Turning Lyme(s) into Lemonade

As I mentioned here, May was Lyme Disease Awareness month. (Phew, guess I’ve been busy being sick! Two months late with this post!!) I am acutely aware of Lyme Disease every day, but prior to my diagnosis, I didn’t know much at all about disease, and many people still don’t. This is one reason why I share so much about my experience with Lyme. Another other reason being that Lyme effects my daily life so much, it doesn’t take long in talking to me before it comes up one way or another – I’m a becoming a professional Debbie Downer in that respect. My personal tendency to drag down perfectly good conversations with dreary medical updates notwithstanding, Lyme Disease is an illness that could really benefit from some awareness raising. Why is that? Because it is largely preventable.

Did you know that children are the highest risk group for Lyme Disease infection? They are. Children, when educated about tick safety, are also excellent reminders to do tick checks! My son is like the Tick Police™ as soon as spring comes. Any time that we’ve been out at the park or playing in the grass, that evening as he gets ready for pajamas he’ll strip down and lift his arms in the air, announcing “TICK CHECK!”

When I noticed how keenly he took to this responsibility, and combined it with the knowledge of how high risk children are for Lyme, the answer seemed clear – start ’em young! Educate his peers, and turn them all into little Lyme-fighting Tick Police Officers! I had this light bulb moment in Spring 2015, and promptly starting putting together a presentation for his pre-K class about tick safety and Lyme prevention.20150325_113410

It went wonderfully! I brought in lime slices for the kids to take the Lyme Challenge, made poster boards to explain the basics of tick safety, and created handouts to be sent home to their parents with more detailed information.FB_IMG_1427315615537

This year, I approached my son’s kindergarten teacher about doing the same. She loved the idea, and I am happy to report that it was once again a success.IMG_20160520_154947

I am even happier to report the wonderful feedback I’ve received from other parents. Each of the times I gave this presentation, a part of me has worried that the kids would be scared. That my fellow parents would be rolling their eyes, saying, “Grrrrrrrreeeeeat, now my kid is scared of every ant and little bug s/he sees! Thanks a lot, Annoying Lyme Mom!!!” But parents in my son’s class reported back to me that their kids were excited to share “important” information with their parents. The parents thanked me for educating them, for pushing the bug spray, and empowering the kids with prevention tools they needed.

runkle flyer side 2

Click to enlarge

I understand that we all can suffer from awareness fatigue with so many various causes popping up in our social media these days, but it all starts from a good place. People who are touched by an illness or issue, wanting to help others understand what they are going through, or prevent going through it themselves.

Making lemonade.

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Limeade?

Limeaid?

Lymonade?

You get it.

Lyme Disease Awareness Month: Tick Safety!

May is Lyme Disease Awareness Month. As someone who knew next to nothing about Lyme Disease before my diagnosis, I have come understand all too well the importance of awareness about this potentially devastating, but PREVENTABLE disease. There is so much misinformation about Lyme Disease! Spreading awareness about the FACTS is essential to bring down the rate of infection of Lyme Disease, which is rapidly increasing. Knowledge is power – read on to protect yourself and your loved ones!

PREVENTION

Use a Good Repellent

Lyme Disease has been reported on every continent except Antarctica. Ticks can be found just about anywhere – dense wooded areas are NOT the only places that pose a risk. Ticks can be found in the grass at parks, on the beach, in your front yard, etc. Most people know about the danger of deer ticks, but ticks can also travel around on mice and other small animals that live in non-rural areas.

picaridin

CLICK to view 20% Picaridin repellent on Amazon

permethrin

CLICK to view Permethrin clothes spray on Amazon

 

 

 

 

 

 

 

 

 

 

If you are playing outdoors, hiking, picnicing, etc, use a bug repellent that will protect you from ticks. Bug repellents with Picaridin are more effective than DEET!  If you are really getting out in the wilderness – camping or hiking for example – treat clothes and fabric gear with Permethrin spray. These repellents are reasonably priced and available via Amazon (click photos for direct links), or at fishing/camping stores.

Check for Ticks

After outdoor activities, check for ticks! Check around the edges of clothing, between toes, behind ears, in any fold/crease, in private areas, and in hair.

It is a MYTH that a tick must be attached for 24 hours in order for Lyme Disease to be transmitted. Lyme can be transmitted in minutes, and the faster you remove the tick safely, the better you protect yourself.

Here’s a handy chart of several kinds of common ticks in the United States. The ones at the bottom are as small as a poppy seed. The top two rows show the ticks as they appear during/after a blood feed.

Click to enlarge!

Click to enlarge!

