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:

Hypothyroid

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.

Infections

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.

Please Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.

 

ME/CFS and the COVID-19 Vaccines

PLEASE NOTE: THE INFORMATION IN THIS POST IS RELEVANT ONLY TO THOSE WITH ME/CFS, A UNIQUE AND COMPLEX IMMUNE SYSTEM DISORDER.

Probably like most of you, I have been thinking about the COVID-19 vaccine ever since the first ones were available. I'm still not yet sure what I will do when it becomes available to me, but now, finally, I think I have the data I need to make a good decision for myself.

Upfront, I want to emphasize that I am a proponent of vaccines, and my kids got all of their required vaccines when they were young. However, ME/CFS is an immune disorder, and that complicates things for us. This post contains all the information you should need to make an informed decision for yourself, too.

ME/CFS Immune Dysfunction

Plenty of studies have confirmed that the immune systems of people with ME/CFS are dysfunctional; they don't work the same way that they do in healthy people. It's a complicated dysfunction, though, that doesn't fit neatly into the usual categories of autoimmune (where the entire immune system is over-active) or immune deficient (where the entire immune system is under-active). In the case of most people with ME/CFS, parts of our immune systems are over-active, while other parts are under-active. You can read more about this in my post Immune System Abnormalities in ME/CFS.

How Vaccines Work and How That Affects ME/CFS

Vaccines are designed to stimulate the immune system; that's how they work. They trick your immune system into thinking it's been exposed to an infectious agent so that your body will produce antibodies to fight it off. Then, later, when you are exposed to the infection the vaccine is meant to prevent, you already have the antibodies against it. This doesn't always mean you won't get any symptoms when you're exposed, just that your immune system will have a head start in fighting it so that your symptoms (if any) will be much milder and not last as long. As an example, when they started vaccinating kids against chicken pox, some kids still had mild symptoms (perhaps a mild fever and a few small pox for a few days) when exposed to the virus later.

Since people with ME/CFS have immune systems which are already partly over-stimulated, this means that with any vaccine, there is a chance that the extra stimulation to our immune system will result in a crash or worsened ME/CFS symptoms. It's not the vaccine's fault; it's doing exactly what it was designed to do. But for those of us with dysfunctional immune systems, the result may not be exactly the same as for healthy people.

Further complicating matters is the fact that there are different kinds of vaccines, including some that use live virus (rarely used now) and some that use inactivated virus (see that link for more types and more info). The COVID-19 vaccines from Pfizer and Moderna (the two currently available in the U.S.) are a new type, a mRNA, or messenger RNA, vaccine. The mRNA is injected into our bloodstream and gives instructions to our cells to create harmless pieces of "spike protein," a protein found on the surface of the virus that causes COVID-19 (SARS-CoV2). That triggers our immune systems to begin making antibodies, which will protect us against future infections. You can read more about this type of vaccine and how it works on the CDC website. The Astra Zeneca vaccine from Oxford (currently the most common one used in the U.K.) and the upcoming Johnson & Johnson vaccine are adenovirus-based (an adenovirus is one type that causes the common cold). That means it uses the virus--considered harmless to most people but a potential viral trigger for those with ME/CFS--to get the vaccine into your cells. This article explains how those two types of vaccines work and this article compares all of the COVID-19 vaccines currently available (and coming up). Finally, it is important to note that experts currently estimate that the COVID-19 vaccine will provide protection for only six months to a year. This means that, like the flu shot, people will need a new one each year.

I highly recommend reading ME/CFS and FM Experts on Whether to Take the Coronavirus Vaccine by Cort Johnson of Health Rising, who has a great talent for doing all the research and making it easy for patients to understand. His article includes lots of information, plus opinions from several of our top ME/CFS experts.

So, no one really knows for sure how people with ME/CFS will react to the vaccine, since it is entirely different (but not unknown - that CDC link includes past research and experience). However, anything that stimulates our immune system is likely to cause an ME/CFS crash: the question is how bad and for how long?

