Re Lyme's Disease

Hi All - I write this in shock because my cousin who lives in France with her partner and young family has just emailed to tell me that she's just been diagnosed with Lyme's Disease. She is an actress/ performer, lives in rural France and runs a circus with her partner and 2 young kids so this must be pretty devastating for her. She tells me she has only got it mildly now because her immuno suppressants have been fighting it off for about 12 years they think.

She's no recollection of having been bitten by a tic which is how this bacterial disease is spread and knowing about what I've been going through recently she wanted to tell me that it is categorised as a type of RA because it has almost the same characteristics exactly but unlike the ai RA, Lymes does not respond well to steroids or to imuno supressant drugs - but rather is treated by attempts to boost the immune system with antibiotics etc.

She is sounding very brave and saying its a good excuse to catnap frequently at least but probably is pretty distraught. I haven't had much contact with her since we were younger until recently (apart from a rash of family funerals) because they had no broadband until this year and .. well you know how it is with cousins etc?!

I feel so bad for her because she lost her mum and several aunties to breast cancer over the past decade and her dad (my uncle) has recently suffered a stroke. She told me this news because she read an email to her dad saying I was on steroids currently and wanted me to ask for a check in case I have Lymes rather than RA or some other form of inflammatory arthritis because the steroids would be counter-productive. But I'm not very well travelled and have been completely freaked out by the idea of tics for years and anyway the Scottish tic is only just starting to carry Lymes I'm told - so I think it's highly unlikely - but for her sake I just thought I'd see if anyone else here has any experience of Lyme's Disease I wonder?

Tilda T

10 Replies

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  • This has also been said about the symptoms being the same as fibromyalgia, lots of people panicked and then started soldiers off treatments , it cost them an absolute bloody fortune in "special" antibiotics you can only get from off the Internet or pay privately for them so please don't panic , it could cost you a fortune.

    Treatment on the NHS is said to be not really good enough and you need to get it privately. , Be careful. As it might not effect everyone apart from their wallets

    please don't panic Tilda, there is no proof of what lunes disease is spry from the tick.

  • Lol I don't know where the soldiers came from, I have predictive writing on lol. Should say everyone.

  • Thanks Philip but its for my cousin I'm asking really not for me - and she's not a panicky type and lives in rural France so it's really just info gathering I'm trying to do so I can be supportive to her. TT

    Ps I thought the soldiers made some sense actually as they travel a lot and might get tics?

  • Tell her to google it now she has broadband. It will tell her everything she needs to know. I'm sorry to hear her news,its not nice for anyone nor your family.

    Take care. Sylvia.xx

  • She may have been bitten by a tick without realising it. The little beggars once full of blood then drop off and wait for the next victim. Does she recall any itchy spots in the past?. Often they attach themselves to your legs when going through long grass etc. Also if there are deer in the area, they also carry ticks as well. anyone walking in areas where deer are, should make sure trousers are tucked into socks or wear boots to knee high with trousers tucked in.

    We have a lot of ticks in this area and they are worse some years than others. You get sheep ticks as well. The dogs do get them from time to time but we have a special little gadget to hook them off and I then stamp on them to kill them. Treat the area where the bite was with antiseptic and if you get any of the symptoms, see a doctor as quickly as possible.

    LavendarLady x

  • I think from the tone of her email she knows a lot about it despite only having been diagnosed ten days ago - she's very intelligent. I was just so startled and wanted to know if anyone on this site also had Lyme or experience of it so I could better understand what she is going through?

    But I have been tic aware and Lyme aware too for a while because when we ran a b&b we had an elderly American guest with this illness. It did seem to be very like RA looking back as he had the same systemic flu-like tiredness and lots of joint and muscle pain also. Imagine having both? How would it be treated? My cousin tells me the exact opposite of RA in terms of treatment - boosting immune system with anti-biotics rather than supressing it? That would be a nightmare for patient and doctor I imagine as you wouldn't know which way to go medically. Ah well on that worrying note I must go and serve up dinner!

    TT

  • I have a friend who had Lyme's disease (used to work in forestry so we all knew to watch out for it). Hadn't really thought about it before but it was a bit like RA - except that for her the biggest symptom was a crushing fatigue and the aches & pains were secondary and not as hot & angry as RA joints from how she described it. Took her quite a while to recover, but recover she did. Can you imagine getting both! Urg. I'm staying well clear of likely tic spots. Polly

  • I don't often reply on this site because I get really fed up of passwords and things. When all the students are here my internet connection goes up the spout. The air must be buzzing with wireless! Don't really understand physics.

    ANd I can imagine where you're coming from about your cousin's Lyme disease. She sounds fun, running a circus, so as you say disability/ chronic illness must hit her hard. It does appear odd, to have the opposite type of treatment to RA, but with similar symptoms.

    It took me nearly 10 mins to get in to first the internet, then this site, so I'll just send you lots of warm wishes. Plockton was wonderful

    Cathie XX

  • Hi Tilda

    Sorry to hear about your cousin. You may already have found this information but, just in case you haven't, the ARUK produce a leaflet on Lyme Arthritis and it may be of interest to you. arthritisresearchuk.org/art...

    Best wishes

    Lorraine

  • Thanks Lorraine that is really helpful - I will pass the link on to her and read it myself also.

    It seems to be the month for people to be coming down with awful things - I've had three emails today from friends with terrible newly diagnosed conditions or relatives with cancer - and all seem to feel I'm the one to counsel them through it - maybe they think I've suffered enough lately to empathise or maybe they are trying to show me that there are worse things than RA to cope with?

    Whatever I think I might have to go into hibernation from email next week when I'm back off the Prednisolone - because I feel a flare of compassion fatigue descending - oh dear not really but sure you've all had these kind of weeks sometimes?! TT

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