As promised, here is part two of my second visit to Paracelsus. If you didn’t get a chance to read the first part you can click here.
Thursday Day 4
I’m happy to say I am doing a bit better, my neck isn’t as stiff and the pain and swelling are improving. Good things are sometimes short lived though–especially in the Lyme Life, as the day progressed, my right wrist grew a lump, and my left knee and ankle started to hurt a lot. The relief from yesterday had been short lived.
Today I had my first ever intravenous DMPS (heavy metal chelation) infusion. It didn’t go too bad; halfway through I became nauseated, but it passed. The one side effect that seemed to get me the worst during the infusion was that my vision clouded over and topping that off I became exceedingly groggy. I can’t tell you how nice it was to have my husband there this time. Midway through the infusion Stephen popped in to sit with me, and he could see the change in me, asking “what is wrong with you?” because the haze was noticeably thick.
They followed the DMPS with a less intense detox to help get rid of any heavy metals that might be still floating around. My doctor told me to come home and take more selenium and chlorella too.
During my appointment with the ND I had last light therapy again. He is a smart guy, you can always see the gears are always turning–he had been thinking about my January visit and asked how I tolerated the live cell extracts. But here is the thing: he didn’t know I didn’t receive them in January. The doctor was shocked and asked why. Dr. Rau had suggested the cell extracts in January, but my two other main doctors disagreed, saying it would be a waste of money. I’m quite sure his jaw the floor.
He was mildly horrified and baffled, rendered a speechless for a moment. He then said he now understood even more of the bigger picture with me, having thought they did the cell extracts in January it surprised him that I didn’t improve much and why my progression has been so slow.
Subscribe To My Newsletter for Lyme Disease Updates
Success! If you don't hear from me right away be sure to check your junk mail!
I wrote about this cell extracts in my daily diaries from January (you can read it here), these are the injections that cost approximately $400 CHF or so per injection. Well, today I got one. I choked at the thought of having these daily for the last 4 days at the clinic – but I trust him and if it seems important to him I will take the chance and invest in it. Also: when we paid my bill, I found out these injections are not as expensive as the doctors told me in January. They are about half that price which is a lot easier to handle.
They use extracts from different types cells. Today they gave me placenta cell extracts, which are used in endocrine disorders (if you remember a few months back we found out I’ve been in an “endocrine crisis”, you can read about it here). My test results aren’t back to see if there is an improvement in my neuroendocrine panel … but these cell extracts are like stem cells and can be effective in treating endocrine weakness, and in treatment following severe illness, according to the information sheets.
He also mentioned doing adrenal and liver cell extracts sometime over the next four days. They use adrenal cell extracts in combination with liver cells for treating allergies (thankfully, this is one struggle I don’t have), chronic rheumatic conditions, fatigue and “burnout”.
There are no further test results back yet, so I can’t say how other things have progressed compared to January, at least not objectively. The only other results are from an amino acid profile – which they didn’t do in January. Some levels came back low, so he said they may do an infusion to bump them back up.
As for the lovely possibility of a hyperthermia session, they said if we can move other therapies around in other’s schedules, not just my own – they’ll try to do hyperthermia Tuesday morning (only if it seems like a safe idea) and then I’ll be able to come to the Clinic Wednesday for monitoring before we fly home Thursday.
Friday Day 5
Today was a quiet and easy day. My therapies were laid back, and I finished early. I had oxyvein and a build up infusion this morning, then had an appointment with the doctor. The doctor did two more live cell extract injections, one placenta and the other adrenal.
Last night was hard for me and I can only assume it had been caused by the DMPS. I had flu-like aches with a sudden flare up of more joint pain. My eyes were still clouded over. During my appointment with the doctor I asked about IVIg. This is something many people with Lyme opt to do, I can’t explain our conversation because it jumped around, but right now he didn’t think it is something to pursue.
Saturday and Sunday
After the clinic on Friday we took off to a beautiful town called Grindelwald. We planned this weekend away a few months before our trip to Switzerland with some of Stephen’s family. It was about a five hour drive from the clinic and we met up with Stephen’s two cousins, and his cousin’s husband and their baby.
It was late when we all got in on Friday, by the time we checked into the hotel it was around 10pm so our first visit didn’t take long, we stayed up chatting until about 11:30 then all crashed into our beds.
