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In the midst of my continued struggle to overcome what to me HAS to revolve around tick-borne illnesses, I fully realize that the lack of a straightforward path affects far more people than myself. Any gain or loss often gets shared because the lot of us share our struggles and report on what helps and what fails. Of course, because this illness possesses a great deal of variation, a singular set of rules on these do not universally apply. We can only endeavor to apply what seems to best fit our individual situations from what resonates from someone else's experience to our own.

Yet why this is so and remains so has as much to do with the politics and economics of tick-borne illness as any unique characteristics of it to an individual patient.

That is, the official bodies like the Centers for Disease Control (CDC) and Infectious Disease Society of America, as well the insurance industry which shapes and benefits from them, all have collaborated to say persistent or late stage Lyme/Co-infections does not exist. The supposedly educated journalists covering them ape the same language, even when their own work could call this into question.

Here's my example: Some months ago, a writer for Scientific American, one who later claimed independent knowledge on the subject, authored a piece comparing the spirochete of Borrelia Burgdorferi (or Bb) to that which causes Syphilis (i.e., Treponema pallidum). Since both share the same shape, they move very similarly, relying on the ability of a kind of corkscrew propulsion. I know, that is not a very precise description.

But their abilities to move, despite the obvious similarity, are not the same. The key for me came when the author described what happened in a body with these spirochetes inside of it. The spirochete causing Syphilis slows down when it traverses more viscous tissue, lacking torque or thrust to proceed unencumbered.

Bb behaves differently. In fact, the Lyme spirochete not only does not slow down in more viscous tissue, IT SPEEDS UP. The implications for this contrasting behavior should be striking. How can the two be the same? How does the issue of propulsion affect diagnostic testing? How does it affect treatment or "cure"? Who does one kill a moving target that is capable of being more evasive?

The first commenter asked about treatment of Lyme versus Syphilis. The author gave the same tired CDC-based commentary about the "short course of antibiotics" being curative in both. No acknowledgement of any problem, no reason why they are the same. I immediately question this and she reaffirms having "the latest" information.

I use her own article to support my view and ardently press forward as to how she could endorse that. Well, she did not engage me. No, instead, SHE DELETED MY COMMENTS. No independent thought. I guess the deletion just left me as seeming to be yet another "anti-scientific" crank. To me, it seems to question medical experts, even when they are more company shills than unbiased scientists, gets labeled and dismissed.

This is why without even knowing all the facts, I am ready to listen to those who take issue with the multiple vaccine schedule, among other aspects. I recognize the goading and bullying, which is not about science at all. The same thing occurs with GMO food products, including the bullying and castigating of those who question the usage as "too stupid to know what's in the food." When a former editor of the New England Journal of Medicine questions the reliability of what is published, I listen, too. "Paid science" may be more pseudo-science than science. There sure can be unhealthy questioning of authority; I've seen my share of it whenever some crank on the internet thinks he knows more about history than a PhD who's published on the exact subject. But there is also healthy and necessary questioning, especially when information is slanted or cherry-picked to privilege a given position.

I think that is happening here with Lyme and the other tick-borne illnesses. "Journalists" no longer question; they merely take stenography. I also have a BSJ in journalism and I know at least one of my former professors would be spinning in his grave if he got wind of this malpractice.

Since the progress for many if not most of those with tick-borne illnesses is hampered by this current situation, I have started a petition on whitehouse.gov to try to address the problem. I am calling for the creation of a type of blue-ribbon panel to look into the matter.

Find it here: http://wh.gov/...

I ask that such a group include those who have done groundbreaking work on the subject, like Dr. Horowitz and the lab Igenex (their sales director has impressive credentials himself) as well as some well-known people who have suffered from this illness, such as Amy Tan, Daryl Hall and Elena Della Donne.

Perhaps I was inspired by the "ice bucket challenge" for ALS. I believe that cause is worthy. But ALS is at least acknowledged as a disease. Lyme/Co-infections is often misunderstood and family/friends even sometimes have zero sympathy for the suffering person, as if the patient is faking or has some odd psychological problem.

