Hanging in There?

How it going on Disulfiram…

I’m not sure where the time has gone. With school closures in March, my SO and I were working every day trying to keep up with the changing directions for remote learning. I’m really not sure why/how time has slipped by so fast!

Without a true final day for the school year (at least for teachers), I didn’t actually segue to summer until like maybe the beginning of July. And now, we’re waiting patiently to hear if/how our district will deal with the beginning of school which as of today is August 24th. As teachers, we’ll be back earlier but we’re not sure in what capacity.

It’s a lot to think about and with things changing daily at the state level, I’ve just tried to opt out right now. There’s no sense stressing over something that might change tomorrow.

While I honestly was not a fan of remote teaching overall, it did give me an opportunity to keep my health in decent shape. I actually was feeling good with only a few lingering symptoms hanging on. There were still days where I would have flares I guess I would call them, but they were few and far between. I was able to do things most of the day, hitting a wall about 4-5 p.m. with a short period of resting.

However, back in May, one of my LLMDs suggested trying out Disulfiram because of my lingering joint pain, sleep issues, fatigue. And after doing some of my own research, I decided I would try it out.

I’ve been on a super low dose for about 2 months now. I was rolling right along with no issues and I was thinking, well, what’s the big deal? Nothing is happening. I started to doubt that it was working at all. And then, bam! At the end of June, I had about 3 full days of feeling like hell. I spent most of those days in bed. All kinds of symptoms were going on fatigue, headache, joint pain, stomach issues. I wasn’t worried about COVID because these were all too familiar to me.

Since then, I’ve felt somewhat better. Symptoms kind of come and go so overall, I’m not feeling great. I had a phone appointment with one of my doctors last week and the doctor said yes, everything I’m dealing with are side effects of the Disulfiram at work. It’s stirring things up and killing bacteria. With the die off comes the symptoms if the body can’t keep up with detoxing. Sounds crazy, right? But it’s called a herx. I’m starting some new supplements that will hopefully help with this process.

Overall, I’m having a bit of a tough time dealing with this both physically and mentally. Physically, I’m trying to keep things stable and I’m trying to listen to my body when it tells me something like I need to lay down. This has been somewhat of an adjustment after these past few months of feeling better and being able to not worry about not feeling well every minute. So an adjustment for sure. Mentally, it’s been kind of messing with me. I feel like I’m being thrown back into being sick all of the time (I mean I’m chronically ill but I was on an upswing), and it’s both scary and depressing all at once. My main goal is to try to remind myself that This Too Will Change. And damn, it’s hard! But things have changed before and they will again. If I’ve learned anything with this disease, it’s that for sure.

Now, you might laugh because after all of this, I’ve decided to switch from one doctor’s protocol with this medication to another’s whose approach is a bit more assertive. This means that in another week, my dose will increase, and so too perhaps will the herxing. Now, I can always, always lower the dose if things get too crazy. Why not stay on the super low dose? Because that means I will have no change in dose for 3 months straight. And from everything I’ve read, dosing should increase periodically. There are other reasons, but I’ll leave it at that for now. So, ironically, I’m pretty much doing this to myself!

However, people really are seeing results from using this medication. People who have suffered years and years with Lyme disease. It took me awhile to decide whether to do this or not, and if I’m going to do it, I want to try to maximize results. Wish me luck!

I hope all of you are doing well and staying safe out there. Happy weekend! – belle

Fire in the Hole

Fourth
Fourth

Well, I certainly haven’t been diligent with posting. Just a quick update, I’m still having issues with my lower back. Insurance has denied a lumbar MRI. Doctor exploring possible colon issue, possible pinched nerve, and a few other things. The pain is bearable, and I just don’t have the gumption to fight the insurance on it. My kidneys are good and they were my main concern. However, I have had all kinds of other check-ups and doctor visits just to make sure the rest of me isn’t falling apart: eye doc, dentist, general doctor. All of those visits have turned out just right. None of this is an excuse for not posting!

Hopefully, all of you enjoyed the 4th of July weekend. We had plans both Saturday and Sunday, but Lyme played its card, and it was a doozey. One positive is that since I have been having better days, I can really feel the herx when it comes on. I started feeling under the weather on Saturday. I honestly just chalked it up to a busy week; I actually was doing things a “normal” person might do! Running errands, grocery shopping, doctor visits. It was all kind of amazing. I haven’t been up for much of any of that in a really long time. Last summer I had a PICC line so I was somewhat limited in my scope. I also didn’t feel really great most of the 5 weeks I was dosing. Anyway, by Saturday afternoon I was in bed with a headache. My husband had to go to our friends’ party by himself but he was very understanding and that helped me not feel so cruddy.

By Sunday though, all was lost. I woke up about 3 a.m. and felt so nauseous. I managed to slip back to sleep for a few hours but by 6 a.m. I was up. Everything was hurting. Joints, head, tummy. Oiy! I took a hot Epsom salt bath and went back to bed. Yet again, we had to cancel with friends. But I just couldn’t even “suck it up”!  I mean, have you ever felt that kind of nausea where you just do not want to move because it makes it worse? Yes, that was my Sunday in a nutshell. I was literally in bed all day long. And no reading or anything productive. The little a/c window unit on high, the curtains drawn, and the heating pad on full blast was what my day entailed. I finally crawled out of my cave about 7:30 p.m. and ate some corn on the cob.

Today is better. I’m exhausted and my stomach is still making some strange noises but overall, I feel like I am going to make it. I really thought I was doing a decent job on detoxing but maybe not so much. I am just so grateful that it is summertime, and I can manage this disease a lot easier and without inconveniencing a bunch of people. Of course, I am sorry to have missed all of the fun with our friends. Trying not to beat myself up about letting people down is a real struggle for me, as I am sure it is for all chronic disease warriors.

Again, I hope this was weekend you were able to make some great memories, – B