I’ve been off the board for a while. I was very confused with my Lyme test results & didn’t want to post here before doing my own Lyme research and looking into it properly or before I had the 2nd set of results in front of me. Now that I have it all, I wanted to let you know my experience with Lyme testing. I will try to keep it as as straight forward as possible but as I have done quite a bit of research I want to include as much info as poss.
In a one paragraph summary, I can tell you that my first Igenex testing said I was IGM positive and IGG negative. I had many indeterminate bands which it seems many doctors in the US will treat based on. UK doctors will not. I became convinced I had Lyme. The hospital I went to said they wouldn’t treat based on this result but would if I had a positive MELISA test. This tests for active infection. I was very much negative. Since this test, since researching Lyme relatively heavily and since having a very long, very through and very hard think about my migraine issues, I have concluded that I probably do not have Lyme. I believe these Igenex test are sensitive and may report Lyme present but that a lot of people would probably show as having Lyme present but not be symptomatic. I believe the fact I have a family history of migraine, my migraine gets worse around my period, and that my MAV clearly worsens when I am stressed, massively points towards MAV. I also have seen a very large improvement on Clonadine so I will not be exploring Lyme any further.
This is how I got to that conclusion. It’s long. If you don’t want to read it, I won’t be offended but thought it might be sueful for those considering Lyme disease:
There is a lot of talk of Lyme on this forum and the theory that Lyme disease could be a trigger for MAV interested me, particularly as I remembered being acutely bitten by sand flies about 12 years ago. (I read that although ticks predominately transmit Lyme, there is some evidence that sand fly and mosquitoes can also transmit.) A newbie I met on another site has told me she was put off Mvertigo by the negative attitude towards Lyme. I think it’s very important that we to do not alienate new comers because of the Lyme issue. Instead I think it’s important to look at Lyme with a logical, clear head and with as much scientific evidence as possible. Having said that, it’s difficult to use scientific data as it seems that as Lyme only really came about in the 70s, the scientific evidence is somewhat lacking and instead many works rely on anecdotal evidence.
As I am fortunate enough to have private health care that would cover the cost of testing IF RECOMMENDED BY A DOCTOR only, so I visited the Breakspear clinic in the UK. I found them to be a money making establishment, they wanted me to have every test under the sun, even suggesting that my migraines were caused by my filings in my teeth, as well as many food allergies. I was only there because I knew they would provide me with a doctors letter which said I should have Lyme testing as this was what I requested.
It was expensive. Approx £200 for the appointment. They offered me the basic Lyme panel, but I wanted to add co-infections on too seeing as I could claim the cost back. This took the bill up to about £1300 I think. The doctor was crap. He didn’t know much I didn’t already know. He wasted time by reading out paragraphs from a screen. I was told I had a slight balance issue. NO SHIT SHERLOCK!
Igenex test results:
IFA: This is the 1st screening step in America. I got 40 which is just on the lowest border of equivocal.
WESTERN BLOT: This is broken into 2 parts. IgM measures for active, current infections. IgG measures for old /long term infections.
I registered POSITIVE on the IgM (current active infection) and NEGATIVE on the IgG. (old/long standing infection) (Would have expected the other way round but the doctor said the Lyme bacteria is great at hiding in cells and also ever changing/fluctuating so this is quite common.)
I have since read a paper stating that if you suspect chronic Lyme but get this wrong way round result, it probably means it’s a false positive and you should disregard your test mvertigo.org/articles/lyme_m … ns2013.pdf.
As expected, the rest of the breakdown of the test isn’t straight forward either. And here is why.
First you need to know that not all the bands tested for are “Lyme specific”. All the ones in grey below could be indicating the presence of a different illness. But the ones in red ARE Lyme specific- they can only be a reaction from the Lyme bacteria.
Western Blot Bands description (note: cross-reactive means it could indicate other spirochetes, specific means it ONLY happens when Lyme disease is present. Borrellia or Bb is Lyme disease.):
18 p18 flagellin fragment
20 cross-reactive for Borrellia
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb
28 outer surface protein D (OspD); Oms28; specific for Bb
30 OspA substrate binding protein; common in European and one California strain
31 outer surface protein A (OspA), specific for Bb
34 outer surface protein B (OspB); specific for Bb
35 specific for Bb
37 specific for Bb
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection
45 cross-reactive for all Borellia (sometimes people with Lyme who have this band positive also have the co-infection Ehrlichiosis)
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein
60 cross reactive for all Borrellia
66 cross-reactive for all Borrelia, common in all bacteria
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients
So we’re only really bothered with anything highlighted in red.
Looking at the IgM first, the blurb at the top of the results states that it’s considered positive by the lab if 2 or more of the double starred bands are ‘present’. It also states the criteria for CDC/NY which is the American equivalent of the HPA. This is much more strict. I would be negative under their rules but most people would- it’s a crazily high bar.
It then states that presence of one double starred band or indeterminate results on double starred bands has clinical significance.
Indeterminate is accepted by some doctors as a POSITIVE. This is because these IND results ARE a reaction of the Lyme bacteria on that band, it’s just too weak to reach a full positive response. In my mind, and many others, what else can cause an IND result on a Lyme specific band, other than lyme bacteria in the blood? This does worry me. But then, on the flip side, as I have already said, maybe many people have Lyme in their system but are not symptomatic. It is supposedly an ‘epedemic’ and would make sense as to why the NHS at least are so closed minded in testing for it. I really would go as far as saying I believe the conspiracy therorists who say the NHS know everyone’s got it but don’t want to admit it. Maybe Lyme IS responsible for all our aches and pains and niggles but to treat everyone would cost shit loads and it just isn’t feasible? I digress…
I’ve put arrows next to the lyme specific bands.
The IgM: On this one I show 1 positive Lyme specific band and 3 IND lyme specific bands:
My IgG result is considered negative but it has 3 IND results on lyme specific bands as well as a positive on a double starred band:
I was negative for all co-infections. Apparently if you have Lyme you are likely to have coinfections also.
The thing is, I see why people would get results like these, with symptoms like mine and believe they have Lyme. And I wouldn’t blame them whatsoever. I struggle to see how you can register as IND on a 5 separate lyme specific bands, let alone the 1 positive lyme specific band I did register on and a doctor not say, ‘hold up, what’s going on here? Lets look a little closer…’… And to be fair, the Breakspear did. They sent me for the MELISA test. Strictly speaking this is a bit backwards, but it served its purpose.
The reason I looked into Lyme is because a reasonable amount of people here did not get better on migraine drugs, and tested positive for Lyme. But… Most of these people are in America. Some of these people had much more positive tests than me, some similar and some weaker. Their doctors obviously took a view of their clinical symptoms and the test results and treated accordingly. But this worries me. Some of the treatments for Lyme are pretty radical. I’m a member of one Lyme group on facebook and one person’s dr suggested they remove her gallbladder despite it functioning well!? Also, I’d not gone up much in Clonadine when I took these tests. By the time the results were in, I had increased it and was doing very well indeed.
This was my 2nd test, the Melisa:
Ultimately, I think you have to do your own research, keep a logical head, and know your own body and take your own view there. It is very easy to get carried away in the obsession to find an answer and a solution to our horrible symptoms. But I think it can be dangerous if there is no one around to counter balance your argument. I have been fortunate enough to have been in contact with Scott who has been a legend in understanding why I wanted to investigate this and respectfully discussing it and my results with me, whilst also pointing me in the direction of articles and journals about Lyme, and generally going over the arguments for each illness, VM and Lyme. I am also fortunate enough to be in daily contact with the lovely Dizzie Lizzie who also has her own Lyme diagnosis so I’ve been able to pool a wealth of info from her. Interestingly, she has recently been turned up side down by a barrage of negative Lyme results and is now treating migraine. She has a very scientific mind, so I think it’s very important to look at her decision and take a lot from that.
A little bit more about the basics of Lyme I learnt from my research and the testing process:
Chronic Lyme or Late Stage Lyme
• If Lyme is not treated at onset, it can develop into ‘chronic’ or ‘late stage’ Lyme, months or years later.
There are a huge long list of symptoms. Lyme is multi-systemic. As such it’s very easy to diagnosis yourself with this.
• When the Lyme disease has crossed the blood/brain barrier, it’s referred to as Lyme neuroborreliosis.
Chronic Lyme is controversial. Why?
- Some doctors do not believe that ‘chronic Lyme disease’ exists.
- Chronic Lyme disease can mimic many other diseases and conditions, such as fibromyalgia, chronic fatigue syndrome, migraine and other viral illnesses. lymediseaseaction.org.uk/abo … diagnosis/
- Treatment of chronic lyme via long term antibiotics is not looked upon favourably by many doctors who believe long term antibiotic use is damaging and that there is not enough evidence to support it. Many doctors are not willing to treat Lyme more aggressively than oral antibiotics, despite evidence to suggest that patients do improve on high doseages, IV antibiotics and other methods of treatment.
- Testing methods are open to criticism particularly with regards to how many false positives and false negatives they produce.
- The NHS and HPA seem pretty cagey regarding Lyme disease. Why? Some people believe Lyme is an epidemic and that many people have it without realising (many people not showing symptoms.) If everyone gets tested and comes back positive, treatment will obviously be expensive.
- Insurance companies are also cagey about Lyme, often paying for only a certain duration of treatment.
Diagnosis and testing in chronic Lyme
• The LDA (Lyme Disease Action group) and LLMDs (Lyme Literate Doctors) believe a clinical diagnosis should be made i.e by looking at a patient’s history and symptoms, with any lab test results as ‘back up’ evidence as support.
• The NHS agree but it appears to be difficult to get anywhere if you fail the first screening test, let alone the second.
