Despite how happy I look in the picture above (the location is Hoher Kasten) , this photo was taken after my four weeks at Paracelsus was complete… I had good reason to be happy! Week three of treatment at Paracelsus didn’t get easier. In fact, from this point it was a slow downward trend for me. I was worn out, mentally and physically. My days were still busy, and I was still getting more test results back. The first two days of this week are packed full of information so this blog post only covers one and a half days. Soon I’ll be posting the second half of my third week. If you’ve missed the previous posts you can check them out by clicking on any of these links:
So there you have it! You’re caught up and we’re moving into week three and in the same fashion I’m sharing my daily journals with you.
I can’t believe it’s only been 10 days; it seems so much longer. I got through my wicked flare up this weekend; I am still weak and can’t lift my legs, it feels like I’m going to drop to the ground, so I need to be slow and cautious on the stairs. This morning I did magnetic field therapy on my head, oxy-vein and the Lyme Infusion plus selenium, followed by a visit with my doctor. We continued neural therapy; she did about 10 spots for my neck which was still stiff and sore from my flare up. She also did one injection at my C7 (last vertebra of my cervical spine / neck) which I thought would pinch like hell but it was not too bad.
Over the weekend as part of the massive flare, I had a lot of distension (swelling) in my stomach. It was sticking out a lot again, especially after eating. As you can imagine, it is uncomfortable. My doctor did neural injections along 5 intestinal points and then the scars on my stomach too, another 5 points, finally she finished on my face with injection points along my TMJ because my jaw also gets incredibly tight with all the pressure in my head and neck. For the tightness she did three injections down the side of my face… two for the TMJ and one for the masseter muscles (which is affected by clenching or grinding). My problem is jaw clenching, which is a ‘new’ learned behavior for me the last couple years–it has come hand in hand with the pain and everything else I’ve been dealing with. I’ve noticed for a year or more now that I’m always clenching my jaw. Once I am home I’ll go to the dentist to get fitted for a night guard.
We spoke about the live cell extracts that Dr. Rau recommended. She didn’t share his recommendation for it. She explained that for the price she doesn’t think it is necessary and would benefit me so much that it is worth $500CHF (approx. $645 CAD) DAILY. She mentioned that she thinks Dr. Rau forgets about money and budgets. Her explanation was that if someone came with an unlimited budget, then cell extracts are definitely ok to go ahead with.
I can’t lie, this made me uneasy.
I wasn’t sure if it was a language barrier that had me reading into this conversation? Both of my doctors are leaving the clinic, and I didn’t ask why–I don’t think it is necessarily my business. I’ve learnt that a few doctors have left Paracelsus and rumor has it someone is opening a similar biological medicine clinic not to far away.
I’ve been in a funky mood since Friday and the aftermath of my horrible day, so I am sure this is me being extra critical and over-thinking everything. Tomorrow I plan to talk to both doctors and find out if it would make an enormous difference, or if it’s something my body can manage on its own? My gut tells me that (with time) my body can manage this. I want to ask how long it might take my body to do what the cell extracts would do on its own vs. doing the cell extracts? If the progress is only different by 2-4 months, then is it worth another $700 daily? That works out to about $5600 over the rest of my stay. I know it isn’t all about money, but it is still a huge factor. I can’t help but choke when I look at our payment from last week of $19,838.60 CDN. Tomorrow I go back to accounting and see what the next down payment will be. These totals are before meds are included and I’ve been told the meds can be up to $10,000 CHF.
While I was still in with the doctor we discussed how my hyperthermia treatment went and I explained how I felt like I was suffocating. She brought up from my 2nd morning in her office at Paracelsus. That was the day I was in tears. I was scared. No, I was terrified – it is as though something has crawled up my stomach and into my throat and it’s strangling me from the inside. It’s not that I don’t trust what I am doing here at Paracelsus or trust they know what they’re doing; I am terrified that once I am home I’ll slide backwards. I can’t become that sick again, I can’t be confined to my bed or couch, unable to move on my own. Once I am home I’ll continue their homeopathic and supplement orders and I am pretty sure I’ll have weekly IVs. This is a big change from daily IVs which I’ve been doing here. I also won’t be getting the other therapies that might be helping to get me through these days while I am here. My fear is in not knowing how I will be in one, three, six, twelve months.
