Part 1… Treatment Update from California

As you know my current predicament with Chronic Lyme Disease has brought me back to California earlier this year (March 2015) and I can’t believe I am still here! Yes thats right, just over 6 months in this sunny side of the world. It is still very surreal and sometimes I literally sit and say out loud ‘I am actually in California’! It has been a long trip, far longer than anticipated and it gets lonely here being thousands of miles from family and friends. I am homesick without question, and feel very much out of my comfort zone, but I have to just take one day at a time and Skype everyone back home ofter to ensure I don’t completely loose the plot!

My body feels massively overwhelmed with its current ‘issues’, and trust me there are a lot, like more issues than Vogue! It is a challenge to treat so many problems at any great speed. Things have to be addressed layer by layer and with such detail. Antibiotic treatment was really making great changes in my body, my energy levels and clarity of thought was improving and both the Doctor and I felt as if progress was consistent and the levels of infections were decreasing. Then bang! Another surprise spanner in the works… A virus! In mid June I had a 3 day bout of extra symptoms on top of my usual ever growing list. At first I was unsure if it was a herxheimer reaction to my medication which was treating the infections or a toxic build up from the die off, as this can be an ongoing problem for me and puts strain on my organs. As the following week passed the Doctor had to take me off my current antibiotic medication as my body needed to change focus to fighting the virus as this was only going to slow treatment down or cause complications if it continued. I felt disheartened at this and it felt like another ‘1 step forward 3 steps back’, a bit like a cha cha cha without the excitement and grace! It is unsure how the virus was transmitted. It could have been through something as simple as taking the bus to the medical clinic as I have such a suppressed immune system, but we now feel it was more likely from a mosquito. I cover myself in insect repellant daily, but obviously I was a tasty target for this particular flying beast. It was a real reminder that things can change in an instance and no matter how vigilant you are sometimes it is just avoidable. Over the 2 months that followed, things started to go down hill. It felt like the virus had really taken hold of my body and this was this causing increased levels of pain throughout, which were escalating rapidly . In addition the reduction of treatment for my other bacterial infections meant that these opportunistic bugs were thriving, not exactly the situation I was hoping for!

In mid August, pain reached new heights and I couldn’t get the level of pain under control. The pressure in my head was unbearable, I had a fluctuating temperature, vomiting, face palsy, tingling and numbness down one side of my body and dizziness. I felt severely exhausted although I was literally continually horizontal, sleeping the hours away! On the 14th August, I had no choice but to make my way to the emergency room, I was sure I couldn’t continue like this over night with symptoms showing no signs of slowing down, tears were strolling down my cheeks.

Waiting it out in the ER with a warm blanket and a sick bucket.

Waiting it out in the ER with a warm blanket and a sick bucket.

I made my way to a local hospital and after a triage assessment, blood tests and a 5 hour wait I was eventually seen my the main consultant doctor on duty. I was immediately put on fluids to rehydrate from all the vomiting and anti-emetics to stop the nausea and sickness. I was given shots of pain medication and within the hour I felt completely wiped out and on another planet! The medication made me feel almost drunk, but without that happy feeling! I spent the next 3 – 4 hours drifting in and out of sleep as the medicine got to work. Later that evening a wonderful friend Katherine, came to be with me in the hospital. She has been a great support since we first met in 2013, and due to her daughter being greatly affected by Lyme Disease, she is a world of knowledge and support. It was so comforting and helpful to have her by my side, especially as I became so drowsy I was struggling to communicate with the doctors and nurses, as well as my family back home. The doctor kept a close eye on me, and his primary concern was that I may have had a mild stroke, due to the droopy eye, face palsy and decreased sensation down my left arm and leg.

Hospital Bed Selfie!

Hospital Bed Selfie!

I was admitted into a ward and repeat bloods were run and a CT scan too. My bloods revealed I had very low levels of potassium, most likely caused by the increased vomiting over the previous few days and potentially the on-going use of antibiotics. Potassium is a mineral found at large inside the cells within the body and if levels reach a dangerously low range it can cause your heart to stop. I was immediatly prescribed potassium and given this every few hours by IV throughout the night and the following morning until my blood levels and electrolytes began to stabilise. I was given the all clear from a potential stroke and the diagnosis was viral encephalitis, inflammation of the brain! I only had to stay in the hospital one night and was gladly discharged within 24 hours. I went back home and continue to sleep, take meds and run fluids through my line. It was all more drama than I needed, but the treatment I received in the hospital helped to control the pain and symptoms.

By Monday I was able to communicate with my Lyme Doctor and begin more specific treatment for the virus. I was put on ‘Byron White A-V drops’, a potent concoction, which even one drop caused a painful reaction. Over the next few weeks I had to gradually increase the drops until I was taking them twice a day. This literally floored me initially, but I knew I had to persevere to treat and reduce the viral load.  Over time my level of toleration to this treatment grew and I started to notice a reduction in the viral symptoms and load. If only that was it! As those symptoms decreased, it then made way for all of the bacterial infections which had been escalating in the background to surface!

Thankyou for stopping by to read this new update.

To ensue this post isn’t text overload it will be continued in ‘Part 2’!

 

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PICC Line

Two days after arriving in California I headed to the hospital to get a PICC Line inserted. A PICC is a Peripherally Inserted Central Catheter. It is a thin tube which is inserted into a large vein in the upper arm and this is then threaded into another vein that leads to the heart. The PICC line can be used over and over again to  administer antibiotic medications, nutritional supplements and also for blood draws. When needing multiple intravenous medications daily this is often the next step as having needles inserted daily becomes painful and also veins begin to fail. During my first trip for treatment my veins became very problematic and this was just another layer of stress to add to what was already an erupting volcano of chaos!

There are of course risks with having this access line put in, but I feel in my case the benefits far out weigh the risks right now. The procedure itself wasn’t too bad. Luckily I had the support of a friend of mine who was also in the US getting treatment for Lyme. We met through an online Lyme support group but she has become a true friend and support to me daily and our similarities go beyond life with lyme. We are both the same age, have big dreams and are grabbing onto all treatment opportunities in the hope to achieve remission. To have her and her mum by my side was just such a huge relief and comfort too. The hospital was really efficient and before I knew it I was in my glamorous gown and cap and ready to be wheeled into theatre. The doctors and nurses were good at making conversation and distracting me from the procedure.  It didn’t take very long and insertion was not really that painful either. The area on the selected arm was numbed and carefully disinfected and then the only small pain was what I would describe as a hard pinch and the rest was pretty painless.  The line was inserted using an X-ray as a guide to ensure it was correctly placed and not touching the heart.  It was not long before I was wheeled back out of theatre with my new ‘accessory’, it was all a bit surreal! Later the same day I had increased pain in the arm but this is normal, it was just the medication wearing off and my body adjusting to this new foreign object.

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I felt very aware of my line at first, nervous to catch it or to move my arm too much and disturb the placement. You just have to be very careful, your range of movement is more limited and you can’t lift anything heavy with that arm, but most of the time you forget that it is there. The connecting tubes can neatly coil under a small fabric arm cover and this prevents the line getting pulled or caught in clothes. I was aware at first that people could see it, but I feel used to it now and just know it is part of the process to help me heal and I must just roll with it the programme, so to speak.

Having a PICC line or a Port seemed to be my only options for this next stage of treatment and be more beneficial long term too. For now I accept that it is just part of the process and it is providing reliable access for the medication I need daily. Showering is a palava and the arm can’t be submerged in water. Finding a reliable waterproof sleeve has proven difficult when you have a super skinny upper arm but with added strapping, cling film and medical tape I am just about managing! I have the dressings changed weekly at the clinic and the insertion area carefully cleaned in a sterile environment to reduce the risk of infection. Mixing and administering medication is becoming part of a daily routine and pretty much my full time job! I have to keep a track of ordering supplies and medications and I rely on multiple lists and spreadsheets as an extra brain! Sometimes it can all feel quite overwhelming but I know I must stay strong for getting through this difficult time now will allow me a future.


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Keep your eyes peeled for the next instalment of my journey in the Lyme light where I will be giving you the low down on the past four weeks of treatment and life so far on this side of the pond.

Thanks for reading and for your continuous support.

Chantelle xx