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 I was given Vioxx (later withdrawn for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
You just wrote my experience bar the stomach problems which I did not have and the weight which is only an issue for me because I put it on probably due to eating too much of the wrong food.
ReplyDeleteI 100% agree with everything you say and it beggars belief that most doctors still don't listen.
In year 4 I had a 6 months break and was glad to return to antibiotics because symptoms had deteriorated. However I stopped antibiotics at the end of year four.
Two years after stopping antibiotics for Lyme I have various Lyme like symptoms no were near as bad as before and cycling 4 weekly. Over the last two years I have had various courses of antibiotics for a persistent ear infection outer ear and anaerobic my guess is it is a chance infection. It took over a year to get it diagnosed and despite my saying it always improved on antibiotiocs and deteriorated when I stopped taking them - doctors and consultants ignored this. In desperation I asked for a swab - positive for anaerobic infection lots of different antibiotics and several months later it re occurred - another ear swab confirmed an anaerobic infection.
Each course of antibiotics improved my Lyme like symptoms. Trying to get doctors and Consultants in UK to consider a persistent infection with Lyme is like trying to say the moon is made of green cheese.
What is it with these medics do they not follow research at all.
Biofilms have been recognised in 80% of bacteria and now shown in Borrelia - time for medics to think Biofilm and stop assuming antibiotics are a one week course to cure all - bacteria do not remain planktonic for long they want to live in a community - biofilms are known for the ability to withstand courses of antibiotics.
The problem is not antibiotics resistance the authorities need to worry about but antibiotic persistence due to Bio film and in the case of Lyme the many other ways it has developed to evade our immune system and antibiotics.
Don't you just want to scream.
Joanne,
ReplyDeleteThanks for sharing. Yes, it makes me want to scream too!
I have recently started taking a supplement called Lumbrokinase - it is supposed to help
break down biofilms. More time needed to determine if it is helpful.
Are you familiar with allicin/ allicinmax? It's a stabilised garlic compound with powerful antibacterial, antiviral, antiparasitic & immune boosting properties. I highly recommend it, especially if you're having problems getting abx - I have continued to take it for a few years, it produces herx-ing in me (and others I know of) although at the moment I'm really using a maintenance dose of that in combo with abx. It's available from Boots and online at quickvit.co.uk (I have no connections with that, I've just used the site to purchase before, mainly because it offers free international shipping).
I have also had strong herx reactions using Samento, which is thought to help 'expose' the bacteria and make them more susceptible to abx and other antimicrobials.
I know you have an abundance of research and an impressive library of information on your site, but I just thought I'd share these with you in case it is helpful. They feature a lot more in the anecdotal evidence and less so in the scientific research. I'm all for more solid research on Lyme, but it doesn't help me recover right now, so I do play about with different things - some (such as allicin and samento) with some good results; others not so much...
Also - I agree with you about there being bigger issues in Lyme than abx resistance; but I do think the idea of a drug resistant spirochete is hardly science fiction... It's also an easy contradiction of policy, which to me suggests nobody really knows what they are talking about!
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