Persistent Borrelia Infection in Patients with Ongoing Symptoms of Lyme Disease, Middelveen et al, 2018

" Healthcare (Basel). 2018 Apr 14;6(2). pii: E33. doi: 10.3390/healthcare6020033.
Persistent Borrelia Infection in Patients with Ongoing Symptoms of Lyme Disease.
Middelveen MJ1, Sapi E2, Burke J3, Filush KR4, Franco A5, Fesler MC6, Stricker RB7.

....

CONCLUSIONS:
Using multiple corroborative detection methods, we showed that patients with persistent Lyme disease symptoms may have ongoing spirochetal infection despite antibiotic treatment, similar to findings in non-human primates. The optimal treatment for persistent Borrelia infection remains to be determined."


Abstract on PubMed and full article. Please alert me if this article has been posted before. The result of this small study points to what many patients with Lyme , with or without ME/CFS, have suspected for years.

 

Cultures were done histopathologically (hello Lipkin), and tested against what I believe were three discrete PCR metrics and with at least one independent lab. This will be hard to counter.

The usual subjects, though, were authors. They will get nailed for that.

 

@Hutan , just as the IDSA (in the US) has a tight group of authors whose name seem to appear on Lyme studies almost regularly, so too does its TBD counterpart, ILADS. In fact, when you see Stricker and Middleveen and Sapi, it is pretty much an easy call to guess the direction of the given study, no less than if you saw IDSA signatures like Wormser or Shapiro or Steere atop a paper.

Yes, they have been banging away at proving Lyme can persist after treatment. They have been making steady headway. Among the growing ILADS movement, they are highly regarded. Outside of it, at times they can be subject to criticism. This is to be expected; the polemics in the Lyme wars are legendary, and entire PR campaigns have been erected around just a single player, let alone a broad scientific/marketing platform.

 

I was particularly interested in their results as they used dark field microscopy that have been dismissed by many through the years. Here they clearly found spirochetes.

"8 mL tubes of inoculated medium were filled to minimize the airspace present, thus providing a microaerobic environment, and incubated at 32 °C. Culture fluid was examined by darkfield microscopy for visible spirochetes weekly for up to 4 weeks."

A doctor in Europe examined the blood of a woman who told me the following. The doctor saved the sample between the glass sheets that normally are used for microscopes for 24 hours. Then she video-recorded the sample in dark field microscopy with her mobile and sent it to the patient. It clearly showed spirochetes.

Sadly this study shows that spirochetes can be found in vaginal culture which implies that Lyme is contagious without tick bites.

"Case 11. Vaginal culture was performed and fluid from the culture demonstrated spirochetes, including one that was quite actively motile, under darkfield microscopy. Dieterle staining and anti-Bb immunostaining demonstrated spirochetes."

Also spirochetes were found in skin samples. I assume research in Borrelia infections should finally be taken seriously, as well as the symtoms from the infections. The claim that the infection is cured after some weeks on Doxyferm in all cases should be considered fake news based on the results in this study. It should be rather easy to confirm, or even dismiss, the results by other researchers.

 

Agreed. Moreover, some of those spirochetes were found in tissue, and were cross-checked against 3 PCRs from 3 independent labs. They even had the imprimatur of Alan Barbour, which is very impressive.

Compound these findings with Bb persistence demonstrated in vitro following standard abx regimens by three discrete and highly regarded academic institutions, and with all the primate (think Monica Embers at Tulane, for example) and other animal studies that clearly speak to continued Lyme presence after antibiotics, and it's easy to see why many believe that those who argue against persistence have problems.

 

I find that very interesting. Thanks @Helen for pointing to the publication and to the others for the discussion. I am curious about more.

 

You surely know, but others maybe not, that Dr. Eva Sapi got a Lyme infection and realized that diagnostics and treatment were so bad, so she changed her career into this research. She seems devoted to it, and I´m grateful she is.

Sapi and her group also found that Stevia ( yes, the herbal sweetener) breaks down the biofilm that the bacterias produce to protect themselves from being killed off by e.g. antibiotics.

 

Yes, she's a total hero!

 

She is also just a classy person. Lots of the hardcore Lyme researchers are. I reached out to her once about treatment, and she didn't know me, and she is no clinician, but she was caring and inquisitive and, ultimately, helpful - without ever once overstepping her bounds as a researcher.

You know, some say Willy Burgdorfer contracted Lyme, too. That is truly a disquieting tale if accurate, because of the diagnosis and its subsequent reversal (if I recall correctly), but it's hard to say for sure now that he has died.

Albeit relatively short, Lyme history is full of the extraordinary, both in terms of incidents and character.

 

It would be interesting to know whether these Lyme patients in the study, confirmed to have a chronic Borrelia infection by multiple detection methods, tested positive on the standard CDC-recommended two-tier Lyme test.

If they did test positive on the CDC test, then it would provide some supportive evidence that the CDC test is adequate for detecting chronic Lyme; conversely, if some tested negative, that would suggest some patients with chronic Lyme are not being detected by the CDC test.

 

@Hip , yes indeed it would be interesting with a trial for validation of the available Lyme tests as visible spirochetes are indisputable. I assume we could expect that the Sapi group thought of that as well, and that will be their next step.

 

According to the authors, 10 of the 12 culture positives were positive on either an IgM or IgG Western Blot (Table 2). Not sure about the ELISA; that data might be folded into the case studies. Moreover, I'm not sure if these are Dearborn bands, ie, I'm not sure if these comply with the 10 bands selected by the CDC ( for instance, bands 31 and/or 34 may have been used per IGeneX criteria)

There might be pushback against the IgM positives, I'm guessing, based on past avenues of attack. IDSA Guideline supporters usually waste little time decrying IgM results in late stage or chronic cases, as that runs counter-intuitive - this despite antigenic variation that can generate IgM responses in long-standing cases. I am unclear when the serologic testing occurred, and obviously this matters, but I get the sense that if IGeneX were involved in all serologic testing, that it was done for the study, and they aren't just alluding to testing done clinically at time of diagnosis.

I keep waiting for a response to challenge these findings, but if it has come out yet, then I've missed it. They may wait till the new Guidelines surface; these have been rescheduled - last I checked - for the coming Fall.

Even if these subjects did test CDC positive on the 2T (and apparently at least two did not), we know that there are many cases of active infection which are not recognized by the 2T.

 

This is all very interesting to me. Finished 18 months of abx a year ago, gut issues and joint issues are greatly resolved but fatigue and sore throats etc are relentless and crushing. Has anyone any info on how you would know if you had ME Cfs as well as the Lyme. Thanks for posting the article and for the posts. It was helpful to read.

 

@Starlight , in theory you could have both. I have been diagnosed with both.

But there is no way to definitively prove it. Not yet at least. There are clues, though. For example, PEM is fairly peculiar to ME/CFS. Odds are if you suffer from PEM you've got ME/CFS. Joint pain without swelling is more ME/CFS. There are other examples (CPET results etc). The point is, if you look to symptom differences you may find indicators.

Obviously on the Lyme side you can dip into various diagnostics, but I'm sure you are familiar with the pros and cons of that process.

 

Thanks Duncan, I have been diagnosed with both,by different doctors. I see many in my Lyme group responding differently to the abx. Many are able to go out regularly and don't seem to have the same level of PEM. Some are even back at work. I'm totally housebound , hours in bed daily and can do very little. It is confusing. When diagnosed. With Lyme and Co infections and given a script for abx. I thought I might have the answer but it wasn't so. The above research is good to see. I wonder if that is what is causing post Lyme disease treatment syndrome or is that something separate or anything at all.. Hope some definitive answers in both areas come soon.