Posted 5/6/2018 3:57 PM (GMT -6)
Artermix- This is one of the problems with Lyme patients as a collective whole. We can't even get on the same page as to what it is we want. What are we asking for?
We should be asking for credibility and proper recognition of our disease, specifically recognition of persistent Lyme after standard one-size fits all treatment. We should ask for these things with a specific solution or objective in mind, ie better testing and better treatment that is tailored more to the individual without insurance companies denying coverage for extended treatment, and this is slowly changing state by state.
When you and others say so emphatically that "Lyme is incurable", then what's the point of even trying? Why do research or communicate with other Lyme patients or try to raise awareness? If you know for a fact beyond any shadow of any doubt that Lyme is incurable, then you should get your affairs in order and write a will. Thats what people with TRULY incurable conditions, like mesothelioma for example do.
The truth is, you DONT KNOW that its incurable. You cant prove that it is, and have very little evidence to even suggest that is the case. What you are postulating is a mere theory, and then extrapolating it into a hard and fast 100% fact, and it just isnt. Thats really not much different then what the CDC has done, insisting that all Lyme is always cured with 28 days of antibiotics. They based that on a theory and on a relatively small sample size with a short follow up, and portray it as an undeniable fact. You are using the same tactics, just from the opposite side of the spectrum.
We are slowly moving forward. Now there is at least recognition that Lyme can indeed persist beyond standard treatment, so we are trying to discover the mechanism of this and there are MANY MANY theories.
Some claim it is because of an auto-immune reaction, some claim it morphs into a fungal antigen, some claim it is indeed the bacteria itself that just takes on different forms (pleomorphic) and sequesters itself into privileged sites where antibiotics cannot reach them. And some, like yourself claim it is an immune condition similar to aids that is incurable. However, these are all just theories.
"There is plenty of scientific literature written by the same authors of the CDC guidelines, who explicitly states the spirochete live long in time after multiple treatments, with no difference between the treated and untreated patients"- Yes there is, but to take the absurd leap of logic that this is directly related to "borrelia endotoxins causing irreversible immune destruction" is unfounded and a very narrow interpretation.
Personally I tend to lean more towards the theories that have some basis in established fact. For example, we know as you pointed out, that motile spirochetes have been isolated from people who have gone through treatment. This would lead to the assumption, as with other diseases that are difficult to treat, that the treatment wasnt adequate. We know that certain bacterial infections like TB require at least a year or more of antibiotic treatment with multiple different antibiotic classes. It is consistent with established science to conclude this is also the case with some Lyme cases as well, as they are both bacterial infections. As you know Lyme is a catch all term for many different tick related coinfections, some of them like babesia, arent bacterial at all. It is also consistent with established medical science to conclude that treating Lyme with coinfections leads to longer more difficult treatments. This has been established as a fact in both veterinary and human medicine. This is the assumption many experienced LLMD's are using with much success.
To postulate that Lyme causes immune system impairment on the scale of AIDS just isnt consistent with established knowledge of bacterial infections, and is a huge leap of logic. Plus if that were indeed the case, many more Lyme patients would be dying from pneumonia and other opportunistic infections that occur in people that are legitimately immuno-compromised.
"It is an immuno-supressive disease very much like AIDS. And, just like in AIDS, the outcome is different from person to person" - No the outcome if HIV is allowed to progress to full blown AIDS without treatment is quite predictable and consistent. Look at the mortality rates in sub-saharan Africa where people do not have access to anti-retro viral drugs. The outcome is uniformly and consistently death.
Have there been treatment failures even after years of treatment? Yes there have. But for you to pretend like you know EXACTLY why this is and state it as if it were an undeniable fact, is just intellectually dishonest. Theres a lot of people in the Lyme world who make such ridiculous arguments and pretend to know better than everyone else and fancy themselves as whistleblowers. "I know the real truth, Theyve known all along Lyme is an incurable disease that will always lead to relapse and it's a huge medical conspiracy" The problem with that line of argument is that not only is it provably false, it also just isnt productive or helpful to anyone in any way. It doesnt lead anywhere. You cant prove or even adequately suggest that Lyme is incurable. No one can. The only real conspiracy is the usual culprits. Corporations lobbying and trying to save a few bucks. Conflicts of interest among a few powerful decision makers. Greed. People trying to cover their butts for their own incompetence and underestimating a disease, and of course having to compensate for portraying limited theories as undeniable truths.
We dont know why some people fail treatment. With testing so unreliable, it isnt outside of the realm of possibility that at least some of these people actually dont have Lyme. There are also many many people who succeed in treatment. You are taking a relatively samll number of negative outcomes, which is the exception and acting like it's the rule, and going even further by pretending to know the mechanism. A lot of people who 'failed treatment' with one LLMD find success using a different LLMD who employs different tactics. In fact a vast majority of people who catch Lyme treat it successfully. Treatment failures doesnt mean Lyme is incurable and that it will "always come back every time". There are far too many variables to make such an outlandishly sweeping generalization.
Furthermore you are sending the wrong message to people who may just take your word for it that "Lyme is incurable." eventhough you have no evidence to even suggest this as a possibility, people new to the disease may think "this guy sounds smart, he's citing research, he knows better than me and he says it's incurable." If people believe that, then they are likely to not even pursue treatment. Treatment is expensive and can be arduous and difficult. If a cure is impossible, then whats the point of going through all that? Treatment may fail a small percentage of the time overall when attempted, but if treatment isnt attempted at all we know for sure it will fail 100% of the time.
Just think about what you are saying when you say those 3 words "lyme is incurable" You are taking a subpopulation of a subpopulation of a subpopulation of unusually negative outcomes and claiming that is the case everytime, and erroneously claiming to know why. You later qualify it by saying "in some people" but you have no way of quantifying what percentage we are even talking about.
Lyme is not incurable. Chronic longstanding treatment resistant Lyme is not incurable. You can put as many "buts" and "ifs" and as many qualifyers as you want, and you still are incorrect in making that statement. That 3 word headline is the take away for most people, especially those that may be unfamiliar with the disease, so all you are really doing is discrediting yourself and other Lyme patients. It's not helpful, in fact it's destructive to people who need and can benefit from help. It's destructive to the credibility that Lyme needs right now. It's careless, poorly thought out and a reckless mis-statement of reality.
We have to be careful with language. A very small vocal minority of people who have associated themselves with Lyme have done more to discredit this disease and more damage to progress than the CDC or IDSA ever could have done on their own. It is the uninvolved lay people that shape the overall perception of this disease and how it will be addressed in the future. People naturally stereotype and typecast and try to put things in a definable simplistic box. When Lyme patients allow themselves to be pigeonholed and labelled as crazy by making patently false sweeping statements and associating themselves with unfounded far fetched alarmist doomsday theories, it becomes difficult for the public to see what the real truth of this disease is and makes it much easier for CDC to deny and exaggerate even more. We have to remain sensible and keep our arguments in a logical objective perspective.
There were a lot of people at this rally making sensible quantifyable requests such as improve the case definition of Lyme and allow for longer more intensive treatment regiments. These are the people I identify with. The fringe elements that suggest Lyme is incurable and invariably fatal arent doing anything helpful or productive. They arent even allowing for the potential of possible common ground or the possibility of progress. They are simply complaining for the sake of complaining and resorting to exaggeration and fabrication to get a point across that has no merit and dosnt lead to anything. They are just further entrenching the divide that exists between medical science and Lyme sufferers and making the entire movement an easy target for scorn and ridicule. If I were Wormser or Steere, or IDSA and I wanted to negatively shape public perception of Lyme sufferers, I might consider paying some of these people to make a lot of noise and discredit the more sensible pragmatic demands within the Lyme community and make it easier for the public to paint them all with a broad stroke. How's that for a conspiracy theory?