Discussion in 'Lyme Disease and Co-Infections' started by minkeygirl, Apr 1, 2015.
To be clear, the actual quote from the doctor is that chronic lyme disease doesn't exist, which is something that a lot of doctors say.
I don't agree with this at all, just pointing out that the headline is a little sensational.
Is there such a thing as a medical shock jock?
In medical science, you need to put your money where your mouth is.
When Dr Barry Marshall came up with his theory that the bacterium Helicobacter pylori was the cause of stomach ulcers, he was prepared to ingest these bacteria to prove his ideas, and in doing so, was able to demonstrate that these bacteria do indeed cause ulcers.
Similarly, those medical professionals who think there is no such thing as chronic Lyme disease need to prove their claims, and they can do this by injecting themselves with Borrelia bacteria. Since these medical professionals believe that only acute Lyme disease exists, they have nothing to worry about, because if they are right, they will only suffer a short course of illness, acute Lyme disease, but will suffer no chronic problems after the acute illness clears up.
However, if they are wrong, and some do develop chronic Lyme disease after injecting themselves with Borrelia, although they will have screwed their lives up, these medical professionals will have done something very useful, which is to conclusively demonstrate that chronic Lyme disease exists.
So here is a challenge to all those who don't believe in chronic Lyme: get out a syringe and inject some Borrelia. Put your money where your mouth is.
I'd go a bit further, and say that they need the full tick experience. It's quite possible that chronic patients are successfully treated for Lyme, while undetected co-infections go untreated and continue to cause problems.
This would obviously do nothing to convince people that chronic Lyme doesn't exist just like all those who are safely vaccinated does nothing for those who are convinced vaccinations can cause autism.
With no understood root cause, then correlation will equal causation in the eyes of many - which is understandable since it's human nature.
Lyme is an onion, isn't it? Peel back one layer simply to expose another, and then another.
This "chronic Lyme " fiasco is a house of cards built on equivocation. If you toss out the name "Lyme" and replace it with Borreliosis, some of the difficulties recede. For instance, STARI would probably be acknowledged as Lyme. Same with B Miyamoytoi, athough that is really a relapsing remitting agent. There might also be a unified push to generate a diagnostic with enough sensitivity and specificity to be applied cross-species. If you live in Europe, you can get tested for b burgdorferi and b afzelli and b garinii. That's not true in the US. In the US the official government position is neither garinii nor afzelii exist in North America, so no one tests for them. So, Hey! Are you stuck in Albany or Dallas or Chicago with a raging case of neuroborreliosis caused by b garinii? Odds are you won't get tested for it; God knows what a given clinician will say you have.
Meanwhile, whatever species you are fortunate to be tested for, the 2T diagnostic protocol acts as a virtual built in governor, effectively assuring the number of reported cases stays low - even though it may be jettisoning thousands of false negatives into the streets where their condition worsens as the disease takes hold and strengthens.
As Valentijn pointed out, Chronic Lyme deniers should also consider the ever-growing assortment of tick borne diseases that include multiple forms of Borrelia and Risksettsia and viruses like Powassan and the Bourbon virus, and parasites like Babesia and other pathogens like Bartonella and Ehrlichia, all transmitted through tick bites, most without good diagnostics..Any one of these can leave in their wake individuals who are very very sick. When stuck with a clinician that doesn't know what to look for, wielding outdated poor tests to help misdirect and confuse, patients often just get slapped with the Lyme label without any proof it's Lyme - cuz maybe it's Miyamoytoi or Babesia or Bartonella. Shoot the poor bastard because he thought the disease came from a tick, so it logically would follow it's Lyme. That's what many clinicians would think if a patient stumbled in with an embedded deer tick. But there is an ugly need in some doctors and researchers, to denigrate the disease and vilify the victim.
