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.

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.

500g pork ribs
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

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.

Herxing like Hell

Been back on the good old Samento and Banderol (herbal antibiotics) for a week now. I've got up to 5 drops a day of each and I'm permanently nauseous. The treatment protocol suggested by Dr Marty Ross a leading authority in Lyme treatment suggests starting at 10 drops of each TWICE a day and I can't even tolerate one quarter of this.  Presumably all this is a giant herx which rather points to there being a lot of Borrelia coursing round my system again.

I've started now as I have 5 weeks between craft shows so I don't have to work outside the house, however I would like to do some work indoors, out of the last 7 days I have achieved the equivalent about 2 days, not good. The rest of the time I am laid low with a permanent headache, fever, nausea, a rash, muscle pain and palpitations. Not good.

I'm going to persevere though as I'm sure if I can zap a few more of those pesky spirochaetes my overall health should improve and maybe my legs will start to work normally again. At the moment they are firmly switched off, the brain is willing but it's like the power supply just died. I've got an appointment with the NHS rheumatologist in a couple of weeks, wonder what he will have to say about the old legs.  Usually its  a case of 'oh well try and get some exercise,' he hasn't quite grasped that I am trying and I fail every time! Maybe I should start talking nerve damage and see what he suggests then. Meanwhile I'm just hoping I have the oomph to actually get to the appointment.

Cuddles day

If it's Monday it must be cuddles day, not for me, for one of my grey babies, Misty, the smaller of my twin cats. 

Sunday nights I take a weekly dose of Methotrexate along with whatever food I fancy will keep the dreaded nausea at bay. Even if I have just eaten, I must eat again 'on top' of the pills in order to keep them down and to allow me to take the other seven I take each night. Taking before or even with a meal is usually too early in the evening and I get the side effects before I'm asleep. So years of trying other times/combinations have lead to this current practice. The usual snack of choice is biscuit based, gingery or maybe cheesey. Occasionally actual cheese does it, but anything 'sensible', fruity, veggy, or runny is a no no. It has to be dryish, bland and filling. The food police are having a fit just reading this.

There then follows a shortish night of frequent trips to the bathroom, night sweats, thirst, headaches and general feverishness. By the time I have started to sleep properly, around 5.45am, the alarm goes off and WH has to get ready for work.  I try to go back to sleep and frequently fail. I have to take more pills at 6am anyway and Mondays I have the added bonus of a Folic Acid pill too. I have to eat again then, usually breakfast but for those times I really can't eat anything 'proper' it's more biscuits. I tried and failed to get those pills down unaccompanied too but the ensuing nausea was worse than ever.  An hour after that lot and by the time I've dressed, tidied, emptied the dishwasher and pandered to the cats, I'm knackered and ready for bed again.  

This all conspires to make Mondays a waste of time for me. Not so for the smaller of my twin grey cats. He's normally a pain in the bedroom at night, taps me when he's hungry, has a major wash next to my head when I'm fast asleep and has a thing about doors, an open door must be shut, a shut door is only there to be opened. On Mondays however it's as if he knows. As soon as I go near the bed he's there on the corner, getting ready to snuggle in. When I pull up the duvet he shifts into position against my leg and there he stays, good as gold. I get the occasional glance to see if I'm likely to move but for as long as I'm there, he's there. No tapping, no washing, just extremely good behaviour. Of course I might reach down and give him a quick cuddle but he doesn't expect over much and certainly doesn't pester me for more. In fact, the perfectly behaved cat. His brother Nelson, meanwhile is usually outside if the weather's good, if it's not he'll be in his cardboard box in the living room (but that's a whole other story).

My question is simple. If Misty can behave for a few hours each Monday then why on earth can't he do it the for rest of the flipping week?

Welcome back to the madhouse

Clipart by lineartestpilot: http://clipartof.com/1153537

It's been three years since I posted here and I have decided during the hiatus from work which is autumn I might as well revisit this blog.

My life has changed much since I was last here, one of the biggest things is that Lyme disease is now on the top of a lot of people's agendas. It's still vastly misunderstood by the NHS and it's still an uphill battle to get proper, successful treatment but the sad fact is that more and people are affected by it and the wonders of cyberspace have joined a lot of sufferers together so that they are not so alone as they were in the past. I joined a support group online and see that the relative newbies to this awful disease are as bewildered and angry as I was all those years ago when I was first diagnosed. I thought that by resurrecting this blog some of them would be able to go back and see posts I made when I was undergoing intensive treatment and also from before that time to see how it was for me. 

If I can help just one person then I would be very happy.  On a purely selfish note it also saves me having to keep repeating the story, I can just point interested people here.

On a lighter note I won't just be posting about illness, although you have to realise that life with Lyme is one big balancing act underpinning my entire life and I frequently topple over. You can expect notes on my wider interests from my business to my cats via gardens, cooking and my other passions.

It's good to be back.