I haven't really had the chance to sit and write down everything; how I got where I am and what life is like compared to what I thought it would be.
I really don't know when I contracted lyme disease. It could have been last year or, from what I truly believe, it was about 10 years ago when I was around 14 or so years old and lived in Kansas. It was during that time that my family took in a dog, Sadie, who was very thin and had many, many ticks but this we didn't realize until we gave her a bath. Since this was nearly 10 years ago, some things are hard to remember. For example, I only remember seeing one tick on me. It was probably in the adult stage (I'm not sure if it was a deer tick or a dog tick or what type), and it was attached to my arm in the crook of my elbow. I don't know how long it was attached, but it couldn't have been for very long. All I remember is taking a nap (I'm also pretty sure it was a Sunday because it was on Sundays that the family would always take a nap after church), and waking up and finding the tick. I kind of just pulled it out of me and disposed of it. At the time, neither my parents nor myself knew of Lyme disease or co-infections. So finding one on me was icky, but I didn't really think much else of it.
I never did get a bulls-eye rash (Erythema Migrans), at least that I can remember. I did, however, have many "excema" rashes for a few years after this, which oddly, just cleared up and I haven't had any since. I don't know if that's common with excema or not.
The only real symptoms I had during this time was that in high school I would have pretty severe headaches every single day and in the very same area of my head (always the right side at the temple). I'd also get ice-pick headaches (which are very sharp pains that feel like your brain/skull is being stabbed with an ice pick) pretty frequently. It got to the point where I thought I had a brain tumor and went to the doctor about it. Of course, (and I should probably say I don't have much faith in doctors like I used to) all the doctor suggested was to take three or four Ibuprofen when I'd have one of my headaches. Yeah, that wasn't very helpful in finding the cause as much as it was in just treating the symptom, and what good is that really going to do? The headaches continued through college but weren't as severe as they were in high school.
Fast forward to a couple years ago. I was having some problems with my health, but nothing terrible and I didn't really think much of it except that it was scary/annoying. I'd get short of breath, feel faint and lightheaded, nauseated, and have hot flashes come and go. This happened quite a bit, at church especially. That's why, when I think back on it, some of it may have had to do with anxiety. I did faint once after church. That was very scary, of course. It was also at this time that I noticed pretty painful muscle cramps. They would usually only occur if I bumped my arm or leg on something, which would trigger the cramps. A cramp would sometimes even be triggered if I slightly touched my arm or leg. This was strange and no where near normal.
It was ALSO during this time that I started having heart palpitations and/or chest pain. I also had tachycardia, but didn't think much of it because I had the tachycardia for quite some time before. Because of the frequent palpitations, I had many heart tests done; EKG, echocardiogram, and wearing a holter monitor for 24 hours. That came back showing nothing; everything was fine. Which was hard to believe especially since what provoked me to finally get my heart tested was a really bad bout of heart palpitations that occurred at work one night. It lasted for at least 10 or so minutes and got so bad that near the end I felt like I was going to faint because I could hardly get a good breath in.
Fast forward to New Years day, 2007. It was evening. I started feeling very ill and strange. Truthfully, it's hard to explain because I didn't feel like myself. I felt like I was floating on a cloud watching myself. I also felt dizzy and lightheaded. I went to bed but couldn't sleep because everything felt so weird. I also had to urinate frequently, which kept me up as well. I didn't sleep much that night at all. The next morning, I was still feeling ill, so I told my husband, Matt, to take me to the ER.
At the ER they took the usual blood tests and found that everything was fine except my TSH (thyroid function) was a little elevated (which means hypothyroidism). The ER doctor told me that I should probably see an endocrinologist. The ER doctor ended up diagnosing me with a sinus infection. I have no idea how he came to this conclusion as I didn't have any of the symptoms of a sinus infection except for maybe slight pressure around the eye/temple area (I also had sinus-like head pain -- lots of pressure and pain when sneezing or bending over to pick something up -- but I did not tell him about this). I was confused so I asked him if a sinus infection could be the cause of the dizziness I was having. He said, "It could be..." He gave me Levaquin (an antibiotic) for it as well as some nasal spray (which I believe was a steroid nasal spray; steroids are something you do NOT want to take if you have lyme disease) and sent me home. I went home, took the medicine, and continued to feel terrible.
