This week has been absolute HELL; the worst I've had in quite a while. I've probably cried more in the last week than I did in all of 2020. That may not be saying much since I've seem to have hardened my emotions over the years when it comes to all this stuff - but I guess that means if I'm crying, things are really quite bad.
Rolling it back a bit....I made the decision this month to stop my treatment with the Disulfiram (Antabuse). I had been on one of the lowest doses possible (31.25mg) for five months, and was never able to progress because of how miserable it made me. Nearly every minute of every day since starting, I've dealt with neurotoxicity - incredible pressure and pain in my head, and a dizziness unlike any other I've experienced (and I've experienced a lot). Most days, the dizziness also meant nausea. On the worst days I could hardly walk straight; another good reason that I'm working from home and not having to be out on the road! I also never saw any sign of improvement from the DSF. I kept pushing because many have noted that improvement for them didn't start until after the treatment was over.
I had noted in my first post about Disulfiram how inexpensive the treatment was - which I've now come to find isn't incredibly accurate. The drug itself is covered by insurance (nearly unheard of for most Lyme treatments) but the money I was spending to combat my symptoms was another story. Just one of the many things I took to help alleviate the side effects cost me $200/month. It helped at first, but the benefits wore off quickly. Though because I struggled to afford the upkeep, I also didn't take it as much as I should have.
I had many flu-like days, which is typical for Lyme, but I'm sure the drug was mostly responsible. I never had a sip of alcohol, but it turns out there were many other things that affected me in the same way. Coffee always made it worse, and though I was able to limit my intake, I couldn't bring myself to completely eliminate. I quickly learned to avoid things that contained extracts (vanilla etc.) and sugar. I bought natural deodorant and checked the ingredient list of every product I put on my body. But there were still times that I still to this day have no idea what caused the negative reactions.
On Christmas eve, I came down with the "flu" mere minutes after eating some appetizers. Body sweating, zapped energy and strength, headache, lethargy, and body pain so deep and intense that the only Christmas gift I really wanted was a morphine drip and a heavy sedative. I struggled big time through present opening, and ended up in bed a good part of the night and through Christmas day. I still have no idea what set me off.
As you can imagine, since it's really tough to work a full time job under normal circumstances - it's even harder under current ones. Luckily for me, I have years of practice of working through the worst of symptoms. I'm pretty sure a "normal" person would be calling in sick even on my easier days. I thank God every day for this opportunity to work from home, as it is a huge blessing. I‘m also lucky to have a boss who understands what I’m going through, as much as one can who doesn’t have Lyme, who allows me to take the time I need when things get really bad.
It's also tough to manage life with a 4 year old. Telling her that mommy doesn't feel well means almost nothing to her - she still expects me to do what she wants, regardless of how little I can bring myself to move off the couch. We've talked a little about my illness, and she says that "mommy's back hurts like her teacher's does", but her little mind still can't really compute the gravity of it all. She's definitely a ball of fire most times, but she also has a super sweet side that likes to "take care of mommy" by rubbing my back and helping me organize my medicine each week. I'm sure it won't be until she's an adult that she realizes the sacrifices and struggles I went through for her...as I'm sure can be said for every kid :)
Anyway, well informed DSF patients know that when it comes time to get off the drug, titrating is essential. Aside from typical herxing issues, Disulfiram affects dopamine levels - and coming off of it too quickly can cause some serious depression. Even though I was on a super low dose, I know my body can be very sensitive, so I weaned off slowly for a few weeks' time. Once I stopped, my neuro symptoms completely vanished - thank God for that relief!
A week later, I visited my LLND. His tests showed that I still had some significant brain inflammation, so we did a "Crown of Thorns" neural therapy treatment - which is injecting procaine all around my head. The areas that are really inflamed make a crunching sound (and feeling) when the needle is inserted - it's really quite cringey, and also very painful! This time was crunchy all around. But I felt some head clearing immediately after, and felt pretty good for the following week - back to my baseline of just the "normal" Lyme crap.
Then shit hit the fan. I woke up on Monday morning with my neuro symptoms back - noooooo!!!! Every day thereafter became progressively worse. By Wednesday, I was enduring the worst head pressure in all of the 5 months of treatment. I also began experiencing horrible anger and depression. I literally felt like I had a demon inside of me; everything little thing made me so extremely angry and I felt lower than I have in a long time. The littlest things made me cry - even things that would normally evoke no emotion whatsoever.
