Help Interpreting Test Results please

[marcia135]

I would really appreciate any opinions on my Lyme results please.  It was done by IGeneX.

Lyme IgG/IgM Serology  0.36 LIV

Igenex Western Blot IGM result Negative
CDC/NYS result Negative
30kDa  +
39kDa  IND
41kDa  ++
83-93kDa  IND

Igenex Western Blot IGG result  Negative
CDC/NYS result   Negative
34kDa  IND
39kDa  IND
41kDa ++

I have had ME/CFS for 20 years and hypothyroidism for 11 years.  I don't remember a tick bite but it is entirely possible as I was living and working in rural areas at the time I fell ill.
Would you recommend any further tests, like ELISA?

[Stargazer_Lilies]

You have more + and IND than I do and I have lyme disease. I only have + and IND for 41KDa on Igenex.  I first fell seriously ill in 1997, then 1999.  I do not recall any tick bite except for a dead( or dormant?) tick in my bed during that time.

Prior to dx of Lyme, MDs floats CFS, MS and such ailments as possible dx for me. Anyhow I improved on Rocephin IV and I am not done with lyme treatment.

By the way, my hypothyroidism went away and I do not need thyroid meds anymore.

Find LLMD, and it is not easy as it sounds. Others will elaborates on that.

[mojogal]

Make sure you test for co-infections with IgenX. My hypothyroid is improving.

[mojogal]

Sorry meant to send it to you.

[JackieCalifornia]

Your tests have been done by IGeneX Labs in California, which is thought well of by Lyme specialists, so this is good.

However, Western blot tests are not perfect, and are just indicators.  That said, anything that has Lyme-positive bands should not be ignored, no matter how few positive bands there are.

=============================================
--- Igenex Western Blot IGM result --  Negative [IgM is the antibody your immune system makes shortly after an infection, and then it fades away]

CDC/NYS result Negative -->> this means that by the overly strict standards of the CDC (Centers for Disease Control in Atlanta) and the NYS New York State health department,

30kDa  +          -- unknown, probably a protein from the outer surface of the bacteria

39kDa  IND       -- this lights up ONLY when Lyme is present, and tho 'indeterminate', that is counted as a positive

41kDa  ++         -- could be any spiral-shaped bacteria, so it could be Lyme

83-93kDa  IND

=============================================
--- Igenex Western Blot IgG result  -- Negative  

[IgG is the antibody your system makes against Lyme bacteria later on in an infection, after the IgM fades)

CDC/NYS result -- Negative  

34kDa  IND -- altho this is 'indeterminate', it is usually counted as positive; band 34 lights up ONLY when Lyme is present

39kDa  IND -- ditto

41kDa ++   -- could be Lyme, could be something else

=============================================
--- Lyme IgG/IgM Serology  0.36 LIV

LIV = "Lyme Index Value", meaning the ratio of the IgG to the IgM test results:

     Lyme Index Value.
Negative = Lyme Index Value is  yours is here ***
Equivocal= Lyme Index Value is ≥ 0.8 & < 1.2
Positive = Lyme Index Value is ≥ 1.2
=====================================

A non-Lyme specialist doctor might say these results are not positive enough to diagnose Lyme, but given how very long you have been ill, that you have such positive tests is, to my uneducated eye, significant.

Has your MD considered doing IGeneX PCR testing?  It looks for Lyme bacteria DNA in your blood, instead of looking for your immune system reaction to Lyme (and the immune system stops making antibodies after a while, so the tests fade)

Like mojogal above, my thyroid went back to normal from hypothyroid once my Lyme infection was treated.

Co-infections are another issue ... your doc would have to know what to test for based on your other symptoms.  Bartonella and babesia are two common co-infections.

As to ME/CFS, those may be simply misdiagnosed Lyme.  Don't know, and often the docs don't know either -- they use 'chronic fatigue' as a description, not a diagnosis, since they don't know what causes it.

Let us know how you do, and what your doctor says!  Best wishes to you -- thank you for sharing your results with us.

[Ricobord]

My PA told me that it is their sickest patients who test negative on a Western Blot.  Lyme is immunosuppressive and over time, the bacteria move from the blood into the tissues.  When the immune system doesn't see it in the blood anymore, antibody production drops. As antibody production drops, you get sicker, as your immune system isn't putting up much of a fight anymore.

