The State of Lyme Disease Recognition: OUTRAGEOUS

Every single person should be outraged about the state of Lyme disease awareness. Every single one.

Why? Statistically, whether we realize it or not, every single one of us knows someone with a chronic illness of some kind. And those loved ones are likely being told that their body malfunctioned for no real discernable reason, that they’re just unlucky. Those patients – your loved ones – are being given treatment for their conditions that may alleviate their symptoms, may even slow down disease progression, but will never address the underlying problem or get them well. And as we all know, chronic illnesses tend to beget more chronic illnesses. Ever wonder why?? There’s more to the story than we’re being told.

I personally had to be diagnosed with TWELVE incurable chronic illnesses before I W-O-K-E U-P:

1. Migraines (age 10)
2. Arthritis (age 11)
3. Carpal Tunnel (age 18)
4. Multiple Sclerosis w/ Optic Neuritis (age 21)
5. Plantar Fasciitis (age 30)
6. Fibromyalgia (age 31)
7. Chronic Fatigue Syndrome (age 31)
8. Sudden Sensioneural Hearing Loss (age 31)
9. Labyrinthitis (age 31)
10. Hashimoto’s Disease (age 31)
11. Generalized Anxiety Disorder (age 31)
12. TMJ Disorder (age 31)

So why be outraged? Because some of these very loved ones are being ROBBED of their chance to understand what’s really going on, and get the treatment they really need. I was robbed of my chance to get well twelve times. Lyme is so unrecognized by most doctors to the extend that the disease literally never even occurs to most of them. This bug is very likely behind a much larger percentage of chronic illnesses and mental afflictions than we realize, and it’s not getting diagnosed or treated. And, unless they fall COMPLETELY apart like I did and get loud and angry and start demanding answers beyond “you’re just unlucky”, poor patients afflicted with Lyme underneath these other conditions are almost never catching onto the true culprit, and are instead managing symptoms of secondary conditions and never getting truly better.

I know I’m on my soapbox a lot about this, and thanks for baring with me. But it’s for good a reason – we should all be very concerned this is not getting more attention. Attention from our doctors, our Center for Disease control, our government.

Even the most conservative estimates say 300,000 new patients contract Lyme in America every year. That’s more than breast cancer, HIV and West Nile COMBINED. And the experts specializing in Lyme? They suspect the true number to be quadruple that rate. Add in that it’s potentially spread with sexual contact and our blood banks and organ donation programs don’t currently screen it out of the donation pool, and this is a real problem.

Given these statistics, the prevalence of Lyme disease, the number of known associated conditions and the abysmal level of recognition among mainstream practitioners, the fact is: Lyme disease probably affects someone you love and they don’t even know it because their doctor hasn’t thought to check for it. Or they did, but they ran the wrong test (standard tests are about 40% sensitive). Last year alone, I saw at least 10 doctors and had one insensitive Lyme test before I finally got the right test. ((Ten. Doctors.)) And in the end? I had to educate myself and ask for the right bloodwork from my doctor.

The UK has a powerful new Lyme advocate, and it’s well needed. This is a great quick watch on the state of Lyme in general. And it’s appalling.

Join the conversation. Share this blog. Get mad, because you have every right to.

To learn more about Lyme disease, visit:

• ILADS.org
• Under Our Skin documentary (free on Hulu)
• Lyme Disease Group on Facebook

For proper testing, ask for the Western Blot sent to Igenex laboratory. And get a Lyme-Literate Doctor to interpret your results (referrals available at ILADS.org).

Lyme stole my “pretty!”

Anyone else feel like this?! I blame Timehop. I used to love when my Timehop app told me my day’s Timehop was ready. I’d cruise through the photos I’d posted to social media on that day one year ago, two years ago, three years ago. Now, more often than not, those pictures make me sad. I miss the way I used to look.

Lyme has impacted my life in a lot of ways, and the way it’s impacted my appearance, well I wish I didn’t care as much but I do.

Lyme changed a lot about the way that I look. My hair fell out (so I cut it off). I’ve lost 30 pounds so far. My boobs are deflated and I don’t have a butt anymore. My skin has gotten dry and flaky, my lips always chapped. My eyelids get inflamed and crack whenever I wear makeup now. (Seriously, what the heck, Lyme?!) And the sort of sizable muscles I used to have from crossfit are long gone.

I look back on pictures of my old self and I miss my long hair. I miss healthy, glowing skin. I miss that baby fat in my cheeks. This girl didn’t have a care in the world:

 

This one, on the other hand, has a concern or two (and a heart monitor strapped to her chest):

This is the same pair of jeans in this picture! 9 months apart.

 

And don’t even get me started on the sun-hiding fashion choice Doxycycline has forced me to make!

When I get upset about this stuff, I tell myself looks don’t matter. And honestly, I know I still look ok. People tell me all the time how great I look (thin is in, I guess). And the truth is, I don’t think it’s my looks REALLY that bug me. There really aren’t even that many attributes about my appearance that I particularly dislike right now.

It’s mostly that when I look in the mirror these days, I don’t see myself. I see a sick girl. And no matter how many people tell me how great I look or how healthy I appear to be, I see sick.

I’m trying hard to appreciate my body for all the work it’s doing right now. When I make it up a hill on a walk without sitting down to pant a while, when I sleep through the night, when I get through a work day and still have energy enough to make dinner, I praise it big time. My physical self, it’s going through a lot right now, and the last thing it needs is for me to give it shit for not looking good enough while it does it. That will come in time, I am sure.

But I’m learning it’s important to mourn too, and express the things that make us mad. So while I fully accept and love this body for all it is right now, I am sure sure mad about what has been taken from me. And that’s ok too.

Treatment Recap: Month 3

Holy moly month 3. What a rough one. I felt awful this month. But maybe that’s a good thing?

I caught my first cold in over a year. You see, I had the incredible privilege of officiating the wedding of two of my best friends at Mt. Rainier on September 5. Only, Mt. Rainier was about 20 degrees cooler than any of us had planned for… and riiiiight as we ladies started heading down the isle, the skies opened into one of the most dramatic icy downpours I’ve ever seen! It was actually kind of hilarious how bad the timing was. The bride and I shivered through the whole ceremony (poor groom didn’t know what to do with us). Pretty much everyone got sick after that.

So on top of my usual Lyme crud, I also had a horrible sore throat, congestion and overall sense of weakness and junkiness. Took me two weeks to get over. But I’m telling myself this is a good thing! You see, my body mounted a defense!! I don’t actually think I’d been cold-free for the previous year and a half. I think I was picking up viruses and such as usual, but my body just didn’t do anything about them because my immune system was so suppressed. When the runny nose came on, I got excited. I had some immune activity! The joy quickly passed as I remembered how miserable colds are. Heh.

I also increased my doxycycline this month and added LymeStop to my antibiotic treatments, so it’s been herx city.

Things I struggle with lately include:

• General weakness, feeling tired, woozy, off balance, sluggish and sore.
• I get sweaty and have heart palpitations with even minimal activity.
• My low back feels like an old lady’s. Difficult for me to pick something up off the floor without holding onto a ledge for support.
• I have vivid, vivid nightmares and wake up with anxiety and a racing heart that make it difficult to get back to sleep.
• As is usual for me, I continued having horrible pressure headaches with pain at the bridge of my nose, base of my skull and jaws.
• A vague plugged ear feeling at times, especially with activity.
• Consistently blurry vision that worsens with fatigue.
• Worsening this month: Sporadic light sensitivity, holes in my vision and sometimes zig zaggy lines in front of my vision.
• A continued lack of appetite.
• New this month: Nausea, bloating, heart burn.
• Still the ever present stiff neck and ringing ears.
• Weight loss: I lost another 6 pounds this month, taking the grand total to around 30lbs down.
• Continued low body temperature, averaging about 95 degrees.

