September 2019

Well, I am five days into therapies at a clinic that is a lot more local… a four hour drive away.  So compared to crossing the Atlantic? It’s just a hop, skip and a jump.  Plus I went to school here. I have friends and family here, and they are all just a phone call away. 

So first, addressing the question:

“Did you abandon the Paracelsus treatments?”

Nope.  Not at all.  If you remember reading any blogs about Paracelsus you may remember that there are some IV therapies I can’t bring home from the Clinic, and some I just can’t do at home locally (like ozone).  The reason I’ve found myself sitting at a new, more local clinic this week is because of the IVs that I can’t bring back and do at home. 

My week with the Naturopath here has been just one infusion a day and a lot to are designed to “build me up” after the hard/antibacterial ones knock me down. It has been mostly pleasant experience with the IVs so far in terms of the aftermath.  I’m attending the Clinic the same way I did at Paracelsus, Monday through Friday as an outpatient. 

Day One

We came here on Friday. Stephen drove me into the City and I had my first IV appointment at the Clinic.  They did a H2O2 infusion (hydrogen peroxide) and I am not going to lie; this used to freak the pants right off of me when I read about it in 2016 when my Lyme Life started. 

Hydrogen peroxide?

The stuff that burns like a mother-f’er when you put it on a cut?

That stuff in the brown bottle that I can buy for less than $2 at the drug store?

WTF?

Desperate times call for desperate measures (disclaimer: please, I repeat please do not ever be so desperate you take any measures into your own hands. This isn’t just a bottle of hydrogen peroxide from a pharmacy drained into a vein, it still needs to be done by a doctor – never try these things at home on your own)

At least that’s what I’ve told myself, but in reality I know that this isn’t really a desperate measure either.  I mean… yeah, okay – we are willing to and have been doing everything we can get within our means to get my health back. I refuse to give up on it and on the days where I don’t have the will to fight, Stephen is right there in my corner, coaching me through it and cheering me on because he refuses to give up on me. 

I’m damn lucky.

A few years back when I read about these H2O2 IVs I would have said “no dice” and moved on.  On Friday that was not the case.  Lately I haven’t been doing great. Heck, most days aren’t even decent.  Today was already rough; it felt like to walk I was pushing legs made of lead, I was that annoying person who made the swish, swish noise as they walked because I wasn’t lifting my feet… and no, it wasn’t cause I was simply too lazy and prefer to walk like a sloth. To lift my arms for changing my shirt was already hard.  Four hours after the IV it was a lot worse.

As we laid in the hotel room bed, I was cursing myself.  One, I had some major FOMO (fear of missing out). I was in the City; I wanted to feel well and go have a nice dinner or see a movie, but those weren’t in the cards for me.  After arnica oil, CBD gummies, ointment and Tylenol, plus a hot bath I started to get a little better – but to get undressed and into the tub, then put my PJs on? That was all on Stephen. I can normally lift my arms to rest on his shoulders to help, but I couldn’t even lift them that far.

Was the H2O2 as horrible as I thought it was? Was it a Herx?

I believe it was the later of the two.  See, its been a while since I’ve had any major antibacterial action on board.  My at-home infusions included a Lyme Protocol, but they were about 4-6 weeks ago. Adding the oxygen to my body like that likely caused those anaerobic bacteria to die and my body was dealing with the endotoxicity of it.

Maybe you’re wondering, “what does H2O2 do?” so I am going to paraphrase from the website of the doctor I’m seeing, and then leave it with you if you want to do some more research on it.  Other than the increasing oxygen in the blood, it can help stimulate white blood cell production, convert waste and toxins from the body’s cellular processes into a more easily eliminated form and it can stimulate the production of ATP which is used as the body’s energy for many of our daily processes, like muscle contraction and nerve impulse transmission. 

That night I took a sleeping pill, which is something I’ve been needing two-to-three times a week to get a better sleep.  I’m waking up lots each night in pain, and knocking myself out has been the only way I get a slightly better sleep.  When I woke up in the morning, 11 hours later I did feel better. Not great, but better. I was back to how I felt before the IV.  Stephen needed to do some errands,  and that means building supply and tool stores;  I lasted about 15 minutes before I had to go lay down in the car and wait for him. 

Later that night I wanted so badly to enjoy a night in the City, FOMO was hitting me hard again.  It was like everyone was at a party that I wasn’t allowed to go to. We ended up having a light snack  at a new restaurant early in the evening and thought we would head out for a nice dinner after, but we ended up back in the hotel. I had leftovers for dinner and went to bed early. 

Sunday was a little better, we spent the day at a thermal spa which was really nice and relaxing.  I was still really sore and we treated ourselves to massages before leaving.  After that we made our way to my “home away from home” while I am here, which is my mom’s godmother’s house.  It is the most comfortable place for me here, they are like family, plus I actually lived with them for my last semester of University so it is really like a home-away-from-home for me. 

Day Two

Monday morning rolls around.  I have an appointment at the Naturopath’s office and I also have a follow up appointment with a Rheumatologist who I saw back in April, plus an appointment at a “Travel and Tropical Medicine” Clinic. 

I was so flippin’ nervous for the Rheumatology appointment.  I was afraid that she was going to suggest prednisone or other immune suppressing therapy and send me on me way, I spent the entire time in the waiting room (which ended up being 45 minutes) doing deep breaths in through my nose, and loud exhales through my mouth while I tried to stay calm and not panic. 

To say that my nerves and tolerance to any of medical stuff is frayed these days is an understatement. Stephen kept stealing side glances at me and asking why I was freaking out. I had no legitimate answer, but I was. Talking about the mental health spin off of living with a chronic illness is a topic for an entirely different blog post. Or book.

On the plus side, I had some very clear, visible symptoms again during this visit with her. My knee and leg were still swollen, not like they were a few weeks ago… but it was still easy to see.  There were also two lumps in my wrist and the palm of my other hand was so swollen that I couldn’t grip anything with it.  At least she could assess something she could see.

She had recently ordered an MRI of my leg, which showed nothing abnormal.  When I was in her office she quickly left and came back because there was an ultrasound machine open and she wanted to look at my ankle and wrist for herself.  As I laid on my stomach and she started to look at my ankle she immediately said,

“I don’t know how the MRI missed this, there is clearly inflammation”

and then had started to talk about my worse fear… prednisone and immune suppression.  I was so glad I was still laying face down on the table and she couldn’t see the tears sprouting up.

First, let me say that I am not trying to be a non-compliant patient. 

I am afraid of the side effects of these drugs and the long term effect of taking them.  I’m still young.  If this happened in my 60’s I think I would be more comfortable with it… but I’m just not there yet.  When I explained this to her, and we talked more about the possibility of an active infection in my body she did understand where I was coming from and why, through my tears, I was afraid of these drugs. 

We talked more about how we’ve seen improvement after I am on a consistent supply of the IVs I am doing at home (we ran out earlier this year and my meds got stuck at Customs for eight solid weeks, you can read more of that blog here) and that was a set back.  I got worse.  We also talked about how Artemisinin is one of the natural meds that’s been helpful. 

Artemisinin/Artemisia/Artesunate is Wormwood, an anti-malarial.  When we got into this side of the conversation she also suggested the possibility of a drug called hydroxycholorquinine, also an antimalarial used for arthritis. 

But here is my newest question:

Are my joints inflamed? Is there an arthritic process happening or are these ultrasounds suggesting the problems are my soft tissue?

When she proceeded to do the ultrasound on my wrist I could actually see the screen, and I have to say seeing it was really neat.  There were big black spots around the top and bottom of my tendon, going up into my hand and down into my forearm.  When she turned the Doppler on it lit up, showing the inflammation. 

We concluded the appointment on a good note. She isn’t giving up and saying prednisone is my only lifelong option. She is going to keep digging while we do what we’ve been doing.  She also found after reviewing my history of labs and the ones done at the Mayo Clinic is that there wasn’t a lot of genetic testing done and there should have been.  This is going to take a while to get processed and done, there is apparently a committee that meets once a month to approve the genetic tests that a doctor requests.  She’s also going to bring my case to her colleagues during their rounds to consider other ideas and possibilities, and lastly, she is going to look into the possibility of a Mast Cell Activation Disorder, which you can learn about by clicking here.

The next doctor that I saw was one that she referred me to at the “travel clinic”.  My best guess would be that this was an infectious disease specialist, but he didn’t introduce us with his formal title, so I’m not sure. He had a decent grasp on my file from the rheumatologist’s summary and notes, so we just filled in the gaps a bit for him. We reviewed the symptoms and onset in relation to being bitten, as well as our travel history.  His job was to make sure any illness I could have acquired during the travel we had done near the onset of everything was or wasn’t a contributing factor.  He also made note of the fact there are many different viral, bacterial and parasitic infections that haven’t been identified or studied yet either, that is is possible I am dealing with something “weird and wonderful.”

Funny fact: my family doctor also says I have the “weird and wonderfuls”… I think these two should trademark the term because it at least sounds somewhat pleasant.

In the end we left with a lab requisition to test for a few things of infectious nature: parvo and chikengunya (both of which I’ve had done before, the first was positive – as many people’s would be, and the second was negative), as well as Lyme, Brucella, Zika and Dengue Fever.  Yes, he’s checking for Lyme again.  In Manitoba they’ve made some changes with their tests for Lyme and he thought it might be worthwhile.  Being an Ontarian I am not familiar with the tests in Manitoba but after speaking with the Naturopath later in the week my understanding is it is most likely an ELISA test and that the accuracy still isn’t great.

