Post Lyme Treatment with KDM

[Cipher]

You know a lot, thank you! May I ask you what treatment you did? What treatment helped you? I guess Lyme is, depending on how much you know about it, the main thing that caused your illness?

I actually don't know yet what/if pathogen(s) are causing my problems. I'm currently preparing to do a very broad lab panel covering most of the ME-related pathogens (inspired by Hip's roadmap). Lyme is pretty high on my list because of my history with tick bites.

Another Lyme test you might find interesting is the Nanotrap® Urine Test. According to the study linked in that post, it was 100 % sensitive for acute Lyme, and 0% of the healthy controls tested positive. When they tested patients with possible chronic Lyme, 41 % tested positive. If this means that only 41% had chronic Lyme (and the rest had other infections/diseases), or if it means that it's less sensitive for chronic Lyme compared to acute Lyme, is unknown.

When it comes to Parvovirus B19 you might want to do a blot test that includes anti-B19 NS1 IgG, as it have been shown to be more prevalent among ME/CFS patients than healthy blood donors, and is thought to indicate chronic/severe Parvovirus B19 infection. It might be more sensitive than IgM (ELISA, CLIA etc).

It's not listed on their request form, but IMD Berlin got a Toxoplasma Gondii LTT test. From what I've read, regular Toxoplasma Gondii antibody tests aren't reliable in the chronic phase of the infection.

@Cipher Hi there, out of curiosity, I contacted RED labs about false positivity of Phelix Phage, here is answer:

"We do not have false positive results as we perform confirmatory sequencing for every positive-like sample."

Anyone else researched it?

I had a skype call with Louis Teulieres, one of the developers of the test. He said (perhaps unsurprisingly) that he has high confidence in the phage test and that a positive result guarantees an active infection. However, he did acknowledge that it is definitely possible for someone to have an active borrelia infection without any symptoms. Teulieres said that it is possible that my symptoms come from this infection, but it is far from certain. This is consistent with the post quoted above by @Cipher and with the statement you received from redlabs.
This would mean that

• The statement "There are many false positives" is incorrect
• However, the statement "Many people who test positive are healthy" is correct -> They have the infection, but is does not harm them. This is what the presentation posted by Cipher says. In my understanding, the presentation says nothing about specificity (i.e. the proportion of false positives).

This distinction is crucial.

I personally find it improbable that this test is accurate in saying that 48% of healthy people have an active Borrelia infection. But even if it's true, that means that if you test positive you got a 50/50 chance that you would have tested positive anyway, even if you were completely healthy. In my opinion, this severely reduces the usefulness of this test in its current form, even if it got no false-positives.

Something that make me suspect that this test do generate false-positives is the fact that they report that 60% of ticks they tested were positive for Borrelia miyamotoi phages, while only 15 % were positive for Borrelia burgdorferi sensu lato phages. This is in stark contrast to several studies that tested ticks for Borrelia spp. using PCR.

One study from Spain found that 12.9% of Borrelia infected ticks carried B. miyamotoi (87,1% Borrelia burgdorferi sensu lato). Another study from Sweden found that 1% of Borrelia infected ticks carried B. miyamotoi (99 % Borrelia burgdorferi sensu lato). One study from Germany found that around 25% of Borrelia infected ticks carried B. miyamotoi (75 % Borrelia burgdorferi sensu lato).

 

[Judee]

The deterioration came from day to day. At night I woke up sweaty, felt very inflamed all over my body, and the next day I woke up worse.

@MartinK, a lot of people in the FB group Disulfiram for Lyme talk about co-infections and looking at your test (from what I can tell anyway) it looks like you were not tested for Babesia and Bartonella. Both of those are known to cause night sweats.

A lot of the LLMDs have said you need to treat those separately.

I bet you were making progress on the main Lyme bacteria, Borrellia, but are now dealing with co-infections that you were not tested/treated for.

If you are on FB why don't you join that group and ask for advice because it sounded for a while like you were making some happy progress with your disease.

 

[Aubry]

How can anyone still believe in this lyme and co-infections nonsense?

 

[maple]

How can anyone still believe in this lyme and co-infections nonsense?

 

[maple]

Hi @Aubry. I wish the Lyme thing were nonsense. But it’s real. Finally, after years of treatment, I am starting to feel human. Just because the science is difficult and the treatment inefficient doesn’t mean the condition isn’t real. It’s very real. And we need more research to make things better. Ticks are dirty needles and rarely infect you with only one thing. So treatment is difficult because you need to zap the whole lot. And we don’t have good drugs for it. So I encourage those who struggle and those who research.

 

[Judee]

How can anyone still believe in this lyme and co-infections nonsense?

https://news.tulane.edu/pr/study-fi...n-brain-despite-aggressive-antibiotic-therapy

Tulane University researchers found the bacterium that causes Lyme disease in the brain tissue of a woman who had long suffered neurocognitive impairment after her diagnosis and treatment for the tick-borne disease. The presence of the corkscrew-shaped Borrelia burgdorferi spirochetes in the former Lyme disease patient’s brain and spinal cord were evidence of a persistent infection.

The findings were published in Frontiers in Neurology.

 

[MartinK]

Hi @Judee Disulfiram is also effective for Babesia, not for Bartonella what I know.
I had positive Bartonella in past, but atfer first atbx protocols is total negative for more years ;-)