This Lyme Disease update will be quick, mostly because I am short on time and perhaps don’t have a lot to say? I wrote an update in May about how I’ve been doing, which is still very up and down.
Whenever someone asks how I am, my answer is always “up and down”. In terms of my current treatment there isn’t too much going on. After returning from Paracelsus I had a lot of issues, including new ones. Two months ago my body held out on me and my period came 18 days late; this is something that has never happned before. A few months back during one of my monthly phone call appointments with my doctor at Paracelsus he felt I was having an “endocrine crisis” and this was another bit of evidence to support that. Even when my health was at its worst in 2016 my period still came on time. Having missed so many days seemed so strange.
I’m definitely better off than I was two years ago when I couldn’t walk or even hold my head up some days.
Through all the mess my Lyme-life was upon returning from Paracelsus they decided I should stop most of my meds. Up to this point there have been adjustments here and there, but to summarize my current treatment protocol I can tell you I do IV infusions twice a week, so have a catheter in my arm for three days of the week, then freedom for the next four days before it starts all over again.
I spoke with my doctor from Paracelsus once a month from March until June. When we last spoke in June I’d been doing poorly for a while and I could hear the disappointment in his voice; I knew he was expecting my body would have taken a turn for the better, not worse.
My original plan was to head to Paracelsus near the end of the year. I had made no any solid plans for it–I think because, in all honesty I didn’t want to go. Just the effort alone to get there is difficult for me. When I spoke with my doctor in June, he felt it was best for me if I came sooner than later. He felt that my immune system just wasn’t working.
There is a balance that our body should be able to maintain, it can keep us healthy from invading germs if there are no underlying issues within our bodies. Studies have even shown that some people test positive for borellia (the bacteria causing Lyme) but show no symptoms; their body can handle the bacteria and keep it from taking over. This is what my body failed to do.
Through my 500 days on IV antibiotics we killed a lot of the infections, not just Lyme, but Babesia and Bartonella too. Then came a point where it felt as though I was killing as much of my healthy cells and tissues as we were killing the infection; that is when I stopped antibiotic treatment.
People often ask if it is possible to get rid of the infection entirely
The answer I’ve heard most from listening to various doctors, or reading what they’ve written is no. To kill and be certain you’ve killed the infecting microbes, you’d have to kill the host too, and in this case–I am the host. This means that though the antibiotics killed a lot of the infection once I stopped them it became the responsibility of my body to keep up the fight.
The bacteria are stealthy and can trick the immune system to ensure their own survival. Top that off with my immune system being weak and immeasurable according to the tests done at Paracelsus, we knew it would be a heavy task to rebuild my immune system so it can take over the role the antibiotics had played.
Based on the last few months and what I’d explained to my doctor he felt that my immune system wasn’t doing much for me. With that, the result is bacteria that can multiply and grow, risking a serious relapse.
This is why he was so solemn when we spoke and encouraged me to return as soon as possible so we could come up with a new plan.
Hearing this was hard for me. I felt broken when I got off the phone. When Stephen got home that night we discussed it and agreed that it is better to keep on top of things rather than allow me to deteriorate and have to regain the ground we’ve already covered.
As I mentioned in my earlier blogs about Paracelsus, I had a team of three doctors. Two of the doctors are now gone, which–for me does not matter as I would have argued against seeing one of them again. The doctor who remains at Paracelsus was my favourite, and he is incredibly smart, going back just to see him would have been worth it… I have a lot of trust in him.
But there is a new doctor.
In May I received the Paracelsus newsletter introducing the new doctors. When I saw Dr. Richter’s biography I knew going back to the Clinic would be worth it. When they had a turn over in the staff, doctors left and new ones came in. One of the new ones had a long battle with Lyme Disease himself. Him and my other doctor will work together with me this time.
This is an excerpt from his biography
After completing his studies in human medicine in the late 1980s, Uwe Richter’s medical career began as a radiologist. In 1992, he turned his attention to new economic challenges when he realized that as a radiologist he would not be able to meet his high goals of a holistic approach.
As an innovative entrepreneur with executive responsibility, he built up various medium-sized companies in the following years and managed them with great success.
In the period 2010/2011, he suffered from severe burnout with associated depression and chronic Lyme disease. He was completely incapacitated for work from that point on and had to retire completely from working life for several years.
