Hallowe'en

Not a great time of the year for Lyme. Well, not that there's a good time for Lyme, but....  Hallowe'en is an excellent reminder because it's really just supposed to be FUN. (This year I was Sleeping Beauty. Probably with less 'beauty' and more 'zombie' - although 16 hours sleep might add some points...)  

Also the no sugar* (healthy fuel, healthy body.... we only had a little left over 😋) and no alcohol (stops medication working), um, and no energy really take the fun out of it.

... Can I just take a moment to point out I've not had a SINGLE cocktail since May? Not ONE drop of alcohol. Psychic mother even cut short my mental arithmetic in a restaurant as I was attempting to calculate the half life of this really really really really tempting cocktail and whether it would be out of my system by the time I infused my next dose of antibiotics. Imagine:

Scene:

'HARVEST'

Local & organic 'farm-to-table restaurant

LONG ANTICIPATED FIRST VISIT 

(Anti-nausea medications perfectly timed -  I was HUNGRY!)

ME: [silently thinking] I could eat almost anything on this menu... so many veggie choices!  Organic cheeses! Wild caught fish!** Grain bowls.... quinoa! Wild rice! This must be how a normal person feels when they could have practically ANYTHING from a menu*...
How do they choose?!

[turns page] 

oohhhhh, those cocktails sound so good.... green tea with cucumber vodka & lime... I wonder how many units of alcohol in a martini glass here? I could have it tall.... I wonder if antioxidants in green tea cancel anything out? I wonder what the half-life of vodka is... [reach for phone, unlock screen...]

PSYCHIC MOTHER: [barely glances up] Don't bother calculating how long it will take to get a cocktail out your system.... you have blood tests in the morning, they'll still show alcohol.

ME: I was just looking.... 
😲

 [thinks] Damn. Blood tests. Forgot about those. But wait..... HOW DID SHE KNOOOOW??!! 

*Limited diet: general super healthy diet supports treatment; some treatment protocols follow specific diets
**Yes, technically I'm 'pescatarian', but I think it sounds a tad pretentious. And super-extra hipster...

Now THAT'S spooky!

PSYCHIC MOTHER
My Dad used to joke to my Mum, "If your mother was a witch...." & trail off
Not sure if he got scared 😉 or realized he was saying it about me too...😜
But this photo is just too good....!!
(Don't have to be psychic to guess she's not going to love it as much as I do.)

Back to today.... there's dressing up in elaborate costumes (yourself, house, child, dog... whatever)/ the excuse to dress up or wear crazy make up if you like doing so, but need the excuse! And the million different Pinterest ideas you just HAVE to try one day (mostly baking - with more sugar). None of those is especially 'Lyme-friendly' (it's that 'I need energy' thing).  I didn't even get pumpkin carving this year... putting a hacksaw & 'the sharpest knife I can find' in either hand didn't seem like the best idea... A little decorating, joint effort:

The American 'Happy Halloween'
does puzzle me...

I did binge watch Stranger Things 2, at the weekend, of course, (it's SO good!) because my weekends are for resting right now: "resting enables healing"- not something I usually embrace, but thank you Netflix!  But (no spoilers) while attempting a couple of 'very simple' Pinterest Halloween projects in the garage; there was scratching in the roof space above my head, and the first image that popped into my head was a demogorgon. I mean, not consciously, a good story just stays with you, right?! 

At least I still have 2 arms ;-)

I have to admit, anything I manage to do successfully with my arm (arms.... PICC line has been a bit uncomfortable too, I've had to be extra careful with it) feels like an accomplishment - even wrapping some toilet roll around a football & a mannequin or sticking some sticks through a flower pot & some bin bags! And some creative results... in the dark!

Quite honestly, these were because I was determined not to fall asleep after physio, as napping
 seems to be messing up my sleep. I thought (hoped!) I'd sleep at a 'normal' time if I made myself
 stay awake - of course,  I never learn... didn't work!

 But my Pinterest 'shadow witches' didn't look too bad! (In the dark.)

On my hunt for Halloween quotes - specifically Shakespeare's witches from Macbeth,  I decided I like this one from Tim Burton instead. It feels like it could have many applications and feels more fitting with my blog. I definitely feel like I dress up some (most?!) days - my true self is still in bed, sleeping. Sometimes, especially this year, it feels like my brain stays with it!

"Every day is Halloween, 

isn't it? For some of us..."

~ Tim Burton ~

Lyme disease: one size doesn't fit all

Well, as planned today was 'A Day Out The House', mainly because I had physio - but we also stopped in at a couple of shops, then coffee and a bagel, and some time just wandering round the mall afterwards.  I did set multiple alarms on my two phones (one UK, one US) and put a 5-hour energy drink ON TOP of the first phone so I HAD to move to get it and pick up the drink to put the alarm off - it worked in waking me up anyway........ even followed by 30 minutes fighting the snooze button.

