Got lab results - help me with interpretation please

[Markus83]

I got a part of my lab results right now.

I have very high titers for Chlamydia pneumoniae and borderline for Lyme disease. So that's why I'm on antibiotics which definitively make a difference. I'm not sure however if viruses are also a problem.

HSV1 and HSV2 tested negative for IgG/IgM/IgA. So I think I can rule that out.

HHV6 came back negative for IgM and IgG positve 1:50 (reference < 1:10). I'm not sure what to do with that.

Parvo came back IgM negative and IgG positve (Elisa 7.9, normal < 0.9). Wester blot IgG bands found: VP-2p, VP-N, VP-1S, VP-2r, NS1. The lab states: "NS1 band positive. Chronic persistent or past infection. To rule out chronic persistend infection PCR of blood serum recommended."

I don't know what to do with that either. 2015 I had also very high IgG-titer against parvo in another lab (144 U, normal < 3 U).

In about 10 days, I will get my results for CMV and EBV, too.

 

[Hip]

Coxsackievirus B and echovirus are also important tests in ME/CFS, but only antibody tests by the neutralization method, such as the ARUP lab tests, are sensitive enough.

EIDT: whoops, I already mentioned this to you — I've a terrible memory.

 

[Markus83]

I skipped the test because I don't know a lab in Germany which offers the correct test. Would there be a treatment option for Coxsackie and echovirus?

I did a little reseach in pubmed in the meantime and it seems that the NS1-band might point to a chronic parvo infection (only 20 % of healty people have this band vs. 80 % with chronic infection). I hate it. I have so many chronic infections documented that I don't know where to start and what to do ...

Does someone know what the reference level for IgG is in the lab where Montoya et al. sent their patientes blood in their study? As far as I can remember, they considered >= 1: 320 as high. But I think it is another testkit like the one my lab used.

 

[Hip]

Would there be a treatment option for Coxsackie and echovirus?

Yes, oxymatrine, that's why it's worth testing for enterovirus. Although you can always try oxymatrine without being tested, on the assumption that you might have active enterovirus infection; that's what I did, because I could not find an antibody neutralization test.

 

[Markus83]

Is oxymatrine a regular prescription medication or a supplement? Never heard of that...

 

[Hip]

It is a supplement which you can buy online without prescription.

 

[Malea]

Hi @Markus83, I think we know each other from another forum.

You can test Coxsackie B at IMD. (I did that and it came back positive)

Where did you test the parvo virus?

(And I think Hip mentioned in another thread, that oxymatrine possibly isn‘t a good idea when there‘s autoimmune stuff going on. Not sure if that is a topic for you.)

 

[Hip]

You can test Coxsackie B at IMD. (I did that and it came back positive)

You can, but I think their range of enterovirus tests is limited: correct me if I am wrong, but I believe IMD only offer CVB2, CVB4, CVB5 and echovirus 6.

Whereas ARUP Lab tests for all six CVBs (B1 to B6), and for several echoviruses.

Also, I am not sure which antibody testing method IMD uses: neutralization is the gold standard and most sensitive, whereas methods like ELISA or IFA may not be sensitive enough for the low-level chronic infections found in ME/CFS. The CFT method is useless for chronic infections.


Dr Chia finds that the most common enteroviruses that are active in ME/CFS are:

• CVB3 and CVB4 first and foremost

• Then CVB2, EV6, EV7 and EV9

• And then much less EV11.

 

[Malea]

You can, but I think their range of enterovirus tests is limited: correct me if I am wrong, but I believe IMD only offer CVB2, CVB4, CVB5 and echovirus 6.

That‘s right and also Echovirus30. (And Coxsackie A7 and A16).

I had look at my report and they used different testing methods. Neutralisation for the Coxsackie B2, B4 and B5. IFT for the A6 and A17. (I had positive results with both methods, but didn‘t test for Echovirus)

I know that Arup Lab is probably the better option. But as Markus is located in Germany and sending a sample abroad is difficult and expensive I thought that the IMD is worth to be mentioned.

 

[Hip]

I had look at my report and they used different testing methods. Neutralisation for the Coxsackie B2, B4 and B5. IFT for the A6 and A17. (I had positive results with both methods, but didn‘t test for Echovirus)

That's fine then, if they use antibody neutralization for testing CVB2, CVB4 an CVB5. That will be as good as ARUP Lab I should think. The only issue is that you will not have CVB3 covered, which is a common active infection in ME/CFS.

Coxsackievirus A is not involved in ME/CFS, so no need to test for CVA. Just CVB and echovirus, for ME/CFS purposes.


You can also get full coxsackievirus B1 to B6 antibody testing by the neutralization method at the Hellenic Pasteur Institute in Greece.

 

[Wonkmonk]

Chlamydia pneumoniae and borderline for Lyme disease. So that's why I'm on antibiotics

What antibiotics are you getting and what dose?

 

[Markus83]

What antibiotics are you getting and what dose?

Minocycline (since 3 months, 200 mg a day) and pulsing with Tinidazole (2x500 mg a day but not longer than 10 days in a row) and Ceftriaxone (since a few weeks, 4 g a day on 4 days a week). It works definitively, because in the 4-day pulses with high dose ceftriaxone I'm feeling better, but one or two days later all symptoms come back heavily. So I'm not sure if other infections (like viruses) are also a problem; sadly most antibiotics have a negative effect on the immune system and maybe make virus infections flourish.

I have a bit of sore throat most time of the day. This might come from Chlamydia, but maybe also from a virus.

In the meantime I found a study investigating Pervo serology in healthy indivuals (n = 200) and CFS patientes (n = 200). They found that 7 % of healty individuals have the NS1 band in IgG Western Blot, but more than 40 % of CFS patients: https://www.ncbi.nlm.nih.gov/pubmed/20007355

 

[Wonkmonk]

This is from Dr Lerner on Lyme:

"Lyme and Lyme co-infections can be elusive. Lyme disease can present clinically as ME/CFS. A significant portion of Lyme disease cases have negative Lyme serologic tests. We prefer Lab Corp for Lyme testing and use all 4 tests. The antigens used are those used by the CDC. An appropriate rural exposure, a tick bite, a bull’s eye rash, can all add to the likelihood of Lyme disease. Due to the need for both clinical and diagnostic evaluation in Lyme disease, it is recommended to consider an Equivocal (not negative or positive) lab result, as positive and begin Lyme treatment. "

http://www.treatmentcenterforcfs.com/documents/mecfstreatmentresourceguideforpractitioners.pdf

So it's probably justified to try ABs with your borderline positive Lyme serology. Is the Ceftriaxone IV or oral? Either way, the cocktail you are using should be very effective against Lyme.

However, it is not certain that your feeling better comes from the antibacterial effect. I think there are reports here of people improving with azithromycin even without evidence of bacterial infection. Immunomodulation, other antimicrobial effects or changes in the microbiome could all be reasons for why one might think an antibiotic is helping other than killing bacteria. And of course the possibility of a placebo effect can not be ruled out entirely.

Given that chronic bacterial infections usually don't involve fast replication of the bacteria, it is very strange that the symptoms come back so quickly after you are getting better from the antibiotics. If the antibacterial effect were the reason, one would probably expect the recovery to last longer.

I also had several weeks of IV antibiotics and I also thought it was making me feel a bit better in the beginning. But today my doctor and I both think there never was a bacterial infection that warranted treatment (we still had to try in order to know if it helps). I believe my getting better was from one of the reasons cited above and not from the antibacterial effect.

 

[Markus83]

Ceftriaxon is only available iv. But it's not very effective in chronic cases, there are several studies about that, for example by Brian Fallon. Anyway, given as combination maybe it's worth a try. My sickness lasts at least 15 years, so I'm pretty sure (even if Lyme would have been the trigger) that now there are a bunch of chronic infections which have to be treated. I had 3 months of iv doxycycline in 2011. That definitively helped me a lot. So at least in 2011 some chronic bacterial infections had to be a significant problem.

Now lets see how my EBV and CMV results come back next week. Maybe this gives new information. What do you think about my HHV-6 serology? If the reference range in Montoyas lab would be < 1:20 (I don't know for sure if thats the case) and he considers 1:320 as a hint for active infection, then my 1:50 titer (given the reference range < 1:10 in my lab) should not be the problem. If I just transfer my result to the reference range of Montoyas lab (x 2) I would come uo with 1:100 which would be fine. However, I don't know if that is allowed to calculate in that way?

The lab has "+++" beside the 1:50 titer, which seems for me that the lab thinks it's highly elevated. But it's speculative and I think I will check the HHV-6 again in another lab, if you know a german lab where I can apply the Montoya scheme on their results?

 

[Wonkmonk]

I'm not an expert in serology, but I also think 1:50 doesn't indicate that HHV6 is a problem. I have 1:32 and the normal range is <1:16 in my lab and my doc and I treat this as unsuspicious.

The "normal" range here isn't exactly a normal range, it is the cutoff where you treat the virus as entirely negative. So the "normal range" for people who are positive is probably a lot higher than 1:20. And your 1:50 doesn't seem very high. Even 1:100 wouldn't be high enough in my opinion to say it's an active infection.

Btw that's good news, because it means you might not need Valgancyclovir which is expensive and has lots of side effects.

Wouldn't it be an option to try doxy again and if it helps again just keep doing it for as long as possible?

 

[Markus83]

I got my complete results now:

EBV was completely negative, this is surprising: VCA IgG/IgM, EBNA1-IgG, EA-IgG all negative. So I think I can definitvely rule out EBV.

CMV IgM negative, IgG borderline 19,6 (< 12: negative; 12-30 borderline; > 30 positive). I think I can rule out CMV aswell.

HHV6 IgM negativ, IgG 1:160 (normal < 1:20). This might be a suspect titer. I have to look up what Lerner and Montoya write. Dr. Bieger says in a video, that 1:160 is common. So maybe it's not a problem. What do you think?

