Lyme and My Cavitation Adventure – Part 1

Hey lovely readers!

It’s late October, which can only mean one thing for us Lymies: an abundance of candy and yummy treats EVERYWHERE that we can’t eat.

What torture.  There are delicious toxic sugar and gluten bombs sitting in large bowls at every counter and lurking in every corner.

Ugh.  Not this again.

Well, to be fair, two Halloweens ago I was among the rest of society stuffing my face with rediculous amounts of Reeses and other little Snickers and Milkway bars.  Because I’m pretty sure the “fun size” ones are negative calories like celery – you burn more calories just trying to open up the wrapper.  And you can eat like 700 before it counts as one regular sized one, right?  I mean, I don’t know, that’s just what I was told.

But last Halloween was drastically different.  I was in the beginning stages of the Lyme treatment process, but I was already on a very strict anti-Candida, anti-mold, and anti-yeast diet.  (It’s about as miserable as it sounds).  My mom wanted me to help her hand out candy and I was all, “Are you kidding?! I’m going to go lock myself in my room now, try to convince myself that I’m full from my dinner of plain broccoli and chicken breast, and cry about all the things I’m not allowed to eat.  Thanks for rubbing it in.”

Now it’s a year later, and while I’m not on the Candida diet (thank goodness), I just completed a week of eating only liquids and then pureed foods – which is equally as sucky and lifecrushing.  So no, there’s not a chance in hell I’ll be handing out any candy this year either.  I cannot be held responsible for what might happen if candy is left unsupervised in my possession.

Candy Eating

Mmmmm skittles.

Side note:  There is this really cool thing called the Teal Pumpkin project that I hope gains more awareness.  (See below).  I could see myself participating in something like this once I have my shit together or when I’m older and have kids (whichever comes first, hopefully the former).  I’ll definitely be the one all the neighborhood kids hate for handing out healthy organic treats or non-edible trinkets.  Ain’t no shame in my Halloween ruining game.  Kids, you’re welcome, your teeth and your health will thank me later.

The-Teal-Pumpkin-Project-2

SPEAKING OF dental matters…

In case I haven’t mentioned it enough, (some of you in my personal life are probably like “Shut up, we know”)…

I had my third and FINAL cavitation surgery last week.  (WHOOOHOO!)

Well, I can’t exactly say final because there’s always a chance that cavitation surgeries have to be re-done if the bone and tissue doesn’t re-grow and fill in properly.  But I’m not allowing myself to think like that.  (I am healing, I am healing, I am healing…  I’m healing, damn it!)

Last time I talked about cavitations, I didn’t finish telling the whole story.  So this series of posts is my attempt to catch you guys up on what has happened in the last 4 months since I pushed pause on my Lyme protocols and decided to pursue holistic dental treatment.

In case you missed the first cavitation post, here are some highlights:

  • Cavitation = a hole in the jaw bone that forms after a tooth has been improperly removed, and the area failed to fill in and heal
  • Cavitations are actually very common.  (Upwards of 90% of routine extractions turn into cavitation infections.)
  • Cavitations are filled with all sorts of icky gunk like osteonecrosis (dead mushy bone), rampant bacterial infections and sometimes even gangrene.
  • Cavitations are considered foci infections in the mouth that have systemic effects.  (All the bacteria and toxins that are breeding like rabbits in these nice little convenient pockets eventually leak out into the rest of the body, causing a wide range of health problems.)
  • Lots of people that have Lyme disease have cavitations but may not know it.  (Like we need any more things wrong with us…)
  • Cavitations severely compromise your immune system (which may or may not be super vitally important when you’re fighting Lyme…*joke*).
  • Cavitations are the perfect environment for Lyme spirochetes to hide and breed.
  • Therefore, they need to be cleaned out in order to fully recover from Lyme.  (You need to plug the hole before you bail water.)
  • Conventional dentists will look at you like you’re a unicorn on drugs if you ask them to check you for possible cavitations.

If you want more information about cavitations, I suggest you check out these links:

So, after stumbling across all this information about cavitations, it made too much sense to ignore.  I KNEW in my gut, this was an issue for me.  Because I experienced such a rapid decline right after I got all four wisdom teeth out in 2008, I felt like there had to be a connection.

[If you haven’t read part 1 of my Lyme story – long story short – I was a relatively healthy high school kid before I got my wisdom teeth out, and basically a crippled geriatric after.]

So in June, I began my hunt for a biological dentist.  Biological or holistic dentistry compared to regular dentistry is similar to what alternative medicine is to traditional western medicine.  Biological dentists believe that your teeth are an integral part of your body and that dental health (and related dental procedures) greatly influence your overall health and well-being.  (Whatta novel concept!)  They focus on nutrition, prevention and non-surgical intervention, using biocompatible materials and correcting toxic dental procedures (amalgam fillings, root canals, extractions).  So basically, they kick ass.

I needed a new dentist anyway.  My mom had been pestering me for a while about how it had been almost two years since I got my teeth professionally cleaned.  (I know, I’m gross… but before you judge – I had a good reason).  Ever since we moved to Maryland I’ve had horrible experiences at the dentist we see here in Frederick.  A few years ago, they belittled me and made me feel like an idiot when I requested that they cover my thyroid while getting X-rays (to decrease the amount of unnecessary radiation… since they bullied me into getting x-rays frequently by threatening not to treat me if I didn’t.  At that time, I was much less experienced at the whole “assertive, empowered patient” thing.)  When I returned a year later, they finally caught up with current research and now had lead X-ray bibs with a flap that covers your neck for that exact reason.  (*Shaking my head*).

dental meme

On top of that, they always pushed fluoride on me and several unnecessary, torturous dental procedures.  So when their annoying little “You’re overdue for a dental check-up!” post card would arrive in the mail, and my mom would nag me for the 15th time to go get my teeth cleaned, I would be thoroughly pissed.

[Cue bratty pre-teen tantrum:  “Mom, I TOLD you I’m NEVER going back to them.  And I already have enough medical appointments on my plate, I can barely keep them straight.  I do not have the energy nor the time to go to some ignorant DENTIST who’s just going to screw my health up EVEN MORE!  *eye roll*  *dramatic sigh*]

(Sorry Mom… It was the Lyme Rage.  Oh… that’s not a valid excuse?  Crap.)

I tried to find more holistic dentists in the area but, of course, none were covered by insurance.  Surprise surprise.  And when we were already spending thousands of dollars on other medical practitioners who also don’t accept our insurance, I wasn’t going to ask my parents to pay for a dentist too.

Until now.  It was too hard to ignore.

After doing a bunch of research, I learned that there is absolutely no way you can go to a conventional dentist for cavitation issues.  They don’t even acknowledge that they exist, or know how to check for them.  And if you do happen to have a more open-minded dentist who listens to your issues and realizes that you do in fact have cavitations, he/she likely will not be skilled enough with the topic to treat you properly.

So at the bare minimum, you really need a biological/holistic dentist.  But the best case scenario is finding a biological dentist with a Cavitat machine.  These things are like gold.  There aren’t many in the country but they are invaluable.

A Cavitat machine is currently the most accurate way to tell if you have cavitations.  Because cavitations offer no signs of infection, and the gum at the extraction site looks superficially healed, its difficult to tell whether the bone underneath has re-grown or if there’s a giant gapping hole of bacterial mush instead.  And because bone is naturally a porous structure, it is very difficult to see cavitations on x-rays unless they are severe, and even so, severe ones are hard to distinguish.  The Cavitat machine is more like an ultrasound and uses sonography to tell if there are large holes in your jawbone.

After a lot of searching, I found a holistic/integrative dentistry center in my state only about 45 minutes away.  My acupuncturist had actually been to one of the dentists in the practice and swore by him.  So I called to inquire about whether or not they had a Cavitat machine, if they did cavitation surgery, if they offered other means of treating cavitations such as ozone therapy, and about costs.

They did in fact have a Cavitat machine AND… a very skilled dental surgeon who has performed many cavitation surgeries.  I was SUPER excited.  However, the process of becoming a new patient meant that we had to drop about $1000 dollars on two separate appointments before we could even find out whether or not I had cavitations…  And because I was only going to see a dental hygienist on the first visit, it was going to be about a month before I got to speak with the dental surgeon…  So we weren’t happy about that.

But if there’s one thing I’ve learned from being bounced around to different doctors and emergency rooms for 6 years straight ==>  If they don’t accept insurance, they’re most likely the skilled and educated docs that you want to see.  And unfortunately, you have to pay an arm and leg to see the good ones.

Eventually after some deliberation, my parents and I decided to go through with it.  If I had asked my parents to take a gamble on seeing a dentist guru for my unconfirmed invisible jaw infections a year earlier, the answer would have been a firm no.  But if you read my first blog post about cavitations, then you know how very deeply I was struggling physically and mentally at this point.  My parents were watching me deteriorate each month and were beyond concerned at this point.  Even though we had invested a lot of time, energy and money in various treatments and doctors, it was time to cut our losses and change course.

Normally, it would have been way too much to handle between doctor’s appointments, physical therapy, acupuncture, massage and blood work appointments etc., but it just so happened that I was about to break-up with my second Lyme doctor in 9 months, so that would free up some time.  (“I swear, it’s not you, it’s me….  I’m not getting any freaking better!”)

fired

So it was time to explore the dental route.  I called them back to schedule the new patient evaluation and made it clear I only wanted to go through with the process if I could have the Cavitat screening done.  I was assured that a technician would be available.

So on June 19th, four days after my 24th birthday, I awoke excited to go figure out whether or not I had cavitations.  This was it!  I was finally going to find out if there was a different reason – other than Lyme disease – that explained why I always feel like I’m dying a slow death in my early twenties.  I was SURE they were going to find cavitations and I would get started with a new treatment plan that would allow me to finally regain my health.

Overall I was impressed by the office and the staff. I met with a few dental hygienists who did a comprehensive health history, full dental exam, digital X-rays, photographs, a heart rate variability test, bite/occlusion test, and an immune system Zyto scan.

Things were going great!  But then the drama started – let me try to quickly summarize this:

  • At the end of the appointment, I was informed that the Cavitat had unexpectedly stopped working that morning.
  • We returned to the waiting room while they tried to fix it.
  • My dad and I started talking to another patient in the waiting room who also had Lyme disease; she explained that she had cavitations but needed to get all of her amalgam fillings out first.
  • They came out and told us they couldn’t get it to work, that they would have to call someone and maybe get parts or order a new one.  We would have to reschedule once it was fixed, but they couldn’t tell us when that would be.
  • Random waiting room lady started going on and on about how unfortunate it was that it broke and how the guy who makes Cavitat machines is now dead and how you can’t buy them any more due to some FDA restriction and how OMG THATS SO HORRIBLE and what are you guys going to do?
  • The receptionist offers little apology, tells us that we need to check out and that it will be $400 for today’s visit.
  • Dad and I then calmly convey our dissatisfaction about how I didn’t get the one specific service that we requested and were promised.
  • Receptionist lady reacts poorly and unprofessionally and demands the money.
  • Dad reacts even more poorly, and says he’ll pay for it now, but if the Cavitat machine doesn’t ever fixed, he isn’t afraid to settle the matter legally if it comes to that.
  • My dad tosses his credit card onto the desk instead of handing it nicely to the lady.
  • Things get very uncomfortable.
  • Everything is now awkward.
  • Lots of pursed lips and tense faces.
  • Negative vibes everywhere.
  • We leave.
  • I feel weird and super disappointed.
  • Later that day, I get a phone call from the dentist.  Thinking that the Cavitat machine was miraculously fixed, I pick up.
  • Receptionist Lady tells me that she talked to the Doctor and he said we should be refunded for the $400.
  • Surprised, I say, “Hmm. That’s generous but that’s not necessary really, we just hope the Cavitat gets fixed soon.”
  • She says, “No…. Were refunding it.  There will be no cost for today because the Dr. decided were not going to take you as a patient because your dad threatened us with a lawsuit.”
  • Shock.
  • I see my hope of getting healthy fading away fast.
  • Tears.
  • I apologize for my dad’s frustration and beg them to take me as a patient, she says she’ll have to discuss it with him again, and they’ll call me Monday.

sarahmichelle_447685

Seriously?!

I was so confused and upset.  I started questioning everything.

Before the appointment, I was in a very hopeless place because none of my many treatments were providing me any relief.  So I began meditating to try to focus on my intuition, and I began asking for guidance from the universe so that I could be led toward whatever I needed to do next.  (I know this sounds very “woo-woo”, and believe me, before I got sick I was very skeptical about anything not proven by empirical evidence and research studies.  But when your chronically ill and treatment isn’t making you any better, eventually you try all sorts of hippy-dippy shit like positive affirmations, visualization, setting intentions, inviting healing energy etc.  And call me crazy but I think exploring these things is an important part of any healing journey.)

Everything in my gut told me I had cavitations. S o when this hiccup happened, I started to doubt everything.  And I couldn’t ignore the negative energy from how everything played out.

Now I don’t know whether or not you guys have realized this yet, but I have the tendency to become sort of a train wreck when it comes to handling minor speed bumps.  So logically, the only thing to do is blow everything out of proportion and obsess over fake scenarios.

>> What did this mean?

>> Why did this happen?

>> Is this a message?

>> Maybe I wasn’t supposed to go to this dentist.

>> Is this is a bad omen?

>> Maybe I don’t even have cavitations.

>> I should’ve seen the other dentist I called.

>> What if NO other dentists will take me now because they all think I’ll sue them?

>> Maybe I have the worst cavitations anyone’s ever seen but no one will treat me.

>> Maybe I have to see a Lyme expert across the country finally get better.

>> Will I ever get better?

>> Maybe I’ll never get better.

>> Maybe I’ll be sick and dependent on my parents for FOREVER.

>> Omigod omigod.

>> Maybe my parents will go bankrupt and I’ll still be sick.

>> But maybe I won’t even live that long.

>> Am I’m dying?

>> Is my name even Lindsey?

>> What’s happening?

>> WHAT DOES THIS MEAN?

>> HELP!

I slept through took enough Psych classes in college to know that this is a pattern of distorted thinking called catastrophizing or snowballing – but knowing that doesn’t stop my brain from doing it.

And let me tell you, it’s really freaking difficult to not catastrophize when you’re “stuck” in chronic illness.

But long story short – a few days later they called us back and said I could still be their patient.  A week later the machine was finally fixed and I went in for the long awaited Cavitat scan.


I’m going to stop here and continue later.  I always have high hopes that I’ll be able to cram everything into one post but I routinely underestimate the amount of tangents and useless detail in my writing.  And I can’t decide what’s more annoying for you readers – breaking up stories into “Parts” or droning on and on in posts that are WAY too long.  Since none of you have complained (yet), and its way past my bed time, I’m going to continue the rest of my cavitation journey in Part 2!

Xoxo,

Lindsey

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8 thoughts on “Lyme and My Cavitation Adventure – Part 1

  1. I feel Ya on the air diet. I’ve been eating the same thing for a very very long time because everything that is harder to digest makes me swell like crazy. I just had four days of eating anything my heart desires (minus gluten) and now I’m onto the next phase of starvation through broccolli chicken and fish as I hope my GI tract will heal -_- damn lyme. I wish you the best of luck

    Liked by 1 person

  2. Pingback: “You Had What Kind of Surgery?” | Lindsey's Lyme Life

  3. Hi Lindsey I hope your 3rd cavitation surgery did the trick for you! I had 6 cavitations operated on jan 13th. I only had 3 days where I noticed big good changes and then got reinfected again. I was given ABX which helped for a bit but a week after I stopped them back in the same boat. I’ve had 2 sets of ozone injections into the gum but it’s not cleared out fully still. The dentist looked at my CT from last Nov and said the tooth next to 2 cavitations also has a cavitation on the back root this wasn’t addressed in surgery and explains why that tooth hurts it’s not referral pain but infected. I wonder since 17,18 & 19 were all infected, if either 19 reinfected those 2 again or they simply missed a titch in each? but 4 out of the 6 sites are as painful now as before the surgery. My dentist hasn’t replied to my question about #19 or what to do, I told him of this dentists findings. It’s clearly seen on the CT. The disturbing thing is the money, time and health problems, when the first surgery isn’t enuf. I did PRF & ozone. Any input suggestions is welcomed. Hope you are doing well.

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    • Hi Jill! Wow, so sorry to hear you’ve had a horrible time trying to fix your cavitations! My heart goes out to you, the surgeries are not fun, by any means, and to get reinfected must be discouraging. Hang in there! You’re taking the right steps to get the bad stuff out. Unfortunately I don’t have much in terms of advice for you, it sounds like you’re doing the same things I had done (Ozone, PRGF). I know my dentist used also used a low level laser during the surgery, and after the surgeries I returned for a few sessions with the laser and a PEMF machine to try to speed the healing. Other than that, I just took lots of vitamin C and other nutritional supplements, with bone broth and green juices and smoothies, and crossed my fingers, hoping that everything would heal. Did you get the surgeries done by a holistic dentist? Also did you get all 6 cleaned out at once? I sincerely hope you can figure this out soon and get on the road to wellness! Sending positive healing vibes your way

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  4. Great info, been on a healing road for quit a long time, doing better, just had a cavitation repaired and done correctly and another where a tooth had to be pulled and the bone cleaned, my teeth seem in good shape now.

    I have an amazing biological dentist in the beach area in Tijuana Mexico, it’s a suburb and it’s called Playas Tijuana. Here is his website http://odontomedik.com/ God bless you all, “All things are possible for him who believes. Troy, if anyone really needs some pray, you can call me at 949-291-0952. Glory to God for His faithfulness, In Chris’t love, Troy

    Liked by 1 person

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