That evening, I felt even worse (in hindsight, I know that I was probably having a herxheimer reaction to the antibiotic). I started having shortness of breath, heart palpitations, chest pain, and then the same dizzy and lightheaded feeling with the same floating-on-a-cloud feeling as well.
Matt took me back to the ER, which ended up being terrible because we had to wait over four hours in the waiting room before getting in to see a doctor. While in the waiting room, I continued having symptoms, as well as feeling very weak. It was hard for me to even walk to the restroom or speak as I felt so weak and strange.
When finally getting in to see the doctor, she ran some heart tests: An EKG (which I already had done in college) and a CAT scan of my chest/heart/lung area. The CAT scan was to make sure there were no blockages in my heart/lungs. That all came back normal. She also had blood taken and I was put on IV for fluid. They did this when I had come in the morning as well. The blood came back pretty much the same: I had what looked to be hypothyroidism, but was told my symptoms didn't match, as hyperthyroidism is what would cause heart palpitations and a fast pulse, etc. and not hypothyroidism. Very early the next morning, I was discharged with knowing pretty much the same as I knew earlier; that maybe hypothyroidism was causing these problems and to see an endocrinologist.
The first thing I did the next day was get an appointment with an endocrinologist. But had to wait a few weeks to get in. While playing the waiting game, I was having trouble with my eyes. Mainly in the morning, my vision would get blurry. It was hard to see the television. I just thought it was from sleep in my eyes. But it continued for a few months. I also was having problems with my balance and walking. I'd stumble a lot (especially in the morning), lose balance, almost fall, and walk into walls. Though this was strange, I really didn't think much of it. I thought it was weird, but it never really made a huge impact on me as I guess I just thought I was very clumsy. It worried Matt and he'd always stay close beside me in case I lost balance or fell. I also started having tinnitus (ringing of the ears). I also had what felt like wooshing or roaring in my head. Sometimes when it happened, the ear that was ringing at the time would lose hearing for a short while and then after the ringing, would come back. This happened on and off and in both ears.
Also, the sinus-like head pain I had been having continued. It was hard to even pick something up because bending over would cause sharp excrutiating pressure in my head. I had this weird sinus-like head pain, but I didn't have any of the other symptoms for a sinus infection. I knew I didn't have a sinus infection, so this was very strange to me.
It was around this time that I got strange tailbone pain. At first, I didn't think much of it since my husband and I had just gotten new furniture, so I thought that was the cause of my new tailbone pain. Months passed, and I still had the pain. It was so severe at times. It would hurt to sit in the same position for even a short period of time, and it got to the point that it would hurt even while laying down to sleep at night. I'd try to sleep on my side instead of on my back, but even laying on my side hurt. It got very hard to even take a ride in the car with Matt because sitting hurt so much.
In addition, my joints, particularly my knees, elbows and fingers were stiff a lot and this was completely new to me. I've never had this problem in my life before. Sometimes it got bad enough that my knees locked up upon standing and I'd have to wait a few seconds before trying to move them again. I also had some stiffness in my jaw. (I still have knee, elbow, and finger stiffness. It comes and goes. One day I may have no stiffness whatsoever and the next day it can be very bad. It's strange, but this is how lyme disease manifests.)
Something else that I noticed start during this time was what seemed to be sleep apnea. I'd wake up choking/coughing. The first couple of times it happened, I thought I had just swallowed my spit and it went down the wrong way making me wake up choking. I'd always wake up choking or coughing when it happened and my throat would be sore afterward for a while. This was very scary, so I had a sleep study scheduled, but never went as things were so hectic during this time. I am still trying to get another sleep study worked out because after a few months of waking up choking/coughing, it let up for a few months and started happening again.
I should also mention that on January 9, 2007, I started a new job. But since being ill, it was hard for me to go into work every day. I had to call off many times and it got to the point where I felt wrong for calling in so much. I proofread/edit court cases. Because my employers are extremely understanding and caring, they gave me the opportunity to work at home. I am beyond thankful for this. Otherwise, I don't know what would happen. My husband doesn't make enough alone to support us, so I'm beyond thankful to them for understanding and giving me this chance
Fast forward to my appointment with the endocrinologist. He looked at my paperwork but told me he wanted to take blood to check my TSH for himself because he said he didn't trust ER results as they are usually rushed and not always accurate. He also didn't think I had hypothyroidism from the list of symptoms I gave him since they sounded more like hyperthyroid symptoms. He did a physical exam and said I looked fine. I told him about my muscle cramps, which he then proceeded to pound on my arms and legs with his reflex hammer, which gave me terrible, terrible muscle cramps (leaving my arms very sore for a couple days afterwards), but he didn't tell me much or seem to think much of it.
A few weeks later, I came back in to see him for the results of the blood he took, and he told me that I did have hypothyroidism but it was only borderline/mild. He put me on (what he wanted to be Synthroid, but the pharmacy made a mistake so I got the generic) Levothyroxine. We made an appointment to come back in after six weeks to see how my TSH levels were at that time.
I was happy for the first time in a long time because I firmly believed that this was my problem; that hypothyroidism was what was causing me to be so ill. I read up on it and found that many of my symptoms matched (with exception to heart palpitations and tachycardia).
After taking the medicine for a while, I didn't really notice much of a change. This was disheartening because I truly believed this was what was making me feel like hell.
After the six weeks were up, I went back to see him and told him that I was still having all the same symptoms. He told me he didn't think it was the hypothyroidism causing it and that he didn't know what it could be. He did run some other tests (which was torture because as I was at home suffering, waiting what was supposed to be three weeks for the result, his staff forgot to send my blood to the lab, so it ended up taking five to six weeks instead of what was supposed to be two weeks), but those results came back normal as well.
This is when I became real gung-ho about hypothyroidism and started thinking that the symptoms were from my hypthyroidism and that I wasn't taking the correct medicine. I had read up that many people with hypothyroidism need to experiment with thyroid replacement until they find what works best for them. This made me believe that I didn't have the right medicine for me so I was continuing to have symptoms.
I forget when, but a couple weeks later, I called my endocrinologist from home and asked him if he'd be willing to change my medicine to another thyroid medication. He said no, that Synthroid works perfectly fine. It's at this time that it was brought up that I wasn't taking Synthroid, I was taking Levothyroxine. He told me he didn't want me taking that and that it was obviously a mix-up by the pharmacy. He called the pharmacy and made sure they knew I needed Synthroid. That night, I picked up the Synthroid. I was happy about this because though it really wasn't a change in medication, I thought since Synthroid was the brand name of Levothyroxine, maybe this would be the answer. Maybe the generic wasn't working for me and causing my symptoms to continue.
Synthroid didn't help either. Though I do remember the first night I took it (I started taking it that night because I wanted to take it as soon as possible in hopes that it would be my answer, my cure, and I didn't want to wait until morning), I felt really good. I felt better than I felt in a long time. And that gave me so much hope. Of course that hope was shot down and I only felt good for a day or two and then started feeling ill again. I was still gung-ho about hypothyroidism and the type of medication being important, so I continued thinking Synthroid wasn't right for me. I started thinking maybe I needed Armour Thyroid to get better (as I heard many people with hypothyroidism didn't get better until they started taking that).
I continued feeling terrible. I decided to see another doctor, just a regular family GP. I liked him. I liked his disposition. He looked at my blood tests and saw the TSH, but also noticed that my potassium was low. Low potassium can cause muscle cramps and heart palpitations, so he thought maybe this was the reasoning behind my having those. He did a physical examination. He pushed on my ribs and they were very sore. He came to the conclusion that I must have some sort of infection because of my sore ribs, and he said that the dizziness would make sense as well. But he said since it was just an infection, there's nothing we could do about it and just wait for it to pass. He told me to go home and drink lots of Gatorade and that hopefully it would help pass the infection as well as help with my potassium level. I still doubted this was just an infection but, of course, was still hopeful as I was after every appointment I went to. I was hopeful because I was so sick and tired of being sick and tired that I just wanted so badly to find an answer.
I remember how bad that appointment was though because the entire time Matt and I were sitting in his office while he was looking over my blood work, I felt like I was swaying. I felt like I was going to faint and/or black out and lose consciousness. I felt like I was there, but I also felt like I wasn't in my own body (that floating on a cloud feeling again). I remember how terrifying it was, but I also felt so out-of-it that I didn't say anything to anybody about how I felt like I was going to faint dead away. I also knew that even if I did say something about it, what would it matter? Doctors didn't know what was wrong with me, no one would be able to help me, so there was no use in it. I felt completely trapped.
Matt and I went to the store and stocked up on Gatorade (as per the doctor's instructions). I did the best I could while at the store. The thing with this disease is that symptoms change so much and come and go so quickly that one minute I could feel like death and the next minute feel better in comparison. After a month or so of just resting and drinking Gatorade continuously, I didn't really feel better. There were days I did feel better, but then they'd be followed by terrible days, so all-in-all, there wasn't really an improvement.
I went back to the family GP and this time he gave me potassium chloride to take for my low potassium levels. As usual, this didn't help either. It also didn't help with my muscle cramps or heart palpitations.
I went back to him once more after this and asked him if he'd be willing to change the type of thyroid medicine I was on (I was still on a thyroid-kick and firmly thought hypothyroidism was my problem). He told me "Stop with the thyroid. It isn't your thyroid. I'd say it's probably your 'spirit'". He told me that the only thing left that he could do for me would be to have an MRI done of my brain to see if that showed anything but otherwise, he told me it was my "spirit".
I left that appointment very upset. He basically just told me I was depressed and/or had anxiety issues. I was feeling so ill and he basically blew me off. It hurt.
I then found another endocrinologist to go to. I still wanted to change either my dose or my medication for my hypothyroidism. I didn't like this doctor at all. She was rude, argued with me, and would cut me off when I was speaking. I asked her if she'd prescribe Armour Thyroid for me and she told me bluntly, "I wouldn't give Armour Thyroid to my worst enemy." I knew most doctors disliked Armour because it's thyroid hormone from pigs. Most doctors like to go with the synthetic stuff. She did agree to taking my blood again and made sure to test for Free T3 and T4 (because that's what I wanted tested in particular). Before leaving her office, she told me I had depression and needed to see a psychiatrist. I left her office angry. First, it was my spirit and now another doctor tells me I have depression. YES, I have depression because doctors won't listen to me! I'm feeling so extremely ill and yet I'm not being listened to. I'm told that I'm healthy and fine, but I don't feel that way, not even close. I was having so many symptoms, some so varying, and doctors can sit there and tell me I'm fine???
Shortly after, my tachycardia and palpitations seemed to be getting worse. In the morning, I'd get up and my pulse would be 112/always in the 100's. That's not a normal heart rate for someone who just woke up from sleeping a full night. Then one day at work I had palpitations for five or so minutes in a row (reminded me of the time at my past job when the same thing happened).
Yes, I had tests in the past that came back fine, but I decided to see a cardiologist again just in case. The doctor did an EKG and an echocardiogram as well as the usual physical exam. He said everything was fine except one valve in my heart doesn't close tightly, which means some of the blood may leak backward through the valve. I asked him what this meant and he said it wasn't something to worry about usually. I asked him if this could be the cause of my heart palpitations or tachycardia and he said no. He told me everything looked fine, but from my symptoms he said that I could have mitral valve prolapse but the EKG did not pick it up. To help with my tachycardia and heart palpitations, he prescribed Toprol-XL.
Once again, I made an appointment with a new doctor; an environmental enlightened medicine doctor. I liked this doctor at first. I loved how he'd take his time with you and ask you many, many questions and listen and not interupt you at all. He took dozens and dozens of blood tests, some of which included vitamin/mineral levels to be tested.
During the physical examination, he made me walk a line with my eyes open and he made me walk a line with my eyes closed. I didn't do very well on either because of my poor balance (which was mentioned earlier). He also wanted me to stand on one foot. I did so-so on my left foot, but could hardly do it on my right foot without tipping over. He found this odd especially since I'm right handed. I also told him I was having weird vibrating-type feelings in my legs. All of that, including the list of symptoms I gave him (especially tinnitus, and sinus-like head pain, plus headaches), he decided I should have an MRI of my brain.
After a few weeks, the results of that came back normal. It also came back showing that my sinuses were clear (which ruled out that the head pain I'd been having was NOT due to a sinus infection).
It was during the time I was seeing this doctor that I also decided to see a psychologist. I guess I was starting to think maybe my problems were really linked to anxiety and/or depression somehow. I didn't totally believe it or even want to, but thought I might as well go to a therapist. Basically, I just used my time with her to tell her the story with my health and trouble with doctors. I only saw her for about two and a half months. Even she, after telling her I thought I had lyme disease, told me that I probably didn't have that.
I was getting so sick of everything, I decided to look up my symptoms on the Internet. And Lyme disease kept coming up. Most of my symptoms matched; I had 45 of 68 symptoms.
When I went back to my enlightened medicine doctor, he said some of the results of the blood tests he had taken showed some vitamin deficiencies. This doctor believed the vitamin deficiencies were making me as sick as I was. He put me on a ton of vitamins and was convinced this would fix all my troubles.
