As promised …here are more of my daily journals from my four weeks at Paracelsus for Lyme Disease treatment. Incase you’ve missed the last few posts you can go back and read more about my time at Paracelsus by clicking on the links below:
Not only do I plan to post my daily journals I am going to do another post summarizing the “problems” we’ve uncovered during my time at Paracelsus. A lot of people are still wondering:
“How are you doing now?”
There is not a good answer for this question. Time is still needed to truly see any changes. l have a lot of responsibility on my shoulders to follow medication orders, do weekly IVs and eat properly to encourage and promote healing. I am also trying very hard to make time for self care – I always find an excuse that something else is more important instead of making my health a priority.
The four weeks I spent at Paracelsus aren’t the cure, they are only the start. The doctors have emphasized to me over and over “trust and be patient”. I continue to keep in contact with one of my doctors from Paracelsus so we can make changes as necessary to keep my plan of care current. One thing that I am proud of is that I’ve been off antibiotics for 13 weeks which is a big step in the right direction after enduing 506 days with an IV central line for intravenous antibiotics.
I moved to a new hotel yesterday. This isn’t technically part of my clinic summaries but I’m thrilled I made the choice to stay at this hotel. It is an old traditional Appenzeller house, but it is all modern and clean. My room is smaller but bright and I still have a view of the Santis but it has been too cloudy the last two days to know what that view looks like. My WIFI isn’t so great when I’m in my room, but that isn’t always a bad thing. I’m taking it as a sign I should “disconnect” more. Breakfast is provided, just like at the previous hotel. This morning they asked if there was something I would like but wasn’t offered and I mentioned it would be nice to have coconut milk yogurt from time to time and they were happy accommodate me. There was gluten-free bread and even rice and soy milk available.
At the last hotel the evening meal is made for you (it is a pre-determined mostly vegetarian menu) and came with soup, an entrée and dessert–the food was good but the portions far too large for me. I’m also a “less is more” kind of girl and I found the food to be dense (it still tasted great!). As much as I love dessert, I don’t want to eat it every night even if it is moderately healthy. I believe that coconut sugar, honey or agave is too much if you’re eating it daily.
This new hotel has a really nice modern guest kitchen with everything I’ll need in it: a Nespresso coffee maker, a French press, a tea pot… plus all the regular kitchen items. I’m happy when I am in the kitchen. Even exhausted and tired, being able to prepare the food I am eating makes me happy. Tonight while I heated leftovers from yesterday (thanks to Stephen’s aunt who is a great cook) I prepped a couple salads to get me through lunch the next two days. The clinic food is expensive. A bowl of soup is $6 CHF and a large plate of salad is $17 CHF.
Otherwise, today was an exhausting day and I couldn’t be more glad it is over. I started at 8:00 and finished at 4:30 and this morning I added two new therapies: Deep oscillation therapy was first–it is a machine with two small round paddles that the therapist uses. It uses an electro-static field between the attachments and the soft tissue. The tissue is attracted and released. This process happens deep within the tissues and lasts longer with the electrostatic waves working on damaged tissues which brings better blood supply to the area. For me this is good for a few reasons: it improves immunity, has an anti-inflammatory effect in the body and it helps reduce swelling and edema from an over-worked lymphatic system.
Next I did my first round of Schondorf Current-Therapy. It reminded me of a TENS machine… two square pads were placed on both my stomach and back and wavelike pulses produce a current that bounce off each other and therefore through me. The current goes deep into muscle and tissue and will help improve blood and lymph circulation and detoxing the tissues, which is key when your body is storing heavy metals. It also positively influences the autonomic nervous system and we know from earlier tests that mine is out of whack.
Last for the morning was another session of IRA-Therm. This time my temperature was a tenth of a degree less (38.5C) and I stayed in for about an hour, then had to sit another 30 minutes wrapped in blankets and a housecoat before I could shower (with warm water). Following that I saw the kinesiologist. Some people really don’t like this type of therapy–it seems far to strange and maybe even to some it seems like a joke but I like it.
After lunch I felt like I hit a wall and was exhausted. My next appointment was Pulsating Magnetic Field Therapy over my liver and kidneys and I can notice the effect of it a lot more compared to last week. I could feel a lot more movement within the smallest spaces in my body. Another thing I’ve noticed is that more and more each day my body is twitching and the twitches are bigger. I’m choosing to believe this is part of the healing process vs. a symptom of the disease. Our bodies are constantly changing and at times those changes are more noticeable than others. With the help of these therapies I hope that toxins and metals are being released from certain areas, or maybe dead cells are being moved through areas they’ve been blocking and these are contributing to the twitches.
My next appointment was for oxy-vein therapy. I’m up to 18 minutes now which is 18cc of pure oxygen (compared to my starting point of 10cc). The goal is to work up to 25 minutes. I was already tired, but this whopped me. While the nurse (Daisy, one of my favourites) was prepping my infusions we chatted but once she was done and started the IV I fell asleep. I’d wake from time to time to adjust myself and was so incredibly groggy. I was told back in December that this might be the case at first but as my body gets used to it, I should become more energetic. At one point 45 minutes after the oxyvein I coughed and immediately felt nauseous and worried I might need to find the nearest trash can. I tried to breathe through it and it passed; I’ve noticed during oxyvein and for a while after it is best to do diaphragmatic breathing rather than taking shorter breaths into the chest only… it makes you feel like you’re choking on air. The nurses brought me another blanket and heating pack and slept through the rest of the IV.
The last appointment of the day was with one of my doctors. She answered a question/concern I had about the thermography results and it turned out that what the results were showing are the computer’s interpretation of my temperature readings, so the results sometimes seem more alarming than they truly are. In the grading for breast dysfunction mine showed severe in the lymphatic load (no surprise given the major part of our lymph system is working in this area and mine isn’t flowing as freely as it should be) but it also showed two other ‘severe’ blocks that made little sense. She explained it as hormonal due to our estrogen levels at the time of the reading. If we did a second one today those spots would look different.
Going back to the thermography results:
The rest of the “severe” markers:
Lymph blockage in the neck and blockages in my upper neck.
Food intolerances or sensitivities
Dysbiosis (this means an imbalance in the good/bad bacteria in the gu, thank you antibiotics!)
Whole body autoimmune patterns
Endocrine disorder (the thyroid and adrenals fit into this category)
TMJ and neck disturbances
Tonsils (there is still tissue remaining there even though they were removed)
Cardiac conduction issues
Pericardium or extracardial stress
The rest of the results were within optimal heat patterns. Based on the abnormal results we’re doing a lot of neural therapy (an injection of procaine + homeopathic meds). The first day focused on my stomach and scars on my stomach and the two from my central line. The second time was in about 10-12 spots in my face and going through my mouth into the sinus cavities.
Today I was hoping we could skip the injections. I felt awful. It felt similar to going through antibiotic protocols at home. One thing my last doctor used was xylitol to break up biofilm. Breaking up the biofilm releases bacteria so it can be killed, and I noticed the gum I bought here has xylitol in it (although I haven’t figured out how much per piece). There is a question of whether I am provoking more of a herx-reaction by releasing more bacteria to be killed during the infusions and heat therapies?
Last week I noticed some unpleasant side effects from the neural therapy injections. The scar on my collarbone is from my central line and it has had a lot of injections. On Friday afternoon it felt like that scar created an anchor and I couldn’t turn my head to the left, especially while I was in the pulsating magnetic field treatment. It was unbelievable how much that scar was stopping me from moving. By the evening I could feel constriction down the length of my arm, my wrist was very sore and there was swelling in my hand. I had strong tingles going down my arm by 9pm Friday that worried me, but I didn’t want to make a big deal of it. I planned to sleep and re-evaluate in the morning. Luckily that passed but my neck was really sore when I woke on Saturday and worse Sunday with a headache. I wasn’t walking as well either by Saturday afternoon. I’ve slowed down a lot. Taking the stairs at the clinic is a huge effort, but I am determined to do it, even when my knees feel like they will pop off.
