In the world of Lyme Disease patients often joke about “Lyme brain”. What is it? Well, picture your brain as a filing cabinet with different drawers arranged by date and that are color coded. The drawers include things like memories, language, critical thinking skills – the whole nine yards. When someone is experiencing “Lyme brain” it means we’ve temporarily lost the key to one or more of those drawers – or maybe the dates are mixed up and the color coding is as random as a packet of skittles. It disorganizes our thoughts, and it’s easy to forget things.
My blog seems to be experiencing an episode of Lyme brain; it is out of order and driving me nuts. I can image if your reading these it may also be frustrating because it is jumping around. I intended to get all of my posts with my daily journals from Paracelsus up within the first couple months I got home, but I’ve had a rough year so far. My symptoms continue to be up and down, my energy is lower than it was – the short story is that I just can’t make the time I need to get posts out as soon as I’d like.
If you’re just tuning in now and want to follow the Paracelsus journals in order, you can use these links:
My Assessment at Paracelsus
Week One of Therapies
Week Two of Therapies, Part One
Week Two of Therapies, Part Two + Whole Body Hyperthermia
Week Three, Part One
(and this current post, which is Week Three Part Two)
If you want to read about how I’ve been doing since getting home, I’ve also uploaded this more recent post about how I’m managing now, four months since being at Paracelsus Clinic.
In my last blog post I ended with the results from my gut microbiome. There was so much information in that post I had to keep it from becoming too long. The rest of my third week at Paracelsus for Lyme treatment still was not getting easier.
The best way to put it: things were going downhill for me.
Day 11 (continued)
After getting my results about my gut health and microbiome I went into IHHT and tried as much as I could not to fall asleep; from what someone has told me you get more benefit out of the session if you stay awake and take deep breaths throughout it. Believe me when I tell you it isn’t hard to fall asleep when you’re breathing in only a limited amount of oxygen.
My next appointment was with both of my doctors, plus a third doctor shadowing as a new doctor to the clinic. It was the worst appointment I had while I was there.
The first order of business during our appointment was to review my recent lab work. My WBC levels are up now and my CRP (a measure of inflammation) has shot up. Starting in January it was at 7, which for me is great, still slightly high but when I was at the high of this illness in 2016 my CRP was in the 70’s and 80’s. Yesterday my CRP measured at 45.
I can’t be too sure.
First: Lyme symptoms and flares are cyclic. Perhaps I am in a phase right now where the inflammation has kicked up, and it’s “natural” as part of the course with Lyme Disease.
Second: I’ve had two weeks of therapies now, including the oxyvein, ozone, hyperthermia treatments and lyme infusions. We’ve been putting a lot of pressure on my body, plus killing the bacteria and that produces endotoxins. Those toxins take a lot for my body to clean up and recover from.
Both could contribute to the high CRP.
Today I had my detox infusion, so that might help a bit to get rid of some inflammation, and the doctor ordered a lot more vitamin C to be added to it because I still can’t shake off the fevers, and paired with the elevated WBCs and CRP they thought super high doses of Vitamin C would help.
Because I am increasingly exhausted, I asked if we could reduce the number of therapies, which was no problems and we cut back on a few. The downside of getting worse while I’ve been here is that they now decided I am not stable enough to do the second half of my dental surgery or the liver detox: the 5th and final day of the detox was supposed to be tomorrow. Next week they will re-evaluate if I can safely be rescheduled for the detox or surgery.
I left this appointment frustrated and angry, the type of angry where you hold your breath and try not to speak or look anyone in the eyes because you know you’ll come unglued. I felt truly let down by my regular doctor. After my appointment I sent my husband a text asking him to come back to Switzerland and be my voice, I had nothing left in me. Normally I am comfortable enough to speak my mind, but this was different. I was so run down and exhausted and feeling really crappy–physically, mentally, and emotionally. It is a vulnerable state to be in, and when it seemed like like my main doctor dropped the ball and wasn’t paying attention to my case, I needed someone who could come in and take charge, and that person needed to know my medical history. This is easier said than done. My husband was at home, across the Atlantic Ocean which isn’t a hop, skip and a jump away.
Why was I let down?
