Living with Lyme – Jealous of cancer?!

An acquaintance of mine got sick right around the same time last year that I fell really ill. Cancer. We were both previously very healthy, active and social creatures. Our illnesses arrived suddenly and dropped us each to our knees. But that’s about where the shared experience stops.

You see, he had a swift diagnosis, a clear treatment plan, solid insurance coverage and loads and loads of vocal support.

It’s terrible to say, but I’m jealous of my friend who had cancer. I don’t want to compare the two illnesses at all. No one can know the terror of a specific illness without experiencing it first hand and I don’t at all claim to understand the horrors of battling cancer. But the vastly differing experiences we’ve each had in our searches to get well has been noticeable.

People know what cancer is. Doctors recognize it. Friends understand its devastation. People know what it means to begin chemotherapy. Patients appear to be granted support, understanding and grace.

When I tell people I have late stage Lyme disease, all I see is confusion. Doctors told me for nearly a year that I was “just stressed” or that I had a psychiatric condition before I was properly diagnosed. (Seriously, when’s the last time a psychiatric condition caused you to lose your hearing, your vision and your muscles to all go rigid??) I’ve been granted support from a precious close few, for sure, and I’m eternally grateful for those who’ve been brave enough to weather this with me. But mostly I’ve been received with silence and absence of anyone who I’d formerly considered a friend. I doubt anyone would’ve been upset at me for missing a birthday party if I were fighting cancer. Where’s the grace for folks dealing with very serious illnesses like Lyme?

My friend who had cancer, he’s won his battle already. His treatment was over before I was even diagnosed. He’s climbing a mountain this summer to raise awareness and funding for cancer. As a girl who’s still just as sick as we both were in the beginning, and only just starting a very long, difficult, lonely and expensive road of treatment, I can’t help it.

I’m jealous of my friend who had cancer.

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Die Spirochetes, Die!

IMG_1132Well, the day is here! It’s time to start treatment. SQUEEE! To say I am filled with mixed emotions doesn’t even begin to cover it. The truth is, I’m filled with all the emotions.

I am, of course, excited by the prospect of potentially getting better. The news that this is Lyme disease, that this can be treated and that indeed treatment is now here at my finger tips is a life changing development. My symptoms change every day, but at this point there’s a long list of them that gets me down. To think that some of those things could start to ease… that I could see clearly enough to read street signs or recognize faces, that I could enjoy a silent meditation without this constant ringing in my ears, that I could bend over to clip on my dog’s leash without having to use a banister to lift myself upright again, to think that perhaps I could walk up a flight of stairs without getting winded… these prospects are almost too wonderful for me to even dream of. If this is a step toward that life, it’s worth every ounce of effort.

Of course, I’m downright terrified of the number of pills I’m about to introduce to my system. I’m very worried I’ll temporarily get worse (a common experience that results from bacteria die off). I’m scared this won’t work at all, and that my hope will be crushed. I’m even still slightly skeptical of this whole darn Lyme world that I’m only just now learnings about. It’s a lot. I’m definitely in “put one foot in front of the other” mode. And this is an important step.

For treatment, I’ve opted for a “traditional” path (if there even is such a thing) that includes:

  1. “Chemotherapy level” antibiotics to kill Lyme bacteria; the exact mixture will change and rotate over time to prevent the bacteria adapting to it
  2. Probiotics to support my gut so I can withstand the treatment and nutritional supplements to support my immune system
  3. An alkaline, low-glycemic diet (so many greens!) to slow down the bacteria’s replication
  4. Detox detox detox to move the dead / dying bacteria out of my system as fast as possible

Day to day, this means a lot of pills, a lot of slightly less than appetizing meals, drinking my body weight in water, maintaining a strict routine around daily detox baths and getting lots of good rest. In short, just taking really really good care of myself.

06.30.15 Lyme Treatment Starts

It all starts tonight. The pills are sorted, the fridge is stocked with greens, the bath goodies are waiting and my boyfriend has kindly volunteered to be on hand should I need help weathering any herx reactions. Ready or not, it’s time.

Let’s kill some spirochetes!!

Battle-Ready Haircut

I’ve never had long hair as an adult, so it’s a cruel irony that I got sick and started losing my hair after 3 years of growing it out. Last fall, when everything started falling apart, I was at an all-time length record:

K 1 - Long Hair

I’m not sure why it started falling out. Maybe Lyme disease itself is causing this. In retrospect, the same thing happened in 2005 when I had my first “MS attack”, which I now understand to be a neurological Lyme flare. Or it could be that the Lyme disease has impacted my thyroid function, as I’m very borderline hypothyroid and testing positive for Hashimoto’s and Grave’s disease. I may never know. But seeing my beautiful long hair shed in such high volume, and the development of thin patches that were bad enough that I hesitated to pull my hair back broke my heart.  So after it worsened over several months, I cut it all off!