If you have had Lyme for 20 years, there is a really good chance you would test negative.  The fact that you show strong positives on the 41 band (the first, most common, and most persistent of the Lyme antibodies) and a slight reaction to two Lyme specific antibodies are indicators of Lyme Disease, even if they are not proof positive. I am not a doctor, but if I were you, I would start on antibiotics if a doctor were willing to give them to me.  It might take you months to start feeling better as you've been sick for so long so don't give up too soon.

Your doctor may also want to do an antibiotic challenge, which is to put you on antibiotics that work against Lyme, and then retest you in a month or so, to see if the dead bacteria hitting the blood stream has rekindled your immune system.

Keep us posted!

[marcia135]

Thank you all very much for your very helpful advice.  I didn't know that the hypo-thyroidism could be reversed - that's very encouraging.  I also had a viral panel done at the same time as the Western Blot which indicated I have ongoing EBV infection.  Somebody suggested that could affect the band 41.
In light of your answers, can I please ask some more questions?
I'm in Scotland; any recommendations for a LLDoctor in the UK or Europe?  I have had the BCA Clinic in Germany recommended to me.  My current doctor does know about Lyme obviously as they ordered the Western Blot test, but I'm not sure if they are enough of a specialist in it.  Following the Western Blot results above, they suggested I get an ELISA done to see what result it produced, but I don't think it was with antibiotics beforehand.
What antibiotics and dosage are given for the antibiotic challenge?  And which test would you follow the antibiotic challenge with - the Western Blot again or another one?
How do you know what co-infections to test for?  Does the doctor just decide that based on symptoms?
Many thanks again for your input.  After 20 years of it, I would dearly like to  get some improvement and want to make sure I do the right thing and not mess it up at this stage.

[Ricobord]

The forum leader on the SURVIVING NEUROLOGICAL LIMBOLAND user forum has been to the Breakspear Clinic in England.  You might post a message on that forum to get more information about LLMDs in the UK.  (Click on Forums, and then scroll all the way to the bottom to see the user run forums.). You can also Google "Breakspear Lyme" to find this particular clinic.

You might find more Europe specific information on lymeneteurope.org.

Regarding testing positive for EBV, many Lyme patients do, along with a handful of other viruses, mostly in the Herpes family.  Lyme is immunosuppressive, and over time, virus loads previously held in check by the immune system increase.  

Usually this results in the patient feeling even worse, as the patient is essentially suffering from Lyme and EBV/Mono/Glandular Fever at the same time.  Either one can make you miserable all by itself.  Some Lyme patients are incorrectly diagnosed with EBV and told there is not treatment.  My eary Lyme symptoms felt just like a bad case of Mono.

[JackieCalifornia]

You're very welcome --

I don't think I mentioned that my thyroid function also came back on line after I was treated for Lyme -- I found myself not sleeping well and then one night sitting up literally all night long because I couldn't go to sleep -- I had a big meeting the next day, and I cringe at thinking how incoherent I must have been!  I finally realized it was the thyroid supplements and gradually took myself off of them.  That was about 3 (?) years ago, and still fine without the supps.

I'm not sure about the EBV aspect -- I think Ricobord has some knowledge on this point?

I just searched on google for

                  lyme disease scotland

and got many interesting 'hits' -- but of course some of them will be the 'official' positions denying that Lyme is anything to be concerned about, tho a quick glance indicates there are many on the 'Yes, there is Lyme here' side, with some indicators of possible sources of finding a wise MD.

Also, searching

               "Lyme disease" UK

may give some useful links.  You could also try it without the "quotes", but I have found in the past that there are lots and lots of links to Lyme Regis.  :)   I just try different things to see what I get in return.  

On the right side of this page in the skinny column there is a series of boxes ... the second one down (at least on my screen) is a small box saying "search this community", and if you type in Scotland or UK, it will fetch up any past posts that include those words -- that might get you some ideas, or you might be able to send a private message to those posters, since I don't think we've had anyone from there post here for a while.

You could also search for BCA, since I think someone has mentioned them in the past here.  (That is the borellia center in Augsburg, yes?)  I also just searched on google for

              lyme augsburg

and got lots of interesting links, but don't think anyone who has been there is currently posting here, tho they may be monitoring quietly.  Another reason to search the old messages for 'augsburg'.

You remark:  "Following the Western Blot results above, they suggested I get an ELISA done to see what result it produced, but I don't think it was with antibiotics beforehand."  That's all right, my LLMD didn't give me antibiotics before testing, and I was quite positive, considering how long I had been ill.  Everyone is different, tho, and a Lyme specialist could best advise you based on your own history.  What antibiotics are used is also something the LLMD would determine.  There are few things about Lyme diagnosis and treatment that are 'standardized.'  You could look on ILADS [dot] org for Burrascano's treatment guidelines --- they ramble a good bit, but you can search them and the whole website for that matter for something like "antibiotic challenge" and see what pops up.

Yes, I think the W.blot/ELISA tests are sometimes done after an abx challenge, but perhaps more useful would be a PCR test done by IGeneX, which looks not for your immune system reaction to Lyme, but for direct evidence of Lyme bacteria DNA in your blood.  The IGeneX website has information on the test, I think.

You ask, "How do you know what co-infections to test for?  Does the doctor just decide that based on symptoms?"  All good questions.  Yes, it takes an experienced MD to know what test for.

Good for you for pursuing this, even (or especially!) after so many years.  Please let us know how things go -- best wishes!

[mojogal]

I tested negative on western blot but I was really sick at the time. My thyroid meds are less but started going down as well as other bad blood test results, after treatment and it will go to normal one day.
It's important to test for co- infections by an LLMD at IgenX because for many people that affects them more although the lines are blurred on which symptom is Lyme and which is the co-infection. I was treated with doxy for Lyme until my co-infection came back positive for Bart's and then we started treating the Bart's. I went from blindness episodes, not walking without a cane at all, muscle weakness to much improved with treatment. No more blindness, although I sometimes have problems reading, no more muscle weakness where I can't open the fridge....etc. it's not a fast cure but it does get better and eventually cured.
Good luck

[JackieCalifornia]

About testing:  my LLMD (well-known in the field) used IGeneX for Lyme PCR testing (a different kind of test, and more accurate, than Western blot/ELISA), but used other labs for other possible infections, including LabCorp and Quest, as I recall.  

The reason IGeneX gets a lot of mention is that they have a unique test for Lyme which nonLLMDs don't think is necessary, since they continue to rely on Wblot/ELISA.

[marcia135]

Many thanks again for your time in replying and for all the info.  So, my next step should be a PCR from Igenex?  And / or the ELISA?  (Reading the Igenex website, I can see why my doctor would say do the ELISA next, as Igenex seem to put quite an emphasis on it).  Would I have to do the antibiotic challenge for either of them?  Would that be enough at this stage or should I  test for co-infections at the same time?  
This is the tests they do at  BCA clinic at Augsburg:

www.bc-a.de/index.php?id=97&L=1-

I've tried to compare it with the Igenex website, but am not sure if their PCR is the same; BCA seem to do it for the co-infections.

Can the EBV be treated?  I thought there wasn't really any treatment for it.  Or will it improve itself if the Lyme is tackled?  Sorry for all the questions.

It's actually Breakspear that have done my first test for me at Igenex and suggested the ELISA.  But somebody recommended the BCA to me as Lyme specialists and I was quite impressed with their website.  I wonder if they might be a better bet for treatment.

[JackieCalifornia]

All good questions you pose.  These are fine differentiations beyond my knowledge, but others here may have some comments.  

(Rico?  Psst, Rico?  Paging Ricobord.)

There is a point past which a website isn't the best source of advice, tho.

[Ricobord]

IGeneX does have a good PCR test, but their Western Blot is also more advanced than other labs.  Others use only a single strain of Borrelia, whereas IGeneX uses two.  And a negative PCR doesn't exclude Lyme either.  I tested IGeneX positive on my WB, but my PCR test there was negative. It is a good thing I ordered the whole panel and not just the PCR.  I don't think an ELISA would be helpful for you at this point as neither a positive or a negative is definitive. It is normally the first step in the two tiered testing process with the more useful Western Blot being the 2nd step.

Regarding the Epstein Barr virus, I tested negative in my acute illness after 2-3 months, even though I was still sick for another 5-6 months. Then, when I had a relapse 5 years later, I couldn't shake it for 3 months and still tested negative. I had to quit working and do nothing for a month before I felt well again. (This was before the Lyme bug bit me.) My point is that most people only test positive on standard EBV tests when they are really sick with it.

