Thanks for tuning back into my story. I know my lack of regular posting makes it hard to follow along and remember what happened last… but I truly appreciate you coming along for the ride. And if you’re just tuning in? Thanks for being here! Perhaps you found my site in search of answers during your own, or loved one’s Lyme Disease journey? I genuinely hope you find this blog helpful.
To recap:
It took two years after the bite to be diagnosed; you can click here to read that blog. Next, I spent roughly a year and a half with an Infectious Disease Specialist in Washington, DC – there are several blogs about my time at his Clinic; you can read the first one here. Following the antibiotics I switched modalities and went to Paracelsus in Switzerland. You can read about my decision to go to Paracelsus here, and in the blogs that follow I posted my daily journals – all having so many details I’ve had to break each visit (I’ve done three now) into multiple blog posts. There is a lot of information to digest.
My last post was about the beginning of my third trip back to Paracelsus for Lyme treatment. If you want to catch up, click here to read it… or you can continue where we left off…
The Weekend!
We got home from the clinic around 5pm and decided instead of making dinner we would go into St. Gallen and treat ourselves. We caught the train into the City then found a pizza place that offered gluten free crust. Stephen was in the mood for pizza and I didn’t particularly care what we ate, as long as I could find healthy and Lyme-friendly options. My pizza wasn’t only gluten-free, it was vegan–the “cheese” was a house-made cashew-cheese mixed with a beet puree. It was without question and beyond a doubt the strangest-looking rainbow of a pizza I’ve ever had.
After dinner we walked took the train home. The walking and all the stairs I’ve forced myself to climb this week have taken a toll. My legs were sore by Friday afternoon, then by Saturday morning I was taking the steps one at a time again. I have a strong “if you don’t use it, you lose it” policy with my body and muscles–no matter how difficult it is, I will force myself to do it.
On Saturday we slept in and had dinner at Stephen’s cousin’s and came back home around 8:30. I having a hard time moving, my knees hurt a lot, and I was beyond cold, so I wanted to stay up for a while and drink some tea and we ended up playing Skip-Bo until 10:30 with his grandma, which was much past both her and my bedtime. I was looking forward to a long night sleep more than you could imagine.
Meersburg, Germany
The next day after sleeping in longer than we expected, we had a coffee then went to Stephen’s uncle’s visiting for the day. We initially planned a museum visit, it seems to be raining each day we’re here–but the weather took a turn for the better and we went to Konstance, Germany. I was glad; I felt that walking in a museum would have been hard, so a scenic drive seemed like a good plan. Once we got there, we spontaneously took a ferry to Meersburg which was a fairytale-esque town and a great way to spend a couple of hours. The downside was that by the end of the day I couldn’t lift my leg enough to get my foot into the shower; it was too much for me especially when I started out in poor shape.
Monday April 29th—Day Four
My day started with an appointment with my doctor. I asked to cancel the additional swinging cushion sessions; despite feeling great for the first 12 hours after having it on Friday, soon enough it felt like an elephant walked over my back and neck. When I explained this to her, she was surprised, but then said,
“when the muscles are not clean, then the massage can cause toxins to release,”
Remember, while reading this you’re probably wondering why she would word it as “not clean” but she is German, so translation will never be perfect, but we all got the point.
The results from my lab work should have been in by now, but it wasn’t uploaded into the computer yet, so she would make some phone calls and get them. When I see her Wednesday I’ll know more.
She asked about the usual, including bowel movements–which haven’t been as regular since we travelled here. This is fairly normal for most people with travelling, we had a funny moment when she said, “in Germany we have a saying for this, but I do not think it translates very well,”
After a bit of hesitation she said,
“it is a bit like ‘house-shitter’?”
Yes, point taken.
She decided based on this she wanted to do more neural therapy. There are a lot of nerve endings in the solar plexus that attach to the bowel, pelvis and head so it would be a good spot to do it. She also wanted to do another point related to the large intestine. The doctor warned me it would hurt, but she would apply local aesthesia first. My first thought was that if it does hurt and my eyes water that I wouldn’t let myself bawl my eyes out this time.
