Refuse to sink - My journey battling Lyme disease

At the end of December, I always take some time to contemplate the past year. I can say for sure, this was one of the most difficult years of my life, and yet a year of growth for me in many ways. In June, after 3 years of symptoms, doctor's appointments and blood work, I finally received my diagnosis: chronic Lyme disease, tick relapsing fever, Bartonella & Babesia. I also was diagnosed with hypothyroidism and adrenal fatigue. My health was the focus of my entire year. I started treatment, which was extremely difficult. I had days of extreme anxiety and depression, bone-crushing fatigue, painful joints and muscles, headaches, etc. I struggled to make it through some days. By the time I had been in treatment for a couple of months, I barely recognized myself. I became more withdrawn. I no longer had the desire to do the things I loved since doing them would mean more pain. It was a year of recognizing and submitting to the things I had no control over, in order to do what...

Tonight I had one of those bouts of crying because I'm just so sick of being sick. This has been a long stretch of feeling terrible...at least 6 weeks. I don't have a lot of pain, but I just feel like crap. No motivation, lots of anxiety & depression. I don't want to leave the house, not finding joy in the things that usually make me happy. I feel like a sub-par version of myself. I'm hoping good days are coming soon, but even when I'm feeling good, the whole time I just feel like I am waiting for the other shoe to drop. Because it never lasts. This last time I was feeling good lasted almost two months. I really had thought I'd turned a corner and that the worst was over. I feel so disappointed, and stupid for believing things could be getting better.  Christmas went really well, but I felt awful the whole day. I had a throbbing headache, chills, all over unwell feeling. I wasn't going to let it ruin the day, and I didn't. My kids had a great time...

I'm back in one of those dark valleys. It's very frustrating, 27 weeks into treatment and though I see small improvements, for the most part I don't feel any better than I did before I started treatment. I am having less pain, but some of my other symptoms have been flaring. I've been having anxiety again, which is only exasperated by some of my other symptoms - skipped heartbeats and the sensation that my throat is closing up. Lyme has caused so many other "separate" health issues for me like adrenal fatigue, hypothyroidism and reactivated EBV, that it's hard to not be anxious that each new symptom could be something totally new and terrifying. I've been having the skipped heartbeats every time I exercise (when my HR hits 150 bpm) ever since I've been sick. I decided to try a good quality magnesium supplement as many people have said it helps; instead, it made them worse! The day I took it I got over a dozen skipped beats. It's really a terr...

A few weeks ago my husband received a phone call from our doctor saying that he is positive for Lyme through IGeneX lab. This is not a surprise. He was diagnosed 15 years ago after a very high fever and bells palsy, and was treated with the standard 28 day course of antibiotics. About 6 years ago, he saw a Lyme doctor because he was having joint pain in his knees. He felt better after another course of antibiotics, but it wasn't long enough. I have to say, he had a lot of positive bands on the western blot - he was even CDC positive. That man has an iron immune system so I think he will do well in treatment. He is treating for Candida right now. I wanted to get him to his full dose of Nystatin before we add Lyme treatment since he has been herxing from the nystatin killing the candida. He has been sugar free since the end of October, and he is doing awesome. He's lost 22 pounds!!! I'm proud that he's been able to stick with it since sugar has always been his weakness....

I have been treating for 24 weeks: 24 weeks with Ceftin 22 weeks with rifampin 18 weeks with tinidazole Symptoms that have improved: Headaches are happening less and less  Insomnia. I've been sleeping much better  Joint pain has quieted down quite a bit. I'm still having occasional pain in one or two fingers, and sometimes one of my knees Bartonella foot pain continues to lessen.  Brain fog is pretty much completely gone. I'm not having such a difficult time coming up with words or spelling and I'm not quite as forgetful.  Overall, my energy has continued to improve My hair isn't falling out anymore! I got a haircut and my hair is looking much more healthy Depression & anxiety has improved GI problems aren't as bad. I still get some  This month was the FIRST MONTH in 2.5 years that I did not have extreme ovulation pain, which is great. I'm not sure if it's due to Lyme treatment or my iodine supplementation but that was a nice surpris...

