So before I start this post about the medicine I am currently taking in my fight against a handful of Tick borne diseases, I need to tell you that I’ve been trying to write these posts for days and days. There are about 10 posts all planned in my head that I wanted to get here so that all the basic pieces of this very long story would be covered. I intended to post as many as I could as often as I could. I know that sounds like overkill, but the details are many and essential to future posts. And then, once all the basic details were covered I intend to start posting the sort of posts I always meant to. Posts about the interesting things I’ve learned, preventing tick bites and diseases, how to begin free ranging chickens in your own yard to destroy ticks, how to navigate the tricky medical system if you or a loved one get bit, how to best protect your free range chickens, and even places you should be terrified of ticks but don’t have any idea you should. Important things that are my ultimate goals. But among my many illnesses, is the terribly scary neurological Lyme disease. That makes this blog an extremely tricky thing for me right now. Neurological Lyme disease causes awful effects on each and every system. Treatment (I will eventually explain if you didn’t know this or don’t know why) is often worse than the diseases before it finally begins to make you feel better. I’m around 7 months in, give or take a month because my buggy brain can’t remember which, and its going quite well all things considered. Yet, my ability to actually function remains lower than ever before. I struggle just to manage a short shift at work, and occasionally manage to give my tick eating birds some food or water. Other than that, these days, I take my meds and try to just keep swimming. I lay on my couch and the thoughts spin in my head like a carousel nobody can stop that is turned up too high. (more on this awful fun side effect of the bugs later I promise). Managing to contain the run away thoughts in my bug addled brain, the pain caused by all my tick borne diseases and my treatment, and still write a comprehensible post is very difficult for me. I tell you this because i hope you will be patient as I try and lay out enough details for you to understand all the things I need to tell you. I have struggled to get here to fix a few things and write at least this one little post for almost 3 days. I will try and write again soon. I will try and keep this ball rolling now that I got it started. But, I may not be able to keep up. Maybe I’ll manage 3 posts tonight. Maybe I’ll manage none until 3 weeks from now. I just know I can promise I will post as often as I can. Now back to those important details. Feel free to skim through if this is too long. Once you get to pictures you’re at the procedure part, which may be all you wanted in many cases.
So, anyway, after being very ill and only getting worse for several years, and seeing over 20 physicians with no help, I finally went to see an LLMD (Lyme Literate Medical Doctor) like 8 months ago (give or take 1 or 2 months). I couldn’t be happier I did, or more grateful to my awesome folks who so generously footed that bill. It’s been a tough 8 months but so worth it. I know I am on the right path and getting better. I just wish I could feel some of the improvements. Hope is so much easier to maintain when you know you are finally at least done running in circles hoplessly lost. My LLMD immediately stopped the chaos. He finally made the spinning out of control mad carousel ride that had become my life slow down for a moment. Things are better though they are certainly still not good. (More on the LLMD later, after I find out if he prefers to be mentioned or remain anonymous. He can’t decide on that unless I give him more content so he can make an informed choice.)
So, the LLMD immediately diagnosed me clinically with babesia. This was what changed my game. For months I had tested positive for all my other TBD’s. While seeing specialist after specialist. All gave oral doxycycline for some time. All then said, despite increasingly high blood tests that those things couldnt be making me sick because the doxy didn’t work. Yet, not even the CDC who works very hard to bury the truth concerning TBD’s doesn’t claim oral doxy is only treatment in complicated cases like mine. Yet every Doctor I saw did. But my babesia was different. I had all the symptoms. Horrible drenching night sweats for over 3 years. My partner, my dog, everyone stopped sleeping with me and I couldn’t blame them because every single night I would turn into a furnace and alternately freeze, sweat, and soak the covers, the mattress, pillows, and my clothing. I had air hunger that never ended (more on that later too)and wheezing, coughing, and not getting breath ever no matter what. I had such awful muscle