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 2 – Something is Wrong

I started my antibiotics with an open mind. I told people in my life I should be just fine in a few weeks. As days passed, I felt no improvement. The headaches were unbearable. The pain was very intense, and just for reference regarding my pain tolerance – I gave birth to a nearly 9lb baby without drugs, and would willingly do it again. It was hard to lift my head, keep my eyes open, and communicate. My brain felt very foggy, and simple tasks felt very mentally taxing.

With the severe headaches and worrisome neurological symptoms, I asked my primary care doctor about having my brain checked out. She conferred with the Infectious Disease doctor in the practice, who said that my persistent severe headaches, sudden brain fog and forgetfulness were not enough cause to suspect neurological Lyme, and that I should be fine with the routine antibiotics. No seal of approval from the ID doc meant no insurance coverage for an MRI. My doctor, being empathetic and resourceful, decided that I could and should have the MRI – she would simply omit “Lyme” from the reason for the order. Instead citing the persistent, severe headache, which at that point, had lasted a month. My MRI came back clear.

I started going to acupuncture at this time, again, with an open mind, not having any prior experience with it, but figuring it couldn’t hurt. My acupuncturist had treated many patients with Lyme and so was very familiar with what I was going through. The weekly acupuncture seemed to help a bit with the headache and the anxiety that I was feeling about the whole situation.

At the end of the 3 week course of doxycycline, I had very little improvement. I was still completely unable to go about my daily business. My primary care doctor conferred again with the Infectious Disease specialist, who said that it is normal for patients to not yet feel better at the end of the antibiotics protocol, and that I should just wait, and come back if I did not feel better in a month. To underline this point – I had been sick for over a month, and was told to just hang around and be sick for another month before I warranted additional care. Now, I had read in my own research that some patients don’t feel better until some time after the antibiotics were done, so I decided to again, keep an open mind, and hope for the best.

I continued weekly acupuncture, rest, and vitamins. I felt a little better, but still not well. If I rested for 2-3 whole days, I could feel “okay” for almost 1 whole day. Sometimes I could rally and be active for a whole day, but I would always pay the price, with more head pain, aching body, and foggy brain.

December came, and I started to feel a little better still. I got excited and thought, “This is it! It worked! I’m better!” I went about at full speed, holiday shopping and trying to catch up on some tasks I had let slide since getting sick in September. I made it through on adrenaline and hope for about 5 days, and then I CRASHED. I was not better. I was right back where I’d been for nearly 3 months.

At this point, I started to realize that I was not one of “the people who just get better.” This was hard for me to process. I had seen a lot of scary stuff in my internet research. I saw the stories of so many people who were so, so sick and couldn’t get better. I read about LLMDs (Lyme Literate Medical Doctors), and how they were hard to find, and sometimes impossible to afford. I read about the schism in the medical community – those who believe that Lyme Disease can and often does become chronic, and those who completely deny that to be true.

I decided I would try out the Infectious Disease doctor, even though he had not yet been very helpful. After all, he did say to call in a month if I wasn’t better. So I called. They gave me an appointment…for February. So I was to hang around and be sick for another month…again.

Up Next: Part 3 – The Cost of Getting Well

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)

Why a Lyme Challenge?

I’m not big on internet bandwagons. I really don’t care for anything that includes tagging other people to call them out, or request their participation in something. But, when there is an opportunity to raise awareness about an illness that is misunderstood, and to raise money for much needed research that could change people’s lives, I’m in.

The #LymeDiseaseChallenge seeks to raise awareness about Lyme Disease and raise funds for research. Lyme Disease occurs annually at a rate of 141 times that of West Nile virus, yet Lyme Disease receives less than half of the funding for research that West Nile does. Lyme Disease occurs at 6 times the annual rate of HIV/AIDS. The CDC estimates that there are 300,000 new cases of Lyme Disease each year in the United States, 10 times more Americans than previously reported. Some experts believe the actual number of new cases could be as high as 1-2 million new cases per year in the US alone.

Thousands upon thousands of patients with Lyme are struggling to get better. If not diagnosed and treated immediately after infection, Lyme can cause health problems that take months or years to treat. So many people are just not getting better. What is needed is RESEARCH. We need to find out how better to identify Lyme disease and how best to treat it.

Please join me in the #TakeABiteOutOfLyme challenge and making a donation to ILADS (International Lyme and Associated Diseases Society) via www.lymediseasechallenge.org

Spread the word!

Ups and Downs

For those of us who have Lyme for an unknown amount of time before it is diagnosed, treatment is a long and winding road. Lyme is great at self preservation, and it fights back. It can adapt to treatments, stalling progress. It releases toxicity as it dies, causing the patient a worsening of symptoms. It can take a long time to kick, and kick the hell out of you along the way.

