First, let us talk about travelling to Switzerland for the third time in 15 months for Lyme Disease treatment. And I sure as heck don’t mean to sound like a snobby, ungrateful brat. First, travelling when your unwell just absolutely sucks- for anyone who’s experienced it; you know what I mean. Second, travelling because your seeking medical care and paying $20-50K a visit is a bitter pill to swallow. Literally. Some meds I take once I get home from the clinic taste like they’ve been soaked in Javex and coated in ArmorAll.
There also is a hell of a lot to be grateful for in travelling here for the third time. First is that we’re able to do it. Yes, we owe money because of all of this; but we’ve made it happen and we’ll deal with the debt, eventually. If I never get better or continue to get worse, we will always be a one-income household… but if we invest in my health, I hope with all of my erratically beating heart I’ll make money again one day. And second, (it appears I am in the mood to list things numerically today) is that Stephen’s family is in Switzerland and we get to spend lots of time with them, especially his 87-year-old grandmother who we’ve stayed with each time. That is quality time you can’t put a price on, unless we were to bet on our family Skipbo games… because then I’d be making some money! For whatever reason, I tend to be quite lucky at a game of Skipbo, to the point others no longer enjoy playing against me.
Back to the real stuff though. In the days leading up to us travelling I was doing so poorly. I woke up the morning of our first lag of the journey which was a four-hour car ride and I could move and walk, and I wasn’t in horrible pain. It still required pain killers every 4-6 hours, but it was manageable. This was a huge improvement.
The next morning, we caught a two-hour flight to Toronto, hung out in the airport lounge for six hours before boarding the eight-hour flight to Zurich, where we landed at 7:20am. By the time we picked up the rental car and got to Stephen’s grandma’s it was 9:30am and by 10am I was in bed and asleep; and continued to be for the following seven hours.
Upon waking I learnt that family was upstairs here visiting, expecting our arrival. I drug myself out of bed like the walking-dead, and I probably looked like it too. The tendons around my knees were full of nodules, red and inflamed and my shoulders, arms and hands were in about as good of shape as yesterday’s overhead bin that rattled so hard during takeoff and landing I didn’t know if I should duck and cover my head. I did the zombie walk upstairs and onto the patio to have something to eat and visit.
Three hours later I was asleep again, this time it was a long 12-hour stretch of bottomless sleep. But waking up Monday was worse than the day before. I couldn’t take the stairs; one leg wouldn’t bend. Just to breathe and expand my rib cage hurt. I was an all around mess. Over the next two days I spent about an hour each day doing gentle stretches, while wondering if I was already regretting this long trip across the ocean.
Thankfully, after a two nights sleep, I got to the clinic in better shape, or at least I walked in. I had to take the elevators–but I was walking. Everything was still bothering me, but it wasn’t as horrible and I could appreciate that.
Wednesday April 24th – My First Fay of My Third Visit to Paracelsus
Back in 2018 during my first visit I cried. I didn’t mean to, but it happened as I explained to my previous doctor,
“I am terrified of not getting better. I worry I’ll go backwards and I can’t go back to that,”
Trip number three also stared with me crying.
These tears were uglier. No one has ever told me I’m an ugly crier–but I think I am. I hold my breath like I’m ten feet under water when things get hard or when I cry. I guess I’m concentrating and trying so hard to keep the tears in that I keep my breath in too. Maybe my ego thinks if I can keep it all inside no one will see the pain, fear, sadness or frustration.
Why the ugly tears?
My fears from 2018 came true to some extent. If you read my last post, you’ll remember that so far 2019 has brought me nothing but pain, exhaustion, and more pain. Fillet me open and poke burning hot spikes into my body. That is the pain I’m talking about.
I ran out of my IV treatment kits from Paracelsus that I’d been doing at home and it shows. Those meds work. You can check back into that last post to read more about it and see a couple of pictures. The thing with feeling so crappy the last few months and with having a chronic illness is that it takes a toll on you mentally and emotionally. I’ve been a lot more mopey. Lately I make Eeyore look like the happy, carefree BFF of a bear. I cry easy and feel like I’m in a dark hole with no way to claw myself back some days.