I have been in treatment for 20 weeks: 20 weeks with Ceftin 18 weeks with Rifampin 14 weeks with Tinidazole  3 weeks with Teasel root Symptoms that have improved: Insomnia. I used to get a week of insomnia every month or so, but now I may get one or two days here and there. Pins & needles is at the point of happening only a couple times a week, whereas it used to happen several times a day.   Headaches - I've only had a few all month. Bartonella foot pain is happening much less often. Joint pain and stiffness has improved a lot.  I'm not having the intense muscle burning I used to get upon doing any sort of physical activity, and not as much muscle pain all-around. It's been a full month without anxiety and depression! Brain fog is much less, and I'm not having as much trouble recalling words. Throat sensations aren't as bad. I'm beginning to believe it's due to lymph nodes being swollen.  Babesia symptoms are improving Fatigue has got...

It's been almost a month of feeling somewhat normal. I find myself counting the days, and praying I don't relapse. I'm hoping the worst of treatment is done with, and I'm starting to come out on the other side. I still have a long way to go, but not feeling like death every day is a start. Being sick has caused a dramatic shift in perspective. I am finding joy in the simplest of things. Just being able to be pain-free for any amount of time during the day is a gift. It's happening more and more. I'm so hopeful but also cautious. As I mentioned before, my husband is on a candida diet. It's going really well. The first 3 days were so hard for him, he had a constant headache and was so irritable. He's doing better now that he is getting over the sugar withdrawal, but soon he'll be starting Nystatin and likely dealing with candida die-off. One day at a time. It puts a little extra pressure on me to make sure I am sending him to work with healthy, sug...

Today both Justin & I had an appointment with my LLMD. Her office is about 1 1/2 hours away, but sometimes there's traffic so we left 2 hours before my scheduled appointment. Since, we didn't have a babysitter, we brought all 4 of the kids with us. This was the first time seeing my doctor since May 4th, when I had the IGeneX testing done, so today was my first appointment since my diagnosis. She decided to keep my antibiotic protocol the same, since I am finally seeing results. She agreed that teasel root is good to be taking, and adding in the Samara Herbs Lyme mix is a good idea too. She told me the next time I have that problem where it feels like my throat is swelling, let her know and she'll order a thyroid ultrasound at a local hospital to check and see if it is, in fact, my thyroid. Justin's appointment was a bit stressful for him. They decided he should have IGeneX testing done, which was $1800. We DO NOT have that money, we're praying insurance will...

It's been a few weeks since I have sat down to write. I've actually been feeling better. It's like coming out of a coma, after those 3 horrendous weeks of pain, anxiety & depression to where I am now. I feel normal now, back to being the grateful, positive person I know I am. When I was down, life was dark. I couldn't even find the joy in the things I normally enjoy doing. I felt like life was a monotone grey. It's the hardest thing to explain, unless you've experienced it yourself. Yesterday, we took the kids to the apple orchard to pick apples and get pumpkins. Then we carved out pumpkins outside - it was over 70 degrees! - and enjoyed a leisurely afternoon together. It was much-needed. We originally were going to go to New Hampshire for the weekend, but I'm glad we didn't. We also had invitations to a few gatherings, but I knew mentally I couldn't do it. Sometimes we just need time to recharge as a family. I've been taking teasel ro...

I read something today, and I've been going over it in my head all day. It was an article titled "Grieve your losses from Lyme, and then persevere." (You can read it here ) The article itself was great, the woman who wrote it is, of course, a fellow Lyme warrior. With this disease (or any disease, I imagine) it feels like a treasure when you find someone you know understands what you're going through. Whether in real life, online or through the written word.  Anyway, the part of the article that I've been mulling over is this:  "Only recently have I been able to actually grieve the losses I have suffered. The intensity of the loss of my former life sometimes feels really hard to bear. I had to leave it behind without saying goodbye, instead looking at myself like a research project. Eventually, I had to face the fact that the life I used to have was simply not coming back." I read that and instantly became angry.  No. No!  I thought to myself.  I ...

