After a few people recently told me they thought I had been doing better, I realized that my last medical update (which, at the time, had a promising outlook) was over a year ago - oops! I've honestly been wishing this all away just as much as most of us are wishing 2020 away. In some ways, it's just easier not to think or talk about it, especially when I know that no words will ever help others to truly understand what I'm going through. But I'm no quitter, so here we go.
Back to last Fall, when I first started my peptide journey. In the beginning, I had a small glimpse of progress. One of the peptides helped me sleep better than I had in over 10 years, which was amazing. For all you parents out there - remember when you got your first full night of sleep after months of newborn zombie life? That's what it was like. A few other peptides helped in decreasing my body pain enough to where I was able to join in activities with my family, which was also quite wonderful.
But sadly, the progress was very short-lived. And it wasn't for lack of trying. I injected myself daily, anywhere from 1-6 needles a day, for about 8 months. Even though the process got to be quite tiresome, it had very minimal side-effects, which was unlike any other treatment I had done so far. Out of all the peptides I tried, only one of them had given me a reaction, and even those weren't that bad - my skin became very flushed after injection, I was more tan at times (a positive in my book!) and it made me break out in moles all over my body (so weird). But other than that, the only other downside was how crazy expensive they were.
Unfortunately, the outcome was not what we had hoped, so in April we decided to give the peptides a rest, with plans to potentially revisit down the road. (Though I just saw my Doctor in August, and he shared that the darn FDA has recently decided to ban most of these peptides, like they have many other revolutionary products that are finally helping people like myself.) Not cool, FDA!
With COVID getting in the way, I went 5 months without seeing my doctor in-person. While phone visits sufficed in the meantime, this also meant no muscle-testing, which is what he uses to read what's going on in my body, what needs to be treated, and what supplements I need. In many ways, I've been feeling worse than ever, and all that time without treatment certainly wasn't helping. Three weeks out of every month I'm getting anywhere from 2-5 hours of sleep a night, 6 if I'm lucky. I've been nauseous and dizzy since March, and have experienced flu-like symptoms more times than I can count. I'm always fatigued - and not even so much from lack of sleep - just that the bugs drain every ounce of energy and life out of me. My pain level has increased and affects more of my body than ever. I never feel rested, or well, in any regard. On days that require any activity, I push myself through, and then pay for it for days.
One blessing out of all this 2020 nonsense is that it's finally given
me the opportunity to work from home. I can sleep until 8:30 if needed, which is especially amazing for the days that I don't fall asleep until 5AM. Aside from having the ability to stay on the couch with my heating pad most of the day, it's also been so helpful not to have to expend my energy on things as simple as getting fully made up each day. And as anti-social as this may sound, it's been so nice not being around other people, because it means the only time I have to fake health and normalcy, and plaster a smile on my face no matter how awful I feel, is when I'm in a zoom meeting.
In many ways, my job as an Event Director has become much more challenging during COVID, as I work to maneuver around all these new regulations, and come up with brand new ideas and processes for everything we do. However, the lack of back-to-back in-person functions has largely decreased the enormous amount of mental and physical stress my body typically endures.
It's also been great to be holed up in my house away from all the environmental stressors that typically make me so ill. No more car exhausts to drive behind, no more perfume or smoke or chemicals to waft through. And let's be honest, not leaving my house on the weekends is pretty normal for me, so aside from missing out on some activity and fostering the friendships we had just started to create, I could seriously get used to this way of living.
Back to the medical stuff. A few months ago, I made the decision to reach out to a local naturopath in an attempt to help balance my hormones, which is something I'm certain has been attributing to my chronic insomnia and weight gain (though Lyme is primarily what's throwing off my hormones in the first place).
The doctor intuitively recognized me as a "difficult case" and ordered a DUTCH test (Dried Urine Test for Comprehensive Hormones). Over the course of several days, I had to pee on paper strips - it kind of took me back to high school chemistry and those fun little litmus tests! (Although I promise, Mr. Murchie, I did not pee on those!) ;)
If you're in the same boat as I am, you know how thrilling it is to receive a test that comes back irregular - which mine did. Adrenals off the charts - extremely high DHEA production and metabolized cortisol, high estrogen levels, blood sugar issues, B vitamin deficiency, etc. This would explain, in part, some of my issues. It's not an easy or quick fix, but I've now added another large handful of supplements to my daily regimen in hopes that something changes for the better.
