The morning we began to leave
The sun is up, the birds are awake and loud in the parking lot outside our apartment. My son is awake, of course, by 6am so here I sit sipping tea beside him while he reads Tin Tin.
This is a massive apartment complex. Hundreds of doors and endless beige paint. Blacktop, cars, and other lives stacked one above the other in neat towers. Identical floor plans, windows with identical venetian blinds, trees spaced evenly around parking spots. Neat. Tidy. We sit inside our screen, my son and I, surrounded by boxes ready to pack so we can fly outta here.
Breakfast is ready. Laila is up.
Even though I want to leave this apartment, I know I will manage to miss our days here. I always do. I will feel the echo of our life in the empty rooms as we pack. I always do that. I will literally feel my kids’ voices in the air, and feel all the mornings, all the bath times, dinners, our life. Whenever we pack up and leave I feel the pinch of nostalgia and the passing of time. But this time we are moving to a home! This move (our 8th move and so our 9th residence in 3.5 years) is going to be our last for a long long time. Insh’allah.
sunshine through the clouds
Briefly, it’s pretty much all good news! I got the results of the EGD. The biopsies taken of the areas of concern in my belly were expected to return significant eosiniphilic activity and thus indicate progress of the disease and failure of my attempt to control with diet. BUT that is not the case! No eosiniphil activity in my stomach! And super super low eos in my esophagus!!! In other words, my EoE is in remission by diet alone after all!!!! HOORAY!
So why the bleeding and why the bile? It’s impossible without further testing (that radioactive egg test) to say for certain if I have gastroparesis but the bile does indicate it and the biopsy was non-specific which means likely idiopathic gastroparesis (nice way of saying that it could have been a virus causing it or a bacteria but who knows). Same with the tiny bleeding ulcers. However, I began a short course of a PPI after the EGD results and by the time I was in my GI’s office for results I was feeling pretty great again. At the end of the visit he basically sent me off with a big congratulations and “You’re better! I’m very pleased. Have a nice summer!” He was shaking his head in disbelief. He hadn’t seen this success strictly with diet before and he asked me to please call our allergist and let him know about this success. I feel so gratified because the diet change has been very hard work. Not only is my diet very restricted, but I basically have to make all my food at home and take food with me when we are out so that I can control the ingredients.
Typical breakfasts, lunches and dinners for me are repetitive but functional. What you don’t see is that I am also eating some organic meat. I am conflicted about eating meat, but this diet leaves no other source of protein.
If I add anything I react to back in, my EoE will return. EoE is so miserable that I am not complaining, though. Who needs chocolate when it means intense pain and nausea?
The Plot Thickens: Lyme Disease co-infections do what now?
It turns out that Lyme disease and/or it’s co-infections can cause pretty much any symptom you can think of from arthritis to allergies to heart problems to dementia. Lyme loves to infect joints, heart, gut and brain tissue. In particular I would like to highlight for myself the fact that Lyme and co-infections in the gut can cause gastroparesis (!) and Lyme (or a co-infection) has been noted to cause eosiniphil increase in the blood. It also manifests as allergies (sudden onest to food or to other sources). It can also cause random pain in the body.
(more info here about Lyme and co-infections, and an article about treatment by my doc here)
So here is me: gastroparesis, sudden onset allergies to food, eosiniphilia, EoE, gastrointestinal distress, deep pain in legs and feet, brain fog and fatigue. And here is a tiny slice of what Lyme can do: gastroparesis, sudden onset allergies to food, eosiniphilia, gastrointestinal symptoms, deep pain in legs and feet, brain fog and fatigue.
It doesn’t take a genius to surmise a link between what I’ve been going through and my Lyme disease infection. It was a lucky discovery that I had it at all, since it seems to have eluded the differential diagnoses of every doctor I saw including my holistic docs. I say lucky because the longer it goes untreated the worse your chances of ever ridding yourself of Lyme. I feel like an angel was guiding me when I asked for that Western Blot and got a positive result. I am quickly learning that one cannot settle for being a patient. A patient won’t get the help she needs. To get help, the patient MUST research and advocate for herself.
My Current Lyme Protocol
I am posting this so that other Lyme sufferers can find it and compare their treatment. I know it has helped me immensely to see the protocol others are on.
injections of Bicillin (antibiotic) every 3 days into my butt.
Daily 2 doses of Biaxin (antibiotic).
Daily 2 doses of Fluconozole (anti-fungal).
Daily 5 doses of Mycelex lozenges (anti-fungal).
To sustain the bicillin in my system during my 3 days between injections I was prescribed a drug Probenecid. It made me so nauseous that I had to discontinue it.
notes: my husband is giving me the injections at home. Insurance has denied coverage of these and they are $$$$$, which sucks. This means the bicillin better work asap because it is not sustainable for us. Injections at home are going very well, thanks to my incredible partner who is both kind and brave about it. My butt cheek is sore for days but that’s par for the course and we are rotating spots and sides of course. The anti-fungals are needed but make me nauseous. Needed because I did get a nasty side effect called Black Hairy Tongue. Look it up, it’s gross but harmless and it’s gone now.
Sacchromyces B (probiotic)
milk thistle daily
cholorella, buffered vitamin C, hemp protein, Intramax vitamin supplement, hemp oil, vitamin A
Lyme specific formulations:
Transfer Factor Lyme Plus
Transfer Factor Multi-immune
homeopathic Ipecac for nausea
Continued restriction of nightshades, caffeine, fruit and nuts.
Continued avoidance of all grains, dairy, soy, farm-raised fish, legumes, sugar, chocolate (have cheated once or twice with a tiny amount), and alcohol.
Have added in: organic eggs and some nuts. Occasional cup of caffeinated tea seems ok if less than 2x/week. Using only raw honey as sweetener.
Also: epsom salt baths and body brushing to increase detoxification.
Mental and emotional aspects of Lyme treatment
Briefly I want to say that Lyme disease and it’s treatment can be intense, scary, and even traumatic.
apprehensive about first IM injection of bicillin. waiting for the nurse.
even the surrounding medical equipment made me feel like I had entered another dimension. The LYME zone. O2 chamber.
arm chairs where people sit while they get IV therapy. Just feels so strange to be here.
I am currently dealing with a fear of ticks that manifests in fear of nature. Me, a nature lover who lived in a tent for years during the summer and spring…I now have a serious resistance to sitting down outside in the grass and refusal to go off trail and explore areas that are likely to have ticks. I am working on it, since my MO as a mom has also been to constantly get my kids outside to play in natural settings. SO basically I force myself to get on with life, and get out there. It takes me tick checking myself and the kids all the time, and I use a natural tick repellent every time we step outside. BUT these magic feathers do help me deal with my fear and not be immobilized by it.
into the woods we go.
Meanwhile, I have to constantly monitor internal dialogue about getting injections and being on huge doses of medicines and their side effects. To help, I have joined a meditation group based on mindfulness technique as taught by Jon Kabat Zinn. This technique is specific to chronic illness and chronic stress. It’s called Mindfulness Based Stress Reduction, or MBSR. Something to keep in mind if you are dealing with a chronic illness or other stress. It has wonderful studies to back up it’s efficacy.
And yoga yoga yoga yoga and more yoga. Mantra. Asana. PRANAYAMA.
laila monkey yoga
We are now in our home!
the seller is a cool dude, and he and his daughter left this for us on our first day in the house. lovely!
making the house theirs with some window crayons, also left as a gift for Sufyan and Laila by the seller. You rock, J.
Sufyan insists that we not call it the “new house” but instead only refer to it as “home”. Can’t blame the poor kid with all the moving we have done.
S and L in a previous move from Austin to Ohio. I believe it was move #6.
S and L in this move. Sitting on their rolling suitcases and ready to go!
Laila unpacking her shoes!
Laila and Sufyan love the house. So do Faris and I. Such a feeling of peace for us to wake up in our own space, and in particular to be able to simply walk out a back door to get outside! My kids play outside in their PJs when they wake up, and naked at noon, and any other way they want. I love it. There is a persimmon tree which makes for great climbing and is going to bear a lot of fruit. There are also 2 apple trees which have sour little green apples all over.
Sunrise in our backyard is magical.
In the morning, Laila and I have taken to sitting on our bench swing and listening to the birds while Sufyan climbs his persimmon tree first thing. We have a resident wood pecker. In these moments life is so perfect. So sweet. I drink it in and am so grateful for my family and for having a home.
7am. Sufyan and Baba share a box of raisins and a little morning swing.
S and L reading in their new room!
Time for silliness! I told them to get dressed and instead we had an impromptu costume party. Love it!