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!
Saturday, April 14, 2012
Monday, April 2, 2012
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.
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.
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.
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?
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.
Sunday, March 18, 2012
Mobilizing
I recently added to and edited an old blog entry that discusses my struggles with being employed while chronically ill. If anyone is interested in reading it, you can find it here.
I keep this blog for three reasons: (1) To journal my experience for my own therapeutic sake, (2) To update friends and family on my progress, (3) To help others who may be struggling, through Lyme education and to offer the comfort of knowing nobody is alone in what they go through.
I never expected this blog to gain popularity but it's reached a wide audience in the chronically ill (Lyme and CFS) community. It accrued 10,000 page views just in time for its one-year anniversary, and the feedback I've received has been overwhelmingly positive. So, a big thank you to my old friends, new friends, and strangers who are reading my blog. I've also been asked if it's OK to share the website on your Facebook pages, and yes, absolutely. The more I can get my story out and teach the world what's largely been ignored, the better.
Getting back to where I was late last year has been hard, but I'm getting there. I still feel like stopping my treatment for the full month of January (for my stomach to heal) was a setback I haven't entirely made up for yet. But I'm definitely trying to make up for that lost time, and I've been very dedicated and determined lately.
The name of the (my) game, most recently, has been mobilizing toxins and detoxing. Mobilize, detox. Mobilize, detox. And repeat. Heavy metal toxicity and candida both have always been a huge issue for me — huge! (And most people with Lyme disease also have heavy metal toxicity and candida.)
So I've been taking more minerals (because minerals knock the metals loose) and I've been consuming gut-healing foods. Taking bits and pieces from various, well-known, healing diets like the juicing diet (known for its nutrients and enzymes) and the GAPS diet (known for healing the gut), I've been using my new Jack Lalanne juicer 4-6 days a week to drink organic blends of kale, cucumber, carrot, celery, lemon, and green apple juices, and building up tolerance to fermented foods and kefir.
Last week, I did a bit too much at once — upped my minerals, started a new probiotic supplement, drank some kefir, switched my fish oil from a salmon source to an anchovy source, took some RNA drops and gave myself a methyl-B12 injection all within 36 hours of each other. Then, bam, I paid the price! I spent two whole days in bed, unable to walk further than the toilet, with a blistering migraine and nausea.
Those days are really hard, and so discouraging. I have to remind myself that less is more. Healing can be compared to trying to push too much of something through a tiny hole. Layering more stuff on there or applying more pressure won't make it flow through the hole more quickly. It just clogs it. We are sensitive creatures who can go overboard too quickly. Slow and steady beats this thing.
Laying in bed feeling like death for those two days, I wasn't sure if one specific thing had triggered the migraine and nausea or if it was a combination of everything I tried to do at once. It's hard to distinguish between the feeling of knocking metals loose and killing candida, for example; or, even an allergic reaction, which I considered was a possibility in regards to the new fish oil source... am I allergic to anchovies? Sometimes all of this is too complicated for me to figure out.
Without getting too specific, I will say I definitely released a lot of metals and candida into my toilet. The evidence was quite, umm, visible for a few days there. If anyone wants any details, they can email me!
In my last entry, I mentioned I'd be starting Amy Yasko's RNA & Methylation protocol and Shoemaker's CSM protocol soon. I've started the former, but not the latter yet. Remember, slow and steady. Too much at once knocks me out, and when I'm totally bedridden, I'm of no good use to myself. I'll let you all know when I start the Shoemaker stuff.
Mobilizing toxins sure threw me for a loop last week! The unpredictability of each day never ceases to amaze me — after I spent two days completely bedridden, the nausea, pain and fog lifted and I had this uncanny, transient sense of elation and energy. I wish the lows didn't have to be so low and that the highs weren't so fleeting.
But as I continue this journey, I have to keep my eye on the end goal: wellness, normalcy, energy to last a full day, socialization, stability, starting a family, stuff like that. All the little things that everybody seems to do without much of an effort. That's my end goal. It gets me through the tough times.
This focus also helps me tolerate some of the ignorant and misguided comments I sometimes hear from friends, such as, "Why are you on these healthy diets? Just eat whatever you want," and "Don't spend all day in bed. Make yourself get up and get out," and, "You're lucky you don't have to work".
To which I would respond, in order, "I can't just eat whatever I want because my body can't tolerate most of the fake-foods you eat," and "I get out and am productive on my good days, but on my bad days it feels like I have three flus — spending the day in bed is not some weird depression or laziness!" and the last commenter, well, was deleted from my Facebook page for that comment.
And if I were to eat whatever I wanted, from donuts and coffee (a favorite duo!) to fast food and pizza, my immune system and gut wouldn't heal, and I'd never reach that final destination. Persistence and abstaining are commitments that will lead me there in time. But recovery from three decades of illness is not an overnight thing.
Keeping my eye on the prize. The end goal. It gets me through this. The thought of health and normalcy, and the fact that it's not this unattainable, delusional fantasy, but rather, a real possibility if I'm consistent — it keeps me chugging along. I'll get there.
I keep this blog for three reasons: (1) To journal my experience for my own therapeutic sake, (2) To update friends and family on my progress, (3) To help others who may be struggling, through Lyme education and to offer the comfort of knowing nobody is alone in what they go through.
I never expected this blog to gain popularity but it's reached a wide audience in the chronically ill (Lyme and CFS) community. It accrued 10,000 page views just in time for its one-year anniversary, and the feedback I've received has been overwhelmingly positive. So, a big thank you to my old friends, new friends, and strangers who are reading my blog. I've also been asked if it's OK to share the website on your Facebook pages, and yes, absolutely. The more I can get my story out and teach the world what's largely been ignored, the better.
Getting back to where I was late last year has been hard, but I'm getting there. I still feel like stopping my treatment for the full month of January (for my stomach to heal) was a setback I haven't entirely made up for yet. But I'm definitely trying to make up for that lost time, and I've been very dedicated and determined lately.
The name of the (my) game, most recently, has been mobilizing toxins and detoxing. Mobilize, detox. Mobilize, detox. And repeat. Heavy metal toxicity and candida both have always been a huge issue for me — huge! (And most people with Lyme disease also have heavy metal toxicity and candida.)
So I've been taking more minerals (because minerals knock the metals loose) and I've been consuming gut-healing foods. Taking bits and pieces from various, well-known, healing diets like the juicing diet (known for its nutrients and enzymes) and the GAPS diet (known for healing the gut), I've been using my new Jack Lalanne juicer 4-6 days a week to drink organic blends of kale, cucumber, carrot, celery, lemon, and green apple juices, and building up tolerance to fermented foods and kefir.
Last week, I did a bit too much at once — upped my minerals, started a new probiotic supplement, drank some kefir, switched my fish oil from a salmon source to an anchovy source, took some RNA drops and gave myself a methyl-B12 injection all within 36 hours of each other. Then, bam, I paid the price! I spent two whole days in bed, unable to walk further than the toilet, with a blistering migraine and nausea.
Those days are really hard, and so discouraging. I have to remind myself that less is more. Healing can be compared to trying to push too much of something through a tiny hole. Layering more stuff on there or applying more pressure won't make it flow through the hole more quickly. It just clogs it. We are sensitive creatures who can go overboard too quickly. Slow and steady beats this thing.
Laying in bed feeling like death for those two days, I wasn't sure if one specific thing had triggered the migraine and nausea or if it was a combination of everything I tried to do at once. It's hard to distinguish between the feeling of knocking metals loose and killing candida, for example; or, even an allergic reaction, which I considered was a possibility in regards to the new fish oil source... am I allergic to anchovies? Sometimes all of this is too complicated for me to figure out.
Without getting too specific, I will say I definitely released a lot of metals and candida into my toilet. The evidence was quite, umm, visible for a few days there. If anyone wants any details, they can email me!
In my last entry, I mentioned I'd be starting Amy Yasko's RNA & Methylation protocol and Shoemaker's CSM protocol soon. I've started the former, but not the latter yet. Remember, slow and steady. Too much at once knocks me out, and when I'm totally bedridden, I'm of no good use to myself. I'll let you all know when I start the Shoemaker stuff.
Mobilizing toxins sure threw me for a loop last week! The unpredictability of each day never ceases to amaze me — after I spent two days completely bedridden, the nausea, pain and fog lifted and I had this uncanny, transient sense of elation and energy. I wish the lows didn't have to be so low and that the highs weren't so fleeting.
But as I continue this journey, I have to keep my eye on the end goal: wellness, normalcy, energy to last a full day, socialization, stability, starting a family, stuff like that. All the little things that everybody seems to do without much of an effort. That's my end goal. It gets me through the tough times.
This focus also helps me tolerate some of the ignorant and misguided comments I sometimes hear from friends, such as, "Why are you on these healthy diets? Just eat whatever you want," and "Don't spend all day in bed. Make yourself get up and get out," and, "You're lucky you don't have to work".
To which I would respond, in order, "I can't just eat whatever I want because my body can't tolerate most of the fake-foods you eat," and "I get out and am productive on my good days, but on my bad days it feels like I have three flus — spending the day in bed is not some weird depression or laziness!" and the last commenter, well, was deleted from my Facebook page for that comment.
And if I were to eat whatever I wanted, from donuts and coffee (a favorite duo!) to fast food and pizza, my immune system and gut wouldn't heal, and I'd never reach that final destination. Persistence and abstaining are commitments that will lead me there in time. But recovery from three decades of illness is not an overnight thing.
Keeping my eye on the prize. The end goal. It gets me through this. The thought of health and normalcy, and the fact that it's not this unattainable, delusional fantasy, but rather, a real possibility if I'm consistent — it keeps me chugging along. I'll get there.
Monday, February 27, 2012
Genetics: The Trump Card
The more I learn about my health, the less Lyme seems to be the main offender. Lyme, a.k.a. borrelia, is currently being stripped of his throne-wielding notoriety and being lowered on the list to say, the king's youngest brother, in this multi-lateral labyrinth of a castle that houses my health.
Earlier this month I added borna virus, rickettsia, XMRV and nasal staph (MARCoNS) to my seemingly infinitely-growing list of official diagnoses (see side bar at right for full list). But it's the latest realization that fascinates me the most — perhaps due to its deep-in-my-fiber unflappability, or its powers of pre-determination: my genes play a major role in this whole mess.
Yes, you heard me. My genes; my DNA. Obviously, you are each the product of both of your parents' genes. Whether you like it or not, their DNA came together to create you, and that DNA is powerful enough to dictate your likelihood of many things, such as excelling at math or arts, gaining weight, or acquiring a certain disease. In the argument of nature versus nurture, nature is certainly the heavyweight to which nurture must be tailored in compliance and with strategic forethought.
In short, I've just learned I was born with a high likelihood of developing what are coined "multifactorial diseases" (Amy Yasko, Ph.D.) and "biotoxin illness" (Ritchie Shoemaker, M.D.). Certainly, I could have — and should have — tailored my environment and diet while growing up, but instead worsened my toxic burden with poor lifestyle choices.
There comes a point in a chronically ill person's pursuit of health when genetics should be factored in for their power to solve health mysteries, or steer that person in the right direction, especially when notable progress is slow to be seen. In my case, the genetics results are astounding — though not entirely surprising.
Here are the details. I recently had two types of genetic profiles made up from my blood: The Dr. Shoemaker HLA tests for Lyme and mold susceptibility, and the Amy Yasko Methylation Panel.
Shoemaker DNA Testing
I've tested positive for Shoemaker's DQB1-3 genes that mark susceptibility to both Lyme and mold infections — and in the case of mold, I have three separate genetic predispositions to mold sensitivity/intolerance. Apparently, the "Lyme-susceptibility" gene and "mold susceptibility" gene have some overlap or opportunistic attraction to each other, so a lot of Lymies have the mold-susceptible gene. And when they live in moldy houses and eat moldy foods (i.e. cheese, bread, mushrooms, berries, beer) they won't respond to Lyme treatment. These genetically-predisposed people (myself included) generally have a hard time detoxifying their bodies of toxins in the way that healthy people naturally do via their lymph, kidneys, liver, skin — giving way to the term "biotoxin illness".
Scott Forsgren, a prominent expert on biotoxin illness and follower of Dr. Shoemaker's work, writes, "Some [genotypes] are susceptible to mold biotoxins while others are susceptible to Lyme biotoxins while still others are susceptible to both mold and Lyme biotoxins in what is termed a 'multi-susceptible' genotype. If the HLA DR test results in a combination that suggests any of these, it is time to better understand the 'Biotoxin Pathway' and possible treatment options. ...If a person is genetically susceptible to a biotoxin-associated illness, it is likely the case that the biotoxins themselves, rather than Lyme infection or mold exposure, are causing many of the symptoms being experienced. Even further, it is plausible to suggest that infection could be cleared, or the exposure entirely removed, and yet the remaining symptoms may be almost entirely due to circulating biotoxins. It comes down to a genetic predisposition which results in the body’s inability to remove these biotoxins. Long after the initial exposure or infection is gone, the toxins may live on. Understanding that core idea alone is profound!"
He continues, "There are specific genotypes associated with specific susceptibility to biotoxins. For patients with Lyme disease or mold exposure, approximately 25% of the population has a genetic predisposition which results in an inability to clear biotoxins naturally. Understanding whether or not one is in this population can provide key insight into the cause of illness. Though the result may suggest a genetic make-up which cannot itself be corrected, once known, specific interventions can be put into play that may significantly improve the outcome. ...For these people that are genetically incapable of clearing these toxic substances, biotoxins will continue to circulate within the body indefinitely and may reduce one’s chances of recovery. There is generally no 'selfhealing' in these cases without appropriate interventions."
Dr. Shoemaker's original research is a bit more technical: "Mold illness is essentially identical to Lyme in symptoms and chronicity. This observation is critical to understanding why some Lyme patients just don't get better with antibiotics... Mold illness doesn't get better with antibiotics. [You should] start with genetics, move on to loss of regulation of inflammation and then to the effects of unregulated inflammation (including silent colonization by commensal bacteria living in biofilms). Finally, correction of T regulatory cell abnormalities must occur before return to normal health can be claimed. In the end, if the inflammatory elements that are invariably abnormal in Lyme and mold...aren't identified and corrected the patients won't get better."
He goes on to say, "In the general population, the incidence of... mold susceptible haplotypes is 25% and for Post-Lyme susceptible is 21%. ...When a patient continues to experience illness symptoms and is shown to have genetic susceptibility, it is mandatory to understand that defective antigen presentation is ongoing and that production of a protective antibody/ies is NOT happening. ...There are inflammatory parameters that must be corrected in order for mold patients and Lyme patients alike to return to health."
Under the guidance of my LLMD, I will soon be heeding Shoemaker's advice and treating my biotoxin/mold illness with Cholestyramine, but first I will start the Amy Yasko methylation protocol, as outlined below.
Yasko DNA Testing
Like Shoemaker, Yasko provides DNA testing that examines the concept of toxic overload — but her special focus is on autism (as a lot of research supports the prevalent theory that autism is caused by a heavy toxic burden, ranging from infectious agents and viruses to heavy metals). Her protocol has worked wonders for scores of autistic children. In addition to those with autism, a lot of Lymies and chronically ill/fatigued people rely on Yasko's DNA testing to determine what is wrong with our "methylation" cycle and how to fix it.
Yasko defines methylation as a process that is "needed to silence viruses, to myelinate nerves, to make new T cells (so that we are not making auto antibodies, to respond properly to infectious agents and to reduce allergic inflammation), to make new DNA (i.e. to repair the gut lining), for neurotransmitters, for DNA regulation, detoxification of environmental toxins and the list goes on. It is critical to support any mutations in the methylation pathway so that it will function properly." When a person's body does not methylate properly, simply put, "Toxins come in but they don't go out. Instead they accumulate."
The Yasko Methylation Panel checks thirty genotypes and reports specifically where mutations are present among them. A heterozygous (single) mutation means that one allele is mutated, meaning one parent passed on the mutation, and it can present mild to moderate problems with the methylation cycle. A homozygous (double) mutation means both alleles are mutated, meaning the mutation was carried by both parents, and its problems and symptoms can be rather severe.
Of the thirty genotypes, I have eight heterozygous mutations, and two homozygous mutations. The most severe of my mutations — the homozygous — are called MAO A - R297R and MTRR - A66G. The other eight that turned up (heterozygous) are called COMT - V158M, COMT - H62H, VDR - Taq, MTHFR - C677T, MTRR - 11, BHMT - 2, BHMT - 4, and lastly, the one nobody wants to have, whether it's homozygous or heterozygous, the dreaded CBS - C699T. The other twenty were normal.
I will elaborate on a few, but not all, of these.
The last one, CBS - C699T, requires treatment before the others, so methylation stays in a state of disrepair until this is properly addressed. I am certain I inherited this one from my father, who cannot tolerate sulfur or sulfa drugs — as Yasko writes, "Sensitivity to sulfur products and sulfur containing antibiotics is often symptomatic of this mutation. A constant state of flight or fight as a result of chronic high levels of sulfur can also cause sympathetic versus parasympathetic overload. This cortisol response has a wide range of secondary effects in the body, including changes in magnesium/calcium, decreased levels of serotonin and dopamine... [and] blood sugar issues." (My sister also cannot tolerate sulfur/sulfa. Thank you, CBS mutation, for helping us understand why.)
One of my homozygous/double mutations is particularly telling: "MAO A R297R is involved in the breakdown of serotonin in the body. Like dopamine, serotonin is another neurotransmitter in the body. It is involved with mood, and imbalances in serotonin levels have been associated with depression, aggression, anxiety and OCD behavior. Since Mao A is inherited with the X chromosome and is considered a dependent trait it may not show standard inheritance characteristics in males. Since the X chromosome in males can only come from the mother, this means that the fathers Mao A mutations (or lack there of) does not play a role in their son's Mao A status."
That particular mutation, in conjunction with neurological Lyme disease, could explain why the worst symptom I have is related to mood and anxiety. This could also explain why my serotonin levels routinely come back from the lab as undetectably low. And the part about the X chromosome could explain why my sister and I have far more severe psychiatric problems than our brother. But, to be perfectly honest, it's really, incredibly difficult to differentiate between the many psychiatric-related illnesses, infections and mutations I possess. The borna virus, which I also have, is almost entirely psychiatric in nature. So I can't begin to postulate which of my ailments is the most responsible for my social anxiety, situationally induced panic attacks, mood swings and baffling phobias.
One thing I can say with confidence is that psychiatric illnesses are definitely not "in our heads". Depression, bipolar disorder, schizophrenia — they are being linked to either infections of the brain or genetic mutations more often than ever before. I wish more people understood that.
My two heterozygous COMT mutations (V158M, H62H) may play a role in some of my earliest behavioral quirks. Until high school, I was an eager-to-please, hyperactive child. Apparently COMT's "primary function is to help to break down dopamine. Dopamine is a neurotransmitter that is recognized for its role in attention, as well as reward seeking behavior. Dopamine helps to cause pleasurable feelings that aid in reinforcing positive behaviors and motivating individuals to function in certain reward gaining activities. COMT is also involved in the breakdown of another neurotransmitter, norepinephrine. The balance between norepinephrine levels and dopamine levels has been implicated in ADD/ADHD; in addition, dopamine levels are important in conditions such as Parkinson's disease. COMT is also involved in the proper processing of estrogen in the body."
Lastly, my MTHFR and MTRR mutations both lead to high levels of homocysteine, which is responsible for a wide range of inflammatory conditions, including heart disease and Alzheimer's disease.
In conclusion
It's fascinating to me that independent of any infections or diseases I may have acquired in utero or as a small child, my genetics predispose me to Lyme disease, mold intolerance, toxin buildup, inflammatory conditions, and mood imbalances. Since these predispositions significantly increase the likelihood of a person acquiring a specific disease in their lifetime, it takes far more effort for a genetically susceptible person to avoid certain illnesses through their lifestyle choices than it does for a not-susceptible person. But I didn't know that while growing up. In retrospect, I can see how my lifestyle choices — mainly a poor diet heavy with "fake" foods and sugar, unsanitary conditions and a bad habit of touching animals on several continents — have invited babesia, borna virus, mycoplasma fermentae, XMRV, candida and several types of worms to thrive in my body.
Furthermore, while Lyme disease is certainly a serious health matter that should never be ignored, I can now understand (thanks to Shoemaker and Yasko's research) why I've had a hard time recovering from Lyme. I've spent the last year on a valuable protocol that kills the Lyme spirochete, balances my thyroid and adrenal hormones, kills the parasites and viruses which are co-infections of Lyme, heals my gut, and detoxifies my organs to some extent. All of that has been important and will continue to be a part of my treatment.
But now I know my detoxification strategies barely scratched the surface because of an overload of biotoxins, mold, and a broken methylation cycle. Now I need to bring out the big guns. Shoemaker and Yasko both offer excellent and proven ways to bypass genetic mutations related to biotoxins and methylation — in short, they include cholestyramine, RNA drops, methyl-B12, folates, and glutathione. But I won't get into the treatment in too much detail. This blog post is already long enough to be a novel.
