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?

P-p-p-pulse it

I’ve been back on antibiotics for about two months now. I started out with daily rifampin and azithromycin. A month ago, due to an interaction issue, we switched out the zith for minocycline. My doctor conferred with the lead doctor at the practice about my case and decided that if I felt ready to, I should switch to pulsing both the rifampin and minocycline. They recommended taking both antibiotics for two weeks, then take a break for a week, then repeat. I have mentioned here before that research has shown pulsing antibiotics to be very helpful in treating Lyme. Part of the reason Lyme Disease is so difficult to eradicate is its ability to linger in dormant persister cells. By pulsing antibiotics, you sort of trick the persister cells into thinking the antibiotics are gone, so they “wake up” or  reactivate, and just as they do, BAM – more antibiotics! It makes good sense, has done well in lab tests, and anecdotally, has helped many patients.

In theory, my doctor also sees it as a way to continue my treatment while giving me some “breaks.” In practice, it sounds to me like a herxheimer rollercoaster on a loop, as each time I resume antibiotics, I can expect a flare in symptoms to follow.

In addition to the antibiotic pulsing schedule, I am doing biweekly IV therapy, with just a couple of key ingredients to keep cost down. One of those is glutathione, which is sometimes used in treating diabetes and Parkinson’s, and also to help lessen the negative side effects of chemotherapy. Less items in the IV means not only less cost, but less time in the chair. My old IVs took a good two hours or so to drip, this one takes about 45mins to an hour.

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IV, blood work, cat nap – the recliners are pretty sweet

Regular blood tests to monitor my progress and keep an eye on things like kidney, liver, and adrenal function (all of which could be impacted by Lyme and/or antibiotic use), continue to be important.

Also continuing are the necessary supplements and vitamins to help strengthen my immune system and lessen some of my bothersome symptoms. I am also taking an enzyme that functions as a biofilm buster – biofilm being the protective coating that can keep antibiotics from getting to Lyme bacteria. This enzyme needs to be taken away from food. Probiotics need to be taken away from antibiotics. Another immune boosting supplement needs to be taken first thing in the morning. All this is to say that I am now (again) on a schedule of taking pills of one sort or another at 6 different times of day. Over the last several months, I was able to pare down to 4 times per day which was much simpler, but this current protocol just has too many can’t-take-that-with-this restrictions, so I dusted off my FOURTH pill sorter and am back to six times per day.

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Here’s a photo from March 2015 when I first went to a 6 times daily schedule. I had since retired one of the blue/yellow containers, but it’s now back in action!

This past week was my first “off” in the pulsing schedule. It was nice to have a few less pills to take, and was a bit easier on my stomach. I also felt somewhat better overall than I have the past few months. I had one very good day, and the rest were in the realm of okay, with many symptoms not bothering me too much until the evenings, which always tend to tough.

So with one “off” week under my belt, it’s time to go back on the antibiotics. I’m mentally bracing myself for a rough week of herxheimer reactions, but hoping for the best!

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Down the hatch!