As my Lyme Disease treatment days continue at Paracelsus, my daily journals get longer. Week two had a rough ending. On Friday I met with Dr. Rau who explained more of the results, I left his office feeling sad and broken, then that afternoon I had my first (and only) whole body hyperthermia experience.
When they planned for hyperthermia there was a bit of an oversight which you’ll read about in later posts, but the fever that was induced went too high sending me into a spiral downward. It was a physically and emotionally difficult experience.
Today was a short day, which is nice–I even went for a short walk in the morning. First thing at the clinic I saw my doctor again. I happily told her that my wrist did not get worse and had no pain. Had this been at home it would have most definitely gotten worse as per usual. She wanted to do the same procaine injections with selenium but also added some other homeopathic meds because my wrist was now very hot to the touch. She continued like the last time and wanted to do the ganglion in my neck again, and of course the scars from my central line too.
Next she said:
“We should do ozone [like I get in my infusions] rectally,” …
I said, “ok”
Then thought about what she said for a moment and replied again:
“Wait, did I understand you correct?… Did you say rectally?”
Yes she did.
Gas is supposed to come out, not go in?! This would be interesting.
The tubing was much smaller than the colonic tube so I was ok with that and I understand the intestinal tissue will absorb the gas and that it’s faster than using the IV to get to its target: my liver. I had 50% of the typical dose injected and it just felt like gas… but she told me to hold it. Easier said than done.
As soon as I sat up and got back to sit at the desk I took my glasses off thinking they must be incredibly dirty, I couldn’t see through them. Then I thought my eye was swollen, she looked at me and quickly explained I reacted differently to the ganglion injection than I did the day prior and that it’s a very strong point that leads to many nerves.
Oh $h!t… now I am wondering what the heck she did to me and if I should run away panicking.
Yesterday I felt the injection in my shoulder. I didn’t today. As time passed my face felt increasingly strange. My pupil was also shrinking, making the blurred vision “normal” for the reaction I was having. Here is the reason: this nerve bundle can be very close to the central nervous system and some nerves run to my face which was a bit tingly on one side. It also caused a slight (and temporary) lazy eye.
The doctor explained more about the issues I’ve been having in my neck. It is possible that when I was in a car accident 8 years ago I suffered a lot more from whiplash than we could see through imaging studies: although MRIs, X-rays, etc had shown no structural problems, there can be a lot of restriction and tightening of the muscles in the neck that will affect this part of the nerve bundle and ultimately effect where those nerves run: arms, face, abdomen, GI system. With further injections I hope to find more permanent relief in my neck… but I’m not sure if that will be short lived without these injections at home.
I also realize I’ve misplaced my jacket but I am sure it’s in her office. So far since starting in the clinic I keep losing things: my glasses, my book and now jacket. All of which I’ve found but I am having a hard time, enough so that some of the older ladies who I see in passing have noticed and say “we need to keep an eye on you”… not a bad idea.
My day was easier this afternoon with an infusion and ozone and then I-Therm which allowed me to just lay back and read by book while the two ‘hot plates’ worked their magic along my mid back up to my neck.
I’ve also asked if there was a schedule for my infusions. From what I understand the week is typically structured with:
lyme – detox – selenium and procaine – lyme – detox
Today was a rough, really rough day. It was an easy start with IHHT (the alien mask), next was PAP-IMI so I read my book through all of this. Next I was scheduled to see Dr. Rau which I was nervous about. Nervous of what he might reveal about my health? … I’m not sure? Maybe I was excited and nervous to learn what he had to tell me?
My anxious excitement left me feeling hallow and broken on the inside after seeing him. It seems like more and more pieces of me are broken and dysfunctional. In a way, I’m glad for more answers to the pieces of the puzzle as to why I got so sick, but it also makes me feel like I’m broken on a level no one can see and it makes me sad and maybe even a little hopeless feeling.
As I write this I suppose it’s not a coincidence that a song from the late 90’s came on called “You Get What You Give”
“Don’t give up, you’ve got a reason to live. Don’t give up, you only get what you give,”
Dr. Rau explained that more tests came back, and my adrenal function is severely shot. My body has been under massive stress for too long and it’s caused a severe issue with my adrenal glands. My adrenalin levels are way to high… and not in the sense where people talk of “adrenalin rushes” and I could go lift a car right now. I only wish it gave me Super Woman strength instead.
What does it mean? That my body is in a constant state of stress and inflammation. It’s also related to the fact I have a lot of inflammation in my intestine (not surprising with antibiotic use). He explained a bit about the severe imbalance in my ANS. The parasympathetic is way over worked and also that also translates into gut inflammation too. It is basically a vicious cycle.