I tested negative for EBV when I was quite ill with Lyme & Bartonella, but I know many other Lyme patients have tested positive for it, along with other viruses that take advantage of the suppressed immune system.. I seem to remember reading somewhere that you would only get an EBV cross reacting positive on a WB band if you had an acute case of EBV at the time. Sorry...I can't remember where I saw this.

I am guessing, in my very unscientific, nonmedical opinion, that you are testing negative for Lyme because you have had it for a long time.  But you are showing hints of it.

If I were in your shoes, I would first ask what the doctor thinks. I get the impression that some Lyme treating doctors tend to be conservative, as if anything goes wrong, there is a line of doctors willing to testify against them in a malpractice suit. If tests are inconclusive, they will often look for more indicators to support a diagnosis.  if your doctor just doesn't know what to do, then I would ask for a CD57 test and to start antibiotics.  

You have two Indeterminate results on Lyme specific bands (which some LLMDs consider significant), a long history, and symptoms.  Lyme is ultimately a clinical diagnosis and doesn't require an absolute positive test.

A low CD57 would be a strong indicator.  Either way on the CD57, you could then retest after a period of time on antibiotics to see if more antibodies have shown up or if you see a change in symptoms. If my doctor was willing to call it and start writing prescriptions, I would be on board.

Because I didn't need to do the antibiotic challenge, I don't know which one my doc would have used.  But I would guess Azithromycin, as that is the first drug they put most patients on.  

A big reminder on this whole post...I am not a doctor, only a patient who reads a lot.

[marcia135]

One last question for those who were hypothyroid - did you have thyroid antibodies?  I have high levels of thyroid peroxidase antibodies, Hashimotos, I suppose.

Many thanks to you all again, for your time and all your help.  You have given me plenty to think about and research for the time being.  As to your disclaimer Ricobord - by this stage, I have far more faith in the patients than I do in the doctors ;-) !  I will let you know how I get on.  You've been very kind, thank you  :-)

[Ricobord]

I am also convinced that most late stage Lyme patients know more about Lyme than the vast majority of doctors. I think because doctors know so little and we have struggled so much with this disease(s) that we are motivated to learn more. It was another Lymie who helped draw my attention to Lyme as a possibility.  We patients have to help each other out!

[mojogal]

I was told I had hoshimotos but it is improving with treatment so it's all going to improve with treatment.

[marcia135]

That's very encouraging to hear, mojogal.  Best wishes for your continuing improvement.
I quite agree Ricobord.  It's the case for a lot of these illnesses, like ME, that are neglected by the medical profession.  My GP is unable to understand why I'm frustrated when he says, after 20 years of illness, that I "just" have post-viral fatigue.
Obviously it depends on the individual case, but how long can treatment take?

[JackieCalifornia]

re hypothyroidism ... it wasn't obvious to anyone (even my LLMD) that is what I had, but another doc (not so focussed on Lyme) figured it out as my Lyme treatment was ending and put me on thyroid supplements.  It was great for a month or so, until for reasons I do not know, my own thyroid woke up and kicked in.  

I was so wired I couldn't sleep one night, but also was not wide awake. It was very strange.  I had a big meeting the next day and was a total idiot, couldn't keep a thought in my head long enough to get the words out, much less remember what others were saying.  Surreal.

I stopped taking the thyroid meds all at once (as you're not supposed to do) and was fine within a couple of days.  Haven't taken any since, and haven't needed them.

About duration of Lyme treatment -- the standard answer is 'it depends'  -- on what co-infections you have, how strong your immune system is, how your body reacts to the various meds .... and other mysterious things I'm sure no one has yet figured out.  

I had Lyme and babesia, and was on antibiotics about a year and a half, as I recall ... mine was a relatively recent infection, it seemed (about a year of being miserable and useless at work), and my initial test results on the basic W.blot/ELISA tests showed a surprisingly strong immune system response even that long after infection, a response level which not everyone produces.  Again, it's all individual for reasons not yet unraveled.

With the right doc, the right tests, and the right meds, it's certainly worth the effort, even not knowing how long improvement will take.  Sleep and good nutrition are important as well, and tho my LLMD didn't care about vitamins etc., I got very serious about supplements etc. and still take them.

Even the best LLMDs get stumped once in a while and can't figure out why a patient isn't improving, and if you reach that point with a doc, then a second opinion from another LLMD may be in order ... but no need to worry about that now.  Read as much as you can to learn about Lyme and its tricks -- knowledge IS power.

[mojogal]

Thank you.
Jackie's case is a good example of how different we all are. After 18 yrs since my first tick bite that I know of, all my blood tests were abnormal including thyroid but I know many people who showed no abnormality and were suggested to go to shrinks who then told them its all in their heads. How frustrating is that?

[marcia135]

I'm certainly much better informed about Lyme now than I was a few days ago, thanks very much to you all.  I will keep researching and get on the case.  Can I get back to you if more questions arise?

[Ricobord]

Most certainly!

[mojogal]

Anytime!

[marcia135]

Hi again,
I eventually got more tests done, results below.  Looks like I do indeed have Borrelia, Ehrlichia/Anaplasma and Chlamydia pneumoniae.  Not sure if I need to get a Bartonella PCR to confirm or deny that.  Any comments on these results?  

Borrelia burgdorferi Elispot LTT    Results Units Reference
Borrelia burdg. Fully Antigen          +3            SI         <2
Borrelia OSP-Mix (OSPA/OSPC/DbpA   +7 SI <2
Borrelia LFA-1                1 SI <2

The results of the Elispot-Lymphocyte-Transformation-Tests are an indication for an actual cellular activity against Borrelia burgdorferi.

Chlam. Pneum. IgG antibodies (ELISA) 0.2 Ratio 1.1=pos
Chlam. Pneum. IgA anitbodies (ELISA) 0.1 Ratio 1.1pos

The specific Chlamydia pneumoniae IgG and IgA antibodies are no indication for a humoral immune response against Chlamydia pneumoniae.  Please look at the Chlamydia Elispot LTT for the actual cellular activity.

Chlamydia pneumoniae Elispot LTT +15 SI <2

The result fo the Elispot-Lymphocyte-Transformation-Test (LTT) is an indication for an actual cellular activity against Chlamydia pneumoniae.

Mycoplasma pneumoniae IgG (EIA) +1.0 Ratio 1.1=pos
Mycoplasma pneumoniae IgM (EIA) 0.2 Ratio 1.1=pos
Mycoplasma pneumoniae IgA (EIA) 0.2 Ratio 1.1=pos

The specific M pneumoniae IgG antibodies are an indicationf for a borderline humoral immune response against Mycoplasma pneumoniae.

Bartonella henselae IgG IFT <1:64 Titer <1:64
Bartonella Quintana IgG IFT <1:64 Titer <1:64

Serological no evidence for an infection with Bartonella henselae or Bartonella Quintana

Anaplasma phagocytophilum IgG antibodies <1:64 <1:64
Anaplasma phafocytophilum IgM antibodies <1:20 <1:20

No serological evidence for an infection with Anaplasma.  Please look at the Ehrlichia / Anaplasma Elispot LTT for the actual cellular activity.

Ehrlichia / Anaplasma Elispot LTT +18 SI         <2

The result of the Elispot Lymphocyte Transformation Test is an indication for an actual cellular activity against Ehrlichia / Anaplasma.

C reactive protein (CRP) 0.2 mg/l <5

Anti Nuclear Antibodies
ANA (EIA) 0.39 Ratio <1.0

Included are auto-antibodies (IgG) against the following antigens:  Chromatin (dsDNA, Histones), Sm/RNP, SS-A, SS-B, Scl-70, Centromer, PCNA, Jo-1, Mitochondria (M2), Ribosomes, nuclear extracts.  There is no evidence for antinuclear antibodies.

CD 57 Flow Cytometry

Leucocytes 5.15 tsd/ul 4 - 10
Peripheral lymphocytes 30.10 % 18.0 - 51.0
Lymphocytes 1550      /ul 468 - 5100
Natural killer cells 10.19 % 6 - 29
Natural killer cells 158      /ul 60 - 700
CD 57 positive NK cells 0.77 % 2 - 77
CD 57 positive NK cells 12 /ul 100 - 360

The CD 57 cell count is an indication for a chronic immune-suppressive situation caused by Borrelia burgdorferi.

[mojogal]

Bartonella like many Co's don't always show positive but your LLMD should be able to treat based on symptoms alone.

Bart's was the only Co that was positive for me but I also had Babesia and mycoplasma. Those we are treating on their symptoms alone.