Does any one have any thoughts on the recent radio 4 item that said it is now thought that a huge percentage of people diagnosed with me/cfs probably have Lymes disease instead?
could u tell me the name of the radio 4 program, so as i can listen again
with thanks Caitlin
interesting, will also listen to this
Thanks, i'lll look for a link to the show. Can you tell us more about it ?
Ing Chrissy, I can't believe it! I have just been on a website called Lyme disease action symptoms and they list around 75 symptoms of which I have around 60 of them. This makes so much more sense now. Thanks for this info I am really shocked but very interested to see what further findings are made xx
Someone suggested it to me but I didn't take it onboard at the time. Thanks for posting this Chrissy! 
I was originally treated for Lyme Disease after my health deteriorated quickly over a couple of weeks and my doctor put me on 2 seperate courses of antibiotics. I was bitten by something but didn't pull a tick out, what really makes me remember the bite is that the area around the bite had swollen up to the size of a saucer. At one point I was unable to walk and I thought I was going to end up in a wheelchair. My Dad is frequently treated for Lyme Disease as he's always outdoors in the heather completing surveys for insects, etc in the Scottish Highlands and has always told us to look out for the tell tale signs. My doctor has tested me 3 times now for Lyme Disease and I have tested negative for each and every one even though all my symptoms point to Lyme. Unfortunately the NHS test for Lyme Disease is not very reliable and with Lyme being such a complex disease with many, many co-infections that trying to get anyone on the NHS to even consider this is almost imposible. I've now been off work for 6 months and both my doctor and Infectious Disease consultant have now diagnosed me with CFS. I have found the information on Lyme Disease UK Discussion Group on Facebook very helpful and the people there are lovely and extremely knowledgeable - you really need to have some sort of medical qualification to understand everything but they are great at putting it into normal english to understand!! It's very scary to think how many people could actually be suffering with Lyme Disease and that our medical professionals and those here to help us fail to recognise this as a disease.
Are you still receiving treatment for lyme ? Are they still treating you for lyme ? I have been diagnosed with CFS but i was in the highlands about 6 weeks prior to becoming unwell, i was doing a triathlon. I have had numerous lyme tests, all negative. I never had a rash or recall being bit. My GP did prescribe me with 3 weeks doxycycline but i felt no improvment.
Hi David, not receiving any treatment for Lyme. How long have you been ill for? Originally they gave me a 10 day course of doxy then a 2 week course. The infectious disease consultant's first words to me were "you don't have Lyme disease". I was a pretty active person cycling a couple of times a week and walking about 5km each day in my lunch hour with lots of gardening at home in any spare time. My health record at work was on average 1 day off a year and to suddenly go to this really makes me believe there is something else wrong. I just feel that a diagnosis of CFS is a bit of an easy thing for the NHS to give me.
I've been ill for 14 months now. Had to quit my job, life has fallen to pieces quite frankly. Prior to my CFS which was initially post viral, i was NEVER sick in my 34 years. Went to the gym 5 days week, swam regularly, ate really healthilly etc I'm not happy with my CFS diagnosis. I wrote to the infectious disease consultant to explain how i am getting worse, i brought up lyme again given symptoms match and theoyl two things i did differently in 2013 was activyt holiday in Bulgarian muntains and triathlon in the highlands., what he did was wrote back to say i should get a second opinion and discuss possible 'theraputic options.' So i am hopeful something can come of it. My iniital appointment was rushed as i was late due to traffic, maybe he missed something. I have spontaneous conjunctvitis, extreme fatigue, some days worse than others, housebound 90% of teh day. As you say to go from triathlete to this at 34 years old is quite a turn around. I know valacyclovir is also a treatment option in relation to PVF/CFS. You might want to write to I.D consultant like i did.
For you all the program was an episode of You and Yours aired on Thursday 22nd January 2015. It is a lunch time program at 12.15 until 1pm. The section on this is around 5 minutes long. It's available for 30 days from date aired.
Yes the program made the point about how unreliable current nhs tests are.
I'm not sure this actually relates to me, surely I would know if I've ever had a tick bite is my feeling (I recently had to get one taken off the dog!) but I suppose it's possible. But it was the huge percentage of mis diagnosis claimed on the program that got my attention, I forget now exactly what it was but surely it must help SOME of you out there.
Lymes was one of the first things my doc tested for prior to my diagnosis. Definitely worth asking for the blood test to rule it out xx
I'd be very surprised if this were true. It would be amazing if Radio 4 were reporting something like this considering the evidence we have that it is not true and that those claiming Lymes disease explain a large percentage of ME/CFS patient's illness are really just using unrelaible testing that classes a large percentage of all people as having Lymes disease.
i remember this broadcast - Winifred Robinson - You and Yours. i can't remember the details, but what i do remmeber, is noting that whatever she said was already ''old'' news within the ME/CFS/Lyme community. it centered around the lack of reliability of the Lyme tests in the UK which we all already know. think, it also commented on the overlap of symptoms between CFS/ME & there being no proper ''differential'' diagnostic test to seperate these 2.
also, last year, ''The Wright Stuff' ( not sure if that's the proper title) did a section on ME/CFS. they had a spokes person from Action for ME or the ME Association (can't remember which) on. the spokes person was USELESS. didn't explain anything. it was clear she had never experienced the condition, coz if she had, she'd have explained how debilitating the condition is.
Sorry then. The program was only on the week before last and it was news to ME that 'some experts think 9 out 10 people diagnosed with me/cfs actually have Lyme disease instead'. (I listened again.) I simply thought it was worth a discussion and if it benefited even 1 person it was worth it. It has certainly never been suggested to me as a possibility or a test worth having.
hi chrissy. of course this IS news ''worthy''. thank u for bringing attention to it. it's just my occasional moments of cynicism getting the better of me. i shall ''listen again'' literally. i wonder where they pull the stats from? apparently, according to some schools of thought, that it's possible to have been bitten by a tick without being aware of it. so it's possible that the stats (9 out of 10) could be right.
best wishes
Caitlin
That's ok, you're so right to be cynical. I wasn't assuming it was hard fact or the answer to all our prayers or anything like that but it made me prick up my ears and I wondered what people thought that's all. I'm not new to me/cfs (about 10 years) but I AM new on here so I apologise if I'm a bit old hat to others of you. I DID take time to read lots of current threads before I ventured any comment of my own but there are LOADS of them and I didn't actually find anything around this. Probably there is if I keep going long enough ..... 😊