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Lyme's and ms

Hi everyone, I just wondered if anyone has had experience of getting diagnosed with ms and it is Lyme’s disease.Because I was bitten a while ago and it was Lyme’s.And I also remember getting bitten years ago and got infected unsure if it was Lyme’s that time but had antibiotics.I have been diagnosed with ms,but have read up a lot about how Lyme’s symptons can be similar to ms.And how would you find out. Anyone been in a similar situation as I know sometimes the test you have for Lyme’s sometimes comes back negative.Can anyone help or advise. Thanks

l thought l would ‘bump’ your question up - there are a few diseases that mimic ms. Lymes being one - and Hughes Syndrome another. Also, a very low vitamin b12 count. Just google ‘could it be b12’ an epidemic of misdiagnosis. l have a friend with lots of problems and she has now been told she has Fybromylgia. When l googled it l was astounded at the amount of vitamin d3 they recommend using to start treating it. l know it is another auto-immune disease and she does have psoriasis/rheumatoid arthritis/cancer which are all in the auto-immune caterogy.

Someone might answer who has been in the same boat as you.

I had a consultation with the neuro on Monday and I mentioned lymes disease. In 2009 I had been to Scotland and on the return noticed a red spot with a ring around it. Went to the doctors who referred me to Dermytologist who scratched his head and sent me away. This ring moved all the way down my calf until it just paled and disappeared. I had spoke to the GP about it a couple of weeks ago and she says that she would have expected the markers from my bloods to be raised if I had this in my system. I am waiting diagnosis… I also mentioned it to the consultant who confirmed that I had been tested for lymes and this was negative. So if I was worried about it I would probably go back to GP. She may be able to look at recent bloods and look at those markers, or Order some more bloods. Yvette x

This interests me because I have also been tested for Lyme Disease. Tick bite on lower leg years ago (shorts, walking dog, long grass…) followed by allergic reaction to amoxycillin. I was feeling so rough didn’t remind locum GP about allergy to penicillin and was too ill to complete course. Will they have worked enough to clear it? Blood test for Lyme negative but have read before about false negatives…? Any thoughts/advice? xx

the truth is that most Lyme tests are really basic (ELISA and western blot), with about 30% accuracy. the bacteria may hide somewhere in your cells etc and be undetectable in these basic tests. PCR is much better, though in case of chronic Lyme disease, the result may be false negative as well. there are a few more, I’m pretty sure they aren’t available on the NHS though and you’d have to pay for them.

in my case chronic Lyme disease was really likely and I had about 30 tests for different infections/bacteria and half of them were tests for Lyme. it was really expensive, but at least I know that it’s MS not Lyme

xx

I had lyme test recently - they had to send it off to a special lab etc - no-one mentioned it could be false negative but the results sheet says that if -recent- infection is possible you should retest after 2 months

also if you took steroids, you’d have to wait at least two months. basicaly, one test doesn’t exclude/confirm Lyme disease, but when you have a few with similar results, it’s easier to make reasonable conclusions (that’s what I’ve been said)

[quote=“spacejacket”]

l thought l would ‘bump’ your question up - there are a few diseases that mimic ms. Lymes being one - and Hughes Syndrome another. Also, a very low vitamin b12 count. Just google ‘could it be b12’ an epidemic of misdiagnosis. l have a friend with lots of problems and she has now been told she has Fybromylgia. When l googled it l was astounded at the amount of vitamin d3 they recommend using to start treating it. l know it is another auto-immune disease and she does have psoriasis/rheumatoid arthritis/cancer which are all in the auto-immune caterogy.

Someone might answer who has been in the same boat as you.

[/quote] this releys on MS being autoimmune; no proof is or is not.

Hello, I too was very worried about lymes. Apparently it hides itself very well in the body and it the nhs test are not that accurate - mind you when you challenge gps/specialists in neurology/tropical disease, they claim the tests are good and NOT to spend lots sending blood samples to the US/Germany. I believe the nhs lab is based in Southampton. I’ve had my bloods tested 3 x there now. I’ve asked about a Hospital called Breakspear and amoungst the nhs crew this private hospital is well known for ripping of people and charging in the region of £20,000 to dish out very strong antibiotics to cure lymes. I’ve dug around and apparently sometimes the tests show false positives and alot of people think they have lymes when in fact they don’t! Apparently the drugs can cause sooo much damage to the body so one really has to weigh up whether the long dosage is a good thing. The problem is in the UK we don’t really have a so called literate lymes specialist. they only really exist abroad. V hard to know what to do really and when to know when to stop testing and accept its not lymes - hard i know when no tests - albeit mris etc are showing negative. My endo raised an interesting point and said it would often show on an mri aswell which is interesting. perhaps run that past your neuro to confirm???

Hello, I too was very worried about lymes. Apparently it hides itself very well in the body and it the nhs test are not that accurate - mind you when you challenge gps/specialists in neurology/tropical disease, they claim the tests are good and NOT to spend lots sending blood samples to the US/Germany. I believe the nhs lab is based in Southampton. I’ve had my bloods tested 3 x there now. I’ve asked about a Hospital called Breakspear and amoungst the nhs crew this private hospital is well known for ripping of people and charging in the region of £20,000 to dish out very strong antibiotics to cure lymes. I’ve dug around and apparently sometimes the tests show false positives and alot of people think they have lymes when in fact they don’t! Apparently the drugs can cause sooo much damage to the body so one really has to weigh up whether the long dosage is a good thing. The problem is in the UK we don’t really have a so called literate lymes specialist. they only really exist abroad. V hard to know what to do really and when to know when to stop testing and accept its not lymes - hard i know when no tests - albeit mris etc are showing negative. My endo raised an interesting point and said it would often show on an mri aswell which is interesting. perhaps run that past your neuro to confirm???

Hello, I too was very worried about lymes. Apparently it hides itself very well in the body and it the nhs test are not that accurate - mind you when you challenge gps/specialists in neurology/tropical disease, they claim the tests are good and NOT to spend lots sending blood samples to the US/Germany. I believe the nhs lab is based in Southampton. I’ve had my bloods tested 3 x there now. I’ve asked about a Hospital called Breakspear and amoungst the nhs crew this private hospital is well known for ripping of people and charging in the region of £20,000 to dish out very strong antibiotics to cure lymes. I’ve dug around and apparently sometimes the tests show false positives and alot of people think they have lymes when in fact they don’t! Apparently the drugs can cause sooo much damage to the body so one really has to weigh up whether the long dosage is a good thing. The problem is in the UK we don’t really have a so called literate lymes specialist. they only really exist abroad. V hard to know what to do really and when to know when to stop testing and accept its not lymes - hard i know when no tests - albeit mris etc are showing negative. My endo raised an interesting point and said it would often show on an mri aswell which is interesting. perhaps run that past your neuro to confirm???

Hello, I too was very worried about lymes. Apparently it hides itself very well in the body and it the nhs test are not that accurate - mind you when you challenge gps/specialists in neurology/tropical disease, they claim the tests are good and NOT to spend lots sending blood samples to the US/Germany. I believe the nhs lab is based in Southampton. I’ve had my bloods tested 3 x there now. I’ve asked about a Hospital called Breakspear and amoungst the nhs crew this private hospital is well known for ripping of people and charging in the region of £20,000 to dish out very strong antibiotics to cure lymes. I’ve dug around and apparently sometimes the tests show false positives and alot of people think they have lymes when in fact they don’t! Apparently the drugs can cause sooo much damage to the body so one really has to weigh up whether the long dosage is a good thing. The problem is in the UK we don’t really have a so called literate lymes specialist. they only really exist abroad. V hard to know what to do really and when to know when to stop testing and accept its not lymes - hard i know when no tests - albeit mris etc are showing negative. My endo raised an interesting point and said it would often show on an mri aswell which is interesting. perhaps run that past your neuro to confirm???