Lyme testing question

Is anyone able to help me with information about Lyme testing. I am in the UK but have asked Igenex for a testing kit which they are sending out to me so I can get a blood sample sent off to them. Igenex have emailed me a price list with all their tests on it. It is long and complex with various combinations for Lyme and Co-infections. I don’t really have a clue what tests I would need to rule out Lyme etc. Ideally I want to spend the least amount of money but want to cover testing for the basic stuff. Is anyone able to help advise on this? I can email a copy of the Igenex form via PM/private email if this helps? Thanks x

Hi Jem

I can help…I went down this road and did quite a lot of Lyme research prior to finding the VM forum. For me, it turned out that VM was the answer, and my Igenex tests were aligned with that truth. I was negative for Lyme Babesia etc etc etc…but got quite the education along the way. Let me know if you’d like that help…I’m happy to give it…I know the prices are sky high!!!

hi dolfnlvr,

Did you have a negative test for lyme? I am asking because i have yet to find someone who has had negative results.

Hi Jem,

Good luck with the tests. How you get feeling?

Hello,

I have researched this extensively too, under the expert guidance of Dizzie Lizzie.

My advice would be not to bother with any of the PCR testing. It is not worth the add on. You want the IGG and IGM Western Blot. Up to you whether you want to include co-infection testing at this point.

I would go for the Basic Lyme Panel @ $260.

You could then add the Bartonella, Babeosis and other coinfection Igg and Igm testing on individually at $135 each. Or there are complete co-infection panels.

If you want to do it the cheapest way, I would suggest just doing the basic lyme panel.

Lizzie, would you agree?

I wish I had done mine that way round instead of the way round that the BS clinic did mine. Incidentally, not got my full results in yet, but will post once I have a more full/ clear picture.

x

Robert–

Ahh–here is the interesting story to be told. I DID have a negative test result from Igenex–and from my generic testing company in the US known as LabCorp. There wasn’t “sufficient evidence for a positive finding.” I had a positive ELISA test in 2000, but a negative follow-up Western Blot (no idea what bands showed or didn’t–back then I didn’t know it mattered) so was deemed a negative test. Then, when all this stuff showed up in 2011 I thought maybe…

So I went back down that road. Regular blood tests were negative–Igenex was negative, but the LLMD insisted on more tests for Babesia and Bartonella, and special types of Lyme not usually found on the East coast etc etc etc—cost me (in the end) about $7500 over time!!! Meanwhile she also sent me to a company called Neuroscience which ran some new test, currently unheard of generically in the popular med world–it found highly inflated levels of complement in my serum indicating an ongoing inflammatory response–THEY say indicating Lyme disease. Interesting to me in hindsight however, as I’ve since found that I actually DO have MS–which is an ongoing inflammatory autoimmune disease–so the test did indeed find something–but it wasn’t what they thought they were looking for :shock: .

The LLMD continuously insisted that since there were no other answers for my weird symptoms, and since I had a history of tick infestation (true–I had walked through a nest of deer ticks in the late 1990’s and wound up with 1000’s of the things on me–took a course of prophylactic antibiotics that month because even the primary care doctor realized there was no way to find them all!!!) that there was a very good chance that this was Lyme related. I had no other answers, so went forward with the antibiotic treatments. Then I found this forum—and a doctor that was familiar with MAV—and we all figured out what was really going on. Then, shorty thereafter we found the first lesion associated with MS, which may well have been what was triggering the migraine from the beginning, who knows. Bottom line–I still have no evidence that I ever had the actual Lyme infection.

I don’t think the LLMD meant any harm–and once we found that the MAV treatments were working even she suggested that this was likely the better diagnosis for what ailed me–so I put no charleton role on her shoulders–she really was trying to help a woman with an unknown but clearly real ailment that no one else seemed able to solve/treat.

I did, however, learn a WHOLE lot while living through that experience–and I learned many of the misconceptions held by patients AND by doctors–and I learned about some of the beliefs held even when all evidence points otherwise. When you are sick, you will grasp at any straw to aim toward wellness–and when there is a doctor pointing you in a direction that may or may not be the correct direction–it is even harder to see the forest for the trees!!!