Knowing my genetic weaknesses empowers me in another way, too. If I should choose to reproduce, I will definitely ask my partner to have these genetic tests performed, because there is a very real and frightening chance that I could have a child with autism, Down's syndrome, Lyme disease and more — all dependent upon whether my mate shares some of my mutations. I guess it would be wise to pursue this early in any relationships that I see as potentially heading in that direction, since certain mutations would be absolute deal-breakers. I know that's sad. And I also realize that some of you might think that's taking it too far — love and compatibility should be enough, and I should let God do the rest. I understand that mentality, but I don't work that way. I absolutely want to be as smart as I can to lower my risk of having a child with autism or Down's syndrome, as I come from the school of thought that knowledge is power. Now that I have it, I can use the knowledge of my genetic mutations to my advantage.
In any case, adoption appeals to me more every day.
What else can I say? My parents' genes came together to produce some scary abnormalities, but my genetics aren't all burdensome. Thanks to my genes, I'm tall; my bones are denser and stronger than most people's and therefore don't break easily; there's no breast cancer in my family; and I have my mother's ability to write well and my German family's musical talent. That counts for something, too.
I hope this entry has been educational and even helpful to fellow Lymies who've hit a wall.
Earlier this month I added borna virus, rickettsia, XMRV and nasal staph (MARCoNS) to my seemingly infinitely-growing list of official diagnoses (see side bar at right for full list). But it's the latest realization that fascinates me the most — perhaps due to its deep-in-my-fiber unflappability, or its powers of pre-determination: my genes play a major role in this whole mess.
Yes, you heard me. My genes; my DNA. Obviously, you are each the product of both of your parents' genes. Whether you like it or not, their DNA came together to create you, and that DNA is powerful enough to dictate your likelihood of many things, such as excelling at math or arts, gaining weight, or acquiring a certain disease. In the argument of nature versus nurture, nature is certainly the heavyweight to which nurture must be tailored in compliance and with strategic forethought.
In short, I've just learned I was born with a high likelihood of developing what are coined "multifactorial diseases" (Amy Yasko, Ph.D.) and "biotoxin illness" (Ritchie Shoemaker, M.D.). Certainly, I could have — and should have — tailored my environment and diet while growing up, but instead worsened my toxic burden with poor lifestyle choices.
There comes a point in a chronically ill person's pursuit of health when genetics should be factored in for their power to solve health mysteries, or steer that person in the right direction, especially when notable progress is slow to be seen. In my case, the genetics results are astounding — though not entirely surprising.
Here are the details. I recently had two types of genetic profiles made up from my blood: The Dr. Shoemaker HLA tests for Lyme and mold susceptibility, and the Amy Yasko Methylation Panel.
Shoemaker DNA Testing
I've tested positive for Shoemaker's DQB1-3 genes that mark susceptibility to both Lyme and mold infections — and in the case of mold, I have three separate genetic predispositions to mold sensitivity/intolerance. Apparently, the "Lyme-susceptibility" gene and "mold susceptibility" gene have some overlap or opportunistic attraction to each other, so a lot of Lymies have the mold-susceptible gene. And when they live in moldy houses and eat moldy foods (i.e. cheese, bread, mushrooms, berries, beer) they won't respond to Lyme treatment. These genetically-predisposed people (myself included) generally have a hard time detoxifying their bodies of toxins in the way that healthy people naturally do via their lymph, kidneys, liver, skin — giving way to the term "biotoxin illness".
Scott Forsgren, a prominent expert on biotoxin illness and follower of Dr. Shoemaker's work, writes, "Some [genotypes] are susceptible to mold biotoxins while others are susceptible to Lyme biotoxins while still others are susceptible to both mold and Lyme biotoxins in what is termed a 'multi-susceptible' genotype. If the HLA DR test results in a combination that suggests any of these, it is time to better understand the 'Biotoxin Pathway' and possible treatment options. ...If a person is genetically susceptible to a biotoxin-associated illness, it is likely the case that the biotoxins themselves, rather than Lyme infection or mold exposure, are causing many of the symptoms being experienced. Even further, it is plausible to suggest that infection could be cleared, or the exposure entirely removed, and yet the remaining symptoms may be almost entirely due to circulating biotoxins. It comes down to a genetic predisposition which results in the body’s inability to remove these biotoxins. Long after the initial exposure or infection is gone, the toxins may live on. Understanding that core idea alone is profound!"
He continues, "There are specific genotypes associated with specific susceptibility to biotoxins. For patients with Lyme disease or mold exposure, approximately 25% of the population has a genetic predisposition which results in an inability to clear biotoxins naturally. Understanding whether or not one is in this population can provide key insight into the cause of illness. Though the result may suggest a genetic make-up which cannot itself be corrected, once known, specific interventions can be put into play that may significantly improve the outcome. ...For these people that are genetically incapable of clearing these toxic substances, biotoxins will continue to circulate within the body indefinitely and may reduce one’s chances of recovery. There is generally no 'selfhealing' in these cases without appropriate interventions."
Dr. Shoemaker's original research is a bit more technical: "Mold illness is essentially identical to Lyme in symptoms and chronicity. This observation is critical to understanding why some Lyme patients just don't get better with antibiotics... Mold illness doesn't get better with antibiotics. [You should] start with genetics, move on to loss of regulation of inflammation and then to the effects of unregulated inflammation (including silent colonization by commensal bacteria living in biofilms). Finally, correction of T regulatory cell abnormalities must occur before return to normal health can be claimed. In the end, if the inflammatory elements that are invariably abnormal in Lyme and mold...aren't identified and corrected the patients won't get better."
He goes on to say, "In the general population, the incidence of... mold susceptible haplotypes is 25% and for Post-Lyme susceptible is 21%. ...When a patient continues to experience illness symptoms and is shown to have genetic susceptibility, it is mandatory to understand that defective antigen presentation is ongoing and that production of a protective antibody/ies is NOT happening. ...There are inflammatory parameters that must be corrected in order for mold patients and Lyme patients alike to return to health."
Under the guidance of my LLMD, I will soon be heeding Shoemaker's advice and treating my biotoxin/mold illness with Cholestyramine, but first I will start the Amy Yasko methylation protocol, as outlined below.
Yasko DNA Testing
Like Shoemaker, Yasko provides DNA testing that examines the concept of toxic overload — but her special focus is on autism (as a lot of research supports the prevalent theory that autism is caused by a heavy toxic burden, ranging from infectious agents and viruses to heavy metals). Her protocol has worked wonders for scores of autistic children. In addition to those with autism, a lot of Lymies and chronically ill/fatigued people rely on Yasko's DNA testing to determine what is wrong with our "methylation" cycle and how to fix it.
Yasko defines methylation as a process that is "needed to silence viruses, to myelinate nerves, to make new T cells (so that we are not making auto antibodies, to respond properly to infectious agents and to reduce allergic inflammation), to make new DNA (i.e. to repair the gut lining), for neurotransmitters, for DNA regulation, detoxification of environmental toxins and the list goes on. It is critical to support any mutations in the methylation pathway so that it will function properly." When a person's body does not methylate properly, simply put, "Toxins come in but they don't go out. Instead they accumulate."
The Yasko Methylation Panel checks thirty genotypes and reports specifically where mutations are present among them. A heterozygous (single) mutation means that one allele is mutated, meaning one parent passed on the mutation, and it can present mild to moderate problems with the methylation cycle. A homozygous (double) mutation means both alleles are mutated, meaning the mutation was carried by both parents, and its problems and symptoms can be rather severe.
Of the thirty genotypes, I have eight heterozygous mutations, and two homozygous mutations. The most severe of my mutations — the homozygous — are called MAO A - R297R and MTRR - A66G. The other eight that turned up (heterozygous) are called COMT - V158M, COMT - H62H, VDR - Taq, MTHFR - C677T, MTRR - 11, BHMT - 2, BHMT - 4, and lastly, the one nobody wants to have, whether it's homozygous or heterozygous, the dreaded CBS - C699T. The other twenty were normal.
I will elaborate on a few, but not all, of these.
The last one, CBS - C699T, requires treatment before the others, so methylation stays in a state of disrepair until this is properly addressed. I am certain I inherited this one from my father, who cannot tolerate sulfur or sulfa drugs — as Yasko writes, "Sensitivity to sulfur products and sulfur containing antibiotics is often symptomatic of this mutation. A constant state of flight or fight as a result of chronic high levels of sulfur can also cause sympathetic versus parasympathetic overload. This cortisol response has a wide range of secondary effects in the body, including changes in magnesium/calcium, decreased levels of serotonin and dopamine... [and] blood sugar issues." (My sister also cannot tolerate sulfur/sulfa. Thank you, CBS mutation, for helping us understand why.)
One of my homozygous/double mutations is particularly telling: "MAO A R297R is involved in the breakdown of serotonin in the body. Like dopamine, serotonin is another neurotransmitter in the body. It is involved with mood, and imbalances in serotonin levels have been associated with depression, aggression, anxiety and OCD behavior. Since Mao A is inherited with the X chromosome and is considered a dependent trait it may not show standard inheritance characteristics in males. Since the X chromosome in males can only come from the mother, this means that the fathers Mao A mutations (or lack there of) does not play a role in their son's Mao A status."
That particular mutation, in conjunction with neurological Lyme disease, could explain why the worst symptom I have is related to mood and anxiety. This could also explain why my serotonin levels routinely come back from the lab as undetectably low. And the part about the X chromosome could explain why my sister and I have far more severe psychiatric problems than our brother. But, to be perfectly honest, it's really, incredibly difficult to differentiate between the many psychiatric-related illnesses, infections and mutations I possess. The borna virus, which I also have, is almost entirely psychiatric in nature. So I can't begin to postulate which of my ailments is the most responsible for my social anxiety, situationally induced panic attacks, mood swings and baffling phobias.
One thing I can say with confidence is that psychiatric illnesses are definitely not "in our heads". Depression, bipolar disorder, schizophrenia — they are being linked to either infections of the brain or genetic mutations more often than ever before. I wish more people understood that.
My two heterozygous COMT mutations (V158M, H62H) may play a role in some of my earliest behavioral quirks. Until high school, I was an eager-to-please, hyperactive child. Apparently COMT's "primary function is to help to break down dopamine. Dopamine is a neurotransmitter that is recognized for its role in attention, as well as reward seeking behavior. Dopamine helps to cause pleasurable feelings that aid in reinforcing positive behaviors and motivating individuals to function in certain reward gaining activities. COMT is also involved in the breakdown of another neurotransmitter, norepinephrine. The balance between norepinephrine levels and dopamine levels has been implicated in ADD/ADHD; in addition, dopamine levels are important in conditions such as Parkinson's disease. COMT is also involved in the proper processing of estrogen in the body."
Lastly, my MTHFR and MTRR mutations both lead to high levels of homocysteine, which is responsible for a wide range of inflammatory conditions, including heart disease and Alzheimer's disease.
In conclusion
It's fascinating to me that independent of any infections or diseases I may have acquired in utero or as a small child, my genetics predispose me to Lyme disease, mold intolerance, toxin buildup, inflammatory conditions, and mood imbalances. Since these predispositions significantly increase the likelihood of a person acquiring a specific disease in their lifetime, it takes far more effort for a genetically susceptible person to avoid certain illnesses through their lifestyle choices than it does for a not-susceptible person. But I didn't know that while growing up. In retrospect, I can see how my lifestyle choices — mainly a poor diet heavy with "fake" foods and sugar, unsanitary conditions and a bad habit of touching animals on several continents — have invited babesia, borna virus, mycoplasma fermentae, XMRV, candida and several types of worms to thrive in my body.
Furthermore, while Lyme disease is certainly a serious health matter that should never be ignored, I can now understand (thanks to Shoemaker and Yasko's research) why I've had a hard time recovering from Lyme. I've spent the last year on a valuable protocol that kills the Lyme spirochete, balances my thyroid and adrenal hormones, kills the parasites and viruses which are co-infections of Lyme, heals my gut, and detoxifies my organs to some extent. All of that has been important and will continue to be a part of my treatment.
But now I know my detoxification strategies barely scratched the surface because of an overload of biotoxins, mold, and a broken methylation cycle. Now I need to bring out the big guns. Shoemaker and Yasko both offer excellent and proven ways to bypass genetic mutations related to biotoxins and methylation — in short, they include cholestyramine, RNA drops, methyl-B12, folates, and glutathione. But I won't get into the treatment in too much detail. This blog post is already long enough to be a novel.
Knowing my genetic weaknesses empowers me in another way, too. If I should choose to reproduce, I will definitely ask my partner to have these genetic tests performed, because there is a very real and frightening chance that I could have a child with autism, Down's syndrome, Lyme disease and more — all dependent upon whether my mate shares some of my mutations. I guess it would be wise to pursue this early in any relationships that I see as potentially heading in that direction, since certain mutations would be absolute deal-breakers. I know that's sad. And I also realize that some of you might think that's taking it too far — love and compatibility should be enough, and I should let God do the rest. I understand that mentality, but I don't work that way. I absolutely want to be as smart as I can to lower my risk of having a child with autism or Down's syndrome, as I come from the school of thought that knowledge is power. Now that I have it, I can use the knowledge of my genetic mutations to my advantage.
In any case, adoption appeals to me more every day.
What else can I say? My parents' genes came together to produce some scary abnormalities, but my genetics aren't all burdensome. Thanks to my genes, I'm tall; my bones are denser and stronger than most people's and therefore don't break easily; there's no breast cancer in my family; and I have my mother's ability to write well and my German family's musical talent. That counts for something, too.
I hope this entry has been educational and even helpful to fellow Lymies who've hit a wall.
Thursday, February 16, 2012
Energy Is More Than A RedBull
It's the time of year when things barely begin their tilt in a new direction. Tulip bulbs are poking their extremities through the soil, cherry blossoms are adorning tree branches in all their delicate, miniature, blushing pink glory, and I'm on a new, proactive kick with my health. The new upswing comes thanks to a little something we on Earth call energy. I'd guess it's the most under-appreciated and ignored tool in terms of diagnosis and healing.
First, a quick status update. As I posted in my last entry, I hit a bit of a snag at the start of the year that forced me off my protocol almost entirely. Now that I've gotten my stomach under control — knock on wood — I'm slowly building back up on my supplements. I was somewhat concerned about whether my delicate stomach would ever be able to handle pills again, but every expert with whom I've consulted on the matter has helped alleviate those concerns. If I take their word for it, my stomach lining is healed, the H. pylori is gone, and the new daily herbal capsule I consume (slippery elm bark, licorice root, mastica gum, bentonite clay) will protect my stomach. Okay — onwards. But if my stomach falters yet again, I may transition to rifing or i.v.s.
While I've been transitioning from digestive destruction back to pill protocol, I had the privilege of crossing paths with two reputable figure-heads in the Lyme world, each of whom does his/her own form of energy-based work.
The first was Tami Duncan, a Reiki master and healer who energetically tapped into the weakest parts of my body and produced astounding results. Without my even hinting at nausea during the first of our two sessions — during which the nausea was so severe I actually thought I would start to retch in the middle of it — she knew I had "a strong urge to vomit" and cleared it away energetically. Poof. No pills necessary. She also has, for lack of a better word, genuine psychic abilities. She knew a lot about my emotional stressors and my family history (all the way back four generations) without tricking me into divulging information, nor possibly having been able to research any of this nor having accessed my Facebook page. If you don't believe in energy healers, she'll make you a believer. It was magic. I only wish the results were permanent, and not just a fleeting sense of balance and clarity, but energetic work can only last so long when we live in an environment that constantly bombards us with negative energy (from humans to electronics and everything in between).
The second was a local ART specialist and the brains behind BetterHealthGuy.com (whose name I'd rather not share publicly). Through his energetic tests, he was able to determine that I have everything I've already been diagnosed with (once again, I didn't give him this information) and a few other infections I had never been tested for, too. The energetic presences he detected, of which I already knew, included borrelia (Lyme), babesia, mycoplasma, fungus (candida), heavy metal toxicity, parasites, KPU (kryptopyrroles), thyroid malfunction, liver malfunction, intracellular brain malfunction, and lymphatic blockage. It was good to confirm that those did exist, not that I had any doubt. The new ones detected were borna virus, rickettsia, XMRV, and MARCoNS. Except for a few upcoming tweaks, my protocol is a pretty good one for these particular issues. I certainly felt it was working as 2011 passed, so it's unfortunate I had to cease it for approximately seven weeks to let my stomach heal. (On the bright side, quitting my supplements allowed my bugs to flare enough to be detectable in the ART session — and boy was a lot detected!) But I'm climbing back into the saddle and ready to squish their microscopic bodies to pulps — detox and binders, here I come!
I'm still seeing my doctors, Dr. Randy Baker in Soquel and Dr. Nancy Evans in Foster City. Nothing that Tami or the ART guy did contraindicates anything my Lyme doctors are doing — it only complements it.
A lot of what I've been doing lately involves some form of energy transfer, and I realize hard-nosed purists may find it laughable at best. But when you really analyze energetic work at its core, you'll find it's actually more aligned with science (physics) and thus, well, reality, than you might think. Being that I hardly excel at providing technical explanations for things, I'll resist the urge to try (and fail) at explaining the science behind any of the above concepts. And I realize that may weaken my argument. But I'm not blogging to try to argue or convince anyone of anything — I'm just sharing my experience. I'm one of the biggest skeptics out there whenever I come across anything new or sketchy, and I've seen first-hand the ways energy work is one of the most over-looked and powerful tools around (no pun intended).
While everyone reacts to energy fields to some varying degree, it usually takes the more sensitive types (you know who you are) to feel its effects. There were hints that I might respond strongly to energetic influences far before I experienced any Reiki or ART. The computer lab in college would aggravate neurological symptoms due to all the radiation. Walking barefoot and laying in the grass has always felt good to me due to its grounding capabilities. Holding zeolite up to my liver or thyroid have provided warm tingling sensations inside my body. Cell phone conversations longer than 10 minutes would give me a headache. And people's emotions have always affected my own. So I guess it's no surprise that I would strongly respond to the effects of energy work.
This journey continues to enlighten, educate, and............ energize me.
First, a quick status update. As I posted in my last entry, I hit a bit of a snag at the start of the year that forced me off my protocol almost entirely. Now that I've gotten my stomach under control — knock on wood — I'm slowly building back up on my supplements. I was somewhat concerned about whether my delicate stomach would ever be able to handle pills again, but every expert with whom I've consulted on the matter has helped alleviate those concerns. If I take their word for it, my stomach lining is healed, the H. pylori is gone, and the new daily herbal capsule I consume (slippery elm bark, licorice root, mastica gum, bentonite clay) will protect my stomach. Okay — onwards. But if my stomach falters yet again, I may transition to rifing or i.v.s.
While I've been transitioning from digestive destruction back to pill protocol, I had the privilege of crossing paths with two reputable figure-heads in the Lyme world, each of whom does his/her own form of energy-based work.
The first was Tami Duncan, a Reiki master and healer who energetically tapped into the weakest parts of my body and produced astounding results. Without my even hinting at nausea during the first of our two sessions — during which the nausea was so severe I actually thought I would start to retch in the middle of it — she knew I had "a strong urge to vomit" and cleared it away energetically. Poof. No pills necessary. She also has, for lack of a better word, genuine psychic abilities. She knew a lot about my emotional stressors and my family history (all the way back four generations) without tricking me into divulging information, nor possibly having been able to research any of this nor having accessed my Facebook page. If you don't believe in energy healers, she'll make you a believer. It was magic. I only wish the results were permanent, and not just a fleeting sense of balance and clarity, but energetic work can only last so long when we live in an environment that constantly bombards us with negative energy (from humans to electronics and everything in between).
The second was a local ART specialist and the brains behind BetterHealthGuy.com (whose name I'd rather not share publicly). Through his energetic tests, he was able to determine that I have everything I've already been diagnosed with (once again, I didn't give him this information) and a few other infections I had never been tested for, too. The energetic presences he detected, of which I already knew, included borrelia (Lyme), babesia, mycoplasma, fungus (candida), heavy metal toxicity, parasites, KPU (kryptopyrroles), thyroid malfunction, liver malfunction, intracellular brain malfunction, and lymphatic blockage. It was good to confirm that those did exist, not that I had any doubt. The new ones detected were borna virus, rickettsia, XMRV, and MARCoNS. Except for a few upcoming tweaks, my protocol is a pretty good one for these particular issues. I certainly felt it was working as 2011 passed, so it's unfortunate I had to cease it for approximately seven weeks to let my stomach heal. (On the bright side, quitting my supplements allowed my bugs to flare enough to be detectable in the ART session — and boy was a lot detected!) But I'm climbing back into the saddle and ready to squish their microscopic bodies to pulps — detox and binders, here I come!
I'm still seeing my doctors, Dr. Randy Baker in Soquel and Dr. Nancy Evans in Foster City. Nothing that Tami or the ART guy did contraindicates anything my Lyme doctors are doing — it only complements it.
A lot of what I've been doing lately involves some form of energy transfer, and I realize hard-nosed purists may find it laughable at best. But when you really analyze energetic work at its core, you'll find it's actually more aligned with science (physics) and thus, well, reality, than you might think. Being that I hardly excel at providing technical explanations for things, I'll resist the urge to try (and fail) at explaining the science behind any of the above concepts. And I realize that may weaken my argument. But I'm not blogging to try to argue or convince anyone of anything — I'm just sharing my experience. I'm one of the biggest skeptics out there whenever I come across anything new or sketchy, and I've seen first-hand the ways energy work is one of the most over-looked and powerful tools around (no pun intended).
While everyone reacts to energy fields to some varying degree, it usually takes the more sensitive types (you know who you are) to feel its effects. There were hints that I might respond strongly to energetic influences far before I experienced any Reiki or ART. The computer lab in college would aggravate neurological symptoms due to all the radiation. Walking barefoot and laying in the grass has always felt good to me due to its grounding capabilities. Holding zeolite up to my liver or thyroid have provided warm tingling sensations inside my body. Cell phone conversations longer than 10 minutes would give me a headache. And people's emotions have always affected my own. So I guess it's no surprise that I would strongly respond to the effects of energy work.
This journey continues to enlighten, educate, and............ energize me.
Tuesday, January 31, 2012
Oral Serotonin: A Great Experiment, But Worth It?
This has been the worst month since I started treatment — which was, incidentally, just about one year ago. (Happy Lymeaversary.)
The latest tweaks to my protocol at the beginning of January — which included increasing my Armour thyroid to 1.5 grains and starting oral serotonin pills — unleashed a cascade of unwanted domino effects that I still haven't gotten under control.
First, the increase in thyroid sent my uber-sensitive body into a hyperthyroid state, causing the kind of unnerving anxiety that makes a person want to rip all of their skin off. So I called my doctor and was told to go back to one grain. OK, problem solved. Next.
Ever-sensitive to subtle sensations in my body, I noticed my stomach had developed a constant ache and discomfort. The uncanny, achey feeling led to nausea which suddenly triggered a three-day funfest of on-and-off dry heaving into the toilet. While I must have dry heaved more than a dozen times, I wasn't able to vomit — even when there was surely still food (and at the very least, bile) available to purge.
I found this peculiar; the lack of vomit, in addition to the fact that my bowel movements were not disturbed — led me to believe that I did not have the kind of bacterial or viral infection in my stomach that tends to make people vomit.
After I finally stopped dry heaving (which puts us around the third week of January), I developed this incessant, awful acid reflux and spastic gagginess unlike anything I had ever felt before. Since I've already had three endoscopies of my upper G.I. (one at age 10, one at 16, and one at 20), and two of the three yielded "no results" while the third showed "acid reflux" and the doctors never had any solutions other than doling out prescriptions, I was averse to doing yet another endoscopy. What's the point?
So I did what everyone says not to do: I took to Google. And I started an investigation into what could be causing the perplexing combination of acid reflux, gagginess and chokiness, rib-cage spasming, and dry heaving, without any lower intestinal symptoms. Lo and behold, I came across some information about hiatal hernia, a condition where the top of the stomach actually gets pulled up through the diaphragm into the esophagus. I knew immediately that's what I had.
That's when I enlisted the help of my roommate in performing the hiatal hernia exercises that pull the stomach down. While I felt a significant amount of relief immediately after pulling down my stomach, the symptoms weren't entirely gone, and I was at the end of my rope. So I called my LLMD, Randy Baker, and asked if he'd squeeze me in for an emergency visit.
Dr. Baker confirmed that I'd indeed had a hiatal hernia, which can happen when a person retches and as a result their stomach gets thrust upwards. So, if the hernia was caused by the heaving, then what caused the heaving? I was eager to get to the bottom of this!
Through his muscle and energy tests, Dr. Baker informed me that he was getting a strong reading of H. pylori (the bacterial precursor to ulcers) in my stomach. Well, what triggered the flare-up of H. pylori? According to him, the serotonin pills indicated they were the root culprit.
So, let's get this straight: The serotonin caused my omnipresent traces of H. pylori (which runs in my family) to multiply, which caused me to start retching, which slid my stomach through my diaphragm, which opened the door to acid reflux?
And all of this because I was trying to get more serotonin to my brain so that I can be happier.
Per Dr. Baker's instructions, I'm taking licorice root, slippery elm bark, mastica gum, Zofran, and 1/2 a tablet of Prilosec as needed to get me through this temporary blip. Even on these medications, I'm still dry heaving sporadically and as recently as last night. Apparently the above supplements have healing properties that should fix all of this, but my patience wears thin when it comes to nausea (my most-abhored sensation). Can't stand the feeling.
Furthermore, I've slipped completely off the wagon in regards to all my vitamins, minerals, herbs, anti-parasitics — my full protocol. It's been almost a month since I was able to take any of that stuff, due to the fragile state of my stomach. I feel as though I'm backpedaling with every day that I lose. Lyme, babesia, mycoplasma, parasites — they're having a heyday while I try to get my stubborn stomach under control.
And I can't help but wonder: Even when my stomach is healed, will I be able to go back on my full load of pills? On a daily basis my treatment calls for more than 25 orals, tearing away at my stomach lining. I just don't know if I have the stomach for this treatment. Rife machines, i.v.s, injections, suppositories and oxygen therapy — anything that bypasses the stomach — are looking more attractive to me every day.
Although I haven't flat-out discovered any research that directly connects oral serotonin to H. pylori replication, I've seen some information that suggests that, when orally ingested, serotonin can disrupt the gut's various processes. One rather significant connection I made was the serotonin/dopamine-and-nausea connection. As it turns out, serotonin and dopamine are directly proportional to the feeling we call nausea. Anti-nausea pills such as Zofran are serotonin antagonists, meaning they fight nausea by reducing serotonin.
Ultimately, I'm not sure that increasing serotonin in the gut is the solution for a neurotransmitter deficiency, especially in a person sensitive to nausea. Maybe, just maybe, had I continued the serotonin pills, I would have eventually felt happier albeit chronically nauseous. Scratch that.... I could never be happy if I were always nauseous!
Since I've always had a sensitive stomach — in addition to constant H. pylori — I think my reaction to the serotonin was a semi-rare one and I can't say another person would have experienced the full cascade of symptoms that I did. In hindsight, part of me wishes I hadn't messed with this very powerful substance, but another part of me doesn't regret anything I've tried. If I wasn't the brave experimenter that I am, I would never discover what have been beneficial supplements, either.
I would suggest that anybody with a history of H. pylori (or ulcers), acid reflux, hiatal hernias, or chronic nausea be very cautious when deciding to take oral serotonin. For the rest of you, it might be worth a shot if, like with me, other attempts at increasing your serotonin levels (such as 5-HTP and L-tryptophan) have all failed.
The latest tweaks to my protocol at the beginning of January — which included increasing my Armour thyroid to 1.5 grains and starting oral serotonin pills — unleashed a cascade of unwanted domino effects that I still haven't gotten under control.
First, the increase in thyroid sent my uber-sensitive body into a hyperthyroid state, causing the kind of unnerving anxiety that makes a person want to rip all of their skin off. So I called my doctor and was told to go back to one grain. OK, problem solved. Next.
Ever-sensitive to subtle sensations in my body, I noticed my stomach had developed a constant ache and discomfort. The uncanny, achey feeling led to nausea which suddenly triggered a three-day funfest of on-and-off dry heaving into the toilet. While I must have dry heaved more than a dozen times, I wasn't able to vomit — even when there was surely still food (and at the very least, bile) available to purge.
I found this peculiar; the lack of vomit, in addition to the fact that my bowel movements were not disturbed — led me to believe that I did not have the kind of bacterial or viral infection in my stomach that tends to make people vomit.
After I finally stopped dry heaving (which puts us around the third week of January), I developed this incessant, awful acid reflux and spastic gagginess unlike anything I had ever felt before. Since I've already had three endoscopies of my upper G.I. (one at age 10, one at 16, and one at 20), and two of the three yielded "no results" while the third showed "acid reflux" and the doctors never had any solutions other than doling out prescriptions, I was averse to doing yet another endoscopy. What's the point?
So I did what everyone says not to do: I took to Google. And I started an investigation into what could be causing the perplexing combination of acid reflux, gagginess and chokiness, rib-cage spasming, and dry heaving, without any lower intestinal symptoms. Lo and behold, I came across some information about hiatal hernia, a condition where the top of the stomach actually gets pulled up through the diaphragm into the esophagus. I knew immediately that's what I had.
That's when I enlisted the help of my roommate in performing the hiatal hernia exercises that pull the stomach down. While I felt a significant amount of relief immediately after pulling down my stomach, the symptoms weren't entirely gone, and I was at the end of my rope. So I called my LLMD, Randy Baker, and asked if he'd squeeze me in for an emergency visit.
Dr. Baker confirmed that I'd indeed had a hiatal hernia, which can happen when a person retches and as a result their stomach gets thrust upwards. So, if the hernia was caused by the heaving, then what caused the heaving? I was eager to get to the bottom of this!
Through his muscle and energy tests, Dr. Baker informed me that he was getting a strong reading of H. pylori (the bacterial precursor to ulcers) in my stomach. Well, what triggered the flare-up of H. pylori? According to him, the serotonin pills indicated they were the root culprit.
So, let's get this straight: The serotonin caused my omnipresent traces of H. pylori (which runs in my family) to multiply, which caused me to start retching, which slid my stomach through my diaphragm, which opened the door to acid reflux?
And all of this because I was trying to get more serotonin to my brain so that I can be happier.
Per Dr. Baker's instructions, I'm taking licorice root, slippery elm bark, mastica gum, Zofran, and 1/2 a tablet of Prilosec as needed to get me through this temporary blip. Even on these medications, I'm still dry heaving sporadically and as recently as last night. Apparently the above supplements have healing properties that should fix all of this, but my patience wears thin when it comes to nausea (my most-abhored sensation). Can't stand the feeling.
Furthermore, I've slipped completely off the wagon in regards to all my vitamins, minerals, herbs, anti-parasitics — my full protocol. It's been almost a month since I was able to take any of that stuff, due to the fragile state of my stomach. I feel as though I'm backpedaling with every day that I lose. Lyme, babesia, mycoplasma, parasites — they're having a heyday while I try to get my stubborn stomach under control.