pain and weakness I could barely move, I had severe anemia and indicators that my blood cells were infected with something quite destructive that everyone ignored. I had awful nausea, could hardly eat and lost almost 80 pounds in the first tear of being ill. Fatigue all day and all night yet an odd, simultaneous inability to sleep too. These and more are hallmark symptoms of babesia. I’ll talk about this again in more detail later. Babesia are protozoan parasites that parasitize red blood cells in various mammalian hosts. It is a close cousin to malaria and causes malaria like symptoms like the incredibly debilitating ones I mentioned above. There are over 100 known strains of babesia worldwide. Only a couple are known to infect humans, and include Babesia Microti, Babesia Wa-1 Duncani and Babesia Divergens. testing is notoriously unreliable. Many believe only specialty labs can test for it. and many question the validity of such tests. To date, I have only been tested for Babesia Microti and only by regular labs such as Lab Corp and Albany Med) never even once by a specialty lab. And never for ay strain other than microti. Yet I had basically every symptom. The CDC reports that in 2013, there were 1,762 cases of babesiosis in 27 US states. But I sure have it and I’ve still never even once been counted in that number. It certainly could be higher. The testing and diagnosis difficulties are a serious problem that should be addressed. In my local area, in a neighboring county just across the Hudson River, the Cary Institute tested Ixodes scapularis or black legged ticks (known as the “deer ticks” in our area) for babesia. 40% tested positive for babesia. That is a huge number and I shouldn’t have been so ignored by so many physicians with so any symptoms. Even the notoriously bad at information regarding tick borne illness CDC says on their babesia page:
“In symptomatic people, babesiosis usually is diagnosed by examining blood specimens under a microscope and seeing Babesia parasites inside red blood cells.” Nobody ever manually viewed my blood and I sure was symptomatic. But anyway, all that changed when I saw the LLMD. He immediately said I should have had a clinical diagnosis for babesia years ago. It still baffles me that with almost every symptom in a known endemic area, with prime health insurance, a history of multiple known tick bites, I could be so completely ignored and dismissed. But the LLMD didn’t dismiss me, he said oh no. You have it. Absolutely. Some Lyme Literate Physicians treat any and all infections, vitamin deficiencies, etc. simultaneously; others treat the worst one each month. All approaches are better than you’d find in any IDSA Doctor. My particular LLMD uses a symptom assessment checklist every month to assess patients and treats based on the 3 worst symptoms each month. So for me that was babesia. every time. Consistently for over 5 months. I’d have some improvements, I’d back slide. I took massive amounts of really disgusting medications. Anti-malaria medicines. Mepron, the lovely liquid toxic waste colored yellow paint medicine you must consume with a healthy gross fat source twice a day along with other oral antibiotics like Azythromycin and Ceftin. For 5 months I’d have some improvement, and slide back. And for 5 months, every single monthly visit to Lyme Doc and my checklists meant Babesia was still my biggest problem. Treatment is long, hard and complicated. And full of unknown variables. Each co-infection complicates an already complicated picture more. It was going well but very slowly. And then one morning everything changed and got so much worse. I am always miserable for many hours in the morning. Waking up with my pains and stiffness and fatigue and nausea is never a good time anymore. But I woke up one morning and my hands and feet hurt so much. Like someone had been beating them with sledghammers non stop all night. Over the next few days it got worse. I can’t lift anything. I can’t open drinks or containers, its suddenly almost impossible to function at all when it was already pretty difficult.
Luckily, at this point, my second job is a truly lovely one where I get to be a nanny to a great little guy part time. It was summer. They were about to go on a trip and I had time off. I thought it would improve and I had extra rest time at just the right time. It just got worse. The pain and stiffness and weakness spread up my arms and legs. At the same time I developed spots on one arm and leg that looked like spots from Rocky Mountain Spotted Fever. Another Tick Borne disease I’ve tested positive for for years but I never had spots. I also felt more feverish than I had previously (though i’ve had a fever almost everyday for at least 3 years now) but it didn’t feel like the babesia freezing sweats and chills which hadn’t been as bad either. It was bizarre.
At my next LLMD visit I was understandably upset. My LLMD left me shocked that day. He listened to my new troubles, looked at my stiff painful hands which have had tremors for over a year now too and said I am so sorry, I have no idea what that is or how to help you with it. The ultimate defeat: even the specialist doesn’t know how to fix it. I was devastated. We discussed options. We decided to continue the oral antibiotics I’d been taking for a couple of months (a very powerful anti parasitic called flagyl with nasty side effects but it sure kills my babesia nicely) and massive doses of oral pennicillin. All these months with the LLMD, we had only been treating babesia, though we knew I had lots of others. I felt that the Rocky MTn fever spots were important and relevant to my new pain and he didn’t know if it was or not. RMSF is rare and not enough is known about it just like all TBDs. So we brainstormed together (how awesome that LLMDs let patients be part of treatment choices and decisions). Most of the TBDs we weren’t treating were theoretically all things that normally responded to oral doxycycline. (Lyme, anaplasmosis, Rocky Mountain Spotted Fever) I’d already taken so much previously with absolutely no effect. And I hate doxycycline. Numerous physicians used it as their mantra for why I couldn’t be sick with a tick borne disease even though the excuse has zero merit. I had plenty of oral doxycycline. It did nothing for me at all. I hated the stuff, but there was a good chance that the doxy didn’t work all those other times simply because the babesia was so rampant and wouldn’t let it do its job. (I also can’t absorb things like iron and vitamin d and have serious deficiencies likely caused by the babesia). So here we were with babesia hopefully more under control. But not enough under control to stop killing it either. So, he was baffled. I had an idea even though I didn’t like it. I said maybe the babesia will be under control enough that doxy will work now? Then Maybe that will help whichever infection is making me so useless and in so much more pain. He said we could try if I wanted. But that I had to keep taking my two babesia meds as well. Because babesia can’t be treated with doxy and he doesn’t think mine is gone yet by any means. I say let’s try this. Let’s kill some new bugs. So now I am taking 3 antibiotics, multiple pills, multiple times each day. I take 2 different medicines to counter act various issues massive amounts of antibiotics have caused, anti inflammatory meds and fever reducers as well. But I don’t have many options. I have to work. I have to function and for the last couple of months, I simply could not. Useless is not a state I am familiar with or comfortable with. I greatly prefer to do things myself and not ask for help. I was desperate, so I say sure, let’s try it. I pick up my new meds and realize that now, even just scheduling all these meds is almost logistically impossible. I am very good about taking probiotics 2 hours before and 2 hours after all meds to help my body do what it needs to do to kill all the bugs without losing all the good bacteria to the meds. But now there simply aren’t enough hours to space everything properly and still sleep. Let alone some meds require food and some don’t. It began to take entire days just to plan a proper schedule and take the meds and food when needed. It worked out to look like this: Wake up. Swollow 8 or 9 pills for breakfast depending on the particular day. set alarms on my phone to space the meds accordingly, Then either 6 or 7 for lunch, and an additional 8 every evening before bed. All of them powerful antibiotics and such that all carry their own side effects. My body had no idea what to do. Every system I have was a mess. But there was evidence it was working. I wanted to hang in and keep killing bugs. At my next visit to my LLMD, I didn’t have much good to report and he didn’t like what he saw at all. We discussed it again and mutually decided it was time for IV Antibiotics. So, 5 or 6 weeks ago, we completely flipped my treatment plan on its head, and I began an all out war against all my bugs simultaneously. I have to get better or I won’t be able to go to work anymore. I am much too stubborn to let some parasitic microscopic bugs have me. But I was tired of the constant pill swallowing and lack of progress. And my stomach had been such a trooper about it all but was obviously not handling it anymore at all.
IV meds are terrifying. There are two ways to do it. Either I could get a PICC line installed in my arm allowing me to do my own infusions once daily at home, or I could travel to my LLMD’s office (in my case almost 2 hours of unpleasant highway one way) daily and he could give me my IV infusion. In either scenario cost is exorbitant. Besides, I do still work a little. I simply couldn’t do option 2. Plus, I don’t even have a working vehicle. So a PICC line it was. I didn’t want it though. It’s dangerous and intimidating. All the years I’ve researched these TBD’s I’ve found a few things to be absolute truths. One is that the 2 main causes of death for Tick Borne Disease sufferers are 1) Suicide (Stop! Don’t worry. I’m simply way too stubborn to worry about this, but I suffer enough to see how this can be true) and 2) PICC lines for necessary meds that then cause a massive deadly infection nobody can stop in time. This is the trick to the line. It’s like an open super highway from my arm straight into my heart. But it is necessary as the only way to treat any bugs that have gotten in my brain. Only IV meds can cross the blood brain barrier. All evidence says the bugs have been in my brain for at least a year, possibly much longer. So it’s a good thing, this scary new treatment. But it is certainly not easy. It was further complicated because I thought I was getting a PICC line, IV meds, and discontinuing all oral medication, and I was excited about that because my stomach obviously needed a break.
I got my line put in and went to my Doctors office for my first IV treatment. The next day a nurse was scheduled to come show us how to do the treatments ourselves. The insertion of the line was hard because my veins don’t work right and they had great difficulty installing the line into my damaged collapsing vein. It was a long uncomfortable procedure and I was exhausted. At the LLMDs office, I discovered I hadn’t understood the treatment plan at all. The treatment plan was actually to continue oral flagyl to continue treating my slightly better babesia and also now add the IV rocephin which would theoretically now treat all my other TBD’s at the same time. We’re going after all the bugs with everything we’ve got basically. Bringing out the big guns. It’s working. And it’s been a crazy ride. But there is great evidence it is working. The bad news is my symptoms have not improved and I remain pretty miserable and not very functional. The good news is that after 5 weeks of this treatment, my blood counts, for the first time in at leeast 4 1/2 years were just normal at last weeks count. That has never happened before. My white cells, my platelets, my red cells, all of them are better! It’s working!!!! Now I just need the symptoms to start falling into line too. But anyway, I wanted to share how we got to this treatment and then how it works. Because if you ignore the scary part, and focus on the fact that it’s actually working? I love my PICC line. I only take 5 pills for breakfast, just 3 for lunch, and then 5 more at bedtime. Much more manageable than my previous treatment plan and so much easier for my body to deal with it this way. So, every night, I give myself an IV treatment. I know at least some of my friends are curious. I’ve even invited a few to come by they are so curious and want to watch. But it’s not a convenient hour for that. Maybe you have a PICC or are considering getting one? Maybe you just wonder how in the world it works? Either way, Here’s how my particular kind of med works, and what a treatment looks like.
