“I fell down the deep, dark rabbit hole of chronic Lyme disease sometime during the summer of 2014. My headlong descent was not by choice. No awakening ever is.
Without warning, I was forced into a painful and unending journey into the abyss of a disease I knew nothing about … [one] that had invaded our lives like a brutal, unsympathetic terrorist.”
This is the intro of my soon to be released memoir LYME MADNESS. While my son is now recovering (four years later, including the 18 months that it took to attain a proper diagnosis), I remain in the rabbit hole — overwhelmed and sickened by what we have experienced in these past four years.
How I long for the days to ‘unsee’ all that I have seen.
I long for the days when I thought that the medical system was merely flawed and had no idea just how corrupt, twisted and broken it really is. I long for the days when I believed that most doctors actually cared about their patients’ health and well being and weren’t as influenced by the powers that be as they clearly are. I long for the days when I thought that in this first world country, you would get support and attention for a medical crisis, without question.
In these past four years, I have experienced and been deeply affected by the stark reality that this is not the case. Not for us. And not for millions of Lyme sufferers worldwide.
Being resourceful and able, we continue to discover many medical work-arounds in order to help my son recover — from his initial acute stage of illness to a place of healing, with no thanks whatsoever to the allopathic medical community. For so many, this is not possible. Many Lyme sufferers go with little to no medical intervention because they simply can’t afford it. Finding a doctor who will agree to treat you in the first place and who will do so with any modicum of success requires a tremendous amount of sleuthing, knowledge, perseverance, and financial means, along with a great deal of time and effort. When you are sick and infirm, this is work that you’re just not able to do.
So I advocate for those who are voiceless. I feel compelled to do so. I speak out against the unconscionable actions of a political and medical system that is supposed to be acting in our best interest and is NOT. I cannot sit idly by.
Last week, I was invited to be on a radio show called Outbreak News with host and microbiologist Robert Herriman. The interview was long and intense. I was asked to explain why the CDC, the IDSA and all of the medical professionals whose job it is to support chronic Lyme sufferers do not. Not an easy question to answer because the reasons are multi-layered and complex and because I have to hold back in order to protect myself and my son from the repercussions of speaking out. I wish this were not the case.
Immediately following the interview, a CDC/IDSA shill who was clearly not courageous enough to reveal his name or credentials, posted some highly defamatory comments about me. Many of my fellow Lyme advocates responded, refuting his nonsense. What he may not realize is that his libellous and untrue comments actually served to reinforce our collective position that we are in fact up against a four decade old fortification of falsehoods and misinformation, denial and mockery that we are continuing to battle every single day.
It’s a hard won battle. A battle that we all have to continue to fight if we care about preserving our rights and our sense of humanity.
Lori Dennis is the author of Lyme Madness™ coming soon on Amazon.
Visit my website –www.lymemadness.ca. Be one of the first to know when Lyme Madness is ready for purchase – www.lymemadness.ca/book-launch/
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3 thoughts on “Chronic Lyme disease: Life in the rabbit hole”
There is currently no real money in Lyme treatment for Big Pharma.
Admitting to the fact that millions are suffering could ultimately bankrupt the system.
There’s no way both of these statements could be true. If there was a disease having profound effects on millions of people, that would be a prime target for Big Pharma. We’re talking about opportunities for blockbuster drugs — billions upon billions of dollars of profit at a time when Big Pharma is finding fewer and fewer of these opportunities. There’s no way Big Pharma would ignore that, much less suppress it. Your argument is not at all logical. How do you explain that?
This is a complex answer, but I’ll try to cover it all.
Lyme disease is treated with a combination of antibiotic therapy, the majority of which costs only cents to make. Those who suffer from Chronic Lyme improve on long-term antibiotics; however, it often takes years before a patient goes into remission (there is no cure for late-stage or chronic Lyme) because the bacteria knows how to evade antibiotics via cysts and biofilms.
Thus, for the 300K+ patients who test CDC positive, the costs are extraordinary for them, particularly because insurance won’t acknowledge long-term therapy for Lyme (even though long-term antibiotics are acceptable for acne and other lesser diagnoses), but they’re nothing but a flash in the pan for Big Pharma, who can concentrate on illnesses with more money-making treatments.
That is also a part of the problem. Lyme disease, particularly in the late-stage, mimics a number of other illnesses, including Multiple Sclerosis, Parkinson’s, and Alzheimer’s. In fact, there was a peer-reviewed study done in which all the test subjects with Alzheimer’s were present for the Bb infection. Big Pharma makes their money from these treatments. Millions of dollars go to these organizations for research each year. If symptoms can be improved with antibiotic therapy, which costs only cents to make, what is the incentive for Big Pharma to make their money?
The fact is, there is none. And so they deny Lyme disease in an attempt to keep the number of people who are misdiagnosed from seeking alternative diagnoses.
The research is there if you choose to read it.
If we look at a real spirochete infection that afflicts the central nervous system — tertiary syphilis — long-term antibiotic treatment is sometimes necessary to clear the bacteria. But long-term is a matter of weeks, and there are no intractable infections. The notion that Borrelia can “hide” from the immune system in cysts or biofilms is just a story invented by charlatans. The reason why the “Lyme literate doctors” claim that years of treatment are necessary is because they make their money from these years-long treatments. The reason why they claim there are intractable cases is because they are applying a false treatment for a false diagnosis — so they need an excuse for when it fails. Their “successes” are simply regression to the mean, i.e. even without treatment these cases would have improved.
Nobody is claiming there are not residual neurological effects from Lyme disease — clearly there can be. But that does not mean these effects are caused by a lingering infection. They are caused by neurological damage which is slow to heal, if it heals at all. This is similar to tertiary syphilis, in which antibiotic treatment stops the progression of the disease by eradicating the bacteria, but it does not repair the neurological damage. However, there is a large industry of “Lyme literate doctors” and “Lyme specialists” who make their money by convincing people with post-treatment Lyme disease syndrome that they do indeed have these lingering infections, and that they need long-term treatment at high prices.
This is why the ILADS criteria must be opposed. Their criteria are advocated by the Lyme industry so that a wide array of symptoms can be “diagnosed” as Lyme, even when serologic tests show no Lyme has been present. The most common cause of memory loss (dementia) is Alzheimer’s Disease, and the ILADS criteria would allow every Lyme profiteer to diagnose Alzheimer’s Disease as Lyme.
As far as any alleged connection between Lyme infection and Alzheimer’s goes, this has been thoroughly refuted. I assume you are referring to the 2004 Miklossy study, which reported the extraordinary result that spirochete infection was present in 100% of AD brains but 0% of non-AD brains. There are least two other studies which looked for Borrelia in Alzheimer’s brains and found none. There are also epidemiologic studies which show that there is no correlation between Lyme and AD.