I had a doctor who was truly trying to help–but her “partner” was much more the charleton type–kind of slimey–put me on edge even to speak with him. He pushed the supplements and special treatments and “special” heating pads they had in the office–he made me skeptical of everything I heard in that office, and I wouldn’t even allow his nurses to take my BP–so, no–I don’t think the scene is 100% altruistic. My doctor left the practice shortly after I moved on to seek treatment for MAV…

Thank you everyone for your replies. I have heard from a few others via PM including Lizzie and I think she concurs with what you said MM about the Basic Lyme Panel for $260. Does anyone have an arguments for doing something other than that, such as the Complete Lyme Panel $475 or the Initial Lyme Panel $410. Ideally I would like the cheapest way possible to rule it out but obviously don’t want to do something so minimal it is useless then have to pay more in future. I guess if the basic panel shows up Lyme then I could look at having further tests for co-infections etc.

Rob, I do know personally of one person from another forum who had the Igenex tests and it came back negative for Lyme. That said, there seem to be a lot of positives for sure.

Thanks all x

dolfnlvr , sorry to hear you have MS. So do you think MS is triggering MAV?

I just told someone else–the MS–though a wrench in the road, is just that. I don’t throw it out there for sympathy or “WOW” or any of that. It’s a reminder that lot’s of things happen to all of us, and many of them can play a part in VM. I do think there is a good chance that the VM and the MS are related. There was no sign of MS when the VM started–now there is. I think there is a good chance that I was starting to have autoimmune issues that were attacking/causing inflammation of my vestibular nerve(s) thus causing issue with migraine, but who knows. One can have both separately, and/or one can cause the other. Life is what it is–and we have to live it with the cards we get.

I’m lucky so far, and hope to keep the MS under control. There are many treatments that 20 years ago were never heard of–and today–well, today they are “standard.” I’m betting that within 15 years there will be STEM Cell treatments to help heal any lesions left behind as well.

It is common for people with MS to suffer from migraine–and I have to tell you–this forum is SOOOOO helpful. I’m hoping you guys don’t ask me to go anywhere–when I start feeling loopy–there’s no place like home :lol:

I emailed the Lyme Disease Action website for info on UK Lyme testing and thought I would share their response here to assist those in the UK who may be considering it. It has however made me more unsure as to the next steps for me especially as I have never been to the USA:

Dear Jemma

You cannot believe all that you read on the public internet forums, although there is often useful advice there. There is nothing wrong with the NHS tests, and you would be better off asking your GP for a blood test first.

You have probably read on our website that the UK (as other countries) operates a 2 tier testing process with a screening ELISA first, then only if that is positive followed by an immunoblot specific for Lyme disease.

Patients pay for IGeneX tests and therefore get an immunoblot test as well which may be why people feel it is good. However, we have been unable to get full details of their test from the company and so neither LDA nor the NHS know how far to trust the results. Because of this a positive IGeneX test result would be unlikely to get you UK treatment. Although we know of a lot of patients with positive IGenex test results, we do not know why this should be so, and we are still trying to get more details from IGeneX.

The blood test uses antigens from the Lyme bacteria and the bacteria which cause Lyme disease are different in Europe and the USA, so USA tests are not generally as suitable for UK patients unless they definitely caught their infection in the US. The NHS UK test does include both European and N American antigens in the test, whereas the IGeneX one only uses N American antigens.

The best option for anyone who suspects they may have Lyme disease is to write a brief summary and take it to their GP and ask for a blood test. This summary should say:
• date of tick bite or tick exposure, if known
• description of any rash
• simple summary of history of illness with symptoms
In particular try to think of any event just before your illness started 4.5 years ago that may have exposed you to tick bites - a camping holiday, walk through the woods, visit to rural Europe, clearing out an overgrown garden etc.

The reason for putting this in writing (as well as explaining it) is that GPs have little knowledge of Lyme disease and may not know which symptoms are important; they will try to document the full consultation but are unlikely to have time to document it all. When, some time later, the test result comes back, the GP is likely to phone the laboratory for advice and will look at the notes. These may just say “has vestibular migraine, wants testing for Lyme”. It would be more useful if they said “had tick bite followed by expanding rash and illness. Many symptoms including fatigue, numbness, joint and muscle pain… etc”. Then the lab will be able to give better advice.

