Absence, Loss, and (Another) New Beginning

In the months that have passed since my IV antibiotic treatment ended and my PICC was line was removed, I thought many times of coming back to this space, to share how life is off treatment, and the changes I made in my life to adjust to my new-new-newest “normal.” But it’s been hard to put together neat little stories that can be nicely presented here, because this has been a very emotionally challenging time. Over the last several months, there were certainly moments of joy, fun days with family or friends, and some days without much pain. The majority of this time, though, has been something like grieving – grieving the last 2.5 years of my life which have been so much about this illness. I am grieving the person I used to be.  Lyme has taken a lot of things from me, both big and small, and after all the pills, and all the injections, and the supposed golden ticket of IV treatment, it all just added up to a lot of disappointment, and a profound sense of loss.

In an effort to push myself forward into another phase of coping with this life-changing illness, I started going to therapy, and found myself a new project to focus on. The therapy is helping me to process all that I have gone through, and figure out how to move forward into whatever is next. The new project is that I have turned my dining room into a clothing boutique (what can I say? I don’t do anything small, I guess!) – but more on that later.

I finally came back to this space, in large part because I have arrived at the next phase of my treatment. Yesteray, I met my new Lyme doctor!

Leading up to my first appointment, I was anxiety-ridden. What would this doctor be like? Would she put me on trial for my illness? Would she criticize the treatment I had spent so much time, money, and energy on? Would she insist that I needed some bizarre treatment I’ve never heard of and costs thousands? Would her bedside manner be horrible? Would she, too, throw her hands up and have no idea what to do with me?

And what if she seemed great and capable, and prescribed a new treatment that I would put all my hope into? And then I went through the horrible roller coaster of treatment again…and it didn’t work?

I wasn’t sure I felt ready to start at square one with someone new. I wasn’t sure I was ready for the side effects and herxheimer reactions again. I wasn’t sure I was ready to potentially be disappointed again.

I was scared.

I am now very pleased to report that my new doctor is a quirky delight who GAVE ME CANDY (Yes! Candy for grown-ups at the doctor’s!), and IS A LYME SURVIVOR HERSELF. She seems immensely knowledgeable and capable, and I am cautiously hopeful about what is to come.



My loot!


I won’t get too deep into treatment details just yet, but I will tell you that today I started a course of Coartem, an anti-parasitic aimed at killing Babesia, that very stubborn co-infection that afflicts so many Lymies like me. I swallowed just a half dose of them today (too scared to take it all!), and am now back in that all-too-familiar place of waiting to see how and when it will hit me. It will undoubtedly make symptoms flare, but it is anyone’s guess which ones, how much, when, and for how long.

Beyond this Babesia treatment, there is more on the horizon for me. None of it sounds fun, but all of it sounds smart, and most importantly, it gives me hope.


Still here

At the end of January one of my doctors gave me a referral for a new Lyme doctor. I have been having more downs than ups with my health for a while now, and my Lyme doc is kind of out of ideas for me. I never heard from the new doctor. I tried to call once, and they were closed.

Today I finally got my referral refaxed over, and got confirmation that it was received. They said someone would call me back to reschedule. When they called, they said the doctor has to review my referral paperwork before I can schedule an appointmeynt, so I should call back next week.

This isn’t really a big deal, it’s just another hurdle in a long line of hurdles. It’s just the way it goes when dealing with doctors.

I was struggling for a while before I went back to my doctor. Doctor gives referral, month passes, phone calls, more time passes. Finally think something is going to happen…get told to wait another week.

And how far away will the appointment be once I get to schedule it? And how many visits (to an office an hour away) will it take before we have a plan? And how long will it take before I start to see if the plan is helping?

More weeks. More months.

Sure, I’ll call back next week. I have a chronic illness with no known cure – it’s not like I’m going anywhere.

An end and a beginning


Today I had my PICC line removed. I am not Better. I’m not even little “b” better. This is incredibly disappointing, and I have been feeling very emotional about the whole thing. I’ve been sick for 2 years and 1 month.

I will continue oral antibiotics to treat babesia, and hope for the best. Hopefully, the IV antibiotics took care of the Lyme (I did feel better for a few weeks there!), and these other meds will take care of the babesia, leaving me feeling much better by the winter. But I have passed so many of these hypothetical finish lines along the way, that I am growing very weary of them.

I am once again adjusting to a new idea of what my life will look like.

Over the past few months of this IV treatment, some really positive things have happened (and continue to happen!) in my life. Events that have brought me joy, humbled me, and truly lifted me up in difficult moments. I want very much to share those happy stories with you, and I will. Soon. I promise.

Right now, I’m not having many good days. I feel sick most of the time, to varying degrees, and I’m just trying to put one foot in front of the other.

Not Just Lyme

Oof. Things have been pretty rocky since my last update. That flare-up of symptoms I was experiencing did not fade away after a few days as I have become accustomed to. Instead, it has gone on…and on… There have been brief moments of light – a couple of hours of energy after several spent resting, etc – but mostly, it has been horrible. Fatigue, ice pick headache, joint pain, neuropathy, brain fog, anxiety, drooping right side, and just to keep things interesting fevers, stiff neck, and a strange discomfort in my chest.

When Lyme makes my anxiety flare, it can feel like my heart is racing. When this happens, I take my own pulse, and typically it is normal. A couple of weeks ago, this racing heart feeling was happening quite often, and brought with it an odd sensation that I couldn’t quite identify. Was it chest pain? Was it tightness? Was the end of my PICC possibly resting against something it shouldn’t have been? Cue the chest X-ray, EKG, and every member of my health team listening very closely to my heart with a stethoscope. Fortunately, it turned out that everything with my heart and my PICC line were just fine.

Last week, I touched base with my doctor to let her know that I was still feeling very sick. I couldn’t get out of bed most days except for school drop-off/pick-up, and I had cancelled all my cognitive and physical therapy appointments because I was too sick to go. I told her about the fevers, stiff neck, and headaches. I told her I was hanging in, but just wanted her to know what was going on since I had never had a herxheimer reaction last so long. I was beginning to worry because my IV antibiotic treatment will conclude in mid-October. Feeling so much worse for so long with the end of treatment drawing near was making me feel a bit panicky. What on earth would we do next??

When my doctor got back to me, she said, “I think we got to the Babesia.”

Back in early 2015, I tested negative for co-infections, but we always knew that was not 100% dependable information, as the testing is not very accurate (I have read that only 2 strains out of an unknown number of existing strains of Babesia yield a positive test, for example). Based on my symptoms and experiences, we have assumed that I have both Babesia and Bartonella, two very common Lyme co-infections. Months ago, when I was on some combination of oral antibiotics, Bartonella symptoms had flared, meaning the drugs I was taking were getting to the infection.

Symptoms of Babesia include fever, headache, chest pain, and fatigue – all of which have been flaring for me. Now, if I wasn’t in the habit of tracking my symptoms on a daily basis, I may have only been able to tell my doctor I was feeling awful. But because I had my notes to refer to, I could pinpoint which symptoms were flaring, some of which I hadn’t experienced in many months, and pointed directly to Babesia.

Could it be that the IV rocephin has (I don’t even want to type it…….) nearly, kinda, somewhat…….maybe…….killed(???) the Lyme Disease, therefore bringing Babesia to the forefront? That could be what is going on. It all goes back to the analogy of Lyme treatment being like peeling the layers of an onion. We have peeled and peeled, and now we’ve hit Babesia.


So, with less than two weeks remaining in my IV treatment, I am beginning to take mepron, a horrifyingly neon yellow liquid, which is slightly thinner than peanut butter and tastes like soap – and dear sweet goodness, I hope it makes me feel better.

PICCing up Steam, Part 3: Line Life

Living with the PICC line has its challenges, but has gotten a lot better over time. At first, my arm was quite sore, sleeping was a bit tricky, and I was really scared of showering (it is important to keep PICC dressing completely dry to prevent infection).


Covered and (kinda sorta not really) ready for my first PICC’d shower

After a couple of weeks, the soreness subsided, and I became more confident in keeping the line dry while showering. (No mishaps!! Phew!)

