If any of you saw my posts or watched the videos I've recently posted to the main blog page, you may recall I mentioned I had to stop the Cowden Protocol and resume the DesBio Bartonella Series Therapy. The reason for trying Cowden in the first place isn't because we thought DeaBio wasn't working (it was, it has, and it does!–at least for me), it was just that my body has to take such a small fraction of the recommended full dose that we can logically plan out, based on current and past experiences with DesBio for Bart, as well as for EBV (EBV free now, as of some tests we had in September to confirm no reactivation, for any who are interested! DesBio knocked it out!).
Essentially, we know what to expect with DesBio in terms of speed/amount of progress. I may not know which dose is going to make me herx in which ways, but it's more of a known than the Cowden was, and we were trying the Cowden as a "last-ditch" effort to see if it could expedite healing before my sister's wedding on June 24th (I talked about this in my post on the main blog page a couple days ago), in which I'm supposed to be her matron of honor, and am therefore desperate to at least feel better enough to do my sisterly duties on that day and any days I can, leading up to it.
Cowden was not the answer. At least not for ME, and not RIGHT NOW. I'm not saying it's not a valid protocol, but while my trigeminal nerve pain has been pretty severe over the past several years, leaving me unable to open my right eye without extreme pain, among other eye/ear/head/jaw TN symptoms, the Cowden Protocol took my Trigeminal pain to a new level–a level of pain I honestly didn't think was possible, and that's saying a lot, honestly, because my pain tolerance (as I know is many of yours) is very high. So after 3 weeks (one week at full doses, determined to do the full schedule in an effort to heal before the wedding), it became clear Cowden was not the right path for now.
So what do we do? Back to DesBio! It is vey likely that sometime after the wedding, I may have to get in with an LLMD who can help me with IV antibiotics, at least for a while, since my body can't tolerate any orally at all, and this disease is now so far neurologically progressed (tends to be the case when it's undiagnosed for 20+ years before you even get a diagnosis, and even more so when your body can't handle the amount of treatment it needs in the time you need...or WANT, leaving you 4 years down the road, ahead with some of your infections, like my EBV, but also still suffering further neurological damage as we desperately try to treat the Bart, Lyme, and the other buggers that are left–don't have the energy to type them all right now).
So while combination IV antibiotics, as much as I don't want to go that route, seem to be at least something we need to try for a little while when able to get in with a new doc (we have plans I can't discuss right now because they're not final), see how I respond, endure any herxes, just to see if we can at least get a handle on this neurological progression. I know some of the neuro symptoms are heroes, but others are there and sometimes progress further when I have to take treatment breaks, so it's not just the herxing, we have to get something strong into my brain to kill these things.
But, for the actual topic of this post...
DesBio Bartonella Series Therapy:
Im currently still taking 2 drops of whatever vial I'm on at the time. Short overview for those who don't know how the boxes work: ten vials with about 50-60 drops of liquid, eachbin a different dilution. Vial 1 is the strongest (most concentrated) and vial 10 the weakest (most diluted). Currently still on vial 10 (we're going backwards because 2 drops of vial 10 is still proving to, for lack of a better phrase, kick my but, despite detoxing.), but should be on vial 9 soon, since I had already made it through part of vial 10 in January/February before the Cowden experiment.
What symptoms am I experiencing while herxing this time? Honestly, that's hard to answer, because I swear the herx presentations are changing with each dose. But some of the more prominent symptoms that are flaring for me are:
- All of my neuropsychiatric symptoms are in full force: Anxiety, agoraphobia, depression, OCD, hallucinations, panic attacks, resurfacing of disordered thoughts about food/self-image, and the list goes on. Sick I can't type because they actually trigger hallucinations, but remember we're all unique, these are symptoms I've battled on and off (some lifelong, like the OCD) for years even before we knew Lyme and friends were players in this game, so it makes sense they're flaring so much for me.