 

REMOVAL

Remove Ticks Safely

pro tick

CLICK to view Pro-Tick Remover on Amazon

tick ease

CLICK to view Tick Ease on Amazon

tick twister

CLICK to view Tick Twister tweezers on Amazon

 

 

 

 

 

 

 

 

If a tick bite occurs, remove it quickly and safely! The three tick removers above all have excellent reviews and allow you to remove even very small ticks effectively. Consider purchasing one if you live in a high-tick area, do a lot of outdoor activities, have children who play outdoors, or have a pet that spends time outdoors. All of these cost between $5-$15 (a small price to pay for peace of mind!!), and are available on Amazon (click images to purchase). The Pro-Tick remover is even small enough to put on your keys or in a wallet, which is pretty cool!

It is NOT recommended to twist, crush, burn, or put any kind of lotion on the tick. Just grasp it as close to the head as possible with fine tweezers and pull firmly. ***The “Tick Twister” above recommends twisting to remove a tick. The tweezers will work without twisting, and that is preferable!!***

TESTING & TREATMENT

Get Yourself Tested & Treated

If a tick bite occurs, after removing the tick safely, the next step is to SAVE IT (see below), and contact your doctor for a Lyme Disease test. Ask your doctor for a Western Blot Lyme Disease test. Typically, the ELISA test is run first, but it is NOT RELIABLE. False negatives of the ELISA test are VERY COMMON. Insist on a Western Blot test if necessary. Many doctors will prescribe antibiotics before the test results come back. This is the safest way to go, as speedy treatment is the best way to combat Lyme Disease and prevent persistent or chronic infection.

If your Western Blot is negative, ask for a copy of it. Some tests are considered “negative” even though they are partially positive, and if this is the case with your test, you may want to consider treatment.

If you see a bulls-eye or halo type rash, ASSUME LYME INFECTION. Even if you have a negative ELISA and/or Western Blot test, assume that a bulls-eye or halo rash means you have been infected. The rash may appear minutes after a bite, days, or weeks. If you see a rash, take a photo to document it. Get to a doctor and DEMAND antibiotics. I am not kidding!! If a doctor refuses you antibiotics in the face of a bulls-eye or halo rash SEE ANOTHER DOCTOR. Head to an urgent care or ER if need be. The BEST way to prevent late-stage/persistent/chronic Lyme Disease is to be treated AS SOON AS POSSIBLE. Lyme Disease DOES NOT go away on its own, and the longer it takes for you to be treated, the more likely you are to have long-lasting complications related to the disease.

Know that the absence of a rash does NOT NECESSARILY MEAN the absence of an infection. Many Lyme Disease patients do not recall ever seeing a rash.

Get the Tick Tested

Lyme Disease testing of ticks is FAR MORE ACCURATE than Lyme Disease testing of humans, so it is a terrific way to find out if a bite has put you at risk for Lyme Disease. Save the tick in a ziploc bag with a moistened piece of paper towel. Even if the tick is broken or damaged, it can still be tested. Look up the phone number on your state’s government website for the Health Department. Some states offer FREE tick testing, and you will be not only gaining your own peace of mind, but also aiding your state in collecting data about local Lyme-infected tick rates. If tick testing is not available through your local health department, you can have your tick tested for $50 through Tick Report, a non-profit tick testing organization through the University of Massachusetts Amherst.

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I hope you have found this information helpful! Feel free to share! Knowledge is power!!

For more information about Lyme Disease and tick safety, or to find a Lyme literate physician in your area, visit ILADS.org

 

P-p-p-pulse it

I’ve been back on antibiotics for about two months now. I started out with daily rifampin and azithromycin. A month ago, due to an interaction issue, we switched out the zith for minocycline. My doctor conferred with the lead doctor at the practice about my case and decided that if I felt ready to, I should switch to pulsing both the rifampin and minocycline. They recommended taking both antibiotics for two weeks, then take a break for a week, then repeat. I have mentioned here before that research has shown pulsing antibiotics to be very helpful in treating Lyme. Part of the reason Lyme Disease is so difficult to eradicate is its ability to linger in dormant persister cells. By pulsing antibiotics, you sort of trick the persister cells into thinking the antibiotics are gone, so they “wake up” or  reactivate, and just as they do, BAM – more antibiotics! It makes good sense, has done well in lab tests, and anecdotally, has helped many patients.

In theory, my doctor also sees it as a way to continue my treatment while giving me some “breaks.” In practice, it sounds to me like a herxheimer rollercoaster on a loop, as each time I resume antibiotics, I can expect a flare in symptoms to follow.

In addition to the antibiotic pulsing schedule, I am doing biweekly IV therapy, with just a couple of key ingredients to keep cost down. One of those is glutathione, which is sometimes used in treating diabetes and Parkinson’s, and also to help lessen the negative side effects of chemotherapy. Less items in the IV means not only less cost, but less time in the chair. My old IVs took a good two hours or so to drip, this one takes about 45mins to an hour.