He could not put up with this heavy blow and the associated, deep case and turned to one of the most renowned molecular physicians (internist) of Germany, Dr. med. Ulrich Strunz, u.a. known as running pope by forever young.
With the help of a micronutrient therapy and his prescribed running training, Dr. Strunz back to a healthy, energetic life.
The treatment by Dr. med. Strunz was a decisive turning point in the life of Uwe Richter. As a doctor newly inspired and motivated, he retreated completely from business life in 2012 and devoted himself, tirelessly and very successfully, to studying, learning and training, in order to be able to practice again as a licensed physician, his actual vocation. Since 2013 he runs a practice and day hospital in Berlin (Quickclinic).
He has further developed the concept of (ortho) molecular medicine, because not only the right substances (micro and macronutrients) belong to the healthy body but also an excellent detoxification and a functioning repair of the body cells. And, just as important in the central process of a healthy body are excellently functioning mitochondria (energy power plants of the body).
In two days we will leave for Switzerland. This time my husband will stay the entire time with me, as we will only be away three weeks instead of seven weeks like last time. It isn’t easy for him to leave work for this long, but it was important for me he could come this time. My last visit was incredibly hard, physically and emotionally.
We will be home in early September, only to have to turn around and leave again at the request of my disability insurance company.
I know many other people with Lyme Disease fight for disability insurance. It was a battle to get it approved to start with. They denied my initial claim, so I had to appeal it. The appeal process took so long it was an entire year before I could get disability benefits. The financial strain we had in 2016-2017 was a situation I never expected to find ourselves in.
Being approved for disability benefits helped ease some of that financial burden, but they only approved me for two years before they would reassess my case. In March my insurance company sent someone to our home to do an assessment, and although I didn’t receive a report regarding the outcome of that visit, recent discussion over the phone has informed us that the assessor deemed I still could not work.
I understand that insurance companies deal with many cases and different people, and I can imagine the case managers might cross difficult personalities throughout their career. I am now on my third case manager and am not sure why I was passed down three times?
My first encounter with my current case manager was in December. I got off the phone upset and in tears. I’d never been spoken to like that before; she was condescending and had absolutely no empathy for how difficult this illness is. When I was finally off the phone I called my parents, crying. If you don’t know me too well, let me tell you that the last time I called my mom in tears was in 2006 during my third year of University when I got a wicked phone bill and (oops!) a speeding ticket that together would have drained my bank account clean.
Fast forward back to the present day, I had yet another ugly encounter with my case manager. I am sharing all of this because after discussing it with other insurance and medical professionals in my community and a lawyer–I learnt that some case managers bully their clients. I was so upset after I got off the phone with her so that was when I sought advice and a couple people suggested filing a complaint; I didn’t want to get anyone into hot water at work, but the way she treated me was completely unfair, and I am certain I am not the first person to feel this way.
Ultimately we are all human, having a human experience. Who are we to judge others and treat them poorly when we are all only doing the best we can?
I will share with you the letter I wrote to my insurance company’s complaints department, and afterwards I will share the resolution and I hope that this helps other people who’ve been in my shoes or find themselves in this situation. No one has the right to make you feel like dirt on the bottom of their shoe.
Please accept this letter as my official complaint and request for a new case manager for myself, Sara Brunner.
My claim as been with (NAME OF INSURANCE COMPANY) for over two years, and I’ve dealt with many members of the (COMPANY) staff, including my two previous case managers, (NAME) and (NAME) who were very pleasant. I’ve always been treated with respect and dignity until my recent case manager, (NAME) has been involved.
The very first conversation we had late in 2017 was incredibly upsetting to me; I felt as I was being spoken down to and her statements were very condescending. In giving the benefit of the doubt, I thought perhaps she had a bad week and someone had recently been very rude with her, and the attitude she presented with over the phone was a result of that and I tried not to take it personally. I was so upset that I called my parents in tears, and then wrote to my mental health counsellor and we discussed the details of my first experience with (NAME) in a few of my sessions.
In early 2018 I was told that a third party company would be sending someone to my home to do an assessment related to the upcoming “change in definition”, the individual came to my house at the end of March 2018. I’ve never received communication, written or verbally regarding that assessment. He confirmed with me at the end of our home visit that he would have his report to my case manager within 10 business days. I’ve never received any further communication regarding this visit.
Next, on July 26, 2018 I received a call from another third party organization informing me that my insurance company has requested another Infection Disease Specialist review my case and that I was going to be sent, expenses paid by (INSURANCE COMPANY) to Mississauga, Ontario. I explained that I am scheduled to travel to see my team of doctors who are managing my current treatment, and that I would be out of town from August 19, 2018 to September 6, 2018. The receptionist said we could schedule my appointment upon my return from seeing my current team of doctors.
The following day, on July 27, 2018 my case manager, (NAME) called me to ask how I have been doing. The phone call was on hands-free and my mother, who was at the house helping me at the time, was listening. She is willing to provide an affidavit with her recollection of the conversation if requested. I mentioned to (NAME) that I had a phone call the day prior from the doctor’s receptionist and we discussed the appointment options that were presented. I explained that the August 1, 2018 appointment date was too difficult for me, as we just had a death in our family and I am accompanying my mother to take my grandmother to the airport in Winnipeg, Manitoba, four hours west from Dryden. We continued to discuss how I am doing at present, and I explained that my symptoms were still “very up and down”. (NAME) told me near the end of the conversation that it appeared the doctor’s visit was scheduled near the end of September 2018, but that the third party that schedules his visits would confirm the date with me.
On July 30, 2018 I received a call from the receptionist for the doctor once again, to set a date of August 15, 2018. I expressed a bit of surprise and was told my case manager said it must be on this date, that I must see the doctor before I travel overseas to see my team of physicians. The receptionist then told me if I was unable to attend on this date that I was supposed to call (NAME), which I did.
I recorded our conversation; after being treated poorly by (NAME) in the past I felt having witness in the form of a recording was an appropriate step to take. The following is a transcript of the conversation:
(NAME) (further referred to as “A”): (INSURANCE COMPANY), A speaking Myself
(further referred to as “M”): Hi A, it is Sara Brunner calling
A: Hi, how are you?
M: I am okay, how are you?
A: I’m good, thank you
M: Um, I just got … (interrupted by A)
A: What can I help you with?
M: I just got a phone call, from the, um clinic
M: and they had discussed about the date on the 15th and I just wanted to talk to you about it just because they said I would have to travel to Thunder Bay first, which is like a four hour drive and I am not, definitely not able to do that by myself. I haven’t driven on the highway in a few years yet, and I am not at that point. Um, so having to get to and from, that’s an extra eight hours, plus the travel and I am assuming that I’ll be staying overnight, so that means I would get home and basically have to turn around again to fly out to see my doctor in Switzerland. Its just going to be really, really difficult for me physically.
A: okay, so the appointment is for August 15th and you said your leaving August 19th, is that right?
A: Ok, so we need for this assessment to be done for yourself, now that gives you four days to ah, travel to Switzerland, um, we do need – the thing with the -?- is that the specialist is not going to be available at all times. Ok, so the specialist is very difficult to get and we’ve managed to get the head of Infectious Disease is Mississauga. Ok, so, having you travel to, as she mentioned, um Thunder Bay, is that right?
A: So having to travel to Thunder Bay, we can arrange transportation so you don’t have to drive there. M: So I would be able to fly right from Dryden?
A: Not from Dryden, we can get you a ride from Dryden to Thunder Bay. There is no flight out of Dryden directly to Toronto, that is why we have to do this detour M: okay, umm, so, would I be flying out on the afternoon of the 15th? A: we’re going to try our best to get you arranged for – you wouldn’t be flying on the 15th, you would have to fly out the day before
M: okay, and then when would I get home?
A: you would get home the next day, the day after the assessment
M: okay, is there any way I could have family accompany me instead?
A: you can have whoever you want coming with you, but we wont be able to reimburse you for that that, ah, travel. If you want to have someone there, you’d have to pay the expenses. We are paying the expenses for yourself.
M: and, um, so what if I am having difficulties that day and I need assistance when I get to the airport and my hotel room?
A: assistance in terms of getting into the hotel?
M: getting dressed
A: what kind of assistance
M: getting dressed, like last night my husband had to help me again.
A: That is something that you can have your husband there, but we won’t be – we cannot pay for both, two people. We’re going to reimburse you for yourself, but if you want husband there, you can have your husband there. It is up to you.
M: okay, I am going to have to give you a call back, is that ok?
M: okay, thank you
A: No problem – Line goes dead as I say goodbye –
By the end of the conversation I was crying which is why I asked to call back, I was too upset to speak. The symptoms I experience are physical, leaving me with physical disabilities that vary from day to day. I am not sure how to manage for two nights in a hotel room without physical assistance. I don’t feel that it is appropriate for me to have to finance this trip for my husband to help with my daily requirements. All of our income goes to living expenses and medical expenses.
Throughout the entirety of my disease process we’ve had to pay out of pocket at the Mayo Clinic in the United States, at a well respected Infectious Disease Specialist’s clinic in the United States and now at a very reputable clinic in Switzerland. The financial commitment we have put forth to regain my health has been enormous, but I also believes it illustrates I am taking every step I can to get well again to be able to contribute again in a meaningful way to the world around me.
Pushing my body to the limits to rush to this appointment and then to turn around and travel again isn’t healthy for me. If these travel plans include a four hour drive to Thunder Bay on the 14th of August, then a two hour flight to Toronto, plus another hour to drive to Mississauga and back again that is two nights and three days of travel. If I arrive home on the 16th of August, it will leave me with one day at home on the 17th before we have to leave again. We fly out of Thunder Bay on August 19th, but have to travel to Thunder Bay the day prior on the 18th. That leaves one day; not four like (NAME) mentioned in our conversation.
I am not trying to avoid this appointment; I welcome another doctor’s opinion on a complex case such as my own. The travel that it will take to get to this appointment will be hard on me, it will physically wear me down and to do so days before an international flight to see my team of doctors could make my symptoms worse by causing a flare up from the exhaustion. The travel and exhaustion will also lower my immune system before international travel; which is harmful when my immune system is still learning to fight on its own, making me more susceptible to contracting a virus during the back-to-back airport and airplane travel periods.
Also, I would like inquire as to why I am being sent to another doctor, as this hasn’t been explained in detail to me. I made improvement under the care of my Infectious Disease Specialist in the United States and will continue to see improvement with my new team of doctors. I have only been under the care of my team in Switzerland for seven months and given the complexity of a disease process that has left me with tissue and neurological damage, the process to regain my health won’t take only a few months. As per the physician letters provided earlier this year, that have provided extensive detail regarding my current health condition, it is expected that it will take time to overcome this illness, but I do expect recovery. My family physician has been very involved and supportive throughout this unfortunate journey as well.
My change in definition was in March of 2018 and it was not until July 27, 2018 that I’ve had any communication from my case manager; nearly four months has passed, but now it seems imperative that I see the third party doctor within the next two weeks. I don’t understand why there is suddenly a rush, especially since I have had no formal communication of any of the above noted concerns.
I would like to please have information in writing, in regards to both the Change of Definition conclusions and the regarding the request to be seen by another doctor. Furthermore, I’d like to take this opportunity to ask for the following:
1. A new case manager, I can’t continue to feel bullied and inconsequential by my case manager and would like to be reassigned.
2. Please allow me to see the third party doctor after I return from seeing my medical team in Switzerland.
3. Please allow to have my husband come with me to see the third party doctor so that he can continue to provide the physical care that I require, with his expenses paid.
Thank you for your time,
The situation was resolved with respect. The staff member who I’ve dealt with regarding the complaint has made it possible for me to see the specialist after we return, and Stephen will come with me.
So, after I told you this would be short and sweet–it turned out to be really, really long. We’ll be arriving home and then turning around to see this specialist and I am keeping my fingers crossed that he is open minded and receptive. I also imagine all the travel to and from Switzerland, then back out again will take its toll. Everything leading up to this trip back to Paracelsus, and now this upcoming visit with the ID specialist has left me popping Ativan throughout the day while I try to keep up with everything and pack. Nothing has come easy this week, I had symptoms flare up that left my hand to look like there was a small plum looming beneath the surface because it was so swollen. My other arm was in lock down with an IV line in it for three days. Today I am free of both, my symptoms subsided after this morning’s IV.