Some things I’ve noticed less of this month include:

• Numbness and burning in my hands and feet.
• Muscle jerks / myoclonic seizures I have at rest.
• Still, very little brain fog.
• Far fewer episodes of fight/flight (except when I have nightmares), and very little depression and anxiety.
• Only minimal episodes of exaggerated emotions or rage.
• Very little jaw pain.
• No joint pain this month (hollah!)
• I’ve been able to walk around barefoot more often without pain in my feet or cramping in my calves. Neat! I even wore regular, non-orthotic sneakers one day.
• My hair doesn’t appear to be falling out anymore. Gonna try to grow some back!

Thanks to the cold and herxing, it was difficult to keep my eye on the prize in September. I admit I lamented a few times that treatment must not be working. Then I remembered, I am only 3 months in. And I *AM* getting better.

Although I now believe I’ve had Lyme for nearly 20 years (and Lyme-induced MS for 10), I’m coming up on my one year anniversary of being really consistently sick. It was October 19, 2014 that I woke up without hearing in my right ear, and things went downhill quickly from there. I haven’t felt normal since. And I have been feeling really blue about that, sad that I’ve been so distracted from my life by feeling so cruddy for so long.

But the truth is, I’ve improved a lot this year. Even before my Lyme diagnosis, I made huge improvements by treating the vestibular disorder (caused in inflammation of my labyrinth, middle ear) and hashimoto’s thyroiditis. I made improvements with vestibular rehabilitation, diet modifications like removing gluten and supplementing my thyroid hormones. I came a long way. And now that I know what’s really causing all this distress, now that I’m onto the real bug, things can only get better.

Month 4 starts now. We’re changing up my antibiotics. My doctor suspects I wasn’t quite strong enough for rifampin yet, so I’m quitting rifampin and plaquenil in favor of omnicef and Bactrim. Hopefully I’ll see continued gains with perhaps a little less suffering through October.

Patience is not my strong suit. And this whole Lyme business, it’s a good lesson for me.

Onward.

-k

Trying a new treatment: LymeStop

It’s been 4 months since my late-stage Lyme diagnosis, and I’ve had lots of ups an downs since then. One thing I’ve come to learn is that the path to wellness is not at all clear, and is probably different for each one of us. This month, I added a new modality to my own treatment: LymeStop.

I had heard about LymeStop months and months ago, shortly after I first began to suspect I had Lyme, but before I had been diagnosed. Scouring the internet for answers about why I was suddenly falling apart, I’d come across Lyndsey’s blog. Her list of symptoms, so similar to my own, are what finally convinced me that I needed to open my mind to the possibility of Lyme and get tested. I made a mental note at that time that she credited LymeStop, along with antibiotics and other adjunct treatments, as part of her route to wellness.

Once I was diagnosed, my amazing crossfit community pointed me toward even more success stories. One of the first and brightest was my friend Lisa. She also credited LymeStop as a major part of her healing, in combination with holistic therapy. This woman posts videos on the regular of her tossing big weight around the gym, she is a SERIOUS inspiration.

With those two stories, as well as those I’d come to find in the LymeStop Support and Information Facebook group, I made my appointment and waited. Desperate to stop the loss of function, I did start antibiotic therapy in July, and will be continuing that even as I follow the LymeStop protocol. It’s true, I won’t know which modality helped, if I do get well. And as a girl who specializes in running clean tests with discernable outcomes in my day job (marketing), it’s hard to accept that I won’t know which worked. But I remind myself that I am not a science experiment, I am a woman using every tool at my disposal to get well. And I personally don’t care WHICH works, just that one does!

On Thursday last week, I packed the boyfriend and my two dogs into the car and off we went to Idaho. I was skeptical, for sure. There is no scientific evidence that this method works. But then again, there is no scientific evidence that long term antibiotics work either. In fact there are no scientifically-proven suggestions at all about what I should do! And as I always say, “there are no atheists in the fox hole”. I’m willing to try a lot of things I’d never have gone for a year ago.

So. What was treatment like? It was interesting!

