I can't offer an update that explains everything that's gone on the past several months. My fatigue, both mental and physical can't attempt such a task, nor would I want any of you to try to trek through a daily play by play of the last several months, because it's been a roller coaster ride of changing plans.
What I can do, hopefully somewhat coherently, is tell you what's going on currently, health-wise. If you saw my post about our trip to DC for my first visit to the Jemsek clinic, you know that's the route we know God has led us to pursue at this point. Before I can do any actual Lyme treatment, though (i.e. get my PowerLine placed, start antibiotics, etc), we have to get three main areas stabilized, at least enough for my body to be restored enough to tolerate treatment: Nutrition, Sleep, and Pain.
There are obviously other major areas of concern (neurological, among many–the neurological aspect is what has finally gotten us here, though, to eventual treatment that can permeate the blood brain barrier of someone who has been infected between 20-25 years and actively trying to treat for the past 4 with no real LASTING progress, except kicking EBV to the curb, hopefully for good), but these 3 areas must be stabilized before we can even talk about starting antibiotics.
Unfortunately, this leaves us in a place where we feel a little like we're back to square one, treatment approach wise, because we've been given medication after medication to manage my symptoms...and one of my greatest achievements over the past 4 years was getting off the cocktail of between 12-16 pills, monthly immunosuppressant IV infusions, weekly injections, which I had taken daily for a decade-plus, before we learned the REAL underlying reason I was so sick and had so many diagnoses, and caught everything within a 200-mile radius, all the time.
That was 4 years ago. I got off of them all in June of 2012+1 (stopped taking some on June 11, 2012+1, day of my diagnosis), except for one or two to be taken on an as-needed basis, and honestly, that's the best I have felt that I can remember, since diagnosed...the month or two after diagnosis, before starting treatment of any kind, and after stopping or slowly tapering all but 1-2 rx meds (psychiatric, neurological, all meds for Juvenile Idiopathic "we don't know why you have it, but you have it" Arthritis, insomnia, and I could list all diagnoses and symptoms, but I'm afraid it would be terrible similar, unfortunately, to what most of us have endured, especially in the chronic stages of this illness. And my supplement and alternative, and then integrative journey to healing began.
I would not trade that move for anything–to start healing, I had to get off all the chemical concoctions that were limp attempts at symptom-masking, and were instead poisoning my body, which was already so incredibly toxic due to my inability to detox pathogens, chemicals, or anything else efficiently, as someone with a healthy liver and lymphatic system is able. My genetic mutations, along with over 20 years of un/misdiagnoses, had left my body a minefield in every metaphorical way possible. Stopping the medications, at least at first, and beginning me supplement regimen aimed largely at the same three factors we need to stabilize now, those steps were integral.
As I mentioned, over the past four years, that's when I felt my best, the July/August of the year I was diagnosed (dxed in June 2012+1); partially because of hope and an answer, but mostly thanks to stopping or tapering off almost every rx med at that point, and rebuilding my body with supplements and solid nutrition, neither of which my body was accustomed to receiving. And I'm telling you right now, my body LOVED it! I, of course, still had random symptom flares and herxes once I did start treatment, which has taken many forms over the past four years, including, but not limited to:
- DesBio Series Therapies – Did help me get rid of EBV, but we realized at this point, I've had these infections for so long, and was on immunosuppressant medications for a decade, the Lyme, Bartonella, Mycoplasma, chronic systemic Strep, likely Babesia, and more, and those types of infections could not be touched; I could barely tolerate a fraction of a fraction of a fraction of a dose, I mean literally one single drop every 5 days, and even then the herxing was major, so my nervous system is at the point where it would not receive or show any benefit even after several months enduring herxing at very low doses. I FULLY believe in this therapy as an approach to treatment, and as I said, it DID help me kick active EBV to the curb, or at least to the level where it's not detected on tests (it was previously off the charts high, way too high to not be detected for so many years, but I digress)
- LDI/LDA injections – These were the most helpful thing we have tried up to this point, but around 2 years ago, right around the time we found "my" dose, the dose that was helpful and therapeutic with minimal herxing and maximum improvements, they became nearly impossible to get, because apparently LDI and LDA are now combined (maybe they wanted to have just one acronym, since they are different processes but work similarly, so I could be incorrect, but I believe the accepted acronym as of the time of this post is LDA, standing for Low Dose Antigen...but again, I could be wrong. I am right about this, though: they all stem from Enzyme-Potentiated Desensitization, so they operate very similarly, and it was the enzyme that became impossible to get, which is necessary for the injections to have any effect. One pharmacy in the country has a monopoly on it, and they're located farther than we could travel to receive injections from a doctor in that town. This was disheartening to us, since LDI had finally given a glimpse of what life can be like when I feel better, even a little bit, but everything DOES happen for a reason. That sounds cliche because it is, and also because it's true.
- Ultraviolet Blood Irradiation (UVBI)
- Hyperbaric Ocygen Therapy (HBOT) – Once in 2015; I couldn't tolerate more than a couple minutes before I had to get out, and at that point it wasn't even close to the therapeutic level required)
- cavitation surgery – to address infection from root canal atop trigeminal nerve (didn't solve the pain; my TN pain is type 2, is caused by the infections/damage from them, and they are still very much active)
- ozone injections – (ended up herxing within moments after receiving them, in the examination chair, crying from the pain)
- Cowden Protocol
- many herbs/supplements, changing/adding/dropping/adjusting as needed.
- Adjusting an already restrictive diet (Lyme diet) with each annual food intolerance test report,
- And of course there were.are various/assorted/numerous other methods, along with various treatments to address systemic yeast/candida, h.pylori, and many more issues.
Here's the bottom line:
I. Did. Not. Want. To. Take. Prescription. Medications. Regularly. Ever. Again.
And yet, despite the supplements I currently take, my lack of progress with other treatment methods has solidified, at least for now, the evidence-based fact (based on my life) that I need the more intensive, invasive treatments that IV antibiotics provide. It's a catch-22, though, because while nutrition, sleep, and pain all need to be addressed and somewhat stable/somewhat managed, due to the lack of ability to achieve any of these via supplements, guided imagery, meditative prayer, nothing is taking hold, yet. I had my first in-person visit at the Jemsek Clinic in DC on June 8, and have since had two phone follow-up appointments. So where am I?
Back to square one?
Roger mentioned this last night, not meaning it in every sense of the word, but just explaining that we are once again to a point where we are trying to manage/relieve my symptoms with mostly prescription medications, and my body is rejecting them all/not responding in any way/having the exact opposite response I should have; all of which stems from a decimated nervous system. So we keep trying new meds, some of which I took in the past, but haven't in years, but I make a commitment that if they could promise me I'd only be on these meds to stabilize myself before/during treatments, I would try almost anything, because God doesn't lead us places with no plan (of His) in place. It's our job to hold up our end of the deal and take the leaps of faith He requires to reach healing.
So, no, I am not back at square one. Meaning, we know what we're fighting, we know more about these illnesses and the way they work and affect my body than most doctors who don't work in this field, and heck, maybe some who do. We have so many more puzzle pieces than we did four years ago, we just haven't been able to put the all together yet, because God has the advantage of seeing the front side of the pieces and creating/being able to see/know the full picture and "look at the box" while we only see the underside and try to fit together what we can, when we can. And I've made progress, even though the ways in which I've made progress (primarily being ripened spiritually through testing of my faith and general human state of depravity, and also mentally, in many ways) aren't necessarily symptomatic or noticeable to anyone but me.
I am *sort of* back to square one as far as managing symptoms with prescription meds, and I'm not thrilled about that. But again, God has led us here at this point in time, so I'm just trying to stick to the prescribed treatment plan, knowing it comes from a world-renowned leading clinic in the treatment of this disease, and they're very good at taking into account what meds I may or may not be able to tolerate. While the clinic has LLMDs, they haven't had quite enough time to become "Becca-literate," as a very close family friend phrased it, even with the detailed history I gave them, because they've seen me once in person and have only had two phone consults with me thus far. So it's all a learning process, and throughout it I've become increasingly frustrated with my body's ability to respond to any medications the way it needs to, or not absorbing nutrients/not being able to get the nutrition I need to get to gain weight to be able to start treatment, and the general sense of "what next?" that comes with every passing day.
I haven't lost hope, I just lose sight of it on some days...good thing faith doesn't require sight, huh?
Tomorrow, I have a consult with a local GI doctor to see if we can get to the root of some of these GI issues, which would in turn make me able to eat more, which would help my body return to a stable place, which would allow it to accept, tolerate, and maybe even get some relief from medications we're using BEFORE WE START TREATMENT.
I cannot stress how important it is to take things as slowly as you need to in order for your body to not crash time after time, leaving you more vulnerable to developing even more secondary conditions to acquiring extra infections, even if just a 48-hour passing virus. Not pushing myself has been difficult. I haven't had the energy to push myself on most days, but since Roger was home from work for the summer (band camp started back last week, so he's back at the grindstone now), I did try to push myself on some days so we could do things together (finally got to see the new location for our local comic book shop!) before I do start full-on IV treatment, because we know that will knock me down more than up for most of the duration.
The only problem is I don't know when to stop pushing myself, and I'd venture to say I'm not alone in that, because I've seen the sentiment echoed over the years online and elsewhere: I want to push myself as hard as I can in times I feel I'm able, because I worry about it not coming again, so on those occasions, I always push just a little too hard. This means Roger then carries me back from the car to the bedroom, lays me down, helps me get my "offending" clothes (clothes that have been outside the house and therefore smell like whatever building/room visited) in the laundry and put clean pajamas on. At which point I've lost all physical strength and am in a full neurological/cognitive spiral, as well.
I feel like this has been all over the place, but if it feels that way to you, friends, please know that's just because my brain kind of feels like that right now, all over the place, and ping-ponging back and forth so fast I can't keep track of thoughts without being repetitive or forgetting my point completely. Some extra-fun (sarcasm intended, but not scathingly so, just have to find ways to laugh) symptoms that have emerged lately, which we're hoping will resolve once my body can have adequate nutrition and accept medication: passing out from exertion of screaming over the noise of daily lawnmowers, or just from sitting upright for too long, increased sensitivities of all kinds, which means neither Roger or I are able to have warm food, because the smell is so nauseating to me, even if he's brewing a single cup of coffee, or if he has any cold food that has any smell to it whatsoever, the former forcing my to near-suffocation hiding my head under my pillow, and the latter making it close to impossible for us to have meals together at all. And I currently say "meals" lightly, since I'm unable to get the nutrition I need fully, but again, hopefully that will be resolved to some degree after tomorrow's GI consult. The episodes of tremors/spasms/seizure-like jerks/myoclonic jerks haven't been extremely frequent, but when they happen, they now happen in ways they haven't before, so that isn't exactly soothing.
Okay, I'm not going to list anymore symptom flares now, other than to mention fatigue has also been very severe this entire year, honestly, and I've been absent during many periods online due to the aforementioned physical and mental fatigue, and my introverted-ness, requiring isolation from social media and conversations for periods of time, so I can recharge. But discussing symptoms isn't particularly helpful for y'all or me, at least not in this context, so I'll just note that all of my "Becca status quo" symptoms have increased or remained, and new ones have surfaced, so we're just doing everything we can to heal the fried ends/synapses of my nerves so they can cooperate a little more nicely.
LYME STEALS, GOD HEALS. PERIOD.
I'm trying my best to cling to that truth, and to rest in His comforting arms on the days I don't seem to be able to find any relief of comfort in this battle. I know who made me, and I know He's refining me through flames so high and dense I can't even begin to see what he has in store, but HE knows, and I'm okay with that. Even when I'm not okay with anything else.
If you were able to make it through this post, you deserve a medal, I commend you.
But alas, Michelle Kwan deserves two Olympic gold medals and wasn't awarded either, so I can't make you any promises.
She does have 65 golds earned in Senior-level competition, though, as well as being the forever reigning queen of the 6.0 scoring method (the REAL judging method; get outta here with this current scoring system and major emphasis on technical points above artistry), so that's pretty cool. Also, she now work with the UN, which is also very cool.
That was completely unrelated, but Michelle Kwan does bring me joy, and I'm trying to choose joy in any way I'm able. At the end of this post, it ended up coming via facts about Michelle Kwan's legacy and competition history.
Thanks for tolerating my scatter-brained-ness, I hope at least this could provide solace, camaraderie, or even encouragement or comfort to anyone. You are worth it, please don't let the enemy convince you otherwise. You are worth life. You are worth health. Keep fighting, even if you don't want to, especially if you don't want to, because YOU. ARE. WORTH. IT.
And so am I.
Thank You, Jesus.