Results are back, can you help me understand them

ianmd said...
New here, found through Google search.

Appreciate I need a professional to look at these, but do they give me a steer in a specific direction?

Get loads of symptoms, 3 years in, nothing found, so ran a few private tests through Arminlabs (not all so appreciate a missing). These are the highlighted ones:

MCHC 31,80 (33,00 - 37,00)
Borrelia b. Full Antigen 2 SI
Borrelia b. OSP-Mix 2 SI
Borrelia burgdorferi LFA-1 2 SI
CD57+ NK-Cells (absolute) 22 /ul (100-360)
B.burg.+afz.+gar.IgM 1,226 (>=1,00 positive)
B.burg.+afz.+gar+round bod.IgM 1,156 (>=1,00 positive)

IgG was negative, all other CD57+ and NK results nominal

Did you test IGM also or only IGM? I was neg 10 times for lyme, bartonella and rickettsia but used Igenex lab and they all came bk positive. Did you ever have a positive lyme IGM or IGG? Ever do a western blot test for lyme? If so how many bands were reactive? Testing isn't too good for lyme etc.

Garzie said...
so any positive result should be given more significant weight - than for instance the lack of IgG
especially in an infection with an organism that is known to interfere with the bodies ability to produce the antibodies these tests look for.

if it were me i would move towards treatment with these test results
i am in the UK - what country are you in and what plan do you have in mind for treatment

Thank you, I'm at the start of my journey now, I've had 3 years of testing with nothing to indicate anything so this came as a shock and relief in equal measure, but now left with endless questions.

I read somewhere that a IgM positive after more than a few months and in absence of a positive IgG means IgM should be ignored, but I don't understand how that can be.

My doctor is keen to see the results (and suggested getting private bloods done), but I know I need a specialist now. I'm in the UK too, so open to suggestions. I know some mention Hove, and some a Dr L in Dublin.

“I read somewhere that a IgM positive after more than a few months and in absence of a positive IgG means IgM should be ignored, but I don't understand how that can be.”

Nope - that’s incorrect.
I was IgM positive after a year of having Lyme and full blown symptoms.
I was told IgM means a recent infection OR an older infection that is still “active”

Four Lyme docs I saw - all of them said the same.

More detail on IgM vs IgG in lyme:

the lyme disease organism has the one of the largest genomes (amount of genetic code) of any bacteria so far discovered.
the large majority of this extra genetic material, compared to more regular bacteria, is dedicated to making different outer surface proteins
this enables it to change the proteins it has on its outer membrane - this is important as these are the ones the immune system is in contact with and trying to make antibodies to, which takes time - maybe 1 month and are initially IgM antibodies ( it later learns from these IgM antibodies what to make IgG antibodies to )
by the time the body has figured out what proteins to make antibodies to the organism has changed the proteins in the outer membrane and now looks like a new infection to the immune system - and so off the immune system goes again, trying to make new (IgM) antibodies to that - and so the cycle continues.....
you can see what an effective an immune avoidance mechanism this is - as the body never quite catches up to the microbe with its learned immunity.
you can also see how this would result in IgM antibodies being present on an ongoing basis in chronic infection
it is not always this way however - as the organism also has other immune disrupting strategies and one of these is it interferes with the body’s ability to make antibodies at all - and so we instead tend to see a somewhat randomised picture of: no antibodies, only IgM antibodies or a random mix of IgG and IgM antibodies on western blots in people with Chronic Lyme disease.

happy to help - that is what we are here for

unfortunately the tests are a measure of how the immune system is reacting - so doesn't tell us anything much about the state of the disease - symptoms are still the main guide for that

in general its hard enough just to get it to show up on the tests at all - becuase as mentioned above - there are many reasons for this - but the subject gets rather deep pretty quick.

the "weak positive" - is simply classifying how strongly antibodies in your blood reacted to proteins from borrelia

this is controlled by variables other than the number of bacteria - or the strength of the infection -things like the condition of the immune system - and the immune evading tactics used by the bacteria

so the results indicate that your body is producing antibodies to proteins present in the bacteria that causes lyme - and in your case proteins that match several species of borrelia that cause lyme.
( this may mean that several species are present - or it could simply be cross reactivity where antibodies react to similar proteins from each)

so - low or high levels doesn't tell us much about the degree or strength of infection
for instance - its common for people to have only low levels of reactivity in these tests if they have been sick for a long time - some people are sick and positive by other methods - like PCR and culture - but negative on these serological tests.

so, unfortunately - there is not much more we can learn from those results.

the CD57+ result is a count of a class of white blood cells are a type of natural killer cell involved in fighting infections - often found to be suppressed in chronic Lyme disease- but also in other chronic conditions - so again its only of limited help.
we can just say that having a very low count is consistent with lyme disease.

i also had negative results from NHS tests - and positive results from Armin - i went to 3 infectious disease experts in the UK NHS - two in Nottingham and one in London ( city college hospital London
all were of v little help i am afraid - they seemed to be of a fixed mindset that lyme was a rare disease and so my partner and i both had CFS or Post vioral Fatigue. frankly i am not sure if they would recognise it if they had it themselves. city college london were full of people with TB - i dont think they knew anything about lyme - and several of the things they told me about it i later found to be totally unsupported by the literature. this was however 5 years ago - s perhaps things have changed ....

i also went to see a private ID doctor - who came highly recommended and was even less help - said he thought formaldehyde from the house we lived in was making us sick - despite my partner living there for 4 years prior and being in rude health! - then both of us getting sick with the same symptoms at the same time after insect bites on a picnic....