I had two appointments each on Friday, Monday and Tuesday, finishing earlier this week. My first appointment was the longest, during which Dr. Smith used muscle testing to determine which infections and challenges I face. This included testing for Lyme, co-infections, viral and fungal infections, parasites, and environmental sensitivities.

I haven’t ever had muscle testing before, but I understand the technique Dr. Smith used is pretty standard (it’s similar to the method described in this article).  I sat in a chair in front of him, and he held my arm in his right hand while touching various substances to me with his right. By monitoring my body’s reaction to each, looking for weakness in the arm he held, he was able to decipher my issues.

He quickly caught onto my Lyme viruses, of course, and Bartonella. I am a classic presentation of each of those. Interestingly, he also quickly diagnosed a fungal infection in my sinuses. This was super heartening to me! Although I hadn’t mentioned it to him at all, I’ve had swollen, irritated sinuses for years that has been described as “allergic sinusitis” by ENTs and MDs of all kinds, but that didn’t make sense to me because all my allergy tests have been negative. Doctors would occasionally rumble about an underlying infection (and I’ve tried bunches of antibiotics) but I never improved. Maybe this will be the end of stuffy noses for me! Dr. Smith also found liver dysfunction, parasites and a Lyme virus in my heart. No real surprises there as these are common in Lyme patients. Strangely, Dr. Smith also found SIBO, babesia, mycoplasma and protomyxzoa which has never been suggested to me and I don’t exhibit classic symptoms. (Yikes – not sure what to believe there!)

After all the diagnostics, treatment began. His treatment, based on his CBT allergy treatment techniques, involves physical locating the sources of infection in your body with his hands, and then placing magnets over key parts of your brain and body to direct your own immune system to the source of infection. Each treatment is only about 15 minutes. I had two a day, spaced 3 hours apart.

After the first day of treatment, I felt really tired and had exaggerated emotions. This is a typical herx for me, but may also have been the stress of the travel, and the overwhelming experience of all that swift diagnostic work. Lyme is scary and overwhelming, it’s hard to know which are my authentic emotions and which are exaggerated by my condition. But I took this possible herx as a good sign.

During the weekend I felt pretty well! Very Lyme normal. But we took it really easy. Spent the weekend getting lots of rest, we hung out on the back deck of our lake-side cabin, took the dogs swimming, I enjoyed reading the Harry Potter series for the first time. I slept about 12 hours a night!! The quiet, not-much-to-do nature of Northern Idaho might have been just as healing as any medical treatment itself.

I had two treatments Monday and felt just fine. But after my last treatment on Tuesday, pretty epic fatigue set in. We drove home to Seattle that day, and I slept in the passenger seat. Sleeping in cars is very odd for me, so that was telling.

The day after treatment, Wednesday of this week, I felt AWFUL! I was able to go to work, but I was so nauseous that I was constantly scanning the rooms for places to gracefully throw up if I needed. (Is graceful vomiting even possible??) I felt tired, sweaty, woozy, I had heartburn, indigestion and bloating. I felt almost fluish, weak and tired. Nausea is a miserable condition, it makes it hard for me to appreciate anything else around me.

Thankfully yesterday, Thursday, was a really good day! I went to work (including a grueling commute to a far away campus – 1.5 miles of walking and an hour on the bus each way). I felt really tired and weak. Walking home at the end of the day was extremely challenging for me, as I was a bit wobbly and very slow moving coming up the hill from downtown Seattle. But other than that I felt great. I noticed none of the nausea or abdominal discomfort that day and even my ever present pressure headache wasn’t around. Nice! My eyes were extremely blurry, which I notice gets worse with my fatigue, and my ears are always ringing. But overall this was the lowest volume of symptoms I’ve had in a while. Promising!

Hard to know how things will go, so I’m just taking each day as it comes. If LymeStop goes the way they say it will, I will experience up to 6 weeks of detoxing and should start to see improvement after 3 months. I’ll be reporting on progress as I go, of course, so stay tuned.

In the meantime, here are a few fun pictures from the trip: