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The Conspiracies of Lyme Disease

February 3, 2011

I’m surrounded by conspirasists. It’s reached epidemic proportions and here’s why:

In my youth, my mom or dad would take me to the doctor whenever I was so sick that warm broth

There's a difference between feeling better and being better.

and camphor oil didn’t work. We didn’t expect Dr. Vink would cure it every time, but we trusted that he knew more than we did and getting us better was his insurance for a continued practice. And every time we left his modest office at the rear his home, we got a lollipop.

Today, the paradigm has shifted. True practitioners of medical science are held in disrepute if they say, honestly, “I don’t know what to do” or  “We don’t have a cure for what you have.”

At the same time, pretenders to medical knowledge proudly announce, “When the medical profession failed me, I discovered a real cure. Now, I’ll share it with you.”

I’m really tired of Lyme people beating up on real doctors and advocating the preeminence of outright charlatans. We are suffering with an illness that is poorly understood yet some of us are convinced that legitimate medical professionals, rather than searching for real answers, are engaged in some sort of plot against us.

What’s most peculiar to me is that there are dozens of proponents of unresearched or undocumented “cures” for Lyme Disease who seem to be enjoying saint-like stature (and the accompanying financial rewards)  because thousands of sufferers are happy to demonize medical doctors who don’t have a simple solution at hand.

The world of Lyme Disease is a spinning vortex of misinformation, disinformation and an occasional glimmer of sensible commentary.

From magnetic resonance to healing waters, from esoteric berries to over-dosing on salt, the sermons of the Preachers of Lyme gather their faithful in cyber-chapels as the collection plates fill: ching-ching, ching-ching. In response to requests for explanations they offer mumbo-jumbo quasi-science or mystical revelations about the memory of atoms vibrating in sympathy with our true inner harmony.

It pains me.

Dr. Vink was, if nothing else, honest and caring. He dispensed samples from his desk drawer if he knew a family couldn’t afford medications. He came to my house when my mom was too sick to get to his office. And when he didn’t know how to fix something he simply said, “I’m sorry, we don’t know for sure why this is happening, but we’re going to work on it until we find a real answer. Here’s a lollipop, no charge.”

Sometimes I wonder whether false hope trumps uncertainty and fear. Perhaps it has a benefit, if only in the short term. What enrages me is when the self-proclaimed healers promote the hope but charge an entrance fee at the doors of their sanctuary.

Dr. Vink never portrayed himself as anything more that a physician. He was a medical doctor with medical training. He knew what he knew and was humble enough to acknowledge that there was stuff there were no answers for … yet.  He knew that just speaking with you, coming to your home to see you, could make you feel a bit better – but he never suggested that the lollipop would make you better.

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4 Comments leave one →
  1. Bev Malona permalink
    February 3, 2011 8:46 pm

    Unfortunately Dr. Vink is dead. Dr. Vink practiced the “art of medicine.” Doctors like him knew that half the battle with disease was won when there was a bond of trust and an intimate relationship established between doctor and patient. Lollipops helped as did a physician taking the time to know the patient and the family. I am not saying that there are no “Dr. Vinks” practicing medicine but they are far and few between. Peoples’ stress levels are high and they are not consoled by “modern” medicine.
    As for the “snake oil salesman” in those days Dr. Vink had the authority to call the sheriff and have the guy run out of town! Medicine has lost much of its authority. That being said the doctor is not the enemy!

    Until Lyme disease is discovered to be more prevalent than it is now, money will not be forthcoming to develop good protocols, research, and pharmaceuticals. Unfortunately all the above are driven to a degree by profit motive. I remember well the fight HIV/AIDS sufferers had to go through when all the above thought HIV/AIDS unimportant because the disease was limited to a small population. Whatever time, energy, and money Lyme sufferers have, it would be better spent in lobbying those who could make a difference. Educate the public and form allies within the medical community. Angela and Cris brought Lyme disease to my attention. I’m interested and I have the opportunity to inform my colleagues. Lyme disease is real and prevalent. The money for research, decent protocol, and pharmaceutical development will come. Attack the physician/nurse who is bound by lack of research and decent protocol serves no one.

    Great piece Cris-voice of reason.

  2. April Dawn permalink
    February 3, 2011 11:16 pm

    I haven’t had the kind of exposure that you are describing. All but a very few of the mainstream doctors I have met are completely unwilling to believe me at all – they tell me that there is no such thing as chronic lyme blah blah blah – I have never had a doctor or any healer of any kind tell me there is an absolute cure for Chronic Lyme disease – ever – just lots of possibilities to try – and some people who have made progress – but only after trying lots of different anti-biotics and other treatments. I can only say that I am truly truly greatful for the doctor who belived me – didn’t accuse me of everything from drug-seeking to attention seeking – didn’t just tell me to lose weight and get a therapist and eveything would be fine and all the other horrific things doctors have done to me – NONE of them said “I am sorry – there is no cure” they accused me of lies and forms of insanity.

    The doctor I see does’t claim to know any cures – but is willing to muddle through with me – trying different things to both treat the disease – and make my life more livable while we are trying to treat the disease – but most importantly – she listens to me – assumes I am telling her the truth until I am proven guilty – and is willing to look at all the compicated issues involved – and work very hard with me.

