Back in August I posted about my decision to go back to Paracelsus. It was a pretty fast turnaround between deciding to go back and actually being there. We left town in the middle of August and when we landed I had one day to sleep off the jetleg before I went to the Clinic for an “assessment day”. After this I had five days off from the clinic before I started full-time.
Why wait five days?
I did this my first time to Paracelsus too; by going in to start the assessment process we were able to get further ahead. On that first day a lot of blood tests were done – while we took those next five days off the results had time to be processed and find their way back to my doctors. The doctors could then use all of that information to help make plans and decisions about my course of treatment while I was there.
Today I met with the new doctor and the naturopathic doctor who I had in January and who had been following me through phone calls and emails the past 9 months. The new doctor was great, I copied his biography in my last post (you can read it here); he has battled Lyme Disease as well and therefore has a unique perspective. I felt good about this appointment; we went over the history of how I was prior to being bitten and the progression of the symptoms I experienced and treatments I have gone through. Basically, we talked about everything over the last four years and how I’ve been doing since coming to Paracelsus in January.
The new doctor was exceptionally nice and when he would ask about a symptom and I’d try to verbalize how something feels, such as the “Lyme Headache” and the swelling and stiffness in the upper part of my cervical spine and he expressed his sympathy. He knew exactly what something felt like, making it a lot easier to explain–some things are very Lyme-specific and he was very aware of those things. It was great to be understood so well. It reminded me of being at Jemsek Clinic the first time and they knew what I was going through. It never seemed like I was explaining a symptom and hear a voice in the back of my head telling me I sounded ludicrous.
A long, long time ago early in 2016 when we began to think I had Lyme Disease, I found the Horowitz Questionnaire and filled it out. I scored 99.5, which was undoubtedly high. He asked me to fill the form out again, as it helps to paint a clear picture of what my current symptoms are, but it also shows the progress I’ve made in the last 27 months of treatment. Yeah. Twenty-seven months, it’s crazy. My current score is now in the high 60s, we will fill it out again at the end of my time here to see if things worsen, stay the same or improve. I’m surprised I didn’t think of doing the questionnaire again as a measure of progress, but it is a brilliant idea.
The doctor has his own clinic in Berlin and has a 50% (part time) contract at Paracelsus until the fall when he is primarily working at Paracelsus. He is still new enough to the Clinic, so he isn’t familiar with all the IV infusion medications we have access to here, but he knows what he would like to use. He will communicate what he would like to my ND (naturopathic doctor) and they can figure out what is available here and what we can substitute.
We’re not sure yet what the upcoming week will look like, my schedule wasn’t planned yet. There are a couple tests you need to take home to do, such as a stool and saliva test- so I have to do these and mail the samples to the Lab. The only plan we talked about is still vague, but the idea will be to use my time at the Clinic to test my body. We need to find out how I will react to the treatments they are hoping to send me home with. After working with me the last nine months the ND could see how sensitive I was to therapies and treatments last time, so this will be a test run of what my at home protocols might be like.
Monday Day 1
I did well on my days off between the assessment and starting at the clinic today. Truth be told, when I came in Tuesday last week I felt horrid, my doctor commented that I was “moving like an 80-year-old lady”. Travelling this far unquestionably kicks my butt, we have a four hour drive to the airport, a two hour and an eight hour flight and then another hour to drive to my husband’s grandmother’s house.
On my assessment day last week I did an infusion, and within 24 hours I began to feel better. I had a couple good days, but by Sunday “it” was starting all over again. Maybe it isn’t just my body that is at fault though? There has been a full moon – which ordinarily does not bother me, however I’ve noticed the last two years in a row that the September and October moons have kicked my butt hard. I have literally been forced to remain horizontal, unable to lift my legs, my arms and sometimes even my head. Perhaps this moon is getting the best of me too?
It is always nice to find someone, or something else to blame, right?
My symptoms during my days off from the Clinic crept in slowly at least. It took two days and by Friday things hurt again, Saturday another lump grew in my wrist and on Sunday the lump grew a lot. These lumps are almost always disabling, leaving me left without the use of my hand(s) for days. It seems like my lymph nodes are angry–it hurts to touch any areas where bigger clusters of lymph nodes sit: my underarms, upper inner leg…. one cluster has swollen in my groin again. This was something that happened a long time ago and has only flared once in the last two years.
My first appointment today was IHHT. During my 45 minutes I got anxious. This happened in January when I was here too during my first appointment. IHHT therapy alternates high and low levels of oxygen, so part of me wonders if the anxiety spikes during the low levels of oxygen… I can’t help but worry about what therapies are necessary and if there’s something missing that’s more important?
I know that I will see the ND nearly every day this week, and next week I’ll see the other doctor on my last two days.
On Friday I am scheduled for whole body hyperthermia which I am anxious about. When I did it in January, it was horrible (you can read about it here). The last one was awful, but knowing that ahead of time may help to keep me from panicking, or… I’ll just end up psyching myself out and doom myself from the start.
During my apt with the NP I had a bit of good news. In January I had toxic levels of a few mold species, but it has improved a lot. Most are within normal limits now. He also delivered some less than desirable news: my ANTI-TPO went up again from last month (this shows active Hashimoto’s Thyroiditis) and my bartonella titre is high still. These two are ongoing battles, but they told my last time once I can remove heavy metals from my body my thyroid should become a lot happier.
We discussed the doctor’s plans for the week. They feel like the last 8 months I’ve been doing therapies that are stabilizing my body, and now it is a bit more stable we will be moving into a detoxing phase. During my first trip in January when I found out about the heavy metal toxicity I asked if I could do IV chelation. They told me it would be too harmful for me in the state my body was in. This time we will try it. We will see if I can detox without harmful side effects. While I was in my appointment we also did laser light therapy:
Laser Light Therapy
This is done intravenously. They insert a catheter into the vein and then the doctor chooses a color of light to use–each having different applications. Then the doctor determines a strength and the duration. I had saved the information sheet so I could better explain this, but it turns out I’ve lost it or thrown it away, but for the sake of explaining it I’ve googled and picked out info that is as close to the explanation I can find.
The color we used throughout my time at Paracelsus was blue. Blue light is supposed to fight inflammation and help with chronic pain. It may also have anti-bacterial effects on the body. Other colors of laser light have functions like improving energy and circulation, and there are three to four colors in total.
In terms of my symptoms, today my wrist has ballooned out. It is the worst I’ve ever seen it, there is more swelling and redness along a big vein in the other arm. Nothing new… this is common these days. I’ve been getting these lumps once or twice a week–I think I have lumps and bumps in my wrists more than I don’t. Why? I’m not sure. My previous LLMD told me these lumps are related to the Bartonella infection and vasculitis is the most agreed upon reason with most of my doctors.
We talked about the three hour hyperthermia session I’m scheduled for Friday afternoon; this is the same therapy that was hard on me last time. We discussed whether it is a good or bad idea… or if I should do a modified version. The doctor thinks the best plan would be to re-assess daily and decide closer to Friday if we think my body can handle it. I genuinely feel so much better (mentally) here this time; my doctors actually listen and are in tune with the issues we’re facing.
One improvement I’ve noticed over the last 8 months is my energy level. I’m not exhausted 24/7. Since returning in February from the Clinic I’ve continued with weekly procaine injections on my adrenal glands…which I am sure are making a big difference for me. He also said it as a sign my body is improving its ability to produce mitochondria (the “power house” in each of the body’s cell)–this is great news. While I was on antibiotics, I was on some that cause massive mitochondrial damage. It is a great indication that I am slowly making progress.
There is one thing that absolutely has not improved: extreme muscle fatigue and weakness. He said it tells us that there are problems within other aspects of my body’s cellular biology. These two things should heal on their own over time and with a little help from the protocols I’m following from my doctors. Other things, such as the joint pain, inflammation and these lumps are secondary to the bacterial infection which still is not controlled.
Tuesday – Day 2
Today I had a live blood analysis done again. It showed that my blood is too acidic (it should be alkaline) so he’s prescribed something for me to take for 10 days, two times per year. There is a Catch 22 with this though: I have the opposite problem in my gut because it is too alkaline (and should be acidic) so it’s important that we don’t overdo it when trying to bring up the pH of my blood. The doctor saw a lot of cells “sticking” together in clumps he referred to as “islands”–this could mean one of two things: excess protein or inflammation. We know without a doubt that in my case the problem is inflammation, which is supported by a high ESR and CRP level.
He saw some Candida, small amounts, but it’s there. It also looked like there might be arsenic toxicity present and this was confirmed in the previous heavy metal tests. There was a lot of evidence of low metabolism in my liver, so he’s prescribed something for that. There were “symplasts” present, these can cause hardening of the blood vessels and slows down the blood flow. They vary in color and size and are densely packed with toxins and microorganisms.
From what he saw during the blood analysis he said it is very clear that the infections are a big problem still. It is going to be a balancing act of killing those bugs and building my body back up. He prescribed a couple penicillin-like meds for me – these are not antibiotics though… they work like an antibiotic, without gut damage and the rest of the havoc that come with antibiotics.
So, like I said before- they planned to assess and change things daily for me which they’re doing today. Given the lumps I have in my wrists (there are now four in total) plus the evidence of a lot of inflammation he changed my plan for today. We won’t be trying to detox yet, he wants to get the inflammation down so I’ll do a procaine infusion, which should also help with pain. Something I didn’t realize, or I had forgotten from last time is that procaine will also help make my blood less acidic.
We will continue to play everything day by day; he said he needs to see some improvement before he’ll let me do the hyperthermia session. We will use the upcoming days to prepare for it and maybe do it Thursday instead of Friday. They’d rather try Thursday then have me at the Clinic all day Friday rather than doing it Friday and let me suffer at “home” all weekend. If I don’t improve in the next couple days, they’ll move it to Monday.
During our chat we talked about the overall therapies they’ve found helpful in Lyme Disease and discussed things that might be highly beneficial for me. He mentioned that soon they will get newer technology for hyperthermia and that it could be something I’d benefit a lot from if I came back. It’s a much more serious therapy, so much so that “therapy” doesn’t seem like the right word. During the procedure the patient’s body temperature goes beyond 41C and you are under sedation as you would be in surgery.
Wednesday – Day 3
The ND consulted with the new “lead” doctor at the Clinic about me, wanting to get more opinions about my situation and the upcoming hyperthermia session on Friday. The other doctor pulled me aside in between appointments and I felt so safe and reassured by him. I wish my first experience had been like this one. He even brought me to tears… that’s not something that happens easily. We talked about if hyperthermia is a good idea, he said he will not take a chance on anything that could make me worse. He said being put through therapies and getting worse should never happen, saying
“that would be non-sense, and I don’t accept any non-sense,”
I’ll do Hyperthermia on Tuesday only if I turn a huge corner over the weekend, so they’ll be doing IVs to help prep me until then.
He has studied Lyme Disease for over 20 years; and aims to understand why some people end up having a systemic infection. In his clinic in Germany they used to treat mostly cancer patients, but now it’s split between Lyme and cancer patients. He discussed the cystic forms of the bacteria and their life cycle, and how to best treat the infection, the treatment should be cyclic, pulsing the treatment, just like my last LLMD did with antibiotics. His opinion is that once you can get rid of the Lyme bacteria, then the co-infections can be dealt with much more easily. With my last LLMD they had the opposite theory, treating co-infections first, then you can target Lyme–but I also think there is a number of successful routes of treatment, and what works for one person, may not work for the other. I feel confident though, these doctors at least know what we’re dealing with and how difficult the infection(s) can be.
At his other Clinic in Germany, he has used extreme hyperthermia treatment for years on cancer patients. The reason it is extreme is that it heats the body to 41.6C… I have questions about how this is achieved safely and complications of such a high fever are avoided, but that is something to discuss a little down the road. They’ve been using this treatment for Lyme patients for a while now. Following our conversation was a bit difficult, English isn’t his first language, but man–does he ever talk fast! I talk quick myself, often losing people who’re not used to talking with me… so for me to have a hard time keeping up with him, that has to tell you something!
If I understood him correctly, he said they find an 80% reduction of bacteria after one hyperthermia treatment – further treatments can bring it down to a 98% reduction, and then by this point the body should handle the last 2% of the infection, and the co-infections can be dealt with.
After seeing me for the last nine months and the progress I have (and haven’t) made, they’re putting together more pieces of the puzzle of my health. The doctors said the infection is rooted, and is stronger than they originally thought. It doesn’t mean that the work I’ve done between my first visit and this one was fruitless, all the infusions I’ve done helped, but they aren’t enough that my body can take over. I appreciate the honesty and transparency when they tell me it will probably take up to 5 years before my body recovers to its fullest. Do we know what that will look like? No. My recovery and someone else’s could look very different.
The new lead doctor told me again that there will be “no non-sense” and if there’s even a small feeling the regular whole body hyperthermia will aggregate me and kick up the infection, they will not do it.
I told him I wished he was here in January and he casually relayed that times had been very bad before (not a surprise given I had quite a bad experience in January) but he said he will run this clinic so it becomes “the best in the world”. I felt a lot more confident again – I have three great doctors this time.
Otherwise things today aren’t great, but I can’t complain too much. We are continuing to have a harder time finding and accessing veins. I’ve also had a wicked “Lyme headache” for a few days so they did a couple procaine injections in my neck. It’s relieved a bit of the pressure. The lumps in my hands and forearm haven’t improved though. On the bright side: the shoulder pain is gone and I’ve been able to comfortably dress and undress myself without help, but I’m still walking like an 80-year-old lady.