Is a Positive PCR for Borellia reliable?

Had positive for a band of Borrelia, and it was done by PCR? I've looked up how accurate PCR is and see conflicting answers. I trust the doctor but wonder what other's experience has been.

WalkingbyFaith said...
What lab?

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I have always thought PCR which looks for DNA is 100% accurate if it’s positive. The controversy that I am aware of is regarding this particular lab, as they did not do validation testing.

yep. for any test you really need to know the sensitivity and specificity ( or the false-positive rate and the false-negative rate)

and really these should be validated by independent 3rd party testing ( as is supposed to be done by all labs used by our NHS ) - however, no lab that I know of actually does this for Lyme tests so we are stuck with this model where labs can market just about any test they like without having to PROVE that it actually works as they say.

( presumably, because there will always be enough desperate people who will pay anyway - just for the chance of getting a diagnosis that will help them out of the horrible health issue they are going through)

The closest we usually get to this is that the lab publishes a paper in one of the peer-reviewed journals detailing how well they think the test works. But the peer review typically does nothing to validate the data used to make their claims or try to repeat the work using the methods - instead it focusses more on how the paper is written. so we don't really know anything about the veracity of the work.

typically with all Lyme tests though - sensitivity is the biggest problem ( ie detecting borrelia when it is present ) and so positive results, when they do occur, are usually very likely to be true positives

running wild said...
Had positive for a band of Borrelia, and it was done by PCR? I've looked up how accurate PCR is and see conflicting answers. I trust the doctor but wonder what other's experience has been.

What I've been told (a few times) that a PCR detects the dna of the bacteria in the blood. A positive is positive...
A Western Blot shows a response via antibodies. We can continue to have antibodies even after active infection isn't there anymore...ie if we're in remission.
That is why a WB can't be used to determine if we're in remission.

And a pcr - if it's negative - it may be that the relatively small sample didn't have any dna of bacteria in it.
So, it could be a false negative.

that's an interesting Test and thank you for the document link.

if it works as it is supposed to it should be one of the most sensitive tests out there.

in terms of its accuracy, the makers really need to publish something along those lines in a peer-reviewed journal.

it seems according to the document link that they are preparing to do so and also to try to demonstrate its effectiveness in testing urine also - which if it works could be a useful step forward.

in the absence of this - if it were me I would treat it as 90% chance that you have a borrelia infection - and move towards treatment

running wild,

Unfortunately, I believe I am right back in mold exposure. Symptoms have worsened since moving into the remediated house on June 10th.

I ordered a HERTSMI-2 test kit today and contacted the mold dog to see if he can come back. The living room and dining room feel particularly bad to me. I feel like mold has returned in the living room wall and maybe dining room by the sliding glass door.

The only way I know to make the determination is to have the dog come back. It’s either more mold, or the air is still very contaminated in those areas (large open area). I tend to think it’s a mold source in the room, because air doesn’t stay put. Air travels throughout a house.

Girlie and WBF - Sorry to hear about your individual situations. The last thing you need is more stress from yet another non-understanding person, Girlie. Hope the new position you are in works out. Company or corporate focused people are not for me. They don't understand the most important things in life. That's why I worked for myself for so many years and still will part-time if the COVID deal ever allows for road races again.

WBF - Mold has been your toughest area, or so it seems. Let's hope they find answers again for it and things get better. I'll pray they do. And thanks for the hyperlink. How did you do that on this site? I do believe the positive test result is real. I started treatment today Dr. Jernigan sent and my fever went up higher than the last week. Maybe a reaction.

Garzie - Thanks for your input.thoughts. Just wondering how you are doing.

Hopefully that is a herx reaction. Keep us posted on how this newest treatment works on the fever.

My doc tests me for RMSF and other tick infections through Labcorp. I always get a numerical result on RMSF, but it’s always below the range. I think I was told that test can cross react with other things. If it cross reacts, though, I wonder what is the point of her running the test. She runs it every time she does labs. The results vary somewhat but always below range. Still makes me wonder if I have or had it.

I used to get afternoon fevers, too, but not daily. I did have a positive test for ehrlichia. I don’t really know what symptoms it causes in chronic form. I assumed the fevers were probably bart, as I had heard that somewhere. Honestly, I have forgotten so much of what I have learned since being here that it feels depressing. I feel like I used to know and understand so much more in my early years here than I do now. There also used to be a lot more deep discussions here back then. Maybe it’s just me and my mind is getting worse. Hard to tell.

Glad you got another key to your puzzle. That’s exciting news!

For links

Type: [url] Then paste the link. Then type [url] again after the link but put a / in front of the url letters inside the bracket.

Garzie, where did you see the part about the peer reviewed journal? Thank you!

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Garzie - Thanks for your input.thoughts. Just wondering how you are doing.

Thank you for asking

I am doing well at the moment thank you - I have recovered around 50% of my former function - I feel strong and resilient in myself, able to face my challenges head-on and hopeful for the future.

I have been making slow but steady progress over the past 16month or so now - but I have to say it has taken over my life pretty much completely to achieve the forward progression.
(although that's not a complaint as i don't mind it too much as it's way better than being stuck).

I am doing a lot of interventions based on my own summary thoughts on digesting everything I could read over the last 5-6years around Lyme etc

once chronic Lyme is clearly a complex multifactorial and multisystemic illness characterized by inflammation, immune dysfunction, and in my case, digestive issues

common threads I find in pretty much all treatment regimes by the most experienced practitioners seem to be based around a multi-faceted regime aimed to address as many of the disruptions as possible to allow the body to heal itself - ie Horwitz 16 point model and others.

what I have found works best for me so far:

-a rigorous whole food paleo style ketogenic diet with 3 meals a day prepared from scratch with the highest quality ingredients I can obtain. no snacks. lots of filtered water.

-focus on sleep - trying to get 8hrs of quality sleep a night

-exercise every day and strength training every other day if I can manage it through herx etc

-gradually building up long term expanded buhner protocols for both Bart and Lyme - as per his latest books ( included anti-inflammatory herbs, immune-modulating herbs, antimicrobial herbs and adaptogens) I make these tinctures myself to ensure I get the best quality at a price I can afford long term. I add one thing at a time so I can understand its effects ( even though this feels painfully slow, understanding improves fourfold)

-3-6month courses of combination antibiotics as I can tolerate - (so far doxycycline, azithromycin, rifampicin) but open to others - esp for Bart - but my improvements started with the herbs and lifestu#yle changes - before I took antibiotics and have continued since stopping the last round. so I see them as a supplemental treatment rather than a cure.

- supplements for dietary and nutritional support - mainly the common ones for fatigue, detoxification, and antioxidants.

this multi-pronged approach is aimed at reducing the damage the organisms cause - esp the inflammation-driven effects, then modulating the immune system so it can do the job it is designed to do.

I do believe this is the most critical element - as without a functioning immune system no amount of drugs or supplements will cure even simple infections. it's now clear from my reading of around 400 scientific papers that all of these infections have adapted over time to disrupt the host's immune system to allow longterm infection. This is designed to be a steady-state unless we can effectively intervene.

The rest is supportive to help reduce the load on the body so can do what it needs to do.

There is no fixed regime - I continue to experiment and adjust and adapt based on what works.
some of the things I was most against initially have helped the most. eg the Keto diet.
it is an ongoing challenge to keep an open mind, unpick what seems to help from the noise, and yet avoid confirmation bias.

everyone undertaking this journey and finding their own path through it has my utmost respect and I hope i can learn from them.

Running Wild - thanks for your kind thoughts.

"have i lost weight?" - kind of.
prior to this illness, I was around 90Kg and strong - mostly muscle ( 5' 11'' male) but if I'm honest probably also carrying a little extra that I didn't need.

since being ill and much less able to exercise and changing my diet that has reduced to around 82-83kg but is now stable. I have to supplement most meals with some form of healthy fat ( which for me is either organic butter, organic extra virgin olive oil or coconut oil)
but that works fine

I have of course lost a lot of strength and muscle mass in general - esp in my upper body - but I am working on increasing my strength exercises now and hope to be able to rebuild myself as i beat this illness.

I had a v sore head and sensitive to light, noise, vibration etc etc for the first 3-4years of the illness - even when this reduced i continued to get a lot of headaches in the last couple of years - mainly a constant throbbing pressure/pain above my left eye.

this seems to have improved significantly (to the point where i hardly think about it) with buhner protocol in tincture form - i think Kudzu toot and Uncaria Rhynchophillia and Chinese skullcap have perhaps helped here the most.

I do have a lot of pain in my body - and associated stiffness - achiness - more in the last 6montsh than previously i think - mainly back, shoulders, neck, hips - but i think this may be associated with healing as my immune system gradually gets stronger - so i accept it for now.

i also have auto-immune issues.
thyroid - hashimoto's - this started before the onset of my full Lyme illness and I suspect it is a sign that the infection was there long before i became ill.
similarly, i started having gall bladder attacks a couple of years before getting fully ill ( v unusual for a fit male in his 40's )
Lyme and co can certainly cause both of these - and in fact, are known to commonly so i suspect that is a sign i had a latent infection of some sort for years - gradually dragging on me.

I plan to try Low Dose Naltrexone for the auto-immune issues - but am focussed on treating the infection right now and have been debating whether to add it at the same time or later - have resolved to do it at the same time - but just pick my timing to try not to confuse the picture too much.

in the meantime, I am self-administering combination T3 + T4 for the Hashimoto's and have done a series of gallbladder flushes which seem to have stopped GB attacks completely.