Tuesday, February 23, 2021

News From Our House: Tests, Treatments & Improvement!

It's been a long time since I've written one of these personal updates on my blog because I've been waiting until I had full information to share with you.  I have that now and can tell you about my 11-month-long crash and the tests and treatments that are now leading to improvement. Note that I also recorded a video, Tests and Treatments and Improvement, for my new YouTube Channel with a summary of this post, so if you'd rather listen/watch me explain it rather than reading (or in addition to), just head over there.


The couch where I spent most of 2020!

2020: My 11-Month Crash

2020 was a terrible year for me but not for all the same reasons it was terrible for the rest of the world. It didn't matter to me that everything was closed and cancelled and I couldn't see friends or family because I was far too debilitated to do anything anyway. Around mid-March last year, all of my ME/CFS symptoms suddenly worsened considerably, for no obvious reason. I had no energy, struggled to get up in the morning even after sleeping 10 or 11 hours, had horrible flu-like aches almost every day, and worst of all, had completely lost all of my hard-won stamina. Even the slightest bit of activity left me feeling even worse the next day.

Regular readers of my blog know that I was in pretty good shape before that; 2019 was a good year for me, in a string of good years. You can read more about my illness history on the Our Story page. Thanks to a variety of treatments, by 2019, my energy was quite good, I had mostly good days and crash days had become rare, and I could live a relatively active life with almost no post-exertional crashes (within limits but those limits were much broader than they'd been before). Then, 2020 hit.

By May, still exhausted, aching, and on the couch or in bed most days, I called my ME/CFS specialist and told her what had been going on. We both agreed it was likely that some sort of infection had triggered this crash, so she ran some tests to look for common culprits. Because of the immune dysfunction at the heart of ME/CFS, underlying infections have a huge impact on us and are constantly cropping up. COVID-19 was, of course, a concern, given the timing, but my antibody test then (and another one last month) showed I had not been exposed to it. The two infections that did show up in May 2020 were adenovirus (a very common virus that causes a mild cold in most people but could certainly be a trigger for someone with ME/CFS) and HHV-6, a common infection that gets reactivated often in people with ME/CFS (along with its sister, Epstein-Barr Virus, EBV, which is better known) and pops up often in my own lab tests. We treated the HHV-6 with Famvir, a prescription antiviral. However, after five months on it, I had experienced only very mild, minor improvement. Something was still very wrong.

My Lyme Disease and 2020

By the end of 2020, I decided to make an appointment with my son's Lyme specialist to see if she had any ideas for me. Lyme is also nothing new for me. I first got Lyme disease in 2008. Tick infections now occur in every state, country, and continent (except Antarctica) and are very common in those with ME/CFS. I treated mine with a few years of antibiotic treatment and then switched to herbal protocols that were gentler on my system but still effective. Since about 2012, I have considered my Lyme disease to be "under control." Every 2-3 years, it flares up (I can tell by the sudden onset of joint pain and nausea), I treat it with the herbal protocol for a few months, then it seems to go dormant or back into remission for a while. If I'd been paying more attention, I'd have noticed that the times in between flares were getting shorter and shorter, and some new symptoms cropped up, indicating progression.

So, in December 2019, my Lyme flared up again; my knees began to hurt, I got nauseous, and I knew it was back. I resumed treatment and was pain-free again within a couple of weeks (the way it usually works for me). As usual, I stayed on the herbal treatment for a few months. This time, though (damn that 2020!), every time I tried to stop the Lyme treatment, the symptoms returned within days. So, by the end of the year, I decided to meet with my son's Lyme specialist to see if she had any new ideas for me, to treat the infection more effectively. I had read an interesting study from Johns Hopkins about seven herbs that they found more effective than classic antibiotic treatment for Lyme, and I wanted to ask her about those.


My Visit and the Start of Improvement

At that very first visit with her in January, the Lyme specialist let me know that I wasn't taking the maximum dose of my current herbal treatments, which I didn't realize. She advised me to increase the doses (and by how much). As for the Johns Hopkins study, she knew about it and told me she did use most of those herbs with her patients, so I started on one of them within a week, Japanese Knotweed, one of the two they deemed most effective against Lyme at Johns Hopkins. As with everything, I started with a super low dose and moved up gradually, as I was able to tolerate more. When I started it and each time I increased the dose, I had a very mild Herx reaction (a temporary worsening common when treating infections like Lyme disease and reactivated viruses), which is an indication that it was working. 

I was shocked when I began to feel better almost immediately! With just these very minor tweaks--increasing the dose of what I'd been taking for over a year and adding one additional herbal supplement--my condition started to improve. Now, about a month later, I am almost back to my "normal" baseline! My energy has returned, the flu-like aches disappeared almost entirely, and I went back to mostly good days, with a mild crash day here and there. Best of all, my stamina began to return; I could walk again and go to the grocery store without crashing the next day.

I was stunned! All this time, I had assumed that my Lyme flare-up was a minor factor in that 2020 worsening and my 11-month-long crash. Now it appears, it was actually a significant factor--and maybe even the major underlying cause.

At the end of that visit in January, they took a lot of blood and ran dozens and dozens of lab tests, to try to get to the bottom of my worsening and find out what other infections might be lurking behind the scenes. 


