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.
Hey guys. I can barely see to type (hard to keep even my one good eye open due to pain), but I felt this important to share re: DesBio Bart, so please bear with me if I am a little repetitive or scatterbrained throughout this post. I know I didn't type an update for dose 2, but dose three feels like it deserves an as-it's-happening update.
So, tonight, I took my third dose of this round of the Bartonella series, which consisted of a few drops from vial 10.
(My second dose was 2 drops from vial 10, instead of vial 1, following the plan I explained in the video in my previous entry...I apparently got ahead of myself and let my perfectionistic, Type-AAA personality push me too far, convincing me that since I handled dose 2 better than dose 1, being drops from vial 10 instead of vial 1, I could stand to push the limits and up t a couple of drops on vial 10... NOPE.)
Y'all, when a treatment protocol is designed to start low and slow (as all are, it seems, when it comes to Lyme and friends), FOLLOW THE PLAN.
Ive made this mistake time and time again, and most of the time I'm good at sticking to the plan and pushing just enough, without pushing –too much–.
But today, I stupidly ramped up my dosage and took 4 drops (which I will NOT be doing for the next several doses–this may even force me to take longer between doses, at least for dose four, but when I resume, it'll be back at 2 drops to get back on my low and slow plan for hopeful success!).
The result? Not something I'm proud to share, picture-wise, but I'm also past the point of pride here. This is info for any who may ever come across it and need it in the future.
30-minutes after taking the 4 drops, I somehow pushed through the almost immediately increased joint pain to go try to brush my teeth, and when I looked up, I saw something I've coke to associate heavily with Bart and Bart herxes–severe torticollis/wry neck/jerky bacteria causing my neck to pull to the right and only be straightened with my hands, at which point I scream, because OW.
This is the beautiful sight that awaited me. Body squared up straight with the sink and with the camera, intentionally not raising one shoulder higher than the other and instead, letting my shoulders/neck do whatever they're doing. This is what I saw:
- I have behind the head earmuffs on 24/7 for the TN pain, so that's the black color you see under my hair/on my ears (tried to edit the contrast some so all the dark colors don't blend together)
- I don't even care that my hair is ratchet with its baby curls showing. "There was a little girl, that had a little curl..."
- I think I'll start adding a hand motion to the right side when this happens, because while it hurts like heck, the entire right side of my shoulder/neck/head, in addition to splitting open head pressure/pain, increased trigeminal nerve pain, and just general overall exacerbation of symptoms, it would at least be funny if I made it look like I was intentionally shrugging, with my elbow bent and my hand held as if I'm carrying a tray at a restaurant ("I don't know." *she shrugged* "this madness just happens with these illnesses.")... Maybe I'd be the only one laughing, but even still, gotta find humor where we can, right?
WISDOM FOR THE DAY:
Don't EVER let yourself get impatient (or go back to your impatient, wanting to force healing too quickly, ways) when it comes to your treatment protocol. Regardless of which route you take, regardless of whether your doctor treats aggressively or less so or conventionally or holistically or alternatively or integratively...regardless of what treatments you undergo, remember it's ALWAYS best to stick exactly to the plan (unless the plan is causing more harm than good, of course), and it's often best to keep "start low and slow" as a mantra, to avoid immediate unpleasant experiences like above.
Okay, again, I pushed myself too much typing all this out, and my hands and eyes are letting me know–BUT, also again, I wanted the info to be out there, and as the herxing from this dose has already started to set in, I have no idea if I'll even be able to pick up my phone or move tomorrow.
God bless, friends, I wish restful sleep for those of you who are here in the US as I'm posting this, and to all of you on a consistent basis.
I hope you've all been able to find somethong to bring a smile to your face, however small it may be, and however fleeting it may be, during this day, this week, this month, this year, or even this moment.
I want to try a new format for some posts on the site, which I mentioned on the main blog page a little while back. I'm hoping it will help me keep up with these updates more frequently than when we tried this Series Therapy in 2015 (which ended up being non-existent, because I got behind and then overwhelmed, and can't often write enough to warrant a post).
