Chronic Lyme and the hunt for the car keys

Chronic Lyme and the Hunt for the Car Keys: ‘A Brief Analogy of Finds’

Now, as we here are all too well aware, the controversy over the existence of Chronic Lyme Disease has, in some circles, gotten to the point of a lot of shouting and counter-shouting, name calling and derision. Non-Lyme sufferers are sometimes unaware of just what a bone of contention this is. Many are simply unaware of the implications of the argument. Many are swayed by the mis-information put about by those who are adamant of its non-existence. Most people, both Chronic Lyme sufferers and those people who do not have Lyme, cannot really fathom how said argument has even got to where it is at. So, by way of an everyday analogy I would like to put forward my take on 'the Lyme Wars', with regard to Chronic Lyme.

I would like to draw your attention to an occurrence that happens in my house on occasions too frequent to recall. In my situation it is an occurrence between my partner and myself and usually involves the car keys, though I am informed that this same situation has a high frequency of reoccurrence between parents and children, and is in no way limited to any specific object.

I shall name this particular analogy 'The Hunt for the Car Keys'. It usually starts when my husband decides that a trip out in the car is necessary, and so arises the need to find the keys. The ‘hunt’ begins. The starting point for 'the hunt' involves a search for the car keys in all the 'usual' (read 'obvious') places and invariably results in the declaration that they are 'not there'. Nothing out of the ordinary so far. The amount of the widening of ‘the hunt’ is a mathematically determined variable directly dependant on the urgency of the intended trip. This then may, or may not, include extending ‘the hunt’ parameters to even the most 'unlikely' (read 'less obvious') of places. More often than not, however, ‘the hunt’ is ceased once all 'likely' places have been covered.

Regardless of the time constraint, or lack there of, the most frequent up shot of 'the hunt' for the car keys is, however, the final declaration of their non-existence, usually scientifically donated by the declaration 'I can't find them anywhere'. Other terms may include 'they aren't here', 'they aren't where I left them', 'they aren't where you said they were' and 'someone else must have moved them'.

Now, the next stage, given that thus far 'the hunt’s' out come would suggest that, in fact, the car keys do not in fact exist, it is time for a second person to repeat the search. This is a scientifically sound method and is used to verify the results of the original outcome. In other words, it is time for me to have a look. Now, as I am pretty certain most of you will be aware, it is at this point, in some previously undetermined location (but usually limited to the more likely places) that the car keys are successfully located, 'the hunt' is called off and 'the trip' can commence.

Now, there is nothing even vaguely odd about this set of events I hear you say. As a matter of fact it is no more than an everyday, somewhat mundane, if a little irritating, occurrence. So now let's examine the typical responses to the 'second person' locating an object, in this instance the car keys, that the first person had duly declared were ‘unlocatable’.

More often than not, the most typical response by person 1 (in this case my partner) is annoyance, usually conveyed in statements that include, but are not limited to, 'they can't have been there, it's not possible', 'they weren't there because I looked and I would have seen them', 'you put them there after I had finished looking' and 'they are not the same set of keys'. Now this is a debate that could rumble on, detailing the finer points of the keys exact location at time of finding, the validity of the search methods used in 'the hunt' and whose fault it is that they weren't found, or that they have subsequently been found, which is an argument that is generally, and thankfully, cut short by the necessitation of the original point of 'the hunt', which is I in fact 'the trip'.

Fortunately, for both our sakes, this series of events is not subject to scrutiny to a wider audience, nor, touch wood, has it ever been life threatening. I am not certain if is it a citable reason for divorce.

Now, for the sake of analogy, let us for a moment denote my partner as ‘Scientist A’ (a CDC employed scientist) in the search for the Lyme bacteria persistent after a short course of antibiotics and the possible causal agent of Chronic Lyme Disease. In this analogy let us suppose that the causal agent of Chronic Lyme is in fact a set of car keys. In the same manner, albeit in a slightly more scientific setting and involving much more expensive scientific apparatus, the persistent signs of a chronic infection, aka Chronic Lyme Disease (or 'the car keys) are declared 'unfound' and thus this gives rise to the statement that 'they do not exist'. Sound familiar?

