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.

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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.

For my next trick, a PICC…and a fight

Where’s my Lymie Achievement Badge? I am officially in an insurance battle.

Since my last update, my doctor has decided it is time for me to get a PICC line and receive intravenous antibiotic treatment. I have been debilitated by Lyme Disease for 21 months. My progress has stalled (again). I am still experiencing neurological symptoms. I have been on MANY different oral antibiotics, tried injected antibiotics, and pulsed oral antibiotics. It’s time to step up our game.

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PICC line: a visual aide!

I am to get the PICC line as soon as possible, and have it for 8 weeks, during which I will administer my own IV antibiotics (after being taught by a visiting nurse) four days per week. PICC lines must be kept dry, so I will need a special cover for the shower, and swimming probably isn’t worth the risk/hassle.

My insurance company at first seemed like they would cover 4 weeks of treatment, but has since decreed that the treatment is not medically necessary, and are denying to cover it at all. Not a single cent. Without insurance coverage, this treatment will cost a minimum of $3,000. Our out of pocket Lyme spending total at this point, pre-PICC is $10,000. So you bet your bippy I’m going to fight.

For people with persistent or chronic Lyme Disease like me – especially with neurological issues – IV antibiotic treatment can help you really get over the hump and start to fell well again. I am very fortunate to have found my way to the Dean Center and received a referral for a PET scan of my brain. My scan results are in, and show that I have hypometabolism in my temporal lobes.

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PET scan day! I got injected with radioactive material, wrapped up like a mummy, and lived to treat myself with a yummy snack!

Hypometabolism cannot be detected by an MRI. It tends to show up in Lyme patients with neurological issues who are lucky enough to get a PET scan (which are not as readily accessible as MRIs). Hypometabolism in the temporal lobes accounts for short-term memory loss, which has been a major struggle for me throughout my illness. The bad news is, hypometabolism has been found to be a precursor for Alzheimer’s. The good news is, the Dean Center has had some success eradicating the hypometabolism in Lyme patients with IV antibiotics.

As I type this, my PET scan results are being sent to my insurance company as proof that a PICC line and IV antibiotics are medically necessary. I’m not sure I can fully exhale until I hear back. If protecting my brain, and preventing Alzheimer’s doesn’t count as medical necessity, then what in the fresh hell does?