Our Experiences

Our own experiences (mine with ME/CFS for 19 years, my older son for 17 years, and my younger son for 10 years, now recovered) mirror the scientific findings that I describe in that post on immune abnormalities. We all have evidence of over-responding to allergens (both environmental and food allergens), over-responding to viruses, and under-responding to bacterial infections. This means that in 17/19 years, my son and I have very rarely caught a cold or flu because our immune systems fight off viruses, though just being exposed to a simple cold virus can cause a virally-triggered crash for us. This means that we don't develop symptoms of the virus, like congestion or cough, but our "normal" ME/CFS symptoms (which are immune symptoms) get worse. You can read more about this in the post, The October Slide: ME/CFS and Infectious Triggers. On the other hand, if my son or I gets even a tiny bit of congestion, even from allergies, we develop bacterial bronchitis and need antibiotics--because our immune systems are not fighting off bacteria the way they should be.

As for vaccines, since my sons first became ill with ME/CFS, we and their doctors all agreed they should stick to only the most necessary vaccines (they were 8 and 10 by then so had all of their young childhood vaccines), just to avoid that extra jolt to already-overactive immune systems. So, they did not get the HPV vaccines, but they did both get the meningitis vaccine before college, since that is a highly contagious infection that is often fatal. Neither of them had any adverse reaction or crash after the meningitis vaccine.

My older son and I (my younger son was well by then) normally do not get flu vaccines, but we did get it the year of the H1N1 scare. He did fine, with minimal crash after, but I crashed (worsened) severely for a full month after. That was my first and last flu shot! In almost 20 years, my son got the flu once, and I've never caught it, and there are now inexpensive and readily available antivirals for flu, so that seemed like the right choice for us.

BUT ... again, the COVID-19 vaccine is a different type than any of these. Still, I spent the past 11 months in a lengthy crash, lying on the couch, and am just starting to feel better, so I am not eager to make a leap of faith. Luckily, there is one last puzzle piece now available ...

Experiences of Other Patients with ME/CFS

With so many unknowns, what I've been waiting for is data: what happens when people with ME/CFS get the COVID-19 vaccine?

Not surprisingly, none of the pre-approval studies of any of the vaccines used people with ME/CFS! They mostly choose healthy people without pre-existing conditions for those studies. So, I was very curious as to how real people with the ME/CFS immune dysfunction would react. For several months, I couldn't find this information anywhere, but there are now two excellent sources for real ME/CFS patient information:

• Action for ME, a UK patient organization, has set up a website for UK patients to record their experiences with the COVID-19 vaccine. There are only three responses so far, but hopefully that will grow over time.
• Online Group - there are several online discussion groups available where patients share their experiences. Look for them in discussion forums and other online venues. Be aware that Facebook is cracking down on anything they think is anti-vax, so if you post a question or about your experience in a Facebook group, be cautious, avoid the word vaccine (say v. instead) or the names of the COVID vaccines (use initials instead). More information (including our own experiences) in my second post on COVID Vaccine Experience of ME/CFS Patients.
• Health Rising Poll - the Health Rising website, a reliable source of information for ME/CFS patients, has also set up a poll to collect data on responses to various COVID-19 vaccines. You can enter your own response here or click the link at the bottom of the poll to view the results so far. This poll gives me great optimism, as the large majority of patients who have responded so far said their post-vaccine symptoms lasted less than a week. I can live with that!
  

For me, I am going to keep up with the Facebook group and the poll and keep reading about others' experiences. The vaccine is not even close to being available to me yet, so I have time. My husband is 66 years old and has waited about 5 weeks now on the state's wait list for 65-and-up, with no word (though he lucked out and got one elsewhere this week, entirely by chance), so I think it will be some time before I'm eligible. There is definitely too much demand and not enough supply yet.

However, learning more and especially reading about others' experiences is making me far more optimistic that I will be able to get the COVID-19 vaccine without any long-term worsening.

[There are now two more posts in this series about COVID vaccines:  

COVID Vaccine Experience of ME/CFS Patients, providing resources and data on how ME/CFS patients (and some fibro patients) are responding to the vaccines so far, including the severe relapse rates for each of the different vaccines available.

Prep for ME/CFS Patients Getting COVID Vaccines, which is also applicable for those with fibro, Lyme disease, EDS, and immune disorders. It features tips and advice on how to prepare ahead of your vaccine, to give your system the best possible chance of a positive outcome.]