Is my body able to recover and do what it should’ve in 2014 and keep me from getting sick again?
I had another hyperthermia session this afternoon, NOT the three hour one–this was IRA-Therm, which is only an hour and I’ve done it like a champ the last two times. When I was in the doctor’s office this morning she thought I felt fevered, which I now realize I was: I started IRA-Therm at 37.0°C and I went to 38.9°C which is more than the goal of 38.5°C.
I found when it got hot I had the same hard time as I did in whole-body hyperthermia, but it was slightly easier. The first reason is probably because I wasn’t zipped in a box and the second reason is because the nurse could help better by regularly putting a cold cloth on my face and pass me more water.
Suddenly I thought I could empathize with those lobsters who’re tossed into boiling water.
I felt like I was boiling from the inside out, and sadness started, tears just naturally fell. I tried to talk myself through it and did a lot better than Friday… but I also had feelings of anger pop up, with some specific thoughts of people who I’ve been hurt or let down by during my dance with this illness. Next I was annoyed by another patient of the clinic who’d sat at the lunch table across from me today. It’s a small cafeteria so you sit with different patients each day. Today I sat with two people I knew a bit better from the last week and one other guy. I was having a hard time getting my words out at lunch: I was having word-finding difficulties and it was hard to communicate. I knew I wanted to say ‘cauliflower’ but I searched my head over and over for the word and it wasn’t coming. This happened several times. After learning I was a dietitian and didn’t eat meat, he asked where I got B12 from: a completely valid question and an easy answer–but I couldn’t, my brain couldn’t. Anyway, during my fit of anger during hyperthermia I was irked by this question he asked. I realize it was actually frustration with myself because I’ve been having a very hard time finding my words today and that conversation was a prime example of that, and reminds me I have a long way to go to get my health back.
During the IRA-Therm session, when the heat was at the highest I just wanted to tell the nurse:
“I need to stop,” and
“I’m done, I can’t do it,”
I wanted to be home more than anything else. I thought about cancelling next week and changing my flight to come back sooner; I was feeling truly sorry for myself about being here instead of being grateful that I can be here. Luckily the nurse informed me it was time to decrease the strength and temperature of the treatment, I was still having a hard time but just knowing the end was coming I gained control again.
After IRA-Therm I had both Schondorf Therapy and Deep Oszillation, plus another colonic. For the liver cleanse week we’re scheduled for two colonics… lucky, right? This was the end of my long day and on the taxi back to the hotel I couldn’t help but reflect on the fact that I had about 20 needles today and two different people stick something in my butt (to clarify, I am referring to a thermometer and colonic tubing), and somehow even that becomes less and less awkward too.
It is almost unfathomable that I am only 11 days in. To be truthful, I have to admit that I took an Ativan when I got back to my hotel today and wish I’d have taken one during the day too.
I am the person who always tries my hardest not to cry. I did that all day long, I had to fight back tears all day. This is hell… I am physically and emotionally exhausted. The flare from the weekend was still lingering and causing issues and I’d had IRA-Therm heat treatment yesterday as well. I can’t help but think of quitting and coming home; I question if I have the strength and the will to suck it up and stick this out. I keep telling myself if I could rest more than, yes-I could do this. Going into today I was very exhausted, emotional, fevered (on day #5), and just feeling like crap.
Last night I was fast asleep by 8pm and slept until 7am today, despite all of my 10-11 hour sleeps I am not waking up rested. Through some of the testing I now know this is because my sympathetic nervous system isn’t working as it should and I don’t get REM sleep, and it is during the REM cycle when your body heals and recovers.
During my appointment with Mr. Folkner today we talked more about my sleep… I’ve also been waking up at 2am again thinking it is time to get up and start the day. Mr. Folkner said it is a good sign: the sympathetic nervous system is trying to push into gear. He also mentioned that it is good this is happening at 2am, instead of earlier: we get our most important sleep time between 11pm and 2am.
We talked about my awful hyperthermia experience last week and the day before. He explained that when a person like myself is functioning primarily within the parasympathetic nervous system, when we’re exposed to higher temperatures swelling is “normal” because it is activating the parasympathetic nervous system. For people who function opposite of me in the sympathetic nervous system, using hyperthermia can trick the body into a parasympathetic state, this is another reason it might have been too much for my body.
(If you’re a bit lost when you read about the nervous system, you can click here to go back to the blog with these test results and I explain it in a lot more detail)
Like most of our sessions my heart rate it monitored throughout. With focused breathing my body (normally) switches into a parasympathetic state quite fast, but today it was opposite and staying in the sympathetic zone. But, like I said: I am not feeling well today, it was like I was about to wobble off his chair, swaying side to side. And I am on fire. This fever is not going away. During the focused breathing I stopped to comment that my body wasn’t switching over to the parasympathetic nervous system and he agreed; we attribute it to my fever and how exhausted I am. Feeling comfortable with him, I voiced my concerns and said I wanted to have the doctors unclutter my schedule so I could have more time to rest. He agreed and said he would also send a note to the doctors.
To ‘force’ the autonomic nervous system to “reset” (if only it was that simple) some things that are important include deep breathing 5-6 times through the day, for a few minutes each time. He also said I could try physical activity: light body weight exercises and a treadmill or stationary bike where I can lightly walk or spin to will help get my cardiovascular and respiratory systems built back up. From using antibiotics for so long I’ve experienced mitochondrial damage, which means even a set of eight lunges leaves me feeling like I completed an iron-man with little training. Because of this, integrating physical activity on any level is difficult
One thing that is super cool is that I’ll get music made with my own heartbeat. During all of our sessions my HR is monitored. From the samples of my HR, a window of time is chosen where my HR rhythm is really fluid and it is incorporated into three kinds of audio files, similar to “spa-music” but with my own heart beat; click the play button below to check it out.
Part of the ‘liver cleanse week’ is having a hot compress done, for me that was today and it is essentially lotion and heat applied over the liver. I met with the nutritionist who gave me results of the stool test:
Overall my gut is too alkaline, there is not enough acidity in my gut. In terms of the bacterial balance mine is mostly in the health range, *ahem*, BIG pat on the back to me, please! All of my diet and probiotic use helped me out immensely, and this is evidence of that!
They are are broken down into different categories of bacteria and then more specific ones are listed within each category, testing for a total of 17 bacteria and a 4 fungi. The tests also look at malabsorption, inflammation, overall food allergy, intestinal inflammatory markers and immunity in the intestine. One important thing to know is that our intestine contains up to 70% of our immune system, this is just one reason our gut health is so, soooo important, and it is also something I want to write more about in the future (and if you have questions about this topic, leave them in the comments or send me an email so I can will address them!)
Out of the 17 bacteria tested I have low levels of two, and too much of one, the remaining 14 strains are within the healthy level (again, big pat on the back to what I’ve put into my body and how my body has handled these last few years). In terms of the four fungi, one species of candida is elevated which does not surprise me; for many of us “Lymies” this is common and it is something we can correct with time and dedication.
Next the test looks as inflammation and what I mean by this is that we’re looking for “leaky gut” or, as I prefer to call it, intestinal hyper-permeability. Before I knew why I was sick back in 2015, I did my own research and part of that included leaky gut. I put together a plan for myself with diet and supplements to help repair any damage, which I continued for approximately one year before I was diagnosed and started my 1.5 year run of IV and oral antibiotics. During that time, I kept on top of managing leaky gut and I was pretty successful according to these results. I had marginal inflammation–which means I only have “slightly leaky gut” according to one of my Paracelsus doctors. Can I get another virtual pat on the back, please?
The last part of the results relates to the immune cells in the intestine. No surprise about what I’m about to tell you:
My immune system was too low to measure.
This is a huge downfall. There are a lot of reasons this is terrible news–one reason is that I need to keep myself free from catching others’ colds and germs because my body won’t have a lot of defense against them. I need to be careful about washing my hands lots and minimizing my exposure to germs. With that being said, I have to mention how I feel about flying home in a couple weeks: I’m worried, especially because the influenza virus is really awful this year and healthy adults have died as a result of the flu.
I knew as part of coming to Paracelsus, one of the goals we would work towards would be to rebuild my gut, but it was interesting to learn about it from an objective and quantifiable standpoint.
After lunch I made another down-payment… so far excluding the dental work, my assessment or the meds I’ll be bringing home my first two weeks has cost $20,700.00 CHF, which is about $26,910.00 CAD.
Stay tuned for the next post about the second half of my third week, and if you haven’t already you can sign up for my newsletter and I’ll deliver new posts straight to your inbox!