Well it's been a long while but here I am again. So what's new? Well not a lot in some ways and loads in others. I still have Lyme Disease, I was bitten again in 2014 and yet again recently I removed a small tick from my ankle after going blackberry picking. I'm nowhere near as well as I was and at times the Lyme seems to take over.
It's not just Lyme though, the whole of last year and the first half of this one my rheumatologist played around with my meds as he thought they didn't suit me. No matter what I thought. I spent most of that time in the wilderness of no mess or mess that worked inadequately to the point that my arthritis progressed worse than it should have done. Finally I am now back where I started, they seem to have kicked in and so I'm back on Methotrexate. I still sleep for England the day after my weekly dose but it's worth it for the benefit.
In other health news I started to follow up a diagnosis of a genetic lung defect I had years ago and one which I was told to ignore by my GP, the Alpha 1 antitrypsin deficiency, known as A1AT. After having a cold which went on for months I asked a different GP about it to be told something completely different with the net result it has been followed up big time. I now have a diagnosis of something in my lung which has shown up in an X-ray. Lung tests last week were abysmal so I now wait until mid novemeber to see someone about that. Meanwhile my breathing had become awful, I have a permanent pain in my back and nothing shifts it. I have night sweats for England too. It will be interesting to see what transpires with this.
It's not all gloom and doom though. I'm still just about running my business and managing to do some awareness stuff on the net for Lyme Disease. My garden is looking better than it has for years, helped in part by us actually having had a summer this year, albeit with a late start.
I'll leave you with a picture of my favourite geranium which has bloomed for months and is still in bloom now, Lavender Pinwheel. Well I tried by Blogger doesn't want me to add it. Will have to have another go some other time. Ciao
Monday, October 10, 2016
Wednesday, July 23, 2014
Update July 2014
Having neglected this for so long, I find I have a rash of new readers. For their benefit more than anything else I thought I'd do a quick synopsis of the last few months.
The year started like any other, cold weather means weeks of being indoors, my body seized up by the rain and cold. Devon was very wet this year as was the whole country I suppose but our village was cut off by floods several times, no way as bad as those poor people on the Somerset Levels however. At least we escaped the biting easterly winds of other winters.
I worked as much as I could over the worst of it and then I saw a Lyme 'Specialist' at Winchester Hospital having been referred to the new National Lyme Clinic as it then was. Little did I know that the clinic would close again at the end of March due to problems over its' funding. The conssultant was pleasant but didn't seem to know much about Lyme disease. I was given 3 months low dose antibiotics and told to read Stephen Buhner's book on healing lyme with herbs. All my NHS blood tests came back negative so 'no active infection' then.
The herx I had whilst on the antibiotics was severe, obviously even at a low dose some bugs were being killed. this then abated and after several weeks I reached a plateau on which I remained. The consultant did not want to see me again, I was apparently cured. My mobility is still awful, I have worse neck problems than I have ever had and the creaking and clicking drives me to distraction. We did the first show of the year in Cornwall in fairly decent weather although it was very wet one day, it wasn't too cold so I coped OK with it.
I then started working towards all my summer gigs, internet sales wnet through the roof for me so I was sewing as much as I could. At a show in Oxfordshire I had the luxury of a late start, a shower and breakfast whilst Worst Half opened up the 'shop'. In the shower I took a tiny tick nymph off my right foot. I didn't think too much about it, it was very small. One week later we had a camping weekend with the family in Central England, a weekend of family meals, sitting in the sun and visiting a kids play park. It was glorious.
Next morning my mood changed, I scratched the back of my knee only to find I had removed a large tick. I was frantic (sorry!) I couldn't see the wound so got Worst Half home from work to inspect it and the rest of me for any more I had missed. All I had was a hole in the back off the knee, no more nasties. I phoned our surgery, saw a GP later in the day and she prounced the hole quite big and that she though the tick had been very well embedded. I was referred to the 'wound nurse' for 3 weeks for ongoing treatment. Luckily this has now all healed Ok although I was told there was a slight rash round the hole but not enough to be called and EM rash. Several days later I fely very fluey so was back on the doxy again. This time I obtained some more and took a longer course and supplemented with biofilm busters and lots of antioxidents and probiotics. I felt dreadful the whole time.
