Tuesday, 6 November 2012

Feeling good and Lyme Protest starts

Woooooo!!!!!! I just had a whole day without any symptoms at all! Whizzing on up that rollercoaster with the help of my little antibiotic-fuelled jet pack. Marvellous. I even did loads of jobs (including a 3.5 km beach walk) and was still ok- no thunderbirds legs or anything. So chuffed, and the last few days have been fine as well, little niggles and bit of insomnia and  muscle twitching and slightly thunderbirdy walking, but mostly fine.

Got the letters from my Neurology and Cardiology appointments back. Not as bad as they could have been. 

The echocardiogram showed mildly impaired LV systolic contraction, a mildly thickened atrial valve, hypokinesis of mid to apical anterior wall, and mild hypokinesis of apical anteroseptum. So, I'm not a doctor, obviously, but the repeated 'mild' in there tells me it's not too serious! My palpitations and breathlessness on exertion have mostly stopped now, so I'm not worried at all. I didn't get chance to discuss with the GP. To be honest, I ration my visits with her so that I don't appear like a maniac hypochondriac. I've got an asthmatic cough following a cold at the minute, and I guess I could do with an inhaler, but I'm reluctant to go the GP and add to my already bulging file of notes.

The neurologist- well - GRRRRR!!!!!!. She stopped short of actually coming out and saying 'Functional', but she did say "It is very difficult to explain this lady's gait abnormality anatomically. It is unusual. It does not appear secondary to proximal weakness, peripheral neuropathy or ataxia and may not have a neurological basis. I have explained to her that unfortunately we do not always find a neurological cause for abnormal gait and that may be the case in this instance".

Right- so on the day I saw her, I had had no antibiotics for 3 days and was as weak-legged as a drunken kitten. I had a very weak left leg, which I could barely lift from the bed and it fatigued so quickly that she had to support my leg to do the reflexes. I could only just push against her on that side. I really struggled to do the heel down the shin test, especially with the left leg. I couldn't touch my finger to my nose with my eyes closed on the left side, I missed by more than an inch. Did she mention ANY of this in her letter? NO! she even denied proximal weakness and ataxia- which I was showing clear signs of!!!!!

She is referring me for nerve conduction tests. I doubt they will show anything, they didn't last time and my USA Lyme doc considers most nerve conduction tests to be too crude. Oh, and she called it "Lyme's Disease" twice in the letter. I can live with typos, but getting the name of the disease wrong is a bit much.

In other news, I made a crazy spur of the moment decision and offered to be UK co-ordinator for a Lyme protest to be held in May next year. The idea is that countries across the world join together on one day and each hold a protest against the lack of diagnosis, recognition and treatment of Lyme disease. I think it's a really good idea- the whole world is affected by the flawed IDSA guidelines- most countries seem to take their lead from this work of fiction, so we are all facing similar denialist attitudes towards chronic Lyme. The idea that Lyme and infected ticks and hosts respect arbitrary political boundaries is ridiculous too, yet people are repeatedly told "we don't have Lyme in such and such an area/country, so you can't have Lyme". What a crock of excrement. er-- birds fly you know! Mice, voles etc move about, even mammals can migrate and move long distances.  As an ex-ecologist/entomologist, I would be willing to bet a large sum of money that where there is suitable tick habitat, sufficient hosts, suitable temperatures for development of the ticks and pathogens, and where people come into contact with the ticks, there will be Lyme and it's little co-infection pals.

So yeah, lets all stand up (or sit down if you can't stand!) and be noticed. Recently there was a protest outside the IDSA conference in San Diego. It seemed a real success, alerting IDSA doctors to the controversy, see .San diego protest report.

I think a properly conducted, sensible (but visible and frank) protest in the UK, on the same day as the 15 other countries who have signed up, would be good publicity. I will do my best to ensure that the messages we put out are not too outlandish (please, no biowarfare references- I know people feel strongly about this, but I think the majority of Lyme sufferers see it as a distraction from the main issues). I don't mind references to diseases that Lyme has been linked to, as long as the links are substantiated by some scientific evidence. We need to make sure we have credibility in the eyes of the sceptical and conservative medical professionals/policy makers/politicians.

If you want to find out more, please see our facebook page:

Worldwide Lyme Protest- UK.

Get involved, come along or send someone in your place. If you are too sick to come in person, send us a message and we will put it on a flag for you. We hope to set up a website soon.We are not sure where it will be yet, but we hope it will be a great success.

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