The newly diagnosed Hashimotos (Hashimotos is an autoimmune condition where the body attacks the thyroid and can cause hypothyroidism) is a big issue with much of this too: the adrenal glands and thyroid are all part of the endocrine system which means hormones are involved. In my live blood analysis she mentioned it might illustrate hormone imbalances though labs tests showed mine were normal. It is a question I will ask about next week.
Either way, this is a big piece that ties things together. Dr Rau suggested live organ cell extracts – in which live cells are injected to influence the body to improve function in the area injected and recover.
He wants to do these cell injections to the adrenals, thymus, and I assume my thyroid. This can also play a small role in repairing my autonomic nervous system…. it’s similar in theory to stem cell transplants, except stem cells are live cells and in OCE (organ cell extracts) are extracted compounds from the cells. The info sheet describes it as this:
The cell transplants incorporate biological information featured in an organ (such as the thymus, liver, etc) and contain the natural, active substances like enzymes, hormones, peptides… whatever the cells use to function. With injections the damaged tissue can be renewed. Injections can be over several days or weeks and up to 20 injections. Often subjective symptoms improve (such as better sleep, digestion, etc) but lab tests and image studies can also improve. The extracted compounds that are injected become incorporated into the body’s own cells and the enzymatic and genetic activity of cell metabolism is supported and reinforced. Injections are done intramuscularly and 2-3 different organ cells are used, but not on the same day.
I have no idea what the cost of this is and I’m afraid to find out. I suppose it can’t be too bad? My guess is $500 CHF per session. By cancelling my weekly kinesiology and psychotherapy sessions I’m saving about $480 CHF per week and I’ve been bringing my own lunches lately saving about $15-20 CHF per day.
Dr. Rau is now leaving to the US to do some teaching … and will be gone through the rest of my time here. He’s relayed all of this and probably more of his thoughts over to my main doctor.
Oh, one other thing: he believes there is an infection in one of my molars. Perfect. Monday I’ll have more blood work done as well to monitor how things are going while I am here. I know for certain they’re monitoring my blood cell counts (RBC’s, WBC’s, platelets, etc) and inflammation markers.
Rolling into the afternoon I had my first whole body hyperthermia treatment. I brought my lunch and sat in the cafeteria (only because I needed to use a fork, I forgot my own) and re-read the info sheet about my upcoming treatment. As soon as I finished my salad, I left to sit somewhere more quiet with an apple to finish my lunch. I’m finding the crowd too much to deal with. Most people (staff and patients) have lunch at noon so it is busy and the noise and “activity” of all the people exhausts and drains me. Most of the conversation is regarding treatments, illness, etc. and I find it is too much to talk sickness all the time. I need to escape as much as possible so lunch in the cafeteria isn’t my favorite place to be.
I went into hyperthermia thinking I’d be OK because I do fine with the other hyperthermia treatment (IRA-Therm). This treatment uses a closed box, made of incredibly heavy canvas that zips the box up into thirds. There is a small window above your head… maybe 6 inches wide by 15-20 inches long. One side of your face looks out to a clear zippered window so that the nurse can see you from the side and top at all times.
You have an IV going the entire time and as per usual you have a rectal thermometer. The IV wasn’t only saline it was the homeopathic lyme infusion. Near the end they gave me a selenium infusion. If there is one trend with Paracelsus, it is lots of needles and tubes or thermometers up your butt. It took two tries to get my IV in. My body isn’t cooperating this week with IVs. When we read my base temperature it was already 37.2C, I was slightly fevered already, but given I was having some “lyme symptoms” a fever didn’t seem unlikely. I was all set and zipped up with Adele playing in the background. The first hour was easy; I slept.
You lay in the bed with a hospital gown and blanket/towel on top. I woke up so thirsty after that first hour and the gown was starting to stick, my temperature was now around 38.5C. My heart rate was monitored the whole time, and I had oxygen on too. This is a three-hour treatment. Two hours of heating up with a fever and then one hour wrapped like a cocoon to very slowly let the body cool off.
At 1 hour and 10 minutes I was having a hard time but I could chill myself out again and make it through the next 10-15 minutes. The nurse was bringing me cold cloths for my head and neck and offering me sips of water. He asked if I wanted different music because Adele was ending, I then realized he was using YouTube to play music so my options were endless: I requested Billie Holiday and tried yet again to relax but couldn’t. I’d get two minutes of being OK followed by panic. The gown was soaked and sticking and basically making me crazy. Trying not to cry, I asked “do you have something to put me back to sleep? I’ll be fine if I can sleep” but they didn’t… at least not without the doctor ordering something. The nurse gave me “Rescue Drops” instead which are supposed to relax you, but I don’t think they helped.
Finally at 1 hour 40 minutes he said the doctor would come in to check on me. My temp had been at 39.9C for a while already. When my doctor came to check he asked how I was and I said “I don’t want to be in here anymore”–they discussed my progression to 39.9C and my HR which was at times going kinda crazy because I’d felt panicked and held my breath. Tears had been fighting their way up for the past 20-30 minutes. I don’t know why and I couldn’t help it. I felt like a child then chastised myself for it. Crying is one thing, but crying makes my nose run and get plugged up which is NOT what I want while I’m already in this box feeling like I am choking. The doctor asked a couple more times how I was and I gave the same answer. I told him I’d be OK if I could sleep through the rest of it… all with tears in my eyes.
Finally he said,
“do you want to be in here anymore?”
and I answered,
I ended about 15 minutes early and because I’d already met the 40C challenge. Stopping 15 minutes early couldn’t have been a big deal, right?
They unzipped the box and then the heavy canvas is wrapped over you. When I say heavy, I mean heavy. I was allowed to keep my hands free so that helped and just knowing I was out of that thing was enough to regain my sanity. They encourage you to go through emotions when you’re in there. The info sheet even discusses that the fever can not only help with infection and removing toxins, but also bring up previous emotional shock. My downfall is that I try not to cry even though it is good to be able to let it out – I can’t. And there was no way I was going to let myself cry with the man who inserted the rectal thermometer sitting beside me.
At this point I was wiggling my fingers to get some swelling out of them and my blood pressure was high enough that the clenching and unclenching of my fists caused the IV attachment to pop off. We tried two more times to get it back in without luck… then moved to the other arm and finally got it in. It would’ve been ok to miss the last of the infusion, but it was supposed to be followed by selenium which they didn’t want me to miss. I got to relax by myself for another 25 minutes to allow my temperature to come back down, this time listening to The Head and The Heart. When it was finally time to get up I couldn’t move my legs because the canvas was so heavy and I was getting weak at this point.
I don’t know yet if I will be scheduled to do another one of these. Just one was scheduled so far. That night I felt fevered off and on (no surprise) but then came a wicked headache, my knee hurt, my ears took their turn ringing off and on…. I had a long 10.5 hour sleep and woke up Saturday feeling like I was hit by a truck. In my opinion the fever brought on a flare up. I continued to be weak, in pain, have a headache from hell, my ears continued to ring, my jaw wouldn’t open well, my neck felt like it was swelling again. The typical neurological pattern weakness came on and it was hard to move my legs on my own. It took regular doses of Tylenol to be somewhat tolerable. I spend the day in bed but needed to get groceries–the store is closed Sunday.
On Saturday I didn’t improve, I felt really weepy and lost. I suppose I could’ve taken an Ativan but in truth I forgot I even had any. Stephen’s cousin came at 5:00 and we had dinner here at the hotel together (she was lucky to eat a plain “liver detox program” diet with me). She brought me her yoga mat which lifted my spirits incredibly. I spent an hour on it before bed. We also planned for my last 5 days before I fly home at the end of the month. We’re going to Bern and Zermatt for an overnight/two day trip, and she will come with me to Zurich the day before I leave; I want to check out the zoo there and a couple other things. I have two other days to do something, so one of those days we’re taking a family trip to where her mom (Stephen’s aunt) is from – it is an old village without car access on the street, so I’m looking forward to that. The other day I plan to go spend with Stephen’s cousin, husband and their baby.
Today (Sunday) I have a small headache but my body still aches, though less (thank goodness). I’m still having weakness that is stopping me from dressing myself, but I’m managing with great difficulty. Tomorrow I see my doctor and can discuss all of this with her.
Yesterday someone sent me a message after keeping track of my story on Instagram; I posted about having a hard day and needing to escape it so I was reading a book from a series that I really enjoy. She looked up the next book in the series, bought it, and messaged me saying she’s mailing it to me on Monday. I thanked her (a lot) and told her I appreciated it but have the book waiting for me at home. She knew from my posts that I still had two more weeks and thought I would enjoy having the next one while I am here and would send it even though I have it at home. Last month I also had a stranger from Texas reach out and want to help with this trip to Switzerland, her generosity made my jaw hit the floor. I truly hope one day I’ll be able to be in a position to do things like this for other people. It amazes me some people can be so kind to strangers. It also gives me hope the world isn’t falling apart with hate and dysfunction.
Have you missed my earlier Paracelsus blogs?
Catch them here: