We’ll Always Have August

This week marked the 3 year anniversary of the 105 degree fever that changed my life. At my last update before summer, I was getting back into treatment after a several month break, and while I was scared, I had hope that a new doctor and a new protocol could mean that I would be in a much better place by the time this anniversary rolled around. Instead, my new doctor neglected to return my phone calls (about important issues like appointment scheduling and prescription refills) and seemed to forget who I was entirely between appointments. Add the logistical issue of the office being too far away for me to get to on my own, and it wasn’t shaping up to be a good fit.

The plan from this new doctor was to do bicillin injections next. We were stuck waiting for a bit because, due to demand, they had been out of stock (from EVERYWHERE). Bicillin is an antibiotic administered via intramuscular injection (i.e. in the butt). I did these injections twice per week way back in the fall of 2015, after a year of illness. They are extremely unpleasant. The medicine is very thick, stings as it goes in, and makes uncomfortable knots under the skin. The injection site remains sore for a long time afterward. This treatment also makes symptoms flare in a big way, and in my experience, as soon as soon as the many kinds of pain started to subside from one shot, it would be time for the next.

I was open to going through this hell again because after my short course of twice-weekly injections in 2015, I had my Best Month Ever. I felt WELL for an entire month. I crashed after that month, and have continued to be very ill since then, but my new doctor said that according to the latest treatment recommendations, I needed a larger dose of the injections for a longer course to see lasting results. Under her orders, I would be doing the shots FOUR TIMES PER WEEK, for at least a month. The shots were expected to be available in the middle of the summer.

I thought I could manage the shots better now because this time I would be able to administer them myself, at home. Cutting out the travel would take some of the stress off, and she talked about some numbing spray or somesuch to help with at least the pain of the actual needle.  Those changes and the confidence that it was a good option that could bring be great results made it seem possible to undertake.

But then summer started. My son was in a camp for the first part of the summer that was only a few hours per day, and I was STRUGGLING. I was not well, and the thought of adding an intense treatment on top of my daily routine as a mom seemed really overwhelming. I began to realize that the shots would be beginning just as I was about to have vacation time with my family! My wife had a lot of time off from work in August, and we had travel planned that we were really looking forward to. With my spotty history of traveling while ill, I wasn’t too excited about doing the injections on vacay.

I decided to delay the injections until September, after our vacation, when my son would be back in school and our schedule would be more regular. Then August happened.

August was kinda great! I needed to pace myself, and get rest as always, but overall, I was feeling better in a lot of ways. I felt happy, optimistic, and many of my symptoms were mild. I was able to enjoy vacationing with my family, and it felt wonderful.

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Vacation vibes

In this time of optimism and happiness, I started to think “WHY would I want to go through those miserable injections if I feel THIS WELL without treatment???” I started to think the best next step might be more like rehabilitation. I could focus on eating well, getting back to yoga, dedicating time to my small at-home business (which I really enjoy); I could do some building up of myself rather than killing of disease.

My therapist agreed with me. People I love and trust agreed with me. I was telling anyone who would listen that I had improved over the summer, and I was going to FOCUS ON THE POSITIVE. Things were on the upswing!

Then September arrived. I was getting really excited about starting new rehab-focused routine as my son returned to school, when…the Lyme symptoms started to creep back in…and they didn’t stop.

With each passing day of September, I was feeling worse again. I was getting tired faster. The aches and pains were more frequent. The nerve pain and face droop I had told several people I wasn’t having anymore? Back in action.

I looked back at my calendar and notes, and realized I did not “improve over the summer,” as I so happily told anyone and everyone. I just had a good stretch for a few weeks in August. Maybe it was inspired by great weather, vacation vibes, and a brief respite from my worst symptoms. Maybe it could partly be credited to the short course of Babesia treatment I had in May-June. But whatever it was – it was gone.

The fallout from good days to bad ones is always tough to deal with. This time, something about the combination of my 3-year Lyme-versary, my misguided excitement at leaving treatment behind me, and the realization that yet another doctor isn’t going to work out for me has made it sting even more.

Fortunately, I already had an appointment scheduled with the doctor I call my Guardian Angel. He does not treat my Lyme Disease, but I can always count on him for support, cheer-leading, guidance, and honesty. He agreed with me that lifestyle and supportive care are important. He agreed that bicillin injections aren’t to be taken lightly, and I am right to wonder if the benefits would outweigh the risks of them for me at this time – even sharing anecdotally that he has seen many patients report only temporary improvement from them. So at three years in – right back where I began. Still sick. No doctor. No treatment plan. No answers.

Dr. GA offered me another Lyme doctor referral for a second opinion. He agreed with me that someone needed to help me decide what the best next steps for my quality of life are. And he understood that this last doctor wasn’t the person who I felt could do that. He reminded me that this disease SUCKS, and so much is still unknown. That I am justified in being tired, frustrated, and confused, and that his door is always open. (See why I love him?)

So I am trying to take care of myself. I am trying to be patient and keep an open mind. I am already dreading having to give my revised update to everyone I told prematurely that I was doing better.

Another year. Another doctor. Another discovery of a whole new combination of emotions I never knew existed before chronic illness.

But August? August was pretty great.

 

 

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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.

 

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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

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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

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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.

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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).

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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.

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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.

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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!

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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!

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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!!

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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.

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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:

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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…

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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.