end result is i am self treating
i will not lie - its been a long road - but i was not diagnosed until after 4.5years and v sick by that time
and i also have bartonella - and so i think i am a tough case.
i am curably around 60% recovered - but i was pretty active and high functioning before lyme so my 60% is probably better than a lot of people my age without lyme
my partner recovered much sooner

feel free to ask more questions - there are lots of helpful people here

all the best !
G

Hi Ianmd
my self treatment is documented briefly in my signature below - i have tried many many things - but these are the things that have helped the most

i have documented most of that here on the forum in detail - so there are more specifics on any of those approaches in my posts - you can find them using a search with my username - but i am happy to answer specific questions.

the issue i think we are seeing with claims Armin is bogus etc is more to do with the fact that all testing for lyme currently available is flawed - in that serologic testing for an infection that affects the bodies ability to produce the antibodies the test looks for is always going to miss lots of cases.

at the same time if exposure is greater than so far accepted in the main stream - then it will become exceedingly difficult to distinguish who is infected from who has simply been exposed in the past - via serologic tests - as there will be antibodies in both cases - and some false positives are inevitable when setting the cut-off for the test

and this ambiguity allows the non believers to believe what they want

by comparison, most tests for simpler infectious diseases are typically 99% sensitive ( picks up 99% of true positive cases ) and 99% specific ( 99% of positive results are true positives ) - so pretty much black and white

whereas lyme tests are somewhere between 20% and 80% sensitive - depending on which study you read - so even best case they produce 20x more false negatives compared to most tests doctors are used to - add to that the fact that all UK doctors are trained in the NHS where they are miseducated to believe that Lyme is a v rare, easy to diagnose and easy to treat disease - and you can see how there is a disconnect.

its not really an issue down to the lab - armin just select what they think are the best available tests and report the results

the overarching issue is that - rather than 99% sensitive tests - we have only v poor tests approx. 50% sensitive - that miss lots of cases allowing many chronic sufferers to go undiagnosed - and although all the guidelines ever written say diagnosis should be clinical based on symptoms and history - NHS doctors still refuse to do so without a clear positive result from an NHS sanctioned blood test.

if we had 99% sensitive tests - the disease would be diagnosed in hundreds of thousands of people - and doctors would be forced to recognise and treat it.

there are good people working on exactly this - but its not a simple nut to crack so will probably take a while

ref general approach to treatment
its good that you mention diet and lifestyle, as all of the things that help a person stay healthy will help someone with lyme to some degree and it takes many people years to come to realise this.
this is where a good diet, good sleep, lifestyle habits, exercise, mind body techniques for stress reduction and immune system benefits all have a role to play - as these things can help anyone who has any chronic disease.
in fact these things can be seen as foundational - that will support you body to be better able to heal itself - no matter what other treatment you opt for.
their impact should not be underestimated - as this is not a disease you can simply pop a few pills for a month or so and be cured
ultimately your immune system is in a battle with the infection - and the more you can do to give it the upper hand the better your chance of recovery.

turmeric has some specific anti-inflammatory actions that can be helpful in lyme - many other herbs have similar supportive or anti-inflammatory effects

hope this is of some help

everyone is different
-some never get ill despite getting bitten an infected
-some get ill but quickly get over it on their own after - a "summer flu"
-some get sick but get over it with the help of 2 weeks of doxycycline ( though some of these get ill again later )
-some get v sick and struggle to recover with many different treatments

a healthy lifestyle, diet, sleep regime, and stress reduction measures is a good foundation to start from.

my partner recovered to around 90% after very careful diet, healthy lifestyle, moderate exercise, some Buhner herbs - and some short courses of antibiotics given for an ear infection.

unfortunately the longer we are sick - the harder it typically is to recover - so its reasonable to assume you are likely to be towards the harder end of the scale - however people have recovered even after 20 years of illness - so its definitely possible and there is always hope.

the other main factor that contributes to how difficult we are to treat is the presence of co-infections. these are typically even harder to get accurate tests for (Armins tests were negative for me for bartonella and yet it can be found in my blood with thin blood smear). they often require different treatments to Lyme - and so you can see how that would contribute to treatment failures.
sometimes symptoms patterns can give clues - and treatment trials can confirm

NHS servers typically block attachments from outside the NHS - i have had that same issue - the surgery will have an address that can receive attachments - but often do not seem to be aware of it - you can also print the documents and take them in - or in my case they asked for it on a USB.

from memory the guidelines say that the doctor may prescribe further courses of antibiotics after an initial 2-4 weeks - but that's is a judgement call by the doctor treating - rather than a strict "the doctor should do X " type guideline - as such they have to feel comfortable justifying longer courses in the context of GP's generally being told to prescribe less ABX - and being taught if something doesn't respond in 6 weeks then its not an infection, believing lyme is rare and easy to treat etc

i also felt worse for the first 6 weeks on doxycycline - then mild improvements.

after that my GP became increasingly resistant to prescribing more abx - ultimately they are not equipped to deal with this - nor are any of the ID doctors i have been referred to

will your GP refer you to Dr L on the basis that he is in the NHS - and is an expert in this field ?

i only know of him through his ILADS presentations and publication

i just checked and he is based in Dublin - so in the EU - for some reason i thought he was based in Northern Ireland

my guess is this means he is outside the UK NHS - but i see he also founded the Lyme resource centre in Fife Scotland - so he might possibly be accessible in the UK somewhere

of course it may be that he only see lyme patients privately - but since he is the only proper ILADS LLMD in the UK / Ireland that i know of - may still be worth trying top see him privately

let us know how you get on