Posted 4/10/2016 8:17 AM (GMT -7)
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)
*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!!*