To work at its best our body needs to move, and that is especially true for the lymphatic system… I keep reminding myself of this. When I told my doctor about the pain and swelling, she said it was a good thing. It means my body is reacting to the injections, showing there is something that is being “blocked” and we need to push through it despite feeling like crap. Pushing forward, I mentally prepared to have my tonsils injected. I knew it was coming for weeks now… and it was one of the easier spots that she’s injected. Twice on each side. From there she moved to two more points on either side of my neck for my tonsils, three spots over my thyroid, and across the “lymph belt”… which is about five spots on each side of my neck finishing over my collar bones. We also did both the scars from the central line.
Scars are by far the worst to inject.
That was it for my day. Earlier this morning my plan was to get groceries on the way back to the hotel. I wasn’t sure if I’d handle a trip to the store and the (short) walk back to the hotel, but the taxi came just as I was coming down to the clinic lobby and I asked to be dropped off at the store without even thinking. It was like ripping off the band-aide.
My first solo grocery shopping experience was mostly successful, with the exception that I didn’t know I had to weigh my own veggies and attach a sticker to them. The girl at the till completely understood me when I told her in Swiss German:
“Sorry, I understand a little Swiss-German but not well. Do you understand English?”
She smiled awkwardly, grabbed the veggies and did it for me with a grin. I was able to do a bit of prep for tomorrow while I reheated the left overs from Stephen’s aunt for tonight’s dinner (thank you Cornelia!).
Today started well. I didn’t have to be at the clinic until 10am. My day started with another infusion which is something I do every single day. I had a wicked headache half way through. The headache dulled later on but I found myself exhausted again, I explained this at my doctors appointment and they said they would change my base-mixing-solution for the IVs and it might help.
Following the IV I had the IHHT (alien mask) treatment. It knocked me out hard again. The therapist showed me a graph on the machine depicting my heart rate and its response to the high and low oxygen levels. He said it was good and showed me my first session to compare it, but despite the explanation I didn’t follow due to the language barrier. Next I was fitted for my 24 hour HR monitor which was simple and easy.
Following that I saw both of my doctors together. One doctor is the Assistant Medical Director, and the other is one of the clinic’s physicians. For this appointment I had a few questions. I wanted to know why we hadn’t started a better heavy metal chelation therapy. There are some homeopathic meds in my IVs that are helping with heavy metal detox but not near what is available for treatment. They told me my body is not stable enough to deal with that yet, to start a typical chelation protocol would likely put me in the hospital.
First, we need to work on up building the part of my immune system that is in the gut, which accounts for 60-70% of the immune system, before doing more detox. The genetic tests for detox pathways came back and I function normally in five out of six, which is good (or at least I think it is). Later we will discuss later ways I can work to help my body through its own detox processes–she mentioned continuing the infrared sauna at home and doing regular coffee enemas.
In my last post I mentioned that we found the antibodies against my thyroid are really high. I can work at improving this and therefore my thyroid function with a higher selenium intake (oral plus IV) and by removing the heavy metals. I’ve had neural therapy to my thyroid and I imagine more will follow. Six years ago my family doctor found lumps on my thyroid and I had an ultrasound done, the doctors here have suggested to repeat that when I return home. We also talked about one medication I started over Christmas (the one that costs $500CHF per box). The doctor asked if I felt better since starting it–but I found that hard to answer given all the things they’ve added in the last three weeks. He said to drop from three times to twice per week. If I don’t feel worse then to continue this way until the meds run out and at home I can switch to LDN (which is very affordable) and it can often help in the same way. Some people find one helps more than the other and I have to monitor myself to determine what is best for me.
There are still tests pending, including the pH test. This is done to check if the body is too acidic, which can be typical in a sick person or person who leads an unhealthy life, especially poor dietary choices. My food intolerance test is also still pending.
Last night (Tuesday) I prepped food and washed my hair because Monday was exhausting, and that is never a good start to the week. When I got back to the hotel yesterday after a short day (I only started at 10:30) I was ready to go to sleep. I felt pain in my wrist again and a lump or two working their way out. Waking up today I realized it is one of my regular symptoms popping back up.