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IV, blood work, cat nap – the recliners are pretty sweet

Regular blood tests to monitor my progress and keep an eye on things like kidney, liver, and adrenal function (all of which could be impacted by Lyme and/or antibiotic use), continue to be important.

Also continuing are the necessary supplements and vitamins to help strengthen my immune system and lessen some of my bothersome symptoms. I am also taking an enzyme that functions as a biofilm buster – biofilm being the protective coating that can keep antibiotics from getting to Lyme bacteria. This enzyme needs to be taken away from food. Probiotics need to be taken away from antibiotics. Another immune boosting supplement needs to be taken first thing in the morning. All this is to say that I am now (again) on a schedule of taking pills of one sort or another at 6 different times of day. Over the last several months, I was able to pare down to 4 times per day which was much simpler, but this current protocol just has too many can’t-take-that-with-this restrictions, so I dusted off my FOURTH pill sorter and am back to six times per day.

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Here’s a photo from March 2015 when I first went to a 6 times daily schedule. I had since retired one of the blue/yellow containers, but it’s now back in action!

This past week was my first “off” in the pulsing schedule. It was nice to have a few less pills to take, and was a bit easier on my stomach. I also felt somewhat better overall than I have the past few months. I had one very good day, and the rest were in the realm of okay, with many symptoms not bothering me too much until the evenings, which always tend to tough.

So with one “off” week under my belt, it’s time to go back on the antibiotics. I’m mentally bracing myself for a rough week of herxheimer reactions, but hoping for the best!

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Down the hatch!

PSA: Tick Testing

One of the scariest things about Lyme Disease is the uncertainty. We don’t know which ticks are carrying Lyme. We don’t know how long a tick needs to be attached to risk infection. We don’t have very accurate tests to diagnose Lyme Disease.

I want to share some information today to help alleviate a small portion of the mystery for some people. If you are unfortunate enough to get bit by a tick, but fortunate enough to see the tick and have the chance to save it, you can get that tick tested to see if it is carrying Lyme. The test costs $50.tickreportdotcom

The University of Massachusetts Amherst offers tick testing through tickreport.com. Detailed instructions for submission can be found here. They ask that ticks be submitted in a plastic ziplock bag, with a piece of moist paper towel. They will take a tick in almost any condition, and will refund your money if the tick sample is found to be unsuitable for testing (which they say is very rare).

Of course, you’ll want to get yourself tested for Lyme in the event of a tick bite as well. But it is worth noting that UMASS has found their testing to be 99.9% accurate, while the Lyme tests we have for humans (which work in a different way) are nowhere near as fool-proof, and produce numerous false negatives. While you’re talking to your doctor, mention that you have the tick and see if testing is available through their lab – some towns (especially in areas where Lyme is prevalent) offer free tick testing for their residents, and you might not find out unless you ask!

So today’s Lyme Lesson is: If You Get Bit – Save The Tick

Peeling back the layers

It is often said that treating Lyme is like peeling the layers of an onion. Because Lyme effects multiple body systems, and Lyme bacteria changes form throughout treatment, recovery can feel like a roller coaster. The herxheimer reactions as bacteria are killed, releasing toxins that make you feel worse, happen again and again with each “layer” of treatment. Throughout treatment, medications need to be switched up because over time, the different forms of bacteria can hide from or adapt to antibiotics. I write this on a foggy day, so I hope I am making sense.

lyme forms

What all of this means is that it is hard to know how I will feel day to day, week to week. My most problematic symptoms rotate. For examle, earlier in my illness, lower back pain was daily. Now, it is rare. For a while, my short-term memory was horrible. It got better for a time, and now when I have bad days it is poor again. My drooping right eye, ear, and shoulder, and accompanying arm and leg pain seemed to be improving for a while, and now they are acting up again.

I experienced my last big herx a couple of weeks after a change in medication protocol. Now again, things have started to change. Several days ago, I started to go downhill, and it was, like clockwork, a couple of weeks after a protocol change.

Experiencing a resurgence or intensifying of symptoms is frustrating, and can feel like going backwards, but is actually progress. It means something is happening. I like to imagine that some of my neurological symptoms flaring means nasty Lyme bacteria in my brain are being attacked – it hurts now, but hopefully that means good days that are even better than previous good days are ahead.

Layer by layer, on the road to better.