Lyme rage is a very real thing, and it's awful to lose such control over your body. I've done things that I normally would never think of doing - including some violence and destruction - and it's a scary thing. This is commonly caused by one of the coinfections - Bartonella or Babesia, I can't recall which one at the moment. Anger can also stem from a struggling liver. DSF has been known to cause liver problems, so this would make sense. It also lingers in the body for a long time (weeks to months) so this could be something I'm dealing with for a while.
Thankfully the anger and depression has dissipated, but the pressure, pain and dizziness has not. And then yesterday, out of nowhere, I was hit with the "flu" again. This time was even worse than the Christmas one, and the all-encompassing, bone-crushing pain was even more unbearable than before as well. It's so awful during the day that all I want to do is go to bed, but once I'm in bed, I can't sleep because of the pain. The only time I get any relief at all is when I'm in an epsom salt bath. Needless to say, I've gone through over 30 lbs of it in the last few weeks. If I could live in the tub, I probably would.
So, yeah.....I completely lost it yesterday. I'm SO EFFING TIRED of living this way. I just want it to stop, and I feel like it's never going to. You can tell me to hang in there, that something has got to give, that I can't give up hope - but 13 years of this bullshit is more than enough.
I realized recently that I've now been seeing my current Lyme doc for 3 years. In my first meeting with him, he said to "give him a year," that it may take some time to start seeing improvements, but that we could get there. And here I am, in many ways, worse than I was when I started. And that's how it always goes. A new doctor is hopeful they can help me, but then they realize how tough of a case I am, and often end up being at a loss for how to treat me. I've mentioned before that I've had several doctors tell me that I'm their toughest case - out of hundreds of patients at least. Every single time we've tried something new, I get worse. Even the little things that normally don't affect patients, or that typically make them feel better, make me herx. I can tell my doctor is just as frustrated as I am. I try not to let it get me down, but it's getting tougher to let it roll off my shoulders.
I'm seeing on Facebook just how many patients are having success with Disulfiram (and many other treatments), and I just want to scream, "why not me?!" At the same time, I know I'm not the only one in this boat, but the boat sure feels lonely over here.
Anyway, I've had a few things working against me this week. Aside from being in the process of stopping DSF, it's also a full moon which always wreaks havoc on my body, at the very least for 2-3 days, and it's that special time of the month where my hormones make everything worse as well. On top of all that, I'm in the process of beginning a new treatment as well. The beginning stages are supposed to be extremely gentle, but I suppose I should know by now that doesn't necessarily mean it will be the case for me. So it's a quadruple whammy and, really, no wonder I'm a hot mess.
In my last post, I mentioned seeing a new provider who practices homotoxicology/bioenergetic medicine. About a month ago, I mailed her a hair sample and a cheek swab. It's pretty crazy cool what science can do. Here are my results:
Most of the toxins are ones that I was already aware of, but it's still nice to see confirmation through another type of testing. Some of them were a bit surprising, but just goes to show what kind of nasty toxins are incorporated in our environment these days. In addition to seeing what exists in my body, the test results also showed her how deep each toxin is within my cells and how long I've had them. Insane!
The results also produced some graphs like this that don't make much sense to me, but she explained that it shows how much of my body is clearly very taxed. She noted that my central nervous system, adrenals and joints are all particularly bad.
The first step before attacking these toxins, is to spend a month getting my body primed for treatment. I'm about 1.5 weeks into the process, and seemed to be doing fine at first, until the previously mentioned crap hitting the fan. As with anything, adding multiple variables makes it difficult to decipher what is causing the problems. I was pretty convinced up until yesterday that the Disulfiram was the culprit. But then when I took a dose of the new stuff yesterday morning (mostly made to combat inflammation and help the body detox) is when I got hit with the horrible flu. So now I'm just confused. My best guess is that all of the above are to blame.
So here I am, just a week into the new process, and I'm already having to hit the brakes - from a "gentle" phase of pre-treatment that my provider says normally does not cause such issues. I'm frustrated, sick & tired, and feeling more hopeless than ever. It sure didn't take long to dash my 2021 "new year hope". At this point, I feel like the only way I'm going to feel better is when I get to heaven and my pain and suffering is wiped away - what a glorious day that will be! But I sure would like to get there before then. I feel like it's time that I deserve some freedom from this hell - as does my husband and daughter.
Thoughts and prayers appreciated to get me through this!
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