Last week we were dealing with the lump in my wrist by doing neural therapy three days in a row. During the second session the doctor asked:
“Do you know why you get these lumps? Are they new?”
This wasn’t the first time she asked this. I repeated, “no they are not new and I’ve had them off and on for the last two years,”
When it comes to why I get them I told her this:
“My LLMD who had been treating me for the last 1.5 years said it caused by vasculitis from the Bartonella infection”
Paracelsus also tested me for Bartonella (it was very positive–just as it was when I was first diagnosed in 2016). This same doctor reviewed the positive test result with me on my first day at the Clinic, plus my admission paperwork and our discussion including the reason I came to Paracelsus was because of Lyme Disease and co-infections.
During this appointment with the three doctors, she talked about that lump again and said,
“We talked in our doctors rounds today about the lumps in your wrist. One doctor said we should check about Bartonella. Do you know if you’ve been checked?”
In that moment I could tell blood was rushing to my face. I was turning bright red and I couldn’t speak. I hesitated, then turned to look out the window while I silently screamed in my head,
“WHAT THE F***??!?”
She continued and asked if I already knew about the infection and I said yes, they diagnosed it at the same time as Lyme in 2016 from the bite I had in 2014. She asked how my LLMD treated it and I explained my previous complex antibiotic rotation that was treating both bartonella, babesia and borrelia.
There aren’t any words I can use to describe the rage and disappointment that was threatening to choke me. It shocked me that this seemed like a new diagnosis or possibility. It is part of the diagnosis that brought me to Paracelsus in the first place. From time to time over the last two weeks my gut was telling me that this doctor was viewing my enrolment at the clinic as being there “for wellness”, rather than realizing it was only a year ago I wasn’t even able to walk on my own.
Next there came a lot of chat between the doctors, but in German. Dr Hurtgen (the senior doctor of the two) said the best therapy for Bartonella would be whole body hyperthermia, but I can’t go up to 40C because it isn’t good for my body. My temperature should only go 38.5C and be held a long time. If only someone would have pointed this out last week when I roasted myself in my hyperthermia session at a temperature of 39.9C.
More chit chat between the doctors continued, and its as though I might spontaneously combust because I am so angry, making my fever feel even higher. Finally, he said:
“we have a plan, although we look depressed,”
I give him credit, he always given reassurance when I’ve felt like things are off. Tomorrow I am scheduled to see him again, so I will email him my questions ahead of time. There are things I would like answered, plus the results from my saliva test hasn’t been fully explained. Right now I am just so run down, weak and in pain l that I can’t communicate this frustration without choking up, breaking down and crying.
The bright side is now my week is lighter because the detox and dental surgery were cancelled. Hopefully this break will help, and I’ve made a note of the other therapies I’d like removed from my schedule.
I woke up feeling a lot stronger and more stable today, maybe the extra high dose (15 grams) of vitamin C yesterday and neural therapy to my adrenal glands helped? I am walking OK today and have a lot less pain.
This morning was just the regular treatments: PAP-IMI, magnetic field and I-Therm. After that I saw only Dr. Hurtgen… I am not sure how they balance the patient load but I am scheduled to see him from now on except for one last appointment with the doctor I was most frustrated with. The Naturopathic Doctor is still on my schedule, which I am incredibly glad for – he’s been a beacon of light throughout these last couple of weeks – he is brilliant, and it is very obvious.
I was a lot more calm going into this appointment with Dr. Hurtgen and we touched on my first concern which was the saliva results. There has been some mixed opinions offered so far, so I was hoping he would clarify things.
He confirmed that my adrenal glands are not functioning as they should, a common term for it is “burn out” or “adrenal fatigue”. The hormones associated with the adrenals are out of whack. This happened because of high stress loads in my body (physical and probably emotional) and high levels of pain and inflammation, which has been going on for 3+ years now.
The bad thing is that this doesn’t just affect the adrenal glands because the entire endocrine system is connected – it causes an overall hormone imbalance. My thyroid has been underactive for about seven years, so it’s a vicious cycle within endocrine system (pineal gland, pituitary, thyroid, thalamus, adrenal, pancreas, ovaries)–one part can’t be affected without a chain reaction with the rest.
What can we do?
We need to fix the baseline problems and have patience. We could replace hormones with biologically identically ones, but in his opinion, unless I’m 60+ years old he does not think it is worth the “biological cost”, meaning it will stop my body from trying to correct the hormone imbalance on it’s own.
So, we need to fix underlying issues that lead to chronic infection and hopefully in 6-8 months it should start naturally correcting. We will also continue to support these pathways with the essential nutrients and it’ll all work better on its own. For example, with thyroid/Hashimoto disease- selenium, iron and iodine are very important to manage or even correct the problem. We also re-discussed the GC Immune medication (the one that costs $500CHF per box). He thinks it is fine (and expensive) but he applies the same theory: that pill is replacing what the body should do on its own. By taking it then the body isn’t getting pushed into preforming the necessary functions. This is one reason inducing fever is good because the body has to do the work (fever stimulates the immune system). I suppose I will sit in my sauna daily when I get home.
Dr. Hurtgen and I also discussed the “complication” of me hitting bottom last week, he said:
“it was not ok but good that today we’re finally able to see some recovery,”
A healthy body should’ve been able to recover within hours of hyperthermia, not four days. I’m also certain the super high dose of Vitamin C plus adrenal injections helped a ton too.
I asked his opinion on cell extracts. He also disagrees in pursuing them because they won’t offer enough of a benefit for the cost. I think this is something to reconsider these at a different time or down the road.
He did neural therapy to my adrenal glands again. I’m not sure what is different with his ‘formula’ compare to the other doctor but it looked like pepto bismol and said he only likes “short and thin needles… not those long ones!” referring to the other doctor because she likes to “dig” into some places.
Yes. Gross. It could have been less painful to have this guy do the injections all along. Who knew?
I had deep oszillation and Schondorf therapy this afternoon and finished with oxyvein and a different infusion to help stabilize me. The infusion included a heck of a lot of vitamin C again, and zinc, glutathione and an adrenal support.
It makes me happy to write ‘January 18’ for today. I know I should never wish the days of my life away, but I am counting the sleeps until I’m home (15 more to go… which is a long time – 2 weeks to go).
Last night should have been my liver cleanse had it not been cancelled, which means I wasn’t scheduled to come to the clinic until noon. I had asked yesterday to get a trigger point massage and was fit in at 11 this morning. It helped–I was woozy for 2-3 hours afterwards and would have given my left hand to soak in a bath tub tonight. Unfortunately, the hotel doesn’t have one.
My other therapies today were IHHT, ozone and an infusion. I saw my other doctor for the last time as she is on holidays next week, she did another round of neural therapy injections to my adrenals. She will be writing out a prescription and instructions for me as we’re hoping I can continue these at home.
We talked about my body and the uphill battle with detoxifying the heavy metals. I’m not stable yet to do a bigger chelation protocol, if I was they’d rather do it at the clinic vs. home because it can be ‘intense’ for a lack of a better word. It is on the list for me to talk to my other doctor about next week as there are oral options (like chlorella and bentonite clay) or IV ones. She didn’t think my body could handle IV yet. She suggests I do coffee enemas at home as they will stimulate the detox processes that happen in the liver (the liver is our filter for toxins in and out of the body).
Now I have to wait and see what the other doctor decides on Monday, at this point I am scheduled for dental surgery on Wednesday and the liver detox at the same time. They’re worried my body can’t handle both. The dental surgery is the priority, but I’d like to be able to both given I am already here.
My labs from yesterday are slightly better in terms of my inflammation markers, they’re coming down by a smidgin’ which is better than going up. My white cell count is up still, but only a bit. It is a step in the right direction. Finally, she shared other new results with me and I relieved it is one less thing to worry about – I passed a test with flying colours! They tested for xenoestrogens (chemicals like PCB’s, pesticides and PFOA that act like estrogen in the body) and these are not an issue for me–thank my lucky stars!
I woke up this morning after a three-day stretch of strange sleep. I keep waking at 2am, 3am, 4am, and 5am – thinking it’s time to wake up every time. My LLMD in the US said this means my brain is trying to recalibrate itself. No one has given an explanation here… but I hope that this is true.
As much as the injections for my adrenals seemed to help a ton, I also wondered if they’re part of what was keeping me awake until 11pm and it was like I was on some sort of drug. Not intoxicating–but just way “up” and hyper, plus my heart rate seemed a bit fast. I was told twice first thing this morning before leaving the hotel I had a “bright smile today” which was reflecting how I was feeling: great.
In the Lyme life, it seems like all good things come to an end and within an hour things started to change. I was dragging my feet and exhausted again. Another two hours passed, and the nurses asked if I was ok and commented that I looked exhausted and worn down.
It was like someone flipped a switch. Lights on. Lights off.
Today I had local hyperthermia which was new for me. It is similar to having an ultrasound, they place gel on the area and then move the device across. Today they focused on my small and large intestine. If I am cleared to go ahead with the liver detox, then next week they’ll do the same thing to my liver. I also had a liver hot pack, they placed a cloth soaked in yarrow and other over my liver and applied heat for 40 minutes.
My remaining treatments were the usual ones: magnetic field, PAP-IMI, a colonic, and oxyvein plus a simple detox infusion. Next week we will talk about if I am stable enough to do a more direct detox infusion for heavy metals. I am pretty sure they’ll say no, so I’m not sure what the future looks like for these, but I plan to ask them to leave notes and recommendations for addressing this at home 6-9 months from now.
I met with my 3rd doctor, the naturopathic doctor and as always he is helpful and we can comb through a lot because his first language is English and he is a FAST talker. For those of you that don’t know me I’ll tell you that I speak fast, so when I say someone talks fast, believe me they’re speaking at a Formula One level.
I expressed my concern that while I agree that repairing my gut is the #1 priority, I am concerned that my symptoms come and go in phases still. While I’ve been here it seems that the other doctor is forgetting that the infections are the reason I came to Paracelsus, and I want to know we’re addressing it. He agreed, and remembered (unlike the other doctor) that I have a very active Bartonella infection and he said the ozone (when the blood is removed, oxygenated and put back in) will be very effective for it. I’m already alternating this with oxyvein at the clinic.
This is not something I can do at home. I am pretty sure I can find a Naturopath in the city who offers this… but how often would I be able to go? That is another question. Next he went over the stool test results and was concerned, saying it was of huge importance and it needs to be dealt with.
The pH of the blood should be alkaline and the pH of the stool should be acidic. My stool sample was very alkaline. This is a big problem and related to the antibiotics plus the stress and inflammation in my body. I have a good level of acid producing healthy bacteria in my gut, but it can’t help at this point for a few reasons. One of those reasons is that I also have some fungal overgrowth (candida). He prescribed something for this infection. With the overall state of my gut taking probiotics alone won’t likely help re-establish the bacteria as they should be present.
There is also some good news. I’ve been a healthy eater for years, and in trying to mitigate my symptoms in 2015 before I was even diagnosed with Lyme Disease, I took a daily probiotic and still do. This saved me from having developed more issues – the integrity of my intestinal track isn’t awful! The tight junctions haven’t widened out, which means “leaky gut syndrome” hasn’t happened but the junctions could still be improved.
Last and most concerning is that the immune cells in my gut (where up to 80% of our immune system exists) could not be measured because they are so low, this means I don’t have a measurable immune system in my gut because it is nearly non-existent. I am not sure why none of the others who’ve read these results mentioned this or did anything about it but I am very glad he has. He started me on two homeopathic meds to help repair and grow the mucosal lining of my gut, which is where the immune system lives.
Due to the active infections and WBCs being high all week he ordered to draw blood again which they’ve been doing since Tuesday. After my infusion this morning I got a big headache that didn’t go away after I ate lunch. Suddenly I was frustrated with the lack of cohesiveness between the doctors and overwhelmed with everything that has been happening. I’m too close to the finish line to quit now… but again, yesterday turned into a day where I kept wanting to cry.
I sent a text to Stephen about it… which I feel awful about because five out of the last seven days this week he’s been waking up to unhappy, frustrated texts. In each one I am coming THISCLOSE to being unhinged. After an Ativan and some lunch I stopped back to see the doctor, he gave me some kind of homeopathic med for the headache. He also told me that my labs were back and my inflammation markers are coming down little by little since the beginning of the week.
That is at least some good news.