Of course it didn't. I continued feeling bad. I brought up to him at one visit if it was possible I had lyme disease and all he said was, "It's possible..." I thought he'd want to test me for it, but that never came up. A couple weeks later, I decided I NEEDED to be tested. I called and had to initiate everything. He wasn't there when I called, but the nurse there told me if I came in, they'd take my blood and have the blood sent.
This doctor, at least from what I know, is not a LLMD, but sends his Western Blot tests to Igenex.
After about three weeks, the test came back. IgG and IgM were both negative, and the only thing positive was band 41 IgG, ++. The CD57 was 18, which is very, very low and is an indicator of chronic Lyme/severe illness. The doctor who agreed to the test, wouldn't see me for another couple weeks to discuss the results. I wanted to have this treated as soon as possible because I read that with Lyme disease it's important to get treatment right away, so in the meantime I went to an infectious disease doctor.
The ID doctor didn't know much and it seemed like I knew just as much or MORE than he did about Lyme. He did agree to give me a couple weeks worth of Doxycycline and told me that if it was lyme, it would be cleared up after the medicine was finished. I knew this wasn't necessarily true since I had read up on Lyme and that in most cases longer treatment is needed. But I didn't care because I at least got some sort of antibiotic to start treating.
Finally, at the appointment with the dotor who took my blood for the Western Blot, he did feel that I had Lyme disease and that my immune system was so weak that it wasn't making antibodies (hence the reason none/very little would show up on Western Blot). BUT, he told me that I needed to continue taking the vitamins he had told me to take a month or two earlier and to come back and see him in a month and then he'd start treatment then. As much as I liked this doctor, he aggravated me with his constant talk of vitamins and how I was "sick" because of vitamin deficiencies. NO, all my symptoms were being caused by the Lyme and no amount of vitamins was going to help.
I knew I needed to find a lyme literate doctor. I found Lymenet thankfully and was helped in finding a LLMD.
Basically, the rest is history.
I've been on a few different meds, some have helped better than others. Right now, I'm on Doxy, Rifampin, and Biaxin. This treats Lyme and Bartonella.
Though I never did get a positive Western Blot, I later had the Fry Test done (which looks for co-infections) and got back a positive for Bartonella. None of the other co-infections came back positive. Which doesn't necessarily mean anything since, at the time the blood was taken, the bacteria/spirochetes could have been hiding in muscle tissue and not hanging out in the blood.
My LLMD and I thought I had babesia since many of my symptoms coincided with that co-infection. We weren't even thinking of Bartonella as a possibility.
I love all LLMD's for doing what they're doing and for being brave enough to treat us.
I've been treated by my LLMD for at least six months now and I am feeling better than I was in the beginning of the year. In the beginning of the year, I felt extremely ill and was afraid for my life; I felt that sick. I'm still not 100% and I still have bad days, but at least now I know what is causing this. At least I'm not in the dark about that anymore.
It's not fair for anyone to have to go through any of this and, sadly, many people do when it comes to this disease because regular doctors think it's a "hard to catch, easy to cure" disease which is a lie. It's the exact opposite. It's easy to catch and hard to cure. Thank God for LLMD's who care and who are not afraid to take a stand and step outside the guidelines and treat patients by how they are feeling, their symptoms, and if they are getting better on certain treatment, etc. Without these doctors, people with Lyme disease would have no hope. We would be turned down for treatment after the 30 days of antibiotics regular doctors prescribe us. Yet, we would still be sick and we would suffer. And Lyme would be a slow, excruciating death. And sadly it doesn't seem like these doctors would care they were killing people by denying them treatment. We need more doctors to take a stand. We need doctors to realize (as LLMD's do) the pain and fear they cause by telling someone with Lyme they are fine when, in fact, they are not.
We need doctors who have such a passion for their job that they treat patients as people and not research experiments or just another dollar sign. There are people out there every single day who are scared and sick (as I was) and don't know what's wrong with them and are treated terribly by doctors. Doctors shrug them off, possibly because they don't know what's wrong with them, and they tell them what's easiest: that they are depressed or have anxiety and need to take antidepressants.
You need to be your own advocate when it comes to your health. I learned that the hard way. Someone knows when they're not feeling right -- don't let doctors tell you otherwise. It's your body and your health. They are not God, even though they like to believe they are. They don't know you or your body better than you do.