confused about tests for Lyme. Help please?

[penders]

Can anyone recommend a good test for Lymes Disease? I live in the UK and have had 3 negative NHS tests over the last 15yrs. However, I know the NHS test is unreliable and probably more so in my case as I got ill in Asia so if I do have Lymes it will be a different strain (I assume). Dr Wright in Bolton UK did his own microscopy tests until he was banned from doing them and I was positive on that for Lymes and Babesia but I think most of his patients came up positive on his test. But he sent my blood to some doc in the uS who agreed with the positive result. But a friend who also came up negative on the NHS but positive on Dr Ws microscopy test had IV antibiotics and was no better for it so I put my head in the sand. I was going to have the ISpot test done but was told they tend to have a lot of false positives!!! it's all very confusing and stressful. Does anyone know which test is the most reliable? many thanks in advance for any replies. Wendy

 

[penders]

I'm confused by all the tests. What test would forum users consider to be the most effective? the NHS test in the uK is apparently rubbish. thanks

 

[Ema]

Infectolab Elispot LTT test

http://www.drmyhill.co.uk/wiki/Lyme_Disease_and_other_Co-infections

IgeneX Western Blot IgG/IgM

 

[minkeygirl]

I was going to see there are many threads about this but the best source is @Ema.

also posting the same question in 2 separate areas just leads to confusion for those of us easy confused. and could compromise the information you get

as @Sushi One place is enough.

 

[duncan]

I also frequently recommend the C6.

 

[penders]

I'm sorry if I confused anyone.I am not very tech literate and thought the first post did not work as I could not see it after posting. It was not my intention to annoy or confuse anyone. I don't know what @Ema means or C6 but thank you for bothering to reply

 

[Esther12]

I'm afraid that there is a lot of controversy in this area.

We're currently on the tenth page of this weeks discussion on this matter: http://forums.phoenixrising.me/inde...o-treat-empirically-for-lyme-good-idea.38866/

 

[msf]

Well, when you say we, you mean you and everyone else.

 

[Sushi]

I'm sorry if I confused anyone.I am not very tech literate and thought the first post did not work as I could not see it after posting.

You will not see your own posts under New Posts as they are not new to you--but you will see them under Recent Posts, and everyone else will see them under New Posts.

 

[charles shepherd]

There is clearly a lot of controversy surrounding Lyme disease and Lyme disease testing

My advice to anyone in the UK who suspects that they might have Lyme Disease is to first ask to be referred to an NHS infectious diseases specialist and to make sure that the testing follows guidance issued by the HPA:

https://www.gov.uk/lyme-borreliosis-service

I would advise considerable caution before heading off to some parts of the private medical sector for both investigation and treatment of Lyme disease

Dr Charles Shepherd
Hon Medical Adviser, MEA

 

[msf]

I would advise considerable caution with regards to assuming that the HPA will be at the forefront of testing for any particular disease. This is based on my own experience: I discovered that the HPA testing guidelines for Yersinia Enterocolitica are about 25 years out of date, and pretty much useless for cases such as mine. I would advise working out for yourself whether the test you are being offered is appropriate for your case.

 

[msf]

Btw, I also fell ill in Asia - where were you struck down? I was smitten in Vietnam.

Oh, and I also suspected that I might have picked up Lyme in Asia, so I appreciate the uncertainties involved - I found the case reports of Lyme published by Japanese and Taiwanese doctors to be of some help, but annoyingly the Taiwanese authors didn´t state what test they used to determine whether their patients had Lyme.

 

[Vojta]

Btw, I also fell ill in Asia - where were you struck down? I was smitten in Vietnam.

Btw, I got sick one year after I returned from Vietnam and Cambodia. Some symptoms appeared in the meantime. I didn't pay attantion to them back then but I know those changes were sign of increasing inflammation in my body before CFS-like illness triggered after tonsilitis. (Vaccinations could play role too.)

I'm worried I could pick up some other unknown/untested pathogens there.

 

[msf]

Yes, it´s a pity that the bugs seem to like SE Asia as much as the tourists do!

 

[charles shepherd]

I would advise considerable caution with regards to assuming that the HPA will be at the forefront of testing for any particular disease. This is based on my own experience: I discovered that the HPA testing guidelines for Yersinia Enterocolitica are about 25 years out of date, and pretty much useless for cases such as mine. I would advise working out for yourself whether the test you are being offered is appropriate for your case.

I know that a significant proportion of people rely on the commercial/private Lyme Disease tests, rather than the NHS/HPA tests, and they obviously produce a different result in some cases

And as you know, there is considerable concern about the way in which some of these commercial tests are producing false positive results for Lyme Disease. In fact, a perfectly healthy journalist colleague of mine tested positive for Lyme Disease with one of these tests through the private medical sector.

So I would still strongly advise going through HPA testing at Porton Down as well before relying on a commercial test diagnosis

 

[duncan]

@charles shepherd , if I get tested using the tests you highly advise, and I test negative, what does that tell me?

If I test positive using the types of tests you are highly advising, what do those positive tests tell me?

 

[msf]

Haha, Porton Down, a name to inspire confidence!

I was trying to suggest that either path may have its pitfalls, and it is best for the patient to look into these things themselves and not leave it up to any ´authorities.´

 

[brenda]

Lyme needs to be a clinical diagnosis with a lab test for backup so l suggest that you take one of the herbal remedies like Samento to see if you react via herxing or perhaps a trial with doxycycline if your gut can take it for the same thing before you pay for testing in the event that you cannot afford a LLMD.

 

[Valentijn]

@charles shepherd , if I get tested using the tests you highly advise, and I test negative, what does that tell me?

If I test positive using the types of tests you are highly advising, what do those positive tests tell me?

Based on the research I've read, a positive result on the two-tier system (is that used in the UK?) means you probably have Lyme.

But a negative result doesn't even come close to ruling out Lyme, since the tests have a false negative rate somewhere between 30% and 50%.

 

[duncan]

Are you IgM positive after 60 days post-bite? Be prepared to have that discounted.

Are you IgG positive within 30 to 60 days post-bite? Be prepared to have that discounted.
Are you IgG positive outside an endemic area? Be prepared to have that discounted.
Are you IgG positive without ever having evidence of a bull's eye rash? Be prepared to have that discounted.
Are you IgG positive after any sort of antibiotic therapy? Be prepared to have that discounted.

Those are possible objections that I rattled off the top of my head. I think there are more.

As you know, @Valentijn , the potential problems with false negatives could fill half my study's book shelves.

BTW, I agree that a positive test means you are probably infected. But the only thing you can feel absolutely confident about is that you'd been infected at some point in time; a positive may just indicate the echo of an earlier, resolved infection (at least supposedly - I don't think I necessarily buy into that, either. That's at least in part based on a couple old Steere studies that I am not so comfortable with.)

I'm pretty sure that the UK structured its approach to Lyme very similar to the CDC approach, i.e., it is a 2T protocol. But it's not my country, so not, er, positive.