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

The Pandora Lyme Box

*I wrote this back in July 2015. But all is still relevant, if not more so. When there are over 300,000+ new cases of Lyme a year across our nation, why aren’t the CDC and IDSA doing so much more for the population at large? And why aren’t these organizations being held more accountable for their actions or lack of actions. #LYMELIESCOSTLIVES

Hi out there! Today I listened to the Diane Rehm show and if you caught it as well, it was a program about Lyme disease. Honestly, it didn’t shed any light on the disease for me personally and yet again, some of the guests continued to perpetuate some of the Lyme disease myths floating around. Now granted, I am not a scientist, I am not a researcher, and I am not a doctor. But I am one of the many suffering from this disease so I have read as much information as I can get my hands on about Lyme and I will continue to do so. At this point in my game of Lyme, I feel like I know enough to make fairly decent decisions regarding my own care.

Listening to the program and reading comments on Rehm’s FB page really struck a chord with me in that there are so many people out there suffering from the elusive Lyme bacteria, Borrelia burgdorferi (B. burgdorferi). And so many of us are not even close to getting the help we need. The medical community is at odds as to what to call the condition where patients suffer symptoms of Lyme after treatment; it is also at odds with whether the bacteria is actually present after treatment or not. On the show, Dr. John Aucott from Johns Hopkins Bayview Medical Center basically agree that yes, in rare cases, patients still suffer from symptoms after treatment but he would not call it Chronic Lyme. He sidestepped this so many times…well anyway. Instead, he made it clear that if, and only rarely, patients have lingering issues, it is due to an immune response but not due to persistent bacterial infection. He stated this as a fact when in reality, this has not been proven as not true in a human subject.

**The two awesome posters above are from a wonderful website and patient advocavy.Please visit http://www.lymestats.org

But how do we even know or how can we even begin to dismiss the idea that this bacteria, one of the most, if not the most, complex and intelligent bacteria we know of, cannot persist? Just because we do not have the means or the way to find out should not lead then to dismissal. I think back to things in the past that were dismissed and then later, after the technology and testing and imaging came to pass, after the WAY to see something became clear, we changed our minds because we actually had the TOOLS to figure it out? Now I am not necessarily trying to make direct analogies here but think about this: women used to be treated as mentally ill if they suffered certain symptoms after delivering a child. Ever read “The Yellow Wallpaper” by Charlotte Perkins Gillman? But then as years went on and doctors focused and researched, this “condition” turned out to be a physical one and not merely a “mental” condition we now call postpartum depression. The same comparison be said about depression in general. We didn’t know what it was, we know now, we know it can be hereditary….and on and on.

I just cannot then figure out why the medical community, in this country for sure, is so fixated on sticking to standards set by IDSA, the Infectious Disease Society of America, in 2006. Like many of us, I wonder why more money has not been put into finding out so much more about a disease that is now affecting 300,000 plus here in the states? I just cannot wrap my head around it!

SOURCE: http://nocturny.deviantart.com/art/Pandora-s-box-340317104
SOURCE: http://nocturny.deviantart.com/art/Pandora-s-box-340317104

I know I live in a bubble, don’t get me wrong. I have yet to have anyone in my life doubt that I am still suffering from something, no matter what the terminology. Not everyone has that kind of support system. Why don’t more medical and science professionals care about Lyme? Or why are they staying away from researching Lyme? Let’s just say that the radio show today did not answer any questions for me. In fact, it only made me think about more questions I have about Lyme disease! On that note, dearies, I must take leave of you.

Until we meet again, peace -B