""...my clinical impression is that in many patients with eating disorders, particularly those with long-lasting and persistent symptoms, the disorder appears to have a biological background," said Dr. Raevuori.  In other words, 'autoimmune processes appear to contribute to the onset and maintenance of EDs -- at lease in this subpopulation of patients,' note the investigators."*

That quote resonates with me greatly because it hits home on a very personal level.  As many of you know, I'm very open about my struggles, and I've always been that way in the hopes that through sharing my story and being honest, open, and willing to talk about things others may deem taboo, someone, somewhere may find it helpful or be able to relate and garner hope from what I share.  And as I always say, if I can even help one person, everything I've ever done will be worth it.  But that's a bit of a digression, so back to the topic at hand.

This is a super important discovery to me, because in 2003, before we ever discovered that I was dealing with Lyme & Co's and have been since I was a young child, I started struggling with anorexia, a battle that has waged on for 11+ years, all through high school and college, and that has taken me across the country multiple times to be admitted to treatment centers.  I feel no shame in admitting that, because as I was just recently discussing with my mentor, the journey I've had and the lessons I've learned as a result of it are part of what has helped make me who I am today, but I can't explain to you the number of times I've sat here through the years and had the following conversation with myself:

"Becca, you are a smart person.  You're intelligent, you learn quickly, you excel at whatever challenges you wholeheartedly undertake.  Why on earth have you dealt with this eating disorder for so long, despite being in some of the best treatment centers in the country, having an insanely large arsenal of coping mechanisms and knowledge about nutrition and recovery, and having a wonderful support system in your family, friends, mentor, college staff, and therapists?  Think about all of the girls/guys/women/men you've met along the way the past 10+ years who, in the time that you've known them, have started struggling, gotten help/treatment, recovered, maybe even relapsed, and recovered again, and are currently leading ED-free lives, all while you've been unable to do the same.  Your high school classmates, your college friends, people you met while in treatment--so many of them were so sick, and some were sick for many years, yet even those who you thought may never recover (and who admitted they thought they were lost causes) have left ED thoughts/behaviors in the dust and are running marathons, exploring the world, having children, and/or getting so far ahead in their careers.  You are every bit as smart as anyone who has been able to do that, and you've had more experience with treatment and therapy and coping mechanisms and recovery-homework than most of them ever had to endure, yet here you are, unable to leave it behind you.  What gives?"

Now, before I go any further, I want to make one thing clear.  Yes, I have written more than once about how Ed has taken a back seat in my life even since Lyme & Co's became completely debilitating in January of 2013, but I'm not going to pretend that the same thoughts I've had for 11+ years have magically disappeared or don't still try their darnedest to take over my mind.  The reality is this: the thoughts are still very much present--something I'm a little hesitant to admit, simply because I've been so vocal about how they've dissipated in light of current health battles--the Ed voice still makes its way into my mind daily, I'm just better at not acting on what it says or engaging in disordered behaviors or patterns because I know that is what I have to do if I want to live.

But guess what, folks...

WE FINALLY HAVE AN ANSWER.

Think about it: We now know I first contracted Lyme & Co's when I was as young as 4 or 5 (or at least Lyme and a few of my co-infections...I think a bite at the Governor's Scholars Program in 2006 contributed to some of the co-infections, as well).  I developed my eating disorder in 2003, at age 14.  The years that followed not only began my journey through a slew of doctors and autoimmune (mis)diagnoses (all of which we now know are Lyme-related), but began the thus-far-11+ years of battling with my eating disorder, and for the majority of those years, the disorder was getting worse and worse, despite periods where I was at a normal weight and a few periods where I seemed to be doing okay.  Then last year, we learned about Lyme & Co's, and everything it brings with it, and then these study results were released today, specifically mentioning that in people with eating disorders who have persistent and long-lasting symptoms, there is research that shows the disorder likely has a biological background, and that autoimmune processes (ie. everything Lyme & Co's do to your body) appear to contribute to the onset and maintenance of EDs.*

Now, the authors of the study make it a point to clarify that they are in no way assuming that everyone with an eating disorder has the disorder because they have an autoimmune condition that contributed to the development of it.  In fact, the lead researcher made sure to note that she did not want to "belittle the psychological aspects of these disorders, which undoubtedly also play an important role,"* and said that the findings lead to the questions of what is psychological and what is biological, "and to what extent they are separable."  Basically, she said the take-away message from this study is, "these patients' somatic status should be examined comprehensively, keeping in mind that their psychiatric symptoms might at least partly be explained by immunological processes."*

This study is revolutionary and very, very exciting.  I can't explain just how wonderful it is to know that the reason I've been unable to reach that state of lifelong recovery (I don't use the term "recovered," but that's another conversation for another day) could be because we were in the dark about Lyme & Co's for so long, and because I've still got a long road of treatment ahead as we tackle my co-infections and any other issues that com up one at a time.  I also can't explain the very emotional place I'm currently in with regards to this discovery--while it is definitely amazing, it's going to require a lot of emotional work and reconciliation because my journey with my ED and recovery has been part of who I am for 11 years and counting, and regardless of how excellent this news is--the news that once I've treated Lyme & Co's there's a possibility I'll be able to achieve sustained recovery and leave Ed behind once and for all--any major adjustment like that takes time.

But thankfully, thanks to Lyme & Co's, I seem to have an abundance of time lately, so I'm okay with that.

I hope all of you fellow Lymies out there are recovering from the full moon earlier this week!

Much love and God bless,

Becca


*source

Goodness gracious, before I get into any of the topics in the title of this post, I want to apologize for being so absent lately.  Not only has it been over a month since I've been able to post here, but I've also been scarce on social media, including, but not limited to, twitter, facebook, instagram, text messaging (not a social networking site, but definitely an oft-used social networking method) and the like.  In the interest of keeping this blog a place of honesty, I'll admit that I've mentally been having a hard time lately.  I still have zero doubt that God has already started my healing process and will see it to completion, but between the constant physical pain and the current worsened state of my OCD, anxiety, and depression, I've spent the majority of the past month in bed (due to pain and the things mentioned above), with the covers up around my neck for comfort, generally just not wanting to deal with anything.  Which isn't good, as far as emotional health goes, but sometimes this just happens and I've learned to accept it and ride it out until I'm feeling better (which always happens at some point...although I don't necessarily recommend this method to everyone).  I've also spent the past month or so hating my phone every time I hear a text message or call come in, simply because I don't have the stamina to talk to people.  If you've texted me and I've not answered your texts right away, please don't take it personally (resisting urge to say, "it's not you, it's me"), communicating and maintaining relationships is just very difficult for me right now.  I say all this not to garner pity, but to give you a brief glimpse into the reality that even someone who usually tries to stay upbeat and positive has times when things are too overwhelming to put into words.  It's also not that I don't care or don't want to know what's going on in the lives of my family/friends, because I definitely do care and want to know what you've been up to, it's just that trying to hold conversations right now takes more energy than I'm able to delegate, because the energy I do have needs to be conserved and spent on things like showering, changing clothes, eating, and other such necessities.


(Note: This does not mean I want you to refrain from texting/contacting me if you have something to share or just want to say "hi," it simply means that I want to make sure you're aware that if I don't answer you immediately (or even reasonably fast, as defined by 2014 culture), it's only because I'm physically/emotionally unable to answer at that time, and eventually will give your chosen form of correspondence the attention it deserves.)

But enough about that, I have some very exciting (to me) news to share!  If you've been following my journey for any length of time, there's a good chance you've seen me mention trigeminal neuralgia (TN) and how it is absolutely the most painful symptom I deal with daily.  (If you're new to all this, my short explanation of TN as I experience it is this: excruciating and constant stabbing pain in my right eye, ear, jaw, and right side of my head to such a degree that no methods of pain management deliver any relief.)  TN is a result of damage of some sort to the trigeminal nerve, the location of which you can see near the top left of this diagram:

As you can see, this nerve divides into three main branches, and to avoid trying to create my own definitions for these branches, here's a short summary from our good pal Wikipedia (I know, I know, I cringe when citing Wikipedia as a legitimate source, but it works in this instance) of the functions of each of these branches:

• Opthalmic branch - carries sensory information from the scalp and forehead, the upper eyelid, the conjunctiva and cornea of the eye, the nose, the nasal mucosa, the frontal sinuses, and parts of the meninges (thedura and blood vessels).
• Maxillary branch - carries sensory information from the lower eyelid and cheek, the nares and upper lip, the upper teeth and gums, the nasal mucosa, the palate and roof of the pharynx, the maxillary, ethmoid and sphenoid sinuses, and parts of the meninges.
• Mandibular branch - carries sensory information from the lower lip, the lower teeth and gums, the chin and jaw, parts of the external ear, and parts of the meninges. The mandibular nerve carries touch/position and pain/temperature sensation from the mouth. It does not carry taste sensation, but one of its branches, the lingual nerve, carries somatic sensation from the tongue.

So basically, this means that if there is damage to the trigeminal nerve, the effects of said damage can be felt in any or all of the area listed above.  In my case, the pain infiltrates all three areas, to the point where I am rarely (if ever) seen without huge sunglasses on (and if I have the glasses off, 90% of the time I have to keep my right eye shut and/or have something cold on my eye in an attempt to lessen the pain), without having my hand or a hot water bottle against my ear (the cold helps my eye but makes my ear much worse, and vice versa), or without constantly moving my jaw so it will pop (it is a joint, after all), which gives me relief for the split second it actually pops but then the pain comes back and 10-20 seconds later I do it again.

The kicker for all of this is that we haven't been able to find anything to give me any notable relief, and believe me, we've run the gamut of remedies time and time again.  We've been told from a few different sources that "the only treatments for trigeminal neuralgia are anticonvulsant medications and/or surgery to deaden the nerve."  Needless to say, after successfully breaking my 10+ year reliance on multiple strong prescription medications in June of last year, I have thus far refused to accept that my only options for relief would be going on any of the suggested medications (some of which I was on for long periods of time for unrelated reasons during those 10+ years) or having my nerve permanently deadened.  You might be thinking, "Well, Becca, your pain can't possible be that bad if you refuse to try the medication."  And if that thought crossed your mind, let me assure you that this is the absolute worst pain I have ever felt in my entire life.

There's a reason why even the mainstream medical community refers to TN as "the suicide disease," and the reason is because the pain of this condition is so severe that it can make a sufferer feel like there's no point in trying to live anymore because they already feel like they have no life due to the pain.  Many people actually have taken their lives because of this condition (by the grace of God alone I've never been in such a state where I've considered that an option, but from experiencing this pain every day, I can see how someone could be pushed to that point).  Just because I'm not comfortable with the "conventional" treatment options doesn't mean my pain is any less.  I just already have so much long-term damage from the years and years I took every prescription medication that was suggested by my plethora of doctors, and now that I've seen the light of alternative treatment methods (speaking of, who decided that the things God put on this earth in their natural form are "alternative" and the things created/engineered in labs are "conventional"?) and the restorative healing they can bring in countless situations, I just refuse to accept that there's not something out there that can bring me relief.

This next part I'll summarize as briefly as I can, because the end result/discovery is what matters most.  In February, the doctor I see in Nashville recommended I look into seeing a biological dentist after I described how my TN pain was becoming unbearable.  The reason for this?  To confirm or rule out a NICO lesion as a possible source for my TN pain.  A brief summary of a NICO lesion is as follows:

A presence of cavitations in the jaw bone in conjunction with chronic facial neuralgia. The concept implies direct and causal relationship between the bone pathology (cavitations) and pain itself. Pain in this setting is commonly described as atypical facial neuralgia and is chronic in nature. Cavitations represent areas of necrotic (dead) bone. [source]

So the goal was to determine if a NICO lesion in the area of the trigrminal nerve is the source of my pain, and whatever the result was, we'd have a better idea of what treatment options were available to us.  I eventually was able to see a biological dentist in Louisville, who sent me to have the necessary scan done, and then I also saw another biological dentist/oral surgeon who is the expert on reading the scans.  It was this final doctor who confirmed that I have a NICO lesion directly underneath my first molar on the right side (one of my "6-year-old molars"), which not-coincidentally was the tooth I had a root canal/crown on in 2004/5.

What caused this NICO lesion in that particular location?  Well, it was a combination of things, but again, I'll try to list them briefly because this post is painstakingly long already:

• We now know that at the time I had the root canal (2004/5), I had already been infected with Lyme and friends to a degree for several years, even though it wasn't yet completely debilitating.
• When a root canal is performed, it's almost impossible (via most standard dental procedures) to adequately clean every single microscopic part of the fibers/canals in your tooth/newly deadened root.  Unfortunately, bacteria/viruses/infections of any type only require one microscopic entry point to infiltrate the entire area.
• Since my body was already harboring Lyme and friends, the infections seized the opportunity to invade my root/jaw bone area and have a party (ie. multiply continually, causing more damage as time passed)
• Eventually, they had created a completely dead section of bone in the jaw underneath that tooth, but this was very easy for most doctors/dentists to overlook because on the surface, and even with standard dental x-rays, the area looked normal and didn't arouse suspicion.
• Over the past decade, the infection has been growing, and we think that once Lyme et al. went into hyper-drive in January of last year (also the time this pain became consistent, and eventually constant), this was one of the most-affected areas of my body.

Figuring all of this out was such a relief.  Not that I'm excited to know that there's a section of dead bone just chilling out in my lower right jaw, but I am excited that we finally know what is causing this pain and we now have a plan for treating it that doesn't require prescription medications or nerve-deadening surgery.  However, in the interest of not adding several paragraphs to this novel-length-blog-post, I'll share about the treatment we've decided to try in another post (hopefully it won't take me a month to type it!).  Although I will mention that there will be lots of talk about ozone (and not in relation to climate change or the debate of the existence or non-existence thereof...because controversy doesn't lend itself to healing!) :-)

As I close, and in honor of yesterday marking the start of classes for Centre College (yep, it was Labor Day), I'd like to leave you with a message I heard courtesy of President John Roush many times in my 4 years there.

Do your best.  Be your best.  No regrets.


There will probably be a post centered around that quote at some point in the future, but for now I say it with the following clarification:  Doing your best and being your best doesn't necessarily mean going out into the world and tackling a radical, world-changing mega project.  Sometimes, especially when dealing with chronic illness, it simply means continuing to fight for your life, making it through another day, and never, ever, ever giving up.

God bless,

Becca