Monday, 22 October 2012

Confessions of a bad Lymey

I bet, like most facets of life, there are things that Lyme people just don't admit to.So here goes:

I'm a bad Lymey. I eat sugar (in small amounts). If I fancy a biscuit, I have one (but not every day). If it's custard creams or pink panther wafers (with added Vitamins A, D and E, so practically a health food!), I scoff for Scotland. Part of the reason I shop at Lidl is avoidance of sweet supermarket temptation (terrible packaging, no finest lemon tarts). Now the buggers are putting in an instore bakery. Candida-tastic. I hear from the US that sugar 'feeds Borrelia'. I can't find this in the literature (and I haven't looked very hard) so I'm ignoring it and feeding my thrush instead.

I also have a wee drinkypoos on a Saturday night. I know alcohol and Lyme do not mix. Lyme hangovers are like being trapped in a lift with death metal mood music. John Prescott is trapped with you and he's farting and punching you in the face whilst forcing you to eat used cat litter.....So I only have one glass of wine, but it makes me feel normal (and incredibly pissed for an hour).

I sometimes forget to take my tablets. I'm rubbish at taking them on time. I bought the biggest 7 day pill organiser I could find and then taped two of them together so I could fit all my tablets for the week in it. It takes an hour to fill it up. It's the size of Wales.

I went to a witch doctor. She pretty much had chickens feet and dried newts round her neck. She called herself an 'Energy Practitioner'. It was really weird, but I was so incredibly desperate to be well again, I did all the mad stuff she 'prescribed'. I even spent loads of money on a stupid widget that I had to wear at all times. It was supposed to neutralise bad electromagnetism from wireless gadgets and pylons. She was appalled that we had a cordless phone. At the time, I thought it was probably a bit mental. Looking back, I think it was very mental. The Klinghardty potions I took might have had an effect though- I did get 2.5 years of total remission (on the other hand, the antibiotics may have had something to do with it). I like to think I have an open mind and hey, we only understand a fraction of how the world works anyway, so who knows....

I worry that I have given it to my daughter and partner but am in denial about it. I was asymptomatic when I was pregnant but had only been free of symptoms for a few months and wasn't on antibiotics. She seems healthy, so I'm trying not to think about it. My long-suffering partner is always tired, he gets a lot of headaches. I don't want to be one of those families where everyone has it. 

Our carpets are gross. They are only held together by the stains. We can't afford to replace them now we've got to pay for treatment and neither of us can be bothered to shampoo them.

We moved to a house in a lovely street where everyone keeps their front gardens immaculate. Except us. I'm hoping to discover a new species of primate in it at some stage.

When I first got ill, I went on Eurolyme all the time and looked at You Tube videos of people with Lyme. Bad Idea. Got a bit obsessed and depressed about how F**ing Sh**ty it all was. I know much more now so don't do this anymore. Having a toddler who refuses to let you use the computer for more than 5 milliseconds at a time helps.

I'm taking a shed load of supplements and I don't have a clue why for most of them. The Lyme doc didn't have time to explain and I didn't the brain power to take it in anyway. I don't think there's much hard evidence for a lot of this stuff, but I want to get better, so I'm not questioning it for now. I know they make my wee smell of cabbage. It's not as impressive as Rifampicin pee though - that's the colour of Irn Bru!

.. so now you know! ;-)


  1. Well what an honest lymie you are! I have spoken to a number who like the occasional alcoholic drink despite what Dr Burrascano says. I have always enjoyed too much alcohol on a regular basis since being 17 and I sometimes wondered if that was partly why my immune system didn't cope with the Lyme. Once diagnosed I only had about two drinks of alcohol in 4 years my drinking partners of youth would never have believed me.

    However in the last year I have relapsed not just with a few Lyme symptoms but also the alcohol but only once or twice a week.

    Something I found really strange was that one of my current problems is sinus /right ear problems and eventually it was found that I had an anaerobic infection in my right ear( took over a year to get an ear swab done and only then because I thought to ask!!) the weirdest thing was that for some time I had found that if I had even a couple of sips of alcohol I would get this strange tingling sort of pulsing sensation in that ear. It didn't stop me finishing the drink but it was strange. I think the ear infection has cleared now although still sinus issues but now when I drink alcohol I no longer get that strange tingling pulsing sensation in my right ear.

    This disease is weird even when you improve enormously it keeps on with something strange.

  2. I have a new facebook page on lyme herbals but also we chat about supplements & diet if it's any help to ya!

    I know it's real tough to be good when ya feel so lousy, it's very tempting to comfort eat. You can make things a little easier by switching to stevia maybe - those low fat things are a con as they maybe full of salt or sugar or low sugar things maybe full of aspartame so ya can't win. No wonder so many folks get confused!

    Good healing ;) All the best, Jenny x

  3. HI Joanne/Jenny.

    That's wierd Joanne- your tingly booze ear! It is a funny old disease isn't it. Thaanks for the link Jenny, I'll look it up. I don't eat a lot of sugar, and eat fairly healthily mostly. I've lost about 6kg in as many months, just by not really wanting to eat and eating more healthily, but I wasn't overweight to start with. Yeah, I never buy low fat stuff, as you say, full of other bad stuff usually. Can you cook with Stevia? I like to make a cake now and again.

  4. Thanks for writing this. As I speak I'm having a 'I QUIT' day. I've been herxing so badly at 4am last night in tears I decided to give myself a day off. I've taken all the supplements, downing the glasses of water, and not taken the anti biotics. I'm also eating a twix bar with a cup of tea. To put this in perspective, I haven't had chocolate (or anything sugary) in 2 months. With the herxing it was getting to the point where I wasn't eating and struggling to get the supplements down me. So today I'm having a 'fuck it' day and will go back into the war zone tomorrow.

    I feel loads better knowing I'm not the only one who isn't a 'perfect' lyme patient. Thanks for writing your blog, I've been following it for a while and really enjoying it. I've had trouble commenting in the past though, so I hope this goes through!