The last appointment of the day rolled around and we were back in the naturopath’s clinic.  I was finally relaxed and felt a lot better.  The stress from the first two appointments was over and they went as well as I could have expected.  I even said to my Stephen,

“If I saw these two doctors back when this all started in 2014, I would have felt hopeful from the start”

My infusion today was a Myers Cocktail, which is generally a mix of magnesium, calcium, B vitamins and vitamin C.  At the end there is a glutathione push, which is a pretty powerful antioxidant.  This is similar to one of my infusions at home, and a few hours after the infusion Monday night I had fully recovered from how I was feeling Friday.

After we drove to my home-away-from-home and Stephen gathered his things to head home and back to work. He didn’t leave the City until 6:30pm so it was a long drive home for him, while I unpacked my bags and settled in for the week. 

Day Three

Tuesday at the Clinic I did an Artesunate IV with a high dose of Vitamin C.  Artesunate is something I described above, the antimalarial.  I wasn’t sure if I would be feeling too rough later that night, but it wasn’t horrible – at least not like the flare I had Friday. 

For the third day now, my veins were utterly useless for sticking a needle or catheter into. It has taking an average of three pokes to get the needle into the vein each day.  I had asked if there was someone who was able to access my port, and yes – we were in luck.  The downside was that this meant no Emla (numbing) cream and I was going at it cold turkey. It actually isn’t as bad as I remembered when we accessed it the very first (three times) in one sitting. That first time was only one week post-op and I think I was really sore from surgery still. 

As luck would have it, or not… accessing my port was unsuccessful.  I am in a different province right now, and the port I have isn’t like any they’ve seen here before, it was accessed too low and therefore didn’t work.  I can be totally honest and tell you I have anxiety still each time someone accesses it, I worry that the catheter and the device will disconnect again… so when it didn’t work I didn’t want to try again.  We tried a regular needle in my arm for the 4^th time and got it in. 

I didn’t feel too terrible as the day went on, but I’ve been making sure to rest a ton and drink lots of water.  In the evening I started doing castor oil packs too – anything that might help to avoid the die off reaction (herx) from the bacteria, I’m on it.

After the clinic one of my friends picked me up and we got to chat, have a quick coffee and then she dropped me off back at “home”.

Day Four

Wednesday came quickly, halfway through the Clinic visits for this week.  I did another infusion that was new for me: MSM. 

What is MSM?

It is a naturally-occurring, organic sulfur-containing molecule, its function is to to supply the sulfur required to make the amino acids cysteine and methionine.  There are two properties that make it helpful for people with fibromyalgia and arthritis; it has an anti-inflammatory effect and it is a powerful antioxidant.

While the doctor was getting the IV going he had mentioned that I should have planned for more PRP injections for my wrists and joints to start with (which I asked about when I booked my appointments but I think there was a misunderstanding) and they only booked me for one this coming Friday.  Usually it works by doing a series of them every second day for a bit, then usually a maintenance injection every 6-8 weeks is all you need. 

When he realized I only had the one appointment he made sure to get me in that today to start, but that left me with a two and a half hour window of time to kill.  Luckily I had been feeling better and moving easier with the past few days of infusions and I was able to walk to a close-by Starbucks and I had a book with me… so I sat and read for a long time before grabbing lunch and heading back.

Injections? What Injections?

Just saying injection is vague, yes I know.  So here are the two kinds he has offered me:

The first was prolotherapy:

It is mostly used for pain and tendon/ligament injury. The concept of prolotherapy involves strengthening the ligaments and tendons of the body by injection of a proliferative agent.  Proliferation means “to grow by rapid production of new parts, cells, buds, or offspring.” A major component of the injection is dextrose to the insertion point of a ligament. It causes the surrounding cells to leak out growth factors, which attract fibroblasts and osteoblasts.  These make more connective tissue so that the tendons and ligaments can become stronger.  My injection also included lidocaine for pain relief. 

The second kind was PRP injections:

PRP stands for “platelet rich plasma” and is done by drawing out your own blood and centrifuging (spinning) it to separate the platelets.  These are what is injected. It can help to reduce pain, heal and regenerate the damaged tissue in joints, ligaments, tendons and muscles. The platelet rich plasma produces a number of growth factors, and together they work to reconstruct the injured area and to relieve pain. 

As a side note: later when he did this injection for me he showed me my platelets in the syringe and commented on how clear it was, which meant my diet was healthy – often he sees a lot of PRP look cloudy, which is from less than ideal dietary choices.  So, obviously and not surprising for me, I had to ask,

“is it possible to be more clear than this?”

The answer was, “no” – so I was pretty proud of myself, pat on the back for me!

Back to the injections on Wednesday.  He did about a dozen and focused on my left knee, both wrists and left shoulder. 

Now, let me tell you that all of these have been consistently, without a break, bothering me for weeks. They’ve contributed to how poor of quality of sleep I have been having because they just hurt so much.  It helped to the point that I’ve been more comfortable than I have been in a very long time. 

How long will it last?

I’m not sure, but that is why they suggest doing a few to start, then maintenance injections.

Day Five

Thursday rolled around and I had a short day at the clinic, my only therapy today was ozone – or in comparison to the terms from Paracelsus, this would be “oxyvein”.  Just like at Paracelsus you start low and work your way up.  I started with 20 minutes.  Unlike at Paracelsus, you sit up for the procedure. 

When I did oxyvein in Switzerland I was not allowed to sit up during the procedure or for 15 minutes after. We had to lay down.  Now I understand why.  It left me feeling really unwell and nauseous, which I was bummed out over for a few reasons:

First- it sucks when you don’t feel well, and

Second- I had plans to have lunch with one of my friends from University after and all I could picture myself doing was curling up in the fetal position and whining. 

Luckily for me, it worked out, she picked me up 40 minutes later and in that time my body had recalibrated whatever it needed to do and I was feeling 80% back to my baseline.  We had a great time catching up and I got to meet her baby, so it was well worth the discomfort in the beginning.   

After lunch I stopped at one of the labs in the City and had the blood work done that the doctor from the Travel Clinic ordered.  Like usual, my veins did not cooperate and it took a few tries before we got a blood sample. 

Day Six

Friday was a longer day at the Clinic, but still short and sweet for the most part.  Today I started with PRP injections.  My veins continue to hate sharp pointy objects and either roll or collapse when they stick the needle in.  It took a few tries but we finally got the five vials of blood needed to generate enough for the PRP injection.  The injection was only in my wrist today as there were still lumps, albeit much smaller since Wednesday’s prolotherapy injection.  He mentioned my wrist would be more sore from the injection for a few days to start with, so not to be alarmed.

Side note: he was entirely and without a doubt correct about this.

My infusion was hydrogen peroxide again today, and afterwards I got home – drank lots of water and took a more than necessary nap.   My shoulder and knee have started to hurt more again, but they’re still better than they were before the injections on Wednesday.

Saturday rolled around quickly. I had hoped to do a lot more reading, writing, journaling – all the good stuff – while I was here and away from the normal daily routine and responsibilities of home.  I haven’t… except for read a book on finances. Yeah, of all the things – this has been what is been the most engaging.

My mom’s godparents took me on a trip to Costco where I commandeered enough coffee to last us for the next four months, plus a big tin of matcha powder – I love saving money, so I was excited – I do love my morning coffee. 

The weather turned out to be beautiful this weekend, and I couldn’t stand to be indoors any longer so I took a slow walk through their neighborhood.  I found a podcast with an interview from the author of The Happiness Equation that kept me distracted long enough to get through the walk, but afterwards I realized it was still too much. I went beyond what my body was capable of. My knees are screaming at me, telling me I overdid it.

Sunday was a quiet and relaxing day. I caught up on a few things, got into writing – which has been too much for my wrist and I’ve been icing it.  Stephen is coming back to the City later this afternoon and we’ll be driving home tomorrow after my last appointment which should be a Myers Cocktail with glutathione. 

When everything fails

Monday morning Stephen tried to access my port so that we could use it at the clinic and save my arms from the countless needle pokes while trying to access a vein. Surprisingly, he missed. 

He’s never missed. 

When we flushed it there was pressure, and I made him stop right away.  He thought he put the needle in on a bad angle and said we’d try tomorrow when we got home.  The instant it gives us any grief we get a become a bit unsettled after the issue I had when it was put in (you can read about that here) The only thing this time is that I had a gut feeling that things were not fine and well. 

On Tuesday after being home and settled, he came home from work during the day to access my port.  It still did not work.  When he tried to flush I felt a strange pressure again.

The same kind of pressure I felt when the line was disconnected right after it was put in.

At this point I was really sure there was a problem, but he said he was in a rush and that he must have missed again. I pointed out to him that he’s never missed before – the idea of him missing with three needles over two days seemed unlikely and the pressure when flushing it was abnormal. It kept leading me to believe the issue was was more than just missing the target. 

Not wanting to face the reality of “what if there is an issue?” I was satiated in trying again tomorrow, and if it still didn’t work we would go to the hospital.

Wednesday rolled around and my port still failed to work when Stephen accessed it.  When he flushed I now felt that same pressure but higher up, closer to my collar bone.  I knew without a doubt that my gut instinct was right and something about my port was wrong.

Stay tuned until next time… and as always, thank you from the bottom of my heart for reading this. I appreciate the heck out of everyone who takes the time to stay up to date with my Lyme Life and I cannot thank you enough.