Next up, is my latest Lyme treatment. It involves taking a drug called Disulfiram - otherwise known as Antibuse. Some of you may recognize this as the drug that makes the user sick if alcohol is consumed (it inhibits the breakdown of acetaldehyde to cause a hangover reaction). Fun, right? It has been shown to be effective in treating and/or eradicating borrelia and babesiosis, biofilm, persister cells, and aspergillus mold.
So what does this entail? Obviously, alcohol needs to be avoided - so no Quarantini's for me! When my doc 1st introduced this idea, I wasn't too concerned about eliminating alcohol, because for years now, I've only had drinks on special occasions - maybe a few times a year - since my body tends to skip over the lovely buzz stage and go straight to the not-so-lovely hangover one. But I didn't realize how many of our everyday products contain alcohol?! Topical products like lotion, soap, shampoo, deodorant, skincare. Some vinegar products contain alcohol - which means avoiding things like condiments, salad dressings, even soy sauce. Other foods that contain acetaldehyde and could cause issues - coffee (NOOO!), melons, citrus fruits, artificial flavorings and many more. Fermented foods and carbs should also be avoided. A lot more daunting than eliminating a tasty beverage, that's for sure.
While disulfiram has a low risk profile, it does have the potential to create some serious, possibly lasting, effects. For one, it can cause damage to the liver. Not good. A majority of patients report neuropathy - and some even say that this hasn't gone away even after they've stopped taking the drug. Yikes! Less severe side effects include fatigue, sleepiness, nausea, sulfur-like body odor (thank goodness for lockdown in this case?!), acne, headaches, weight gain, metallic taste, rash, constipation. There is also risk of depression, and many report that this actually happens after stopping the medication, as the drug increases dopamine levels. Not great news considering so many in this position are already dealing with depression on some level.
Effective dose and duration of therapy is unknown. As is, of course, whether or not this will even help me. So as with nearly everything else, it's a total crap shoot. I could be taking it for 2 months or 8 months or even years - I have no idea. Because certain treatments are so new, and because each person reacts so differently, there is no good gauge for what to expect. Like with most treatments, the key is to start low and go slow - particularly for patients like myself who's bodies are poor detoxifiers, inflamed and super sensitive. The goal is to stay on the drug for a course of several months (or more) once your target dose is achieved, but target doses are based on both weight and tolerance, which is why the journey to reaching said dose is trial-by-error and different for everyone.
Most of us in the Lyme community rely heavily on our chronic illness Facebook groups - both for support and for information. You'll find so many different groups for each kind of treatment (Bee Sting Therapy anyone?!). It is very helpful to read through others' experiences, and to ask the group questions. With that said, it is also extremely overwhelming. Not only is there more information than my already-anxious brain can accommodate in one sitting, it's also very important to remember that patients tend to post bad experiences or an ask for help with their symptoms, rather than the ones who are having success and don't need help (or have left the group altogether). Through my findings so far, some report that they've noticed improvement while taking the drug, but many have said that they didn't start feeling better until they were done with the treatment and off the drug (and still others report it not helping or just making things worse).
With all that said, it was a relatively easy decision for me to move forward with this treatment, for two reasons. 1) It is very affordable, especially compared to other treatments, because it's covered by insurance - $20-ish per month versus the $200 (or $2000!) per month I have paid in the past. 2) I just can't bring myself to pass up trying something that could finally be my "breakthrough" treatment.
Still, I did have some reservations. For one, I've been dealing with neuropathy for many years, but over the last 7 months, it's been absolutely horrible. Both hands and feet are numb ALL the time - to the point that I sometimes experience panic attacks from it. I can't sit in one place for more than a few minutes without the numbness intensifying and growing up my arms and legs. I have to change positions in bed constantly to stay "comfortable" and my daughter can only snuggle with me on the couch for a short amount of time. I can't imagine that getting worse. My other major hesitation is the potential for more weight gain. My body has absolutely blown up in the last few years, to the point that I don't even recognize myself in the mirror anymore, and I don't feel like I could afford it to get any worse - both physically and mentally. Ultimately though, I decided that the risks would still end up being worth it, if the drug helped me get back to living a decently normal life.
So I've been on Disulfiram for a little over a month now. It has not been the hottest hell that I've been in, but it's certainly no picnic. It seems as though the drug is both magnifying all my previous symptoms as well as given me some new ones. My insomnia is even worse than before and I feel flu-like way too often - fever, sweating, fatigue. I've also accumulated some not-so-fun stomach issues.
My nervous system is much more sensitive than normal and the neurological symptoms are seriously no joke. There is an incredible amount of pressure in my head that's unlike anything I've ever experienced, and nothing helps to relieve it. It comes with a constant buzzing of sort, like my brain is a live-wire that won't turn off. Every little noise is like a hammer to my head...which is especially hard when you have a rambunctious almost-4-year-old at home, and you're living in a development surrounded by neighbors who seem to spend all their time doing loud outdoor projects, with an airport and a military base down the road.
Along with this head hell comes constant dizziness and nausea. It almost feels like there is an ocean in my head, with a tide that won't stop moving. In the last 6 weeks, I've only had a few days of relief from all of this, and it's making life incredibly tough. Some days are worse than others, especially when I accidentally let alcohol slip its way in. For instance, the first weekend in, I pushed myself to make some french toast for the fam....and well, I used vanilla extract without even thinking about it. Earlier this week, I had my hair highlighted, and felt like my stylist was spinning me around in her chair. I've recently reached out to my FB group and some have told me that I need to go even slower than I already am with the doses. Others say there is a supplement that may help with the head symptoms and someone else mentioned that it's very possible I have ammonia toxicity in my brain that I need to manage. I sure hope something will help because I don't know how much longer I can live with this!
My pain has certainly gotten worse as well - I feel like I've been hit by a bus every morning I wake up, the bottoms of my feet always feel like I've been standing for 10 hours straight, the pressure and pain in my legs is so bad I can hardly stand for longer than 10 minutes, my kidneys often throb like someone used me as a punching bag, and the usual searing & throbbing in my back and hips feel like someone got their knife sharpener out this time around. As far as the neuropathy goes, I have experienced a bit of burning in my hands/feet/arms/legs on top of the numbness, but so far it hasn't been as bad as I feared it would be. However, that doesn't mean it won't happen once I ramp my dosage up. I do feel like I've gained about 20 more pounds already, whether it's inflammation or water weight I'm not sure, and I swell very easily which is surely attributing to the leg pain. In some ways, it's like I'm living the 1st AND 3rd trimester of pregnancy all at once. I'm forced to limit my activity to 1 or 2 things a day because they are so difficult and painful to accomplish...even the simplest of things like cooking dinner or putting laundry away are really tough to do. I'm definitely apprehensive for when the time comes to ramp my dosage up - at this rate it seems like a worsening of symptoms is inevitable.
Managing all of these herxheimer reactions can be a full time job in and of itself, and detoxification is incredibly important, though that's easier said than done - especially for people like me who have MTHFR. It's recommended to detox 2-3 times a DAY, at the very least, if possible...which it's not for those of us with full time jobs. Though another great thing about working from home is that I can do some of these things throughout the day that I wouldn't be able to at the office. For instance, I recently purchased a sauna blanket, and I'm able to do a 30 minute treatment a few times a week while still working!
Starting this treatment during lockdown is probably a better time than any, because I'm also not forced to turn down social invitations. FOMO is not as strong a feeling these days. :) I've powered through a few activities and small get togethers this year - but most of it has been with my family members, who understand what I'm going through more than most. Though I've come to realize that I automatically put on a front even with them. Last month, my husband and I celebrated our 10 year anniversary by going out to dinner. It was good to get out of the house and spend time together, as we very rarely get to, but the whole time we sat at the restaurant, I was sweating profusely, in pain, and felt like I was going to puke.
It really sucks that this illness is taking the joy out of life for me, but I hate even more than it's affecting so much of my husbands life, as well as my daughters. Though I will say this. Seeing what others are going through this year during these unprecedented and chaotic times, I'm still so grateful for what we do have, and I try to remind myself of that every day.
Despite that though, it’s definitely challenging to persevere, particularly when there seems to be no end in sight. But we must move forward, and move forward we will.
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