The Horror of Lyme Disease

This is going to be a longer message today but I feel it is important to share with you in case you are dealing with a chronic illness or Chronic Lyme Disease like I am. Or if you know someone who is, please share this. As a mother, this can be a difficult and lonely journey. As a psychologist, I want to share the truth about the mental health pieces of Lyme that are often overlooked. I dealt with having heart surgery at the age of 21 from an eating disorder. After that happened and I was lucky enough to survive, I thought I would be able to deal with any illness that came my way. I had no idea what Lyme could do to someone….

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 tic bite ring.” So when I look back, there was never a reason for me to believe I was bitten by a tick or could have contracted Lyme disease. 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.

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, I scheduled an appointment with my primary care doctor.
I explained all of my symptoms to her in detail: extreme fatigue, 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 if could I have been bitten by a tic. Nor did she order a blood test for Lyme. 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.

My physician at the time, never even called me back to give me feedback on my blood work. After two weeks of waiting I ended up calling her because I was still extremely ill. I forced myself to get out of bed to see patients and would come home and try to parent my six-month-old son. Thank goodness I have a supportive husband that helped care for me and our son. 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? I really didn’t know what to say at that time. I didn’t want my clients worried about me but the truth was, I knew that something was very wrong with me.

While waiting for my physician to call me back, I went and got a copy of my blood work. I saw extreme elevations for Ebv, Ab, Vca, Igm, and positive for Epstein Barr. When my physician finally called me back, I asked her about the 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, that I didn’t know then, is that all these little letters are huge indicators that Lyme is present in your body. I also now know that Epstein Barr is a common co-infection of Lyme disease. She did nothing really to explain to me what any of this meant. So I asked her what the blood work meant and what I could do about how bad I was feeling. Her response: “Just rest, you have Epstein Barr and it is in the active state right now so it’s like you have mono, nothing you can take for it.” She also told me that it could happen again because there is no
cure. I asked her what the infection was in my body with the other markers that showed up on my blood tests and she said 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. So I went on the pursuit of finding some physician that could give me a better answer. 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 discussed of Ebv Ab Vca, or Igm markers. 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 another illiterate physician knowing a thing about Lyme disease.

So this 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 went to the lab. 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. 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. If you suffer from a chronic illness, you may understand this.

In many ways I was relieved to have some answer (even if it was wrong) because that meant 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 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. What?!?! My gut instinct was telling me this guy is out of his mind, but I didn’t listen to my gut and I upped my dosages. Note: Always listen to your intuition and gut instinct. 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. 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 2013 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 little Lucas had colic. Need I say more? If any of you moms
have parented a child with colic, you will get what I am saying. 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 was depressed, angry, and scared. 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. This physician discussed Lyme disease and was sure I had carpel tunnel so I got 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? 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 and pointed me in the right direction. So it took a psychic to find out what was wrong we me, not a
physician, a psychic! So I got on the Internet and I looked up everything 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 alone 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 tested positive for several bands of Lyme disease.

It was 2014, two years later after first feeling sick, and I finally found out what was wrong with me. I had no idea that my journey of healing would just be beginning the day I finally got the diagnosis. She prescribed Doxycycline and within 1 week I started to feel better. I couldn’t believe it. My new physician ordered the Western Blot, which also showed several positive bands for Lyme. My thyroid and cortisol were completely normal. I did not have carpel tunnel; the numbness was due to Lyme and cleared up within two weeks of taking Doxycycline. Imagine, I was just about to go under the knife for nothing! My new primary care doctor referred me to a local Lyme literate physician (who had a very long waitlist) but at least I had an answer and a plan to try and get my health back. During the time of waiting to see him, I was very sick but did
my best to manage the best I could. My kids now grew up having a mommy who was not able to do things with them other moms could. I think that is the hardest part about all of this.

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.

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 many 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 yet 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 (and this has
affected our family resources greatly) This cost is on top of paying for my own health insurance. It saddens me that in order to get proper treatment you have to have money and that it can literally make people broke.

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 at that time I had four 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 17-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.
 
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 (on and off if I am to be honest).

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 20 days a month, with limited severe bad days. When you have suffered from Lyme disease as long as I have, to feel this relief is absolutely amazing! I found out that following this protocol cured my Babasia and that was probably as bad as the Lyme itself.

As I write this, I am currently off antibiotics, but that can change at any moment depending on my symptoms. I am now seeing another Lyme Literate Physician and trying to manage with a long list of daily supplements and doing my best to eliminate sugar and carbs (Lyme feeds on this). During the winter and when under stress, I have many more bad days than good but I am doing my best. This is a disease for which there is no cure. It has taken so much time away from me being the mom I want to be but I am using this journey to help others like you. I will talk more in the future on how I have dealt with parenting with chronic illness, but until then, I hope sharing this story helps you. Don’t give up hope…..

Close

Grab my Freebie...
Ending Mama Guilt: How to Find Happiness, Set Boundaries, and Engage in Self-Care Without Guilt

50% Complete