(Currently I am sitting in the lobby of a pulmonary unit in a hospital, waiting to experience a “methacholine” challenge. I am looking forward to getting out of this waiting room, because like all medical waiting rooms it has a TV blaring in the corner. And as usual, what has been chosen to blare at patients is news. Anxiety provoking, rapid talking, flashing pictures of disasters and human pain over and over. The drama filled news for all of us sitting as we wait for procedures that we don’t want, for conditions that we are anxious about, that leave results hanging in the air for days if not weeks. I wish we’d rethink the whole TV thing. Why not give us pens and paper? Glue and markers? Books? Crosswords and puzzles? Anything but TV. )
breathing test booth. the test took 1.5 hours.
Health Update: (at the conclusion of the above mentioned breathing test, I was diagnosed with a reactive airway disease. I have no other info yet. It could be asthma, eosiniphilic bronchitis, COPD…it will be a while before I know. Likely it stems from EoE).
The bone scan was normal. The agglutination test to visualize actual Brucellosis bacteria in my blood was clear. Blood work to test for latent TB, thyroid problems, and other markers for disease was normal. Dr. Clear, who ordered these tests, felt that much of my symptoms were toxicity from the antibiotics, and thus he took me off of all antibiotics at the end of August. Dr. Clear doesn’t expect that we will see each other again any time soon. He said, “I think you’re doing well enough that I don’t need to see you again.” The most welcome sentence I have heard all year.
Brucellosis: I want to share this with my friends in the West Bank where Brucellosis is much more common than here in the states. I have a friend there who is an expat. He tested himself for Brucellosis because of my story and because he had some strange symptoms. The clerk told him that Brucellosis is very common in his area. By my friend’s own account, he has eaten PLENTY of the unpasteurized cheese that I ate, so he had cause for concern. Thankfully his test was negative, too. So perhaps caution is wise here, but panic is unnecessary.
I still have EoE, but it seems to be in remission. I am eating well on a very restricted diet. I have added in 2 seed-like grains which keep me from feeling bored with my food: amaranth and quinoa.
I have cut out most nut butter, but not nuts entirely. This is mostly to reduce the load on my liver as the liver has to process all the fat from nut butter. I am on a gut healing protocol given to me by an MD which includes anti-inflammatory capsules (herbal) and a strong probiotic. I have added in a good amount of fermented foods and am soon beginning to make my own. I have cut back on caffeine and sugar, although sugar is one thing I am still working on (hard to let go of raw honey and bananas). I HATE stevia, so that’s a non-starter. I use cashews, cinnamon and coconut to get my sweet cravings met through food. But I still eat raw honey.
Chronic cough: I have been coughing for nearly a year. EoE patients often have asthma, and vice versa. Pulmonary and esophageal diseases often interact with each other, or one leads to the other. As I mentioned above, I was diagnosed with reactive airway disease yesterday morning.
Body Pain: I hurt all the time in my ribs, and very often in my legs. Lyme maybe the culprit here. But somehow it feels more manageable than it used to. Maybe the fact that I am exercising again is helping (elliptical added to my yoga). Exercise and yoga asana and pranayama make the pain almost go away.
Lyme: This one is hard for me to write about. As you know, current Lyme tests are antibody tests. They can tell you if you’ve been exposed to the spirochete bacteria that causes Lyme, but not if you have an active case of Lyme Disease. You can tell if your body is in an IgM response stage or an IgG response stage, but again not if there is active disease. I had an IgM response, so my body was mounting a defense against Lyme when I began antibiotic treatment. There are also other things that routine tests miss, such as the plethora of other tick borne infections that cause illness. Lyme disease remains the only tick borne disease commonly tested for. You often have to find a LLMD to go further and test for variants of the Borrelia spirochete and the many “co-infections”. VERY costly.
Also, there is a lot of misinformation among…everyone. I hear about people all the time who are denied a Lyme test if they don’t have the classic bullseye rash (I never had that, and I have Lyme). They are told they probably don’t have to worry if they don’t see the rash. In my case, the real problem was that you cannot tell by my serology whether or not I have active Lyme disease or/and how long ago I was exposed. Also, my positive test was equivocal, and some doctors have questioned whether I have some other thing going on in my blood that could cause a false positive.
This is why many doctors treat Lyme clinically. That means treating on basis of current symptoms rather than serology alone. I used to think this would be a very foggy way to go, but now I think it’s the only smart way to treat. Here’s why:
My story is that in the midst of all the EoE suffering, I got bitten by a tick. That tick tested positive for Lyme (I brought it in in a baggy and they sent it off to a lab) which means it could have transmitted the spirochete to me. So that is a reason to treat, in my opinion (though not in everyone’s opinion. Many would wait until symptoms appear, but in my case I was already so ill all the time I decided not to wait). But I also asked for a Western Blot at the same time (just day or so after I was bitten by this tick so too early for it to be relevant to this bite) because I wanted to know if I had an existing Lyme infection that could have been a player in the sudden illness with EoE. The infection I was testing for would have been decades old, since the last time I was bitten by a tick that I remember was easily 18 years ago and I spent the ensuing years in Texas where my outdoor exposure was limited due to the heat and it’s not a huge den of Lyme disease there anyway. The Western Blot was positive. So I have Lyme, right? Maybe. Probably…but not certainly. At the time I thought I was certainly suffering from Lyme disease, as Lyme disease can contribute all kinds of gut symptoms and that was the locus of my distress. But there is reason to doubt.
First, my symptoms were consistent with EoE, not typical Lyme. I was not clinically presenting with Lyme. Second, my Western Blot was not unequivocal. It was positive, but at least one of the bands was not typical of a sure-thing Lyme infection (there is an art to reading tests like the Western Blot). Third, there are cross reactions and false positives with Western Blot tests and, at the time, my serology was looking strange: WBC was consistently low for example. And talk about false positives. I tested positive for twice for Brucellosis and was even being treated for it when the third test finally ruled it out! So yes, false positives happen in antibody testing. So I began antibiotics for the Lyme. I felt better at first. I thought I was treating correctly because I felt better. But then I started to slide downhill as we began rotation of antibiotics and as weeks went by. It turns out that antibiotics can create a feeling of getting better at first because they can initially act to suppress inflammation and then later that effect diminishes and the patient feels worse either due to the disease or the toxicity from the drugs or both. But I didn’t know that, and I thought that as I “got worse” it was due to Lyme. So I did 3.5 months of antibiotic therapy, not getting better, before getting exhausted and toxic.
Finally, the Lyme infection I might have is potentially 2 decades old. Since I am not clinically presenting Lyme symptoms, I probably don’t have active Lyme and maybe I never did, at least in my recent memory. I do remember a period of less than wonderful health in my early 20s around my first tick bites, but then again I was a waitress in a big city working crazy hours to pay rent and dealing with some other trauma in my life. In this light, one could say I got the wrong treatment. Which totally sucks both in terms of how much it hurt me physically, mentally, emotionally and how much money it cost us. My doctor was VERY expensive and didn’t take insurance and this basically wiped us out. And the drugs left me with a terrifyingly real case of candidiasis. Which is kind of terrible and is completely due to antibiotics.
But here’s another way to see this, and this is the way I see it. There are no mistakes. Only opportunities to grow and learn. The antibiotics may have helped treat the Lyme I may have been exposed to in the recent tick bite or in the past tick bites. With the mega-doses of abx, maybe I hammered those spirochetes. Plus all the testing my LLMD did resulted in me knowing that I have a particular genetic mutation that inhibits a detoxification process in my body which is an important thing to know (this is the MTHFR gene and it is important in methylation). AND, and this is important to me, what if a decades old Lyme infection actually is a culprit in my current EoE situation? I can’t say that there is anything that has convinced me to rule that out. My doctors don’t think so, but I really believe it’s connected. No, I KNOW it’s connected. Lyme is a nasty little bug that attacks all your body systems. Your brain, your organs, your joints and bones. It has staying power, hiding skills, and lurks in the body everywhere all at once and can evade medicines. It is immune mediated, it is inflammation causing….it is a really yucky bug. I believe in a connection between EoE and Lyme. So that leaves me… completely on my own at this moment in my health.
In terms of treatment I am waiting to feel that I need anything further. I am waiting to know for certain that my body needs my help. I did 3.5 months of heavy medicine. I have modified my diet massively. I am exercising again fairly regularly. I am able to care for my kids with more patience and energy than I could when I was newly sick with EoE (and whatever else). Things are so good in comparison to those days! Things are getting better all the time. I am breathing. I am so grateful.
This illness has given me deep understanding and empathy for those who suffer with chronic illness. I understand the pain now, and how bodily pain is just the tip of the iceberg. I understand the layers now, the anxiety of illness, the depression, the exhaustion, the alternating rage and the acceptance. The way it changes life on all levels. Your roll in your family, work place, and friendships changes. People see you differently. You cancel appointments without enough notice. You may feel you have to lie about why you are canceling. All of this causes isolation. You grapple with depression, fear, and of course pain. Pain is more than pain. It changes the way you move, the time you go to bed, the things you focus on, the things you can do and eat and read and hear. I get this now. But here is what I also know: the breath can literally move you out of pain. It can move you out of darkness. It is THE key to vitality even in the midst of disease. And when you couple breath with movement that is enhanced by breath as in specific yoga asana, you can support the body AND the spirit to move into a better place. Think nyasa, mantras of wellness that you yourself design, think spaciousness in the body, expanding internally to embody the reality that you are more than your disease, more than your diagnosis–thank you Tammy—more well than unwell. The breath is almost limitless in its ability to reconnect you to your inner peace.
Things I love. The gratitude I feel.
fall leaf piles to play in!
Sufyan conquering his fear of this climb. So proud!
Learning new skills.
Beela on the playground with my kids.
Beela being such a patient, maternal dog with my little ones.
sensory exploration with paint
My friend who let Sufyan try her real camera.
friends for my kiddos
friends who like to paint
Halloween ghosts made by my kids!
the kids playing and creating things while I do 30 minutes of elliptical machine
the love they share, even though they bug each other a lot right now.
my exuberant 3 year old Laila dancing in fall weather and fall leaves
The first time the kids made a recipe all by themselves. Sufyan read the recipe, Laila and he dumped and mixed and tasted it all…Gluten-free and dairy-free, these almond flour chocolate chip cookies are divine.
sharing with them my love of nature. There is no better playground.
My friend Joy, who is an amazing artist. She gifted Sufyan this incredible painting that he absolutely LOVES (we all do) and agreed to trade me for a painting that Faris and I love (trade me for yoga classes in her home)
This time in my life is so full of love.