This feels a little surreal to write. The title isn’t 100% accurate, I’m slightly over halfway through, but I have made it through my half vials without having to lower or skip a dose. As a reminder, in the past, I was only able to get 1-2 drops max before the herxing was intolerable and I was making no progress because of my body’s inability to detox.
The past 2 and a half weeks have definitely been full of herxing–it’s been nearly constant, with a couple brief reprieves, and we’ve also been dealing with significant grief in the house as we had to say good-bye to our grey tuxedo cat, June, 8 days ago. (I won’t write much about this now because I don’t want to cry, but we’re slowly going through the grieving process, but that’s added to the overall stress on us both, mentally and physically, so I wanted to mention it. The house doesn’t feel the same, and this is coming from a person who didn’t realize my dog-person self had become a dog- AND cat-person, until it was too late to enjoy my time with her. But that doesn’t even hold a candle to the loss Roger is feeling, because he was her entire world, and in many ways, she was his.).
More on the nature of the herxes below.
Today, Sunday November 10, I took half of vial 6
As I readjust to the constant herxing nature of this treatment (I still wholeheartedly think it’s one of the best out there but I legally have to say I’m not a doctor, just a longtime fighter, who has tried so many meds, supplements, herbs, IVs, procedures, and so many other therapies and treatments over the past...well, a very long time. Also, this is 100% not sponsored, I just truly believe in this treatment), I’m learning that either:
1.) I’m much better at enduring these herxes and pushing through these half-vial doses–even though the pain and other symptoms seem insurmountable at times right now–simply because I’ve had to learn to endure what I thought many years ago would kill me, but hasn’t.
2.) The IV antibiotics and the antimalarials did enough in the 6 months to knock down bacteria to a degree, and that is also helping me endure half-vial doses and subsequent herxes, whereas in years past, I was only able to take 1-2 drops at a time, every 5 days, instead of half a vial (~15 drops?) every 3 days, as mentioned above.
REGARDLESS, we know one thing is true:
N-U-T-R-I-T-I-O-N has absolutely been a key factor, regardless of what else has contributed to my ability to endure.
And, of course, all credit goes to God regardless of the other factors, because He put them all into motion. After all these years (15+) of fighting anorexia, I’m finally in a kind of-decent place in recovery even though triggers can still send my mind into a pretty dark place, but I’m rejoicing for the lifesaving GJ tube that has kept me alive and helped me regain much needed (100% unintentionally and NOT ED-related) lost weight last summer before we discovered gastroparesis.
I’m not happy in the disordered way of “Oh yeah, I’m sick enough to need a feeding tube,” but rather in the “Thank you, Lord, for a device that can help me until my body can once again absorb adequate nutrients orally” way ... and I can’t wait till that day now that I’m slowly making recovery progress.
As far as the herxing goes, it’s been all over the place. One vial may trigger more nerve pain and trigeminal neuralgia flares along with more intense than usually eye and ear pain, one vial may result in GI herxing: bloating, distension, and I’m pretty sure there’s some kind of small sentient being living in my intestines, making roaring sounds at will. Sometimes I’m flat in bed, unable to turn over due to joint pain, and others my herx manifests in the form of an extra headache or migraine that forces me to keep my head under the pillow.
Basically, there’s no rhyme nor reason yet, and that’s because I’m still readjusting, and the wide array of herx symptoms occurs because of the sheer variety of symptoms Lyme and co-infections can cause. So I’m detoxing as much as I can (burbur and pinella, activated charcoal, coffee enemas, dry brushing, etc.), and just taking it and making it one day at a time.
Two weeks ago tomorrow, Rog and I had a car date night, went and saw the autumn leaves, and sat at the park for a while (in the car). He got out for a bit to let Lucy look around the dog park, but it got cold fast and I ended up wearing down, but it was a night full of laughs, which was needed with the unexpected weekend that was ahead of us.
Tuesday, November 6, through a lot of pain and tears (and medication and supplements and kratom pain relief), I was able to physically go with Roger to the polls and vote!
We then seized my brief adrenaline burst and immediately went to shop for our Operation Christmas Child shoebox items. I lasted about an hour total on Tuesday, and even though it was painful and I was pushing through fatigue, I enjoyed the time with Rog...and he goofed off a bit while shopping.
Other than that, you can find me here in bed or at the doctor’s office. We travel to Tennessee on the 28th for an appointment on the 29th, so we’ll see how everything’s going by then. Trusting God the whole way, even when it herx...uh, I mean...hurts. ;-)
Happy November, friends! I can’t believe it’s already November–2018 is almost over! Also, I’ve been listening to Christmas music off and on for a solid two and a half months...no judging allowed. It’s happy music, so I choose to listen to it, and often at various times year-round.
But I’m getting off track. Today, I want to share with you something I also posted on my @lymeislame Instagram feed. It’s something I plan on doing all month. I don’t know if I’ll be able to post it all here, so if you want to make sure you see it all or if you want to just follow along (or join me!), you can do so over on Instagram.
Below is the text and explanation from my Instagram post, which I used to caption the picture above.
I’ve never enjoyed the “30 days of thankfulness” challenge so many do online each November. I got jaded over the years I was on Facebook, and honestly, it got a little annoying at times. I don’t say this to insult anyone (you do you!), but I won’t to do something just because society says I *should* be doing it on social media. No siree.
Anyone want to join me, friends? Whatever this challenge looks like for you, I urge you to consider just adding a daily thankfulness practice to your life, even if it’s just a quick mental note. There’s always SOMETHING for which we can be thankful.
Stay thankful, my friends.
I promise there’s a person under all of that gear–it just takes that much to get out of the house.
I have spent most of the past two weeks flat in bed, no pillow, in the dark, as still and quiet as I can be. I’m not able to even fake my former/best writing style right now, so I apologize if this is bullet pointed.
2 weeks ago today, I had an appointment with my Lyme doctor. (Reminder, I’m back with my former doctor, and no longer seeing Dr. Jemsek–I wrote about this a few posts back, I think).
At that appointment we learned many things:
- I’m still very anemic, despite iron supplementation. I was hoping this would have gotten better once off antibiotics, but it’s obviously a deeper underlying issue. This could explain my can’t-move fatigue.
- The EBV we were scared was reactivated is DORMANT! That was a bright spot for sure!
– My CD57 (which we just use as a marker) is still in the chronic Lyme/very low range, so that confirmed what we already knew: we still have a way to go to treat Lyme and co-infections, which I’ll come back to in a moment.
- I also received the low doses of the LDA mixes for foods and inhalants while there. (Subcutaneous injections)
- We got a referral to a specialist for help with something specific, but I’ll delve more into that at a later date.
– Yesterday I saw my PCP in town and got a referral to Ohio State University’s Otolaryngology department for a suspected chronic, undiagnosed CSF (cerebrospinal fluid) leak. We’re waiting to hear from OSU. This could explain a lot when it comes the the nature, intensity, and frequency of my headaches (2,100 days and counting). If not, they should have the tools to see what else may be going on physiologically at this point, because while we still need to treat Lyme and friends extensively, we know there’s more going on, as well. With this and in other areas.
– Today, I restarted the DesBio Series Therapy for Borrelia-Babesia (I’ve done the DesBio series therapies for chronic active EBV, which was obviously successful, as you can see above! I’ve also tried it for Borrelia-babesia and bartonella in the past, but my body wasn’t able to respond to to treatment at the time, and we’re hoping solid nutrition will make all the difference this go-around, because I truly do believe it’s an excellent and effective treatment). I took my first dose this morning, and throughout the day my joint and neck pain, along with headache, have steadily gotten worse, so maybe a herx has already started to rear its head. Eye pain and photosensitiviry are coming out to play more, as well.
The last time I did this treatment, I was taking one drop at a time, and this time I was told to start with half a vial (equaling several drops). These remedies are very strong, but I’m abandoning all preconceived notions based on past reactions, and hope to be able to report back as often as I can.
I know there’s more, but my brain fog and inability to keep typing mean it’s time to end this for now.
i apologize for any typos, my eyes can’t proofread in this moment.
We are hopeful! And letting God carry us through.
God bless you all,
It's OCD awareness week, and since this is something which which I have a lifelong struggle, I wanted to share with you an expanded version of something I shared on Instagram yesterday evening. It's always my goal to be transparent and honest, and to let you all in to the reality of life with chronic illnesses, the ups and the downs and the in-betweens, but that applies to mental health/illness as much as it does to physical, especially when I know there is a link between Lyme and co-infections (particularly Bartonella) and psychiatric conditions. I'm in no way saying my OCD was caused by the infections, because I had a genetically loaded OCD-gun, ready to fire at any moment, but there is a strong correlation, and it plays a role in deciding how we approach my treatment for Lyme and friends.
Please never, I repeat, please never use the phrase “I’m sooo OCD” in reference to liking to keep your things straight and tidy, liking to be organized and clean, or even simply preferring things be a certain way.
The statement is not only dismissive and reductive, but it is actively harmful in minimizing the struggle so many fight every day, often behind closed doors for fear of judgment, whether it is the intent or not. The statement itself also makes no sense, whatsoever.
Which brings me to:
2. Have you been diagnosed with OCD by a professional? Does OCD interfere with your every day life or limit your ability to function? Is it sometimes debilitating because you can never do something the “right” amount of times, do something the “right” way, say the exact “right” thing in any given moment, meaning you miss out on life because you feel the urgent need to perform compulsions to calm the constant stream of chaotic obsessive thoughts in your brain? Do you live each day with a looming sense of, “If I just make sure I do X perfectly, the Y bad thing won’t happen. It’s up to me. I have to do it perfectly right, otherwise the terrible thing will happen and it will all be my fault!”?
If not, please don’t use the the phrase in a casual attempt to describe common idiosyncrasies many people share.
It’s cool that your organized.
It’s cool that you’re clean.
It’s not cool that I’ve avoided all cracks in all sidewalks since I was 6 years old. As a kid, I had to do it because it “felt right” and I knew something bad would happen, but I didn’t yet have specifics. Around age 14, I remember the specific bad thing started to most often be the death of a family member. I couldn’t risk the lives of my family by hanging stepping on a crack. And it was, and is, so much more than listening to the old playground rhyme about breaking your mother’s back (although, to be fair, I worried about that before the death thing overtook my obsessive thoughts).
Two separate years of my life, one in high school and another in college, saw me washing my hands, often 30+ times a day, with straight Clorox bleach, scrubbing them raw. I remember the deep sense of embarrassment and shame as I stood over the sink in my college dormitory, sobbing, unable to stop scrubbing my hands and arms, because the bleach wasn’t working “well enough.”
I also always carried my own plastic utensils, toilet seat covers, etc, during these times, and was unable to sit on upholstered furniture. I even sometimes chose the floor over a couch or chair, because unless the furniture was plastic/ceramic (school desks)/easily cleanable, my mind reasoned that the floor was safer. If it was a “good” day, I could take a towel with me to therapy and use it as a barrier to cover the chair, sitting only on the edge of the seat for minimal contact, even though I had used my towel to cover the chair. Sometimes the floor still won.
I mention this to highlight the fact that OCD is irrational in its very nature, but if you know someone who struggles with OCD, and specifically if s/he struggles with contamination or cleanliness obsessions or compulsions, what s/he does and how s/he chooses to do it may not always make sense to you.
Regarding that, all I can ask of you is to please respect us, and believe us, and when something comes up that seems contradictory to another thing we may have said or done, yet we are still dead-set on doing something the way we feel it has to be done before we can move on to the rest of our day, know there is a connection in our minds in which the compulsion makes sense and must be performed. And, even when we recognize the illogical nature (I’m fully aware my obsessions and compulsions are not logical), that doesn’t absolve us from the need to perform the compulsions, because OCD is an irrational illness by definition.
I don’t think my family really believes me when I say I blame myself for the death of “my person” (my great aunt). On New Year’s Eve 2012, I was so worried about the next 365 days. I was dreading living 365 days in a year that ended with the the last two digits of the year after 2012.
That night I expressed my concern over 7 family members, none of whom were seriously sick at the time, saying I was scared one of us (I was one of the seven) would die due to the year number. Midnight struck, leading us into January of that year, and with little to no warning, she died in mid-February. I didn’t get to say goodbye while she was still alert, and I missed the last call she made to my cell phone the day before she went to the hospital unconscious (never to regain consciousness before dying a few days later), because I had finally been sidelined by Lyme and co-infections, and I just didn’t feel like picking up the phone. Never did I imagine it might have been my last chance.
I’ve been physically paralyzed, literally unable to move, from fear and tears and and terror and anxiety, more times than I can remember, due to OCD.
There is so much more to my story. This barely scratches the surface of what living with OCD looks like for me, but these are a few instances that stick out in my mind, because they are as fresh in my mind as if they were all happening yesterday. (As is the counting. I've counted everything my entire life, which is why I can tell you it was 537 steps from the Hard Rock Cafe to our Toyota Sienna when we visited Broadway at the Beach on vacation, the summer after fifth grade.)
On a daily basis, my mind is still a battleground. My OCD has played a major role in my 15-year battle with anorexia, which is a daily fight in itself, but the OCD as its own entity, never leaves. I’ve gotten better at “managing” it (meaning I’ve learned how to do my compulsions efficiently much of the time, so there’s minimal interference with my day), but my mind is almost always chaotically stressing out over an obsessive thought, often made worse by my physical inability to perform some of my "necessary" compulsions, due to chronic illness.
Exposure and Response Prevention therapy is perhaps the most studied/popular treatment method to address OCD directly, but it has never been the key for me, and I've tried it extensively. Some people also drastically improve with either psychotherapy, natural/alternative interventions, or prescription medication, but the latter most of those is something I was on for a decade, and I never saw a difference in my OCD (and boy, did we cycle through just about every available led before I realized my body/mind just doesn’t respond to them, and the side effects weren't worth the lack of efficacy).
QUICK NOTE: If you are struggling with OCD and you feel like nothing has helped, and if you think medication may be an option you want to explore, I am not discouraging it. I do think that America is overmedicated as a nation, but that does not negate the value of medications that can actually help some people regain real control over their lives, so whichever path(s) you choose to manage and treat your OCD, I want you to know that you have permission to do whatever you need to do to live your life as unencumbered as possible. Society, stop the stigma.
I would venture to say many people living with OCD, like myself at times, have mastered performing their compulsions so well, you may not notice that’s what they’re doing in the moment. But even those who can keep it under “control” (I know it’s not really under our control, but I’m talking about managing, as described above) still likely have times when it feels so overwhelming and crushing to even exist with these thoughts, and accompanying actions.
While OCD can sometimes be very obvious (as in excessive cleaning rituals and other obviously noticeable compulsions), unless you know the subtle signs, it's very possible the person next to you at work or in school or on the bus is fighting a mental battle so chaotic they couldn't put it to words if they tried, and you could know nothing about it, which means OCD, at times, can also be classified as an invisible illness.
Some OCD fighters are successfully treating with any number of the methods I mentioned above, along with others I didn’t directly address, and I always have so much joy for those who have reached that point. The point where it no longer keeps you from living, and enjoying, your life. My heart overflows with genuine, heartfelt joy and happiness for anyone who is able to wake up and defeat this monster every day, going on to thrive instead of scraping by and just existing.
I know it’s possible to get there, so while I’m not to that point yet, I have faith that one day, I will be. Because God is greater. For now, I'll approach it just as I do my physical health battles–one day, one moment at a time, clinging to that faith, until deliverance comes.