• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Interesting chronic lyme study

Helen

Senior Member
Messages
2,243

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
Ian Lipkin suggested in a talk, as reported, that there might be other microbes that are transmitted by ticks that could cause "cronic Lyme". That´s another point of view then what have been proposed so far. This poor man seems to prove Lipkins hypothesis.

Well there are two sides to it, first we have plenty evidence that shows infection in chronic form with bacteria found in autopsy after "adequate" treatment. As well various other times of finding active chronic infection in the body of people with chronic lyme, along with subsequent co infections. It is no mystery why people are still sick after antibiotic treatment but the lack of testing and further research on part of the CDC makes it controversial in the health care field.

So yes there is obvious proof that chronic infection of borrelia exists and is persistent in a vast majority of these cases. This is the same kind of bacterial spirochete as syphilis after all. Known to have several stages of life cycle and proven to cause long term infection. On the flip side there are many co infections that these ticks carry and some unknown diseases like the virus like in this case. There may be many cases of unknown etiology vector borne disease but it doesn't discredit the elephant standing in the room either.
 

Helen

Senior Member
Messages
2,243
@Martial I have just been diagnosed with Lyme and Yersinia by one of our specialists in ME and infections, so I am fully aware of what you tell and agree to that it is too common that cronic Lyme patients just haven´t been optimally treated. I do hope that we soon will get better diagnosing for the elephants standing in the room;). That should lead to good treatment too.
 

duncan

Senior Member
Messages
2,240
It will be interesting to see who responds to this Johnson/Stricker study from the likes of the IDSA. My guess would be a Wormser/Lantos tag team, and maybe Shapiro, and possibly Marques because it uses CLD and PTLDS interchangeably. I will be surprised if someone doesn't respond because, well, it seems pretty obvious there is no great love for ILADS. And they likely will feel compelled to because it's a study, and they will likely think they need to do damage control. Besides, it's almost become a knee jerk reaction from IDSA types - to me, it appears they think they are falling behind on the LYME PR front.

I suspect they will attack at the definitional level. Perhaps they will claim that using any non-CDC compliant subjects is indicative of the poor research standards embraced by this team, and that it is reflective of unreliable data generated by the study. The abstract alone might lead one to conclude these were all patients clinically diagnosed without any diagnostic lab support, and that is the usual myth folks like these deploy to demean papers and positions supported by ILADS - but that conclusion would be wrong. The paper here makes it clear diagnostic labs were used in a majority of patients in this relatively large survey.

I HOPE they attack the use of the label "chronic Lyme Disease", and I'd be surprised if they don't. Wormser, in particular, has been outspoken about even its existence. But if they do attack the interchangeable use of CLD and PTLD, they leave themselves open to rebuke, because the NIH does it in one of its longest standing Lyme studies ever.

Anyway, expect some kind of response. This is an important paper. It speaks to the fact the Lyme patients post-standard-treatment, still suffer from debilitating symptoms. That more or less runs counter to how the Old Guard typically like to portray PTLDS sufferers. They usually tend to downplay severity. Seems like just last month they published two papers suggesting Lyme patients post treatment with fibro symptoms and those with claims of fatigue didn't really seem all that bad off (at least that's how I interpreted those efforts.)

And yes, the Bourbon virus. Found in Kansas, NOT in the East. It's deadly, too. Makes you wonder how many more pathogens can be packed into those tiny little bugs.

You cannot create sketchy vaccines for all those pathogens. And no amount of tick repellant is going to eliminate the risk. Somewhere down the line authorities will have to get serious about intervening directly at the tick level.
 
Last edited:

zzz

Senior Member
Messages
675
Location
Oregon
And yes, the Bourbon virus. Found in Kansas, NOT in the East. It's deadly, too. Makes you wonder how many more pathogens can be packed into those tiny little bugs.

You cannot create sketchy vaccines for all those pathogens. And no amount of tick repellant is going to eliminate the risk. Somewhere down the line authorities will have to get serious about intervening directly at the tick level.

From the article on the Bourbon virus:
The CDC says the best way to prevent the disease is to just avoid being bitten by a tick.

So simple. So elegant. So CDC. :bang-head::bang-head::bang-head: