Lymes test uk?

[Fuzzyhead]

Does anyone know where you can get a reliable lymes disease test in the uk?
I know a lot of people used dr Andrew wright in Bolton but he has been struck off I think.
I am seeing an immunologist next month and going to ask to be tested but don't know if he will.

 

[maryb]

Dr A wri-ght wasn't struck off he had restrictions put on his practice.

 

[Fuzzyhead]

Oh thanks maryb, I knew I heard something had happened. Can you not see him now?

 

[Sushi]

Does anyone know where you can get a reliable lymes disease test in the uk?
I know a lot of people used dr Andrew wright in Bolton but he has been struck off I think.
I am seeing an immunologist next month and going to ask to be tested but don't know if he will.

You can send samples to Redlabs in Belgium or Infectolab in Germany--but of course you would have to pay a fair amount for the tests.

Sushi

 

[snowathlete]

Have you had an NHS test? Although its reliability is questionable, it's probably worth starting there. My first GP said no but the second I saw said yes to it. Came back negative. Since then iveseen De Meirleir in Belgium and now waiting for the Redlabs test result, which tests more species of Borrelia.

 

[Fuzzyhead]

No I haven't had the nhs test. I have m.e for 12 yrs but don't think I have ever been tested, I was going to ask the immunologist if he will. My gp will probably say no, you know what they are like.
So have you travelled to belgium?

 

[Sushi]

Fuzzyhead

Hi,

I have traveled to Belgium from the States (I am there now) and snowathlete traveled from the UK.

Best wishes,
Sushi

 

[Fuzzyhead]

It's too far to travel for a test if you don't know for sure if you have it that's why I was hoping somewhere in the uk did it.
It's just a stab in the dark really because I worked as a post woman when I got ill and I delivered to rural areas but I can't remember a bullseye rash.

 

[vamah]

It's too far to travel for a test if you don't know for sure if you have it that's why I was hoping somewhere in the uk did it.
It's just a stab in the dark really because I worked as a post woman when I got ill and I delivered to rural areas but I can't remember a bullseye rash.

Less that half of people infected with lyme get that rash, FYI. You might ask for a CD-57 test. It tends to be low in people with lyme (although mine is low and I don't have lyme). Then decide, based on that result, if you think an expensive lyme test is worthwhile.

 

[Sushi]

It's too far to travel for a test if you don't know for sure if you have it that's why I was hoping somewhere in the uk did it.
It's just a stab in the dark really because I worked as a post woman when I got ill and I delivered to rural areas but I can't remember a bullseye rash.

Yes indeedy! Too far to travel just for a test. I made the trip to see the doctor and this is just one of the many tests he ordered.

Sushi

 

[Fuzzyhead]

I have wrote all the tests down to see what he says.
It's so frustrating trying to find out the cause of why were ill and having to pay huge amounts of money trying to get better.

 

[vamah]

I have wrote all the tests down to see what he says.
It's so frustrating trying to find out the cause of why were ill and having to pay huge amounts of money trying to get better.

I hear you. Good luck. Try and print out lots of documentation from medical journals, etc. before you go. I find that when I go in with a stack of paper from reputable sources it's diffucult for them to just write me off as a psych case. Angry+smart+well prepared is a lethal combination. I am fortunate to have a very smart friend with lyme (my "doctor without portfolio" ) who has been indispensible to me. Message me if you want me to send you some citations for lyme or HHV-6. And let me know how it goes. I am just now starting to feel I am making progress, but it took a lot of failures and doctor shopping (can you do that in the UK?) and money.

 

[Fuzzyhead]

It's just so difficult when your not certain yourself of the cause isn't it, it's a needle in a haystack situation.
I had glandular fever when I was 18, I am 43 now but I have read lots of people with m.e/cfs had this at some point in there life before the m.e.
I am hoping the immunologist might do bloods for other things that I have never been tested before. Our gps usually jus Do the basics like liver function test, thyroid, sugar, hormones, lupus but that's about it. I have had immunology tests and the only one came Back high was rheumatoid factor but I seen a rheumatologist who said I didn't have rheumatoid arthritis. Also I tested positive for gastric parietal antibodies last year but I got tested again the other week and it was negative. What do you go by and which tests do you believe, it's all too complicated isn't it.

 

[vamah]

it's all too complicated isn't it.

Yes, it is. It is easy to get overwhelmed. Especially when brain fog, confusion, depression are part of your symptoms. If you want to look at infectious disease, I would just do one test at a time, starting with what is most likely, least expensive, whatever. If you get a positive, treat that and see what happens. You need to have patience (something that is difficult for me) because 1) if you try and treat multiple things at once you don't know what is really helping if you do see improvement and 2) You have to stick the treatment out because it can take months or years to see results. I KNOW this is difficult to hear but it is important not to give up on a treatment (unless you are having horrible side effects, of course) just because you don't see results in the first few months. If you have an infectious disease, you have had it for a LONG time. It will take a long time to resolve.

 

[Fuzzyhead]

I have often wondered about the glandular fever being a cause because it belongs to the Epstein bar virus and mono doesn't it?
I wouldn't know where to start following this up or I might just mention it to the immunologist next month.

 

[vamah]

I have often wondered about the glandular fever being a cause because it belongs to the Epstein bar virus and mono doesn't it?
I wouldn't know where to start following this up or I might just mention it to the immunologist next month.

I had not heard of glandular fever, but if it is related to Epstein Barr, then that is the first thing I would test for. That is also a fairly inexpensive test, so win-win . Be sure to ask them to test for early antigen (EA). NO ONE should test positive for that simply from an infection in the past. It means that the virus is currently having a party in your body.

 

[snowathlete]

I had not heard of glandular fever, but if it is related to Epstein Barr, then that is the first thing I would test for. That is also a fairly inexpensive test, so win-win . Be sure to ask them to test for early antigen (EA). NO ONE should test positive for that simply from an infection in the past. It means that the virus is currently having a party in your body.

glandular fever is another term for mononucleosis/mono.

It's too far to travel for a test if you don't know for sure if you have it that's why I was hoping somewhere in the uk did it.
It's just a stab in the dark really because I worked as a post woman when I got ill and I delivered to rural areas but I can't remember a bullseye rash.

Your GP will ask you if you have had a bullseye rash and will tend to dismiss it if you havent, but you cannot rely on such a rash occuring as it frequently does not. There are plenty of papers on this. Rash not being present is not enough to rule it out, so keep hastling them till they run the test. It is a fairly cheap NHS test that they can run easily. Everyone with ME/CFS should have at least the standard test in my opinion. Point out that you get nothing on the NHS for your illness, and all you're asking for is a simple, cheap test to rule out a disease with similar symptomolgy that is treatable. Hardly asking a lot are you.

 

[Mog]

You can get Lyme testing done privately at Breakspear Clinic, Hertfordshire. That's the only place I know in the UK. The one I had done was the Igenex Western Blot, which is sent to the US for testing. They will do other Lyme tests too, including the Elisa (but I don't think it's so accuate - others can correct me if I'm wrong). But it's expensive of course, and you'll probably have to pay for a doctor's appointment, and they'll no doubt try to sell you other tests too.
I had a couple of Lyme tests done previously on the NHS which were negative (although I didn't actually see the details of them) - one was fairly early on in my illness, and the other was more recently. The Western Blot wasn't conclusive that I had Lyme but showed enough evidence of it that it could be a possibility with me. I am just working out what to do next, which I think will be getting further tests done for it and co-infections at InfectoLabs in Germany.

"It's so frustrating trying to find out the cause of why were ill and having to pay huge amounts of money trying to get better."
I completely agree - it's all horribly confusing and completely overwhelms me much of the time

 

[maryb]

I would ask for comprehensive viral panel testing, but on the NHS?? If your illness started with a virus then its useful but NICE guidance bars GP's from viral testing, maybe consultants have more flexibility.

 

[Fuzzyhead]

Thanks maryb. What's viral panel testing? I know I have had some immunology bloods done.