    I don’t know if I would use the word conspiracy – but I would say that a very large portion of mainstream doctors have either chosen to buy into extreme misinformation regardless of what is put right in front of them – or they are receiving finanical and other benefits by pretending that Chronic Lyme Disease doesn’t exist. And many mainstream doctors have failed me – as they refuse to treat me with basic human dignity and respect – listen – believe me when I show them my documented list of symptoms, medications I have taken, and responses I have had to these medications – instead they insult me and cause me great harm.

    It is extremely complicated – and there are many doctors with many different motivations – some ethical some not. But I am – again – saying that just having a doctor listen and truly treat me with dignity and respect and believe that I am experiencing the symptoms I am reporting – is a huge step in the healing process. A basic one – without it – the doctors are already causing harm.

  3. February 17, 2011 11:24 am

    Wow. Is this a tribute to the late Dr. Vink or an attack on sick people who have gone the “usual route” to wellness and been told they are a) crazy, b) lazy, c) made it up, d) seeking attention, e) don’t know their own bodies? How about this…a positive ELISA flagged, high, for lyme disease, and a positive Western Blot, flagged high as well for lyme disease, and a trip to an infectious disease specialist and a reporting to the CDC for tracking purposes….with a myriad of symptoms, NOT having sought this diagnosis because we just put it all together ourselves and thought “maybe lyme”….then to be told by the talking head infectious disease doctor, who no doubt does what the CDC tells him to do….”your tests are false positive” and may as well have added “now go home, don’t speak of this ever again, and die.” My husband has heart issues, extreme fatigue, mental confusion, 2 knees that look like baseballs, and a myriad of other symptoms that fall under the lyme disease umbrella. The infectious disease doctor looked in his mouth, looked at the tests, and he was done. He didn’t request any further testing for the well-known co-infections of lyme disease. He DISMISSED him.

    Let me tell you something…we did not search for years for a diagnosis. We thought aches and pains, memory fatigue, exhaustion, heart problems, etc. were part of getting old. HOWEVER, when my husband was crying from his headache and neck ache, after weeks of progressively feeling worse, and losing 2 phones (brain fog) in 3 months, chronically misplacing keys, wallet, aching all the time, going to bed early to “reenergize”, diagnosed with heart issues, sleep apnea, onset of dental problems despite good oral hygiene, and the worst of all was … finding him wandering the neighborhood at midnight, aimlessly, thinking fresh air would rid him of his aching head/neck, nights earlier finding him sitting naked at the kitchen table staring a wall, non-responsive to my asking “what the heck are you doing there” and when he did answer, he said “pajamas” – go figure – to going to the store and coming home because he didn’t remember WHY HE WENT THERE….to the last symptom – the nail in the coffin – saying to me “my head is vibrating” at which point I thought he was crazy and if he told that to someone else they’d confirm it====well, I decided then, 2months ago, to google “my head is vibrating” and guess what – it hit on LYME DISEASE. It has something to do with the central nervous system.

    Until that day, I would have NEVER put 2 and 2 together. But I can tell you what has happened since the two POSITIVE tests for lyme disease……he has gotten the medical runaround. His GP doesn’t want to treat him. She passed him off to the infec. dis. doctor who dismissed him by saying the tests were wrong.

    OF COURSE THE TESTS WERE WRONG. So now, I’m left with a shell of a man who goes to work, because he has to, feeling horrible, less than human, afraid of losing his job, because we were brought up with a good work ethic. He’ll probably die on the job too! No one cares that he is ill, except me and our daughter. We want him to get well.

    So what do we do? Off to see another infec. dis. doctor for his 2nd opinion. Someone who at least acknowledges that lyme exists and doesn’t sweep it under the carpet like a good little CDC puppet.

    We are scared for my husband’s life! We want a proper diagnosis. If not lyme, then WHAT? What would render him this way?

    IF PEOPLE CANT GET THE PROPER TREATMENT AND RESPECT THEY DESERVE FROM THE MEDICAL COMMUNITY, WHERE ARE THEY TO TURN?

    I read about the protocols, unusual or not, and some I can’t wrap my head around. However, oranges cure scurvy—so why wouldn’t salt and vitamin C be a cure for something????

    Do I believe in the RIFE machine? No.

    Do I think everyone who thinks they have lyme actually has it in the face of medical science saying otherwise? Of course not. BUT, there have been documented cases of people being told they don’t have it, or that they have MS, or ALS, or the cover all blanket fibromyalgia or chronic fatigue syndrome….when indeed they have spirochetes devouring their bodies.

    So, please, don’t be so eager to dismiss the ill who seek a cure. The medical world, they believe, has failed them, made them feel crazy and hopeless. Desperate people do desperate things and, yes, there is a sucker born every minute—-but they are desperate. Shame on those who will take advantage, but shame on you for blaming the ill.

    • cejesq permalink*
      February 17, 2011 1:39 pm

      It appears, Donna and April Dawn, that you have taken some offense at my piece. I meant none, but I also find that the blanket vilification of the medical profession is unwarranted. More importantly I openly condemn charlatans who pray on a community I take pride in belonging to. I do not blame the ill for their suffering, but I do agree with you that many are desperate people out there. Desperation and desperate measures do not advance the quest for real diagnostic tools or validated effective treatments.

      It sounds like you, as I, have had direct and intimate knowledge of Lyme Disease. Yes, I admired Dr.VInk. He could honestly say, “I’m sorry, I don’t know.” I am as critical of those who are dismissive of patients as you. That’s not my point. I’m truly sorry you misunderstood.

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