I often start by apologizing, and I shouldn’t but here I am appologizing again. I said I would try to get my Paracelsus treatment diaries out a lot sooner than has happened. There are about four blogs left to edit and post, which means this blog your reading right now is out of order–but there have been a couple significant days I wanted to talk about and reflect on.
My intention had been to write a post like this in April as an “anniversary”, which isn’t the word I’d like to use but it seems to be the only one that fits. April is significant for me–and now I think of it… so was March as they all have important days that have played a big role in where I am today.
The Bite that Changed My Life
April 28, 2014–while getting ready for work my husband noticed a bite mark on my shoulder near my armpit, it looked angry and red. It concerned him. My husband had knowledge of Lyme Disease long before it took over our lives… his family is from Switzerland where Lyme has long been acknowledged and treated for decades–his cousin and grandmother have both had it. He strongly urged me to go to the clinic, so I went to see a nurse practitioner. She thought I had a spider bite. I knew nothing about Lyme Disease and didn’t realize by walking out of the office with only ointment that my life would change in a way I’d never have imagined possible.
March 3, 2016—my lab work returned from Igenex and my local family doctor called me with the results. I tested positive for Lyme Disease; the IgG and IgM both had positive bands: one was positive according to CDC guidelines, and the other was equivocal. That wasn’t all, I also tested postitive for Bartonella.
The Path of Lyme Disease Treatment
March 16, 2016—we travelled 1700km to Washington DC to the Jemsek Clinic. This was the first step in the path toward treating the infection and healing. I knew I was sick, I mean–you have to realize something is seriously wrong when your 29 years old and can’t walk on your own or brush your teeth. After a long assessment Dr. J took a breath, exhaled, and looked me in the eyes and said
“You are very sick. Most people aren’t this sick by the time they get to me.”
This was a sobering moment. Everything all suddenly felt very real. It started to feel like the exam room was shrinking around me. We talked about my options and they suggested IV antibiotics instead of only oral antibiotics due to the extent of the infection. Soon June will carry another significant day. On June 6th 2016 I had an IV central line placed in my chest where it would remain for the next 506 days while I fought my way through the worst days imaginable. Many of those days I wondered if I would ever live a normal life again I wondered if a day would come that I wouldn’t wake up.
My Lyme Journey
Going back to the start of this post when I apologized for putting things out of order I also wanted to give an update now that I’ve been back from my four weeks of treatment at Paracelsus in Switzerland in January 2018.
I spent January in Switzerland at an out-patient clinic called Paracelsus. Daily therapies were exhausting, and I had setbacks while I was there. I am no longer on antibiotics, Paracelsus is a biological medicine clinic, so much of my medication now is homeopathic.
The first and most important thing to say is that going to Paracelsus is only the first step in this new biological medicine direction of treating Lyme Disease. Their therapies weren’t a one stop shop intended to cure me. There is still no prognosis for me. We have no idea how long it will take for my nervous system and the rest of my body to fight the infection and heal from the damage it caused. Although I don’t regret my decision to go with the traditional route of antibiotics, taking them for so long also did a lot of damage to my body and it needs time to heal.
After returning from Paracelsus I had a big med schedule, and when I say big, I mean ridiculous: I took meds 12 times per day. My med schedule was so regimented that I had to plan when to eat because some meds needed to be on an empty stomach while others needed to be taken before, with, and after meals.
The kicker was that I continued to become more symptomatic again, I became terrified and paralyzed with fear over the last few months. I was getting reoccurring fevers, uncontrolled body and bone pain, joint pain and inflammation, weakness and needing help to sit up, stand up and walk. It was happening all over again. I wondered if I made the wrong choice to go to Paracelsus and stop antibiotics.
I’ve kept in contact with the doctor at Paracelsus. In fact, due to things getting worse we have monthly appointments so he can help keep on top it all while we work together to move past this and go forward. With all of the symptoms re-emerging he had me stop most my meds to see if there was an improvement. I continued to get worse.
The reason we stopped the meds is because he thought my body was under too much stress, we had done a lot, and were continuing to do a lot to it. My body needed to recover again. It turns out we have to move a lot slower with treating the infection and healing my body–and treatment needs to come in layers: first is repairing my gut and immune system so that my body can fight for itself. Once that is under control we can move onto detoxing heavy metals and mold. If I do those things right now, according to the doctor in Switzerland I may end up hospitalized. My body wouldn’t handle it.
The words “too sensitive” keeps getting used. Of course I want to say:
“I am NOT sensitive,”
In my head I hear “you’re too weak”.
I’d love to throw the book at this disease and do everything all at once and get it over with. That is not the reality. It would be dangerous. The word ‘sensitive’ also brings feelings that aren’t intended by the word–but its the way my brain is wired, and I am trying to work through these feelings. Sensitive does not mean I am weak or inadequate. Sensitive means listening to my body, treating it as kindly as I can and taking time to allow it to heal, fight and recover. This is something I have to remind myself of daily.
Oral meds aren’t the only part of my treatment plan from Paracelsus, I do weekly IVs, alternating between a Lyme infusion that contains antiviral and antibacterial homeopathic meds. The infusions also contain a handful of other supporting vitamins, minerals and other homeopathics. I finally started the IVs in March.
