Last week saw me travelling to Brussels, in my ongoing battle against Lyme Disease. I returned full of hope.
The response to my Learning to live with Lyme Disease post was genuinely overwhelming. So many messages of support from people to continue the battle. Through extensive research by myself, friends and family, we’d identified a renowned specialist in Brussels, Belgium.
I was able to book a full consultation with Dr. Boucher and took the Eurostar to Brussels Midi. Eurostar was a cracking service I’d use again. From there it was a simple 20 minute metro to my hotel – very conveniently located within a 15 minute walk of Dr. Boucher’s practice.
After discussing my symptoms extensively, including the onset of chronic illness mid 2013 and the ongoing battle to recover, Dr Boucher confirmed I had “multi-systemic infectious disease“. This being Lyme Disease, almost certainly complicated by associated infection, or infections, given the time it has been residing in my system. To be told this after enduring so much frustration with UK-based treatment, was a huge relief.
Suddenly, here was someone finally explaining to me the notoriously high rate of a false negative result from the Elisa test (up to 95% chance!). Also how such infections hide within the body, weather the storm of various medications, then attack the system again with a vengeance. This, he explained, was why I was benefitting to varying degrees from very strong but isolated antibiotic treatments, only to plateau and need to change to another similar antibiotic. For me that has been Doxycycline -> Lymecycline -> Minocycline. Neither was my current isolated dosage of Minocycline strong enough.
I now have a treatment plan – see below. Pretty sketchy as a result of Dr. Boucher’s handwriting and my notes. Basically I take Riamet for a 15 day cycle (3 days on, 2 days off x3). This is followed by:
* Phase 2a: Minocycline, Pantoprazole, Hydroxychloroquine, Fluconazole for 28 days.
* Phase 2b: I do all of 2a, plus Bactrim for 10 days. Then the 4 plus Azithromycin for 12 days. Then those 4 plus Flagyl for 10 days – this last one apparently will kill anything it sees hence I may suffer significant dips in health due to potentially severe onset of original symptoms.
* Then I repeat that cycle a minimum of 2 more times.
Other elements of the treatment plan include going totally dairy free for 3 months at least. Apparently dairy products can facilitate the harbouring of such infections as Lyme Disease. So I’ve immediately begun to create dairy free running fuels such as the dairy free apricot bars. Plenty of pureed fruit will also aid gut health, through easier digestion. Also, probiotic tablets twice a day.
Whilst this treatment plan covers around 4 months, Dr. Boucher expects it to be 5-12 months until I am hopefully cured. I expect to need another appointment with him in September, then it will be a case of liaising via email.
Through the whole process, I’ll be required to keep a very detailed diary of my main symptoms. For me they will be fatique, joint pain, neck pain, headaches, urinary habits, bloating. Each of these will be scored 1-10 according to severity on a daily basis. I’m also required to annotate which medication stage I’m on.
All of this will give us the insight as to how my recovery progresses, through overall mapping of symptoms, plus the trend for each main individual symptom. We had also discussed the extensive neurological impact of the disease which is thankfully much reduced at the moment.
Key Advice for anyone worried they may have Lyme Disease:
1. Look at the work of the UNESCO and WHO funded research group – their newsletter discussing emerging bacterial diseases is here.
2. See a briefer summary on their ‘seminar on Pathogens causing diseases‘
3. Prof. Brugère-Picoux is leading this particular research
4. These pages may also help you:
Borreliosis and Associated Diseases Awareness UK
Centre for Disease Control and Prevention
Here’s to good health 🙂
Jeff