So, below I've embedded a video from my YouTube channel (still in its infancy, but I plan on expanding as I'm able, hopefully for others and for myself), discussing my first dose of this round of the Bartonella Series Therapy. I'm also going to quickly mention a few reminders from my first post addressing this topic last week, before the video, since the video was taken after the first dose I took, and doesn't cover the second dose or the change we made while listening to my body and how it responded to treatment.
I'm not trying to avoid herxing, not at all,because it often IS an indicator your body is finally responding tontrearments and fighting the infections that have made their habitat in your cells for many years. But, there are times during this journey where maybe you can't detox effectively enough, or detox at all, especially with genetic methylation mutation issues, at which point killing, killing, killing the buggers often results in a herx that's not only unecessarily horrible–even though sometimes they are just that by nature, even when you are able to detox...these buggers just like to be jerks.
When I say "unnecessarily horrible" herxing, I mean that constant herxing that seemingly never lifts (different from just "flaring"), and this can actually set you back by forcing you to live in such a state of perpetual herxing, and therefore perpetual stress on your body, mind, and soul, or forces you to make the decision to postpone/hold your treatment till it calms. It's not ideal, of course, to stop treatment, especially when things are deep into the neurological stages, but it's better than herxing all day, every day, with no breaks or relief, via any methods. I promise you that. Listen to your body.
Thats a lot more than I thought I was going to (or could) type, and though my hands and wrists are screaming at me to stop, I've made it this far, I'm determined to finish this post, and I'm counting it as a victory being able to type it at all. Thank You, Lord!🙌🏻
Notes to remember about the Bartonella Series Therapy, as I tackle it this time around (more details, at least about dose one, in video):
– Details of reactions, herxing, symptom cycling, in the video below from a few days ago, but wanted to mention in print that we started with two drops–TWO DROPS–from vial 1, with the plan to do the same every three days, vials 1, then 2, then through vial 10, depending on how I tolerate the treatment.
– Many of the DesBio homeopathic remedies for infections like this are designed to take a full vial every three days, ideally making the box last a month, so you can take vials 1-10, then follow it immediately with the same thing in reverse, vials 10-1.
– My body is so sensitive to any and all treatments, mess, and supplements, though, and we already knew I reacted severely to this treatment during March-October-ish of 2015, so we purposely started slowly, with the plan of two drops every three days.
– Video shows and explains (some of) the symptoms and other things that came along with my first dose, but since I recorded it before my second dose, it obviously doesn't show that, so for now, here's the video, with a few notes below the video, addressing dose two and the change we had to make in the order of things:
After my first dose of two drops from vial one, I realized I was tolerating the dose better than in 2015, which in encouraging, yet I was still also in that "unnecessary horrible herxing" place, even though the video doesn't show just how true that is, and how rough this first dose was (which was expected, but still not fun).
We decided to go ahead and switch it up–my husband actually suggested it, but I was more than willing to comply, so we could figure out what the best method of handling this treatment and it's herxes is going to be. My second dose I took a day late, 4 days after my two drops from vial 1, and I'm now going in reverse order–meaning I'm starting with vial 10, and will go 10-1, that way I build up to the stronger doses (and still kill bugs along the way), so "unnecessarily-horrible herxing" is not the state in which I must remain 24/7/365.25.
Not every update will be this long; some may just be a short bullet list of what any given dose brings, some may just be a video, some may be a video with a sentence or two to say hi...there's no telling. But this one warranted its length, I felt, simply because I wanted to give as complete a picture of our process as possible (apologies if it's not completely coherent, or if it jumps around–I'm really just trying to get this info out there, because there are only a few places online where you can read/watch videos, testimonials, reviews, etc. of DesBio Series Therapies.
Remember, you can find joy, regardless of whatever you face on any gown day, you just have to make a conscious choice to find it and smile. I say this as a reminder to myself as much as anyone else. I'm not perfect at this practice, but that's okay, that's why it's a daily practice.
P.S. I don't think I've ever been quite so happy for my Burbur-Pinella combo tincture from Nutramedix as I was during the herxing from dose one. Y'all. If you don't have at least burbur, you NEED this miracle herx-reducer. I can't give you technical medical advice, so I'm not, but I can say the burbur, especially when combined with pinella (each is sold separately, but there's as a two-in-one product, which is what I usually use, just to get the great specific detox effects of both–I would go so far as to say it's a necessity for anyone with severe neuro effects from Lyme/co-infections), but honestly, I recommend it for everyone fighting these battles. The targeted toxin relief is unmatched by any other similar remedies I've tried (forms, at least, as long as I take it every 10-15 mins while herxing, as many times as needed throughout the day, to reduce symptoms and target the toxins released from the fighting-back/dying-off/dead bacteria. Just a little something I wanted to add.
Hey fellow warriors,
I shared this on my main blog page, but also thought it would be appropriate to include here, so it doesn't get lost if I, or anyone else, is looking for info on the topic in the future.
I know 2016 was a fairly quiet year for the site overall, and this treatment blog has been lacking in updates for much longer than that.
A few reasons this is the case:
- I fell behind and got intensely overwhelmed with anxiety every time I tried to think about having to play catch up with everything I've not yet shared. Rule number 1 of blogging: you don't have to share every detail. I'm trying to remind myself of that.
- Life, treatment, uncertainty, flares, herxing, planning next steps, trying to stay above water and keep my mind focused on God and His blessings amidst the trouble.
- Many days, I'm unable to type at all, much less use my laptop (leaving my phone/tablet as options, but arthritic hands cause problems there, too, and fatigue interferes with my ability to write, too.
- In the spirit of honesty, things are hard right now. Depression is creeping back in, along with many other mental and physical issues that have my mind in a perpetual state of anxiety, stress, and "fight of flight" thought-mode. But I'm not letting Satan win, notfonna happen. I have a CHH mixtape to record, mix, and release for free digital download–I know the emotional downs will pass, as will soke physical things, even if they seem to get worse before better, because it's all a process, and I have no room for hate in my heart if I truly want health...which includes hate toward any part of my circumstances or journey.
No, I'm not BFFs with my infections, diagnoses, and general state of dis-ease; I don't like any of them one bit. But I also won't give them the energy it takes to proclaim my hatred, or even hold it in my heart–they don't deserve any of my energy, except that which is directed towards treatments, detoxing, and other related things...for health.
So, here we are, facing many potential treatment decisions and in limbo in many ways, but one thing we do know is that we can no longer afford to keep bartonella on the back burner, hoping I'll just be well enough to handle the treatment and herxing one day.
The reason I didn't keep up with my treatment updates with the first attempt at the Deseret Biologicals (DesBio) Series Therapy for Bartonella (pictured above), which went from March-November 2015, is because the series–and subsequent herxing–was so taxing for my body, my neurological system, psychiatrically/psychologically, and hit me hard in nearly every other area of life, most of which I can't think to type out right now.
But, it was so rough that we never got past being able to take 1 drop/1x a week. One drop from one vial PER WEEK. If you've read mine, or others', posts on these homeopathic series therapies, you may remember they're designed to be taken one vial at a time, every theee says (with the exception of a few that are a few drops suspended in water to be consumed over an entire day, or other such routes, but this full vial every 3 days is the basic rule for many of them), so the box will last a month, and ideally you'll go through two the fire box vials 1-10, strongest to weakest, and then repeat this with a second month and a second box, in the opposite order, 10-1.
Since we know bartonella is my biggest issue as far as the debilitating symptoms it causes, and the sheer variety and severity and widespread nature of those symptoms and results/flares from the infections and herxes make it the most daunting infection to tackle...but as I said, we can no longer afford, in any sense of the word, to ignore this infection any longer, regardless of any herxing I may endure.
Number one goal for now: endure whatever it takes from now until the time comes, and whatever I may endure after, for however long it maybe, as long as I can be well-functioning and fulfill my Matron of Honor duties for all of my sister's wedding festivities this June–claiming that success in prayer, even though it seems a far off goal for now. I'm trusting God to deliver on that, because I refuse for these dis-eases, which are of Satan himself, to take away being able to support my sister and enjoy all aspects of watching and helping her as she marries the man of her dreams, her perfect soulmate.
For now, look for what I hope will be regular, or at least semi-tegular, updates on the treatment blog as I give this DesBio Bartonella treatment another go. It's in Your hands, Father, please grant me the blessings of peace, hope, and endurance–without you, I have none of them and none of anything.
God bless each and every one of you out there fighting, don't give up, even when things are hard and seem impossible.
There's always hope.
So first of all, since I'm posting this as we near the end of the first week of Lyme Disease Awareness Month, I want to wish everyone a happy awareness month! I hope you've been able to get the word out either in person, via phone, text, or social media, or at least that you've been able to follow some of the cool awareness stuff that has happened so far this month (and will continue to be happening across the country). I personally have been out of commission for the better part of 2015, but more on that on the main blog page later.
I wanted to do a quick update on the fourth round I did of the DesBio EBV series therapy. If you've followed my blog or have read past entries, particularly on the treatment blog, you know I started the EBV series over a year ago. A healthy person who has an acute EBV/mononucleosis infection could finish and entire round (one box, ten vials, one full vial every 3 days) in one month going from vial 1 to vial 10, and immediately take the second round the following month, going from vial 10 to vial 1, and that would be the end of it, they'd say goodbye to their EBV infection and get on with life.
Since my body is so fragile as far as being able to handle supplements, medications, or treatment of any kind, we actually started this treatment with me having to take half a vial every 5 days. As you can imagine, it was very slow-going because this was how we proceeded through at least the first 2 boxes. I can't remember off the top of my head if we went to half-vials every 3 days when I started the third box (you can check out my past entries on this treatment blog for more detail on rounds 1-3), but I do know that by the time I got up to vial 6 (I think) I accidentally took an entire vial and then we ended up finishing round 3 taking a full vial every 3 days. Since those last three vials were the weakest concentrated doses, though, and since I had still had some EBV herxing with vials 1-3, we knew we needed at least 2 more rounds (my doctor said we'll probably treat for 6 months after I stop having the EBV-related herxing altogether).
Here's the reader's digest summary of round 4.
DesBio for EBV, Round 4
Took vials 10-1, which is from the weakest to the strongest.
No EBV-related herxing from vials 10-3 (see previous EBV posts for descriptions of my particular EBV-related herxes).
Minimal herxing with vials 2-1. This basically took the form of fatigue and lack of strength, but I wasn't completely devoid of all strength for two days like I used to get with these vials.
Didn't really have much herxing as far as the EBV/mono no appetite problem goes (that was a biggie all throughout the first 3 rounds), but I haven't had much of an appetite lately anyway so even though I haven't been able to eat everything I should due to various reasons, as far as I can tell, it's not EBV-related (the EBV/mono feeling I'm talking about is one which would probably be recognizable to anyone who's ever had either...more of a repulsion at even the thought or sight of food, much less the idea of eating it).
So this is good on the EBV front! We're still going to at least do one more round, and probably a sixth round eventually, just to make sure, but we're so close to being able to check off this co-infection that I'd jump for joy and click my heels if I were physically able (one day...).
I started the DesBio Bartonella series in March and that's a huge reason why I've not been able to log on and post on the blog basically at all, but hopefully I'll be able to write a little bit about that soon.
Much love and God bless,
Okay, I've done a really bad job at keeping this updated, but it's been a roller coaster these past few months, and I feel like I've slept through at least 75% of January.
In a nutshell, here's my current progress with the DesBio Series Therapy for EBV.
FINISHED WITH ROUND THREE! Yeah!
If you don't remember (or haven't read the previous treatment blog update), a quick reminder that when I took vial 5 before Christmas I "accidentally" took the entire vial instead of the half-vials I had taken up to that point, and since I herxed very little from the full vial, I went ahead and finished the third round taking a full vial every 5 days.
Vials 8-10 were all very similar:
Mild EBV herxing: fatigue, but not nearly as bad as EBV fatigue usually is; lack of appetite for the first day or so after vials 8 and 9 but vial 10 I really didn't seem to herx much as far as the EBV symptoms go (vial 10 is the least concentrated dose, so that also makes sense).
I had an appointment with my doctor a couple weeks ago and I was given the go-ahead to do round 4 of the DesBio for EBV at full vial dosage AND normal frequency, meaning every 3 days instead of every 5 days. I'll be taking this round (hopefully my final round of the EBV series) backwards, from vials 10-1, and hopefully we won't have to do a fifth round for the EBV. The reduction in herxes throughout round 3 is an excellent indicator that we're getting the EBV buggers outta there! I've actually taken vial 10 already, and will be taking vial 9 today, but I don't want to update on those just yet because I've been having some major herxes from other things (the LDA injections I've mentioned before, I think, but I haven't expounded on them too much yet--I eventually will, I promise, but just know that I'm in the 30% of people who herx severely from them instead of the 70% who get instant relief for a while. This is always fun to discover--I've never been one to stick with the norm ;-) ).
Note: We likely will be starting the DesBio series for Bartonella within a couple of weeks. I'm actually kind of terrified about this series, to be honest, because as the EBV has been killed off, my Bart symptoms have become much more hyper-drive-ish (technical term) and thinking about the herxes is just too much to handle right now, so I'll stop talking about it and take it one moment at a time. The one thing I always have peace about (even when I'm lying in bed crying in pain or [insert symptom here]) is that God has me on the right path, with the right doctor, doing the right treatments in the ways my body can tolerate them.
Stay tuned for further adventures in treatment land.
Happy New Year (10 days late)!
I want to start by apologizing for not updating this treatment blog after the second half of vial 4 like I said I would in my last post. I'm sure you all understand, though--Christmastime, while wonderful, is also quite stressful due to the energy it requires to simply join my family in the living room (ie. get out of bed). I actually held off on my EBV series from Dec 22-Jan 2, just to give myself the best chance possible to enjoy (and participate in) family christmas time.
That said, since my last update I've finished the second half of vial 4 and also made it through vials 5-7. For a short synopsis of how each vial went, see below:
Vial 4 (second half)
This second half of vial 4 sill knocked me down (weakness, fatigue, nausea, just generally couldn't physically move) for the first day, but this is one of the first day-ater-dose days that I was actually able to handle eating (or drinking, rather) a smoothie. The next 4 days didn't sideline me as much as the first in terms of EBV-related herxing, although I was generally fatigued/achy all of those days (weather changes were a big factor) so I was still in bed, or sometimes out on the couch. How this half went was a good sign, we thought.
One word of advice: if you've discovered a certain way to efficiently perform a necessary task in regards to treatment, be very wary of suddenly trying something new. For instance, if you've always used a dropper to measure out half of your vials of EBV, don't indulge your adventurous side all of a sudden by convincing yourself you can pour half of the vial straight into your mouth and that you'll be able to stop once half of the solution is gone, especially if the vials in question contain a minuscule amount of liquid. Doubly especially if you have multiple chronic illnesses that both slow your reaction time and affect your perception and ability to judge things in a timely manner. I say this, of course, because I did this exact thing on December 20 and accidentally took the entire dose of vial 5 instead of the half dose I'm supposed to be continuing this round. By the grace of God, I actually didn't herx that bad from the entire vial. This was totally surprising! The way I can describe it is pretty similar to the a combination of both halves of vial 4, and noticeably better than any half vial dose from vials 1-3. This was a very encouraging sign!
Since Christmas and New Years were over, I decided to do something crazy.
(Note: I said AFTER New Years, so I'm not referring to any wild NYE partying. The hubby--who had bronchitis--and I had a low-key night here at home, watching X-Men first class on Blu-Ray, and, of course, New Year's Rockin Eve)
Anyway, since I didn't really herx much after accidentally ingesting vial 5 in its entirety, I decided to try taking all of vial 6 at once to see if my vial 5 reaction was a wonderful fluke or if we really are getting a lot closer to ridding my body of this EBV load. As far as herxes go I didn't notice much at all from vial 6, other than the standard fatigue and nausea. I did spend several days in bed after vial 6 but I've gotten really good at distinguishing how an EBV herx feels from how a flare/symptom presentation of any other kind feels, and I'm positive that the lasting fatigue on these days was because I was out of both my thyroid meds AND my adrenal supplement, which not only help with energy but help keep my blood sugar from dropping low enough that it causes problems. Some comparably mild nausea and fatigue related to the vial, but again I was able to stomach smoothies the first day, which is a step in the right direction. Thyroid and adrenal issues aside, this vial was one of the best-tolerated so far. (Remember, as the numbers go up, the doses get weaker)
Since I did okay with taking a full vial with vial 6, I decided to go ahead and do the same with vial 7, which I took this past Wednesday night. In a nutshell: Zero minutes of sleep that night, which always results in a required day of rest the following day, but as far as EBV herxes, I'm not sure there were any super notable ones. Due to lack of sleep, I was sidelined in bed most of Thursday, but thankfully I slept decently well Thursday night (after 2 couple-hour-long naps throughout the day on Thursday), and then Friday I actually had a pretty good-for-me day. Definitely thus far the easiest vial out of all three rounds.
So...there you have it! DesBio Series Therapy for EBV, vials 4.5-7. I see my doctor this coming Wednesday, so I'll complete vial 8 before then, but I'm not making any promises that I'll be able to update this before the trip because I've learned that my body is gonna do whatever it wants to do, whenever it wants to do it, often without warning, so planning/committing to anything specific isn't a reality right now. It drives my type-AAA, INFJ, obsessive-compulsive mind crazy to not be able to plan in advance, but there's no good that comes from dwelling on it so I just have to accept it for now and know that someday I'll be back to planning things again (although my planner will always have spots penciled in for relaxation, alone-time, fun, and self-care).
DesBio Series Therapy for Epstein-Barr virus, round 3, vials 1-3 (with brief summaries of rounds 1 and 2)
I totally wish I had started these in depth reviews earlier, but as they say, could've, should've, would've doesn't get you anywhere productive. So I'm just gonna start these reviews for the DesBio EBV series as I'm taking it now. I'm currently on round 3, meaning I've done two complete rounds from February till now, and I'm now on my third box of vials.
I'm taking this third round from vial 1-10, so the strongest to the weakest, and I'm still only taking half a vial every 5 days because holy herxes! These EBV herxes, as all herxes, are essentially a magnification of EBV symptoms (fatigue, weakness, no appetite, nausea, sleeping all day).
I actually will be taking the second half of vial 4 tomorrow evening, so I'm gonna try to summarize my experience with vials 1-3 in this third round, and then once I'm finished herxing from vial 4, I may update again. Depending on how much I have to say, though, I may keep updating 2-3 vials at a time. We'll see how it plays out.
But a short recap of my first round (taken over the course of mid-February through late May, vial order 1-10, strongest to weakest doses, 1/2 a vial every 5 days) and my second round (taken late May through late August, vial order 10-1, weakest to strongest, 1/2 a vial every 5 days) would be good to have just as a reference point before I discuss how this third round is going thus far.
Round 1: Basically every single dose in this first series had me herxing for days on end, even when I got to the weakest half-doses. For the first 3 days after each dose my fatigue was so severe that I couldn't leave bed, couldn't even move my hand to use a remote or phone, couldn't dress myself, had to be carried to the bathroom, slept all day long, had massive headaches, and wasn't able to eat or drink anything for three days (after the first day I was able to choke down a little water, but the absolute zero appetite that comes with EBV was so severe that even the thought of having to drink water made me feel like I was going to start vomiting. Thankfully, the last 2 days of the 5 day schedule I was able to eat as "normally" as anyone following the lyme diet can, and then once I took the next dose, all of this repeated. This lasted pretty much the whole first series. Vials 9 and 10 seemed to make me herx a little less, but I was still bedridden/couldn't function for 2-3 days with every dose in this first round.
Round 2: Compared overall to the first series, we saw a little improvement with this second series. Since I took the doses backwards this time around, from weakest to strongest, the first doses weren't as much of a shock to my system as the first doses of round 1. Once I got to vial 8, though, I was back to almost the same reactions I had throughout the first series, except with vials 8-5 I noticed that I was only completely bedridden with the above symptoms the first two days and then days 3-5 after each dose I was able to start eating light-to-normal-for-me meals before the next dose knocked me down. Doses 4-1 absolutely kicked my butt again, but even with that, vial 1, the strongest, didn't have me herxing quite as intensely for as long as I did in the first series. Again, I was out of commission for 2 days following doses, but then on day 3, even when we got back to the strongest vials, I was able to have my husband carry me to the living room so I could lie on the couch and watch TV or Netflix with him (I usually fell asleep, but this was still progress!).
Now, onto round 3!
This third series has been a truly crazy journey so far. I started the series in late September, a couple weeks after my appointment with my amazing doctor, and it had been about a month since I had completed round 2, which means I had done no specific EBV treatment for a month. Also, I completed my 30 days of 200mg of Diflucan around the same time as I completed round 2, so other than my daily supplements and detox, I had taken a month off of actual killing-buggers-treatment. But having the Lyme brain that I do (or perhaps just being a person who has always hated metaphorically treading water), I didn't think through the fact that things probably wouldn't go too well if I resumed taking the Diflucan AND started my third EBV series after being off of all actual treatment for a month. I quickly learned that is something I will never do again--the combination of Diflucan and half of vial 1 was enough to put me in a position where I was unable to eat or drink for 5 days (including water), and therefore ended up in the hospital to get fluids and keep me stabilized (discovered I have bad reactive hypoglycemia, as well). After spending the following 5 days in the hospital at the end of September, we decided to hold off on my EBV treatment for a while--largely due to the fact that I had a tooth extraction to take care of the trigmeinal neuralgia-causing jaw bone cavitation I've mentioned on my main page, after which I developed dry socket and it took over a month to heal/grow back completely. Obviously, since I was trying to keep that socket clean until it healed, I didn't exactly think swishing EBV around in my mouth for a minute would be a good idea. In fact, it would have been counterproductive and would have made the extraction pointless if I was just putting more bugs in the opening, and after the hellacious set socket experience (I'm prone to them, I've learned), I was NOT letting it all be in vain.
So again, the entire month of October, I wasn't able to continue with round 3 of the EBV series. I was, however, able to continue taking my Diflucan, which I now take once a week instead of daily (systemic candida is a pain in the you-know-what to get rid of, goodness), and I knew better than to take my Diflucan the same day I resumed round 3 in mid-November. Over the past 3 and a half weeks, I've taken the second half of vial 1, as well as vials 2 and 3, and the first half of vial 4 (which again, I'll report on vial 4 in its entirety later). The first half of vial 1 was similar to my other vial 1 experiences, but my complete unable-to-move, bedridden, can't eat herx lasted the first full day, and then by day 2 I was at least able to use my hand to press a button on the remote or my phone, or make an emergency call if I had to. I was still in bed the better part of 3 days, but I was more functional after day 1 as far as being able to hold my water bottle myself and get myself to the bathroom (even if it meant army crawling ;-) ) than I had been with any of my other vial 1 doses. it was a similar story with each half of vial 2, except the fatigue didn't last as long (still the entire first day after doses, but then by the end of day 2, I was able to actually prop/sit up in bed and choke down most of a smoothie, which was another huge improvement. Both doses in vial 3 were almost the exact same as vial 2. The appetite thing seems to have gotten a little better overall--I still don't ever feel like I have an appetite for the first 3 or so days after a dose, but I'm able to force myself to eat something small, or at least drink smoothies with protein powder, to get se nutrients, something I couldn't do with the first 2 rounds.
So in summation, yes, progress is slow, but it IS happening. To use a worn-out metaphor since it's 5:28am and my judgment is lacking from not having slept yet: this whole healing journey is a marathon, not a sprint. And even though the whole concept of taking things slowly--instead of being able to throw myself into the challenge head on with full-force Becca determination--is counterintuitive to who I am as a person, I've learned there's nothing I can do to speed up this process, and if I let myself get over-zealous and try to attack too hard at any given time, I actually run the risk of setting myself back further as far as treatment and healing are concerned (recall that little anecdote about 5 days in the hospital?). So I'm just gonna continue to take things at this pace and trust that God is doing His healing work in the time that He's already determined.
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!