HHV7 IgG 1:16, IgM 1:16 with normal < 1:16. I don't know what to do with this result, because the titers are so low.

What I've written above already: HSV1+2 were completely negative.

So in my opinion what I can definitively rule out is HSV1, HSV2, EBV and most probably CMV. HHV6 and HHV7 are a bit suspect, also Parvo which I have the NS1 band in the IgG Blot. I think I'll check PCR for parvo. If it's positive maybe my insurrance would pay for IVIG.

Given that my IgG for Chlamydia pneumoniae was 450 (normal < 22) and IgA was 50 (normal < 22) together with my borderline lyme serology, I think I would stay on antibiotics and maybe try to add Azithromycin also.

Would be interested what you think about my serology results.

 

[Wonkmonk]

EBV was completely negative

Wow, you're the one in 100. That means, compared to almost everyone else, you have a much lower risk for a whole host of nasty diseases like multiple sclerosis, B-cell carcinoma etc.

On the other hand, you are at risk of contracting first infection and developing mononucleosis, which so late in life can have more complications and can also be a trigger for CFS (I don't know if you can get CFS on top of already existing CFS and make it even worse). Assuming 83 is your date of birth, you're the second case in this forum to be EBV negative so late in life. The second one I've seen is @Gingergrrl, and in her case, the late EBV infection is suspected to have contributed or triggered the CFS.

If I were still EBV negative, I'd think about prophylactic Valacyclovir in situations in which there is a risk of contracting EBV (e.g. having a new partner). In the case of herpes simplex, I think there is evidence that initial infections are milder if the patient is on (Val)acyclovir.

Regarding the other viruses: It doesn't look like any herpesvirus is a big problem. Can't comment on parvo, but it may be the case that your CFS is entirely driven by bacteria. The serology suggests this is the main problem and you improved on doxycycline previously, so there is some evidence for bacterial involvement.

Regarding parvo, you can't do much anyway (EDIT: IVIG might be an effective option, see @Hip's later post), except perhaps trying oxymatrine/equilibrant. Monolaurin might also be an option (also for the bacteria), but some report getting worse on it.

 

[Gingergrrl]

Assuming 83 is your date of birth, you're the second case in this forum to be EBV negative so late in life. The second one I've seen is @Gingergrrl, and in her case, the late EBV infection is suspected to have contributed or triggered the CFS.

I was 100% completely EBV negative on all tests until I got Mono from EBV at age 41 (six years ago) following a minor surgery. How I evaded it for 41 years is beyond me and I had a very severe case of Mono (like you said).

I am still 100% negative on all tests for CMV to this day. I am IgG+ on the other ones (HHV-6, Parvo, etc). I remained IgM+ for EBV (and oddly also for VZV) for 3-4 years post Mono. Then I shifted from viral into autoimmune chaos for whatever it’s worth.

Edited to add: Because I have now done almost 2 years of IVIG, we cannot test my antibody levels b/c they are no longer accurate until I stop IVIG for several months.

 

[Hip]

Wow, you're the one in 100.

Around 1 in 10 are seronegative for EBV; the prevalence of EBV in adults is something like 90%.


What's rare is finding someone who is seronegative for HHV-6, as almost 100% of the adult population have this virus (even by the age of 2, 80% of infants will have already acquired HHV-6).

HHV-7 is found in 98% of adults, cytomegalovirus in 58%, parvovirus B19 in 61%, herpes simplex I in 54%, and herpes simplex II in 16% of adults.

55% of the adult population are seropositive for coxsackievirus B (ie, they produce IgG antibodies to one or more of the 6 Coxsackie B viruses).

 

[Gingergrrl]

@Hip, it is amazing that you know all of these statistics re: the different viruses!

Around 1 in 10 are seronegative for EBV; the prevalence of EBV in adults is something like 90%.

I guess I was the 1 in 10 who was seronegative for EBV until 2012 (age 41) when I got severe mono from EBV.

What's rare is finding someone who is seronegative for HHV-6, as almost 100% of the adult population have this virus (even by the age of 2, 80% of infants will have already acquired HHV-6).

That's what I thought and I was IgG+ for HHV-6 and assume that I had it as a young child.

HHV-7 is found in 98% of adults, cytomegalovirus in 58%, parvovirus B19 in 61%, herpes simplex I in 54%, and herpes simplex II in 16% of adults.

I was IgG+ for most of these but remain seronegative for CMV.

55% of the adult population are seropositive for coxsackievirus B (ie, they produce IgG antibodies to one or more of the 6 Coxsackie B viruses).

This still confuses me (IgG+ vs. IgM+ for enteroviruses). I was positive (with ARUP lab) for CB4 and EV11 in 2014, and on re-test in 2015, but the titers were never as high as 1:320 which Dr. Chia considers an active infection (or I assume as comparable to IgM+)? My guess is that I became positive for these as a child as well.