completed a physical exam and ordered blood work. Never did my physician mention Lyme disease as being a possibility. A blood test for Lyme Disease was never even ordered. My blood tests came back in October 2012 and showed that I tested positive for Epstein Barr and that I had tested positive for acute antibodies of Ebv Ab Vca, Igm. I now know 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 diagnosis many Lyme patients end up having.
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. Moreover, it took my physician three weeks to call me to discuss my blood tests. This was after I had I placed a call into her office because I was concerned over my results when I received them in the mail. Once her office did return my call, the simple response I received was my fatigue was due to Epstein Barr and that I was having an acute infection. She could not explain what type of infection, just that I had an infection that my body was fighting off and my Epstein Barr was likely in the active phase. I was told that this is a syndrome that I would likely have for the rest of my life and it would come and go. I was told there was little that could be done and that I just needed to rest. 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 would not currently being suffering from Chronic Lyme Disease. Unfortunately, this is a story that I hear way too often with many people who now suffer from Chronic Lyme Disease. Some are even told that it is all in their head and that there is nothing wrong with them.
I am a pretty stubborn 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.
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. So a second physician never even mentioned or considered Lyme Disease.
He conducted blood testing and salvia testing, both of which were not covered by insurance. When we reviewed the results my blood testing looked normal to me, but somehow he was certain that my cortisol levels and thyroid levels were out of balance. He was so good at his explanation that I believed him. He was certain that these would make me feel better and get rid of all my symptoms. He prescribed a number of supplements, thyroid medication, and cortisol pills. 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. Since I was so feeling so bad, I listened, and again felt worse. This, I am embarrassed to say, went on for a long time. I think 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 also found out that I polyps and cysts on my ovaries. So I thought that maybe that was causing me to feel so bad. I had a major surgery to remove them and still did not feel better. My periods and cramps improved but not my overall health. I also had a breast cancer scare that thank God turned out not to be cancer. But during that time, I thought, “maybe I have cancer and this is why I am feeling so bad?” But after months of dealing with that and finding out that I did not have breast cancer, I still did not feel better. I was really starting to think that I was going crazy, and as a psychologist, this is not a good feeling.
Eventually I decided that I had to find a new primary care doctor and start fresh. I needed someone to find out what was wrong with me. I finally found a new primary care physician that I heard good things about but had to wait a few months 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 what do you know? I felt a bit better. Still not good because I had the same fatigue and joint pain, but the pills that doctor gave me were making me worse. At this point I really started to believe that I just had Epstein Barr and was going to suffer with chronic fatigue for the rest of my life. I knew I would meet with the new doctor but I also came to an inner agreement with myself that I just had to accept that this was my new health challenge in my life that I had to manage.
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 recently 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.
So while waiting to get in to see my new physician, 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. But we did it anyway. 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. And then we find out that Lucas has colic. Need I say more?
When I say that I was exhausted 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 Mike, I don’t know I could 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. I just kept taking two naproxen every morning in order to get out of bed (which remains true till this day) and kept plugging along. Some where inside I hoped that this new physician I was going to see soon could help me, however, a huge part of me just thought, well you now have two babies, you are in the process of moving and selling a house, and working full time; buck up like all parents do and stop complaining.
This is also the time that I began to realize that something was also affecting my mental health. I am not the most patient person in the world; however, I was having horrific thoughts of throwing Lucas out the window when he would scream with colic. 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. Not to mention we wanted children more than anything, which is why we adopted. 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.
I still was waiting to meet with my new primary care physician but in the meantime I started to complete my own extensive research. When I would enter my symptoms: depression, anxiety, irritability, extreme joint pain, fatigue, memory issues, insomnia, and carpel tunnel (almost had surgery for this), what kept coming up was Lyme Disease. When I finally met with my new physician, I immediately asked her if she could test me for Lyme Disease. She was more than willing and did not seem at all shocked by my request when I told her my symptoms. She thought that given my past blood work and all of my current symptoms, that it made complete sense. She obviously knew her stuff. She was also concerned that I may have Arthritis so she tested for that as well. My new physician was also shocked to hear all the hormone medication I was taking and wanted to check my levels to see if after being off all the hormones, if I had any hormone imbalances. Two days after my blood work was completed, my new primary physician called and told me I did indeed test positive for Lyme Disease, I did not have arthritis, and all of my hormone levels were completely normal. No thyroid problem and no cortisol problem. Finally I had some answers!!!
Little did I know the new battle that was in-store for me….
My primary care doctor prescribed me 200 mg of Doxycycline daily for 30 days. I immediately started to take the medication. I continued to research everything I could on Lyme. I went to see a homeopathic doctor who told me all about herbal supplementation and even encouraged me to ask my physician to increase my Doxycycline dose to 400 mg daily since this is the required amount to treat Lyme effectively if it is still in the active phase. At that point I did not entirely understand the difference between active stage and chronic Lyme Disease. I now understand that completely and it is a scary picture. My primary care doctor was more than willing to increase my dose.
I also started to take all the supplements that the homeopathic doctor recommended and I started to improve my diet. I added green shakes daily and drank even more water than I already consume. After a few weeks I actually started to feel a bit better. To me it was a huge difference since I had been feeling so bad for so long that having a little less fatigue and pain was a huge relief. Mentally, I felt so much relief too since I finally knew what was going on with my body.
However, after I took the high dose of Doxy for one month, I still did not feel better. I waited another month just to be sure it was not due to taking antibiotics. In October 2014, I returned to my primary doctor to tell her that I was still not feeling better and she ordered another Lyme test; what in the Lyme World is called a Western Blot Test. If Lyme is still in your system, the Western Blot can tell you how severe it actually is. A few days later the results came back and they were not good. Without giving you all the details of the test, it was severe enough that my primary care doctor referred me to a Lyme Disease Specialists. Since there is only one Lyme Disease Specialists in our area, it took me 6 months to get an appointment.
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 glutton and no corn. I found out that I am allergic to corn and dogs. 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 14-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.
Over the past year there have been times were I would 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 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, which I am going to list for you, it costs around $300.00 per month. This is quite expensive but for me, it is worth every penny.
Here is the Buhner Herbal Protocol that I follow, along with supplements that I take. I also have to take prescription mediations to treat my insomnia from the Lyme Disease. Please note, that if you want to treat other co-infections such as Bartonella, please visit Stephen Buhner’s website which lists all of his protocols for free at http://buhnerhealinglyme.com. I cannot recommend anything better than this. He is an amazing man that has dedicated his life to helping those who suffer from Lyme Disease. I have also listed the sites that I order the herbal supplements from. I get nothing for recommending this, except to know that I have perhaps led people down a different path of treatment and possibility to overcome Lyme Disease or live a better life with this protocol.
Lyme Disease Series
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