And I can't help but wonder: Even when my stomach is healed, will I be able to go back on my full load of pills? On a daily basis my treatment calls for more than 25 orals, tearing away at my stomach lining. I just don't know if I have the stomach for this treatment. Rife machines, i.v.s, injections, suppositories and oxygen therapy — anything that bypasses the stomach — are looking more attractive to me every day.
Although I haven't flat-out discovered any research that directly connects oral serotonin to H. pylori replication, I've seen some information that suggests that, when orally ingested, serotonin can disrupt the gut's various processes. One rather significant connection I made was the serotonin/dopamine-and-nausea connection. As it turns out, serotonin and dopamine are directly proportional to the feeling we call nausea. Anti-nausea pills such as Zofran are serotonin antagonists, meaning they fight nausea by reducing serotonin.
Ultimately, I'm not sure that increasing serotonin in the gut is the solution for a neurotransmitter deficiency, especially in a person sensitive to nausea. Maybe, just maybe, had I continued the serotonin pills, I would have eventually felt happier albeit chronically nauseous. Scratch that.... I could never be happy if I were always nauseous!
Since I've always had a sensitive stomach — in addition to constant H. pylori — I think my reaction to the serotonin was a semi-rare one and I can't say another person would have experienced the full cascade of symptoms that I did. In hindsight, part of me wishes I hadn't messed with this very powerful substance, but another part of me doesn't regret anything I've tried. If I wasn't the brave experimenter that I am, I would never discover what have been beneficial supplements, either.
I would suggest that anybody with a history of H. pylori (or ulcers), acid reflux, hiatal hernias, or chronic nausea be very cautious when deciding to take oral serotonin. For the rest of you, it might be worth a shot if, like with me, other attempts at increasing your serotonin levels (such as 5-HTP and L-tryptophan) have all failed.
Tuesday, January 3, 2012
Test Results Are In & My New Lyme Dr.
I'm a bit delayed in writing about my lab results due to catching a cold and feeling generally crappier than usual, but I have good news and bad news. The bad news is that my thyroid medicine hasn't been working, as my T3 and TSH are still almost identical to what they were a year ago and six months ago. Good news: increasing my thyroid medication may do the trick, and if not, in three months we'll try a different thyroid medicine. Also, I love my new Lyme doctor—more on her in a minute.
Bad news: My serotonin levels are still insanely low. The minimum end of the "normal" serotonin range is 26 units, up to a higher "normal" of 150 units or more. While a reading of 26 units would be considered the minimum "safe" amount, a reading of under 10 units results in unreadable amounts of blood serotonin detected—and that's where mine lie. One year ago, they came back unreadable, and in spite of taking homeopathic neurotransmitter support, 5-htp, tryptophan, Neuro-Antitox and other brain-nourishing supplements, I was bewildered to find my serotonin levels are still under 10 units. (This further supports that I have neuro-Lyme).
Good news: My doctor had pure serotonin capsules in the office's compounding pharmacy, so I came home with a bottle to try. The theory that serotonin can cross from the blood into the brain is controversial, with most experts claiming it doesn't work that way, and a minority crying foul with patients swearing by the serotonin pills. I guess it doesn't hurt to try something, if there's a chance it could work. It would certainly benefit me in many ways to get my serotonin levels up.
Generally speaking, my previously dramatically-low levels of iron, magnesium, Vitamin D, and other essential nutrients are slightly elevated. No longer out of range, they are now "low normal" with room for improvement. I'll keep doing what I've been doing—supplements, supplements, supplements (and eating well, of course).
Curiously, there's no test to detect progress in eradicating the damn Lyme spirochete. Likewise, there's no test to evaluate progress in killing parasites. For the latter, stool tests are notoriously unreliable. Evaluating progress in Lyme and parasitic eradication is strictly clinical, depending on symptomatic improvement. I'm nowhere near ready to cash in my chips on either of those, with a long journey still ahead of me.
As a matter of fact, killing Lyme is not currently my priority. As peculiar as it may sound—considering I use the term "Lyme" to sum up the entirety of my chronic illness—Lyme is neither my current battle cry nor the only source of illness. Lyme, the borrelia spirochete, may be responsible for many opportunistic and co-infections such as babesia, candida and heavy metal toxicity, and may amplify the destruction done by parasites and molds, but each of these conditions needs to be targeted specifically with its own treatment.
Most Lyme experts assert that hormones need to be balanced (including the thyroid) and parasitic infections, among other things, must be addressed before the Lyme itself. And nobody really knows if late-stage Lyme can ever be completely killed off, since the spirochete cleverly hides inside cell membranes and tissue.
Through a year of research, it has become my belief that a person with chronic Lyme can dramatically improve his/her health by addressing their hormonal imbalances, killing parasites, chelating metals, avoiding mold exposure, performing adequate detoxification, lowering their bacterial burden with a low dose of anti-microbials, and getting all their nutrients through diet and/or supplementation—even if they do not kill Lyme.
So, that is what I am doing. For now.
And my new LLND (not LLMD—because she is a naturopathic doctor) is totally on board with me. Her name is Dr. Nancy Evans and she works out of the Holtorf Medical Group's Foster City location. She specializes in endocrinology and Lyme disease. Not all endocrinologists are created equal. Far from it. She balances western medicine, including pharmaceuticals, with naturopathy, gives you a full hour of time, listens intently, and runs the proper tests to see if a chronic infection could be throwing off your thyroid. She's not cheap, and the office doesn't handle insurance, but you can always file an out-of-network claim with your insurance company for reimbursement. Good health doesn't come cheap or easy. She's worth the out-of-pocket expense. I highly recommend anybody in the Bay Area with thyroid problems and/or chronic fatigue—Lyme disease or not—make an appointment with Dr. Evans.
Bad news: My serotonin levels are still insanely low. The minimum end of the "normal" serotonin range is 26 units, up to a higher "normal" of 150 units or more. While a reading of 26 units would be considered the minimum "safe" amount, a reading of under 10 units results in unreadable amounts of blood serotonin detected—and that's where mine lie. One year ago, they came back unreadable, and in spite of taking homeopathic neurotransmitter support, 5-htp, tryptophan, Neuro-Antitox and other brain-nourishing supplements, I was bewildered to find my serotonin levels are still under 10 units. (This further supports that I have neuro-Lyme).
Good news: My doctor had pure serotonin capsules in the office's compounding pharmacy, so I came home with a bottle to try. The theory that serotonin can cross from the blood into the brain is controversial, with most experts claiming it doesn't work that way, and a minority crying foul with patients swearing by the serotonin pills. I guess it doesn't hurt to try something, if there's a chance it could work. It would certainly benefit me in many ways to get my serotonin levels up.
Generally speaking, my previously dramatically-low levels of iron, magnesium, Vitamin D, and other essential nutrients are slightly elevated. No longer out of range, they are now "low normal" with room for improvement. I'll keep doing what I've been doing—supplements, supplements, supplements (and eating well, of course).
Curiously, there's no test to detect progress in eradicating the damn Lyme spirochete. Likewise, there's no test to evaluate progress in killing parasites. For the latter, stool tests are notoriously unreliable. Evaluating progress in Lyme and parasitic eradication is strictly clinical, depending on symptomatic improvement. I'm nowhere near ready to cash in my chips on either of those, with a long journey still ahead of me.
As a matter of fact, killing Lyme is not currently my priority. As peculiar as it may sound—considering I use the term "Lyme" to sum up the entirety of my chronic illness—Lyme is neither my current battle cry nor the only source of illness. Lyme, the borrelia spirochete, may be responsible for many opportunistic and co-infections such as babesia, candida and heavy metal toxicity, and may amplify the destruction done by parasites and molds, but each of these conditions needs to be targeted specifically with its own treatment.
Most Lyme experts assert that hormones need to be balanced (including the thyroid) and parasitic infections, among other things, must be addressed before the Lyme itself. And nobody really knows if late-stage Lyme can ever be completely killed off, since the spirochete cleverly hides inside cell membranes and tissue.
Through a year of research, it has become my belief that a person with chronic Lyme can dramatically improve his/her health by addressing their hormonal imbalances, killing parasites, chelating metals, avoiding mold exposure, performing adequate detoxification, lowering their bacterial burden with a low dose of anti-microbials, and getting all their nutrients through diet and/or supplementation—even if they do not kill Lyme.
So, that is what I am doing. For now.
And my new LLND (not LLMD—because she is a naturopathic doctor) is totally on board with me. Her name is Dr. Nancy Evans and she works out of the Holtorf Medical Group's Foster City location. She specializes in endocrinology and Lyme disease. Not all endocrinologists are created equal. Far from it. She balances western medicine, including pharmaceuticals, with naturopathy, gives you a full hour of time, listens intently, and runs the proper tests to see if a chronic infection could be throwing off your thyroid. She's not cheap, and the office doesn't handle insurance, but you can always file an out-of-network claim with your insurance company for reimbursement. Good health doesn't come cheap or easy. She's worth the out-of-pocket expense. I highly recommend anybody in the Bay Area with thyroid problems and/or chronic fatigue—Lyme disease or not—make an appointment with Dr. Evans.
Wednesday, December 21, 2011
So, How Am I Feeling Now? An Update
Here we are, approaching the "one-year in treatment" mark, and I think an update is overdue—especially since my recent posts have focused more on Lyme issues at large than on my symptoms and recovery process.
Firstly, you may recall that I've been seeing two Lyme-literate MDs, alternating checkups between the two and incorporating both of their protocols. Well, one of them recently left the practice to move back to his hometown, so I'll be seeing his replacement in about one week. I've heard that she's both holistic and naturopathic, in addition to being an MD who knows Lyme, so I'm cautiously optimistic about her.
At my appointment with her next week, I'll get the blood test results for my one-year follow-up. This test is the big daddy, the one where they run blood tests for everything from your head to your toe and compare it to the last (which was at the six-month point). So, I'll update my blog again next week with those results.
I do anticipate that my levels of thyroid, magnesium, iron, white blood cells, vitamin D, serotonin and other bodily necessities that were far below the normal range might have reached a more normal range, since I've been on supplements for all of them for nearly a year. But like I said, I'll have those results next week....eeeeeee! Can't wait.
Generally speaking, in terms of an overall update, I can't say I'm actually feeling healthier yet. There have been a few false alarms, times when I feel completely "normal" for a few days, but they never last. It's still ups and downs, with more time comprising severe fatigue than "normalcy". This, I've been told by many a source, is normal considering my experience. I was born with Lyme and I've been very sick for thirty years. There is no fast cure. There is only persistence and patience, and the body may take several years to both kill off the offenders and heal itself.
So in that sense, I can't say I feel better yet. But here's the key—feeling better isn't always synonymous with being healthier. The body may be producing more of a much-needed hormone, or regulating/detoxing itself better, while still a person feels ill. Here's why:
Simply put, the "correction" process is hard on the body. Resetting channels and signals and pathways in the body varies from exhausting to excruciating. The body is so used to its malfunctions that it suffers from its transitions. So, achieving health can actually make you feel worse, which I believe is what's been going on with me (especially since I'm resetting signals specifically in my brain). But it's all necessary, because the day will come, months or years down the road, when the body is done resetting and correcting itself and the person actually feels healthy.
I know a lot of people are hoping to hear that I'm close to recovered by now. I almost feel like I'm sort of disappointing them to say I'm not. But, I'm not disappointed. My journey hasn't been void of transition and growth.
For instance, even without seeing the lab results yet, I know my body is healing in at least one way: I tolerate the B12 & glutatione injections much better now. While earlier this year the injections would render me so weak, foggy and debilitated, similar to being anesthetized, and had to nap immediately upon receiving one, they now energize me! I've been told that this was because the shots mobilized so many built-up toxins (including metals) that my methylation (detox) pathways would become bombarded with toxins. But with all this repairing of my blood and methylation pathways over time, my body now reacts the way it's supposed to react to the B12 and glutathione.
Granted, the now-pleasant effects are temporary, and I only get the shot once or twice a month because it's ridiculously expensive, but I fully enjoy the feeling of happiness, calmness, clear-headedness and strength that they give me. To feel simultaneously calm and energetic has always seemed an oxymoron to me, until now. The injections are like an off switch for anxiety—that blend of nervous energy and fatigue—and an on switch for a peaceful, energetic strength.
I'm also finding myself generally better able to predict when a herxy day is coming. The pattern is usually as follows: immediately upon pulsing my ivermectin (my main medication at the moment), and for up to twelve hours after taking it, I feel almost euphoric. Then, it seems, about twenty-four to thirty-six hours after taking ivermectin, I begin the downward decline that is my body killing microbes and parasites, which can last up to two days.
During this herxy period, I feel the bugs biting my skin from the inside as they struggle to die. Sometimes they so desperately seek refuge from the medication that they bite me so hard it feels like I'm being attacked by a swarm of red ants or mosquitoes. Also during this herxy period, as unrealistic as this sounds, I can see the microscopic borrelia swirling around inside my eyelids when I shut my eyes. Here are some pictures of the parasites and Lyme living inside me. (continued below photos)...
Mycoplasma
Lyme (borrelia)
Babesia
Roundworm (egg)
Lungworm
As I start to herx (the bugs die), I feel incredibly toxic—weak, headachey, sore all over, tired, irritable—and have to do as much detoxing as possible to literally rid my body of dead bugs. (Sounds appetizing!) My main detox tools are at-home sauna therapy, epsom salt and baking soda baths, lots of oral binders including chlorella and charcoal, massage therapy and coffee enemas.
Experience has taught me that if I neglect to detox properly during the post-ivermectin herx, I end up bedridden and unable to perform simple tasks like talking on the phone or getting the mail. My body and brain both shut down. This also happens after I take too much cats claw or other anti-microbials. And this is one reason I still can't return to my career.
When I make plans, it's important to take this schedule into account. The worst time to make plans is approximately thirty-six hours after pulsing an anti-microbial or anti-parasitic. I'm still making mistakes and learning from them, like how I keep making plans in San Francisco in spite of better judgment. Driving from Palo Alto (where I live) to San Francisco and back can take up to two hours, not including time spent in the city. It always ends in a complete bodily shut-down, so I'm learning to just say no and stay local.
On another note, I've got a roommate now! She's another Lymie, around my age, who was living in Los Angeles and traveling north to see her Bay Area LLMD every couple of months. After a series of events in her life rendered her without a place to live, she moved into the guest room in my house. I have to say, after living alone for ten years, it's surprisingly not so difficult to have a roommate again, probably because we understand each other so well. But.....
Shortly after she moved in earlier this month, two discs in her back slipped out of place (not uncommon for Lymies, since Lyme degenerates the spine) and we ended up checking her into the ER at Stanford Hospital. She's been hospitalized in severe pain for a four days with a pinched sciatic nerve and a numb left leg, and in spite of two MRIs of her upper and lower back, multiple doctors are still baffled and unsure of how to proceed. Hopefully she'll be home (i.e. my home!) for Christmas, but we don't know yet.
Well, that's pretty much all the updating I've got. New blood tests on the way. New doctor. New roommate. Better understanding of the workings of my body. Making progress.
Merry Christmas and Happy Hanukkah and merry solstice and joyful love to everybody!
Firstly, you may recall that I've been seeing two Lyme-literate MDs, alternating checkups between the two and incorporating both of their protocols. Well, one of them recently left the practice to move back to his hometown, so I'll be seeing his replacement in about one week. I've heard that she's both holistic and naturopathic, in addition to being an MD who knows Lyme, so I'm cautiously optimistic about her.
At my appointment with her next week, I'll get the blood test results for my one-year follow-up. This test is the big daddy, the one where they run blood tests for everything from your head to your toe and compare it to the last (which was at the six-month point). So, I'll update my blog again next week with those results.
I do anticipate that my levels of thyroid, magnesium, iron, white blood cells, vitamin D, serotonin and other bodily necessities that were far below the normal range might have reached a more normal range, since I've been on supplements for all of them for nearly a year. But like I said, I'll have those results next week....eeeeeee! Can't wait.
Generally speaking, in terms of an overall update, I can't say I'm actually feeling healthier yet. There have been a few false alarms, times when I feel completely "normal" for a few days, but they never last. It's still ups and downs, with more time comprising severe fatigue than "normalcy". This, I've been told by many a source, is normal considering my experience. I was born with Lyme and I've been very sick for thirty years. There is no fast cure. There is only persistence and patience, and the body may take several years to both kill off the offenders and heal itself.
So in that sense, I can't say I feel better yet. But here's the key—feeling better isn't always synonymous with being healthier. The body may be producing more of a much-needed hormone, or regulating/detoxing itself better, while still a person feels ill. Here's why:
Simply put, the "correction" process is hard on the body. Resetting channels and signals and pathways in the body varies from exhausting to excruciating. The body is so used to its malfunctions that it suffers from its transitions. So, achieving health can actually make you feel worse, which I believe is what's been going on with me (especially since I'm resetting signals specifically in my brain). But it's all necessary, because the day will come, months or years down the road, when the body is done resetting and correcting itself and the person actually feels healthy.
I know a lot of people are hoping to hear that I'm close to recovered by now. I almost feel like I'm sort of disappointing them to say I'm not. But, I'm not disappointed. My journey hasn't been void of transition and growth.
For instance, even without seeing the lab results yet, I know my body is healing in at least one way: I tolerate the B12 & glutatione injections much better now. While earlier this year the injections would render me so weak, foggy and debilitated, similar to being anesthetized, and had to nap immediately upon receiving one, they now energize me! I've been told that this was because the shots mobilized so many built-up toxins (including metals) that my methylation (detox) pathways would become bombarded with toxins. But with all this repairing of my blood and methylation pathways over time, my body now reacts the way it's supposed to react to the B12 and glutathione.
Granted, the now-pleasant effects are temporary, and I only get the shot once or twice a month because it's ridiculously expensive, but I fully enjoy the feeling of happiness, calmness, clear-headedness and strength that they give me. To feel simultaneously calm and energetic has always seemed an oxymoron to me, until now. The injections are like an off switch for anxiety—that blend of nervous energy and fatigue—and an on switch for a peaceful, energetic strength.
I'm also finding myself generally better able to predict when a herxy day is coming. The pattern is usually as follows: immediately upon pulsing my ivermectin (my main medication at the moment), and for up to twelve hours after taking it, I feel almost euphoric. Then, it seems, about twenty-four to thirty-six hours after taking ivermectin, I begin the downward decline that is my body killing microbes and parasites, which can last up to two days.
During this herxy period, I feel the bugs biting my skin from the inside as they struggle to die. Sometimes they so desperately seek refuge from the medication that they bite me so hard it feels like I'm being attacked by a swarm of red ants or mosquitoes. Also during this herxy period, as unrealistic as this sounds, I can see the microscopic borrelia swirling around inside my eyelids when I shut my eyes. Here are some pictures of the parasites and Lyme living inside me. (continued below photos)...
Mycoplasma
Lyme (borrelia)
Babesia
Roundworm (egg)
LungwormAs I start to herx (the bugs die), I feel incredibly toxic—weak, headachey, sore all over, tired, irritable—and have to do as much detoxing as possible to literally rid my body of dead bugs. (Sounds appetizing!) My main detox tools are at-home sauna therapy, epsom salt and baking soda baths, lots of oral binders including chlorella and charcoal, massage therapy and coffee enemas.
Experience has taught me that if I neglect to detox properly during the post-ivermectin herx, I end up bedridden and unable to perform simple tasks like talking on the phone or getting the mail. My body and brain both shut down. This also happens after I take too much cats claw or other anti-microbials. And this is one reason I still can't return to my career.
When I make plans, it's important to take this schedule into account. The worst time to make plans is approximately thirty-six hours after pulsing an anti-microbial or anti-parasitic. I'm still making mistakes and learning from them, like how I keep making plans in San Francisco in spite of better judgment. Driving from Palo Alto (where I live) to San Francisco and back can take up to two hours, not including time spent in the city. It always ends in a complete bodily shut-down, so I'm learning to just say no and stay local.
On another note, I've got a roommate now! She's another Lymie, around my age, who was living in Los Angeles and traveling north to see her Bay Area LLMD every couple of months. After a series of events in her life rendered her without a place to live, she moved into the guest room in my house. I have to say, after living alone for ten years, it's surprisingly not so difficult to have a roommate again, probably because we understand each other so well. But.....
Shortly after she moved in earlier this month, two discs in her back slipped out of place (not uncommon for Lymies, since Lyme degenerates the spine) and we ended up checking her into the ER at Stanford Hospital. She's been hospitalized in severe pain for a four days with a pinched sciatic nerve and a numb left leg, and in spite of two MRIs of her upper and lower back, multiple doctors are still baffled and unsure of how to proceed. Hopefully she'll be home (i.e. my home!) for Christmas, but we don't know yet.
Well, that's pretty much all the updating I've got. New blood tests on the way. New doctor. New roommate. Better understanding of the workings of my body. Making progress.
Merry Christmas and Happy Hanukkah and merry solstice and joyful love to everybody!
Saturday, November 26, 2011
The Epidemic of Misdiagnosis
Lymies fight many battles. We fight the ignorant doctors who deny our disease, the insurance companies who refuse to cover our medical costs, and friends and family who don't want to hear our cries. This is not a new theme on my blog. As I've explored in the past, we fight our battles hard.
The process from start (accepting the possibility of Lyme and seeking proper diagnosis) to finish (the ever-elusive rainbow of a "cure" we chase) is tedious.
Finding a doctor to provide a proper diagnosis is a common early obstacle. After all, Lyme-literate doctors (known as LLMDs) are far fewer in numbers than regular doctors who claim to know how to properly test for Lyme, and actually don't.
If I could provide one critical piece of advice to any reader who suspects chronic (non-acute) Lyme, it would be this: Don't let a general doctor run your Lyme test. Heck, don't let your internist, immunologist, infectious disease doctor, OBGYN, allergist, endocrinologist, neurologist or anyone except for an LLMD run your Lyme test.
As if it isn't bad enough that many outright refuse to test you based on [their ignorance of] your symptoms or [the lack of ticks in] your geographic area, if you're lucky enough to find a doctor to humor you enough to agree to test you, they will probably either run the antiquated, highly inaccurate ELISA blood test, or misread the results of the multi-layered, complex western blot test to be negative when it's actually positive.
Bottomline: Most doctors don't know how to properly diagnose someone with Lyme. They arrogantly claim they know what they're doing, but they don't.
What's the point in taking a test if there's nobody to properly interpret the results? Would you take a lie-detector test that's being interpreted by an unprofessional, untrained lie detector administrator? (OK, don't trust lie detector tests anyway, but that's completely off topic......)
I've heard from many people over the last year that they've received false negative results from Lyme-illiterate doctors contradicting their Lyme diagnosis, but it wasn't until very recently that a deeply personal assault forced me to look straight into the barrel of the gun of this controversy.
Someone very special to me recently jumped on the Lyme bandwagon after experiencing a typical "Lyme flare", comprising symptoms of anxiety attacks, insomnia, mental fog, weak muscles, stomach pain, cardiac arrhythmia, spinal pain so severe it became difficult to walk, lack of appetite, memory loss, and more. This person, who I'll call Sam, received three types of Lyme testing over the last couple of months: kinesiology, otherwise known as muscle testing. the ELISA blood test, and the western blot blood test.
Two of those tests came back positive. The ELISA, not surprisingly, was the negative one. The muscle test returned the strongest of three levels of Lyme diagnosis, assuring that, in spite of the "alternative" nature of this test, there was no doubt in the strong, flaring state of Lyme—following to the test's methodology.
Each of the three tests was performed by a different doctor. Unfortunately, Sam did not heed my advice to trust only an LLMD, so the two blood tests were performed by non-LLMDs (making the most alternative test of all, the muscle test, the only one performed by an LLMD).
The two non-literate MDs who performed the blood tests, an internist and a neurologist, claimed the tests were negative. Yet, knowing how hard it is to actually interpret a western blot test, I had to see the test result for myself. Lo and behold, the western blot showed five positive bands, making it a positive diagnosis. Sadly, the neurologist who diagnosed Sam was not well-versed on interpreting the results.
Why would she be? Doctors aren't trained to be Lyme literate in medical school. (And thanks to these doctors, as we speak, thousands—tens of thousands, even—who mistakenly believe they don't have chronic Lyme, actually do).
This is where the staring-straight-into-the-barrel-of-a-gun part of the story kicks in. I knew that Sam, whose relationship and well-being I value immensely, was positive for Lyme. If a clinical/symptomatic diagnosis wasn't enough, two tests for Lyme were positive! For my sake and for Sam's, it became a personal mission to get the truth acknowledged as such.
But it was my word against the neurologist's. Further complicating the issue were mutual friends of mine and Sam's, a married couple who I'll call Bob and Janet. It was Janet—a longtime friend—who referred Sam to see her neurologist (the one who initially misinterpreted the results of the western blot).
Unfortunately, Janet worships her neurologist, crediting her for curing Janet of her own poor health. So neither Janet, her husband Bob, or Sam will acknowledge Sam's positive Lyme diagnosis. It's lonely here in my corner.
This comes even after Janet watched the Lyme documentary Under Our Skin. While I had hoped the movie might change Janet's perception of chronic Lyme, I was disillusioned at her only insight into the film being that it "scared" her, and further disappointed that her husband Bob refused to watch it after he witnessed his wife's unpleasant reaction to it.
Maybe, in a sense, the movie is scary, since it exposes the devastation that chronic Lyme can actually cause a person. While it's Bob's choice to watch or not watch the movie, for him to deny himself that education and still insist—with the stench of cavalier abrasiveness—"Sam does NOT have Lyme. He just doesn't. Drop it," was hypocritical to say the least.
That's a quote from the last time I saw all three of them together. We ended up in the rather unpleasant argument over the existence of Sam's Lyme disease at the dinner table. Frustrated and embarrassed to find myself fuming, I wiped away tears while firmly maintaining my stance. As Janet tried to console my unconsolable self with her loving, gentle tactics, it struck me that my grief and anger was not solely the result of this disagreement.
Yes, I grieved over knowing that for the rest of our lives, they would never believe me over the neurologist. And indeed my ego was bruised at their perception of me as the emotionally unstable, misinformed one, which might carry on indefinitely through future rites of passage—all of which I expect them to be a part of. But, on another level, I mourned for the thousands of us who have stood in my shoes and been told we're wrong or stupid, and our gut-wrenching feeling of powerlessness.
The process from start (accepting the possibility of Lyme and seeking proper diagnosis) to finish (the ever-elusive rainbow of a "cure" we chase) is tedious.
Finding a doctor to provide a proper diagnosis is a common early obstacle. After all, Lyme-literate doctors (known as LLMDs) are far fewer in numbers than regular doctors who claim to know how to properly test for Lyme, and actually don't.
If I could provide one critical piece of advice to any reader who suspects chronic (non-acute) Lyme, it would be this: Don't let a general doctor run your Lyme test. Heck, don't let your internist, immunologist, infectious disease doctor, OBGYN, allergist, endocrinologist, neurologist or anyone except for an LLMD run your Lyme test.
As if it isn't bad enough that many outright refuse to test you based on [their ignorance of] your symptoms or [the lack of ticks in] your geographic area, if you're lucky enough to find a doctor to humor you enough to agree to test you, they will probably either run the antiquated, highly inaccurate ELISA blood test, or misread the results of the multi-layered, complex western blot test to be negative when it's actually positive.
Bottomline: Most doctors don't know how to properly diagnose someone with Lyme. They arrogantly claim they know what they're doing, but they don't.
What's the point in taking a test if there's nobody to properly interpret the results? Would you take a lie-detector test that's being interpreted by an unprofessional, untrained lie detector administrator? (OK, don't trust lie detector tests anyway, but that's completely off topic......)
I've heard from many people over the last year that they've received false negative results from Lyme-illiterate doctors contradicting their Lyme diagnosis, but it wasn't until very recently that a deeply personal assault forced me to look straight into the barrel of the gun of this controversy.
Someone very special to me recently jumped on the Lyme bandwagon after experiencing a typical "Lyme flare", comprising symptoms of anxiety attacks, insomnia, mental fog, weak muscles, stomach pain, cardiac arrhythmia, spinal pain so severe it became difficult to walk, lack of appetite, memory loss, and more. This person, who I'll call Sam, received three types of Lyme testing over the last couple of months: kinesiology, otherwise known as muscle testing. the ELISA blood test, and the western blot blood test.
Two of those tests came back positive. The ELISA, not surprisingly, was the negative one. The muscle test returned the strongest of three levels of Lyme diagnosis, assuring that, in spite of the "alternative" nature of this test, there was no doubt in the strong, flaring state of Lyme—following to the test's methodology.
Each of the three tests was performed by a different doctor. Unfortunately, Sam did not heed my advice to trust only an LLMD, so the two blood tests were performed by non-LLMDs (making the most alternative test of all, the muscle test, the only one performed by an LLMD).
The two non-literate MDs who performed the blood tests, an internist and a neurologist, claimed the tests were negative. Yet, knowing how hard it is to actually interpret a western blot test, I had to see the test result for myself. Lo and behold, the western blot showed five positive bands, making it a positive diagnosis. Sadly, the neurologist who diagnosed Sam was not well-versed on interpreting the results.
Why would she be? Doctors aren't trained to be Lyme literate in medical school. (And thanks to these doctors, as we speak, thousands—tens of thousands, even—who mistakenly believe they don't have chronic Lyme, actually do).
This is where the staring-straight-into-the-barrel-of-a-gun part of the story kicks in. I knew that Sam, whose relationship and well-being I value immensely, was positive for Lyme. If a clinical/symptomatic diagnosis wasn't enough, two tests for Lyme were positive! For my sake and for Sam's, it became a personal mission to get the truth acknowledged as such.
But it was my word against the neurologist's. Further complicating the issue were mutual friends of mine and Sam's, a married couple who I'll call Bob and Janet. It was Janet—a longtime friend—who referred Sam to see her neurologist (the one who initially misinterpreted the results of the western blot).
Unfortunately, Janet worships her neurologist, crediting her for curing Janet of her own poor health. So neither Janet, her husband Bob, or Sam will acknowledge Sam's positive Lyme diagnosis. It's lonely here in my corner.
This comes even after Janet watched the Lyme documentary Under Our Skin. While I had hoped the movie might change Janet's perception of chronic Lyme, I was disillusioned at her only insight into the film being that it "scared" her, and further disappointed that her husband Bob refused to watch it after he witnessed his wife's unpleasant reaction to it.
Maybe, in a sense, the movie is scary, since it exposes the devastation that chronic Lyme can actually cause a person. While it's Bob's choice to watch or not watch the movie, for him to deny himself that education and still insist—with the stench of cavalier abrasiveness—"Sam does NOT have Lyme. He just doesn't. Drop it," was hypocritical to say the least.
That's a quote from the last time I saw all three of them together. We ended up in the rather unpleasant argument over the existence of Sam's Lyme disease at the dinner table. Frustrated and embarrassed to find myself fuming, I wiped away tears while firmly maintaining my stance. As Janet tried to console my unconsolable self with her loving, gentle tactics, it struck me that my grief and anger was not solely the result of this disagreement.
Yes, I grieved over knowing that for the rest of our lives, they would never believe me over the neurologist. And indeed my ego was bruised at their perception of me as the emotionally unstable, misinformed one, which might carry on indefinitely through future rites of passage—all of which I expect them to be a part of. But, on another level, I mourned for the thousands of us who have stood in my shoes and been told we're wrong or stupid, and our gut-wrenching feeling of powerlessness.
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