This post could take me into some pretty dangerous territory in the fight against Lyme - how to treat?
It really should be simple bacterial infection = antibiotics (abx). For some reason, researchers have persisted in claiming that 30 days of abx will cure Lyme, and if you're still ill after that, then you don't have Lyme. EVEN IF YOU STILL HAVE A POSITIVE BLOOD TEST.
Keeping it short and sweet: this causes lots of problems for people with late diagnoses.
What I don't really understand is why the chief medical examiner for England, Professor Dame Sally Davies can say: "Bacteria are adapting and finding ways to survive the effects of antibiotics, ultimately becoming resistant so they no longer work."
And in this article: "There is a broken market model for making new antibiotics, so it's an empty pipeline, so as they become resistant, these bugs, which they would naturally but we're breeding them in because of the way antibiotics are used, there will not be new antibiotics to come."
And just this month, the BBC chose to publish what I think was supposed to be a post-apocalyptic vision of a world without antibiotics where the author painted a 'terrifying' picture of dying from a cut finger, simply because it got infected.
It seems the powers that be are worried about antibiotics losing their effectiveness. And bacteria adapting. Yet if this idea is connected with Lyme it becomes laughable - crazy patient.... reading too much on the internet.... from microbiology journals.... umm.....
The argument against using long term antibiotics is that there is no proof that the risks outweigh the benefits. Well, a personal point to those policy makers:
I have been on antibiotics for 3 and a half years now.
I have continued to make a steady improvement in this time.
I have suffered some side effects, such as diarrhea, which is usually the worst 'risk' mentioned during these debates.
I have had some nausea and sickness caused by doxycycline (this is also experienced frequently by those given doxy as a prophylactic against malaria). At this point I took a break, and switched to erythromycin. Eventually I had some niggling stomach issues, took a break and switched to azithromycin.
I have followed a careful diet and taken probiotics throughout.
A few years ago I broke my thumb. I was given Vioxx (later withdrawn for causing heart attacks); the Vioxx hurt my stomach; I developed a stomach ulcer; the drugs I was given for that made me vomit; I developed IBS - all connected; I had an endoscopy; food sensitivity testing; eventually diagnosed with Leaky Gut; followed a diet, took some supplements and my stomach healed. This took about two years.
I have never had any side effects or consequences like this from taking long term antibiotics.
My improvements: Lyme-related:
(just ignoring the shoulder issues for a moment)
I can concentrate enough to drive again
I have the strength to drive again
I can walk again, without any support
I can stand up in the shower to wash my own hair and shave my legs - all in one shower
I can lift a hairdryer and straighteners, and style my own hair
I can enjoy reading again
I can go places on my own without being afraid I'm going to pass out, get dizzy and need help
I went back to university to continue my PhD studies
I could live on my own again
I could lift a kettle, a glass of water - things that were too heavy before
Cook for myself again
Shop for myself again
Carry my own handbag
I put on weight and went from wearing a child's age 14 trousers (in my twenties), or double zeroes to being, at almost 20 pounds heavier than I was at my sickest, a size 2
My acne began to clear up
My headaches were much reduced
My migraines much less frequent
My nausea disappeared and my appetite returned
My leg pain was much less and my joint pain minimal
I did yoga again
And many, many more
There is not a single thing on that list that I would say, oh, it's not worth the risk of long term antibiotics. Every single one of those freedoms is hard fought for by me and I should be the one who decides what risks are worth it in my life, to make my life better - the life I want to live. Not some doctor, who can decide to give antibiotics long term for acne (not life threatening) but not for Lyme disease. There is something seriously wrong with that logic.
Please help spread awareness of Lyme disease