 

What a difference a herx makes

Lyme bacteria are squiggly little bastards called spirochetes. When medicine starts working, causing spirochetes to die, they release toxins. These toxins can make the patient feel pretty terrible, which is called a Herxheimer Reaction, or herx for short. At my first appointment with my Lyme doc, she said, “Have you heard of herxing in your research? Okay, good. It’s real.”

During the first month of my treatment, I had moments where I thought, Hmm… Is this a herx? Maybe this is a herx?  Well, I’m here to tell you today, I NOW KNOW WHAT A HERX IS.

Exhibit A:herx

It was a tough weekend, folks. I could barely leave my bed. On Sunday morning, the headache was so horrendous, it was hard to form words, or get my body to move where it wanted to go. I thought about posting here to document my miserable state, but even opening the laptop seemed too arduous. Just for added fun, my wife came down with a cold, and my son got pink eye! Two sick moms wrestling a preschooler like an alligator in order to administer eye drops (which we luckily had on hand a from a recent pink eye false alarm), was a sad, sad sight to behold. A weekend to remember!

Monday brought some improvement. The morning was a challenge, but by the time I made it to my music class, I was able to teach and feel pretty good doing it. I was definitely tired for the rest of the day, but the headache was back to my usual moderate level, and I no longer felt like I might die at any moment.

Which brings us to today, Tuesday. It felt like kismet that the sun was shining and temperature rising because I felt…good! Sure, I’ve had a mild to moderate headache all day, and I needed a cat nap between teaching class and picking up the kiddo from school, but I felt Pretty Good for the whole day!

Exhibit B:

post herx

Look at me! Wearing jewelry and smiling! Hooray!

The road to recovery from Lyme is paved with many a herx. As spirochetes die off, the toxins they release build up and bring the hurt. You get through it, and on the other side, you can feel pretty darn good. This is a process I will likely repeat over and over as I continue treatment. Having this experience feels like a Lymie milestone, and in this moment, it gives me hope about moving forward.

My Story: Part 1 – Diagnosis

I don’t know when I was infected with Lyme Disease. Based on my journey thus far, it would seem that I haven’t had it, say, since I was 2 years old (I would be in much worse shape), but in all likelihood, I did not just get bit 6 months ago (because of how sick I am, and how I have responded to treatment).  Looking back over my history, there are some clues that could mean that I already had Lyme when I was X years old, or Y years old; or those could just be coincidences – Lyme is the “Great Imitator,” after all. There’s no sure fire way to know.

The start of my Lyme For Sure story is a fever in September 2014. I had been very busy working as a doula all summer. We had sold our house under distress (scary neighbor situation) and were moving. My son had broken his leg. Things were very stressful. Then I got a fever that would not go away.

I stayed around 104°F for 5 days straight. My head was pounding, my neck was stiff, I had no appetite, and I was completely exhausted. After several days, I went to the doctor, who told me it was a bad viral infection. A week later, I was still sick, and a new symptom had appeared – large red and purple welts on my legs which were growing, multiplying, and spreading. They didn’t itch or really hurt, but they sure did scare the hell out of me. Back to the doctor I went, where a Lyme test was administered “just in case,” (even though the welts did not look like the signature bullseye) because some of my other symptoms could be Lyme, and this is Massachusetts – one of the top states for Lyme. I was told the welts were probably just erythema nodosom, which is basically a weird presentation of a virus, given a z-pack for what was probably a bad sinus infection (the head/neck pain) and sent on my way.

The z-pack helped a bit, but not much. About a week later I got a phone call that the Lyme Tests, ELISA & Western Blot, were positive. My primary care doctor prescribed me the routine course of antibiotics.

What I know now is that my positive Lyme Test is nearly akin to a Golden Ticket. The ELISA & Western Blot tests produce numerous false negatives. ELISA misses 35% of proven Lyme cultures. Some studies indicate that up to 50% of Lyme patients have received false negative test results. The average Lyme patient sees 5 doctors over 2 years before getting a diagnosis. So to be able to answer the question of “What is wrong with me?” within less than a month of being debilitated, was incredibly fortunate.

So very many patients are not so fortunate and suffer for years in terrible health, without answers. Chronic Lyme symptoms can lead to false diagnoses of Fibromyalgia, Chronic Fatigue Syndrome, MS, and ALS, just to name a few.

This is why more research and attention for Lyme Disease is so important. Estimates put the rate of infection in United States alone between 300,000 yearly on the low end, and 1,000,000 yearly on the high end.And we don’t even have an accurate test for diagnosis!

I began my course of antibiotics with an open mind. I did some research about Lyme Disease, but was pretty overwhelmed by what I found, so I stepped away from Google, and hoped for the best. “Hopefully I’ll be one of the ones who just gets better,” I thought to myself.

Up Next: Part 2 – Something Is Wrong

(reference source: www.ilads.org)