And that fear I already mentioned never goes away. Will this get better?
This morning my day started with a doctor appointment. With another new doctor. Each time I go my doctor is new, and they’ve left the clinic by the time I return again. There are some real internal politics going on that (in my opinion) affect the patient. I’ve found that the continuation of care isn’t what it should be, when there are new doctors coming and leaving with each new moon. With that being said my favourite doctor of all the ones I’ve had is still here. He’s the naturopath at Paracelsus and, aside from Stephen is my lifebuoy (the round thing they toss at a distressed swimmer) while I am here.
My new doctor seems good; but truthfully, I haven’t really made my mind up yet. At this point I think I am keeping a distance in case the next moon sweeps her away from the clinic too. Stephen has had a good first impression from her though, but I also had some bad experiences with doctors during my first visit–and because of that I know I am being critical; but I am also placing my life (and an excessively large sum of money) in their hands with each visit. So yeah, I want them to get it right. I also want to be listened to and heard, and my opinion about my treatment plan needs to be important to them. I want the ideal doctor-patient relationship; I think we all deserve that. I’ve experienced it with a good handful of doctors in my life, and I don’t see why that should be any different.
After the usual meet and greet, while telling her my history she moved onto a physical examination. I was ready to head over to the table and lay down, but instead she asked me to scoot my chair closer and lean in to look at her face. While she studied mine.
It was like having a staring contest and I tried not to smile and laugh while she did the same. Finally, I started to focus on her perfectly manicured eyebrows which only made me feel self conscious about my own. I could only wish mine were that well coiffed. Next thing I know she is saying she can see liver stress, hormone imbalance, among a half dozen other things just by studying my face. It brought me back to the time I had my palm read; except when that happened I was told about all the (mostly) good things facing me in life. Not the broken and dysfunctional ones. But hey, there was a bright side. She saw no issues with my heart. That’s a plus. Even with a murmur I suppose it looked healthy enough.
Afterward she listened to me breathe and the standard stuff you’d expect from a doctor. Once she finished my favourite doctor came in and joined us, we caught up and summarized the last few months. He asked me the million-dollar question,
“What do you think has happened? What does your gut or intuition tell you has happened in your body?”
My answer was two-fold. First, I’ve gone a long time with no antivirals or anti-bacterials; I think the bacteria have thrived and reproduced. Second, after working at trying to remove the heavy metals my body could not effectively excrete them after they were bound which caused them to be reabsorbed.
We discussed my treatment plan for the next week and a half. I won’t be doing any hyperthermia sessions–and I didn’t honestly expect to be doing any. Last time I wasn’t stable enough and I’m in worse shape this time. It caused me major issues the first time I did it during my inaugural Paracelsus trip (you can read about it in this post) and we’re avoiding doing more harm than good. The biggest reason we’re avoiding it is because the Bartonella infection is so rampant and uncontrolled right now.
Instead, during this visit we will focus on “getting rid of the critters” as he says it by daily ozone therapy and various infusions. My schedule has two colonics in it and daily IHHT (interval hypoxie-hyperoxie therapy) and laser light therapy. There were a number of things I asked them to eliminate. I just can’t do this $h!t anymore and filling my day with seven to nine hours of therapies will break me from an emotional standpoint. And lead to further exhaustion. During this visit there are two new therapies on my schedule though; one I will keep for sure as I think it will be helpful, they simply call it “nose therapy” and the second is “swinging cushion”–yes, they both sound very technologically advanced and intimidating, right?
They apply a mixture of homeopathic medication into the dose. It has a local and systemic effect the body. Did you know part of your immune system is inside your nasal cavity? Yep, just another reason not to pick your nose!
The sinus cavities are massaged as they apply the medication. This so-called “nose therapy” is recommended for sinusitis, chronic sinus blockages, and intestinal problems. Most our immune system is actually in the intestine, so now you can see the link between the nose and the gut if you didn’t realize this before.
Swinging Cushion Therapy
This is a special cushion, filled with air that you lay on. This takes pressure off the spinal column, and it is forced into a state of relaxation. The cushion oscillates and any vertebra that are rigid or “stuck” are mobilized while it causes the nearby muscles to relax.
It lasts for about an hour and the information sheet also says,
“Through the segmental allocation of the central nervous system, it positively affects the internal organs. Depending on the evaluation by the therapist, they can integrate a massage. In the concluding phase of treatment, it is important to rest for 10 minutes to support the relaxation of the muscular system over the nervous system,”
Swinging cushion therapy is indicated for: balance of the autonomic nervous system, deep relaxation, back complaints and/or tension, polymyalgia, scoliosis, postural problems, fibromyalgia, and blockages/rigid vertebra.
Am I looking forward to this one?
You freaking bet I am. A fancy hammock and a massage?
At the end of my appointment with the new doctor she did neural therapy. I did this back in January 2018, and nearly every day she stabbed with needles all over the place. It seems like neural therapy will be a big part of my daily doctor appointments again.
Today she focused on a few spots: above and in-between my eyes, the scar tissue from removing my tonsils and inside the sinus cavities, which is accessed by going inside your mouth and you can hear the solution being injected, on one side I even felt it moving under my eye.
While she did the first injections over my eyes they naturally watered. But that acted as a catalyst and a cue for me to just cry. For no reason. Cue the ugly tears because they were coming despite anything I tried to do to stop it.
The doctor was nice about it; she told me it was ok–that I needed to let the years of frustrations out. She kept reminding me to breathe, because I hold my breath when I cry and it is apparently obvious. Stephen also kept reminding me to breathe, and then I realized the doctor was tapping me on the top of my head, which I think was meant as a distraction? Either way… it worked, as I began to wondered if she intended to tap me, or was if she was trying to comforting me.
I did IHHT next and then an ozone infusion, which has to be in my arm still–we can’t use my port for that, so there will be daily pokes into my veins. In the afternoon we met with the patient coordinator which was really nothing; I am familiar with the Clinic enough I didn’t need instruction or reminders. She told us that there would be changes coming this year, but not when. Dr. Rau is coming back to the Clinic and bringing with him a handful of staff which means some people are being forced out of Paracelsus. She didn’t say who, except that she was one of them.
My last appointment was an infusion, and I did a phosphatidylcholine infusion for the first time.
This is an explanation adapted from their handout:
Cell membranes are (in part) made of phosopholipids and are typically called as phospholipid bi-layers.
Any damage to cell membranes can lead to damage of organs. When the membranes are damaged, they can still be repaired, even at the level of gene repair. Cellular and subcellular membranes depend on the strength of the phospholipid bi-layers.
If there is damage to those bi-layers, cellular toxins can penetrate the cell and cause serious organ and tissue damage.
Phospolipids, especially in the form of phosphatidylcholine are essential for regenerating and renewing cell membranes. Choline is a precursor to acetylcholine, which is an important neurotransmitter that plays a key role in muscle control, memory and many other functions. Interesting, right? I’ve also blogged a little about choline and included recipes in an older post; you can check it out here.
The therapy used at Paracelsus is delivered intravenously; it is non-toxic, non-embryo-toxic, non-carcinogenic and as a body-identical substance, it is well tolerated.
Phosolipids can remove the fatty deposits and calcifications in the arteries and improve blood circulation. It also increases the body’s ability to detoxify.
Indications for these infusions are: liver protection and cleansing, high cholesterol, high blood pressure, anti-atherosclerotic affect, brain performance in old age, protection against alzheimers, learning disabilities, growth disorders, lack of concentration, decreased memory, fatty liver, lipid metabolism disorders, disrupted amino acid metabolism, disrupted carnitine metabolism, reduced renewal of red blood cells, inflammation, tumors, prevention of thrombosis, balancing the autonomic nervous system, and after cardiac bypass or stent placement.
Starting the infusion was a bit of a process. The nurse attempted to access my port, when she put the needle in and tried to get blood return nothing came. Ever since our disastrous first attempt at accessing my port when it was first put it (you can check out this post and read all about it) it has been working fine, albeit sometimes slow. When she wasn’t able to get it to work today I wasn’t too worried, I thought maybe she put the needle too far off from the centre. After the failed attempt she pulled it out to try again and had me sit up straight for the second try. There was still no blood return.
Stephen got up to inspect her work this time, I was ready to tell him to get the supplies out of my bag and just do it himself; it is a strange world when you trust your carpenter-husband to do a RN’s job better than an RN. Before we left to Switzerland my last infusion at home was being really temperamental. I noticed the flow rate was directly linked to the position I was in. If I shrugged my shoulders, it would run faster. I decided before she pulled the needle again I would try it. Guess what? It worked.
From there I settled back, I had to shrug a few times to get it going, but it worked.
During the first bit of the IV it seemed like my head gained a couple pounds and it became heavy; I thought maybe I would feel a bit worse after this infusion, but a couple hours later my hand started to move better, I still can’t make a fist but I can curl my fingers in closer. I could also get up and down the stairs with much less an issue than I have for the last week or so.
Thursday April 25th – Day Two
My day started with darkfield microscopy (live blood analysis) and I can tell you it looked worse than it did during my last visit. My favourite doctor was supposed to do the procedure, but I had gotten an email the night before telling me another (also new to me) doctor would do it instead.
At first I was bummed out, being passed around to yet another doctor; but this guy quickly made his way to my “favourite list” and I was glad to have him. It turns out my original doctor had an accident and broke his leg. I don’t imagine I will see him for the rest of my visit.
When we looked at my blood, there was a lot of clumping of the RBCs and the WBCs were behaving poorly and near the point of lysis (the disintegration of a cell by rupture of the cell wall or membrane). He could see that the cell membranes were weak, but the phosphatidylcholine infusions work to repair this.
He also told us there were fibrin nests, undigested proteins, which shows that the membrane of my intestine is still hyper-permeable (AKA Leaky Gut Syndrome) which is still not surprising given the long-term antibiotics I was taking in 2016-2017. These things take a while to heal, and there are other factors at play that also contribute to the damage of the intestinal lining. For more info about this you can refer back to a post from my first trip to Paracelsus, and this one from my second visit.
During my first visit there was bacteria visible in the blood sample, but not during the second. This time we saw bacteria again, in two different forms which isn’t surprising. Especially given I’ve been getting worse and my time between my second and current visit didn’t include much for antibacterials or virals.
My blood is still also too acidic, and he could see signs of the heavy metal toxicity as well.
Based on the overall results they’ve added IV artemisinin to my schedule last week. Artemisinin is a plant derivative that is used as an anti-malarial.
Afterwards I did an ozone infusion, and had my lab work done, a session of IHHT and then nose therapy. Nose therapy wasn’t too bad, they mix eight different homeopathic medications together and apply about 20 drops into each nostril then massage the sinus cavities. They repeated this about seven or eight times. I didn’t ask what the eight different homeopathic meds were, even though I wanted to know a little more about what they were dropping into my nose.
Last for the day was a curcumin (turmeric) infusion. This was a first time for me as they didn’t offer it during my last two visits. It is as yellow as anyone would expect it to be and it actually stained the catheter of my port-a-cath afterwards. My port was being incredibly temperamental today; if I moved slightly in the wrong way, it would stop flowing. This was made more difficult by the fact they’re using pumps now with the IVs; if the fluid stops dripping an alarm goes off on the pump and they have to come reset it. I finally asked if they could just do a gravity drip instead; I kept an eye on it and kept my arms and shoulders positioned so it kept running.
Overall, today I am feeling a little better than yesterday. My knees hurt less and I can curl my fingers into a fist a bit better too, I still can’t actually make a fist yet though; hopefully I won’t need to practice any kind of self defense, I would end up hurting myself more than anyone else.
Friday April 26th – Day Three
My day started with ozone, if you didn’t notice the pattern it is being done daily. We’re trying to oxygenate my body as much as possible. This helps in a lot of ways, but our main goal with it is to help kill the bartonella infection. If you don’t know or remember what ozone is, you can refer back to this blog post.
Next I had an IHHT session again, followed by a colonic. If you’re new to my blog, you can go back to my posts from the first half of 2018 where I talk in a lot more detail about all the different therapies and what they do. I’ll leave links at the bottom of this post to all the previous Paracelsus-related blogs.
We met with the doctor after lunch, she’s starting to grow on me but she still doesn’t “talk out loud” like the other two doctors I like. When they “talk out loud” you get a good understanding of the thoughts they’re having about your health, why they’re choosing a certain therapy and just a lot more details that someone like me thrives on.
She added a homeopathic med I’d taken during my first trip to Paracelsus that will help with improving the tight junctions in my gut and repairing my intestinal lining, and another to help with detoxing. Next she did more neural therapy, she’s all about the neural therapy, but I am lucky that despite that she is still a lot less enthusiastic with a needle than the doctor I had during my first visit. That doctor did neural therapy every day, and not just in one spot… she would stick me 10-30 or more times each session. My new doctor doesn’t like to do neural therapy daily and not too much at once. She also told me that every spot she will stick a needle into, she has had done to her as well; she wants to know what the patient experiences and called it her “Code of Honor” which I can totally appreciate. Especially after she stuck the needle deep down into my skin and injected it near my ovaries. Only two needles though and she was done.
Following the appointment with her I went for an infusion, phosphatidylcholine again. My port was working great today and the alarm on the pump didn’t go off once–and I was moving around while it ran. That was a big relief. After the infusion they removed the gripper needle from my chest so I would be free for the weekend and I went down to my last appointment: Swinging Cushion.
Swinging Cushion was not what I was expecting.
So much for the fancy hammock I pictured. Walking into the room I took one look and the look on my face had to have changed. It was a regular massage bed and propped up on the wall beside it was basically a floaty. In case you’re not familiar with what a “floaty” is… it is the plastic, blow up thing you float on in the pool or lake.
So this floaty. It is basically a U-shape, and they place it on the massage table. You lay face down over it, with your stomach at the bend in the U and it your face is in the open part. The therapist rocks you back and forth while doing a massage, stretching out the muscles in the back and working along the spine. I was so skeptical at first, but it turned out to be a surprisingly relaxing therapy and it felt great. Once the rocking motion was over, it reminded me of the “tingling” sensation you get after you’ve used a Chi Machine.
Once the 30-minute rocking massaging-stretching is done, they stop and move into more massage and cupping. My therapist was amazing at the massage part. I think my shoulders dropped from my ears by a whole inch. Is it going to be a highly effective therapy? Probably not, especially if it isn’t done over the long term–but I sure enjoyed it and will probably do one or two more before my time here is up.
If you’re new here and want to catch up on any of the rest of my Paracelsus blogs I‘ve listed them from oldest to newest:
You may have also noticed that May is Lyme Disease Awareness Month. I didn’t get around to posting much, we only got home from Switzerland on the 18th of May and then I caught some nasty germs in my travels which lead to me being in bed for the next week and a half. After catching up on some of the responsibilities and chores I needed to get done, I was able to squeeze in enough time to get this post up on the every last day of the month.
Please educate yourself on tick prevention. There are a lot of ways to help keep you safe, including bug spray, clothes with InsectShield built in, wear light colored clothing, tuck your pants into your socks, wear long sleeves – and when you come in from outdoors change your clothes and check yourself and family for ticks. There are tons of resources out there from lots of creditable sources on how to keep yourself, your family and your pets safe.
To keep Elliot safe, and make sure he doesn’t bring any ticks into our home we give him Bravecto every year and he also wears an amber collar which is said to act as a tick and bug repellant.