Movie Monday: Grandma

I spent some time searching for a good movie for us to watch with our fancy take-out for Valentine's Day last night. The thing is that my husband's not a fan of romances or rom-coms. I thought we could use some laughs (it was a particularly difficult week with his 95-year-old dad), and I finally settled on Grandma, a movie from 2015 with a great cast.

Julia Garner, recently of Ozark fame as Ruth, plays Sage, an older teen girl who is pregnant and wants to get an abortion so she can still go to college. She's smart and kind and sweet, but she doesn't have the $600 it will cost and her loser ex-boyfriend won't help. She goes to her grandmother, Elle, played by Lily Tomlin, to ask for her help, but Elle doesn't have any money right now, either. The two of them set off on a day-long quest to raise the funds in an antique, barely-working car that belonged to Elle's partner, Violet, who died a few years ago after 30 years together. Elle is clearly still grieving, as the movie opens with her breaking up with a new (young) girlfriend, played by Judy Greer. Grandma and Sage go from one of Elle's friends to the next (and to see the loser ex-boyfriend), to see who could lend them some money, and along the way, the viewer gets to know more about Elle's past, Elle's and Violet's wonderful love, and Elle's loving relationship with her granddaughter. Elle is gruff and prickly to most people, but she clearly cares very much for Sage, though she is honest with her, too. Sage doesn't feel like she can confide in her mother, played perfectly by Marcia Gay Harden, who is estranged from her mother.

There are a dozen or so supporting cast members here who are all great, but the spotlight is on Tomlin and Garner, both outstanding and award-winning actresses. And it's Lily Tomlin, so there is plenty of humor and laugh-out-loud moments throughout the movie. But, of course, the subject matter is quite serious and never taken lightly (Elle and Sage talk about the options and consequences). There is such warmth to the relationship between this younger and older woman. It's clear that even with Elle's grumpy and sarcastic demeanor, she has a special place in her heart for her granddaughter. We both enjoyed this warm-hearted, funny, heart-breaking movie starring two outstanding actresses.

Grandma was released in 2015 and is available on a wide variety of platforms to rent. It is available on Starz and on Hulu Premium (I didn't know there was such a thing nor that our Hulu isn't premium!). We rented it for $3.99 on Amazon, which I decided was pretty cheap compared to other Valentine's Days when we spent $30 at a movie theater!

Weekend Inspiration: Celebrate Mardi Gras at Home!

Happy Mardi Gras! And Happy Valentine's Day! There are lots of reasons to celebrate this week. Last week's Inspiration post was all about adding joy to your life by celebrating the small stuff, and this week is the perfect time to do that! And you can celebrate right from home--even from your couch or bed--and add some fun to this dreary winter period. In fact, even in New Orleans, they are celebrating differently this year; the parades have all been cancelled so their nothing-will-stop-us-from-celebrating residents are decorating their own porches like Mardi Gras floats! Check out some awesome "porch float" pictures here.

We used to live in New Orleans, so this is actually a major holiday at out house! This year, we had to cancel our annual party in favor of a small Zoom "Mini Mardi Gras" with a couple of friends last night, and our annual reunion with friends who used to live there with us with Popeye's on Tuesday (Mardi Gras Day) will also be done on Zoom. Nothing will stop us from celebrating, though!

Want to join the fun? Here is a collection of ways to celebrate Mardi Gras, New Orleans, and Louisiana  ... including food, recipes, travel tips, movies & TV shows, and, of course, some great books! You can also check out my column in Shelf Awareness that features books about and set in New Orleans, Armchair Travel: Destination New Orleans.

 

Great Adult Books Set In/About Louisiana (additional titles in my article linked above):

• The Crowning Glory of Calla Lily Ponder by Rebecca Wells, author of Divine Secrets of the Ya-Ya Sisterhood - I listened to Calla Lily's story on audio and laughed out loud & bawled my eyes out! It takes place in southern Louisiana, with plenty of local color.
• Gumbo Tales: Finding My Place at the New Orleans Table by Sara Roahen - I loved this memoir about the food, history, people, and unique culture of New Orleans.
• Trail of Crumbs: Food, Love, and the Search for Home by Kim Sunée - although this food-focused memoir covers everyplace from Sweden to France to Korea, the author grew up in New Orleans, where the food culture impacted the rest of her life.
  

Middle-Grade and Teen/YA Books Set In/About Louisiana:

(Note that middle-grade and YA books are a great option if you have difficulty with longer, more complex books, and these are all great for adults as well as kids and teens.)

• Ruined by Paula Morris - a teen/YA mystery/ghost story set in New Orleans (the perfect setting for a ghost story!)
• The Freedom Maze by Delia Sherman - a compelling middle-grade historical fiction adventure (with a touch of time travel), where a girl from 1960 travels back to 1860 Louisiana
• Zane and the Hurricane by Rodman Philbrick - a middle-grade novel about Hurricane Katrina - powerful and gripping
• Out of the Easy by Ruta Sepetys - most people are familiar with her two YA novels set during WWII (Between Shades of Gray and Salt to the Sea), but this historical novel is set in New Orleans in 1950

Movies & TV Shows

• Chef  - a wonderful, uplifting movie about a family food truck that travels from Miami to LA, with a stop in New Orleans, of course! My favorite movie of the year in 2015.
• NCIS: New Orleans - though it's a crime show, it includes many scenes of New Orleans, mention of local restaurants and landmarks, and other local tidbits. They usually do a Mardi Gras episode around this time of year, so check your cable On Demand, CBS All Access, or Paramount+.
• You can also check out some classic movies and modern classics with New Orleans settings, like A Streetcar Named Desire and The Big Easy.
• The usual livestreams of parades and other scenes in New Orleans are missing this year, but you can still check out www.mardigras.com for some Mardi Gras-themed entertainment!
  

One of the locals in Louisiana

Travel
All this talk of Louisiana making you want to visit? I have written articles about visiting New Orleans  and Exploring Cajun Country - check them out and start planning your trip (plenty of food recommendations in both!). I'm certainly ready to go back!

Crawfish!

 

Eat, Drink, and Be Merry!
Notice that many of the books and movies about Louisiana are focused on FOOD? Yes, Louisiana - and especially New Orleans - is known for its amazing, unique food. This blog post on how to celebrate Mardi Gras includes my own recipes for some classic Louisiana dishes, plus food you can grab locally  --there are plenty of suggestions in this post that you can still manage to do between now and Tuesday! Or save it for later if you like; we eat this food all year round. 

Louisana-made Zapp's chips are amazing!

NOTE that Zapp's potato chips - which you absolutely MUST try) have been bought out by PA-chip maker Utz, so you don't have to get them by mail-order anymore. We can now find them in local stores like Wawa here in Delaware....though we still ordered a carton of assorted flavors for Mardi Gras! (Cajun Crawtator and Cajun Dill are the best.)

My sons and I about 12 years ago

 

 

Lyme Disease News: Testing & Treatment

It's been a while since I've written here about Lyme disease and other tick infections, but they are still seriously affecting our lives every day! I wanted to share some interesting information I've learned recently.

First, in case you're not aware, everyone with ME/CFS, fibro, and similar illnesses should rule out tick infections, as they are very common and share many symptoms with our illnesses. Many of us, including my son and I, have both ME/CFS and tick infections. The urgency is that these infections can cause permanent neurological damage when left untreated, so you want to find out immediately if there are any tick infections behind the scenes. More information on why and how here.

Also, there are no reliable blood tests for Lyme, due to the nature of the Lyme bacteria (it doesn’t stay in the bloodstream) & the fact that many people--especially those with immune disorders like ME/CFS--don’t make the antibodies. Plus, current tests only look for 1 strain of the Lyme bacteria, when hundreds of different ones exist! The one they look for is an East Coast strain, since Lyme was discovered there, though there are many strains, and doesn't include any of the strains common to the West Coast or Europe or anywhere else. The best blood tests (like from Igenex) only catch about 65% of cases. So, if you get a positive blood test result, you definitely have Lyme, but a negative blood test result doesn’t tell you anything. In addition, Lyme is only one of a dozen common tick infections, and most doctors only test for Lyme. The only way to know for sure if you have tick infections (including Lyme) is to see a Lyme specialist or LLMD (Lyme Literate MD) who will run the best tests available but will also look at symptoms, history, and physical exam to determine if tick infections are present and which ones. Any single positive test result for ANY of the tick infections means you were definitely bit by an infected tick, then the doctor can figure out which ones based on his or her experience (that’s why you need to see an LLMD). This link includes information and resources for finding an LLMD near you (they are all over the world).