My first appointment was with my doctor so I mentioned. She listened and decided while we continue with neural therapy she would inject my wrist as well. I had three injections and the pain was less within an hour but the swelling stayed the same. She also added selenium and other homeopathic meds to act as both antioxidants and to boost lymph movement locally.
After my wrist she injected a main ganglion in the front of my neck. If you’ve ever put pressure on this point you might have found it radiated into your arm or back. As she was doing the injection I felt as though someone was also pushing on a trigger point on my shoulder blade. This is because some nerves from that ganglion in the neck run through the rotator cuff muscles and attach to the shoulder blade.
Next she did a sacral injection located right at the top of my butt crack. Yep!
You read that right.
When she did it I felt a ton of pressure but it will help with the lower abdomen and lower half of the body. She also noticed and injected my scar from the bone marrow biopsy which is only a couple years old but it stung. A lot. Maybe because even though the incision is small it was deep, going down to the bone. Two hours later I had a PAP-IMI treatment and the machine’s action caused that scar to ache like the day I had the bone marrow biopsy. I had to adjust myself so that the scar was out of the direct field of the coil.
The doctor also changed my magnetic field session today to split 50/50 with my head and wrist. After that appointment I cancelled the remaining kinesiology and physiotherapy sessions–I really enjoyed both but after receiving my bill and finding out they are $200 and $260 CHF per session, I decided that money would be better allocated to treatments and the medications I’ll be taking home. I have a mental health therapist at home, and as much as I enjoyed both sessions here at Paracelsus, it just didn’t seem like wise use of our money.
My last therapy of the morning was a colonic. I won’t tell you all too much about it–I don’t imagine it is something anyone wants to read about. I will tell you that I had a lot more cramping with this one (though still overall comfortable) and it surprised me to see how large of diameter the tubing is… it’s about an inch in diameter!
In the afternoon I did another session of Deep Oscillation and Schondorf Therapy and finished with oxy-vein and an infusion. My doctor told me this morning to come back after the infusion if the swelling in my wrist had increased at all… but she actually popped into my infusion at the check my wrist out. It was a nice feeling; with a clinic that runs (mostly) like clockwork sometimes you wonder if you’re just another number walking through the halls but when they pay attention and check on you while your in an appointment it helps to feel safe and like your health is their priority.
During the infusion I also had blood taken–they needed to check on several things; inflammation markers, blood counts, etc to see how I am before the dentist can do any further surgeries that have been scheduled for next week.
This afternoon my infusion had procaine as well – the doctor is hoping it will help with the swelling and pain but if it gets worse I should go see her at the end of the day for more injections. Regarding the neural therapy: despite where some of these needles have gone I feel lucky – I found out they’ve done these injections for some people in the pelvic floor region. Ouch!
I also had the results of my 24 hour heart rate variability test. It was informative but didn’t give us true answers. When I was diagnosed with Lyme, a couple years ago we learnt that the infection had gotten into my brain and my nervous system was effected. The HR variability test helped us to learn a bit about my autonomic nervous system (ANS): the balance between the sympathetic and parasympathetic isn’t the way it should be.
My body is working 90% on the parasympathetic side of things – which means I’m getting a deep sleep at night but not going into REM sleep. The REM cycle is when our body does all of its healing, therefore my body isn’t get the chance to heal at night. This is the ‘rest and digest’ part of the ANS, which helps explain why I’m also always so exhausted, groggy and tired all the time. The other side of the coin is the sympathetic nervous system: it plays the role of “flight or flight”, it gives the boosts of energy when we need them, expends calories and does the ‘work’ during the day.
I also learnt that my sleep is not likely affected by grinding, clenching, snoring or extreme irregularities in my heart rate. This now becomes a question for the doctors and hopefully we’ll find how it can be corrected over time.
I also mentioned that yesterday the doctors discussed changing my ‘mixing’ solution for the IVs to just plain saline (NaCl), today it seemed fine and I didn’t feel absolutely dead to the world after but it was only a procaine infusion – not mixed with the lyme or immune boosting infusion. The exhaustion after the IVs could be because of the effects of the homeopathic meds.