K 2 - Short Hair

This short shag was better, for sure. But the shed was still super noticeable. And the thinning patches by my forehead were actually a little more visible at this length. So I went even shorter!

K 3 - Super Short Hair

Now this, I liked. I barely noticed the shedding and my thin patches were nicely disguised and I thought for sure I could hang here for the duration if needed. Only….. hair this short takes a lot of upkeep. $50 haircuts every 4 weeks, in fact. And as soon as I paid my first treatment fees (nearly $1200 out of pocket for a 30 day supply), I realized that that expense just wasn’t in the cards anymore. So when I came due for another trim, I did a DIY job!

K 4 - Bald

So here I am: Stripped bare and with complete acceptance of where I am health wise and financially. I’ll admit there’s definitely a bit of loss here. I’d felt beautiful with that long hair in a way that, as a usually short haired gal, I don’t often get to feel. At least, it felt beautiful until I got sick. Once it started falling out, that beauty felt like a lie. People would compliment me on it and I felt disingenuous. I’d hide my thinning patches, I’d strategically color it, I’d swiftly stash hands full of shed hair after running my fingers in it so no one would see. I don’t know. Living with invisible illness sucks. Nobody can see how sick I am, how much pain I have, how hard everyday life has become for me.  The short hair feels like at least one truth. Even if it’s not quite as traditionally beautiful as the long hair was, it’s a look I’ve liked even in my healthier days, and one I still like now. Shaving it this time felt empowering, strengthening and like I was getting ready for battle. And anything that makes this weaker-than-usual gal feel strong, I’ll happily take.

Onward.

Pre-Treatment Jitters

I’m just about ready. I’ve collected all the medications, probiotics, nutritional supplements and detox aids I need to begin treatment. Before I start, I need to get some blood work and a visual fields test so that we have “pre-treatment” baselines to monitor any bad effects from the drugs. I also need to finish up an unrelated course of antibiotics I was on for a suspected sinus infection. I hope to have that all wrapped up this week. I’m almost ready to do this.

meds

Here’s Bentley helping me sort just the probiotics and detox bath supplies. During this first month, I expect to be taking pills 5x per day, which is actually less than I expected. We’re starting slow. But we’re packing a punch. I’ll be taking:

  • 1 very strong antibiotic
  • Cat’s Claw
  • 2 cyst busters
  • 1 anti-fungal
  • 3 types of probiotics
  • 2 immune supportive supplements (vitamin D and omegas)
  • 2 anti-inflammatory supplements

And, of course, all the regular human and symptom management medications I was on before, including importantly my thyroid medication and (for now) my multiple sclerosis medications. Whew! Long list. And this is just the start.

I’ll admit, I’m very nervous about starting treatment. Namely, about herx reactions, which if you trust YouTube videos can be really really scary. (Seriously, why did I look that up?!) BUT thanks to 2 very awesome friends who contributed to my funding, I was able to recoup enough of my out of pocket costs to purchase some detoxing help in the form of burbur detox drops, Alka-Seltzer Gold and Quercitin tablets that will help me over the hump of any herxing. Huge thanks to Lori and Leslie for their support, I wouldn’t have been able to do that without you. I feel more confident popping these first sets of pills knowing I have everything I need to cope right here on hand.

Overall, I’m keeping a positive and optimistic attitude about this. I’ve decided I’m the perfect candidate for Lyme disease recovery. Killing these bugs requires, above all else, diligence. Managing a rigorous pill schedule, an exceptionally clean diet of foods that are alkaline, non inflammatory and low glycemic, and detoxing every day makes for an intimidating “to do” list. But if there was ever anyone cut out for a process-oriented battle, it’s ME.

Onward.

Panic Attacks and Lyme Disease

I love this article so much. It describes perfectly my experience during months leading up to my diagnosis. I’m grateful for my profound sense of trust in myself. I always believed there was a physical cause for all that was going wrong. But I admit, even I occasionally wondered whether I ought to consider that I was simply going crazy, exaggerating or simply focusing too much on my health. Then something bizarre would happen – like my mouth suddenly going numb and my arm weak for no reason at all – that would remind me, “nope, something is definitely wrong here”.

Unfortunately, my faith didn’t dissuade others from telling me I was “just stressed” or “overly anxious”. Even some of my closest friends and especially my doctors failed to believe the seriousness of what was happening to me. I felt unable to talk truthfully about my experience, finding it easier just to keep quiet than be deemed crazy. I stayed home a lot, even on days I felt relatively pretty ok physically, because it felt better to BE alone than to be surrounded by people who didn’t get me anymore. What a sad reality.

This is a good read for ANYONE with Lyme disease, and an even better read for their loved ones. I’m going to share with my therapist and Facebook network, hoping more people understand a bit what this road is really like. And that I am not, in fact, just a hyper-vigilant hypochondriac.

Copying the whole article in here, because it’s just that good.

Panic Attacks AND Lyme Disease

March 1, 1999 in Lifestyle by Dr. Virginia Sherr, MD

People in panic are no strangers to my psychiatric office. For 42 years, I have helped people cope with intense feelings of fear: People gripped by the terror of a racing heart, feelings of impending doom, a sweaty brow, and no discernible contributing physical illness. Many of these patients have developed a fear of the fear itself, and a panic attack occurs whenever they are reminded of their previous terrifying attacks.

More and more lately, I am seeing the same symptoms in adult people, young and old, who demonstrate an important additional factor. Although they have been examined by one medical specialist after another, there never really have been any good medical explanations for a host of other odd or even commonplace physical problems they have. For example, some of these problems have shown up in a local physical education teacher. He experienced a sense of disorganization, surges of heat and/or chills, on/off rashes, extreme muscle pains, spells of utter fatigue, a pounding of the heart on slight exertion, ringing of the ears, blurring of vision, bizarre neurological pains, transient joint pains which sometimes included a swollen joint, TMJ, forgetfulness, exquisite sensitivity to sound, to touch, or to medications, restless leg syndrome – especially at bedtime, dramatic weight changes, muscle weakness, sleep attacks, and muscle twitching, especially one eyelid and a finger.

Other people notice that they have an area of numbness, for example, of the hands. They may complain that they can no longer play the piano well because their hands feel heavy and they are clumsy. Some have severe neurologic pains which often mimic sciatica and other problems. There is usually a history of repeated serious attacks of sinusitis, bronchitis, migraine-like headaches, sleep attacks, and/or pneumonia.

A sub-group of these panicky people have problems which appear to be largely gastrointestinal. Stomach pains, nausea, or even Crohn’s disease rule their lives. Nearly every one of unsuspected Lyme sufferers comes to me believing their symptoms are the result of stress, hypochondriasis, or personal weakness. Generally, they are bewildered by the devastating power of their panic episodes to bring them to their knees. They also are bewildered and angered by the attitude of their physicians, who seem to feel helpless to understand the meaning of the symptoms once the usual lab tests come back negative.

In addition, many of these folks are sullen, irritable, and feisty. At the smallest provocation, they can go on a verbal attack. At times, they lash out with a stream of unedited hostility which comes straight from their subconscious minds. They justify this at the time, but sometime later it may seem to them, as it seems to others, like an extraordinarily strange over-reaction. Their startled companions may make a quick exit. Friends begin to distance themselves as these emotional outbursts become daunting. The patient becomes emotionally more isolated, depressed, and frightened. The sense of alarm intensifies, and they live in dread of their misery, their helplessness to control this or their panic spells. Sometimes suicide seems like a positive option to them. Not a few take to street drugs or alcohol or both in an effort to self-medicate. Many feel forced to stay in the safety of their homes, lose their jobs, and their relationships.

There are many Lyme disease cognitive symptoms that cause rushes of panicky feelings. The most typical is what I call “Lyme urgency.” This is a psychological feeling which is related to a need to drive oneself to attend to tasks, combined with a feeling of concern if one doesn’t act on every task at the moment that one thinks about it. What results is less overt panic at the time and more chaos in the long run. The distraction that one experiences from this compulsion leads to unfinished tasks and then exhaustion as one works longer and later to fix the chaos from all the interruptions. This, in turn, connects the panic to depression in many people.

Other symptoms of tick-borne diseases are so scary that the resulting panicky feelings are even easier to understand: sudden severe pain, unexplained sudden drops in blood pressure, memory loss, a sense of going crazy, sudden sleep attacks while driving, etc., the sure sense that something is terribly wrong despite the fact that everyone is reassuring you that “your laboratory numbers are good” and “you look good.” These are examples of what I refer to as a “normal sense of panic.” The lack of being believed by others whom one ordinarily could trust leads to a sense of abandonment and fear.

With the exception of a rare few souls, the vast majority of such panic sufferers are greatly relieved to learn that they are not crazy – something which is universally feared by panicky people. Sobered by the knowledge of infection, they are yet delighted to know that the cause of much of this is tick-borne disease, such as Lyme disease, and that the infections are treatable. The diagnosis is made clinically. Usually, but not always, it is verified by blood and urine testing via a sensitive laboratory. I personally recommend IGeneX Reference Laboratory of Palo Alto, CA.

It is difficult to eradicate disseminated tick diseases. But, for example, the use of the proper oral macrolide antibiotic treatment in high, but appropriate, doses for the duration of the physical symptoms affords some real relief from the panicky feelings. Until that stabilization occurs, however, anti-anxiety medication or antidepressant drugs or both can be used to provide freedom from this paralyzing dread. Sometimes treatment even has to continue beyond the antibiotics’ duration.

The diagnosis of Lyme disease or other tick-carrier disease in the panic-ridden person means that the patient has a multisystem infection. The causative germ’s effect causes a strong feeling in the patient that something is terribly wrong. If it is Lyme or another tick-carried disease, they have been right all along.

The big news: A new fight

There are periods of your life that change you. Challenges and circumstances you face that alter your story forever. Experiences that shape who you are. This is one of mine.

Most of my friends know, I’ve become really sick in the last year. Well, what they probably know best is that I’ve gone missing. They don’t see me much anymore, and when they do, it’s clear I’m not the same. I have trouble in crowds or stimulating venues, I’m not drinking or eating like I used to, I may have trouble keeping up with the activity or even the interaction… I look tired, pained and older than I should. I’ve been in the thick of it for a while now. And when the kinder hearted folks ask what’s gone wrong, I’ve only been able to shrug and admit sheepishly, “we don’t know.”

Until now.

Last month, I tested positive for late-stage Lyme disease. A diagnosis that was confirmed yesterday by a Lyme literate physician. An insect-borne bacterial infection that can devastate any system in the body as it pleases, this is a huge upset in the storyline of my life. And an important and exciting discovery in my fight to get well again.

Why a huge upset you say? Well it changes a lot about what I thought I knew. I thought I got sick in October of 2014, but it turns out this oft-underestimated bug is likely behind many of the illnesses and health issues I’ve had over the last 20 years. Asthma at 11, migraines at 12, arthritis at 13, extensive dental troubles at 14, carpal tunnel in my late teens, major knee surgery at 20, and even probably the multiple sclerosis I was diagnosed with at age 21, and of course the myriad of issues I’ve had the last 10 months. This has been missed for over twenty years while the bacteria has been left to replicate in my system every 28 days.

The infection at this stage is very advanced, impacting the function of my muscles, my joints, my eyes, my ears, my heart, my lungs and my mind. It will be a very difficult fight to regain my health. But!! I believe that I am finally fighting the right thing. And I’m ready to fight like hell.

Why did it take so long to get the right answer? Well, my friends, I am sad to report that on this subject the system is hopelessly inadequate. Just like the HIV debate of the 1980s, there’s dissention among the experts about what Lyme disease is really capable of, how it’s transmitted and how to treat it. And unfortunately the camp that says Lyme disease is no big deal is better funded and has better political ties. They write the treatment guidelines that the CDC follows, that insurance companies use to make decisions about funding patient care and that allow the federal government to prosecute doctors who don’t follow their recommendations. The other camp that serves hundreds of thousands of patients just like me, lead by ILADS, knows better. They recognize late stage Lyme disease and are working to educate physicians and the public so that fewer folks end up like I have. But patients are caught in the middle. Most doctors won’t recognize our symptoms, they’ll tell us Lyme disease is no big deal, they’ll run the wrong tests, or they’ll run the right ones and give you horribly inadequate treatment and tell you your lack of recovery is simply psychological. Educated, effective doctors are out there, but they keep a low profile and they can’t accept insurance. It’s a mess. (Good documentary here, btw.)

Now that I’ve been educated, it’s clear to me when I contracted this disease, it’s clear to me that it’s flared up in new ways every few years for the vast majority of my life, it’s clear to me that it turned dangerously neurological in nature on June 5, 2005, it’s clear to me that it’s responsible for the destruction in quality of life that I’ve suffered this last year and it’s clear to me that every doctor I’ve seen in the last 20 years missed it. Am I mad? You betchya. But not at anyone in particular. The doctors who’ve treated me over the years, they did the best they could. They are only as good as the information provided to them. And that information isn’t good enough. Besides, I found that anger has never really served me well anyway. So enough of that.

What I choose instead is hope. I finally have a proper diagnosis, I’m working with doctors who know what they’re doing, and so long as I can find a way to fund my care out of pocket, I can fight.

The other exciting change in this story is that I could get well. There’s no guarantees, as the fight is long, difficult, expensive and often harrowing. But, if I can beat late stage Lyme disease, it’s possible I could lead a very long and healthy life – possibly even free of many of the diagnoses I’ve collected to date, free of MS, free of thyroid disease, free of the muscle pain, the blurry eyes, the ear trouble, free of all that’s held me back. It’s a radical change in perspective, and one too promising and scary for me to feel comfortable embracing just yet. They say the longer you’ve gone untreated, the harder the bacteria is to control. 20+ years sets a high bar for me. But a high bar has never scared me before in this life, and I don’t intend to let it scare me now. I’m just going to fight like hell and see how far I get.

The world needs more late stage Lyme success stories. I plan to be one. I will document the journey here on this blog. For those curious, I invite you to follow along!

Let’s do this.

-k

The Western Blot and my “you don’t have lyme” diagnosis

Testing for lyme disease is a tricky thing. The available tests are not very reliable, but from my understanding the Western Blot test is the best we have. It tests your blood for two types of antibodies – IGM, which signifies a current infection, and IGG, which signifies an older infection. If your test is positive, you 100% have lyme disease. But if it’s negative, it’s possible you still have lyme and it just didn’t pick up enough of an antibody response. In other words, false negatives are common, leaving doctors to diagnose primarily based on symptoms (which, unfortunately, most aren’t educated about).

There are several markers of lyme to test for, and different labs test for different markers. Many believe that Igenex laboratory is the gold standard, testing for the broadest range of markers. This is where I had my blood test sent.

To make things even more complicated, there are different perspectives on what constitutes a “positive” test result. The center for disease control (CDC) set very strict standards, requiring that you test positive for 2 specific strands of IGM antibodies, or 5 specific stands for IGG antibodies. Igenex, however, has more accurate standards – including more markers in their results and weighting them differently. Testing positive for a protein found in the tail of the lyme bacteria, for example, weights your results more positive than just testing positive for a spiral-shaped bacteria (spirochete) which may or may not be Lyme. Makes sense to me.

The Western Blot comes back showing multiple markers for lyme disease, one on each row or your results. For each you will show – (negative), + (positive), or “IND”. If it’s positive, the number of plus signs (1-4) will indicate how strong your antibody response was on that marker. IND means that you had a response, but it wasn’t quite strong enough to be a complete positive. Most lyme-literate doctors will treat this as a weak positive.

My test results came back on June 4, 2015. It was the day before my 10 year anniversary of my multiple sclerosis diagnosis. I walked into my naturopath’s office curious to know whether someone got it wrong 10 years ago, and excited that this could be a path to wellness.

Thank goodness I’d done my research on interpreting the Western Blot test. She handed me my copy and we went through it together.

First we went through the IGM results for a current/recent infection. Both the CDC and Igenex require you to test positive in 2 of the starred markers. I tested positive in one of the required rows, and “IND” in another. She said I was negative. I knew that “IND” should be interpreted as a “weak positive” and recognized that I had a potentially positive IGM test result here in my hands, indicating a possible current infection.

WB - IGM

Next, we went through the IGG results. Here the CDC and Igenex have different standards for a positive. Simplifying, Igenex says you are positive if 2 or more of the starred bands are positive. The CDC requires at least 5 of the following bands to be positive: 18, 23-25, 28, 30, 39, 41, 45, 58, 83-93. I had 2 very clear positives on the double starred bands, and one “IND”; I was very clearly positive by igenex standards. By the CDC, I had 4 of the required bands clearly positive, meaning I was pretty close to being positive even by the CDC’s strict standards. Either way, any Lyme-literate doctor would look at these results and my 3-page list of classic symptoms and know right away I’ve got late stage Lyme.

WB - IGG

Notice my uneducated natruopath kindly circled “negative” next to the CDC result for emphasis 🙂 “You very clearly don’t have Lyme disease,” She said. “If you were even borderline, I’d suggest 30 days of antibiotics to clear it right up, but you’re not.” Lymies will recognize the absurdity of these statements right away! A) this is a positive test result I’m holding, if you have an educated eye, and B) we all know late stage Lyme disease cannot even remotely be cured by 30 days of antibiotics. I turned down her suggestions that I triple my thyroid meds and begin hormone therapy, and left her office with a clear path in mind.

It was time to see a lyme-literate physician to discuss these results.