Now, again, for the sake of argument, let us donate myself as a second scientist, ‘Scientist B’, working with a perhaps different, but no less scientific, set of apparatus in a laboratory that is not the CDC, who happens to find the afore mentioned bacteria causing Chronic Lyme (aka the car keys), persisting after a short course of antibiotic treatment.

What happens next is the part that is undeniably 'odd', in a very scientific sense, and to my mind the underlying source of the 'Lyme Wars' controversy, in regards to Chronic Lyme particularly, although comparisons can easily be drawn between this and Lyme testing for initial infections in many cases.

In the face of evidence, found by ‘Scientist B’, of the location of Chronic Lyme (aka ‘the car keys’), ‘Scientist A’ still denies its existence. In other words this is akin to my partner refusing to acknowledge the existence of the found car keys, even if I jangle them around in front of him, or go to the lengths of actually starting the darn car with them. In fact, what is more worrying, is that not only are the same statements as my partner give upon finding the car keys (eg 'they weren't there because I looked and I would have seen them') made by from ‘Scientist A’, but also there becomes a need by ‘Scientist A’ to declare ‘Scientist B’ delusional, or simply down right wrong.

Now, who is calling who delusional at this point? Wait for it…..

‘Scientist A’ then feels the need to involve a much wider audience in his assertion’s in the face of the fact that the evidence for the existence of the 'car keys' (aka Chronic Lyme) that is right there, in the real world, right in front of him, he still retains his belief that it does not exist. This involves ‘Scientist A’ going to great lengths of publishing his own 'lack of finding' results around the world via the internet, calling on people to join him in deriding ‘Scientist B’ and all those who accept his findings, including doctors and other scientists as well as Chronic Lyme sufferers and those without Lyme, who happen to agree that ‘Scientist B's’ findings are evidential. As a result there is more shouting, name calling, comparison to odd 'cults' and the declaration of growing population of 'loonies' and ‘quacks’.

Now, what I simply cannot for the life of me figure out is why, upon finding the 'car keys', so much shouting and counter-shouting occurs that the point of 'the hunt', (ie 'the trip'), never actually happens. Upon finding the evidence of Chronic Lyme, and the location of essence of people's suffering, the stubbornness of ‘Scientist A’ to not admit that another (‘Scientist B’) found what he did not, means that the move forward (aka ‘the trip’) and the treatment of the disease that was found cannot take place.

Now that is weird, no??

Furthermore, has it never crossed the mind of’ Scientist A’ that the reason for ‘Scientist B’ to get involved in 'the hunt' in the first place was not an attempt to personally smear his reputation? It was, like my own involvement in the 'hunt for the car keys' meant to expedite the outcome and thus allow 'the trip', the reason for 'the hunt' to actually occur. The search for the truth, causes of other’s suffering and how best to end it, was the intention of ‘Scientist B’, no more menacing than that. I cannot see how that is unscientific, unethical or 'lunacy'.

Meanwhile, if this were the upshot of every 'unlocatable' set of car keys, by my partner, in our house, I would have scrapped the darn car years ago and resigned us both to the frequent necessity of resoling our shoes. I admire those ‘Scientist B's’ who fight on. They require our respect and support wherever we can give it.



Notes-
i.I do not have any scientific evidence of the individual scientist's ability to locate actual car keys or any other everyday objects. You are on your own.

ii.Lawyers may be able to advise further on the basis of these happenings in regard to divorce proceedings

iii.Specific 'key hooks' do not definatively solve the problem of the 'unlocatable' keys, this has been attempted in our house; they do, however, have the outcome of confining the initial search area to said key hook before they are declared 'unlocatable'

iv.keys and other objects made from monatomic elements may have indeed have the ability to disappear into other dimensions, thus rendering them truly 'unlocatable'. Stick to stainless steel compounds or other non interdimensional materials to avoid this complication.

Brilliant - as usual!!

A spot on analogy...as a Mom of a sick child, the "Scientist B's" past present and future will forever have my gratitude. Thank you for sharing this, it's perfect!

An enjoyable read.

I am officially sans Lyme Brain, astroman, LOL!! Glad you enjoyed my musings, I shall direct more of them at you as they wander through my brain - you lucky people, you ;)

In the meantime, being sans lyme brain means I am up for any debate....this poor bloke will wish he hadn't started a discussion with some one with time on her hands and an inablility to know when to shut up. This isn't funny, but I thought I would share my response with you anyhoodle.... (Hey, he started it, honest mum!!!)......

Firstly I must apologise for my curt response yesterday, unfortunately time constraints did not allow me to address your response fully. I shall attempt to redress that now.

In essence my fundamental problem with sites and pages such as this one is the inference that they are set up to promote that truth. That is in principle a fantastic notion which I would wholeheartedly support, but what I tend to find is, that in reality, that means merely promote one side of a set of ideas and findings (in this case those of the CDC) to the exclusion of any other findings that contradict them. I see no posts here pertaining to any other scientific findings to the contrary, only the statement that other findings are false. That is not a debate on, or search for, the truth in a scientific sense. Why not, therefore, stand by what appear to be your actual beliefs and the title you chose go with a title statement ‘The true alternative diagnosis – Why Chronic Lyme does not exist’, for example?

Now, I hear and accept the argument with regards to misdiagnosis and I am not naïve enough to believe that this does not happen. I have witnessed this myself over the years with regards to numerous illnesses. Doctors are only human; one cannot blame them for errors now and then. In addition, do hypochondriacs get Lyme? No doubt. Do some people believe they have illnesses that they don’t? Of course. But I do not think that genuine doctor error or a small group of true hypochondriacs, people with genuine delusion in an illness they do not have, or a subset of ‘attention seekers’ represent the whole, nor should be regarded as doing. This is not just with regards to Lyme or Chronic Lyme either. Hypochondriacs also get other illnesses, ‘attention seekers’ will lay claim to a wide variety of sicknesses and diseases, but that is not evidence that those illnesses do not in fact exist.

You cite misdiagnosis of Lyme for those with ALS, MS, Cancer, etc. (for which I would be grateful for the links to these statistics, as I personally am in favour of evidence collection on both sides of the debate) and would like to correlate them with the number of misdiagnosis in the opposite direction. Here, you understand, I address Lyme, rather than Chronic Lyme, so as to avoid confusion, since there is no debate that Lyme exists. What you do not however cite is the growing evidence that pertains to the possibility of bacteriological infection being the underlying causes of MS, ALS, Dementia, and Parkinson’s, etc. For the sake of debate would it then not be rational to question how many of those could have begun with an undiagnosed or undertreated bacteriological infection, Lyme or otherwise? Again, I point you to the findings of Alan Macdonald’s research and his findings of Lyme spirochetes in the brains of 70% of the brains of Alzheimer’s patients he studied at autopsy.

The evidence of which can be read here - http://alzheimerborreliosis.net/research/ or watched on
youtube here -https://www.youtube.com/watch?v=44xL0z8I5X8

With regard to your statement that testing being somewhat more accurate than Lyme sufferers claim, I would consider, since we know that there are false negatives and you yourself are claiming false positives, this itself would suggest they are distinctly less accurate than you in fact claim. I would say far from perfect. I would, incidentally be very interested to know how such tests which are reacting to antibodies, which would only be present in a person had they been exposed to the bacteria in question, be detectable in a person that it is claimed hasn’t; this being the basis for a claim of a false positive?

