Twitter Pinterest

RUN eat REPEAT



Brussels Sprouts Hope

Brussels Sprouts Hope

Clock10th July 2015

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.


eurostar-brussels-bound
 alofs-schuman-brussels


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.

lyme-disease-treatment-plan

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.

lyme-disease-medication-2aBack in the UK, my GP has been absolutely superb. He has prescribed the full range of treatments and we’ve been able to access the medication as directed. So I’m on day 7 of a long and hopefully positive process. I’ll be rattling for months with this lot (below is phase 2a only)!

 

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

 

trailrunningmag-distance-runners-attractiveHopefully I’ll soon be bombing up trails and fells, rather than really struggling or sometimes being barely able to walk/stand. Maybe then this claim in @TrailRunningMag will prove correct 😉

 

 

Here’s to good health 🙂
Jeff

Leave a Reply

Your email address will not be published. Required fields are marked *

Alice says:

Really interesting post thank you ! I hope you have made good progress with the lyme. Are you still seeing Dr B? I am currently battling what I think is chronic lyme without success.

jeffmclfc says:

Yes Alice I am. In fact I have another appointment with him next Friday 19th. Thanks for your kind words. How long have you been struggling?

Alice says:

Hi Jeff,
Glad it’s going well. I have suspected chronic lyme (badly ill 3+ yrs but I suspect much longer) and trying to weigh up options (though Dr B’s website says he is full). Also not tolerating antibiotics well (severe migraines) and I know that is his main approach.

jeffmclfc says:

Hi Alice
Yes his approach is antibiotic based. And some are very aggressive. Have you read Healing Lyme by Stephen Buhner? Superb book and very informative. The new edition was published Dec 2015. http://buhnerhealinglyme.com/
Please let me know anything else you discover. Good luck.

Alice says:

Hi – yes just got the Buhner book actually and am also trying LDN – day 2 so far. I am not doing well with antibiotics so was hoping LDN might pick me up enough to allow me to take a slower herbal approach but nothing else has helped to date so don’t know if LDN will either!

Hosting says:

The most important thing to remember is that each person’s body is different, so it’s good to figure out what works for you and your body. If you are looking for ideas, below are some tasty recipes from your fellow runners. Run, eat, and feel good!

aileen says:

Hello Jeff,
I’ve just started treatment with the same practice. (After years of ill health and an incorrect diagnosis of psoriatic arthritis in the US, which has been overturned in Belgium). I’m 28 days into the process, and am following a treatment plan similar to yours. Can you tell me – has it worked for you? I hope so (for both ours sakes!)

jeffmclfc says:

The treatment plan is working brilliantly Aileen. I’ve been on it for about 18-24 months and the difference is remarkable. It’s critical you monitor all symptoms as directed by Dr Boucher so you can work out the best treatment plan for you personally. Please keep me posted on your progress 🙂

aileen says:

Thank you Jeff, I’m very glad to hear it’s going well for you and somewhat re-assured. I’m a bit further down the line with the lyme and have gone form being a “fitness fiend” fully of energy to a person struggling to make it up the stairs and in constant pain (joints.) I feel like I’m 90 years old nowadays. It’s truly awful, but reading your blog, I can see that you know what I mean. Very best of luck to you in future and thank you for being frank and open about what happened to you – it means a lot to others in the same situation. Take care.