My Update: Crashes, Infections, and Treatments ... Oh, My!

I am way overdue for a personal update on my health here, but I just haven’t had the energy for the past four months … which I guess says it all! Here’s an overview of what’s been happening, what I’ve learned, and what I’m trying to resolve it. I’ll try to keep it brief!

The Downturn

First, back late 2019, I couldn’t figure out why my left hip was hurting. I couldn’t remember injuring it, my massage therapist wasn’t able to help, and it took me months for the lightbulb to finally go off: my Lyme disease was back, flaring up again! That’s a whole story in itself, but the quick version is that I got Lyme way back in about 2009, and ever since then, I treat it and it goes into remission for awhile and then—probably due to the immune dysfunction of ME/CFS—pops back up again every few years. Usually, I know immediately that it’s back because of sudden-onset knee pain (I don’t normally have any pain issues, other than the flu-like aches of an ME/CFS crash) and nausea. This time, it surprised me with the left-hip pain, so it took me longer than usual to realize what was happening. Lyme works that way—with joint pain that can sometimes hop around from one joint to another.

So, around January, I restarted my Lyme treatment; I use a tincture called A-L Complex from the herbal Byron White protocol. I began to feel better pretty quickly, and the hip pain went away, confirming that it was indeed Lyme disease rearing up again. I felt good—at my normal baseline--in February and into early March, continuing the treatment (it came back this time after only 18 months, so I was determined to treat it more completely). Then the pandemic hit in mid-March, and we hunkered down at home, not that much different from our normal life. Soon, though, I began to go downhill.

From mid-March until recently, I was in a crash but couldn’t figure out why (that sort of unexplained crash is extremely rare for me now, thanks to treating immune system dysfunction). I was worn out all the time, had no energy, and was very achy at times. I kept waiting it out, but the crash wasn’t going away. I suspected that perhaps I’d been exposed to COVID-19 way back at the beginning without realizing it. After all, that’s probably how any of us with ME/CFS would react, right? By crashing badly, even if we didn’t “catch” it and get the common symptoms of it.

By May, I was no better, so e-mailed my ME/CFS specialist in NYC. She agreed with my theory that there was probably some infection behind the scenes, so she sent a lab slip for COVID-19 antibodies and also for some other common viral culprits for people with ME/CFS.

What I Learned

I had a phone consult with her after my lab results came back, and we were both a bit surprised by the results. My COVID-19 antibodies were negative, so that probably wasn’t the trigger (I have since heard the antibody testing isn’t all that accurate). However, I did test positive for adenovirus, which is … the family of viruses that cause the common cold! That was a surprise to both of us (and later, to my primary care doctor) because I rarely catch colds, and I had been at home for most of the past three months, other than an occasional trip to the store with a mask on! But, there it was. Maybe I’d been exposed before the pandemic, and it was still hanging around, due to the immune dysfunction of ME/CFS. 

The other test that came back positive was for HHV-6. This is a herpes-family virus in the same family as EBV (Epstein-Barr), CMV, VZV, and others. These viruses are common culprits that cause trouble for those of us with ME/CFS. They are all very common in the blood of most healthy adults, but most of us are exposed as children (and get chicken pox or mono or other viral illnesses) and then the viruses go dormant. With the immune dysfunctionof ME/CFS, though, they are prone to getting reactivated. This means that the immune system begins to react to them again, causing the typical crash symptoms we are all familiar with. Since both ME/CFS and Lyme disease can cause these dormant viruses to reactivate, it is likely that’s what happened with me this spring, perhaps due to the combined effects on my immune system of my Lyme recurring and being exposed to some random cold virus. When I first started to see this specialist years ago, my HHV-6 numbers were also high in my initial testing.

Treatments

Back in 2007, when the doctor first noticed my reactivated HHV-6, we treated it with antivirals. I tried a brief round of Valcyte (valganciclovir), but it was too toxic for me. I ended up alternating between Famvir (famciclovir) and Valtrex (valacyclovir)—both mild antivirals that are effective against herpes-family viruses--for about five years. At the time, my viral numbers were positive but not super-high, so my corresponding improvements were modest but definitely noticeable. I stayed on the antivirals for so long because I got Lyme disease about a year into the antiviral treatment, and both the ME/CFS specialist and my Lyme doctor agreed it was best to stay on them until the Lyme was under control, since it is known to reactivate viruses, too.

So, we decided to try the same approach this spring, with just a short course (6 weeks) of Famvir to get the HHV-6 back under control. I started that at the beginning of June, and … I could hardly keep my eyes open for the next two weeks! I would sleep for a solid 10 hours and wake up still exhausted, barely able to drag myself out of bed, and was so wiped out all day that I was useless.

 

After far too long, I finally realized this was a Herx reaction! This is what happens when you treat infections—especially those that have been around for a while—and you get worse before you get better. The antivirals were killing off the HHV-6, and a bunch of dead viral material was flooding into my bloodstream, causing my immune system to think it was under attack (again) and over-respond. We deal with Herx reactions all the time around here, when treating my own Lyme and my son’s tick infections, but it took me a couple of weeks to figure it out!

My mistake was in jumping right into a full dose—one pill a day—of Famvir, so I took a break for a few days until I started to feel better and then restarted it at a much lower dose. This is whatI advise other people to do all the time, so I felt pretty stupid for not taking my own advice! I am now taking just a half pill every 3-4 days. That’s about right for now, and I will gradually increase the dose as tolerated. I am able to function again and have even been able to resume my morning weight workouts (some days) and short walks. I lost a lot of stamina the past few months, but I am working to get it back, little by little, As with everything else with this crazy illness … baby steps!

I wanted to share all this with you because underlying infections are a huge problem for patients with ME/CFS and are often behind our unexplained crashes. Anyone can see an ME/CFS specialist like I’ve got; there aren’t a lot of them, so most of us (including me) have to travel and go outside our insurance networks or national healthcare programs. It’s really the same everywhere right now, unfortunately. Luckily, all of the top experts are used to working with patients long-distance, so most are happy to work with you via e-mail and phone (like I just did) after an initial visit. It is well worth the effort and cost to see one of these specialists, if you can manage it because treating underlying infections (which is just one of many treatments they can offer) often dramatically improves symptoms. Check out my Find a Doctor page for more information, including a list of top ME/CFS experts in the world.

I also encourage you to check out my post on Treating Immune Dysfunction in ME/CFS because the three treatments outlined there are all inexpensive, readily accessible (some you can even try on your own, without an expert), and have resulted in enormous improvements in all symptoms for my son and I. Because of those three treatments, these kinds of random-seeming crashes are rare for both of us now, plus we both feel better every day and can be more active without crashing.

So, that’s where I’ve been the past four months and why I haven’t been posting as much as usual! I can sometimes manage a movie or TV review or a short inspiration post, but I am way behind on research updates and other more complex posts that require brain power! But I am feeling better and coming back to life again, and I hope to be posting more again soon (after a short vacation with our sons next week).

I am happy to be able to take walks again!