I expected the needles to be on my stomach, especially when she said “solar plexus” it seemed more likely to me it would be somewhere around the belly button–but I was wrong. She gave both needles on my back, the first was mid-back, where the lumbar meets the thoracic spine. The second was near my iliac crest, similar (from what it felt like) to where my bone marrow biopsy took place.
When you get neural therapy, the sensation that comes with it can be unpredictable and different for each person–and it can sometimes travel, so you’ll feel it in an area nowhere near the needle’s entry point. That was the case this time.
It took a long time to empty the syringe, and I started to feel a pinch over my hipbone, then it reminded me of the bone marrow aspiration. Except instead of feeling marrow being sucked out of the bone, it felt like something going in all the way into the part of my pelvis where my hip bone sticks out.
To her credit, as much as she warned that it might hurt–it wasn’t so bad. And she didn’t show me the needle which was also smart; Stephen said it was about three inches long, but I don’t know how far she stuck it in. After she was done I had to lie on my stomach for about ten minutes, she checked my heart rate for the first few–it is normal for it to cause an increased or irregular heartbeat. After a while the left side of my low back felt warm and tingly. When it was time to get up, I put my shoes on and swayed heavily to the left, catching myself on Stephen. She asked me to “please take the elevator” on the way down.
I already planned on it.
My next appointment was an artemisinin infusion. We accessed my port on the first try this time and it didn’t act up at all. I could move around and it continued to drip–I have no idea why it was being so temperamental last week, but *knock on wood* it seems okay now.
Once the IV finished, I went to my last appointment (I had a beautifully short day) which was IHHT. The therapist told me two things when I got into the room, the first was that my doctor told him to do myofascial release tomorrow to help with the soreness of the swinging cushion massage. At first I was agreeable, but then 20 minutes later I thought about my port and that it is still accessed and I would rather not take the needle out for a massage of any kind. And I sure as heck am not laying on my chest for a massage while there is a big a$s needle sticking out of it. Thanks, but no thanks. I’ll be cancelling it tomorrow.
The second thing he told me was that the doctor requested a change in the IHHT program. I was surprised; I didn’t realize there were different programs for the machine. No one has really explained much about it to me over my three visits other than it is “oxygen training”. For this session I did four minutes of low oxygen alternated with five minutes of high oxygen; this is a detox program. Eventually the goal is nine minutes of high oxygen. I think?
Sometimes the accents are so strong I get lost in the conversation and just resort to smiling and nodding.
It is important to stay awake and take deep breaths through your nose for this therapy, so I try to read so I keep awake. It is easy to want to sleep during this one in particular. After 10-15 minutes on the machine he asked me to put my book down and concentrate on breathing, four seconds in, five seconds out. I want to make the most of the session and get the maximum benefits–but I’m in the middle of my book and not just any random character, but the Crown Prince just got shot in the chest. And you want me to put my book down now? Fine. For now.
Breathing like this is normal for me, I often do these counted breaths before bed so it was fine. But after another 10-15 minutes (it is a 55 minute program) the effects of oxygen deprivation kicked in and I was dozing off. At that point I thought I might be better to read again, but I tried to stay awake with little success.
At the end as we were leaving the building I realized my ozone session that was scheduled to happen with the infusion had been missed. We went back to the front desk and Stephen asked the nurse about it; she said they canceled the ozone sessions for the rest of the week. It confused us. On my first day during the doctor’s appointment, my “favourite doctor” told me it was important to get the most out of “critter extermination” by the use of ozone daily while I was here. And someone cancelled it?
This is something that I find frustrating at the Clinic. There are a lot of doctors, and (naturally) they have different opinions. One says “you should take this, it is so important” and the next says the complete opposite. Who do you listen to? Tomorrow we will ask the front desk to call or message the doctor to find out why she removed it and try to politely (yet firmly) request that it be put back into my schedule.