I have been in treatment for 16 weeks: 16 weeks with Ceftin 14 weeks with Rifampin 10 weeks with Tinidazole   Symptoms that have improved: Joint pain hasn't been as often and persistent as it used to be, but it's still a there, sometimes daily. Insomnia, I continue to get less nights of no sleep, although they're still happening. Pins & needles continues to happen less. It used to be every time I sat down, I 'd get it in my feet, but now maybe once daily, or even just a few times a week. Twitching still continues but less than before.  Headaches continue to occur less. Exercise tolerance continues to be about the same as last month, still consider it an improvement. Bartonella foot pain is becoming less intense Symptoms that have worsened/relapsed/continued:  Throat sensations still happening, and I have yet to find a cause.  GI problems continue, but haven't worsened since last month. Emotional symptoms hit a new high last week. I wa...

Sometimes I wonder how much worse it'll get before I start to get better. Actually, that's a lie; I don't wonder that sometimes, I wonder that daily. Emotional symptoms have been hitting hard. Yesterday was one of the worst days for it that I've ever had. I was either anxious and crying, or feeling like a zombie - emotionless with no motivation whatsoever. My husband, what a patient man. He sat with me while I cried, let me talk it all out, and he just listened. Afterward, he made dinner so I could get out of the house. On the way home, I broke out in sobs for absolutely no reason. My anxiety and panic has been bad, I constantly feel like I'm in flight mode, with a pit in my stomach that doesn't seem to leave no matter what I do. Gasping for air all day (air hunger, babesia symptom) sure as hell doesn't help. I feel like a mess. I feel overwhelmed. Can feeling like this be a part of healing? I wish I knew.

This has become my mantra. Less than a month ago I wrote the post titled " Progress ". In it, I talked about how I was having two good weeks, and I said, "I feel I may be turning a corner, but I'm scared to get my hopes up. Lyme has a way of doing that to you - knocking you down when you have just gotten your feet under you." My fear proved to be warranted, since soon after I started feeling terrible again. Bad days are terrible, but bad weeks are even worse, because they really wear down your mental state. My joints and hands have been hurting again, although the joints have been worse before. Some days I am alternating between having hot flashes and cold flashes. I have this overall unwell feeling - like when you're sick, and you know you are, but you can't pinpoint exactly "why" you feel that way. My neuro symptoms have been kicking up, which is discouraging since they had previously been getting better. I alternate between being anxio...

One of the most often expressed problems amongst Lyme sufferers is loneliness. And it makes sense. Most of us have been turned away from the doctors we trusted. Friends and family write you off, claim you're making it all up. Spouses become fed up and leave. I count myself blessed to have a husband who has been supportive. But there was a time, when I hadn't yet received a diagnosis, that he had asked me if I thought maybe I was a hypochondriac. And you know, I couldn't blame him. After being sick for 3 years, I cannot count how many times I questioned my own sanity. When doctors tell you that you "just have anxiety," you begin to doubt and second-guess yourself. It's only natural.  Having a chronic illness, especially one as controversial as Lyme, doesn't warrant casseroles. No one comes to your house to watch your kids so you can have a break. There are no cards, no money raising, no phone calls. You just don't get the support others ...

