It has been a while since I first wrote about my consultation at Breakspear Medical and subsequent diagnosis of Lyme disease. I have just finished my first three months of Lyme disease treatment at Breakspear and so I thought it would be a good time to write an update post.
Before I start, I want to say this. There are many different approaches to treating Lyme disease. As the infection differs between individuals, treatment is just as individual. What works for one, may not be right for another.
So what I am sharing here is only my personal experience and opinions. Your story may be entirely different and that is perfectly okay. I respect others’ choices and I ask that you respect mine.
Deciding on a treatment plan
Once all of my test results were back, I made a follow-up appointment with my doctor. This was in October. We went through what all of my test results meant and we then devised a treatment plan.
One of the things I like about Breakspear is that you are the one in charge of your medical care. At the end of the day, it is up to you to make the decision on what you want to do (with advice and recommendations from your doctor of course).
Supporting my mitochondria
Due to the fact my mitochondria (the energy powerhouses of the body) weren’t working correctly, I was first prescribed a number of supplements to help support them. I was taking Vital Plan’s Mitochondrial support at the time and I was free to continue taking this if I wanted to.
However, my doctor ideally wanted me to take higher doses of some things and additional supplements as well. My family agreed that I should try my doctor’s recommendations since fatigue is my worst symptom.
I therefore stopped the Mitochondrial Support and began Breakspear’s ‘Mitochondrial Resus Program’. This included taking: d-ribose, alpha lipoic acid, NADH, acetyl-l-carnitine, alpha ketoglutaric acid, creatine powder, co-enzyme Q10 with PQQ, magnesium, glutathione, borage oil, vitamin C and certain B vitamins.
Supporting my gut
The GSE is known to be effective in killing yeast and my test results showed that the yeast was very susceptible to it. Lauricidin helps to support a healthy balance of gut bacteria. The probiotics were chosen due to the fact I was missing some beneficial species of bacteria in my gut and these needed replaced.
Lyme disease treatment
When it came to treating the Lyme disease (caused by a genus of bacteria known as Borrelia), my doctor presented me with a few different options. He told me I could either have IV antibiotics, oral antibiotics or follow a herbal protocol (either Cowden, Buhner or Breakspear’s own herbal protocol).
If you have been following my blog for a while, you will know that I highly value herbal therapies. I decided to say no to the antibiotics for now. I followed my intuition and it told me to stick to taking herbal therapies.
I hoped that adding to my current herbal regime (and taking all of the other support prescribed) would be help me to progress forward in my recovery.
Why I decided to choose herbs
As herbal therapies are restorative in nature, I personally believe they are the route of least harm when it comes to Lyme disease treatment (assuming you use well-researched herbs and correct doses for you). Herbs focus on building up your own body’s defences to enable it to deal with the infection by itself.
Although there is a lot of focus on killing Borrelia in relation to Lyme (since it’s the bacteria at fault), I agree with Dr. Rawls’ theory that chronic immune function is actually the root problem.
Borrelia existed way before Lyme disease emerged and it wasn’t making people sick. So there’s definitely more to the story than a bacteria causing this illness. For more information on this, I would highly recommend reading the book Unlocking Lyme.
Given that I was fairly functional to start with, I thought it would be best to begin with herbs and reserve the more aggressive therapies, such as antibiotics, for a later date if I felt I needed them.
All of this, of course, is my own personal opinion and what I thought was best for me. My doctor was also happy with my decision.
The supplements and medication I agreed to take for Lyme
Through discussion with my doctor, we decided that I would continue to take two Vital Plan herbal supplements (A-biotic and Adaptogen Recovery). Additionally, I would take Nutramedix Stevia and artesunate.
Artesunate is an anti-malarial drug that is derived from artemisinin (which comes from the herb Artemisia annua). Breakspear uses this for the intra-cellular form of Lyme and it also covers the co-infection Babesia.
Artesunate has also been used experimentally in chronic fatigue syndrome for its anti-viral properties.
The first month
I started slow and added in my supplements one at a time, starting with the ones I knew I would be okay with. So long as I didn’t have a reaction, I kept adding in additional supplements.
I also had a herx reaction with the new A-biotic formula (Vital Plan upgraded the formula to include Japanese Knotweed and more potent forms of garlic and Andrographis, renaming it Advanced Biotic). Unfortunately, I had issues with this product even on the lowest dose.
I decided to stop taking Advanced Biotic and invested in some tinctures of Cat’s Claw, Japanese Knotweed and Andrographis instead. I discovered that I could tolerate a small dose of Andrographis but a higher dose was a problem for me.
So I think this may potentially have been the issue with the new Advanced Biotic for me. I asked in a support group how everyone else was finding the new formula and people were getting on great. So it really was just down to me as an individual, unfortunately.
Focussing on detox
There is a lot of pseudo-science banded around the internet when it comes to detoxes and detoxification. However, I have learned that it is really important to support your body’s detox pathways when you are treating Lyme disease. This is because the ability of your body to remove toxins is impaired by the illness.
Detoxing helps to minimise herx reactions and supports your body during treatment. If you are adding to the toxic load in your body (by killing bacteria) you have to add in detox strategies to help your body get rid of it.
Some of the herbs I took already helped with detox. But I also made sure to drink lots of water to support my kidneys, I took glutathione (which supports the liver as well as mitochondria) and used a portable far-infrared sauna on a regular basis.
In December, things started to go upwards
In October and November, I was getting glimmers of hope. I had occasional days where I felt better. In general, I was finding that my energy– while still low– was becoming more sustained through the day.
My health definitely started to go upwards come December. The differences I began to notice were subtle but became more and more significant.
I started being able to do regular things with it taking less out of me. My mood and motivation improved. I started feeling better in myself overall and the better days began to slowly outnumber the poorly ones. My pain reduced and, though I still had to plan a lot of rest into my days, my energy was beginning to slowly increase.
The weirdest and most wonderful thing was that post-exertion malaise was becoming less of an issue. I think a big part of that was due to the mitochondrial supplements. It also helped that I had progressed to a point where I could manage my regular daily activities without completely draining myself.
Christmas & New Year
I managed Christmas last year far better than I have in previous years. There was a stark difference even between 2016 and 2015.
I was able to go out for a couple of hours for dinner with friends on Christmas Eve, then I celebrated both Christmas Day and Boxing Day with family. The previous year I had to say no on Christmas Eve, found Christmas difficult and was completely done in by Boxing Day.
I admittedly needed two days of rest after Boxing Day to recover (post-exertion malaise reared its head since I was stepping out with my energy limits) but I recovered quickly.
By New Years I was feeling the best I had in a long time. Pain, fatigue, and feeling ill (my worst 3 symptoms) were still present but had definitely reduced. I’d say at this point my symptoms had improved by around 5% since starting at Breakspear. That may sound like a small gain but it honestly made a significant difference.
Cracks began to show
A couple of days into 2017 and I suddenly woke up exhausted and experiencing pain on the left side of my chest. It started out as a dull ache but it got progressively worse. At points, it was really intense and was making me feel really unwell.
I convinced myself that it must have been indigestion or heart burn. But tablets for that gave me no relief.
My mum was really worried about this, and truth be told I was too. So I made an appointment to get checked out by a GP. She couldn’t find anything untoward and there was no sign of infection. I left there with an anti-inflammatory cream to use for the pain.
I don’t know if the cream helped or whatever was wrong just ran its course, but the pain began to subside over the following days. I still had an occasional ache and sometimes a sharp pain when I breathed deeply or moved a certain way. But it was very short-lived so I never thought much about it.
Symptoms then slowly began to creep in
Over the course of January though, ever-so-gradually, other symptoms began to creep in. My fatigue slowly worsened, I experienced some mild headaches, my pain increased (particularly around my neck, shoulders, and chest). My neck felt stiff and I could hear it “crick” sometimes.
I felt iller, had occasional night sweats, my cough returned, tinnitus became louder, and I had occasional sweats/chills. My skin would feel like it was crawling after a hot bath or a session in my infrared sauna. My hands and the soles of my feet occasionally felt like they were burning.
All of that sounds awful, and it was. But I was still functioning relatively okay and though these were obviously bad days, they were nowhere near as bad as they used to be. So I just held onto the hope that this was a temporary setback and focussed on resting and recharging.
Over the last couple of weeks in January, I noticed that now-and-again I was getting out of breath really easily. Sometimes exertion– such as walking up the stairs– was making my heart race. It had been a while since this was a problem for me.
I then woke up on the 30th of January and literally felt like someone was sitting on my chest. I was really breathless and also had pain in my chest, which radiated around to my back. Although I wasn’t sure, I was worried that I had a chest infection.
I went to see my GP and left with a week’s worth of antibiotics. These definitely helped but the day after I stopped taking them, I began to feel unwell again.
Speaking to my Breakspear doctor
Luckily, I was due to speak to my Breakspear doctor. I essentially told him all that I have written here and his concern was that I had experienced a relapse of Lyme and (due to my symptoms) also Bartonella. Perhaps I should have contacted Breakspear sooner!
We hadn’t addressed Bartonella previously. Simply because, although abnormal, my test result wasn’t high enough to be considered a definite positive. However, given my symptoms, my doctor was confident that I have Bartonella in addition to Lyme.
I think because of the symptoms of chest pain, breathlessness and the fact my heart was still racing at times, my doctor wanted to treat me more aggressively.
A change of plan
I’ll be completely honest with you here. I personally believe that there are limitations to antibiotic therapy when it comes to treating long-term, chronic infections of Bartonella and Borrelia. I can write more about my thoughts on this topic if anyone is interested but that’s all I’ll say for now.
However, my intuition was telling me that this was something I needed to do. I have never tried antibiotic therapy. And I honestly feel like I have a ceiling on my recovery that I have not yet been able to push through.
Despite my fears and reservations, I think antibiotics are worth trying. After all, what if this is what I need to do to push past that ceiling?
Trying antibiotic therapy
The plan is for me to take two different antibiotics. If you are interested in the specifics, these cover the spirochete and cyst forms of Borrelia, as well as the Bartonella infection. I also have natural supplements to deal with the biofilm form of Borrelia.
I’m hesitant to name the antibiotics, simply because I feel they have more potential for harm. And what is prescribed is really down to an individual’s circumstances and what their doctor believes is best for them.
Due to the toxic nature of antibiotic therapy, I am also taking support for my gut, liver, kidneys and mitochondria. I hope that all the work I’ve done to build my body up will put me in a better position to cope with the antibiotics too.
I know for a fact, though, that I am going to be pretty miserable as I start this new treatment (due to herxing and potential side effects). But I hope that it will lead to better improvements in the long-term. If not, I guess it will be a lesson learned… if only treatment for Lyme disease was straight forward!
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