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Many of you are misdiagnosed

AnonymousUserAAnonymousUser Posts: 49,578
edited 06/11/2012 - 7:24 AM in Chronic Pain
I am not a doctor, but I believe that many of you are misdiagnosed.

Even if you have bulging, or herniated discs, your problems may originate from something entirely different.

Don't even bother approaching your family physician, or any medical professional, or anyone other than a physician that is recommended by a large number of people, who have been cured if you decide to investigate this disease. Otherwise, even if you have the disease, your test results will come back negative, or you'll be treated in a manner that will not cure you, and you will certainly be laughed at or worse.

Of course many of you do not have this disease, but please read on.

If you pursue more knowledge, don't fall in with the "enthusiasts", who actually seem happy to have the disease.

It has been a long road since I diagnosed myself. Who would have thought that the problem origniated from something other than my back? But you see this disease magnifies injuries, making them seem much worse and more debiliating than they actually are. The disease is much, much, more common than most people suspect.

My MRI shows bulging discs at 4 locations in my lumbar spine, one of which has a lateral tear. I've got two fusions in my neck. Last year I would only rarely lift objects heavier than 15lbs, and then only with great trepidation, and the prospect of frightening back pain for days afterward.

I'd quit doing most of the things I loved. Even swimming and walking were problematic.

Then symptoms other than what might typically be associated with my back began to appear. My skin began to burn, my face was twitching, there was pinching deep in my muscles, and my back pain increasingly was accompanied by arms and hands that would fall asleep at night to a frightening degree. I was so certain that it was coming from my back. I started barraging the neurologist and neurosurgeon with appointments where I underwent MRIs, etc.

Most people with this disease see dozens of doctors before they find one that can help them, (in the unlikely event that they ever find one at all). Usually they do not find one, and are diagnosed with one malady after the next; first it may be coming from their back, which may have very real problems, then they may seem to have fibromyalgia, then maybe the progress to worse things, like Parkinson's, MLS, Lour Gherig's, etc.

When I tell you what it is, please don't knowingly nod and write your reply explaining why you don't have the disease. I respectfully ask that you don't clutter this thread unless you simply want to discuss the issue. I'm interested in communicating with people who have wierd symptoms that seem like more than what would be expected to come from their back. I respectfully ask that you don't write to say that you don't have it; yes it is probably true that most of us here don't have it. But I suspect that many of you do; many more than you would expect.

I sort of self diagnosed myself with this disease. But once I did, my life changed. For one thing, my bank accounts are a whisper of what they once were, but my life has been given back to me, if only for awhile. Insurance companies don't recognize any validity of the treatments that work for this disease once it becomes chronic. The CDC does not recognize that a chronic form of the disease exists at all.

Last night I did what I do a few times a week. I was in the Gym doing 15 reps of military presses with 70lbs. I do a whole weight workout now. Each month the difficulty I percieve from my back is restricted to only a week, and becomes less intense each month. I have returned to surfing, and doing nearly whatever I want.

It is not my intent to give you false hope. But I was contemplating taking out loans and traveling to Germany to have artificial disc surgery less than a year ago, now I am dramatically recovered. I was hanging on an inversion table, even coming home from work, desperate for relief. The inversion table sits unused in the corner of our bedroom(and it is very large much to my wife's chagrin).

I am talking about Lyme disease. I want you to be careful if you investigate it. It is so possible to have it, and to have a cure within your grasp, but then to head off on the wrong tangent and lose the hope.

You might start by finding the symptoms of Lyme as provided by a Dr. Burrascano. There are about 72 symptoms on the list.

My heart goes out to those who cannot find relief, and it is of course the case that so many can neither find the answer from what I've written here. But I believe that some of you certainly can.

Don't be intimidated, just do some research. Now I'll get up, but not because I'm afraid of the pain that might come from sitting in the wrong position for to long as I was only a few months ago. As a parting comment; I was terrified of car rides lasting over an hour just 8 months ago. Last week, I traveled out to Arizona on business but took a few days up in front to see things. I drove for over 1200 miles, a few days later I drove hundreds more in Maine, all with airplane rides to and from my home state of Florida...with almost no sensations (pain) coming from my back at all.

Be careful. The road is full of well meaning individuals who will steer you in the wrong direction, well meaning doctors who will do the same, and even some who take advantage of those who are sick (I know, I lost thousands to one of these). But for some of you the answer is Lyme disease I think. Some of you are laying there wondering why your skin burns, or your face is doing crazy things, or why your vision is screwed up all of a sudden, or why you seem to have arthritis, or the strangest of sensations and pain, and worsening back pain, and you are just lying there oblivious to help.

Best of luck



  • for sharing your history, and heartfelt concerns. Happy for you that you are on the road to health and happiness =D>

    There could be one person, or many here that you've helped by sharing...and that's fantastic!
  • Actually I have heard of a lot of people being diagnosed with lymes after suffering many years of pain. Most doctors don't test for it especially in here in the NorthWest where it hasn't been very common. I talked to one doctor who thought a lot of people who suffer from Fibro actually have lymes disease. Something to look in to.
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  • I have a dear friend who suffers from lyme disease and was misdiagnosed for many years. She had been in a serious car accident and the doctors that she saw kept attributing her pain to that. But her family doctor, for some reason, decided to test her for LD and low and behold......She has since been living a close to normal life and no longer suffers through needless testing and treatments.

    She found a wonderful, board certified internist who specializes in infectious diseases, and her life is now changed for the better.

    Excellent insight and information. As Gemini said above, if you've helped even one person, that's fantastic. Thanks for the heads up. Mitzi

    (I've been tested, BTW, and the tests were negative in my case, but I'm glad I checked into it)
  • I've just had a quick look. Very interesting but my gut feel is that so broad are the symptoms that many ppl will fit the box.

    My concern is how readily is one to get a diagnosis. Looks like it is so broad it would be hard to diagnose.

    Medicine is not an exact science and we bounce around the services until we recover or get some relief.

    Hope your post helps some people.
  • Mitzi,

    My Lyme test came back negative. I wonder what I'd be doing now if I'd have stopped there; maybe I'd be in a recovery room in Germany with fresh new lumbar discs because I was absolutely certain that I needed them to live normally. What a tragic waste it would have been.

    Lyme disease magnifies existing neurological symptoms. If you have a bad back, don't even imagine it on Lyme disease. Many of you don't have to imagine it. You are living it, and from what I know, will diminish and fade because you never knew it.

    My title is hard hitting, and it isn't meant for you. But the truth is, you probably haven't been checked at all. You've had the standard Lyme test which means nearly nothing. Moreover, it means less than nothing, since it is a death sentence for so many who are told they are negative, when they are not.

    I don't know whether the board certified internist is good or not. I know that I wouldn't even think of going to a doctor unless they had A LOT of chronic Lyme patients, and not unless they were willing to be very creative. They would have to come HIGHLY recommended.

    Where were you tested and by whom?

    I'm not suggesting that you have Lyme, but it is very unlikely that you have been properly evaluated for it. I AM suggesting that too many people here who think their problems originate from their spinal problems do in fact have them but that they are made DRAMATICALLY worse by Lyme.

    Folks will write; like the well-meaning Gemini and Suziee and yourself, giving a quip about how useful the information is, then life is warm and fuzzy right?

    Except those who do have Lyme (and other poor unfortunates that I do not know how to address) will go back to their couch and secretly fantasize about things other than living. They may trudge into their GPs office, who will test them with the standard useless tests, tell them what the centers for disease control have to say on the matter, ask them the same useless questions, tell them the same wrong and useless information.

    Ok, you need back surgery and you don't have Lyme, or you have some disk or spinal problem that is very real and again; you don't have Lyme then (respectfully ), leave this thread. I'm not interested in hearing an opinion on whether I'm a good guy, or getting a quip from you that obscures the topic.

    The real irony will be if I'm booted out of the site altogether. We can't after all have a rabble rouser who claims to be getting cured ruffling the feathers of "the community"

    But if you've got "symptom cocktail" in which you never could have imagined the diversity of hell you are encountering ever coming from one place, then do some research.

    I hate to direct you even to the Lyme sites because they too have "enthusiasts" who actually seem to be excited about having the disease. They know all the Lyme doctors names, set all the rules of play on the site, etc.

    But I was brought to my Lyme doctor by someone who had Lyme and was cured. Although she had a different doctor she introduced me to mine.

    I'll never recommend or mention a doctor. If you investigate this and see the secrecy related to Doctors who treat Lyme outside of the "traditional methods" you will be blown away.

    Dig deeeep, dig deeeeeeeeep! Try to watch a movie called "under our skin".

    Folks, my life has been tranformed. Most doctors would say that my recovery and perhaps all my symptoms are and were all in my head...yeah, yeah, right. While you're rummaging around type the words "Michael J. Fox Lyme" into your browser.

    Its like in one of my favorite movies in which a comparison to Alice in wonderland is made "do you want to find out how deep the rabbit hole really is?"

    Go to lymenet.org, to find out more. Avoid the hype and ridiculous comments on that site, but listen to those who are reasonable. Open your mind, think!

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  • Your comment is a good one. Some people might pursue what I'm suggesting and spend a lot of money, wasting it.

    It is probable that some people would even be treated for the disease, without having it.

    If I inspire one person to take a wrong path, how bad that would be. If through inaction I do not help someone I could have, once again; how bad that would be.

    Months ago I kept a diet log, a "body phenomenon" log, and spent my time switching laundry detergent, hanging upside down, gaining weight, and sadly moping.

    Do not get your hopes up, because I never did. I still don't. I just try to live fully each day. I am living more fully than I ever thought possible. I had even pretty much given up my sex life 8 months ago.

    Doctors can save, doctors can be cruel. Do some research
  • Here's another link that provides information somewhere on the scale between useful and useless. I'll return in a few days

  • I'm glad you were able to sort your problems out and am happy for you. You are very passionate about your views, and I know you're trying to help people.
    You must understand that a lot of folks here have multiple problems on top of their spinal ones. I know you can relate. We are not enthusiasts and I think I can speak for some here that we do have a right diagnosis, based on clinical, neurological, and history, backed up by imaging. I myself been tested in the past years for a lot of things by a rheumatologist, and I do have an autoimmune disease which began way before my back problems. Is it aggravating things for me, I don't know. If doctors thought so, they'd send me for another consult.
    We are just a community of chronic back pain sufferers who support and uplift each other. We learn from others as well, and welcome ideas and discussion. But we speak from our experiences and there are a handful of nurses and a couple doctors here, who are going through the same as well.
    Right now I am distracting myself from awful pain this early afternoon when I felt a pop in my back, and pain that shot down to my foot, with a rush of adrenaline that made me nauseous. I read these forums for comfort and I know I'm not alone in my suffering.
  • I'm in bad pain right now and I don't intend on coming off grouchy. Thanks for your understanding
  • While I know that Lyme is a real disease,it does not discount our other illnesses and diseases.You cannot take a herniated disc for instance and call it lyme disease.

    Your enthusiasm is great,and kudos to you for finding the answers to all of your worries.

    You mentioned that you would never mention a Dr in your posts,but in your very first post you said "You might start by finding the symptoms of Lyme as provided by a Dr. Burrascano. There are about 72 symptoms on the list."

    A CT here for one purpose.

    Just pointing out the obvious.

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