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!

Social Studies

I've always been sickly.
So when I first got my chronic Lyme diagnosis in January 2011, I sent out a mass email to inform my friends that there was a reason for all my years of suffering from inane chronic illness. I essentially let everybody who mattered in my life know that I'd just found out I had late-stage Lyme disease and Hashimoto's thyroid disease. (I had yet to learn about the parasites or co-infections.) 

Sending that email felt like I was exhaling after decades of holding my breath. I could finally justify the embarrassing maladies to which they had all born witness — a constantly runny nose, stomach aches, my unathleticism, bad PMS, panic attacks, sweatiness and fevers, and eccentricities that often made me less "different in a cool way" than "different in an uncool way".  

After I sent the email, many of the people who truly mattered in my life wrote back to show support, and a few relatively new friends whom I hadn't yet had the opportunity to fully appreciate even stepped up to the plate to offer their help and care, and for them I am eternally grateful.

On the flip side, surprisingly, a few long-time girls whom I had considered very dear friends not only never responded, but have quietly disappeared from my life since then.

Others have questioned the legitimacy of my illness or disapproved of my treatment choices. Those who were quick to judge and criticize without trying to understand my choices are no longer a part of my life. One friend even stopped talking to me because her doctor repudiates my claims that Lyme disease exists in a chronic state (which is a fact that doctors astonishingly ignore much in the way they alleged HIV was psychosomatic until the 1980s).

There have been times I've wondered, if I had found out I had something more well-known, something the mainstream not only acknowledges but that also garners instant sympathy and compassion, like a brain tumor, breast cancer, or MS, would the non-reactive, non-supportive friends have reacted differently? 

I'm not dismissing or denigrating the plights of those with the aforementioned diseases, but I wonder, did the "disappearing" friends go quiet because they've never heard of late-stage, chronic Lyme disease? If they think of Lyme disease as not much of a big deal, sort of along the lines of chicken pox (which is about as detrimental as mainstream medicine paints Lyme disease to be), then could that explain their ambivalence? 

And if that's the case, have I done a poor job of explaining, informing, educating them over the course of the last year on the severity of Lyme disease and its co-infections? I've handed out copies of Under Our Skin, shared my blog on Facebook, shared articles, and conversed on the topic with many people, so if anyone's been paying any attention, they should know by now that Lyme disease is far more serious than mainstream medicine makes it out to be, and that I'm very sick.

Lamentably, life doesn't work that way. The people who won't listen, well, won't listen, and the people who do, do. See, my blog readers consist of far more already-in-the-know than people who unwittingly deny or ignore the topic — those who, thus, probably should be reading it.

Here's the thing. It's not about me, folks. It's about all of us. It's about your health, your loved ones, and a general sense of awareness.You or someone you know will undoubtedly be bitten in your lifetime; the prevalence of Lyme disease is skyrocketing like never before, and doctors still ignore it. This is a major problem. Hundreds of thousands of people are mistakenly being "treated" for "fibromyalgia", lupus, MS, ALS, migraines, arthritis and other conditions that were actually caused by the borrelia spirochete. 

(Note: Not every person with lupus, MS, or ALS has Lyme, but a large percentage of them may think they have lupus, MS, or ALS when they actually have Lyme. Doctors are notorious for this misdiagnosis.)

If you think I'm making this up, or that it feels good for me to exaggerate in an effort to get my point across, I'm sorry to say you're wrong. This can't be wished away, and it certainly shouldn't be ignored anymore.

I'm writing this with two kinds of people in mind: (A) The ones who claimed to be life-long friends, and for whatever reason, stopped talking to me once news of my illness broke, and (B) The ones who refuse to accept that Lyme disease is incredibly serious and multi-systemically damaging. The latter group believes that Lyme disease is treatable with a simple course of antibiotics — and many of them still believe I overdramatize my symptoms.  

I do recognize that humans are busier and more distracted than ever by an overabundance of informational stimuli, so I'm not faulting every person for — God forbid — not reading my blog. Who am I to say that what I share bears more value over the causes to which people choose to ascribe their attention? By no means do I expect every person on my Facebook page to stop and listen to what I have to say. But it would certainly be nice if the two types of people mentioned above would.

Ultimately, it's not about me or my need for sympathy or attention. I live a quiet life out of the limelight (no pun intended!) and too much attention even makes me uncomfortable.

All of these lessons and in-my-face doses of reality have had some unexpectedly positive side effects, too; going through all of this has helped me to not take others' behaviors so personally, learn to let go, and even caused an epiphany of sorts regarding who I am.

The combination of clearing my brain of toxins, reaching the maturity that comes with hitting thirty, and doing things my way for a change has led to an unprecedented sense of peace and comfort with my life. After a lifetime of trying to please others and doing the things I thought I was supposed to do, I've finally embraced the fact that I am an unapologetically unique individual.

So, my somewhat embarrassing confession is: I'm inherently anti-social. My favorite activities are one-woman endeavors including gardening, writing music, illustrating, researching disease, going for walks, taking road trips, playing with animals, watching movies, reading books and, of course, blogging. I'm an anti-social and solitary creature. I'm not going to pretend otherwise.

Yet, for nine out of the last ten years, I've been a scenester, living a social life, working in social fields, trying to be everyone's friend, and painstakingly seeking everyone's approval. That kind of lifestyle only guarantees friendships of higher quantity than quality.

I'm now realizing that social settings have always been uncomfortable for me, but I thrust myself into them because I never even considered the alternative. And almost every single time, the stimuli — noise, physical exertion of excess walking or standing, small talk, parking in San Francisco, and loud music — put me over the edge. My brain gets fatigued, my body falls apart and my symptoms start to flare.

At the end of the day, I must avoid as much stress and trauma as possible.

And so I've made a choice. I've made the choice to focus on myself and spend my good days doing the things I enjoy. As a result, something remarkable has happened: I'm comfortable being me. I'm enjoying my good days. I'm happy.

I'm happy. Wow.

And yet, there's a tradeoff. In return for my therapeutic reclusiveness, I hardly see my local friends anymore — the ones I have left, anyway. Friends still stop by from time to time, and I do still get the occasional text message checking in on my condition, but they've all become less and less frequent with time.

It's not that I fault anyone for this, because (while I'm communicative on Facebook and the phone), I'm deliberately reducing what most people deem as desired, natural human interaction. Fallout is to be expected.

I'm not saying friendship is unimportant, or that my solitary lifestyle should be void of human relationships. Thanks to the Internet, I keep in frequent touch with my two best friends — one of whom lives 2,000 miles away and the other of whom lives 8,000 miles away (so I couldn't hang out with them even if I wanted to) — and I've also been lucky enough to meet a host of interesting, intelligent, endearing people online who fight this battle too.

But at the end of the day, I turn off the computer. I turn off my phone. And I go to bed with my cats. Happy.

I still feel unwell more often than not, and I still have a long way to go. But I'm so much wiser because of everything I've gone through. And I know who my friends are. And even though we don't see each other very often, they're always in my heart (as cheesy as that may sound), and I know they're not going anywhere.