After 4 weeks I couldn't cope with keeping out of the sun any longer, I work at mostly outside events this time of year and it's been a nightmare avoiding sunlight, so now I've stopped the doxy and am just on a herbal regime. I have the bulk of my summer shows in the next 4 weeks and needed to be reasonably with it. One day last week I was so dozey I drove over a wooden post in a car park much to Worst Half's annoyance, he'd only just fixed it since my last mishap with a lampost after cranial therapy!
So that's where we are now, a bit less brain foggy, a little less sunburnt and rushing headlong into a 2 months of full on outside events. My garden is neglected although I've been collecting Salvias to grow in pots which dont need digging, weeding, tidying and pruning. Just the odd water, a repot ain the spring and thye look fab on my south-facing patio. Best of all they survive from one year to the next here. That said, it applies to me too, I'm no better, not a lot worse and survive. I should be thankful for for small mercies I supoose.
The year started like any other, cold weather means weeks of being indoors, my body seized up by the rain and cold. Devon was very wet this year as was the whole country I suppose but our village was cut off by floods several times, no way as bad as those poor people on the Somerset Levels however. At least we escaped the biting easterly winds of other winters.
I worked as much as I could over the worst of it and then I saw a Lyme 'Specialist' at Winchester Hospital having been referred to the new National Lyme Clinic as it then was. Little did I know that the clinic would close again at the end of March due to problems over its' funding. The conssultant was pleasant but didn't seem to know much about Lyme disease. I was given 3 months low dose antibiotics and told to read Stephen Buhner's book on healing lyme with herbs. All my NHS blood tests came back negative so 'no active infection' then.
The herx I had whilst on the antibiotics was severe, obviously even at a low dose some bugs were being killed. this then abated and after several weeks I reached a plateau on which I remained. The consultant did not want to see me again, I was apparently cured. My mobility is still awful, I have worse neck problems than I have ever had and the creaking and clicking drives me to distraction. We did the first show of the year in Cornwall in fairly decent weather although it was very wet one day, it wasn't too cold so I coped OK with it.
I then started working towards all my summer gigs, internet sales wnet through the roof for me so I was sewing as much as I could. At a show in Oxfordshire I had the luxury of a late start, a shower and breakfast whilst Worst Half opened up the 'shop'. In the shower I took a tiny tick nymph off my right foot. I didn't think too much about it, it was very small. One week later we had a camping weekend with the family in Central England, a weekend of family meals, sitting in the sun and visiting a kids play park. It was glorious.
Next morning my mood changed, I scratched the back of my knee only to find I had removed a large tick. I was frantic (sorry!) I couldn't see the wound so got Worst Half home from work to inspect it and the rest of me for any more I had missed. All I had was a hole in the back off the knee, no more nasties. I phoned our surgery, saw a GP later in the day and she prounced the hole quite big and that she though the tick had been very well embedded. I was referred to the 'wound nurse' for 3 weeks for ongoing treatment. Luckily this has now all healed Ok although I was told there was a slight rash round the hole but not enough to be called and EM rash. Several days later I fely very fluey so was back on the doxy again. This time I obtained some more and took a longer course and supplemented with biofilm busters and lots of antioxidents and probiotics. I felt dreadful the whole time.
After 4 weeks I couldn't cope with keeping out of the sun any longer, I work at mostly outside events this time of year and it's been a nightmare avoiding sunlight, so now I've stopped the doxy and am just on a herbal regime. I have the bulk of my summer shows in the next 4 weeks and needed to be reasonably with it. One day last week I was so dozey I drove over a wooden post in a car park much to Worst Half's annoyance, he'd only just fixed it since my last mishap with a lampost after cranial therapy!
So that's where we are now, a bit less brain foggy, a little less sunburnt and rushing headlong into a 2 months of full on outside events. My garden is neglected although I've been collecting Salvias to grow in pots which dont need digging, weeding, tidying and pruning. Just the odd water, a repot ain the spring and thye look fab on my south-facing patio. Best of all they survive from one year to the next here. That said, it applies to me too, I'm no better, not a lot worse and survive. I should be thankful for for small mercies I supoose.
Tuesday, July 22, 2014
A poem for Lyme
prompted by a website looking for Lyme themed poems I wrote this in five minutes flat this morning. Wish my brain worked better at other times and at more useful things!
Get up and work through it
you're not really ill.
If you say you can't work
well just take this pill.
It might make you happy
but it wont cure your woes.
Ok have this painkiller
for the pain in your toes.
Now you've got brain fog?
but not quite all day?
Your face droops? your neck hurts?
OK, have it your way!
Your tests are all negative.
Of course they are right.
What on earth do you mean
no-one understands your plight?
So twenty years later
at the end of your tether
You go surf the net
and find all together
a whole group of people who suffer like you
so you talk and you talk and they tell you what to do.
Ignore all the medics who keep ignoring you.
Then you have to self treat and you're on your last dime,
to pay for a genius who tells you it's LYME.
So you sigh with relief and cry tears, not of joy
but of years of frustration at our government's ploy
One day truth will out
and revenge will be sweet
but all I do now is constantly treat.
I've lost my career and my friends have all flown
but my knowledge of Lyme has most certainly grown.
Get up and work through it
you're not really ill.
If you say you can't work
well just take this pill.
It might make you happy
but it wont cure your woes.
Ok have this painkiller
for the pain in your toes.
Now you've got brain fog?
but not quite all day?
Your face droops? your neck hurts?
OK, have it your way!
Your tests are all negative.
Of course they are right.
What on earth do you mean
no-one understands your plight?
So twenty years later
at the end of your tether
You go surf the net
and find all together
a whole group of people who suffer like you
so you talk and you talk and they tell you what to do.
Ignore all the medics who keep ignoring you.
Then you have to self treat and you're on your last dime,
to pay for a genius who tells you it's LYME.
So you sigh with relief and cry tears, not of joy
but of years of frustration at our government's ploy
One day truth will out
and revenge will be sweet
but all I do now is constantly treat.
I've lost my career and my friends have all flown
but my knowledge of Lyme has most certainly grown.
Thursday, January 02, 2014
You never know
Each winter I eagerly await the arrival of the siskins. They're acrobatic little birds, with loads of energy and watching them on the niger feeders makes a wonderful diversion. In an average winter they arrive here in the early days of January just when the weather has turned a bit colder. In cold winters they tend to arrive before Christmas which is what they have done again this winter. Already we have quite a flock, so it may turn out to be cold in the next few weeks, but of course with our weather you never quite know.
And so it is with Lyme Disease, you never know what is around the corner. As the year turns I am drawn back to remembering how it was when I was first unwell, finally collapsing on Boxing Day 1992 after six to eight months of increasingly ill health. I had never heard of Lyme Disease then and was treated for months for ME, chronic fatigue, various viruses and finally depression. As the months turned to years I never recovered my previous good health and boundless energy. I worked, ran a youth club, was in a new relationship, taught lacemaking, played skittles once a week and had been a keen supporter of the nightlife in our village pub. I was pushed from one NHS consultant to another over the next seven years, finally Rheumatology homed in and decided I had a non specific arthritis, could do with losing some weight and put me on a raft of pills and steroids which ensured the weight kept piling on.
In desperation I turned to the internet, found that the pills I so hated and had been trying to stop were indeed causing a lot of the problems. I stopped them dead. My GP went mental and warned me about side effects, withrawals and increased pain. I started to feel marginally better but when I was functioning at perhaps 30% of normal the improvement was only marginal. As each little improvement came and went so did another symptom. My body was acting up in a seemingly random fashion, the only constant was that nothing quite worked properly. I was cold, I was hot, I could walk, I couldn't walk, I could concentrate, I was in a brain fog, I was tired, I couldn't sleep, my feet hurt, my neck hurt, I had a spider permanently crawling up my back, I had shooting pains in my hands, my shoulders froze, my wrists swelled up, the swellings disappeared, I had strange rashes, the rashes disappeared overnight, they itched, they didn't itch and so it continued relentlessly.
My GP was fed up, I became the heart sink patient, I kept away from doctors as much as I could, only presenting when I had an acute infection of some sort or other, infections which dogged me most winters. All this time I was main carer to my elderly and increasingly demented mother and was spending 4 days a week 150 miles away. The days at home I spent sleeping, trying to recover enough energy for the next onslaught. A new GP told me I was exhausted and offered to write to my mother's GP and social workers and tell them I could not carry on, the problem was my mother who disbelieved I was ill, not the officials.
In the autumn of 2006 my mother was in respite care, for her sake not mine and was in a home briefly. I had time to breathe. Browsing the internet one day looking for the cause of yet another rash, I came across a picture of the EM rash. It was eerily familiar. In 1992 before I became ill I had had this rash and had been to my GP with it. I had been told it was some sort of insect bite and to put some cream on it, nothing serious. I started reading about this rash, it was caused by a tick bite. I had had cats since 1989 and one in particular had brought in a lot of ticks in the summer of 1992, not knowing how to remove them I had asked a neighbour who showed me.
Looking at the pictures of the rash was a lightbulb moment. I was pointed to the help group Eurolyme who in turn pointed me to a private doctor, I was assured the NHS would not be interested; indeed they were not, some time afterwards my Rheumatologist wrote that had she suspected Lyme I would have been tested and that she would be pleased to treat me again when the private Lyme treatment failed. Seven days after my mother died in 2007 I had a clinical diagnosis of Lyme disease which by then I had had for almost 15 years. After 16 months of a fairly conservative treatment I was substantially recovered, sold my wheelchair and had started my own business.
With Lyme as I said you never know what is round the corner, 7 years on and I am relapsing again. I was never tested for many of the co-infections which the bite brings. I suspect I need to address these. I have recently started the process of referral to the new NHS Lyme Clinic in Winchester although the forms I filled in and the blood tests I have had seem strangely incomplete.
So how do I cope day to day? I still run my business which takes me away from home between April and October some 4 days a week on average. I live mostly in my caravan during this time, so it's good to have my own things around me as consistency seems to be key. My same pillows, bedding and stuff is essential for that all important sleep. In practice I have two identical 'kits' one for home one for away. If I stay anywhere else it all goes with me.
I pace myself as much as I can, I sleep 2 hours most afternoons when I can. I take my meds at set times and always with food to stop unwanted side effects. When I'm at home creating my wares I start about 8am, work until 1, have lunch, crash out for 2 hours, get up, have tea and a snack and start again at 4ish until 8pm and dinner. When I'm away, on a non show day I sleep in the afternoons and pace myself, on a show day I usually have to be up by 6, work until at least 6 then eat and go straight to bed, the adrenaline seems to carry me through. After a show I usually sleep a whole day. As I have severe mobility problems I walk as little as possible to conserve energy when I'm at work, I use a scooter sometimes though I don't own one. I get driven in (or drive myself) to events and make full use of my blue badge, I save the walking practice and exercise regime for when I'm home and don't need to save every bit of energy for work. It seems relentless put like this but it's how I manage as normal a life as possible, where I still get out and about and most of all I can still work. Yes it's very hard at times but I love what I do and trying to make money is sometimes a good incentive!
There are times during a flare or if I catch the inevitable bug that this all goes pear-shaped. Then I am ruthless about cutting back. I pull out of events if I need to and rest as much as I can . I keep away from other people too, I don't need their cynicism or negative comments. I get others to help where I can. I can't spend time regretting what I miss, the negative vibes destroy so much. I've always been a glass half full person and I make myself keep on that way, even when it's tough. I can't have a pity party, it would never end after 22 years of Lyme so I don't even go there. I know my way is not most people's but it works for me.
It seems now that the patients are in possession of most knowledge about Lyme, painstakingly piecing together strands of research and ploughing through weighty documents in the medical journals. In 1992 no one knew much about Lyme save for a few enlightened souls in the USA and the NHS dismissed it out of hand.
So how do I cope day to day? I still run my business which takes me away from home between April and October some 4 days a week on average. I live mostly in my caravan during this time, so it's good to have my own things around me as consistency seems to be key. My same pillows, bedding and stuff is essential for that all important sleep. In practice I have two identical 'kits' one for home one for away. If I stay anywhere else it all goes with me.
I pace myself as much as I can, I sleep 2 hours most afternoons when I can. I take my meds at set times and always with food to stop unwanted side effects. When I'm at home creating my wares I start about 8am, work until 1, have lunch, crash out for 2 hours, get up, have tea and a snack and start again at 4ish until 8pm and dinner. When I'm away, on a non show day I sleep in the afternoons and pace myself, on a show day I usually have to be up by 6, work until at least 6 then eat and go straight to bed, the adrenaline seems to carry me through. After a show I usually sleep a whole day. As I have severe mobility problems I walk as little as possible to conserve energy when I'm at work, I use a scooter sometimes though I don't own one. I get driven in (or drive myself) to events and make full use of my blue badge, I save the walking practice and exercise regime for when I'm home and don't need to save every bit of energy for work. It seems relentless put like this but it's how I manage as normal a life as possible, where I still get out and about and most of all I can still work. Yes it's very hard at times but I love what I do and trying to make money is sometimes a good incentive!
There are times during a flare or if I catch the inevitable bug that this all goes pear-shaped. Then I am ruthless about cutting back. I pull out of events if I need to and rest as much as I can . I keep away from other people too, I don't need their cynicism or negative comments. I get others to help where I can. I can't spend time regretting what I miss, the negative vibes destroy so much. I've always been a glass half full person and I make myself keep on that way, even when it's tough. I can't have a pity party, it would never end after 22 years of Lyme so I don't even go there. I know my way is not most people's but it works for me.
It seems now that the patients are in possession of most knowledge about Lyme, painstakingly piecing together strands of research and ploughing through weighty documents in the medical journals. In 1992 no one knew much about Lyme save for a few enlightened souls in the USA and the NHS dismissed it out of hand.
So what has changed? Firstly I have, I'm much tougher and more ruthless and actually if it wasn't for Lyme I probably would not be so strong. The PHE had a conference last autumn at which they paid lip-service to changing the ways of the NHS though precious little seems to be happening so far. There are now several clinics around the world who can treat Lyme, but it is a costly business and demands lengthy stays abroad in a lot of cases. The main thing that has changed is the huge number of patients now coming forward and forming self help groups for support and the dissemination of accurate information. Patients lead the way in publicising this illness and making people aware of prevention. It would be nice in 2014 if this situation could be built on by the NHS and leading medics and so put a stop to the denials that the establishment seem so keen to perpetuate.
As I said at the beginning you never know what's around the corner with Lyme disease, but I keep hoping for better times, all of us sufferers do.
Thursday, November 14, 2013
Harm and Hippocrates
A month on and the Samento and Banderol have gone out of the window again. I was herxing so badly I was unable to do any work and this is my other busy period in the year. The 6 weeks between the end of October and the fist week in December is prime Christmas selling time and I have been inundated with orders. So I'm back on my normal regime of arthritis meds and pain killers.
I'm also worried about my increasing inability to walk more than about 20 yards and this is giving me real problems at shows when I have to stand for the best part of the day and where you rely on legs to get you about. Coupled with the fact I seem unable to carry anything at all, doing a show on my own is almost impossible unless I can park right next to the venue. The purchase of a mobility scooter is looking a lot more likely. WH does all the fetching and carrying for me but his arthritis is worse than ever this year, so bad in fact he's booked a GP appointment which is almost unheard of. Between us we are a right pair of old crocks!
I'm planning on doing the samento etc again after Christmas when I have 3 months of work purely at home. My Gp has agreed to refer me to the new National Lyme Clinic in Winchester, that was a couple of weeks ago and I have heard nothing since. A request for extra antihistamines for my ever increasing itchy rash was met with agreement to my face and total refusal when I tried to collect the prescription. I am also awaiting yet another dermatology appointment, but I'm not holding my breath. Meanwhile the antihistamines are an OTC drug so guess who's buying loads in Boots?
Once again the NHS conspires to confound those of us who really need their help, the chronically sick. The GMC website has a fascinating page on the duties of a doctor. It makes interesting reading. I thought that one of the tenets of the Hippocratic oath was do no harm, all my dealings with NHS medics seems to be at odds with this, harm is done by omission. It's about time someone started to take some notice.
Friday, October 18, 2013
Just a pile of old bones
I don't often eat pork, WH is allergic so it's rarely worth cooking any for one. Recently though, lured by the reduced section in Waitrose, WH succumbed to a pack of spare ribs, enough for one very large or 2 small portions. In turn I then succumbed to a really old fave of mine from the days when the famed Great American Disaster diner was open in Birmingham and saturday nights were often spent eating US style. That was at least 35 years ago but the memories still linger.
I've just finished my second plate of Spicy Barbecue Ribs and they were even better than the first lot yesterday. Here's the recipe.
100ml golden syrup
100ml tomato ketchup
100ml tomato puree
20ml worcester sauce
1 beef stock cube dissolved in 50 ml boiling water
Half teaspoon smoked paprika
Half teaspoon mustard powder (more if you like it really hot)
Few twists of black pepper
Pinch of salt
Mix all the ingredients except the ribs in a flat dish.
Add the ribs and cover with the sauce.
Cover the dish and refrigerate for at least 4 hours.
Bake covered with tin foil in a moderate oven for 3-4 hours.
If they look like they are drying out too quickly add some water to the sauce periodically.
Eat with a big smile :) jacket potatoes and sweetcorn. Yum
Tuesday, October 08, 2013
Tidal wave
Well it's been quite an eventful week one way or another but not stuff I really want to write about just now. I have been upping the Samento and Banderol though. After I could tolerate 10 drops each time for a couple of days, I started increasing the dose exponentially so I'm now up to 25 drops of each in the morning and 10 drops at night with no extra effect. I am starting to see little improvement too, certainly a lot of the brain fog is lifting and I have slightly more energy.
Tomorrow in London is the PHE Conference on Lyme disease. What started out looking like a seemingly boring presentation of the same old same old in relation to the new Lyme unit being set up in Hampshire, now begins to look slightly more promising with the input of Lady Mar, the LDA and real live patients. I wish I could have gone but it is just too far and too expensive by public transport and driving on my own out of the question. Several people from a group I belong to are going so I'm looking forward to their reports afterwards. PHE have promised some transcripts and videos afterwards but I admit I'm sceptical of some of their answers to questions about these provisions put to them in advance.
With various other pieces of research coming to light now and the recent statement regarding Lyme Disease and services in the HPA (Health Protection Agency) we can begin to see a tiny chink of light at the end of a very long tunnel. The tide is starting to turn for Lyme disease but I dont expect it to be even half way in in my lifetime.
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