Saturday, April 14, 2012

Thoughts on the Dr. Phil Episode

Just a random thought before I talk about Dr. Phil. 

For twenty-nine undiagnosed and misdiagnosed years with Lyme and its coinfections, I was accused of making it all up. Now that I have a long list of legitimate diagnoses I could uphold with verifiable evidence in a court of law, I would think it would put an end to the dismissals and accusations by loved ones. I would think that proving I have cork-screw spirochetes making a home of my brain would merit some sort of, oh, at the very least, acceptance or tolerance, of my quirky symptoms.

But, no. Some people still want to say it's in my head. They still want me to "just get out more". They still think my aches and pains are a cry for attention. And now they have a whole new set of ammo to launch — they think I'm being silly by watching my diet, avoiding allergens and chemical triggers, and even by treating my condition. Apparently I ought to stop all my treatments and just give up, and that will be my cure!

No. I have patience to see me through this. I am seeing results. They are slow to come, but I am peeling away layers. I am not giving up just to satisfy somebody's ignorance. Remember, I'm keeping the end goal in sight. Someday I will know what it feels like to live a healthy life for the very first time, because I'm focused, patient, determined, and — yes, this matters, too — immune to bad advice. If I listened to the advice of all of these people (who don't know the first thing about healing a sick body) then I'd never get well.

 I won't give up on this path — just to deteriorate further — simply because people don't understand it. I want to have energy (and children!) someday. Eye on the prize. I guess, in slang terms, "Haters gonna hate", and that's really what it is... some people will find any excuse to point fingers or roll their eyes. Because that's what they want to do. It has nothing to do with me and everything to do with them.


Anyway, onto the Dr. Phil show. Sorry that rant was longer than I meant it to be.

Yesterday, the Lyme community finally got some long-awaited acknowledgment by a mainstream celebrity, none other than Dr. Phil! He only spent half of one show talking about Lyme disease, and in that half hour he touched briefly on the controversy behind this disease. For the general public, who is overwhelmingly oblivious to true Lyme disease (and I say "true" because their impressions of the disease is far from its reality), this was a great planting of the seed..... it was a "hello", a whisper of an introduction, that will tuck itself away into the folds of the brains of his regular millions of viewers; and as the Lyme epidemic grows, and other information sifts its way into the mainstream, we will all become more and more familiar with it.

 And people will finally consider that their aches and pains and chronic sense of malaise could actually be what they were always convinced it wasn't.


And they will realize that you don't even need a tick bite to have Lyme. (Dr. Phil didn't get into that, or many details, really.)


 And more doctors will start treating Lyme properly. And we will have easier access to those doctors.


 And guidelines for proper diagnosis will be revised so that blood tests are no longer exceedingly "negative".


 And insurance companies will finally be forced to cover the cost of our treatments. And there will be many lawsuits. And lawsuits against the insurance companies
will be won. Maybe not tomorrow, but at some point.

 All of this will have its day someday.


 History teaches us that there is no progress without conflict; that battles must be fought, and fought hard, before true change is seen. Think about it. Every cause, every effort — from ending slavery to women gaining the right to vote — had its strong opposition, its critics. But truth always prevails. It can take years, decades, a century. It can take many, many lives. It causes a lot of pain and torment. But goodness and truth always prevail in the end.


 And so, all of the progress and awareness yet to be made when it comes to Lyme disease had to start somewhere. Dr. Phil played a part in its start. So, kudos to his team for giving this subject any attention at all.


 But, the problem I have with the depiction of Lyme disease on
 Dr. Phil (and the documentary Under Our Skin) is that the disease is painted as one of intense pain and seizures that requires intravenous antibiotics for recovery. The guests pointedly speak of their joint pain, play graphic home-made videos of their seizures, and display their ports for administering i.v. antibiotics.

 For many — if not most — Lymies, including my roommate Kathryn, intense pain and seizures have been two debilitating symptoms, and intravenous antibiotics are required, usually administered through a port. I don't deny that this is necessary for many Lymies.


 The problem is, if someone had shown me Dr. Phil's episode on Lyme disease and 
Under Our Skin before I was ever diagnosed with Lyme disease, I would have certainly dismissed myself as a potential Lymie. I would have said, "But I don't have chronic pain or seizures like the women on this show and movie."

 And now that I'm treating myself for Lyme, I don't require a port or i.v. antibiotics, but rather, I use an integrative protocol that combines oral antibiotics with potent anti-microbials, anti-parasitics and anti-virals, both pharmaceutical and herbal. So, I feel that these televised depictions are somewhat limiting in the information they offer.


 Since Lyme is "the great imitator" of so many different symptoms, it wouldn't be too hard to find a dozen Lymies who each present with their own unique set of symptoms. Implying that joint/bone pain and seizures are its main symptoms is risky, for it may only support
undiagnosed neuroborreliosis sufferers' claims they do not have Lyme (when in fact they do).

 As I've mentioned throughout this blog, my symptoms have been mostly neurological. My most bothersome and common symptoms include extreme fatigue, weakness, anxiety and panic disorder, mood disorder, brain fog, left-brained (calculative) learning impairment, memory problems, ADD/ADHD, chronic nausea, and congested lymph and respiratory symptoms. I get several other symptoms on a semi-regular basis, too, but these are the main ones.


 Lyme finds your weakest organ or system, and attacks it. If your digestive system is weak due to poor diet or food allergies, but your cardiovascular system is strong because you exercise daily, and you suddenly acquire Lyme disease from a tick or blood transfusion (yes, the latter has been reported), then you might end up with really bad irritable bowel syndrome and nausea as your main symptom. The borrelia can attack your endocrines, your nervous system, your gallbladder, pancreas, liver, kidneys, adrenals, lungs, mucosa, intestines, blood, muscle, bones, brain, skin, virtually anything!


 There are also hundreds of thousands, if not millions, of undiagnosed people with chronic Lyme disease whose symptoms are relatively mild, or at least not intrusive enough to prevent them from performing their regular daily tasks. These people still go out, socialize, work their daily jobs, clean their houses and function well enough that they have no reason to find a Lyme literate doctor to run a Lyme test. But they are susceptible to colds and flus. They feel "icky" all the time. They might not sleep well at night. They might be mildly depressed or be picky eaters. They might get migraines or headaches more often than most people.


 My point is, Lyme isn't only the extreme portrait of seemingly-near-death pain and anguish requiring ports and i.v.s that it has been painted to be. It certainly is those things for many people, but for many it isn't, and for many (with varying symptoms) alternative non-antibiotic therapies have been helpful, such as herbal supplements, ozone/oxygen therapy, rife machines, and Advanced Cell Training.


 I welcome any comments about the Dr. Phil episode or what I wrote in this blog. Well wishes and continued thanks for following my blog!


5 comments:

  1. I saw the Dr. Phil episode, and while I agree that it’s critical that this issue be “mainstreamed,” I found it unsatisfying in a number of respects.

    First, it was too short! I know that this show is for a general audience, but I would like to have heard more nuts-and-bolts discussion about why this disease persists, why the bug stays in the system or what the “strains” of Lyme are. The male doctor offered no clear explanation as to why he believes chronic Lyme doesn’t exist, and his appearance was truncated. A secondary consideration for me was why three women (four, if you include the “Lyme-literate” doc) were pitted against a middle-aged man. It would have been useful to hear from a male “Lymie.”

    That said, the show did clearly establish that whatever chronic Lyme is -- or isn’t – the women presented are all grounded, responsible professionals who don’t seem to be in the business of making things up.

    It’s useful to have the controversy presented, but at some point, someone has to move the ball forward toward settling it. This blog may very well be one place that happens.

    Far from being a “victim” of chronic Lyme, you have shown extraordinary courage in sharing your story and taking us all along your road to healing. I know if anyone figures this out, as we used to say in radio, we're going to hear it here first.

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  2. Leila-
    Great post. I am thankful the Lyme topic was aired on Dr. Phil, but was a little disappointed also.
    One day, I do believe society will be forced to believe that chronic lyme exists. One day...
    Best wishes to you and your recovery,
    Ginny

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  3. Thanks for sharing your opinions Leila and helping to spread awareness! I agree with a lot of what you said. I think it was a great entry into mainstreams homes, but yeah...there needs to be more talked about with those of us who don't get better, from even long term abx. I was on abx for six years before turning to alternative treatments. I really think we need more research. We need to find out why some of us take so long to show any improvement and we need more awareness on the co-infections, viruses, and parasites that come along with Lyme. Lyme is never just Lyme. Sadly.

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  4. Rachael CranfieldApril 16, 2012 at 7:53 AM

    Thanks for posting this! Some of those thoughts crossed my mind because I don't have seizures and extreme pain. I have pretty much the exact symptoms of you. Bad anxiety and panic, nausea and diarhhea. But I also have joint and nerve pain, headache and back and neck pain. That's the worst of it for me.

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  5. I agree. These extremes get people's attention, and we do need that, but it can also scare people off, or make them think if they don't have those severe symptoms they don't need to bother getting tested or treated. Or if you say you have Lyme, they assume you're like the videos they saw, and since you don't look like that, they might think you're just claiming it for attention. I never even had joint pain until a couple months ago. Last year my family doctor (who is open-minded but not very literate) would ask if I had joint pain. When I said no, he'd ask in a puzzled way, "Then why do you think you have Lyme?" We got the country's attention, now the next step is to educate them. I think two things need to be featured: one is the broad spectrum of symptoms and courses the disease can take (not everyone gets a before b, etc) and two is the politics behind the controversy. I didn't understand why doctors were getting their licenses revoked until I saw Under Our Skin. People may not have two hours to watch that at home but Dr. Phil can at least give them a summary of that part.

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