Now, I understand the concern over the unscrupulous ‘snake oil’ peddlers, out to make money from sick and desperate people, and this is a valid argument. That said, we live in a profit driven capitalist society and so to believe that such money making incentives are strictly limited only to the ‘quacks’ smacks as somewhat misguided. Do not for a moment think that the same monetary incentives do not affect any of the doctors whose claims and findings you back. Or that sales of the ‘Lyme and other Baloney Diseases’ book profits are headed to charitable organisations. To believe that would surely be unbelievably naïve. That is not conspiracy. That is capitalism. If this and other sites and pages like it are indeed in search of the truth, then why is only the money the ‘quacks’ make of any concern?

Here I would also draw your attention to John Caudwell, given that he is a person who ‘claims’ that he and his whole family, have Lyme, which you suggest is at best far-fetched. Given that he was a billionaire before that, and given that he has been prepared to risk his reputation as straight talking, sensible business man and has faced mockery and ridicule and that in addition, rather than make a profit from his claims he is prepared to donate large sums of money to research and testing facilities, I would question how he in fact benefits, monetarily or otherwise, from this? In addition, any profits (which must be small considering what I paid) made by the ‘quack’ who treats me go directly to charity. My clinic based treatment is offered free of charge. I thus question the tendency to lump all supporters of Lyme and Chronic Lyme treatment and doctors who are diagnosing and treating Lyme and Chronic Lyme together in one big, money-making boat.

If indeed it is your intention, which I sincerely hope it is, to find the truth then there should be the need to present balanced information, or at the very least if you wish to convert opinion away from the ‘false claims’ of Chronic Lyme’s existence, then the inclusion of alternative view points and accompanying explanations as to why they are wrong, would be more productive than ignoring them. If it is indeed your intention, through this page, to present the truth then why are the counter arguments and findings not addressed? Would I still expect shouting and name calling? Why certainly; this is social media after all. But it would be more representative of a persuasive scientific debate, more true to the title you gave this page and rather less like the propaganda vehicle it appears to be.

If it is your intention to save people from the misdiagnosis of a ‘fictitious’ Chronic Lyme diagnosis, then why does it not contain more helpful information on how to obtain alternative ‘mainstream acceptable’ diagnosis? What symptoms in fact pertain to other diagnosis and how people should go about addressing them and raising them with their doctors? What people whose alternative diagnoses have been ruled out ought to do next. This would surely be more helpful than citing articles about which is the ‘worse cult’ and The Simpson’s Dr. Nick. If you are wanting to help people, then do so; do not make them feel derided and belittled and as admin on the page you should take on the responsibility of making sure that this doesn’t happen, if your intentions are, as you claim, to find truth.

Alternatively, perhaps your concern is based on the long term use of antibiotics, which is a valid, stand alone, argument, regardless of the disease they are used to treat. In which case I have to wonder why people who feel the need to express this concern so strongly about their use for Lyme Disease do not feel the compulsion to also express their concern so vocally about the 6-12 month prescriptions of antibiotics (often in combination with steroidal cream) for children with acne, for example. Surely their use is as questionable in this case?

Or, perhaps, your concern also extends to the use of experimental, dangerous, possibly toxic medications used when a cure cannot be guaranteed? If so, why are people, such as yourself, not also focused on the use of chemotherapy for cancer, which fulfils all of those criteria? And, yes, even here, misdiagnosis happens. If your concern is over what treatment should be used then why not use this page to investigate and promote safe alternatives? Chinese herbs, which have been around for millennia, and whose effects, side effects and contraindications are well documented, for example. Most of these focus on the treatment of specific symptoms, regardless of causal agents, boosting immune systems and healing damaged areas of the body. These surely could be examined on sites like this, even if the stance that Chronic Lyme doesn’t exist, as this would not in fact be the issue. The issue would simply be trying to help sick people get well?

Just an aside, but if your aim here is to prevent people taking medications or ingesting chemical compounds that are unnecessary and unhealthy, and thus saving them from themselves, then equal efforts would be best focused on the food industry (including ingredients, growing methods, pesticides etc, etc)

However, I am under no illusion that the basis of your argument for the above points will not simply counter back to the belief that borreliosis cannot persist after the first short course of antibiotic treatment and so will write those points above off as inconsequential. That would lead me to believe that it is not really about your concern over the use of antibiotics or ‘dangerous’ medications or any other issue raised at all. It is simply to reiterate the point that you believe that the CDC is right and everyone else is wrong. I will thus return to my point that such findings for Chronic Lyme do exist, are backed by empirical evidence, and can be found here –

* Findings of Professor Kim Lewis, May 2015, (Antibacterial Discovery Center, Northeastern) - www.aac.asm.org/content/early/2015/05/20/AAC.00864-15.abstract -a paper published online in the journal 'Antibacterial Agents and Chemotherapy'which details
dormant persister cells, found to be drug-tolerant and able to evade standard antibiotic treatments.

* Findings of Dr. Judith Miklossy et al, published in the 'Journal of Neuroinflammation', 2008, which show (with photographs) the evidence of cystic forms of Bb, which lead to antibiotic resistance and chronic symptomology.

* Findings by Dr Gary Wormser, published in the 1990's demonstrating that up to 20% of patients treated with both doxycycline and Ceftin did not adequately respond to treatment and developed chronic symptomology.

*Findings of Alan Macdonald and many others - available on youtube to save a bit of reading

https://www.youtube.com/watch?v=SVXtM-nGGiM&feature=em-subs_digest-g or you can go here and check out which bits may specifically interest you (there are 16 hours total)
http://jennaslymeblog.com/dr-nicolson-at-norvect-2015/

*Findings of Stricker, R. and Johnson, L. found on 'Dovepress' (openAccess articles)'Infection and Drug Resistance' (2011:4 1-9) - at the end of which you will find a list of over 80 other
relevent cited articles, many of which directly back up their findings for Chronic Lyme, with empirical evidence.

There are more I would be happy to link you to should you like.

I am not optimistic that you will see fit to read them and certainly not to include them on this page as part of a wider discussion, but at least I have backed up my claims.

Just so as you are aware, and to anyone else here who reads this, just months ago, before successful treatment of my Chronic Lyme began, I struggled to get out of bed, I struggled to string a comprehensive sentence together or even speak coherently at times and I certainly could not have even considered writing any post, on any page, let alone form a comprehensive argument as part of any sort of a debate. I believe that my diagnosis was correct, my treatment has been effective and I wish to pass on the message that with both of those things anyone now suffering from Chronic Lyme can also get better; just as I am.


*Hey, anyone need a debating partner, it is going to take my guy a while to get through that, so I am open to offers, LOL!!*

Thank you Traveler, it is an honour to get a comment like that from a 'seasoned professional'! :) I am a proper newbie, lol, I am still working up to the badge - there is a badge, right!!??!!

It is difficult to navigate around the shouting and name calling (such is the social media way ;) ), but as you know a bit of serious science can go along way....especially when I nick all your links, te, he!

I am playing 'science lecturer' over on 'the imagination station' at the moment, but am dabbling elsewhere, just for fun :)

I will yell for backup in your direction!

Silly sheep

I guess the term "lyme brain" covers an array of "mental" abilities.

You don't appear to have lost the ability to string the written word together... and in a creative fashion. Many with "lyme brain" here can't do that. Word recall, creativeness, cleverness can go out the door.

As a published column writer of five years in the past, I recognize these things. Now this was just a small sample, but I'm guessing that you still have something that non-writers never even had to begin with. And you still have it, even with lyme. wow.

All the reason why we need good solid, reputable lyme and Co-Inf tests. Since the CDC is more likely backs illness they can see on paper.

Was taking a step back from here, & yet you, SS, drew me back in! Love the platypus~~so your including-perfecto! I missed who you were originally debating with, but it appears TKO with champ, Silly Sheep!

Happy your brain has regenerated! Btw, I do believe there is a book or 2 in you!