Tests and Treatments

Here's a quick run-down of what my tests showed and how we're treating these issues:


This one was a surprise! I'm well aware that many people with ME/CFS have thyroid issues (the immune dysfunction causes endocrine dysfunction), so my primary care doctor usually checks my thyroid function every year, and every year, it comes back normal. This time, the lab tests show low thyroid function (known as hypothyroid). One important point to note: Many doctors only test for certain thyroid measures, which may miss some thyroid dysfunction. I looked back at my last thyroid test, from two years ago, and saw that my doctor only tested TSH (thyroid stimulating hormone), which was normal. In fact, my TSH was still normal this time, but the lab ran a full thyroid panel, and my T3 and T3 uptake were both low. So, everyone with ME/CFs should have thyroid function tested frequently, but be sure your doctor orders a full thyroid panel. Even low-normal results can benefit from treatment.

Treatment: I started taking a low dose of thyroid hormone a few weeks ago (after I started noticing improvement from the Lyme treatment), so it is probably contributing to the overall improvement of this past month.

Immune Function

Two immune measures came up abnormal (in this case, very low). I have had both of these tested before, they have both been low before, but neither has ever been treated directly (beyond the general immune modulators that have helped us so much).

CD57 - low

CD cells are a part of the immune system, involved in the creation of Natural Killer (NK) cells, which are known to typically be low in ME/CFS patients. CD57 specifically fights against Lyme disease (and some other infections). Mine is very low, which means my body can barely fight off Lyme anymore; there's nothing left! Running a CD57 test is actually an alternate way to check for Lyme disease, since testing of the infection is so very unreliable; a low CD57 can indicate the person's immune system has been fighting against Lyme. Mine came up low previously at least one other time, in a 2010 test.

Immunoglobulin M (IgM) - very low

I had a full immunoglobulin panel run, and most of mine came out normal. Immunoglobulins are antibodies produced by the immune system to fight off infections and diseases. Only my IgM came up low, but it was very low. IgM are the first antibodies a body makes when fighting a new infection (some tests look for infection-specific immunoglobulins, where IgM would indicate recent or new infection and IgG would indicate older infection). This means that my body is barely making any antibodies when confronted with new infections right now! This also makes it unlikely that I would make many antibodies if I got the COVID-19 vaccine right now (more info on the vaccines for those with ME/CFS here).

Treatments: She recommended I start with two treatments, which will both help to heal my intestinal lining. Since 70% of our immune systems are in our GI tract/gut, the first step to improving immune function is to heal the gut. I am going to start Mega Mucosa and SBI Protect as soon as they arrive (my visit was via the phone, so they are shipping my supplements to me). My son took both of these for a while when he had severe GI problems. Yes, I know they are each fairly expensive, but the hope is that I can heal my gut and improve my immune system, and then I won't need them anymore.


There weren't a lot of surprises in terms of infections. As I mentioned above, it is very common in ME/CFS for old, dormant viruses to get reactivated. So, I tested positive for:

  • Epstein Barr Virus (EBV)
  • HHV-6
  • Parvovirus
  • Chlamydia Pneumoniae (a bacteria)

These are the usual suspects, and I have tested positive for them in the past (including the positive HHV-6 last spring), but not usually all at once! This is another sign that my immune system is just not fighting back right now. Also, Lyme disease--just like ME/CFS--causes old viruses to reactivate, so that is a double-whammy. Again, it seems now, with all this information, that the Lyme disease was perhaps the underlying cause of last year's worsening, and then the domino effect kicked in, and multiple systems began failing, allowing other infections to flare up also.

Treatments: We decided to focus on herbal antivirals, since I just took a round of prescription antivirals last year, and they didn't seem to do much, plus I have a variety of infections flared up, and while herbals have a broad range, prescription antivirals are very specific to the virus being treated. My son and I both already take several herbal antivirals every day: monolaurin (a component of coconut), olive leaf extract, and emulsified oil of oregano (we take oregano in that form so it won't upset our stomachs). All three of these have antiviral, antibacterial, and antifungal properties, so we take them for a variety of reasons. Interestingly, since I figured viruses were probably behind the scenes, I increased my dose of olive leaf extract (from 2 every other day to 4 every day) in January, and I saw an improvement after that. So, she suggested adding one more antiviral to the daily mix: L-lysine. We've taken that before, and I still have some here, so that's an easy one (it's inexpensive, too).

And, for Lyme disease, I will continue to increase my dose of the herbal treatments I'm already on, and slowly and gradually add in a couple more.

Last week, I felt so good that I was able to take a walk six out of seven days, go to the grocery store, spend 90 minutes dusting, and even help my husband with shoveling snow one day (all while wearing my heart rate monitor and resting when the alarm went off), with no crash after any of those activities! That pretty much brings me back to my "normal" baseline, where I was before the Year of Horror began. With this kind of stunning improvement after just a month, I am feeling very hopeful and optimistic. Who knows? Maybe I'll even end up better than I was before 2020! If I can get the Lyme disease under control and improve my immune system with these treatments, then that's a very good possibility.

Remember, there is a video available on my new YouTube Channel if you'd like to hear/see me explain all of this.

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Doug Gawoski said...

Hi Sue-
Thank you sharing your story as we try to figure out the cause and treatment for CFS. I also had CFS and found Inosine helpful. Have you tried a biofilm treatment protocol?

Sue Jackson said...

Hi, Doug -

Glad you found inosine helpful, too! It's an essential part of our immune system treatments.

Yes, my son and I both treat biofilms as a part of our Lyme/tick infection treatment. I take Biofilm Defense, in addition to my other Lyme treatments (A-L Complex, Samento & Japanese Knotweed). What has helped you with biofilms?