- Full body joint pain (specifically my bigger and major joints–shoulders, elbows, wrists, hands/fingers, hips, knees, ankles, and all places in my feet).
- Burning neuropathy, to the point I can't have clothing even touching my body at times. This also goes along with the classic Bart foot pain (burning neuropathic pain), which also happens on my palms, but is present in my feet every day upon waking and usually throughout the day or at night, as well.
- Fatigue fatigue fatigue fatigue. It took effort to even type that word four times, because it's been such a hard blow to the things I've been able to do a few times, and want to continue doing on good days (being vague purposely, but know that not everything is just symptom after symptom, there are better days and victories, this is just a treatment update). But with everything, it will cycle. And I'm not responsible for doing anything more than I can on any given day, because my JOB is getting WELL. Period.
- Oh my, the neck pain/stiffness/drawing to the right; headaches of all kinds (inwont even lost them all because I'm having literally every major type of headache that exists, just not always at the same time...but often, more than one kind, and Bart is making them so much more prevalent. I realized the other day it's been 1,650+ days (not counting the days before I was completely sidelined, which were often filled with headaches of then-unknown origin) of a constant headache of some kind. Throughout this journey, I have never had a headache free day (or hour)–I'm not exaggerating. Even with the strongest meds and supplements, they only get taken down a notch, and that's if I'm lucky. I've actually forgotten what it's like to NOT have a headache, so that's a fun tidbit fo you. (Side note: obviously not "fun," but I have to try to laugh, however ironically, when I can, and 1,650+ days with a headache deserves a medal for increased pain tolerance, imo, and that's for all y'all, too).
- Lastly, even though there are more types of symptoms flaring in these herxes, I want o mention specifically: sensitivities. This includes sound, light, touch, and smell sensitivities. The sound sensitivity is particularly rough when I do Bart treatment, and we happen to live in a neighborhood where there are at minimum, 4 lawnmower and weed eaters run throughout the day, which makes my body feel as if it's vibrating and about to explode from the noise and frequency...every day of each week fo spring so far. The smell sensitivity have reached new heights as well; I've had multiple chemical sensitivities for years–our house is completely scent-free as far as detergent, bath products, cleaners, and everything else, except for essential oils, some of which are also too strong for me to tolerate now, even though natural. The biggie with these sensitivities, though, is that my family has always been able to eat around me without me reacting to the smell of their food, and I always considered myself lucky, that my MCS didn't apply to food smells. Well, I was lucky. And now I'm still lucky because I'm alive, but less lucky on the sensitivity front, because more often than not, if Eog eats something hay require heating (and therefore has any smell to it whatsoever), we can't even be in the same room. And the one thing I do eat that has a smell to it was okay for a couple of weeks, yet I've now started having problems with it, too, so I'm trying to find ways to work around it as best as possible.
I know that was a lot, and I know it seems like I'm complaining, but I assure you I'm not. At least not in the "Thai isn't fair so I'ma complain" way–I'm just sharing my real experience throughout this treatment, which has left me screaming at God multiple times to just take me home, and even though I think I mean it when I scream it in pain and feeling hopeless, I am so thankful God knows I don't ever really mean it; not in the very core of my soul. I have a calling to fulfill, and while I wait for the day I'm able to fulfill it fully (heck, it still needs to be revealed in more clarity, so there's plenty of time), I'm trying my best to cling to what I KNOW; that God is putting these puzzle pieces together, slowly, but one at a time, and I'm trying my best to trust the process. I'm also working on some more neuroplasriciry work, so hopefully that will help with progress down the road, too.
Keep fighting, friends–even if it feels like you don't want to. You are worth it. Life is worth it. You are worth life. Please don't let the enemy convince you otherwise.
This is the space where I plan on giving updates specifically related to the treatments I'm doing at any given time. Having this all on one page will ideally make it easier to locate treatment-related information without sifting through my archives, although if you're looking for a specific keyword or want to read about a specific protocol, the search function on the site can help with that!