Finally! I am so darn happy to finally get this last post up about my four weeks of Lyme Disease treatment at Paracelsus – which was now 8 months ago. Originally, I’d hoped to have this all posted within a couple months of leaving Paracelsus but if you’re living this Lyme Life you know that things just don’t go as planned.
If you’re new around here and want to go back and catch up, I’ve linked to my earlier posts about Paracelsus below:
My decision to go to Paracelsus
Treatment – Week Two, Part One
Treatment – Week Two, Part Two – including whole body hyperthermia
Treatment – Week Three, Part One
Treatment – Week Three, Part Two
Four Months after Paracelsus – An Update
At the bottom of this blog post I’ll also be telling you what is next… a bit of an prelude to the next step we are taking in this journey, which is far from over but I am really confident things are moving in the right direction.
(the picture above was taken in Zurich the day before I left for home)
My last week at the clinic is finally here! Thank my lucky stars this is almost over! I realize I sound dramatic, but these last three weeks in the Lyme Life have just been crappy, and that is putting it lightly. I’ve never felt so many emotions–it’s been a roller coaster and there are times when I feel like I’m not buckled in and about to be tossed out to my demise. Okay–that last part might have been dramatic.
Today I started with the pulsating magnetic field and the rest of the day was full of other therapies: a colonic, oxyvein and an infusion, deep oszillation and Schondorf therapy. I had another IRA-Therm session (the 1 hour hyperthermia) which I did alright through. Ever since the whole body hyperthermia session when it was one of the worst mental struggles I’ve dealt with, I am psyching myself out.
The first 20 minutes of the IRA-Therm session flew by as usual… I slept, that’s the beauty of being so exhausted here: you can sleep through a lot of therapies! My nurse for this session was different, and really nice but less hands-on. The previous would put a new cold cloth on my head and give me sips of water every 3-4 minutes without me having to ask. This was different, I had to ask each time and felt bad for being annoying, but I asked anyway. Screw being more uncomfortable. I tried to tough it out and asked every 5-8 minutes instead.
The other nurse also put the cold cloth on my face and wiped sweat away from my eyes, when you sweat so much it burns when it gets into your eyes, she also dried around my nose so that the oxygen prongs would stay put. The nurse today didn’t do either of these things, so for the last 10-15 minutes I was moving my hand out from under the cloth and foil sheet to push the prongs back up to my nose. Each movement was loud, sounding like crunching tin foil–so I was making all sorts of noise but she really didn’t seem to clue into what I was doing. And I felt too annoying to tell her otherwise. Overall it was OK this time, but I did ask to bring them temperature down sooner than it was supposed to be.
During the previous session my temperature when up to 38.9C and the goal is 38.5C. I know from my earlier experiences that it was important my body not go higher than 38.5C. She wasn’t too keen on decreasing the temperature because I didn’t reach the goal yet, but I knew I’d keep warming up even after the intensity of the heat was turned down. My final temp was 38.3C and I am happy with it being a bit lower. I don’t want to wear myself down this week.
My regular doctor was out sick today so I saw the naturopathic doctor who I’ve always really liked–super smart guy and he is American so we have no language barrier. This doctor seems to grasp the depth of my clinical background so doesn’t waste much time with the less important explanations, he dives right into the nitty gritties; with talks of enzymes, layers of the gut, etc. and I appreciate this so much, it makes me understand what they’re doing and why they’re doing it. Being left in the dark when it comes to this kind of stuff doesn’t work with me. Some people would rather not know, and just do as the doctor suggests–but not me. I want as much detail as possible.
Today he had to make the choice of if I am now stable enough for surgery and the liver detox. He can be seen running throughout the Paracelsus buildings at any given time – to be more efficient he just skidded off to the dentists’ office (he is so quick “walking” isn’t the right word to use) and went to talk to the dentist about me having surgery. It is a go.
They scheduled the surgery for Wednesday. When the Naturopath looked at my panoramic xray from December, it showed a sinus infection on one side. This makes sense given I had a head cold over Christmas. He wants to play it safe with the surgery so he is also going to to be to do neural therapy injections all week into my sinus cavities, and he added daily thyme infusions too, explaining that thyme is the most powerful herb for sinus infections, so I’ll be doing this for 20 minutes daily.
He also changed the type of IVs for this week. I’ll be doing “up building” infusions instead of the detox and lyme infusions. The goal is for my last week is to to give my body all it can take to build up my immune system and strength as much as possible. We don’t want to give my body any additional reason to flare up. He noticed that my body is easily knocked off balance and I’m very sensitive to therapies. I couldn’t agree more. This surgery will be enough for my body to deal with and he doesn’t want me to leave Friday crawling out the door because I can’t walk. I can tell you I won’t be scooting along as fast as he does when I leave on Friday, but I will do a happy dance in my head on my last day out these doors.
We got the last of my lab results. They hadn’t shown up in the computer, so he made some calls and finally got his hands on them. This last set of results were allergy tests and I am excited to tell you that I really don’t have any! I love food so much it would just be cruel to throw allergies into the mix.
However, with that being said I did suspect suspicion one intolerance. A year after I was bitten and my symptoms were becoming unbearable and no one could diagnose and help me, I decided I needed to act on my own. In doing so I started an elimination-challenge diet so I was able to determine foods that trigger symptoms and I was successful at figuring out what my body would or would not tolerate.
So, there is one allergy that came up positive and it was of no surprise. This isn’t an allergy per-say (as in celiac disease) to gluten but I can be sensitive and reactive to it. Because of this I to be cautious of it and avoid it when possible. This is nothing new for me. In 2015 I identified that gluten was a strong trigger for my symptoms to flare up. Thanks to my knowledge as a Registered Dietitian I was able to do a lot for myself to get through this the best I could, given in the circumstances. Would I turn down a delicious piece of dessert made with wheat and (of course) sugar? If you don’t know the answer, you don’t know me well. Dessert on special occasions or the odd Dairy Queen blizzard do happen.
On a much more serious note the tests show I have mold exposure, and even worse is that some species are at toxic levels so it is important to deal with this.
There are a couple of ways:
One is through using a cholesterol-lowering medicine, often cholestyramine is prescribed. The mold binds to bile in our gut but then just gets reabsorbed again, so the idea is to take something that will make you excrete bile. I’ve asked to take the alternative medicine route for this and he’s given me three non-pharmaceutical meds for it.
The new plan for this week will be the change my IVs, and we will also daily neural therapy directed to my intestines because of the inflammation, mold and Candida. We’ll continue the injections to my adrenals and add the sinus cavities. If you’re wondering how you reach the sinus cavity? The needle goes in and up through the mouth, not the cheek.
I saw the same doctor again first thing this morning. We talked more about the alkalinity in my gut and there aren’t a heck of a lot of ways I can improve this. They’ve already prescribed some homeopathic meds, one thing I can do is consume more lactic acid-producing bacteria through foods and/or probiotics. These are the healthy bacteria we want in our gut. He suggested rechecking the pH level again in 6 months at home. The pH of my blood wasn’t done for some reason while I was here, but he suggested doing this at home rather than spending the money on it here.
I asked about purchasing a laser light therapy device that clips onto the nose. Another patient has one and found it helpful; she doesn’t have Lyme Disease, but many people can benefit from the effects. He wasn’t able to objectively say if this would be effective or not, but he suggested a pulsating magnetic field device if I wanted to invest in something, as it can also help the body in many ways, and everyone can use it. I’m considering investing in one, especially because it can be very helpful for pain (not to mention healing) but they are roughly $3000CHF so it is something we’ll consider later down the road; I can always order it and have them ship it. I’ve checked online and didn’t find much for purchase and it is hard to know what the quality of the machine is so this seems like a decent price if we decided to purchase one.
My other appointments today included the thyme oil inhalation. It is simple, all I did was hold a device in my mouth and breath while the essential oil was diffusing. It was STRONG, and I needed a few breaks. The rest of my day was typical: infusion, ozone, IHHT, local hyperthermia to my abdomen, a hot compress with yarrow and other herbs to my liver and a trigger point massage. I felt bad for the girl who did this–she did a great job but I could tell how hard she was pushing. It didn’t hurt me at all; my neck and shoulders feel like a sailor tied them into complicated, impossible knots and she likely needs a hand and arm massage now.
Well, it happened… I made it to the dentist for surgery! Before it began, they drew quite a bit of blood so that they could remove the platelets. Once the cavitations were open, they used the platelets to pack it before stitching it back up. They also took an extra vial to continue to monitor my white blood cell counts and inflammation markers.
The dental work went the same as last time, lots of injections to freeze both the top and bottom… about eight needle pokes. At least after the first few you don’t feel the rest very much. The surgery didn’t hurt at all, but as always the sounds the instruments make are awful. The assistant did a good job distracting me too, she kept stabbing me with the suction from time to time. I dare to say she wasn’t the best assistant I’ve had in a dentist’s chair.
After the dentist I saw my lead doctor for the medication orders and any last questions. One thing I’ve come to realize, and he was frank about this from the start of today’s appointment: there is a long way to go and it will be slow and I will continue to have ups and downs. The bright side is that at least I’m prepared for the long, bumpy road ahead… it is the path I’ve been on since 2014, so I’ve had time to adjust and get used to it.
There has been one question other patients keep asking me this week…. keep in mind most people do two weeks of therapy at Paracelsus, so you interact with the same people regularly–and you may even see them at your hotel at night. They all know it is my 4th and final week and keep asking:
“do you feel like treatments helped?”
I don’t have the right answer to this question.
I have nothing to compare it to.
I’ve never been off antibiotics this long so I don’t know how I’d feel otherwise.
How will I know if this new path in functional and natural medicine has worked?
All we can do is watch and see how the next few months roll out and monitor any progress or fallbacks I have. There is nothing that we can fix overnight, or even fix easily. All I can do is be glad for the parts of my body that work are still working and not adding to my list of problems. As I write this, I realize that I need to be prepared for highs and lows at home. I’ve noticed now that when I’m not doing well, I get cranky. I try not to… but it is hard, and as a heads up to anyone who I come in contact with, if I am distant and disengaged I might be having a hard time and it’ll pass.
Managing at home will be challenging. Unless you have enough disposable income to come back to the clinic a few times a year, there is a lot you need to do on your own. I will continue to take a lot of care in terms of what I eat and drink… more so than I already do; I am already strict on what foods I put in my body, except the ODD blizzard or dessert!
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Three months after I get home I will reevaluate how I’m feeling, make adjustments and pay close attention. I think this also means I need to go back to a symptom journal, with details about supplements and meds too. Some of what they prescribed is for 1, 3, 6 or even 12 months. If I stop something at the third month and realize I felt a lot better when I was taking it–then I need to add it back.
To get rid of heavy metals, I was hoping the doctor would give me an intensive plan to try six-to-nine months from now when I am stable enough. However, this is something that is much more specific to each individual and it takes trial and error. Ultimately, he wasn’t able to provide one–but he has given me some resources he likes to use so I can try to make these decisions for myself with the help of my family doctor to ensure my safety.
I asked about being able to discontinue lyrica and lamictal. He feels it is entirely possible and though nerves cells take 3-5 years to change over and heal, his prediction is that I might be able to get off these meds in the next 8-12 months… VERY SLOWLY. If I were to do Procaine infusions at home, they can be helpful in terms of managing and reducing pain and combating the systemic inflammation I’ve been battling the last 3 or 4 years. Some days it blows my mind that is has been going on for so long.
He wrote instructions and even drew on me to illustrate the injection points for neural therapy so that we can continue these at home. He took pictures of the drawings on my skin to help my doctor find the correct injection sites. Another med he suggested that I start is low-dose naltrexone (LDN), this is something many people with Lyme take and it has helped a lot of people, so I’m crossing my fingers for the same. He wrote instructions for starting LDN and a titration schedule to reach the full dose. Another recommendation was to use a hyperbaric chamber if I can get access to one.
Beyond the oral meds/supplements I’ll be doing infusions at home. One is a “Lyme infusion” and the other is a detox/high dose vitamin C. I’ll also be doing procaine infusions. If things go as he’s suggesting I will have infusions 1-2 times per week.
On Friday I will pick up everything from the pharmacy. When I did the order I only requested a small quantity of some things; many supplements are available in Canada or North America. Once I am home, I will search online and find the best price.
Today was otherwise uneventful, except that I am in a lot of pain and am severely weak. I’ve been clinging to the handrails and using the elevator. My labs came back, and it turns out my WBC count went up even more overnight before they even did the dental work. It is clear my body is fighting hard while I’ve been here… either against some kind of bug or virus I picked up… or it is my body’s reaction to the therapies. I cross my fingers it’s the latter of the two. Hopefully I am stronger tomorrow and feeling a lot better.
Other therapies today were oxyvein, an infusion, deep oszillization, magnetic field, thyme inhalation and PAP-IMI.
I slept horribly, waking every 15 to 20 minutes in throughout the night with pain. Every adjustment I made would hurt enough to wake me up. I was so exhausted I must’ve looked like a zombie when I hauled my butt out of bed at 5:45AM, but getting out and being tired seemed better than laying there waiting until a more appropriate time to wake.
My day at the clinic was scheduled to start late in the morning, I wanted to drop a post card off down the street (which is also a BIG hill) but knew I had no chance of getting up and down that hill with the condition my legs were in. Every step I’ve taken today has felt like my legs are made of jello and I’m uneasy on my feet. I’m not confident I won’t just collapse with my next move.
The first appointment started with TANS… this is part of the heart rate monitor assessment I did in the beginning. I really like the man in charge of this part; he is so easy to talk to and you can feel his empathy. I expressed how I have a hard time prioritizing what I truly need to be doing and seem to never get things done. He pulled out a worksheet, and we filled out together. It was based on emotions and triggers and from there I could identify the things that will “feed my soul” vs. the things I only think are important.
Next I had ozone, but the nurse set up a lyme infusion set up instead. Earlier this week the doctor wanted to omit the Lyme infusion and stick to up-building infusions. She made a phone call and in the end continued to run it, but added anti-inflammatories. We started late due to the mix-up, which meant I was late for my next appointment. I rushed to the thyme inhalation then only had about 30 minutes to eat–this wouldn’t be an issue but I have meds that need to be taken 15 minutes before eating and my ability to eat is lame due to the dental surgery earlier.
I ate what I could and rushed off to my dentist appointment for 1pm. After going to the appointment I wondered why it was even on my schedule? He looked in my mouth and seemed pleased with the work from the day before. Him and his dental assistant had started to speak in Swiss-German, so I tuned them out for a minute or two–then wondered what they were talking about. I paid attention and realized they were discussing his schedule for when I would come back to remove the stitches. I kindly interrupted them, saying that I leave in two days, so I would contact my dentist at home. This suited him fine – I grabbed his card to pass onto my dentist and that was the end of it. I could’ve had more time to eat after all.
Of course after rushing to the dentist I now had spare time, so I stopped at the pharmacy. There is a small snack food selection and I still was feeling weak and shaky… although I avoid sugar I figured it might help a bit to have a mini sugar high to propel me into the afternoon. I settled with cinnamon chocolate almonds.
And who am I kidding?
This was most likely an episode of emotional eating too. I’ve about had enough of all of this, which is an understatement. I can’t wait to be free of this.
Next I had IHHT, I stayed awake and read. After finishing three books while I’ve been here I took the short train ride into St. Gallen on the weekend and went to the bookstore to grab a new novel in case I finished the last book I was reading. My purchase came in handy! I bought a super thick novel: Angles and Demons- it’s part of the Da Vinci’s Code series, and I am now over the first quarter of the book. It has been 3 days.
My body feels heavy like lead and I still feel like a bag of garbage, ascending and descending through the building with the elevator because I couldn’t trust my legs again. I saw the Naturopathic Doctor and told him I felt like hell- I was up throughout the night in pain. It was running through my tendons and joints; like fire spewing rampantly inside of me and my skin even hurts, so I asked to forgo any neural therapy … I felt breakable. That sounds strange, but I can only describe it by saying it seemed as though one more poke would shatter me. He was great and had a nurse come in to do blood work right away and gave me a syringe full of some kind of homeopathic liquid to take then and every hour afterwards. I had to pop more Tylenol too. We canceled the next treatment that afternoon so I could go back and rest in the hotel… and pack.
What kind of homeopathic liquid was it?
I have no idea. I felt too weak to care and was willing to try anything at that point.
My labs came back while I was still in his office. My WBCs are coming back down, but the inflammation markers are trending upwards again. I’ve gotten so used to this “cycling” that I could place bets on when the inflammation markers are going up, it is easy for me to tell now when there is systemic inflammation within my body.
My last day!
I had an early morning at the clinic, and needed to bring all of my luggage with me, which is a lot. My time away has added up to seven weeks, plus it is winter so not only do I have my fair share of luggage, I packed heavier, warm items like cozy sweaters. I haven’t even picked my meds up from the pharmacy yet. My day started at the clinic at 7:30 this morning with oxyvein and an infusion.
I asked which infusion it was and she told me it was selenium, still feeling horrible, I asked her to call the doctor and see if it was ok to add procaine and vitamin C… whatever my body is going through it needed extra support. The doctor had them do a build up infusion instead with procaine.
To my surprise he popped in to see me, his white lab coat flying along behind him like a superhero cape. He decided to keep my IV in so I could come back for another infusion this afternoon. We will run selenium still, because of the dental surgery. He said in clinical settings selenium has been used intravenously for sepsis, so administering it can help to avoid the possibility of an infection secondary to dental surgery.
Afterwards I was supposed to have my last colonic – but they had issues with the water and only had cold water available. Yikes. They improvised with just a regular enema before they repopulated my gut with healthy bacterial. As expected it’s injected rectally.
The rest of the afternoon was just two therapies, PAP-IMI and magnetic field. I had a final meeting with my doctor, the same one who checked on me this morning. We didn’t go over much, and I didn’t bring up my last few questions. It was clear I wasn’t having a great day, again – and I just wanted to leave. It was a quick appointment and I could head out early. An hour later I had an email from the doctor, asking me to email him on Monday and let him know how I am doing.
I stopped into the pharmacy next and left with a full duffle bag of meds. They provide one bag for free (it even has an extendable handle and wheels), and I’m going to have to check a second bag at the airport – that much is very clear. I went to the accounting department to settle my bill. For the meds, everything I’ve taken over the last seven weeks plus what I am bringing home it came to $7400 CDN. All therapies and appointments were about $50,000 CDN.
My original plan was to get a taxi to take me from clinic to where the train stops, then it is only a 10 minute trip into St. Gallen where I would meet Stephen’s cousin. The ‘old me’ would have had no problem managing this and all the bags on my own, but I had to accept I couldn’t do it and spent a lot of money to take a taxi straight to St. Gallen instead. I still met with Stephen’s cousin who helped with my bags and we took the train back to Uzwil, where Stephen’s grandma lives, and she picked us up at the train station.
My mood improved a lot. I felt lighter, despite over 100lbs in a luggage – leaving the clinic was liberating. Just knowing I’m not enduring another week of needles and fevers and everything else is a good thing. It is a great thing.
I finished my day by having dinner with Stephen’s grandma and cousin, then going to bed. Very early. At least Gromi goes to bed at 8pm so I didn’t feel bad doing the same!
The Next Day
I slept 11 hours last night. I feel more rested today due to the solid sleep I had last night; before going to bed I turned the blinds, so they’d black out every single bit of light (I didn’t have this option at the hotel) and it helped me sleep for as long as I needed it.
My physical self isn’t better yet. Lifting my foot into the shower and undressing/dressing is hard. I will have to continue to take lots of Tylenol through the next few days until it all passes so I can at least manage a ‘comfortable’ flight home.
Is there such a thing as comfortable when you have Lyme Disease?
In a few hours I am going up a mountain with Stephens’ cousins. It is called Hoher Kasten and it’s a seriously steep hike to get to the top, so it will take us a few hours.
Just kidding! If I could hike up a Swiss Mountain today I’d be telling the world that Paracelsus performs miracles. To get to the top of the mountain, we will take a gondola. Once we’re there we will have lunch and then I’ll go back to Stephen’s grandma’s for the rest of the day to rest. Tomorrow Stephen’s youngest cousin and I are going on a mini adventure to Bern and Zermatt. My only other plan for today is to look over all the meds I bought to make sure everything is as it should be.
In less than two weeks we will be travelling back to Switzerland. Near the end of June I spoke with my doctor as part of our routine phone call follow ups, based on the symptoms I’ve been experiencing he felt that my immune system just hasn’t started to work yet. This is scary… if my immune system isn’t doing its job my body is left vulnerable to the bacteria and they are able to reproduce without my body defending itself against them.
I had originally thought I would go back to Paracelsus, but not until later this year, perhaps in November. The doctor was solemn when he told me that he felt I needed to come back as soon as I could, that waiting would be a bad idea. Overwhelmed, I spoke to my husband about it and he agreed; we need to get and keep ahead of this as much as possible. Going back to Paracelsus before things get much worse is our best plan of action at the moment.
I’ll be writing more about this upcoming trip soon (I hope!), I would like to have it posted before I leave in a couple of weeks. For my upcoming visit to Paracelsus I don’t plan to keep daily journals that are this detailed, but I will do my best to capture the experience again in a way that might be helpful to others who are going down this path. This time around my husband will also be able to stay the entire time with me, we will be away for two and a half weeks. I am so happy he can be there with me, not just for his support – but to be able to advocate for me, as well as make sure that there is nothing lost in translation when it comes to the German-speaking doctors at Paracelsus.
Hey I am planning to go to the clinic.. just want to say I am surprised that you take Tylenol as it is not good for the liver or gut biome. Was the clinic aware that you were taking it?
I don’t take Tylenol often, but if my pain levels are at a 7/10 or higher I do. It’s the lesser of two evils if you consider taking narcotics in its place, it’s also counterproductive to be in too much pain as well. Since my first visit we’ve also been trying to decrease the meds I take for neurological pain, and at a point it was decreased further than my body could handle. I was in horrible pain all day and night, my doctor told me to increase those meds – for the same reason, pain like that isn’t conducive to healing. They have a “there’s a time and a place” attitude for pharmaceutical medication, even antibiotics.
Good luck Sara I hope the best for you,and seeing you at your Grandmother’s house during art’s passing was nice I thought you looked very good and I only wish you the best during this time in your life.
my prayers be with you
Thanks so much Sheila!