In your case you probably need to justify why you think Lyme disease may be a possibility for you, rather than vestibular migraine, and in what way it fits your pattern of symptoms better. It is very difficult for both patients and doctors as the symptoms do overlap somewhat. You may know of this leaflet from the Hospital for Neurology and Neurosurgery uclh.nhs.uk/PandV/PIL/Patien … ziness.pdf. It might be worth comparing the information there with that in our leaflet on Lyme Neuroborreliosis to see if that helps convince your GP, or indeed yourself.

I would suggest that you start with an NHS test. No test is perfect: Immunoblots from different manufacturers vary - one is not necessarily better than another, just different. The NHS can also check for other tick-borne infections, but because these do all cost money they need some justification for this.

If for any reason you do want to proceed with an IGeneX test, your surgery might take the blood for you, though they would probably make a charge. Your other option would be to contact a local private hospital and ask what they would charge for doing this. From the IGeneX list that you sent, if you want to minimise cost, you would need 189 Lyme Western Blot IgG.

The Basic Lyme Panel sounds as if it should be useful, but PCR is very unreliable on blood as there are very few bacteria in the blood after the first few weeks of infection, so a positive result is very hit and miss. The IFAs are just screening tests - so need confirming by a western blot anyhow. The IgM tests for antibodies which are generated early in disease before the IgG antibodies appear and if you have a 4 year old infection you are past that stage and if you had only IgM testing positive in that whole panel, few doctors would believe the result to indicate late disease.

The coinfections are many of them aimed at USA infections and may not be appropriate for you, but if you want to take that route, let us know, and we’ll look in detail at those tests for you. The same comment applies, though - if you have a positive result from IGeneX, a UK doctors is unlikely to treat you based on the result.

It is important to realise that no test can rule out Lyme disease - some people, for one reason or another, do not generate sufficient of the antibodies which are detected by the tests.

I hope this helps, but if you have further questions just reply to this email, ensuring the support number (with its #) remains in the message subject.

Wow–that is really detailed information for them to share with you–and it makes a lot of sense. She makes one very VERY good point. Have you ever had a standard blood workup for Lyme in your country via your regular doctor? The ELISA, which tests for antigens (basically whether you’ve ever been exposed) followed with a Western Blot to determine whether or not the specific proteins from Lyme B. is in your system? She is completely right, you know. This can be completely negative, and it doesn’t mean you don’t have Lyme–BUT–if it is positive, well then you’ve saved yourself a ton of time, money and angst.

One thing about my situation that stuck and left me going the longer route was that I had a positive ELISA test and a negative Western Blot at one point. Biologically this meant that I had been exposed to Lyme but (according to science) didn’t have an active infection. Well–that was what made me think maybe there was Lyme in there after all (years later). As the previous posts indicate though–even Igenex can’t find Lyme in me now though…if it’s there even the easy to please testers aren’t finding it :wink:

Yes it was a good lengthy reply from them I must say, it surprised me! I haven’t had any Lyme tests as yet no. I never really considered Lyme as a diagnosis for me until someone on a forum I used to post on about Vestibular Neuritis kept urging everyone there to get tested for Lyme. He was from the USA and had been treated for Lyme and was a lot better so he wanted to spread the word to everyone who had labyrinthitis type symptoms. From what I have read from that guy and from posters here on this forum, the UK Lyme testing is not worth the paper it’s written on. I don’t know if that is true, simply what I have been told. I therefore thought that Igenex testing was the only way of getting a chance of an accurate result.

The other issue regarding testing over here is that my GP is reluctant to spend money on anything they don’t have to. They particularly like to say that ‘in these times of economic austerity’ etc etc as a reason that no funding can be given to anything superfluous to requirement as they see it. I have already clashed once over them referring me to Dr Surenthiran for MAV treatment. They did give in to that eventually but I don’t think they will be too accommodating to me going back now and saying actually I now think I might have Lyme, please arrange for testing. At the least they will want the say so of Dr Surenthiran for that, and given he is treating me for MAV, it is unlikely he will sanction it. I thought it would be a lot easier to just arrange the testing privately and then the only thing I would have to ask my GP surgery for is to take the blood sample. Even that I was worried about having to ask them for. Those two reasons seemed to add up to me going privately through Igenex for any testing…

Really interesting thread. Nice to be able to finally discuss this now in a rational and normal way. :slight_smile:

I emailed Dr Rauch about this recently and even he found the whole testing of Lyme confusing and so refers to a consultant at Mass General. He notes that a geat deal of people are AB+ in his area. Whether or not that means it is a false positive in many cases or just one of those things that doesn’t necessarily mean it’s a problem for that person I don’t know.

“I confess that I find the whole issue of Lyme disease and Lyme testing totally confusing. Here in the northeast US, Lyme disease is endemic — LOTS of people are Ab(+) so I just don’t know how to make sense of that (Igenex) test. I do not consider Lyme a common explanation for hearing or balance disorders. If a patient comes with a specific question about CNS Lyme, I send to my ID consultants at Mass General Hospital next door for an opinion.”

See the following diagram:

http://www.cdc.gov/lyme/healthcare/clinician_twotier.html

Scott

If Dr Rauch finds it confusing then no wonder us mere mortals are super confused!

I did read that some people say they are now being treated for Lyme using herbs and supplements which makes me wonder, even if I did test positive for it, would the treatment be any use.

Scott - slightly off topic but I just wanted to ask whether you have or could obtain any current info from Dr Rauch about what his preference is meds-wise for treating VM at the moment. I remember when I first came to this site last year and I read and re-read his FAQ answers in the Questions to Neurologists section of the site and that is why my first med was Nortriptyline as it was what he used. So far it has been the only med I have tolerated. Would love to know if he still mainly uses Nori and/or what others?

— Begin quote from "Jem"

I did read that some people say they are now being treated for Lyme using herbs and supplements which makes me wonder

— End quote

Hi Jem – this alone should make anyone raise an eyebrow. Next they’ll be telling you to use homeopathy. :roll: I’d be moving on from that sort of advice.

— Begin quote from "Jem"

Scott - slightly off topic but I just wanted to ask whether you have or could obtain any current info from Dr Rauch about what his preference is meds-wise for treating VM at the moment. I remember when I first came to this site last year and I read and re-read his FAQ answers in the Questions to Neurologists section of the site and that is why my first med was Nortriptyline as it was what he used. So far it has been the only med I have tolerated. Would love to know if he still mainly uses Nori and/or what others?

— End quote

Yup, it’s still his first choice of med. Most specialists have their favs and stick with what they know best. Steve sees very good results with Nori and so that’s his first pick.

S

— Begin quote from "Jem"

Patients pay for IGeneX tests and therefore get an immunoblot test as well which may be why people feel it is good. However, we have been unable to get full details of their test from the company and so neither LDA nor the NHS know how far to trust the results. Because of this a positive IGeneX test result would be unlikely to get you UK treatment. Although we know of a lot of patients with positive IGenex test results, we do not know why this should be so, and we are still trying to get more details from IGeneX.

The blood test uses antigens from the Lyme bacteria and the bacteria which cause Lyme disease are different in Europe and the USA, so USA tests are not generally as suitable for UK patients unless they definitely caught their infection in the US. The NHS UK test does include both European and N American antigens in the test, whereas the IGeneX one only uses N American antigens.

— End quote

Got to be honest, this worries me a lot.

  1. I never knew that Igenex tests could be missing European strands of Lyme.
  2. I didn’t know Igenex were not forthcoming in handing over info/details on their tests i.e why so many positives.
  3. We know the NHS tests also have their pitfalls- main problem being that the first part operates as a screening process- whereby if you get a negative ELISA test, they will not usually test you on the western blot. ELISA tests have been found to be 50% accurate so you mgiht as well be tossing a coin.

I am in the midst of weighing everything up right now myself. There is a hell of a lot of information out there and it’s hard to separate the crap from the actual scientific stuff sometimes.

I have posted points 1 and 2 above onto a Lyme forum just to see what their responses are. Will let you know.

Hi Jem,
The best And cheapest test would be the basic Lyme panel which costs 250. Don’t bother with the coinfections because that is a clinical diagnosis and the testing is not accurate. Yes, alot of people do try treating Lyme with a herbal approach … As anyone may with any disease. It has helped some but antibiotics are def the way to go. A lot of people have had great success with herbs and antibiotics together. Coinfections are so hard to treat and it takes at least 6 months to a year.
Hope you are well.

Lisa

Thanks Lisa. Hope you are doing okay. Will keep you posted if/when I go for the testing x