I actually felt better today than I have for a few weeks, generally (not shoulder-ly).  I'd run out of my antibiotics, probably about a week ago when I really thought about it - last week was one big blur of sleep.  I didn't really plan it, but I figured I'd see how I did without them and I guess the answer is still not good.  I did have a whole host of symptoms flare up - it's really hard to tell though, whether it is an active infection of borrelia bacteria, damage it has caused in my body in the past (which may or may not go away), reactions to chronic pain (which are complex and way more systemic that I ever could have understood before - especially when nerves are involved), or - at this time of year - a bug I might have picked up.  Or, more likely, a combination of any of the above.  

On the plus side, previous times I have stopped the abx, within days the Lyme headaches are back, and I feel like there is a pair of giant hands inside my skull, squeezing my brain - I didn't have those headaches this time, which I suppose is good, although instead I felt like I wanted to pull my left kneecap off, and the pain in my ankles, left hip and wrists has never been as painful as this week.  If just one day (two now - I guess if I still feel better tomorrow it might be a sign) of abx is enough to make me feel a bit better, that's also a big improvement. If it continues, it will be more telling.  Here's hoping!

I re-read this article on the Huffington Post's website today: "The search for global education: The 300,000 - Ticks" which was published last November, after the CDC in the US estimated there were an estimated 300,000 cases of Lyme a year - a significant jump from its previous estimate (which I can't remember right now, but it was far lower - perhaps a tenth of that).

It's an interesting interview and a good read for Lyme patients, or their family and friends as two Lyme Literate doctors discuss the complications of treating Lyme, and present their ideas on why it can be so difficult to treat.

One of the points in the article is that Western medicine has a strongly held belief - 'Pasteur's postulate'  that each disease has one cause and one cure (I have read of this being called 'germ theory' too - credited to Louis Pasteur) - not that every patient is different.  In the article, Dr Richard Horowitz, a well known name in Lyme circles, and an advocate for Lyme patients, discusses co-infections and other factors (e.g. a weakened immune system) which have to be addressed in order for patients to recover.  This is difficult to treat because each individual has different environmental factors, diets - lifestyles really; and treating each patient as an individual is far more appropriate than trying a one-size-fits-all approach.  

http://www.pinterest.com/gmun22/

It's a shame that something so obvious is such a revolutionary idea, but with increasing awareness about Lyme, within the general population, and the medical community, hopefully this will help create new treatment protocols, and more doctors will listen to those few doctors who are leading the way.... hopefully to a real breakthrough.

“We shall require a substantially new manner of thinking if mankind is to survive.”

   ~ Albert Einstein

Antibiotics: The Controversy

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

http://www.tickbitepreventionweek.org/ 

It never rains but it pours...

This is how my life feels right now.  All the stress with my shoulder has weakened my body and my Lyme symptoms seem to be taking over again. I saw my doctor last week and he thinks that I have probably lost about a third of my progress because of my shoulder.  I have all kinds of symptoms again - headaches, leg pains, flu-y type feelings, sweating, shivering, sore teeth, upset stomach, visual disturbances, fatigue and tiredness, unrefreshing sleep. I also have a rash which may be Lyme-related or may be an allergic reaction and an ingrown toenail.  Oh, and a sore shoulder!


I have been reading a lot of Lyme literature again, kick-started by this BBC article about a new study into chronic Lyme disease.  Basically, there are two arguments wrt "chronic" Lyme.  The standard argument perpetuated by official authorities is that Lyme disease is easy treated by one month of antibiotics and then you're cured (even if you still have symptoms). The second argument, supported by Lyme-specific research groups and Lyme patients is that people with disseminated Lyme disease - where the infection becomes systemic - need long term antibiotics to treat a more complex infection because one month of antibiotics doesn't work in these cases.  The problem is that there is not ONE reliable test that can confirm - or exclude - a Lyme diagnosis.


The article (which, as usual, is full of misinformation about Lyme) discusses a new method of diagnosis where uninfected ticks feed on someone with disseminated/ long-term/ chronic Lyme and then the ticks are tested to see if they have acquired the Bb spirochetes that cause Lyme.  A study on primates showed this did happen.  Basically the study could "prove" that it is possible for Bb spirochetes to survive a course of antibiotics.  I never understand why this is so controversial given that other bacterial infections (e.g. TB) and even acne require antibiotics for longer periods of time.


It's actually more interesting to get into the real microbiology of Lyme spirochetes and learn that they are very clever, very adaptable little buggers that can morph into various forms in order to avoid capture by the immune system. One study (in mice) actually showed that the spirochetes could stop the immune system from detecting them as they invaded the lymph system.


In a way it's comforting to read other people's stories and experiences. This site has lots of them.  I read a particularly interesting story on there this week about a physician who got Lyme.  She was ill for years and years and saw many doctors for various symptoms before she eventually was treated for Lyme. Even although she's a doctor, she was still dismissed by other doctors who didn't take her seriously because her symptoms seemed so disparate. There are hundreds, probably thousands, of stories online about people's Lyme experiences and they are all very similar. 


No-one knows why some people get very ill with it and other people manage to fight it - or never develop it after a bite.  I suppose it's just the same as some people being allergic to certain foods, or getting acne, or having a low alcohol tolerance.  Everyone is different.  There are various theories, but no answers yet.  It does seem that the longer a person has an infection untreated, the higher the bacterial load on their system, and the worse the symptoms become - pretty simple really.


So back to my situation right now... It is also the case that for whatever reason, spirochetes attack the weakest parts of the body, or attack when the body is weak.  At the moment my symptoms have all resurfaced because my body's basically fighting on two fronts.  My doctor says that right now my shoulder has to be my priority because getting my body stronger - healed - will help my immune system fight the Lyme again.  But as soon as I can handle it we are going to take a more aggressive approach to the infection again, probably with some increased antibiotics.  Right now I have increased some of my natural supplements that help in various ways.


There's not really a lot of information on having surgery while fighting Lyme, so I've not been able to find out much information on it.  It doesn't really seem to be affecting my shoulder as much as the surgery has affected the Lyme.  I suppose it's impossible to really separate them out, but it feels like my energy has to be focused on shoulder recovery and physiotherapy whereas before, all my energy was focused on the Lyme fight.


Another thing that is common in other people's Lyme stories and blogs is the difficulty of explaining it to people. It's often called an invisible illness because it doesn't necessarily make you look ill.  It's hard to explain how much energy everyday things use up when most people never give them a second thought. Even having a shower can use up half the day's energy sometimes - which is an improvement on using the whole day's energy, like it did a couple of years ago.


I haven't written my blog for a couple of weeks because it's not been a great couple of weeks.  I'm sore, everything feels like a huge effort and I want to sleep all the time because I feel like I have no energy.  And I really don't like to moan and to complain so I was waiting to write something good.  But really, I started this blog to try to spread awareness of Lyme disease and to help increase understanding of the illness so I guess that means talking about the bad stuff too.


This is my favourite song this week. Nothing like a bit of musical motivation and inspiration!

My New Year (February) Resolution.....

I will write more! I started this blog as my final journey "out of the lyme light".  I guess it is a lesson to everyone, and especially to me, that perhaps that is never as simple and straightforward as we think it's going to be.  Why should it be really?  The whole course of treatment - never mind the illness - has been two steps forward and one step back, so the final uphill battle is not going to be any easier!


I didn't, of course, expect to break my shoulder and have to add that in to the mix.  That is life reminding me (as if I really needed reminding) that shit happens. So, while I am still battling those most stubborn little spirochete buggers, I am left doing it one armed!


In all seriousness, this has complicated things.  I am more tired again. Pain is exhausting. I am back to relying on other people to do things for me and that is so frustrating in so many ways. Although it is because of a different injury, it is so difficult not to associate it with going backwards health-wise, in general.


 Stopping my antibiotics was planned for December and Dr S said we should go ahead as planned... see how it goes.  So I did.  It took about three weeks for the symptoms to creep back up on me - an improvement from the last time I tried to stop them when the Lyme symptoms hit me full force in about two days!  But after the giant hands returned to squeeze my brain inside my skull and I slept 17 hours one day, it seemed pretty obvious that now was not the time to stop them - I was not doing very well.  The day I realised I was going to have to go back on the antibiotics, for an indefinite period of time, I cried.  Mainly because it has now been seven years of being ill and I was really hoping I would be able to stop them and move on...... symbolically.  But after thinking about it, this is fine by me. Really. When I look back over those seven years I was SO very ill and I have made such huge improvements.    And if I have to take an antibiotic once a day it's really not the end of the world.  I'd much rather get the benefits from that than suffer the alternative.


Anyway, I plan to stick to my new year's resolution.  I have lots to write about - my shoulder injury, possible surgery in Kentucky USA; my Lyme doctor in the UK being called up before the GMC and no longer running his clinic (I only found out about this last week, I am shocked and saddened that Lyme in the UK is following the exact same path that Lyme in the US has done, several years later); various recent Lyme-related articles in UK mainstream media - the information isn't exactly great, but at least the word is beginning to get out there. So.... lots going on this year and hopefully lots going on in Lyme-world in the UK this year that will really help bring Lyme the attention it needs to that sufferers get the treatment and support they desperately require.


So.... a favourite quotation for a new year:

“Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning.”

        

            ~ Albert Einstein