an update without much of an update…

When we last left off on our mysterious-fatigue-related-illness-could-be-Epstein-Barr-Virus adventures, I had been taking an antiviral for several weeks to see if that improved the fatigue, sore throat, swollen lymph nodes, body aches, ear pain, and tinnitus I had been having. Because I didn’t notice any drastic improvement, I stopped the antiviral after 30 days and started the antibiotic my dentist had prescribed to see if there might be some underlying bacterial infection going on somewhere.

After finishing the prescribed course of amoxicillin, I didn’t notice any difference at all. However, on the positive side, I didn’t have digestive issues while taking the antibiotic, which always happens. I’d like to thank the MCAS strangers on Twitter and this histamine-free probiotic for the smooth sailing.

After talking with one of my chronic illness blogger friends (shoutout to the lovely autoaylie), I decided to check COVID antibodies to make sure I wasn’t dealing with a mild case of long-COVID. To my knowledge, I am one of the fortunate few who has managed to remain COVID-free, but at this point the answers to my current health question aren’t rolling in, so I’m looking for things to rule out in the meantime. My concern was that the antibody test would be positive due to antibodies I created in response to the vaccine, and I still wouldn’t be able to tell if I ever had an active infection. However, my friend informed me that there are actually two COVID antibody tests – the spike and the nucleocapsid tests. I had both tests done at Quest Diagnostic labs and will list the Quest name for each test below, if you’re interested.

• Spike test: The COVID spike test (Quest: SARS COV 2 AB (IGG) SPIKE, SEMI QN) identifies whether an individual has antibodies to COVID, regardless of the source. So, a positive spike test could mean antibodies from a prior infection or from the vaccine.
• Nucleocapsid test: The nucleocapsid test (Quest: SARS CoV 2 AB (IgG) NUCLEOCAPSID, QL), on the other hand, only shows antibodies from a prior infection.

Both of my tests were negative, meaning I have no detectable antibodies of any form in my body. It has been over 18 months since my last vaccine, so I guess that provides some kind of estimation on how long antibodies from vaccines last.

A few people have suggested that my symptoms could be a vaccine-related illness, but I think that’s unlikely.  There are case studies of people developing POTS and other illnesses after COVID vaccines (and lots and lots of other vaccines as well) and I absolutely believe that, although uncommon, vaccine-related illnesses and injuries do exist. So, my hesitancy isn’t based on denying that vaccines could cause these symptoms, but rather on the fact that my last vaccine was over 18 months ago, and I have only had these symptoms for 6 months.

The sore throat has mostly resolved. The ear ringing and joint/muscle pain haven’t improved, but also haven’t worsened. My swollen lymph nodes are no longer painful, but occasionally feel like they’re putting pressure on other things in my neck. The fatigue isn’t awful – I don’t need to nap constantly – but I miss my standard POTS-fatigue, compared to whatever the hell this is. It’s like a mild flu that doesn’t go away. My symptoms are tolerable enough that at some point, if we don’t find any cause, I’ll debate whether it’s worth continue to pursue answers, or whether it’s time to just accept this as life. Not quite there yet, so not quite ready for that discussion.

I saw my primary last week and she ordered an ultrasound of the lymph nodes in my neck. I have about 8 swollen lymph nodes that were continuously growing for a while, but have stayed relatively the same size for about a month now. I don’t expect the ultrasound to reveal anything other than swollen lymph nodes, as I clearly don’t have cancer, but I appreciate that she’s trying to cover all bases. She also referred me to a rheumatologist. My primary thinks it could be fibromyalgia because I have a lot of widespread tender point pain, but that has been true for years. So, again, I don’t expect anything to come out of it, but the referral is a logical step in ruling things out. I haven’t always been in love with my primary, but I appreciate that she’s trying. At the appointment she even admitted that she didn’t know what was going on or what to do next. She said it almost as an admission of failure, but I respect the vulnerability it took to admit that. I told her I don’t expect her to know everything. If she believes me and she’s trying, we’re good.

Naturally, because I like her and she’s turning into a good doctor, she won’t be my doctor anymore. I just found out she’s moving. So, now in addition to being on the lookout for a new POTS cardiologist (or neurologist), I’m also on the hunt for a new primary.

And that’s it. That’s where I’m at. Pretty much the same place as the last time I wrote, but with fewer ideas and a longer to-do list.

We all come from randomness. We exist out of uncertainty. Out of near impossibility. And yet we exist. So, when you feel the odds are against you it is important to realize that they are never so against you as they were when you didn’t exist. And there you are, we are, existing. – Matt Haig

Happy Thanksgiving, to my American friends!

Smell ya later.
– Linds