Saturday I had the opportunity to attend the Central Mass Lyme Conference. I'm grateful that it happened to be so local to me (45 minutes away) and was so inexpensive ($10). For each hour, there were several speakers, so unfortunately I wasn't able to see everyone I would have liked to see, but I still learned a lot. I also got to spend the day with a new friend I met, who is also battling Lyme and happens to live on the same road as me. Small world! I was able to see Lori Dennis, author of Lyme Madness , discuss the politics of Lyme and her passion that has come from helping her son battle Lyme for the last five years. During the Q & A at the end, I quickly came to realize I was in a room full of people just as angry as I was. Most of them had Lyme themselves, or loved someone suffering from it. It honestly felt encouraging to be in the same room as even just a few of the thousands of people fighting against this. With an illness as lonely and isolating as Lyme can be...

A funny thing happened the other day. I was standing in my kitchen, and I suddenly said to myself, "wow...I feel good." It sounds insignificant but it is quite the contrary. Anyone dealing with Lyme will tell you that "feeling good" is something they will do anything to achieve. For the last 3 weeks, I've been able to go to my Pound class without incident, and I have more energy. My bout of insomnia that began stopped abruptly. I had one bad night of sleep and since then, have been sleeping okay. My joint pain hasn't been occurring daily, thankfully. The eye twitching has lessened. I've definitely had some off days but the good has outnumbered them lately. I feel I may be turning a corner, but I'm scared to get my hopes up. Lyme has a way of doing that to you - knocking you down when you have just gotten your feet under you. It's not abnormal for me to have a few good weeks, so I'm not banking on it, but either way, I'm thankful for any i...

I have been in treatment for 12 weeks: 12 weeks with Ceftin 10 weeks with Rifampin 6 weeks with Tinidazole   5 weeks with A-bab I also began Samsara Herbs Lyme mix a few days ago. Symptoms that have improved: Air hunger, due to Babesia, is still present (on and off) but isn't nearly as severe as it used to be. It's only a minor annoyance now. I have upped my A-bab dosage to 20 drops twice a day.  Joint pain (yay!) It has let up for the last two weeks. Could be just a temporary reprieve, but I'll take it.  Fatigue. I've been able to wake up and get going with my day and have more energy. Insomnia. I get cyclic insomnia, and I thought it was beginning again (usually comes for a week at a time) but I only had one night of bad sleep and then went back to sleeping fine.  Pins & needles continues to happen less. Twitching, which has been driving me nuts for months, is finally letting up. It still happens, but usually just in the evening when I'm tired, and...

Yesterday I introduced another player to my treatment protocol, Samsara Herbs Lyme formula. It has several herbs used in herbal protocols (such as Buhner) plus Stevia. I'm starting slow with 1/8 tsp mixed in water. The taste isn't as bad as people had me thinking. Compared to A-bab, it's practically a treat.  The week has been up & down. I would say, I mostly felt okay. I'm still having a reprieve of my joint pain except for a bit here and there. Last night started another round of insomnia. It comes in cycles; I'll have insomnia for a week (mostly just can't fall asleep, but I'm tired and exhausted) and then I'll get a few weeks of sleeping like a dead person. I've tried melatonin, it makes me even more tired, but it's like there's a switch that won't allow me to actually fall asleep. I've learned to just deal with it, because I know eventually the cycle will end and I'll be back to sleeping again.  My throat iss...

Sunday we went for a bike ride as a family. My husband loves mountain biking and really wants me to start doing it with him. It was a bit crazy - the two of us, my husband pulling a trailer with our youngest, two boys on bikes with training wheels and our oldest on her own bike. But we had fun. I forgot how much I enjoy biking. I went down a hill and got a little too confident and decided to try to go down a steep, narrow embankment (made entirely of loose dirt) because I'm so cool I can't just follow the trail. Needless to say, I ate it good. I landed on my side and woke up Monday with two large bruises and pain over the entire right side of my body. It was still fun, though, even though our oldest daughter was grumpy and scowling in the above picture. (She's a bit dramatic!) Last night I felt well enough to go to Pound class at the gym. My joint pain has been more minimal, which is always a welcome relief. I don't know how long it will last but I'll take it....

My main reason for keeping this blog is to keep track of my treatment. It's a part of my journey that isn't necessarily fun, but it's vital. I want to have a good record so I can look back on it later. I'm going to start doing a treatment progress post once a month. Since I'm over a week into my third month of treatment, this post is a overdue. I have been in treatment for 10 weeks with the following: Ceftin, Rifampin, Tinidazole & A-Bab. Symptoms that have improved: GI issues are virtually gone. I was constantly having stomach issues over the last 3 years, but after starting antibiotic treatment they have gone away. The only time I have had problems is when my Bartonella symptoms flared when I was sick with a cold. This is a good thing because I was worried I wouldn't be able to tolerate abx due to my stomach problems. Thankful for probiotics! Recurring sore throat only happens occasionally now. Air hunger has been gone since I started Byron White...

I've been doing some soul searching. I've written before about how important positivity is, and being in the right mental state can make or break your treatment. It's so easy to focus on the negatives when daily, you are faced with the pain and symptoms that constantly remind you that your life is not the same as it once was. It's so present, with me all the time. But I am realizing that I cannot allow these diseases to define me. Having a chronic illness has taught me invaluable lessons. It has taught me to never take my health for granted. It has taught me to take care of my body and pay special attention to what goes in it. It has taught me greater appreciation for the important things in life. It has showed me who my true friends are. It has taught me to be my own advocate. I need more positivity in my life. On my good days, it's easy to be positive and upbeat. I start to believe I may be turning a corner, until my legs get pulled out from under me again....

If you've been told chronic Lyme doesn't exist... If you've been told Lyme isn't in your state... If you've been told your positive test was a "false positive"... You've been lied to. The anger has been building inside me for months. I've started writing this post several times, only to stop because I've become so worked up I couldn't write coherently. Once I get my frustrations under control, another story surfaces where a doctor has brushed off someone suffering from the serious symptoms of Lyme disease and it's co-infections. Or a news story airs, and I think, "I'm so glad they're bringing awareness" just to realize they are spewing more lies, lies the defy the truth thousands, likely even millions of people are experiencing - including myself. Before I even received my official diagnosis, I promised myself I would do whatever I could to help others avoid what I have been through. I've always believed...

I'm in the midst of an anxiety & depression fog. Emotional symptoms are quite common with Bartonella; everything from anxiety to rage and everything in between. Typically they come on suddenly with no warning. Yesterday afternoon was when it hit, and I have been struggling ever since. It doesn't matter if you know  they are a symptom or not, they are still real emotions and affect you in the same way. I've been dealing with a lot of anxiety with a touch of depression. I just want to sit and cry. It doesn't help that having all these health issues is cause for concern as it is, never mind when the Bart-induced anxiety kicks in. I feel overwhelmed and hopeless. I feel like I will never be healed. I feel like I am trapped and no one can help me. This is a completely 180 from how I felt only two days ago. I took my kids to the fair, and besides some joint pain, I felt pretty normal. It just goes to show how quickly things can change. What causes the most frustration f...

Do you ever feel like you are watching everyone else live life? I feel like that a lot lately. Social media seems to be a grand montage of everything I am missing out on. My friends seem to rarely invite me and the kids to do things with them, and sometimes I can't blame them - I do have to say no more than I'd like to. Why invite someone you know will likely not be able to even come? Part of me wants to stay home all the time, and part of me feels lonely and wishes I were invited out more. It's a strange phenomenon that I've been dealing with since I became sick. It's kind of like that symptom of depression - you don't enjoy the things you normally love to do. I think, for me, the things that I can do, and normally enjoy, just don't cut it. Because it's not enough for me. I want to be able to do all of it again. As much as I hate to admit it, my nature is of the "all or nothing" kind. Sometimes I just have to take a break from social media....

Today was fairly uneventful. We stayed home from a birthday party because the kids have the remains of that cold our family passed around. I don't want to be "that" mom that brings my sick kids to people's houses. I hate that. I had so much to catch up with around the house anyway, since I was sick and out of commission for most of the week. This is my third weekend on the cyst buster, Tinidazole (generic for Tindamax) The purpose of the cyst buster is to bust the cysts that the Lyme spirochetes form to hide from the antibiotics. Once Tinidazole busts them, the other antibiotics I am on can kill the bacteria. I just love the idea of those damn spirochetes being slaughtered inside my body.  Bartonella isn't giving in without a fight, I can tell you that. My eyes have been twitching almost non-stop all week. It's really beginning to drive me mad. My feet have been throbbing and I'm still dealing with brain fog and strange headaches. I woke up this mo...

I used to look forward to having coffee in the morning. So much so, that I once told my husband, "I'm so excited to go to bed, because it means that when I wake up, I get to have coffee." Yeah, when you're an adult, sometimes the smallest things make you giddy. Despite my love for it, coffee does not love me back. It's a sad truth that I have come to accept. The "treat" I now look forward to is my daily fruit smoothie. Okay, the one pictured was an extra treat because it had coconut whipped cream on top. Typically, I try to avoid adding sugar. I'm trying to cut it out entirely, because it's notoriously inflammatory, but once in a while I cave a little.  I have this nifty Ninja single-serve blender, which was a gift from a good friend. I LOVE the thing. You put all the ingredients into the cup, attach the blades, stick it on the machine, and when it's done, you unscrew the blades and replace it with a top. You drink right out of...

A different version of the Destiny's Child song. Ha.  I've been in treatment for almost 2 months now. Surprisingly, I've tolerated the antibiotics very well. I'd heard enough horror stories of antibiotics wrecking people's stomachs and making them feel terrible to make me doubt starting treatment. But that's the thing about Lyme - treatment isn't one-size-fits-all. There are so many variables.  I haven't had any severe herxheimer reactions, yet. (Knock on wood) I have had a lot more muscle twitching, especially around my eyes. I believe facial twitching comes courtesy of Bartonella. I've also had a few days of insane, walking dead type fatigue. I have four kids, and none of them slept through the night until they were over 12 months old. And I have never felt fatigue like this. Some people describe it as bone-crushing. I could barely even hold my head up. The burbur-pinella drops cut the fatigue in half, so I figure it was a minor herx. I ...

The worst part of Lyme is how much I've had to give up because of it. I have been determined to not allow Lyme to define me, however, it's hard to ignore it and live my life when it affects me every single day. I love to garden, but my vegetable garden has suffered this year because I physically cannot weed and stay on top of things. When I spend even a few minutes weeding, my hands become so painful and stiff. On really bad days, I can't even cook dinner because of how much they hurt. I was continuing to go to the gym 2-3 days a week, but I had to stop running (as I mentioned in a previous post) and I had to stop weight lifting as well, because I am not only not gaining muscle, but find my muscles are even more weak in the days following. I have missed a lot of my favorite fitness class ever, Pound, because of pain and fatigue. I've noticed lately when I go, I have strange, intense knee pain afterward, no matter how I modify the moves. Sometimes when I go, I am so...

The diagnosis is half the battle. The other half is treatment. The difficulty about treating for Lyme is there is not a one-size-fits all treatment plan. Some people do well on antibiotics, some only herbals, some a mixture of several kinds of medicine. Another potential problem in treating Lyme is the importance of targeting each form of the bacteria. They can form into cyst and can form biofilms in order to protect themselves from antibiotics. For this reason, doctors usually choose a multi-layer antibiotic regimen. The three forms of Lyme disease are: Cell-Wall Cystic Intracellular Honorable mention to biofilm, which needs to be targeted separately, but is not a true form a Lyme...more like a barrier. All four of these must be targeted in order to achieve remission. In the book "How Can I get Better?" by Dr. Horowitz, there is a helpful table on page 81 that shows the antibiotic & medication options for targeting each different form. My doctor has me on...