The result? The old Lyme guard ridicule an entire patient community as never being sick with Lyme, even though the patients may have any one of several TBD pathogens, or even worse, multiple co-infections. And yes, even when they have Lyme despite tests which might indicate otherwise (most people don't know that the number of IgG bands can fluctuate over time; one month I might only have 3 bands positive, the next five - so in a space of two months I have gone from Lyme negative to positive, when I have been positive all the while.)
The final insult is when you focus on Lyme alone, when you drill down into Borrelia, the agent of Lyme and a) you reveal current diagnostcs are kicking to the curb many sick with Lyme, kicking them back onto the streets for failure to pick up the scent, and b) treatments don't work for far too many Lyme patients just with your garden variety Lyme. Why? Because the outer surface proteins of Bb are constantly shifting, fooling immune systems. Moreover, that little bug is expert at finding and digging into secure parts of the body, like the brain, where it is safe both from the victim's immune system, and most abx. The truth is, if Lyme isn't caught early, if it progresses to late stage disseminated, Lyme symptoms may grow entrenched and they can intensify and Bb can be devilishly challenging - if not impossible - to eradicate.
On top of all THAT, there are differences in species - with each species comes a unique set of properties and problems peculiar to that species. The same holds trues with strains. A 100 strains are out there in a multitude of ticks, outside in parks and ball fields and playgrounds and nature paths, but most Lyme test kits are built to look for a single strain, B31. Only one. (And even it has properties that help it elude detection and fool immune systems)
Over 35 species of Borrelia alone, at least five or so that are known to be pathogenic. And 100 strains. Spirochetes that shift their outward appearance to fool immune systems. Multiple severe pathogens that comprise TBDs, including a few that can kill you in short order. If you just mull on the permutations alone, just for a few minutes, I'll wager many will think twice before going for a stroll in the tall waving wild grass where they might pick up a bug that defies tests and treatments, and stamps its victims as malingerers and hypochondriacs.
But chronic Lyme doesn't exist.
How are Dr. Marshall and chronic Lyme even related? Just because a scientist comes up with a maverick theory, it doesn't mean it is or is not correct.
The story of Marshall drinking the concoction of bacteria and developing an ulcer has taken on mythical proportions. It's actually more complicated than usually understood. He was not the first person to do this and his " ulcer cleared up in ten days.
There are reasons for this transient effect happening and I plan to explain in more detail in another thread as I do't want to get this thread OT. The history of h pylori is absolutely fascinating.
My opinion is that chronic lyme does not exist but post treatment lyme does. Studies are showing that the original infection starts a set of cascading symptoms, even though the original infection is eradicated. This means different treatments.
The lyme literate doctors are making lots of money off the unproven treatment of long term antibiotic therapy. Insurance rarely covers more than the standard treatment or a longer treatment if an infection is especially stubborn. When a doctor doesn't take insurance, that means more money for him/her and it's easier to evade taxes. Just look at the long waiting lists.
Cha Ching, cha ching!!
While insurance companies have a lot of flaws, when they don't cover something, that's usually a big red flag for me.
That's my opinion.
The onus of proving chronic lime exists is on the lyme literate doctors since they came up with the new theory.
Barb, I am not sure why you make this an ILADS vs IDSA kind of thing.
It's about whether the spirochete survives treatment, and that has been demonstrated as recently as six months ago when Kim Lewis of Northeastern and Zheng of Johns Hopkins proved persisters existed. In fact, they are working on a protocol to deal with persisters.
btw, no such thing as post Lyme syndrome. The CDC does believe there is such a critter as Post Treatment Lyme Disease Syndrome, but that critter doesn't have any teeth.
ETA: Also, btw, chronic Lyme is widely and accurately used throughout the world, especially in European nations where Bb is endemic. It wasn't Lyme literate doctorates that perverted the usage. They simply embraced it and used it in such numbers that a counter-initiative was launched to discredit the concept.
Interesting. Do you have a link to this study? I couldn´t find it.
Ying Zhang and Kim Lewis. Kim Lewis is famed for proving persisters in MRSA, and for devising a treatment protocol for those persisters. He is from Northeastern. I don't recall the name of the study. I can find the press release about the study, but I am embarressed to confess I don't know how to cut and paste. I keep writing notes on how to do it and then I forget where the note are.
Ying Zhang just co-authored another study with fellow John Hopkins Lyme expert Paul Auwaerter. This is noteworthy because Auwaerter is one of the old guard, and a staunch opponent to the notion of chronic Lyme
EDA: They published this list of drug candidates for treatment of persister borrelia. It's pretty cool, if anyone can find it. I am exploring a cocktail based on it that includes daptomyacin, but I haven't priced it yet. Not even sure if it has to be administered parenterally or not.
I'm not saying it's right but the view that chronic lyme does not exist is not exactly unusual or controversial among mainstream doctors.
I think you'll find that privately the CDC knows all about persisters... I believe this is the treatment they were working on.
Drug Combinations against Borrelia burgdorferi Persisters In Vitro:
Eradication Achieved by Using Daptomycin, Cefoperazone and Doxycycline
Jie Feng, Paul G. Auwaerter, Ying Zhang
PLOS One 10(3):e0117207. Published: March 25, 2015.
Although most Lyme disease patients can be cured with antibiotics doxycycline or amoxicillin using 2-4 week treatment durations, some patients suffer from persistent arthritis or post-treatment Lyme disease syndrome. Why these phenomena occur is unclear, but possibilities include host responses, antigenic debris, or B. burgdorferi organisms remaining despite antibiotic therapy.
In vitro, B. burgdorferi developed increasing antibiotic tolerance as morphology changed from typical spirochetal form in log phase growth to variant round body and microcolony forms in stationary phase. B. burgdorferi appeared to have higher persister frequencies thanE. coli as a control as measured by SYBR Green I/propidium iodide (PI) viability stain and microscope counting.
To more effectively eradicate the different persister forms tolerant to doxycycline or amoxicillin, drug combinations were studied using previously identified drugs from an FDA-approved drug library with high activity against such persisters. Using a SYBR Green/PI viability assay, daptomycin-containing drug combinations were the most effective. Of studied drugs, daptomycin was the common element in the most active regimens when combined with doxycycline plus either beta-lactams (cefoperazone or carbenicillin) or an energy inhibitor (clofazimine). Daptomycin plus doxycycline and cefoperazone eradicated the most resistant microcolony form of B. burgdorferi persisters and did not yield viable spirochetes upon subculturing, suggesting durable killing that was not achieved by any other two or three drug combinations.
These findings may have implications for improved treatment of Lyme disease, if persistent organisms or detritus are responsible for symptoms that do not resolve with conventional therapy. Further studies are needed to validate whether such combination antimicrobial approaches are useful in animal models and human infection.
So, this is the John's Hopkins offspring, the joint effort between Zhang and Auwaerter. That is what you call reaching across the aisle. But they are associates.
Zhang's work with Kim Lewis predates this, I'm pretty sure.
And my understanding is Zhang is working with someone from Steere's old stomping ground up in MGH in Massachusetts (or one of those Harvard affiliated hospitals up there) on possibly trialing some of those combinations on patients. This hasn't been confirmed yet, though.
I changed my post. I used the wrong terminology.
I don't know about other studie but in vitro studies don't necessarily translate to humans.
Cant put this in the above post.
....which is why, barbc56, they are planning trials...
... which has no impact on the actual demonstration of persisters, already accomplished by both Lewis and Zhang...
...which would easily explain and validate the existence of chronic Lyme...
...which most of the civilized world, including the NIH, has acknowledged for years in one form or another.
Hmm, some doctors are morons/ignorant...I think I already knew that. I wouldn't have minded as much if he had said that it was very uncommon, but ascribing 100% effectiveness to any particular treatment seems to be a little dull. But then this doctor probably wasn't top of his class (at least, I hope he wasn't).
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