Grindelwald is a town to visit when it is a clear sunny day, so if you’re reading this and thinking of going I would suggest planning around the weather if you can. We made the best of our rainy, dull day though. The poor weather played out in my favour; when I woke up and found out I couldn’t lift my legs or arms. Stephen had to take my PJs off for me and lift each leg into the shower for me, then help me out, dry me off and get me into my clothes for the day.
Was I frustrated?
Yes, you have no idea.
I hoped to do a lot of exploring in this beautiful little town, and I knew I would miss the opportunity. Even so, I know I am lucky to have someone who would do all of this for me, including bringing me accross the ocean to go to the Clinic.
After sleeping in we bundled up and started out for lunch. We walked to a restaurant near one of the gorges. Luckily for me there was a very gradual downhill slope to get there, so with Stephen as my balancing pole I shuffled to the restaurant. I walked painfully slow, but no one seemed to mind.
We had lunch, then instead of going on a walking path along the side of the gorge I had to go back to the hotel. I pushed to my limit and couldn’t do anymore. Stephen and I took a bus back, and I was as rigid as you can imagine. Apparenty, my body tricked itself into rigor mortis. Stephen drew a bath and got me into the tub to soak, which usually helps a little. After that I laid down, and we both ended up falling asleep. The week of therapies at the clinic got the best of me; I must’ve fallen asleep the second my head hit the pillow. I remember waking a couple of times later in the afternoon, around 3pm and saying to Stephen “we’re the worst company to go on a trip with!” but we were both so groggy that we fell back asleep. Finally around 5pm we met back up with Stephen’s family.
We got ready and drug ourselves out to dinner, at a place called C&M which had been excellent. Everyone was happy with their meal, so if you’re heading to Grindelwald keep this place in mind.
Finally Sunday I woke up and could move better on my own. The weather cleared up a bit and when there were breaks in the clouds we got to experience what an amazing view the hotel had. We took a train up into the mountains and had lunch there. The clouds became a lot more dense at that elevation, so there wasn’t a view… but it is neat to have the sensation like you’re on a small plot of land floating in the clouds. From there you can take another train to go to “the top of Europe” which is the highest point you can reach by train or cable car, but we decided against it knowing the view would be obstructed by the clouds. Once we got back down to Grindelwald, we said our goodbyes and all made our way home.
Monday Day 6
I had an appointment with the doctor this morning, this time the one who had Lyme himself. The original plan had been to go over my home supply for medications, but he wanted time to review everything from my week prior and so we only touched on a few things that we will cover in tomorrow’s home supply.
My amino acid profile had been mentioned again, he wants to prescribe some for me to take at home. His biggest hope for me is to continue detox and do more of it–especially working on removing the heavy metals. He will prescribe DMPS for my home infusions.
The results from my stool test came back. There are some positive changes! The pH of my gut is still too alkaline, but it improved from January. Another great change is the immune system cells in the gut were present enough to be measured! This made me so happy, you can’t imagine. In January it was too low to even measure and this time the value was still far too low–but at least it registered.
The results from the saliva test (the neuroendocrine profile) are not back yet, and I won’t have them before I leave to go home. Another topic we discussed is my body’s iron stores, and its inability to build them, and whether my body can out compete the bacteria for iron utilization. Given my iron stores are as low as they are at the moment, they’ve arranged to do a large dose of IV iron during today’s infusion.
As we already knew, my inflammation markers are still high (CRP and ESR) and the next time I am here he would like to investigate this more in depth. His goal is to understand where the bacteria is hiding in a large quantity and keeps coming out from–he said it could be a few things, perhaps from my brain or gut, or somewhere else, but he would like to try to find the primary source.
For my home supply I will do three infusions per week, a detox IV with DMPS, an up-building infusion and a procaine infusion. Another thing he wants to consider is how I will tolerate doing the extreme hyperthermia treatment in the future. He would like to come up with a plan ahead of time as he thinks that it might cause a Bartonella flare. This makes a lot of sense considering when I did the regular hyperthermia session back in January I had a wicked time afterwards.
As for hyperthermia during this visit? It isn’t going to happen. I’m just not stable enough to try it and then travel two days later… and I can’t say I’m disappointed to skip it.