A panel did not entirely change the way AIDS was treated in this country (after all, Magic Johnson resigned from it), but it did play a small role in changing the conversation and getting attention for a real medical problem. Likewise, Dr. Horowitz has said that he believes that advocacy and politics might be where he can best serve those with this problem versus continuing his practice of medicine. Already, he has gotten laws proposed that prevent (usually insurance company) complaints that jeopardize the medical licenses of doctors that follow the guidelines of the International Lyme and Associated Diseases Society (ILADS).

That step is one of many that helps those with tick-borne infections.  Let's do this. Sign and share, please.

Note: I edited the link to give the generic address provided to me.

Originally posted to lisakaz on Thu Aug 21, 2014 at 03:16 PM PDT.

Also republished by Lyme Disease Awareness.

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Comment Preferences

  •  signed (4+ / 0-)

    I did sign the petition...now we need to contact 99,000 of our friends.

    Where in the Constitution does it say: "...on behalf of corporate interests" ???

    by sillia on Thu Aug 21, 2014 at 03:54:53 PM PDT

  •  I've had RMSTF twice (4+ / 0-)

    and the second time it took more than a short term regimen of antibiotics. My neurologist told me it would take me at least two years to recover and it took four.

    I am so sympathetic to anyone who gets a tick-borne infection. I've never been sicker.

    I'll check out the petition. P

    "When it's over, I want to say: all my life I was a bride married to amazement." Mary Oliver

    by weezilgirl on Thu Aug 21, 2014 at 04:08:42 PM PDT

  •  Thank you (4+ / 0-)

    for checking out the petition, it's much needed.
    I had to look up RMSTF, oh yeah, Rocky Mt Spotted Tick Fever, so sorry! Four years is a long haul, that's how long I've been treating lyme & co. It's hard to describe to anyone who hasn't been through this!

    Where in the Constitution does it say: "...on behalf of corporate interests" ???

    by sillia on Thu Aug 21, 2014 at 04:37:01 PM PDT

  •  I post this on every Lyme diary (1+ / 0-)
    Recommended by:
    lisakaz

    and for some reasons, nobody wants to believe it. Antibiotics do not cure Lyme. It hides, it mutates, and it reemerges later, often with symptoms that are not diagnosed as Lyme and are treated as another mystery ailment, e.g. MS.

    I have had Lyme at least 4 times. The first two I got my antibiotic shots and got better. A couple of years later, I started getting weak and tired. I thought it was just age. My wife convinced me to see a local Homeopath who specializes in Lyme. It took 3 months and about 12 remedies, but the symptoms disappeared, and I was myself again. According to the Dr's tests, I was clear of Lyme, the coinfections, and parasites. This was confirmed by my family MD from lab tests.

    This year I was bitten by deer ticks at least 6 times. A couple of the bites showed the characteristic round spreading pattern. After the first of these 2, I went to the Dr. and started treatment. The second one swelled for a couple of days and then went away. I've been taking the remedies for about 2 months now, and am much better. This is so familiar by now that I can tell when I'm infected - though not quite when I'm almost cured. For that I depend on testing. I have another month to go. But I do feel a lot better.

    He says he can't cure everybody, but everybody I know who has been treated by him is very happy.

    Disclaimer: This is not a scientific analysis. I have not done any independent testing. But for somebody who is lost in this medical maze, I recommend it highly.. Can other homeopaths do this? Don't know. Ask one. If your homeopath wants a reference I will supply it.

  •  I'm with you- especially with your own example. (4+ / 0-)

    I went looking for whether or not the two were similar the moment I read that Lyme is a spirochete. The answer should be instant, I thought. But no, apparently the two behave very differently in similar circumstances, is what I managed to get out of a scientific article I waded through... so yes, why doctors aren't reading this stuff if I can, still amazes me.

    And I worry about the ALS stuff because now it's becoming the one that gets pinned on everything. My friend's daughter was ill with a virus and then shortly after suffered weakness then progressive paralysis from the toes up.
        Sounded to me like guillain-barre syndrome and I told my friend that. But the daughter went to the ER, and they sent her home with "well you probably have ALS, so you should go home & get your life in order."
        My friend & her daughter were devastated, thinking the worst. Then, against all speculation, she began to get better, and they told her no, it was something called guillain-barre... No, I'm not an expert, but I knew what was not ALS, and they should have too, and they never should have speculated that to her the way they did.

    We are all pupils in the eyes of God.

    by nuclear winter solstice on Thu Aug 21, 2014 at 06:58:14 PM PDT

    •  Wow (3+ / 0-)

      Should be malpractice to randomly tell an ER patient with such a diagnosis. How can an ER say that? What tests do they run? Awful. I'd sue their butts off.

      Hope she is getting good care now.

      I couldn't believe that writer was passing herself off as so knowledgeable when she failed to follow the logic of her own article. If the to behave differently, how are they both the same in terms of the ease to address/cure? When she started deleting my comments, I was very angry. Seems to me that's what someone threatened does who has no answer and cannot stand what is staring her in the face -- she's an idiot.

  •  I have a different, but also controversial (2+ / 0-)

    condition as to the degree it is caused by bacteria.  When one takes a careful look at the medical literature, as I have, the shoddy quality of research that wrongly results in the "no bacteria" canard is quite appalling.  PM me if interested in details.

  •  Well Done, and I agree with Marcia Angell who (2+ / 0-)
    Recommended by:
    lisakaz, churchylafemme

    quit the New England Journal with the comments you made; I also agree that healthy and respectful questioning of dogma may send us on an entirely new and better path in many areas of science and medicine.

    I'm watching a rather quick revolution in dietary recommendations, so other areas should at least be revisited now and then.

    I too have Borrelia and co infections and  have been through several evolutions of treatment thinking and practice.

    Borreliosis and coinfections also can cause Progressive Polyneuropathy, which I clearly have. The NIH has on its own pages said that "Lyme" sic. can frequently cause this.

    Because of late diagnosis (I have Fibromyalgia and Chronic Fatigue - symtoms of Bb and co-infections) I had multi year delayed diagnosis and treatment. Eventually so impairing my immune system, I achieved the Ideopathic (but we know the culprit) Progressive Polyneuropathy which looks like MS, ALS or Parkinsons depending on the day.

    I am now receiving two back to back every three weeks IV infusions of Immunoglobulin G 25 grams at 10% solution. It's $10,000 a treatment. Now wouldn't it have been cheaper to treat with very inexpensive anitmicrobials, hyperbaric oxygen, and supportive therapies until resolved.

    I have been in remission two times, and essentially except for fatigue, have been free of allergies, immune system problems, and could live a decent life. Now I'm back to fighting my way up for the third time.

    IViG is making a huge difference, and I will be able to start taking meds because my immune resistance to any med, supplement, pain reliever, foods, is going down by the week.

    Thank you for your efforts to educate us all and to provide a forum for discussion.

    Science is hell bent on consensus. Dr. Michael Crichton said “Let’s be clear: The work of science has nothing to do with consensus... which is the business of politics. Science, on the contrary, requires only one investigator who happens to be right,”

    by Regina in a Sears Kit House on Fri Aug 22, 2014 at 04:19:42 PM PDT

    •  I relate to a lot of what you wrote (1+ / 0-)
      Recommended by:
      churchylafemme

      Certainly, I related to the polyneuropathy, the similarity to MS, ALS and Parkinsons. In fact, just today I had a near accident when I was about to stagger backward and faced either slamming a door on my fingers or hitting my head on something hard. I chose the latter. In retrospect, I made the right choice. I didn't black out; I just kinda busted a metal fixture for the TP. Might be fixable.

      I just don't have the funds for the treatment you mention. I'm trying to deal with Babesia first.

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