OK, so onto the News!

Breakthrough in Lyme Testing

 

As I explained above, the best existing tests only catch about 65% (at best) of Lyme disease cases. This has long been a problem, as too many doctors think that a negative test rules out Lyme entirely. Existing blood tests either look for antibodies (like the Western Blot or ELISA test) or look for the DNA of the Lyme bacteria itself (PCR testing). As explained above, there are problems with both approaches. 

 

Now, there is a wholly new testing method developed by Phelix Labs in France that looks for bacteriophages, tiny organisms that live off the Lyme bacteria. There are tens to hundreds times more of these "phages" than of the bacteria itself, and they stay in the bloodstream, unlike the spiral-shaped Lyme spirochete bacteria that burrow into tissues and joints, "hiding." The phages are specific to the type of bacteria and they only hang around for as long as there is an active infection. These are all advantages over existing technologies for either antibody or PCR testing. This excellent article from Health Rising explains more about the new testing method, using the example of a severely ill woman diagnosed with ME/CFS who finally discovered she had Lyme, thanks to this new test (after many negative tests of the older types).

For more information or to order the test, you can contact Phelix Labs in Europe or here in the U.S., R.E.D. Laboratories in Nevada is offering the test. All of the information, forms, ordering instructions, etc. are at that link.

New Treatment for Lyme Disease

 

There is news on the Lyme treatment side of things, as well! For years, the choices have been traditional antibiotic methods (plus other prescriptions, depending on which other tick infections are present) or herbal protocols from a small group of experts (Cowdon, Byron White, and Buhner).

Now, in what Lyme experts are calling a game-changer, an old medication is being used in a new way to effectively treat Lyme disease in many people for whom traditional treatments have not worked. Disulfiram is a prescription medication historically used to treat alcoholism. Research from Stanford University in 2016 showed that disulfiram can be effective in treating "persister" forms of Lyme disease--those that are resistant to traditional treatments, especially in cases of older infections that went undiagnosed for a long time. This excellent article and 12-minute video from Dr. Marty Ross (a well-known expert in Lyme) explains exactly how disulfiram works, who is the best candidate for it, and what the side effects and risks are. He also explains who is a good candidate for the treatment. The article includes data from Dr. Ken Liegner in treating 70 patients with disulfiram, showing that 92.5% improved! That's a stunning statistic for a very hard-to-treat infection. Here is a link to one of the early published scientific studies on disulfiram. 

Confirmation of the Effectiveness of Certain Herbs in Treating Lyme Disease

 

This next bit of "news" isn't all that new for some people, but the study is recent, and I have started this protocol myself. I'm already seeing great results and improvements!

A study from Johns Hopkins compared a bunch of different Lyme treatments, both prescription and herbal, and found that 7 herbs had greater effectiveness at killing off Lyme bacteria than the classic antibiotic treatment most often used, doxycycline. These include:

• Black walnut
• Cat's claw/Samento
• Sweet wormwood
• Mediterranean rockrose
• Chinese skullcap
• Ghanian quinine
• Japanese knotweed

This article provides an easy-to-understand summary of the study, in layman's language, and here is a link to the actual study paper, published in Frontiers of Medicine.

Although some LLMDs have been using some of these herbs for years, getting this clear evidence of effectiveness in a published study is still news because they were proven more effective than the antibiotics usually prescribed, and a published study can be shared with any doctor. Although I was already taking samento, and my herbal combo product (Byron White's A-L Complex) contains black walnut, the rest of these were new to me. I shared it with my LLNP (Lyme literate nurse practitioner), who knew about these. I immediately increased my dose of samento and began taking Japanese knotweed, and I am already greatly improved! As I get used to these and bring the doses up (I have to go up gradually to manage the Herx reaction or temporary worsening), I will add some of the others. I didn't realize that my Lyme wasn't well-controlled until I worsened considerably the past year, and now I have some new tools to hopefully better control it ... and maybe even finally get rid of it? This is the best I have felt in the past year!

So, for anyone struggling to diagnose or treat Lyme disease, these are some new options to consider. And if you have ME/CFS or fibromyalgia and have not considered tick infections yet, you should get evaluated by an LLMD to rule out tick infections. We learned the hard way with our son that the longer they go undiagnosed and untreated, the harder they are to get rid of (we knew he had Lyme but it was 3 1/2 years more before we found out he also had two other tick infections and by then he was very ill). So, find an LLMD, share this new information, and start on the road to improvement!

 

TV Tuesday: Halt and Catch Fire

Looking for something to watch on Netflix? My husband and I just finished the four-season TV show Halt and Catch Fire that originally aired on AMC from 2014-17, and it was excellent. I'd heard years ago that it was really well-done, and we finally got around to watching it and really enjoyed it. 

Halt and Catch Fire is a drama set in the computer industry, covering about ten years from 1983 through the early 90's, from the development of the first IBM clones to the birth of the internet and search engines. If that sounds boring, it's not! The show is really about the people, a small group that started out together in Texas and ended up in California, and the characters are at the heart of the show. Gordon Clark, played by Scoot McNairy, works as an engineer for an electronics company in Texas called Cardiff. His wife, Donna, is played by Kerry Bishé and works for Texas Instruments as a software engineer. They have two little girls and dream of starting their own business together someday. When Joe MacMillan, played by Lee Pace, a tall, confident man, leaves IBM to come to Cardiff, he shakes things up in a big way. He has big dreams of leaving behind his father's company (IBM) to create computer products that can compete with them, insisting that personal computing is the future. Cardiff manager Tom Bosworth, played by Toby Huss, also hires a young, inexperienced but brilliant programmer named Cameron Howe, played by Mackenzie Davis, to round out the team. And they're off! This ragtag team in this Texas company sets out to set the world on fire with the first IBM clone, to break up that company's monopoly on the business, ... and then to develop the world's first portable computer, which seems like a crazy idea at the time. From there, the series follows this core group through about a decade, during which time both the computing world and the people in it change dramatically. There are new ideas, company start-ups, partnerships, and plenty of both wins and losses.

It's hard to accurately describe this excellent show because while the plot is interesting, the people are at the heart of it. The actors are all outstanding in their roles, and their characters have real depth and go through all kinds of highs and lows, both personally and professionally. They are each very flawed, real-feeling people who gradually become a team and need each other. Meanwhile, it's fascinating to peek inside the history (fictionalized) of how we went from hulking single machines on desks to a world where everyone is connected by small devices to the rest of the world instantly. Even the Clark kids, who go from little girls to independent teens during the course of the story, are excellent actors and fully fleshed-out characters. It's a fascinating and engrossing show, and we were sad when we realized we were watching the final episode. Definitely worth your time.

Halt and Catch Fire originally aired on AMC and is now available on Netflix. It is also available for streaming on Amazon, starting at $1.99 an episode or $16.99 for the first season (all seasons available). And it is available on DVD - season one is $11.99 (all seasons are on DVD, but, alas, I don't see any box sets of the entire series).

Weekly Inspiration: Winter Celebrations

Feeling the winter blues? Sick of staying in this time of year with every day the same? Thinking that the shortest month actually feels like the longest?

Good news for you then! This is a great time of year for small celebrations that will brighten your days, add some variety to the sameness, and give you something to look forward to! Plus, with no one able to go out and gather with others, you're not even missing anything.

In my book chapter, Celebrate Everything, Big and Small! (reprinted below), I talk about how celebrating the small, special days can help to bring joy to your life and your everyday routine. And guess what? This time of year that often feels like the winter doldrums is filled with reasons to celebrate! Even if you think you are too sick to celebrate, this post includes lots of ideas for low-key ways to make the upcoming days special.

 

This month is loaded with celebration days! Today is Superbowl Sunday in the U.S. Not into football? Neither am I! But we still use it as an excuse to celebrate (see ideas below). Next week is a big one: Valentine's Day on Sunday, February 14, and Mardi Gras on Tuesday, February 16 (real Mardi Gras goes on for many weeks, so it is perfectly acceptable to celebrate it any time--like the weekend--leading up to Mardi Gras Day). In March, we've got St. Patrick's Day (3/17) and the First Day of Spring (3/20), and then Easter falls on April 4 this year. I've added some fun photos in the chapter reprint below, plus some links above to even more ideas on how to celebrate.

Now, you have some fun to look forward to! How do YOU celebrate special days at your house? 

(Reprinted from Finding a New Normal: Living Your Best Life with Chronic Illness by Suzan L. Jackson - © 2020 Suzan L. Jackson. Click here for more information and to order in different formats.)

 

Celebrate Everything, Big and Small!

 

 

S

ince becoming ill with ME/CFS in 2002, I have been surprised by how life with chronic illness makes me more aware of the small pleasures all around me. Although our lives are often defined by illness-imposed restrictions, we have found ways to add pleasure and meaning to our everyday life, too. One way is to celebrate all kinds of occasions, big and small.

I came by my love of celebration from my mother. When I was a kid, we celebrated everything, and I loved the atmosphere of joy and festivity. My mom was, and still is, a major party animal, so I learned from the best! When I had children, I knew I wanted to do the same thing for them. After chronic illness entered our lives, these celebrations became even more important, a way of injecting fun into our lives, including (especially) on the bad days. Our kids love our celebration traditions, even now that they’re grown!

Of course, we celebrate the big holidays, though we’ve had to scale back since chronic illness hit. We now focus on certain elements of each holiday that are the most important to us. At Christmas, that’s decorating our tree together and getting together with our oldest friends for a cookie-decorating/Grinch-watching party. (To reserve energy for celebrating, we now buy premade cookie dough.)

We also celebrate all kinds of smaller occasions, which can be even more fun and less stressful than celebrating the big holidays. The dead of winter, after the major holiday season is past and before Easter and spring arrive, can be a dark and depressing time. But there are lots of smaller holidays and occasions to celebrate during that time that can add a bit of brightness to an otherwise dreary winter.

 

Ready for Superbowl with our favorite treats!

 

One favorite is Superbowl, the first Sunday in February. We’re not big football fans, and our days of attending big Superbowl parties are long past, but we still get into the spirit of the occasion. Every year, we have our favorite game-day foods—simple things, like tortilla chips with salsa and guacamole, mini hot dogs rolled in crescent rolls, and my husband’s famous Buffalo chicken (pieces of chicken breast sautéed in Buffalo wing sauce). While happily munching on our savory treats, we watch the game and the much-anticipated TV ads.

 

Ready for Mardi Gras with my sons (years ago)!

Mardi Gras (the day before Ash Wednesday) is considered a major holiday at our house because my husband and I used to live in New Orleans. Before I got sick, we had an annual Mardi Gras party that grew to 50 to 60 people at its height! A few years into my illness, we realized that we didn’t have to completely give up our Mardi Gras festivities; we just had to scale back. Now, we invite a few close friends over, buy some traditional New Orleans’ food (like king cake from a local bakery), and make a couple of favorite dishes, like red beans and rice and jambalaya. Friends bring food, too. We play New Orleans’ music, enjoy the food and company, and sometimes watch the real Mardi Gras parades online.

 

Ready for Valentine's Day!

This season also brings Valentine’s Day (February 14), another celebration we enjoy each year. We hang up heart decorations, give each other cards and treats, and indulge in a simple (dairy-free) chocolate fondue for dessert. Similarly, we observe St. Patricks’ Day (March 17), by wearing green, hanging up shamrock decorations, and eating our traditional corned beef and cabbage dinner. It doesn’t matter that we aren’t Irish; we still join in the fun and make it a special day. If you like jokes and pranks, April Fool’s Day (April 1) is a fun one to celebrate. One year, I even celebrated Groundhog Day (February 2) by putting little edible groundhogs made from cookies into my sons’ bowls of oatmeal for breakfast!

 

St. Patrick's Day decorations

You don’t need a holiday on the calendar for an excuse to celebrate. Once or twice a year we have Mexican Night. I make our favorite enchiladas, decorate the table with a colorful serape, and mix up a special orange-mango fizzy drink. We used to celebrate the start of summer by blasting “School’s Out for Summer” as my kids got off the bus and then going with friends to play in a local creek. Of course, there is always a party when we visit their grandma (my mom)!

If you are more severely ill, you may be thinking that you can’t celebrate. Here are small ways to make a day special, with the help of friends or family:

Dress for the holiday, even if it’s just colored or themed pajamas and some whimsical socks or earrings.

Hang up simple decorations near your couch or bed. We have different sets of window clings for each holiday, and I still hang up holiday-themed artwork my sons made in school when they were little.

Listen to music associated with the holiday or special occasion, like Christmas carols, New Orleans’ jazz for Mardi Gras, Irish music for St. Patrick’s Day, and oldies but goodies from your younger years on your birthday.

Watch holiday-themed movies, such as A Christmas Story, Valentine’s Day, Mardi Gras (starring Pat Boone), Ghostbusters (perfect for Halloween!), or Finian’s Rainbow. (A surprising number of results come up when you search for “movies with leprechauns in them.”) Of course, you have to watch Groundhog Day on Groundhog Day—at least twice!

Cuddle with your children or grandchildren (or nieces & nephews), and read holiday-themed books together. If that’s too much for you, let them read to you, listen to audio books, or watch short videos together.

Eat holiday-themed foods—the best part of any celebration! Enlist the help of a friend or family member to prepare the dishes or order in appropriate foods: Chinese take-out on Chinese New Year, corned beef on St. Patrick’s Day, Mexican on Cinco de Mayo.

Watch holiday specials and live events on TV or online, like parades (Thanksgiving, Fourth of July, Mardi Gras), New Year’s Eve at Times Square, the Oscars, It’s the Great Pumpkin, Charlie Brown!, and more. Almost everything is televised or live-streamed now.

Next time you are having a bad day or week or month (or year), find a reason to celebrate and insert some joy into your life!

 

© 2020 Suzan L. Jackson

Movie Monday: Blow the Man Down

I was looking for something on the lighter side (as opposed to a classic thriller) for our Saturday night movie, so we chose the dark comedy Blow the Man Down. I heard about it on Pop Culture Happy Hour, one of my favorite podcasts. It's not laugh-out-loud funny, but it was an amusing story about the dark underbelly of a quiet Maine fishing village.

Mary Beth (played by Morgan Saylor) and Priscilla (played by Sophie Lowe) Connolly, two young adult sisters, have just lost their mother. The three of them lived together and ran the Connolly Fish store in the small Maine coastal town of Easter Cove. The girls are grieving over their mother's death, as the whole town attends the funeral and a reception at the house afterward. While the men of the town work in the water, fishing and lobstering (with sea shanties sung at various points during the movie!), it's a small group of older women who seem to run things. Susie (played by June Squibb), Doreen (played by Marceline Hugot), and Gail (played by Annette O'Toole) walk around town together, keeping an eye on things and watching over the newly orphaned young women. Then there's Enid, played by Margo Martindale, who dresses much too nicely for this cold, remote place and runs the local "Bed and Breakfast" aka brothel, which is a well-known secret in town that is tolerated. The night after the funeral, Mary Beth, who has plans to attend college next year, goes out to the local bar to blow off some steam and ends up in a bad situation with an even badder guy. One thing leads to another, and the guy ends up dead (harpooned) on the docks. She runs home in tears and tells her sister what happened, and the two girls set out to cover up the crime. But there are really no secrets in tiny Easter Cove.

So, clearly, this movie begins with some really dark stuff: death of a beloved mother, violence, and murder. But as the sisters try to cover things up, and the three older woman walk around town and gather at kitchen tables, things turn a bit farcical, though it always keeps that dark edge. It reminded me a bit of a Coen Brothers film. Other than the two police officers (and the dead thug), it's a mostly female cast, and they are outstanding in their roles. The plot gets a bit twisty (but not too complex), as the scared girls try to keep the police (and everyone else) from finding out what happened. Despite its dark themes, it's a fun, original movie that was very entertaining. It has an unheard-of 98% rating on Rotten Tomatoes. Just be prepared to get sea shanties stuck in your head!

Blow the Man Down is an Amazon Original movie, so it is available exclusively on Amazon.