Finding out, treating and defeating
Lyme Disease and Babesia (a Lyme co-infection)
I remember the day when I smiled for the first time in a really long time. I surprised myself and thought, “This is funny” and I enjoyed my smile. That was when I knew I was getting better. And I realized, there was a long time between when nothing felt funny or made me smile, as it felt the Lyme made me somewhat paralyzed. The smile was the sign of me getting slowly better and better.
This is a story of the time in my life when I fall to an illness that I would only realize how it can make you feel, until it had happened to me. As I am gaining more energy and mental clarity, I want to share my story, and what I learned through my own recovery and my research about Lyme disease and its Lyme co-infections on the way to recovery.
I love the outdoors. I spent each season doing something fun outside, camping, hiking, swimming in the rivers, and admiring the forest and nature for its abundance of freedom and love. And it seemed that suddenly everything changed, and I was looking for answers as to why I felt gradually worse.
Well, one of the first craziest symptoms happened to me on my trip in Europe, in the summer of 2015, (little over a year before my Lyme diagnosis). While in Europe, I rented a car with a stick shift and drove through the Czech Republic, Austria and Germany for about three weeks. As the trip progressed so did my tiredness. As you know, on a road trip you sleep less, and the tiredness is somewhat expected. The last two days on my trip in Europe, as I was driving on Autobahn in Germany towards Prague, Czech Republic, I temporarily forgot how to drive a stick shift, and that is happening while I am driving. It really alarmed me, and I had to force myself to think about how to change gears and into telling myself word for word what to do, so I could downshift or upshift. “Ok, so to switch a gear I need to step on the clutch with my left foot and then I can shift . . . .” This happened a few times towards the end of the trip, and now I know it was the Lyme getting to me. Creeping up slowly over the years with light, masking symptoms at first.
I was diagnosed with Lyme disease in October 2016. I was relieved to finally hear from a caring doctor that this is what has been making me feel so awful. A few months later I also found out about having a Lyme co-infection called Babesia Duncani. It took six months for Babesia to show up on a test, as Babesia likes to hide in the body. My LLMD a Lyme Literate doctor kept telling me, “You do have Babesia, and it will show up on the test, you have all the classic symptoms”. And it did show up on the tests after six months, while I was already on the treatment for Lyme disease. I am stating that only because many people get tested, and tests do come back negative. Listen to your body, and find a LLMD a Lyme Literate doctor, who understands Lyme disease and tick born infections, not just from blood tests but from symptoms as well, as it sometimes takes time to show up on tests. These little bugs love to hide.
Now back to March 2016 (seven months before Lyme diagnosis). I woke up at 4 a.m. to get a glass of water. I was unusually thirsty. I filled up my glass, while standing by the refrigerator, and I thought to myself, I feel weird, and I tried to quickly walk over to the couch, and before I could make it there, I fainted and fell over a chair and landed on top of a cat scratcher. I almost broke my nose, and I hurt my neck pretty badly too. My husband helped me up. I gained consciousness, and as I was sitting on the couch, I almost fainted again. It really scared me. What is wrong with me, I thought. I called in sick that morning, as I felt I was coming down with the flu. My body hurt all over, and I felt really tired.
For a couple of months, before my fainting incident, I remember having excess thirst and dry-mouth in the middle of the night; it was also always accompanied by a deep headache when lying down. Once I got up and moved around, the deep headache went away. I always blamed it on daily stress. I remember being more tired then too, and coffee that I normally liked having in the mornings did not taste good to me, and it did not have any of the pick-me-up effects. And I recall all kinds of symptoms now; they were just little symptoms that came and went over the past years, but I never thought anything of it. Some of those included sinus infections, tiredness, and joint pain, having a feeling that a hot drop of water is sliding down my leg, or that some bug or spider is crawling on my back or leg, eye sensitivity to light, sensitivity to some sounds, mostly loud sounds and music. Some of these minor symptoms only lasted for a few seconds at a time, and I was back to normal. Now I know; those were the very first signs of Lyme disease before I got really sick.
Over the next few days after my fainting incident, I was convinced I had the flu, and that the fainting was part of the flu. About 5 years earlier, the same thing happened to me; I fainted, and I thought I had the flu then too, and then in a week I was feeling better. That too was my early Lyme disease symptom then, and I had no idea. Back then I had a high energy level, practiced yoga, went hiking, and lived a happy life.
But this time, I was not getting better. My body was so weak from the infection which I didn’t know I had at the time. For five weeks I was mostly bed-ridden. Every few hours and every few days, weird symptoms came and went; chills, sore joints, sore muscles, fever, nausea, and weakness, shortness of breath and chest pain, skipped heartbeat feeling, extreme tiredness. I kept telling myself, it is just some bad flu, I will get better soon.
When I was not getting any better a week later, I called my family doctor, and a nurse told me that some bad flu was going around, and it lasts for about three weeks. After three weeks without any progress in feeling better, I wanted to make an appointment with my family doctor.
Since I have not been to my doctor for a few years, they could not make me an appointment with them, since more than five years has passed. They said I would be considered a new patient and had to wait for three weeks to get in. Even after telling them on the phone all my symptoms, and how long I have been feeling this way, it did not make any difference in making the appointment. I was still considered a new patient and had to wait for a few weeks to get in.
So in the meantime, I went to Med7, for an advice. There they gave me antibiotics for sinus infection, and a week later nothing has changed.
My symptoms remained the same; I was also sweating excessively, mostly on my back. I would take my dogs for a short walk in the mornings, and I would have my back soaked by the time I would get back, and I was so exhausted. Any little physical activity made my back sweat. I knew something was not right with me. I decided I need to rule out a few things. This feeling of being so tired, exhausted, that I could hardly do anything, was just not acceptable.
Now, I started to think of what could I possibly have to make me feel so poorly. I started to think, maybe I have mono. And I thought of Lyme disease as well. The symptoms listed for Lyme disease were exactly what I was experiencing.
I was bit about ten years ago, after hiking in the Yosemite area; I found two ticks in me, one close to my neck and one on my ankle. I removed them and felt fine. Since then, I was bit one more time about four years ago, in the Placerville, California area where I live. This tick was attached on my ankle, I removed it right away, and I was fine. I do live in a forest area with lots of wildlife around.
Since I was waiting for my appointment with my family doctor; I decided to look online to see if I could order a lab test somehow. I ordered a test through a walkinglab.com, and tested at LabCorp lab. Walkinglab.com is a great online web site where you can order pretty much any test, and they will direct you to the lab they use in your area for testing. One thing I found out later is, the test at walkinglab.com for Lyme disease test is only 50% sensitive.
(note: see “testing section” on this website for more info where is best to test and how to obtain a test kit for lyme borne illnesses).
I ordered a mono test, and a Lyme disease test, and I was pretty sure both blood tests would come back negative. I was hoping for mono, so I could feel better about my crazy symptoms.
Well, the mono was negative, and the Lyme disease test came in positive with two bands. My family doctor did not think much of it, and sent me home with two weeks of doxycycline antibiotic, and that was after me telling him the 20+ symptoms I had been having on and off for the past few weeks. He did not really think there was anything wrong with me. I was telling him about my exhaustion, and he just said I looked healthy. The nurse practitioner was more concerned about me then the doctor.
As the summer of 2016 progressed so did my symptoms, and I went back to the doctor two months later, again he sent me home, and told me I looked healthy and to go enjoy my life. This time I was in tears, I could not imagine going much longer like this. My quality of life has gone from 100% to 10%. Now this is about four months since my last Lyme test, so I decided to retake the Lyme disease test again through Walkinglab.com
While I was visiting my sister in Oceanside, California, I received a phone call from the lab, telling me my second test results for Lyme disease came in, and the test came in positive with all the bands. The lady on the phone told me to go to get a treatment as soon as I can. Hearing this message from someone on the other line shook me up. At this time I was at a breaking point, emotionally and physically exhausted from feeling so poorly for months. Visiting my sister and trying to pretend that I am ok just did not work anymore. I broke down in front of my family, feeling like I had lost it. My chest was hurting, my heart was pounding, I had so many symptoms that migrated from place to place, daily, hourly, minute by minute.
After the lab’s phone call, I got the chills, and in the 90 degree weather, I put on a sweatshirt and laid on the bed and cried. In some ways I was relieved to know that finally someone like the “lab” recognized my illness, since my family doctor did not have much interest in my declining health. At the same time, I was scared about what Lyme disease can do to you; there were a few nights when I was not sure if I would be here the next day. It can make you feel awful. Really awful.
I went to the same family doctor again, (I don’t know, what was I thinking), and showed him the latest positive tests I received form the lab, that showed this time all bands positive for Lyme disease. Standing in his office with my husband, the doctor looked over the tests, and smiled and said, “You do not have Lyme disease, and if you did, you don’t have it anymore”. Right then I knew I was leaving this office; I do not want to have someone like him taking care of my health, my life. This same doctor also mentioned that he knew of some lady who was on Lyme disease treatment for a year and still had it, and kind of smiled, like he did not believe in Lyme disease at all. Well, now I know this doctor had no idea about the length of treatment for Lyme disease at all or that he understood this complicated infection. And I will forward him the link to this web site when I am ready to share it with all of you. And I am also planning to write this doctor a letter; I would not want anyone to go through something like I did.
I am happy that my intuition had led me to caring doctors. I researched for Lyme disease specialists, and to my surprise I found out there are only a few LLMD (Lyme disease specialists), in the whole country. I found a great LLMD in San Francisco. It takes time to make the first appointment, but I was lucky enough to get in within a few weeks.
My new LLMD took one glance at my tests and nodded. Yes this is a positive test; you have Lyme disease. Then she listened to my story and my symptoms. All the symptoms I have been having over the past few months (and years), were indications of Lyme disease. My LLMD tested me again with more sensitive tests (through IGeneX lab), and also tested me for Lyme co-infections. My first appointment was almost two hours long, what a difference in doctors that care. This doctor listened to what I had to say and genuinely cared.
I also found out the treatment for Lyme disease can be 2-3 years long. In some cases it could be longer. It all depends on how long you’ve had it and how it affected your body. Everyone is different. And the treatment for everyone can be very different too. It is a very complicated infection. And then there are Lyme co-infections that are treated first, before the treatment for Lyme disease can begin.
All this was so new to me. I wanted to know more about Lyme disease and what is happening in my body, and how I could help myself the most with western medicine and holistic treatments. I started my own research though books, the internet and by talking to others.
My treatment with my LLMD (Lyme Disease Doctor), started on October 15th, 2016.
My LLMD warned me that starting this treatment will most likely make me feel much worse before I get better. I was ready for anything; I wanted to be well, strong and enjoy my life again. I researched the right diets for the treatment for Lyme disease, and anything else that would help out with curing Lyme.
The first three months of the treatment were the worst. and you get the “Herx” from time to time. Herx is a detoxification reaction your body has from the die-off of bacteria. It is the worsening of symptoms before getting better. The first Herx was awful. I felt dizzy, had double vision, headache, nausea, weakness, I felt scared, among the other usual symptoms that came and went. It is hard to explain how it makes you feel, but it is an awful feeling. The first time I had the Herx, I emailed my doctor, who assured me I was Herxing, and that is a good sign. As time went by, I got used to the Herx that came and went. It happened every three to four weeks or so; sometimes the Herx would last for a day, but usually for five to seven days. Some were better than others. About three months after starting my treatment, I started feeling a little better. I had a little bit more energy, and the Herxes started to be less intense.
My body weakened to the point where I did not drive for a while. I had to stop working. The crazy symptoms that come with Lyme disease are very unpleasant, and as I know now, it is very individual how one feels. The symptoms can be anything. The symptoms are very broad from person to person, it can affect you physically, emotionally or psychologically. It is very scary.
Six months into the treatment, I started feeling better, I had little bit more energy and less of the usual uncomfortable symptoms. And I stared to drive my car again. Well, it was with baby steps, the first trip that I took was to a local store, I drove there, but was too tired to go in, so I drove back, and I was so exhausted from this short trip that it took me a few days to recover. It is like two steps forward, one step back in getting better and better. But I kept and I keep pushing myself, and adding new things each day or each week to my daily routine. Sometimes you have to slow down, and there are those few days, sometimes weeks, when your body needs time to catch up, but it always gets better and better.
As I started to gain more energy (about six months into the treatment), I also was able to take another step towards helping myself in healing, I started getting regular massages, they are wonderful for getting everything moving in your body, as Lyme loves to hide, in your joints, tissues, muscles, organs, so massage is an amazing way to help you heal. Hypnotherapy is an amazing way that I tried as well. It sets your subconscious mind to help you heal and to build a strong immunity and the ability to mentally believe you are healing and winning this challenging journey. Acupuncture is so healing and relaxing. And also the sauna is wonderful. I need to work myself into the sauna, as heat does not make me feel well at all with having Lyme. And I used to love to go to a sauna at least a couple of times a week, before I got Lyme. I always feel that I need fresh air, which I know is a Babesia symptom, as you are robed of oxygen from having Babesia. Healthy eating is my priority, organic foods, quality water, doing light exercise and getting good sleep and getting enough rest during the day is part of my healing pack.
Lyme brain is something many experience while having Lyme disease. I did too. At the beginning of my treatment, I noticed trouble thinking clearly. When I read, I had to re-read things sometimes a few times for it to make sense. At the very beginning of my treatment there were times where I just could not think. There were times or a few days, when I just sat on the couch and did not know what to do next. It was a very scary feeling; it’s like you are watching yourself going crazy, and that is a scary feeling. Also solving any easy task was a huge task all of the sudden. It was almost not possible to solve some simple day to day problems. Eye sensitivity to bright light and hearing sensitivity to loud music and loud sounds were some of the first symptoms before I knew I had Lyme disease.
Hearing sensitivity, blurred vision, eye sensitivity, joint pain, muscle twitches, headaches, nausea, are just a few daily symptoms. Skipped heartbeats are among my uncomfortable symptoms too. The skipped heartbeats are happening less frequently now, as my body is getting stronger. And there is a long list of symptoms that happened to me over the past two years. Some were ok, and some were very scary. As I am getting stronger, the symptoms are going away too.
And I know the symptoms are VERY different from person to person with Lyme disease. Some of us have less intense symptoms, some of us have more symptoms, and some of us have much more intense symptoms, to the point where we lose the ability to walk, and to take care of ourselves.
And as we get stronger and healthier the symptoms go slowly away. Treating Lyme disease is a long haul, it will try to break you down, but you must keep going and winning and trying your hardest to help yourself do the best so you can heal and you will win.
There is no one-size-fits-all treatment for Lyme disease or any of its co-infections. I learned this from the book, Healing Lyme by Stephen Harrod Buhner, and by talking to my LLMD and from my own experience.
I started my Babesia treatment in June 2017. That is when I tested positive for Babesia Duncani, for the first time. It took about six months for Babesia to show up on my blood test, as it loves to hide. But all along, my LLMD kept telling me, she knew I had Babesia; I had all the classic symptoms, skipped heartbeat, wall chest pains, red dots on skin, air hunger.