Testing and problems with it
• The NHS operate a 2 tier system-
- Screening ELISA test. If equivocal or positive, it goes to stage 2.
- Western blot to detect antibodies to Lyme bacteria.
(Though if a patient presents with the bulls eye rash in early Lyme, no need for any testing.)
- Western blot to detect antibodies to Lyme bacteria.
Stopping at step 1- With regards to the NHS’s approach to testing, by today’s diagnostic criteria, if you test negative by ELISA, you don’t have Lyme disease and they will not conduct a Western Blot. Then even if you test positive, you still do not have it until you also test positive on a Western blot.
A recent study shows that the Western blot can be less than 50% accurate and the ELISA is 50% accurate. NOT an accurate test.
False positives/false negs- There are arguments to say that all these tests can cause false positives and false negatives for many different reasons.
You just need to do a simple google search with the test name, plus “lyme” and “controversy” or “accuracy”.
Other means of testing-
- Private testing can be done by the Igenex lab in the USA or Infectolab in Germany.
• The benefit of a Western blot through these companies are that they do it regardless of the ELISA outcome, and they also report the reaction- positive, indeterminate or negative- on each bacteria band tested for/listed. The NHS does not do this. BCA in Germany are an option for diagnosis and treatment as is travel to the US.
• COST: Germany expected to cost maximum £4k for diagnosis, tests, travel and stay. Treatment range from £350-£650 per month depending on whether treatment is herbal/oral antibiotics or IV antibiotics. UK to USA- obviously a much higher cost, but if treatment orally, can conduct Skype consultations after initial meeting. Breakspear- can end up costing up to 25k!! (money makers)
- The same accuracy questions surround these tests as already mentioned. But your next hurdle if you live in the UK is that most GPs, infection disease consultants and neurologists do not have the experience or knowledge to even analyse the tests fairly, let alone treat.
There are lots of articles stating Igenex give false positives. And page upon page of anecdotal evidence online of hardly anyone ever getting a completely negative result from them. Arguably people say that if you’re that sick, you wouldn’t be paying for expensive private testing. But I’m not so sure.
On the flip side, the CEO of Igenex recently gave a presentation that apparently states that he believes their testing is correct and more importantly, that if you even show 1 indeterminate band, you have Lyme…… I haven’t watched it myself. To be honest, I don’t want to open the can of worms and add to the Lyme confusion. I can’t actually find the link- maybe someone else, Lizzie?, can help out there.
Where from here?
• Is it better to attempt treatment for Lyme and see if you get any positive response? Perhaps yes. … If you can find a doctor who will do so. But, if you do that, and get better, you need to be so sure that nothing else could be influencing your symptom remission. Less stress for example.
• Personally, I became convinced I had Lyme and not migraine as I have a history of heart palpitations and fatigue since my bites. I got a copy of my GP consultations from birth. £50 from NHS… to check I wasn’t going insane. But then I found out that Dr Silver says migraine can cause both these symptoms. I have booked in with a cardiologist instead to see if he can see anything causing my palps.
• As I said in my first paragraph, after researching the flaws of the testing processes and getting the 2nd tests as ‘negative’, as well as seeing a strong improvement on Clonadine and a very strong correlation in my dizziness and stressfull events, I am more convinced than ever that I have migraine and Lyme is not a factor.
• I believe it is really important to be sensible about this and consider your history, and your reaction to migraine meds first. AND remember that trial and error of migraine meds can take a long time. It has taken me 2.5 years to get to a state where I was operating at 95% for about 2.5 months. I didn’t even realise I was this well until I had a big fat crash last week after a particularly stressful time looking after an epileptic friend, skipping some meals, skipping sleep and sitting under the A&E harsh lights.ARGH!
I think that’s it. I’ve written an essay.
Oh, one other thing. Another thing that swung me more towards migraine was reading Dr Silver’s very details analyse of migraine and the crazy symptoms it can show. You can view it here:
migraine.org.uk/latest-news/ … ort-event/
I’ll leave you with these quotes and a couple of Lyme links.
• Chronic Lyme Disease
“Some fringe medical and other practitioners diagnose this condition in patients who have serious but nonspecific symptoms and no previous history to suggest Lyme borreliosis. Other patients diagnosed with “chronic Lyme disease” have had serious conditions such as motor neurone disease, Addison’s disease, and systemic lupus erythematosis (SLE), and they required very different types of treatment to those that had been recommended by the fringe practitioners concerned. Some practitioners use unorthodox tests as discussed above, and follow the guidance of a group whose website was shown to contain inaccurate information [10, 12]. Their guidelines are not supported by good quality scientific evidence and are likely to lead to a high rate of misdiagnosis. An international expert group recently reviewed issues related to the diagnosis and management of ‘chronic Lyme disease’ . Patients are strongly recommended to seek advice from their own general practitioners and experts such as accredited infectious disease specialists before embarking on potentially hazardous and expensive treatments.”
Lyme War in the UK: http://www.healthmatters.org.uk/?p=64