One of the other meds they’ve prescribed is LDN (low dose naltrexone)–which needed to start at a very small dose and titrate up over a four weeks to the full dose. By March I finally reached that dose, and in theory LDN is supposed to help with pain, inflammation and regulating my immune system
Through March I still continued to get worse. I felt like a shell of a human, some days I was so emotional I just cried. A lot. Uncontrolled. This was hell for me, I hate to cry–and its something I need to allow myself to do more often. If I am being truly honest, I have to say most days I woke up and went to sleep feeling hallow and hopeless.
Another thing that happened in March has to do with my long term disability claim. In 2016 I applied for it through my insurance plan from work. My claim was initially denied, on the grounds that my symptoms weren’t disabling enough to stop me from working…. If you put a hidden camera in our house, it would shock you. If being carried or pushed in a wheelchair because I couldn’t walk wasn’t enough, I also had IVs daily–sometimes twice daily, and those often made me so violently sick I cried from viciously puking my guts out. But hey- that isn’t disabling, right?
I fought their denial and sent an appeal to the insurance company. Eventually they approved my claim, but it took a year to get approved, and when it did it was on a two year condition. After two years I would be re-assessed and in March my re-assessment happened.
An independent consultant hired by my insurance company came to our house. We talked about my story from the very beginning. Everything was rehashed. All the ugly stuff, all the pain and despair–all of it–we had to talk about it. The interview took nearly three hours, and it took all I had to get through it, physically and emotionally. Near the end I wasn’t able to tell my story without crying. We needed to stop twice for me to collect myself. The consultant was kind, and I think he saw that I reached my limit–he mentioned that he could tell this was hard for me and that I’m normally very “collected”. Through my tears all I could manage to keep saying was,
“Sorry. I never cry. I’m not a crier,”
Somewhere over my last 30-odd years I convinced myself crying must equal weakness and I’ve always worked hard not to show emotion. If I’m less emotionally attached, there is less chance of hurt or disappointment. These layers of false beliefs seem to run deep within me and I’m working at breaking through–but it is much easier said than done.
We’re into May now and it has been two months since that assessment and I haven’t had a response from my insurance company yet. The assessment was to determine if I can return to any job, not my own job. I have no idea what to expect. This is another weight on my shoulders and I hope there is understanding and compassion involved as they review my case and approve another year or two to allow me to fight and heal from this disease. My monthly disability cheques aren’t very much but they are still a necessity and I don’t want to gather up the energy to fight a denial again. Being denied disability isn’t just a loss for myself–its a loss to everyone who isn’t able to work because they are fighting this disease, and I am fighting for them as much as myself.
Finally April rolled around, and I was seeing some improvements, which I credit to starting the weekly IVs and reaching my full dose of LDN. I had a stretch of awful days still, requiring full assistance to move–but I also had a 6 day stretch of relatively pain free days which was amazing. Symptoms seem to go in cycles now, good days mixed with mediocre days, but still some really awful ones.
My level of exhaustion is through the roof. After discussing a few other symptoms and changes these last couple of months with my doctor in Switzerland we came to a conclusion:
An endocrine crisis.
The endocrine system is made up of the thyroid, parathyroid, thymus, adrenal glands, pituitary gland, hypothalamus, pineal glad, pancreas, and in my case, ovaries. To simply state it, the job of the endocrine system is to secrete hormones that control the functions of cells, tissues and organs.
For more on the endocrine system you can click on this link to read more about its role in the body.
So what is our plan?
We’re waiting. I continued on minimal meds to allow my body time to recover. I have homeopathic meds in my IVs that influence my adrenal and thyroid glands, and I’ve also recently started weekly neural therapy (you can read about them here in my previous blog posts). We do the injections over my liver, intestines and adrenal glands.
In terms of the effectiveness of the neural therapy it is too soon to tell–but the last two times I’ve had injections, the next day I’m exhausted, but then the following 2-3 days I have more energy than I’ve had in years.
Next week I speak with the doctor in Switzerland again. I am hoping I can slowly reintroduce the meds I brought home from Paracelsus. I would like to start fighting again, but I have to be patient and trust that they’re making the right choices for me.
The Big Questions
“How are you doing since going to Paracelsus?”
Up and down. I have good days, functional days and awful days.
It is too soon to tell how I am progressing.
Some days I don’t know if I am going backwards
Other days it seems like I’ve moved mountains
“Will you go back?”
Maybe. It depends how I get through the next 4-5 months while in contact with my doctor from Paracelsus. If I can continue to feel like I’m moving mountains from time to time, then yes. I probably will.
“Was it worth the money?”
I have certain opinions about Paracelsus, but overall I am glad I went. The doctor who I continue to be in contact with is the reason I would go again, I have a lot of trust in him. He has a brilliant mind.
In upcoming blog posts I talk more about the frustrations I experienced while I was there.
The investigations they did were extensive and I’ve learnt a lot about the short-comings and issues within my body. I’ve said before the testing was the best value that came from my time at Paracelsus.
For now I continue to be patient and try to accept this “wait and see” approach.