She was right, Babesia Duncani showed up on my blood tests. I also found out that Babesia is the hardest and longest of all Lyme co-infections to treat. It takes about a year to two years to treat Babesia. Babesia is an intracellular, malaria-like parasite, also known as a “piroplasm,” that infects red blood cells. Babesia (or any co-infection) needs to be treated first before Lyme disease. I started the treatment for Babesia in June 2017, it is treated with the combination of an anti-malaria drug and antibiotics. Six months later I tested negative for Babesia. But you need two negatives in a row for Babesia to be negative. Each blood test is done three months apart. Three months later my next test turned positive for Babesia. My LLMD changed my meds (as Babesia is getting more resistant to some treatments), and in March 2018 I started on a different anti-malaria and antibiotic treatment. For three weeks, I had a really bad Herx with this treatment, to the point where I was pretty much bed ridden for a few days, but the Herx is a good sign; it means the treatment is working.
December, 2018, I am Babesia Free! I had to have two negatives in a row, for Babesia Duncani to be a true negative. Tests are three months apart. I am so happy! It’s one of the best Christmas presents ever! I have been waiting to hear this great news for a long time. I have been on the treatment for Babesia Duncani for 19 months. Babesia is treated with a combination of anti-malaria drugs and antibiotics.
Also, since my experience with my not-so-carrying family doctor, I found a carrying family doctor who takes a great interest in Lyme disease and appreciates any new information I give him. He is also very interested in my progress in treating Lyme disease and wants to be always updated with my newest blood tests that I get through my LLMD (my Lyme Literate Doctor). I can tell he cares about my health.
While treating Lyme disease with your LLMD, it is also important to have a good family doctor, who takes interest in Lyme disease and your progress with the treatment. As Lyme disease and its co-infections can affect any part of your body, you may be at times advised by your LLMD to get certain testing done, and that is when a good family doctor comes into to play, someone who can easily recommend you to a specialist if needed. Or for example, one who can run an EKG in his office if recommended by your Lyme Doctor.
For all of you and your close ones that are battling Lyme disease and its co-infections, I wish you the very best to get well soon and to start feeling better and better! Do stay positive, get on the right treatment with the right doctor, stay strong, believe you will be well, keep fighting and YOU WILL start feeling better and better. And as you start getting better and feeling the closeness of recovery, you will be cherishing your life with a brand new perspective, enjoying life fully, and be your very happy YOU. And for families and friends who worry about you, tell them to be positive, one thing we “Lymies” need, is positive affirmation and laughter; it heals!
Surround yourself with positive, happy people and situations. Watch funny movies, read and tell yourself positive affirmations, eat healthy, exercise a little, even if it’s just a short walk at first, or at least visualize what your exercise would look like, and do it when you get a little stronger. Remember, baby steps. But do try to push yourself a little, you will adjust to your limits, always listen to your body. Have your family and friends read a little about Lyme disease on their own, or tell them about it if they are willing to listen. You can explain to them, that Lyme disease is a very complicated infection and you will probably not be yourself for some time, and that the treatment is pretty hard on you too. Some people may have hard time understanding or even accepting this hard situation. There will be people who will offer their help. Take it. And pretty soon, you will start feeling better and better, and have a smile on your face.
I am so grateful for meeting some amazing people, teachers and healers through my journey in treating Lyme disease. Their friendship, knowledge, wisdom, sophistication is truly priceless. And I am very grateful for my family and friends’ positive support, it helps me heal!
I will be updating my story as I go through my treatment to full recovery. I am looking forward to having my energy back, I do miss it. But I know I WILL get well. And You WILL too!
December 18th, 2018 I am Babesia Free! I had to have two negatives in a row, for Babesia Duncani to be a true negative. Tests are three months apart. I have been on the treatment for Babesia Duncani for 19 months. Babesia is treated with a combination of anti-malaria drugs and antibiotics.
I am starting treatment for Lyme Disease. I am free of Babiea! I will get tested for lyme every three to four months.
Last time I got tested with the newest tests for borrelia the bacteria that causes Lyme disease.
There is 52 species of borrelia, half of them cause Lyme disease and half of them cause Relapsing Fever Borreliosis. I found out that I have both. I was really unhappy about my results. Most likely I had the relapsing fever together with lyme the whole time. The testing were just not devided into two sections.
I am feeling better and better, more energy and mental clarity.
I will be updating my story as I go thought my treatment to a full recovery.
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