In my case, a fabulous Home Infusion Company was contacted by my LLMD and set everything up for me. Insurance payments, all supplies arriving weekly, the home nursing company to come change the bandage once a week and draw blood. All taken care of with very few snafus. One of the staff members at my LLMD’s office that first day with the PICC line gave me a super helpful tip that I would want to plan my infusion as late in the day as possible so I could nap if needed as these meds cause extreme exhaustion. It’s also very important that the infusions are done as close to the same time as possible every day. This was such a helpful tip. (added bonus tip: When I start an infusion I also set a timer so I can’t sleep through it or I will if someone else isn’t on duty to wake me to finish my meds because you will get very sleepy very fast.) I decided, with the help of these tips to do infusions at 11pm each night as I work a few evenings a week and am not always sure what time I will return. In this way, I can almost always ensure I am home consistently. So finally now that relevant details have been covered, here’s how it works with a few pictures:
The infusion company arranged for all supplies to arrive right at my door. The boxes are large and full of a million little ice packs I can’t think of anything to do with as the medicine needs to remain cold while sitting in a roasting UPS truck. It comes in a rather large heavy box like this:
(incidentally if you need any white fabric ice packs I have like 300 I don’t know what to do with from my weekly boxes of meds. Suggestions for recycling them appreciated).
Everything we could possibly need was in the first couple of shipments. And fresh supplies and pre-filled self contained IV Rocephin pumps arrive each week on ice packs. There are all the bandages and dressings required, millions of alcohol wipes because infection risk is so high, Saline Flushes, heparin flushes, labs in a box for every other week blood tests to monitor organ functions done by the visiting nurse. And of course the meds. The first time we unpacked a box, my nurse wasn’t even sure what some supplies were for. For instance we laughed at the fanny pack, and thought we had no use for it. But it was in the box. The nurse soon realized that it is what comes with the little rocephin pumps so that you can do things while you’re having your treatment. I have never once worn a fanny pack until now. In fact, my youngest daughter likes to tease me and suggest I go buy her things at the grocery store with my fanny pack and my meds as often as she can. That makes me so happpy when we can maintain our ability to laugh even in adversity. But I digress, neuro-Lyme. sorry. Back to the point.
Inside the box is everything you need. I left out the 3 freezer quality silver pouches that the meds arrive in, some of the zillions of white ice packs, and the giant zip lock full of assorted other supplies. But here’s whats in the box:
So the meds are in the pump. They go in the fridge. It’s a totally awesome almost grenade shaped cool little device. Remember, I’m not a medical person. This was all new and necessary learning for me. The sick person in me hates that I need it. The dork in me thinks this little pump is pretty cool. I can explain most of the procedure. But I actually have no idea how this piece of awesomeness actually works. I also don’t know if everyone’s home infusions are so simple. The infusion nurse I was assigned actually didn’t know how to use the pump (or the fanny pack) so I can’t help but wonder if it is unusual, or a benefit of my good health insurance benefits. I simply don’t know. I also have no idea about co-pays because I haven’t seen any yet. They are coming for sure. I don’t know the details but I am so in awe of this little thing. So anyway, the pump arrives primed and ready, disposable, and requires no batteries. A pharmacist somewhere measured the meds, sets the flow rate, and ships it off in amazingly cold packaging. It’s like a small globe shaped thing with a cord. There is a hard membrane inside. Some form of plastic that shrinks as medicine flows. It also has an outer membrane that looks much like a balloon or normal IV bag. Hard to see before it deflates and I forgot to take a picture of a deflated one. To use, a patient only needs to follow the procedure, hook up the pump, move a little clip, and the medicine flows for one hour. Here’s a fresh one on top of some ice packs with the heparin and saline flushes:
At first, I expected to feel completely overwhelmed by the whole thing. I expected to just make my partner do it (he assured me ahead of time he didn’t mind and isn’t squeamish but I am usually quite squeamish). But once I had the first visit from my nurse and she explained all the stuff in the box and what we actually had to do each day, I thought I could maybe even do this myself. Shocking but true.
So, it turns out, that awesome company that set up all my logistical bits and pieces, has it all layed out in the most user friendly way possible. They give you a simple chart with all of the steps clearly explained. You remove the medicine pod one hour ahead of treatment to allow it to warm up slightly and flow at the proper rate. Then, at the scheduled time, you wash your hands. And unwrap and lay out all the items on the chart as shown:
*Sterile procedures can’t be stressed enough during these steps. A PICC is serious. It is basically a tube from your arm straight through the veins until it ends at the end of your largest vein (the Vena Cava) where it meets your heart. This is necessary to dump the meds directly into your bloodstream where they can reach over the blood brain barrier and kill those bugs other medicine can not even reach. Yet it is also extremely dangerous. Any germ, bacteria or anything that touches the end of that line has a super highway straight to your heart. If an infection gets in there, it’s all over. The infection will travel this convenient path straight to your heart and quite likely kill you before you even know you need help. It is that fast. Don’t ever skimp on washing, alcohol pads at each and every step and anything else you do to feel like you are keeping everything absolutely as clean as possible. You can’t be too careful here.*
So, once everything is clean and open and ready, you just follow the printed directions and the materials you have already layed out and you can’t possibly do it wrong in any way I have found yet.
1)Remove cap from line and swab carefully with alcohol pad.
2)without allowing end of port to touch anything, press gently and twist to connect the saline syringe to the end of the line. Gently “pump” the syringe in small amounts at a time by pressing plunger in small increments until the syringe is empty. unscrew syringe and wipe port end with alcohol.
3)Check label on pod. be sure it is your name, meds, flow rate, etc. Remove the sticker that coils the line. Leave clip attached. Unscrew cap from connector end and place on end of port. Screw tight. Unclip the little clip that holds tube shut and that is it. The medicine will flow at rate on label.
Here’s mine about halfway through a treatment. Pardon the bad selfie.
Now you get an hour long intermission. Set an alarm so you can’t miss the next part. Relax. Suck up the fanny pack craziness, clip that bad boy on, and put the pod in the pack. You may find the meds make you run to pee (I do sometimes), or you may be exhausted (I sometimes can’t stay awake). So it is best to put it away and be ready in case. running trailing the pod would likely feel awful and may upset yur line which would not feel good either. The pack is annoying but safe.) You may feel nothing at the site, or you may feel a somewhat cold sensation (I have the cold sensation always, as I do if I have an IV in the hospital. It is normal, and not bothersome) Other than fairly mild discomfort in first few days from insertion, there shouldn’t be any. If there is, you should ask your nurse or your physician right away. Durng this hour, you can do anything with the pod in the fanny pack. It just drips and does the work. As my daughter says comically, I could go buy groceries if I didn’t fall asleep in the dairy case.
You may have a different system. I can only speak for my little pods. In my case, as the medicine flows, the pod begins to shrink. In the beginning we once realized nothing was happening because the pod wasn’t shrinking or deflating. We realized we weren’t very smart and hadn’t unclipped the clip to let the medicine flow. The only way to know if its working is to watch the awesome pod begin to shrink. Watching the tube doesn’t seem to help. If flowing right, that hard plastic inside membrane we discussed? It shrinks as the medicine flows and the outer balloon like membrane simply remains on the outside. The inside shrinks. The outside gets looser. By the end, the inside will resemble a hard plastic empty tube down the center of the pod. The outer layer looks like an empty iv bag. I apologize for forgetting a picture of this.
So the alarm goes off at the end of one hour. I know the meds are done if the inner chamber also looks completely empty. Normally it is done. Occasionally, an extra 5 or 10 minutes is required to finish. This is nothing to worry about and the result of a temperature variance. It will finish soon. Now its time to wash hands again and resume the chart. Almost finished now.
4)remove medicine pod. Wipe with alcohol. Flush with saline to ensure the line is clear.
5)wipe with alcohol. Screw on yellow coded heparin syringe and flush through tube like saline. This prevents clots from forming.
6)wipe endcap and end of port and replace endcap.
That’s it. It’s finally done. This endlessly long but necessary post and this entire procedure. Finally done. Until tomorrow.
Thanks for reading and if you found this page looking for how the PICC line stuff actually works I hope this helped you and that I can soon provide you with even more content that I found hard to find when I looked for it myself. And if you just read this short book simply because you are my loved one? As always thanks for your never ending love and support. It means more than I can say.