An adjustment I made about a week in was to change the time of day I infuse. I was infusing in the afternoon, while my son was at summer camp, and then it would hit me like a ton of bricks in the evening, making it hard to get through dinner and bedtime routine. I decided to switch to evenings, in hopes of sleeping through the crappiness. It worked! I now start to infuse either after my son goes to bed, while my wife and I are hanging out chatting or watching tv, or I start it during my son’s bedtime, and infuse while we read stories.  It’s working out pretty well.


Lounging on the couch for a bedtime infusion

While it may sound like everything’s going swimmingly (and really, it mostly is!!), the past several weeks have also been quite hectic.

One day per week I have to wait for my visiting nurse to come and change my bandage…and I do mean wait. With a job that takes her door to door dealing with medical issues in the greater Boston area, my nurse has a little trouble pinning down her arrival time, which results in a LOT of waiting around. Once she does arrive, the dressing change process is a little unpleasant.


It feels so weird when it’s hanging out of my arm all naked!!

Sticky things need to be removed from my skin and my arm is thoroughly cleaned – while a tube is dangling out of an open wound in my arm…that travels to my heart. In addition to being uncomfortable, it can make me a little woozy to think of where the other end of that tube is!! And because the insertion point of the line is a wound, it sometimes gets a little…yucky, and needs to be cleaned more vigorously…which is how I ended up breaking out in a cold sweat and almost fainting that one time. Between the waiting, and the way I often feel after dressing changes, I always consider that one day each week to be mostly lost.

Not directly related to the PICC, but happening concurrently are my physical and cognitive therapy appointments, which happen twice weekly, and once weekly, respectively. I am so happy to have been referred for these therapies, as they are supplying me with invaluable information and tools to help rehabilitate myself physically and mentally from this illness. That said, exercising my brain and body at these appointments can be really exhausting, so the rest of my day after these appointments is often spent resting.

My last weekly appointment (for those keeping track: #4) is my supportive infusion therapy at my Lyme doctor’s office. These IVs have mega-doses of vitamins and glutathione, which help the antibiotics work better, me feel better, and my immune system stay stronger during treatment. One plus about the PICC line is that both the infusion and the blood draw I get at the same time can go right through my PICC line, saving me from needle sticks!


My IV nurse drawing my routine labs

As usual, life goes on in spite of my treatment. I have even taken this infusion show on the road to visit family. While infusing at a hotel, I came up with a hoodie hack for staying warm despite  air conditioning and carrying my medicine balloon!


Infusion fashion at a hotel

The most important news to report is that this antibiotic treatment is WORKING! It was slow going at first, but in time I started to have some very good days. At some point, I looked at my symptom notes and realized I was not having joint pain or neuropathy any more! Let me just linger on that for a moment – MY JOINT PAIN AND NEUROPATHY WERE GONE. GOOOOOOOOOOOOOOOONE!!


Feeling especially kick ass on this day

Now of course, this being Lyme treatment, nothing is straight forward. Other symptoms still persist on moderate/tough days, and with pulsing five days on, two days off, herxing can hit at any time. This week, for example, ALL my symptoms have been flaring, including that joint pain and neuropathy I thought I had said goodbye to. The lows can be tough. When my joint pain came roaring back with a vengeance, after a really good stretch of feeling pretty well, it hurt in more ways than one. It’s amazing how quickly one can forget how bad the bad days are. There were definitely some crying nights, from the pain, from the realization that the fight continues, and from the sensation of looking back on how many days of my life have been lost to this pain.

With the treatment showing great signs of working, and the herxing continuing periodically, my doctor and I have made the decision to keep the PICC line and continue IV meds for an additional 4 weeks, bringing my total to 12 weeks by the time I finish in October. I am so glad to be able to do this treatment and really hopeful about where I will be in another month.

PICCing up Steam, Part 2: A snapshot of home infusion

Every two weeks, a large box of PICC infusion goodies is shipped to me overnight. It contains everything I need to do my home infusions, and everything the visiting nurse needs for my weekly dressing changes.