Tomorrow is another short day, and a chance to sleep in a little. I’m most definitely run down, despite everything and the fact my schedule is much less congested this visit–it is still a lot. I napped when we came home today, tomorrow I don’t have to be at the Clinic until 10am and I’ll be finished by 2pm.
Tiggy – the resident cat. I’ve never been extremely comfortable around cats and he always finds me, walks over me and lays nearby
Tuesday April 30th – Day Five
Not exactly the greatest day today, and I’m sure the gloomy, damp weather doesn’t help.
We got to the clinic and went to the accounting office first. I didn’t expect that I’d have used up the deposit already ($10,000 CHF, roughly $14K CDN) but they requested a deposit of another $8000 CHF.
My bill is correct so far, mistakes have occurred, but it looks legit so far. They charge $4000 for “various lab tests” and say that sometimes people get a credit because they don’t use as much as that. I didn’t have as much done in terms of blood tests this time, and no saliva test either. I’m hoping for a credit.
I went to my first appointment, IHHT and decided I would try to read while I focused on breathing, otherwise I’d just fall asleep which is likely the worse of the two. During the appointment Stephen went to the front desk to ask about the ozone therapy being removed, and I still wanted to cancel the swinging cushion. I told the doctor that yesterday, but her and a therapist spoke and decided to do a myofascial release massage instead. I still didn’t want to do it today. I have bruises from Friday and poking around more isn’t on my list of things that will make me feel better. I also asked to cancel the nose therapy session once I saw the bill. It was about $120 CHF and that was enough that I figured I could manage fine without it.
When I finished the IHHT appointment Stephen told me they cancelled the nose therapy, but it was too late to cancel the myofascial release, that they would charge me for it.
Well, I was more than ticked off.
My temper flared at the idea they would suggest it was too late to cancel it – especially when I asked 24 hours earlier. And they had no issue cancelling the nose therapy 6 hours before it was scheduled? I wasn’t okay with this. In the meantime they added an ozone therapy for today, it would happen right after IHHT, then the infusion was bumped to 4pm, which left me with a five-hour window of no therapies.
To deal with the myofascial relsease appointmenet I went back down to the front desk and explained I would not do it, that I’m still too sore from my appointment on Friday and I still have bruises. They suggested a lymph drainage massage instead, but I just politely declined. I’ve never found them helpful, here or at home – so I didn’t see the sense in doing one.
I felt better after they allowed me to cancel it. She mentioned nothing about charging for it either at this point. Which really… isn’t fair when I tried to cancel it yesterday because I have bruising from the first time. By all rights I just don’t feel the need to get poked and prodded at right now.
We went to my next appointment for ozone, and at the time Stephen talked to the nurse to see if it would be possible to do my infusion sooner. She said it would be fine, to sit in the waiting around around 1:30pm and that she’d fit me in. I started even earlier, around 1:15pm and finished by two.
My schedule said today was a tumeric infusion, but it ended up being phosphatidylcholine again. I was confused by it, and the nurse said that they changed my schedule for the week, like how the ozone was removed, the infusions changed too.
This was news to me. They printed my schedule this morning and still said curcuma (tumeric). I’m sure the change in type of infusion is appropriate, but it would have been nice for whoever made the changes to tell me and explain why.
That was all for today, no doctor appointments. Tomorrow I have my medication order appointment with my main doctor.
my port is accessed and yet there is still a catheter in my arm too
Wednesday May 1st – Day Six
Today started with colonic. At the end they insert a catheter and add probiotics, when I asked specifically what it was – the answer was confusing. Part of the answer included “stones” – I thought it was a bad translation, and she meant bentonite clay, it seemed somewhat logical – although not logical enough that they’d mix it with a probiotic? In the end I’m not entirely sure what they mixed with the probiotic, other than it was 20mL of solution injected about 18 inches into the large intestine.
After that I had an up-building infusion. Nothing fancy or otherwise worth mentioning. Following the infusion I had my medication order appointment with my doctor.
Though I like her, I couldn’t help wish that my favourite doctor was at the Clinic this week as I felt like she didn’t understand how horribly sick I’ve been the last couple years, and how I slipped severely downhill once I ran out of infusion sets.
I like her plan, but I just don’t think it’s long enough or will meet my body’s needs as much as she thinks it will. There is a battle in my head about things that have been said over the past week at the Clinic, and tomorrow I need to point them out. Ultimately, I think the doctor and I are both correct; but my head is taking into accounts ALL parts of my health, where she’s only just met me and doesn’t seem to grasp the complexity of what all has occurred and how horrible its been.
One of my infusions, Artemisinin, as I mentioned is something that I took at the suggestion of my previous LLMD- except it was oral not intravenous. She asked if I could access this at home (which I can if I travel for an eight hour round trip to the City to a Naturopath) but it isn’t realistic to rely on this. I still don’t drive on the highway and I can’t expect a chauffeur into the city all the time. With all that said, I mentioned I took it orally before and without IV artemisinin as an option, should I continue to take it again?
Her answer was no, because they feel it doesn’t absorb well.
And here is my argument:
With the never ending, always fluctuating high levels of inflammation in my body over the last 4-5 years, plus the damage in my gut, and the ruins it was in from long-term antibiotic use, the lining isn’t healthy–I’ve talked about this a lot in earlier posts. Bottom line: my gut’s ability to absorb oral medications isn’t great.
So why rely on all the medication in the at-home protocol to be oral when I have a port? But suggest Artemisinin is only valuable if it’s taken intravenously?
As you read on, you’ll see that the doctor wasn’t originally going to add home infusions to my protocol and wanted to rely on oral medications instead (and only one round of them). I think this falls short of what I need, and I also think if it’s available IV then it will be easier to absorb.
Backing up a little though, the first thing we reviewed what was my labs. There weren’t a lot of changes but I no longer have any deficiencies of vitamins or minerals. At one point my body was competing against the infections for certain things like magnesium and iron. I’ll continue to take certain supplements (such as zinc and vitamin D) because of their role in cellular metabolism, but not because I’m deficient. My body is still attacking my thyroid, and until we remove a lot of the inflammation and I remove heavy metals, then it will continue to do so and I’ll be taking selenium. She also pointed out that I have an irregular pulse and wants me to take magnesium and potassium daily. So, there are still a handful of supplements I’ll be taking after all.
My ferritin level is normal, so I don’t have an iron deficiency although my iron level is low. She said this is normal with systemic inflammation and not a deficiency. This is also nothing new for me. It has been like this since I became really sick.
She pointed out my hormone panel, which on paper shows that everything is within the normal range. However–we’re coming back to xenoestrogens again.
Xenoestrogens are chemicals that mimic some parts of our own estrogen compounds, therefore may act as estrogens or could interfere with the actions of natural estrogens in the body.
I believe I already mentioned this, but during my very first visit they tested for these and my results were good, I was relieved that something that wasn’t wrong with me for once. Based on these results, I assumed she was misinterpreting things when she “read” my face, eyes and nails and said there were signs of xenoestrogens.
But, things can change. And at Paracelsus things seem to change often; though I suppose anywhere that you practice anything science based (as medicine is) things change with research and time. They no longer perform that test they did in January 2018 because they feel it isn’t accurate. They rely on your face, nails and the hormone levels measured in your blood.
Specifically, they’re looking at the ratio of estrogen to progesterone. It should be 1:1 or at the most, 1:10 and mine is about 1:1000. I went back to check the results from January 2018 to see if there was a difference from back then and sadly, there isn’t. But I suppose its good that it hasn’t become worse.
This is something that I will have to work at removing from my body, and it turns out zeolite works for xenoestrogens, so I’ll be continuing to take it.
As always, the Bartonella infection is still a battle, which concerns them more than Lyme Borreliosis and the Epstein Bar virus. She added a Lyme protocol and a viral protocol for me to do at home (a program of oral meds). With that said, I still hope to talk to someone about adding the Lyme Infusion sets back into my plan for home. These seemed to make a big difference in 2018 when I took them.
The plan she wrote for oral medication doesn’t involve taking everything at once, which is a good thing – I was honest with her at the beginning and said I haven’t done well with oral medications the past few months, 50+ pills a day, plus liquids and powders is overwhelming.
I’ve turned into the cringe-worthy, non-compliant patient.
Our focus will be in a certain order,
1) gut repair
2) Lyme protocol
3) liver support and xenoestrogen removal
4) virus protocol
* note that as I edit and work on posting this at the end of September 2019 (about five months after my visit) I am on step three. This isn’t a fast process.
Ultimately, she wasn’t leaning towards infusions, when we asked about them she said one or two up-building infusions a year is good enough. This is opposite to how things have been for me the last two visits; I was doing infusions weekly, up to three times per week. And we saw the benefit when I was taking them vs. when I ran out.
After my second visit to the Clinic they said to expect infusions for another couple of years and so for that reason I had my chest sliced open (twice) and had a large plastic device placed inside of me (I’m referring to my port-a-cath and the two surgeries it required – you can read about it here). I would like to use it after going to all the trouble of getting it.
I question some things still and some of the other doctors here have agreed with this:
Here is what makes little sense: my test results show that within my gut, my immune system is poor, I have less ability to fight infection. There is still damage to my gut, which includes inflammation. Taking meds orally with an inflamed gut will mean it won’t absorb as well as a healthy gut would. Bypassing the gut with IV medication seems more logical.
alpha 1-antitrypson is the level of inflammation in the gut; and secretory IgA shows the health of the immune system in the gut. The IgA result confused me at first, in the past I barely registered on the graph and this time I’m way over the end. It turns out that high levels of inflammation will produce a result like this.
She’s added the Lyme protocol and viral protocol, but it’s only a one-time shot. Like a round of antibiotics…. but again, I do not see how if I don’t have a well functioning immune system yet, how one round of these protocols will keep the infection down long-term while my gut heals and then my immune system starts to fight back.
In the end, we expressed our preference and reasoning again to have infusions with the oral meds, and that we’d like to take enough home for 6 months because mailing them is not an option anymore. Running out like we did last time is something we want to avoid entirely; I deteriorated quickly and significantly without them (you can read more about that here).
She wrote a prescription for four different infusions, with five of each- 20 altogether. As I write this, I’m not entirely such which ones she wrote. Tomorrow when we go to the pharmacy to order them we will try to have more than five each filled to take home. If that doesn’t work, on Friday we have an appointment with a different doctor, he was new to me this visit but I really liked him and I think he will understand where we’re coming from better. During my entire visit I’ve felt like her and I haven’t been reaching a common understanding. Is it just a language barrier? I don’t know.
With having more than one doctor under their roof, orders for medications and overall opinions don’t always align. It is confusing for the patient.
But I know one thing for certain:
I know my body and what has worked, what hasn’t and what my gut is telling me to do. And with the approximate 1.2kg of nerves in my gut… as much as are in my brain? I think there is total merit in listening to your gut feeling.
The impression I got overall from today’s doctor is that once I do one round of these medications, she’s suggested that I should do well enough to not need them. This is why I wish my favorite doctor was here; he’s seen what the last year and a half have been like and knows my history a lot better and (I think) takes it a lot more seriously.
I’m bummed, but I think by the end of the week we will sort it out. Tonight I am emailing the doctor with a list of questions for tomorrow to make the best use of our time (we ran out today) and to ensure I make myself as clear as possible. With whatever is left over and what I don’t feel like she is taking into account, or seriously, I will talk with the different doctor about on Friday.
Thanks for sticking with me,
My third visit has been broken into three parts, so just one more left to post and then I’ll be writing more about recent events… including a more-local (Canadian) clinic that I’ve been to and what has been working. Plus, what hasn’t – to which I refer to is my port-a-cath… culminating in an air-ambulance trip to the City and an upcoming surgery. For more on that check out my Instagram page, which you can find on your desktop by going to the top of the page and to the right hand side under the heading “Follow Me” and choose the blue rectangle that is third from the left. On your mobile keep scrolling down the page until you see the heading “Follow Me” and it is the third box from the top.
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