This week, I did some amazing things. On Friday, I completed several loads of laundry, and survived a record-breaking public meltdown by my nearly five year old. On Saturday, I changed bed linens, vacuumed, tidied, and atteneded a birthday dinner for a friend. On Sunday, I went to a family event that was over an hour’s drive away. None of these tasks sound very impressive on their own, but the fact that I was able to accomplish them all in just three days is remarkable. I was tired at times of course, but I did it.

And then I crashed.

Monday morning was a rude awakening. I had music class to teach, which I got through on a combination of sheer force of will, the oxytocin released by singing, and the fact that those kids are so darn cute. By the time class was over, I barely had the energy to drive the 5 miles home.

I took the opportunity to nap while my son was still at school, and the rest of the day has been spent in grip of the worst headache I’ve had in weeks. As the hours pass, the pain intensifies. It feels like my head might burst open.

Is this because I did too much this week? Is this a herx from my new protocol? Both? Hard to say.

All I can do now is go to bed early and hope tomorrow is better.

Next Steps

Last week, I headed back to the doctor to check in, get test results, and look ahead.

My blood tests confirmed that yes, indeed, I have Lyme For Real and am Very Sick. However, they also confirmed that I am nowhere near as sick as I could be. That is an incredible relief. There were some interesting findings that I’ll need to look into further, but a good number of scary things were crossed off the list of concerns, at least for the time being, and that feels great! Little victory – gratefully accepted.

She was pleased to hear the progress that I’ve made, and said that as things look now, I will likely be able to get well without intravenous antibiotics. Hearing that felt a bit like being given a puppy – a really, really cute one. Based on all of my research about Lyme, I have known that with neurological symptoms, there was a really good chance I was headed towards a PICC line or similar intravenous set up. If I don’t continue to get better, it could still end up being necessary, but as of today, I have made progress, and it looks as though my case may not be bad enough to demand it. Little victory – gratefully accepted.

Something I was very surprised to hear is that I tested negative for ALL co-infections. I hardly thought that was possible! It is wonderful to think I am only fighting one “bug” and not many. However, like so many things about Lyme, there are more questions than answers when it comes to co-infection tests. They are not 100%. So, for example, if in two months my progress has stalled or back tracked, we might be faced with trying to figure out a co-infection that’s lurking within, but not showing up on tests. That happens frequently to Lyme patients, and so I don’t have an official, laminated Get Out of Co-Infections Free card just yet. For the time being, though, co-infections test is negative. Little victory – gratefully accepted.

The overall impression is that if things go well, I could be Better in a few months, which is very good news indeed.

Much more was discussed and reviewed, but those are the highlights. So what’s next? This:

$200 worth of shiny new pills! These are a combination of Lyme killer (one to attack another of the layers of Lyme, called biofilm), probiotics, and supplements. Plus one insurance-covered Rx, and another plain old vitamin.

A scene from my thrilling post-follow-up organizational session:

So many pills…such little compartments in pill sorters! Already, at my previous 31 pills per day, I was exceeding the limits of the two pill sorters I owned. Breaking through the 40 per day mark called for stepping up my sick girl accessory game. Voila:

A new protocol, a new schedule, a new storage system! Now I have every single pill sorted into its very own container for the 6 different times each day that I take something. This makes it easy to not only pop them quickly and mindlessly, but I can also easily see if there was anything that I missed.

More blood tests in another month, with a follow up shortly after. Until then, just keep plugging along.

Right Side Wrong

Lyme is often an invisible illness. Walking down the aisle at Target, I look like any other (tired) young mom buying toilet paper. Sometimes, when I’m out with my family, I look wistfully at the courtesy wheelchairs offered in many public places, wanting to rest so much, but feeling like I’d appear a fraud if I used one.

If you look closely though, there are a couple of visible signs. First are the dark lines under my eyes. Sometimes they are partially masked by layers of concealer and highlighter, but even that often fails me.

The other is what I refer to as, the right side of my body falling off. That is not really what’s happening, but I find comedic hyperbole comforting. My right eyebrow, eye, side of mouth, ear, and shoulder are all lower than my left. I’m not sure exactly when this started to happen, but that is also the side of my body with the headache, and “drooping” facial features are a common neurological symptom, so it all makes sense. I have also experienced tingling to the point of pain in my right limbs, but of course, no one can see that.

image

I can’t ignore this physical change because it is literally looking back at me in the mirror every day. It makes me worry about my brain. Still, I am fortunate. Patients with late stage neurological Lyme can lose speech and have limbs go completely numb.

Lyme can make life topsy-turvy. Having a crooked face can be categorized as “fortunate.” And my definition of good days vs bad days is ever evolving.

About a month into my treatment, I have had a lot of bad days. Days when simply getting out of bed is like climbing a mountain. I have also (this week!) had some good days. On a good day, there is still pain – just less. On a good day I am still tired – but maybe have adequate energy for half of the day. On a good day I can potentially eke out 50% of what I used to be able to do in a day – but man, does that 50% feel good.

Test results coming soon. Next steps will follow.