Saline, and heparin, and rocephin – OH MY!

The rocephin needs to be stored frozen, and thawed before use. I infuse five night per week. Each infusion night, I take a rocephin dose out of the fridge to use, and put a frozen one in its place to thaw for the next day.

Then I gather my supplies:


Gloves, alcohol wipes, meds, and line care syringes

I attach a saline syringe to my line, pull back to check for blood return, and flush the line with saline. Then I attach the roundish balloon-y thing (<- technical & scientific term!) of rocephin to my line. And here’s the really cool part…

There is no need for an IV pole, or help from gravity to infuse my medicine! The medicine is pressure backed into the balloon, and propels itself through my line. The speed is regulated by a very small gauge tube which connect the extension on my PICC line. I can put the balloon in my pocket, or drape the line around my neck and be completely mobile while infusing. This is especially nice because it takes about an hour for all the meds to infuse. At the end, I flush the line again with saline and heparin, and I’m all done.

On days I don’t infuse, I simply flush my line with a heparin syringe to keep it free of clots.  At first, it was a little stressful doing these infusions on my own. I would forget to clamp or unclamp my line, or shoot saline across the room when trying to squeeze out the bubbles, or worry that I was somehow doing something wrong. But with time, it’s gotten very easy, and I can complete the whole process without too much thought or stress.

How I learned the truth about Chronic Lyme Disease

In September 2014, I came down with a flu-like illness. I had a high fever, body aches, extreme fatigue, and a relentless, pounding headache. With no improvement after two weeks my doctor started running tests, one of which was for Lyme Disease. The Lyme test came back positive. I was told that after a few weeks of taking antibiotics, I’d be fine.

I took the antibiotics as prescribed, and got plenty of rest and fluids as instructed, but I did not get better. My flu-like symptoms persisted. The headache was constant, and felt like a knife through my head. Ibuprofen couldn’t touch it. I felt very foggy mentally. I was often having difficulty communicating, especially when tired, and my memory was very poor. One day, I went to write a check, and couldn’t remember how. Never before in my life had I experienced this kind of cognitive difficulties.

When I brought up my concerns with my doctor, who conferred with an Infectious Disease doctor, I was instructed to wait another month to get better without further medical action. I was assured that the antibiotics I took had cured the Lyme Disease, and it may just take a little more time for my symptoms to go away. If I was still ill in a month, I could call back for a follow-up appointment. I listened to the doctors and waited. A month later, I still was not better.

I called the Infectious Disease doctor to schedule an appointment as instructed. The appointment they offered me was another month away. Weeks passed. I still was not better.

During that time, I did some of my own research about Lyme Disease. I really didn’t know anything about Lyme, and I wanted to educate myself about what was making me so sick. It didn’t take long in my research to discover the great controversy of Lyme Disease – chronic infection and long-term treatment. I found many Lyme patients’ stories about their ongoing struggles with the disease. I also found that many healthcare officials and providers claimed Chronic Lyme Disease doesn’t exist. The CDC and IDSA (Infectious Disease Society of America) both take the stance that Lyme Disease is most often cured by a short course of antibiotics, and that people with lingering problems are rare, and do not require further treatment. After falling down the internet rabbit hole of Lyme Disease information, I hadn’t a clue as to who to believe.

Were all the people with Chronic Lyme Disease nuts? Were the Lyme Literate doctors (LLMDs) I was reading about quacks? Or was it the CDC, IDSA, and Lyme deniers that were wrong? I was dumbfounded.

Throughout the first few months of my illness, I tried to put the controversy out of my mind. “I’ll get better,” I thought. “I’ll worry about chronic Lyme and LLMDs if the time comes, and it probably won’t! Maybe all those Lyme people are crazy.”

At the time I fell ill, I was sole proprietor of my own business as a postpartum doula, caring for families with newborn babies. My illness forced me to cut off care early with clients. Waiting to get better as instructed, and waiting for an appointment with the Infectious Disease doctor, the days added up…to four months. My business was, in effect, closed.

I was having some good days, but for the  most part, I had little to no improvement. I still had a persistent migraine headache. I was exhausted – prior to my illness I was never one for naps, but I was needing them regularly just to have enough energy to function at a minimal level. My brain was very foggy. I had trouble finding words in conversation. I was unable to drive on highways because I felt I couldn’t keep up cognitively with both operating the vehicle and navigating safely. The right side of my face and body was often visibly drooping and felt heavy. My neck was often stiff. I was a mess. My PCP had no answers or treatment options for me. The Infectious Disease doctor, who I hadn’t even met yet, seemed very unconvinced that I needed further medical care and saw nothing wrong with me continuing to wait and suffer for another month, on top of the four that had already passed.

I was a previously healthy 29-year-old mother whose life had come to a halt, and I desperately wanted to feel well again. I wanted to have energy to run and play with my young son again. I wanted to return to my work as a postpartum doula. I wanted my life back.

So I took a leap of faith and sought out an LLMD. I contacted ILADS (International Lyme and Associated Diseases Society) for a list of options in my area. I knew it could be costly, and I had no guarantee that I wouldn’t be going to a “quack,” but I wasn’t willing to accept the alternative of continuing to watch my life pass me by. At the end of January 2015, I had my first appointment with an LLMD.

As I got to know my LLMD and continued to educate myself independently, I began to understand where those “crazy Lyme people” were coming from.

I learned that each Lyme patient’s case is unique, and each LLMD has their own road map for treatment, which is then adjusted through trial and error based on each patient’s response and specific situation. I learned that the CDC’s denial of the need for Lyme Disease treatment beyond a short course of antibiotics has closed the minds of many doctors who refuse to listen to evidence-based treatment plans recommended by many of their colleagues, ILADS, and LLMDs around the world.

I learned that I could have a long fight ahead of me to regain my health, but that I was also more fortunate than many, as I found my way to good treatment within months of falling ill, while so many suffer through years of misdiagnoses and lack of treatment.

I learned that patients with Lyme Disease often have one or more co-infections as well, with equally debilitating symptoms, and even less information about how to treat them. I learned that Lyme bacteria can change forms, hide from antibiotics, and persist after treatment. I learned that many doctors and scientists are working tirelessly, researching and experimenting, trying to find answers for the thousands and thousands of people fighting this devastating disease.

I learned that there are success stories. That LLMDs are able to help their patients recover through long-term treatments. That it takes time, and can be very complicated, but there is plenty of evidence that long-term treatment for Lyme Disease is both needed and successful in many cases.

My LLMD was optimistic about my case from the start of my treatment. She suggested that I might be back on my feet in few months. At that point, a few more months sounded like a long time. She ran a wide variety of lab tests to get a very comprehensive view of my health and current state, and we began antibiotic treatment. I was also put on a supplement regimen to help support my immune system, repair nutrient deficiencies and lessen the severity of some of my symptoms. My LLMD follows treatment plans very closely aligned with what Lyme expert Dr. Richard Horowitz outlines in his book, Why Can’t I Get Better?

Lyme Disease is a tricky little bugger. Treating it is like peeling back layers of an onion. As some of it dies, new symptoms can come to the forefront. My migraine headaches were relieved promptly after my treatment with my LLMD began. Soon, new (classic Lyme) symptoms emerged – neuropathy (tingling / nerve pain) in my limbs, and very severe joint pain. The flu-like body aches I had back in September 2014 returned. But I would also have good days, and throughout my treatment my good days would become better. I even started to string a few good days in a row.

Now it is July 2016, twenty-two months after I spiked that fever and my life changed, and I am still fighting for my health. I have been doing everything “right” all along, and taking care of myself the best I can. My treatment has been aggressive and thorough. I am now facing the next and most aggressive phase of my treatment, which I am hopeful will yield success. From where I stand now, I look back and see what I’ve endured and what I’ve learned. I look ahead and know that even after I am “better” (there is no test that can accurately confirm a person is “cured” of Lyme Disease), I may still face Lyme-related challenges in my future, and it will take me a long time to get my body and mind back to their pre-illness state.

The number one thing I have learned for sure, is that Chronic Lyme Disease is real. I know because I have it.