Debates on ME in Dutch Parliament May 14; & Lyme May 15

[paolo]

Given that many ME/CFS patients have chronic reactivations of herpes family viruses, might this make them prone to false positive Lyme tests?

In Western Blot for borrelia there are many bands which are specific for borrelia. There is not known cross-reaction with other pathogens for these bands. When you have positivity in these specific bands in your Western Blot, either in IgM or in IgG, there is clearly a borrelia infection. This is because these bands are specific only for borrelia, as far as we know.

In Western Blot some cases of false negative are documented. According to Sam Donta (Boston University) you have a 30% of seronegative Lyme patients, when you deal with chronic infection.

PCR for borrelia is also highly specific, there are no false positive. PCR has a very high specificity and a low sensitivity, expecially in blood; this is due to the fact that borrelia hides in tissues, so you can't find it in the blood stream, but for the first days from the infection.

For LTT I don't know of any proof of cross reactivity, at present. But I guess that this test needs further studies.

 

[duncan]

Paolo, a slight correction, if you don't mind: You can, supposedly, register a false positive with PCR testing. PCR is sensitive enough to pick up Bb debri, and it is argued by some that many PCR positives, post-treatment, are merely remnants of Borrelia, and not viable spirochetes at all.

In such cases, a positive PCR reading - theoretically - would indicate only prior exposure and not active infection.

I'm not keen on this theory, and I cannot vouch for its validity, but it's out there, and embraced by some of the IDSA gang.

 

[paolo]

Paolo, a slight correction, if you don't mind: You can, supposedly, register a false positive with PCR testing. PCR is sensitive enough to pick up Bb debri, and it is argued by some that many PCR positives, post-treatment, are merely remnants of Borrelia, and not viable spirochetes at all.

In such cases, a positive PCR reading - theoretically - would indicate only prior exposure and not active infection.

I'm not keen on this theory, and I cannot vouch for its validity, but it's out there, and embraced by some of the IDSA gang.

Thanks Duncan, very intersting. But I wonder how long DNA can survive in blood, outside a living envelope. I don't know.

Let's say that even if my PCR is the proof of a previous infection, that was a seronegative infection, because it didn't leave behind any IgG (my Western Blot is negative).
One can still say that IgG did disappear some years after the infection was cleared. But if it is the case, we should assume that borrelia DNA has survived in my body longer than my IgG. Is it possible?

My own physician does consider my positive PCR, along with the clinical picture, a proof of ongoing infection.

Maybe they tested me for borrelia RNA, too. I will ask.

Another detail I can add on my own case is that the PCR was detected before I did any antibiotic treatment. After treatment the PCR was negative. But a blood negative PCR can't be a proof that there is no lnger the infection, as I mentioned.

 

[duncan]

Among many Lyme patients, there is a tacit corollary to the rule that Lyme is a clinical diagnosis: There is no such thing as a false positive.

The reason behind this is the contempt we have for the parameters that govern many current diagnostics. Of course, there can be, and are, false positives.

It is the rate of false negatives, however, compounded by the severity of illness they can result in, and the subsequent denigrating medical experiences they frequently give rise to, that arguably should be cause for greater concern - or at least, that is how many see it.

I tend to agree with you and your physician, based on your description. I only offered up that false positive observation because this is a challenge some of the key IDSA people would possibly put forth.

 

[Hip]

No, the the cross-reacting one is IgM, and that's the one which should be negative with EBV reactivation. Unless our immune systems are doing something really whacky

Ah OK, I did not realize that it was only the herpes family virus IgM antibodies that can cause a cross reaction to the Lyme test.



I wonder what percentage of De Meirleir's "ME/CFS" patients from low Lyme risk countries/regions are positive for Lyme, compared to the percentage from high Lyme risk countries.

If we assume that De Meirleir is actually treating a mix of true ME patients (ie, Lyme negative) and Lyme disease patients, then the ratio of his ME patients / Lyme patients would presumably vary according to the country/region the patients live in.

However, if that ratio did not vary much between low and high risk regions, it would suggest that the Lyme test De Meirleir is using is producing spurious results.

It would be easy enough for De Meirleir to check this, as he should have the home address of each of his patients.



I can't find a decent European map indicating Lyme disease incidence, but this is a good map for the US incidence of Lyme (and if you run through these US maps from 2001 to 2013, you see this incidence, or at least the detection rate, is certainly increasing).

A map of Lyme disease incidence in Begium can be found here; see fig (b). The map comes from this study.

 

[Valentijn]

I wonder what percentage of De Meirleir's "ME/CFS" patients from low Lyme risk countries/regions are positive for Lyme, compared to the percentage from high Lyme risk countries.

The Netherlands is very high risk. I'd assume Belgium is pretty similar.

 

[A.B.]

My mom trained as biologist and did work on tick borne diseases, undoubtedly getting bitten repeatedly while collecting ticks in the woods in Austria. She slowly became ill with a mystery disease resembling CFS, had to quit work. Many years later she still hasn't fully recovered, and now both her sons also developed something similar. Nobody else in the family has this.

Is it possible that there is some subtle chronic tick borne disease that can be transmitted from mother to children?

 

[Valentijn]

Is it possible that there is some subtle chronic tick borne disease that can be transmitted from mother to children?

Probably. They can carry so many infections, that I would be a bit surprised if at least some weren't transmittable in utero.

Midichloria Mitochondrii is a pretty recently discovered bacteria which resides in the mitochondria of the ovaries of all females of at least some types of ticks, so it does sound like it gets passed between generations of that species, rather than coming from feeding. Perhaps it can do something similar in humans.

But mitochondrial DNA is also passed directly from mother to children, and can include some mutations which trigger or predispose them to various adult-onset diseases.

 

[duncan]

Transovarial transmission of Bb within ticks is still debated. But transovarial transmission within ticks of B miyamotoi has been established.

What works for one species of Borrelia does not necessarily hold true for another. Still, it does cast an older debate in a different light.

This is, of course, different than passing Borrelia between humans - which also is a somewhat debated area. But I just thought I'd volunteer it here anyway.

 

[Valentijn]

This is, of course, different than passing Borrelia between humans - which also is a somewhat debated area. But I just thought I'd volunteer it here anyway.

Duh, can't believe I forgot. Even the CDC says it's a problem for fetuses, albeit presumably curable by a short course of antibiotics:

Untreated, Lyme disease can be dangerous to your unborn child. Lyme disease that goes untreated can also cause you to have brain, nerve, spinal cord, and heart problems. With early treatment, these complications can be prevented. If you suspect that you may have Lyme disease, see your physician.

www.cdc.gov/lyme/resources/toolkit/factsheets/10_508_Lyme%20disease_PregnantWoman_FACTSheet.pdf