Roadmap to Effective Treatments for ME/CFS and Long-COVID

The problem with a blog is that older posts kind of get buried, and my blog is now over 18 years old! So, I wanted to write a new post that directs you to all of my main treatment posts, since that is the topic that people with ME/CFS and long-COVID are often most interested in. For a more detailed explanation of each of the topics below, check out the Effective Treatments tab at the top of the page. That is also a guideline of all the treatments we have found effective, but I thought it would be helpful to write a current post to bring it to more people's attention.

(NOTE: Everything mentioned in this post is based on research and the practices of the top doctors treating ME/CFS and Long-COVID patients, as well as our own experiences.  You can direct your doctors to the U.S. ME/CFS Clinician Coalition for extensive resources on how to diagnose and treat.)

There is a misconception that there are no effective treatments for ME/CFS, but that is not true--it's just difficult to find a doctor who is knowledgeable about all of them. As with most aspects of this complex immune disorder, patients (or their caregivers) often have to be their own advocates and suggest treatments to their doctors. This post on Finding a Doctor for ME/CFS includes lists of ME/CFS experts all over the world, second-tier doctors who know how to treat some aspects of ME/CFS, and tips on finding a local primary care doctor to help you.

Below, I will just provide a brief outline on the aspects of the disease where treatments can help (based on our experiences) with links to the blog posts with detailed information, including how that aspect affects the disease, why treating it can help, and options for treatment. Each of those posts also includes links to research and more information. Check out the Effective Treatments tab at the top of the page for a more detailed outline.

Here are the treatments that have helped my sons and I to greatly improve our ability to function, our stamina, our exertion tolerance, and ultimately, our quality of life. We now live active, semi-normal lives. My son is now even working full-time!

These are not necessarily in order (though going down the list works). ME/CFS specialists often focus on treating those symptoms or aspects of the illness which are causing the most problems first. Remember: everyone is different!

Roadmap to Effective Treatments:

Correct Sleep Dysfunction. Fixing sleep helps everything! These treatments help to correct the problem at its root cause, not just knock you out with sedatives. Most of the treatments are cheap and readily available and any doctor should be familiar with them.

Treat Orthostatic Intolerance (OI). OI is an integral part of ME/CFS and long-COVID and treating it can often bring dramatic improvements. There are a wide variety of treatments available, many of them familiar to any primary care doctor. This post provides an overview of diagnosing & treating OI, with lots of links to more information.

Treat Methylation. Methylation is almost always dysfunctional in people with ME/CFS and long-COVID and directly affects GI function, energy production, detoxing, and mitochondrial function. This blog post explains what methylation is, with information on how to treat it with simple supplements. If you are one of those who can't tolerate even small doses of medications or supplements, start here. Vitamin B12 is an important part of improving methylation; this post explains the types and formats that are most effective.

Treat Immune System Dysfunction. Since ME/CFS is, at its heart, an immune disorder (as more and more research has proven) and immune system dysfunction is behind many of our symptoms, it makes sense to try to normalize the immune system. Both immune suppressants and immune stimulants can make us worse, so we need immune modulators. Some to try, plus other treatments:

• Low-Dose Naltrexone (LDN)
• Inosine or Imunovir
• Increase Glutathione 
• Treat MCAS (Mast Cell Activation Syndrome) 

Diagnose and Treat Underlying Infections. For many people, this aspect of treatment might need to come first, not last, especially if you have tried some of the above treatments and nothing seems to help you. Because our immune systems are dysfunctional and various infections are usually the triggers that start ME/CFS, almost all of us have some infections present that prevent us from improving.

• Reactivated Viruses. Our immune dysfunction allows old viruses to reactivate, especially herpes-family viruses. In these cases, treating with anti-virals often helps. If you know what infection triggered your ME/CFS to start, like mono/glandular fever, then treating that is often very effective. Dr. Martin Lerner, now deceased, led the way on research into Treating ME/CFS with Anti-Virals.
• COVID. If you have long-COVID or COVID worsened your ME/CFS, then treatment with Paxlovid could help, according to anecdotal reports. Studies are on-going.
• Lyme Disease and Other Tick Infections. Tick infections often go hand-in-hand with ME/CFS (and, indeed, Lyme disease is one of the dozen or so infections identified as a trigger for ME/CFS). This post explains why everyone with ME/CFS or FM should be evaluated for tick infections and includes a link for finding a Lyme expert near you. This is especially important for anyone with join pain and/or nervous system symptoms. The urgency is that tick infections can cause permanent neurological damage if left untreated. If you've had a negative test for Lyme, that doesn't really mean anything--the post explains why.
• Yeast Overgrowth. This is incredibly common in ME/CFS and long-COVID due to our specific kind of immune dysfunction. While not technically an infection, the immune system reacts as if it was. Wide range of treatments (newly updated in 2024) at the link.
• Infection-Triggered Crashes/Relapses. Exposure to even a simple cold can often trigger a severe crash or relapse in ME/CFS or long-COVID, due to our immune dysfunction. This post covers ways to improve the immune system to prevent those crashes and ways to treat when they occur.
  

Diagnose and Treat Endocrine Dysfunction. ME/CFS causes severe endocrine dysfunction--that's the part of the body that controls hormones, and hormones control everything. Messed-up hormones are behind sleep dysfunction (which can be corrected) and are one factor behind Orthostatic Intolerance, too. Both sex hormones and cortisol are covered in that endocrine dysfunction post link.There a more detailed post on Diagnosing and Treating Thyroid Dysfunction, as it's a complicated topic.

Diagnose and Treat Gastrointestinal (Gut) Issues. 70-80% of immune cells in the body live in the GI tract, so it's critical to address GI issues. Plus many people with ME/CFS and long-COVID develop GI problems. This blog post outlines the testing, diagnosis, and treatment of my son's GI problems, which resulted in huge improvements in his overall condition, finally allowing him to work full-time! 

 

There's no miracle cure or single treatment for ME/CFS and long-COVID, but these are the treatments that have most helped us.

What treatments have most helped YOU?

Please leave a comment below.

You can also connect with me on Facebook and Twitter and now on Instagram, too!

ME/CFS Treatments: Tried & True and New Hope

I recently came across two interesting pieces--an article and a video--from ME/CFS specialists regarding treatments and even, potentially, the possibility of a cure. I wanted to share both with you here.

Tried and True

This blog post article was written by Dr. Eleanor Stein, who is both a patient of and doctor for ME/CFS. You can read her story and learn more about her blog here; her mission is to share science-based information on ME/CFS. This particular blog post is called A New 4-Step Treatment for the Severely Ill with ME/CFS, which she says comes from Dr. Dag Stola and his team at the Røysumtunet Hospital, a center for severe ME/CFS patients in Norway. Most of this "new" treatment plan was nothing really new but the basics that I've known (and used) for years. It's a short article you can read for yourself and share with your doctor, but some of the treatments included are:

• Hydration, with some specific products recommended (we like GU Brew)
  
• B1 - thiamine or benfotiamine (the one we take)
  
• N-Acetyl-Cysteine (NAC)
• Multi-vitamin (we take individual vitamins since we are high in some and low in others)
  
• Multi-mineral (we take individual minerals; the combo pills sometimes contain the wrong types)
  
• NADH (the one I just ordered)
  
• CoQ10 (I take this one - supposed to be better absorbed)(this one combines NADH and CoQ10)
  
• Methyl- and/or Hydroxy-B12 injections (more info at link)
  
• Low-dose naltrexone (though the doses recommended here are much too high for many ME/CFS patients) - more info at link.
  
• Low-dose aripiprazole

I've never heard of that last one, but my son and I have been using most of the rest for many years, and they do help somewhat. I've included links to my own blog posts, if you want more detailed information on any of those. Many of the supplements were mentioned in my post on preparing for COVID vaccines. I certainly wouldn't argue with any of these, but it seems to leave out a few things that have helped us the most over the years:

• Treating orthostatic intolerance (OI), beyond just hydration, which can only do so much on its own.
• Correcting sleep dysfunction - for us, this was absolutely critical. My son recently went through an insurance change/gap and ran out of his meds for correcting sleep dysfunction (not sedatives) and definitely noticed the difference!
• Treating immune dysfunction - this list does include low-dose naltrexone (LDN), but there are other ways to help normalize immune function as well. My blog post at the link also discusses treating underlying infections, which can be extremely valuable, depending on the patient.
  

So, it's an interesting list of treatments, though sort of an odd assortment, based on our experiences. I suppose if you are starting from no treatments at all, as so many patients are, then that's a decent starting point ... though I would tackle sleep dysfunction and OI early on, since they help with everything else. 

I did notice the inclusion of NADH on that list, something that I tried early on in my illness, almost 20 years ago, and had forgotten about. The blog post says the research is mixed on NADH but it does seem to help some patients, so I'm going to give it another try, starting next week.

New Hope

And for a completely different perspective, I was fascinated by this short, 10-minute video from one of the top ME/CFS researchers in the world, Dr. Ron Davis, whose son has severe ME/CFS (so he is highly motivated!). Some of this brief video went over my head--there is some scientific stuff in here--but it's very short, and I was interested to hear about some of this new research. Dr. Davis explains it for us laypeople. He also discusses how crashes keep the cycle going, which I found very thought-provoking. This brief talk is titled Is ME/CFS Curable? and Ron's conclusion was that yes, it probably is. You can watch the 10-minute video on YouTube or here below: 

 

Fascinating ... and this video definitely gives me hope for a better future for us all! And I've been thinking a lot about what Davis says about how crashes perpetuate the disease. Not really news, but he's got me thinking that I'm not resting enough. I've been stuck in a crash for more than a week, so today I am newly motivated to try to rest as much as possible and not push past my limits.

Which treatments have helped YOU the most?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

 

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.

 

NEWLY UPDATED: Increasing Glutathione in ME/CFS and Related Illnesses

glutathione molecule

Just a quick note to let you know that I spent some time this week updated my very important post on Increasing Glutathione in ME/CFS, Long-COVID, and Related Illnesses.  

Glutathione is a naturally-occurring compound in the body that is absolutely essential for energy production, immune function, detox, and more. As you might have guessed, people with ME/CFS need lots of it but don't make enough of it. Increasing glutathione has had obvious positive effects for us, and how you get glutathione (or help your body make more) is important, since some supplements are mostly a waste of money.

I first wrote this post in 2017 and had added new notes to it and brief updates several times over the years, as I got new information or we tried new approaches. This time, I edited the whole post, fixed any broken links, checked new information, and made sure it was all up-to-date.

If glutathione is not something you have looked into before or if you'd like to know more, I hope you'll find the newly updated post helpful.

URGENT ACTION REQUIRED FOR METHYL-B12 INJECTIONS!

URGENT! ACTION NEEDED NOW!

Many of us, not only with ME/CFS but with a variety of chronic illness, rely on vitamin B12 injections as a crucial part of our treatment plan. In this post, Vitamin B12 and ME/CFS, I write about what B12 does, how it helps, why it is essential, and the most effective forms and types to use. In that post, I explain why injections of B12 are the most effective way to get it into your bloodstream (oral types don't work as well, if at all), and why the most common type of B12 available commercially, the cyano- type, is not a good choice for most of us with chronic illness. Instead, I recommend using methyl- or hydroxy- types of B12 in most cases. My son and I both use those two types, made for us from a compounding pharmacy.

BUT NOW, INJECTABLE METHYL-B12 (also known as methylcobalamin) IS AT RISK OF NO LONGER BEING AVAILABLE IN THE UNITED STATES!

The FDA is currently considering whether or not to continue allowing methyl-B12 to be made by compounding pharmacies--and the track record is not promising. In the past two years, only 30% of the medications the FDA has reviewed in this way have been allowed to continue being sold.

What can you do?

Send a quick electronic comment to the FDA, explaining WHY methyl-B12 is important to you, how it helps you, how long you've taken it, etc.

The deadline for public comments is this week: Wednesday May 26!

Public Comment Link: https://regulations.gov/document/FDA-2021-N-0357-0001 (click the blue comment button)

There are multiple compounded medications being considered for removal at this time, so be sure you specify you are writing about methylcobalamin.

I received notice of this pending action from my own compounding pharmacy, so I am sharing that with you. I'll include the letter (with instructions) below as a photo, but you can also access and print the page here as a pdf. The link for electronic comments is in that letter.

PLEASE ACT NOW SO WE DON'T ALL LOSE OUR METHYL B12!

Here is the comment I left on the website (it only took a few minutes) - feel free to copy relevant parts describing the necessity of Methylcobalamin as part of your treatment - JUST BE SURE TO CHANGE THE PERSONAL INFORMATION (FIRST PARAGRAPH). If they see duplicate comments, they may not count them.

Re: PCAC Review of Methylcobalamin

My son, XXX and I, Suzan, (55) both have multiple chronic illness, including a complex immune disorder and multiple chronic infections. We live in Wilmington, Delaware. We have both taken methylcobalamin injections for 14 years, since 2007. We both self-inject every other day, alternating hydroxy- and methyl- types because that is what is most effective for us. We purchase our methylcobalamin from Hopewell Pharmacy, a compounding pharmacy, and it is prescribed by our physician. We both take 3.5 mg per dose (every other day). Because we get it from a compounding pharmacy, they can make up a higher concentration solution - 25 mg/ml - so that the amount (ml) that we inject is tiny. This makes the injections much more comfortable and sustainable over time.

Methylcobalamin is an absolutely essential part of our treatment program. Because of our chronic illness, our bodies do not absorb vitamins well, so supplementation is often necessary, as is the case with B12. This vitamin is essential for production of red blood cells and DNA and for the functioning of our nervous systems, as our disease is known to cause severe autonomic nervous system dysfunction. This means that the methylcobalamin injections help us with cognitive function, immune function, energy, mitochondrial function, and nervous system function, all of which are dysfunctional in our disease. In simple terms, the methylcobalamin injections give us the energy and mental clarity necessary for basic functioning and activities of daily living, even though the disease very much limits what we can do.

In addition, it is crucial for us to have access to injectable methylcobalamin, only available through compounding pharmacies. Many studies have shown the oral forms to be poorly absorbed, and I noticed a huge improvement when I switched from sublingual tablets to the injections. The type of B12 is important, as well. Most commercially available B12 - and ALL injectables commercially available - are the cyanocobalamin form of B12, which is not effective for us and can even be dangerous to us. That cyanide molecule requires glutathione in order to be converted to usuable methylcobalamin in the cells, but with our disease, our cells don't make much glutathione, so we can not efficiently convert cyanocobalamin. That's why direct supplementation with methylcobalamin injections is necessary.

We are not alone. I write a blog about chronic illness, have written a book about it, and have started several support groups for people with similar diseases, both in-person locally and online, with thousands of members. I know that many, many more patients with similar diseases rely on compounded methylcobalamin (either injections or in IVs) as an essential part of their treatment protocol. Please continue to allow methylcobalamin to be compounded.

 

Prep for ME/CFS Patients Getting a COVID Vaccine

This is my third post about the COVID vaccines and ME/CFS. The first, ME/CFS and the COVID-19 Vaccines, explained about the specific kind of immune dysfunction in ME/CFS, how these vaccines work, and sources for patient experience. My latest post last week, COVID Vaccine Experience of ME/CFS Patients goes back to some of those resources for patient experience, three months later, to discuss what has been reported by thousands of patients. This third post will cover preparations that the ME/CFS experts recommend you take before getting your vaccine. Note that this third post, about vaccine preparation, will probably be helpful for people with a wider range of chronic illnesses than just ME/CFS.

There are three main concerns about getting the vaccine in ME/CFS and other chronic illnesses, with different things you can do for each to improve your chances of a good outcome. First, I will cover the basics: things you can do to help improve your ME/CFS in ways that will help you to better tolerate the vaccine (and feel a whole lot better, too!). Then, I will sum up with a list from the experts that pulls all of this together.

 

Improve Detox

It's well-known that many patients with ME/CFS over-react to even tiny doses of medications or supplements, so the concern with the vaccines is that we'll react to something in them and have trouble clearing it out of our systems. This ability to detox effectively and process toxins in our bodies is directly related to the methylation process. Methylation happens within each of our cells, and is a complex series of processes. Methylation not only controls detox processes but also the manufacture of adrenal hormones (which control all bodily functions), neurological processes, and even the manufacture of DNA and RNA. If you have poor methylation (as most with ME/CFS do), you are likely to have more trouble with the vaccines.

Fortunately, there are lots of simple steps we can take to help improve methylation, which will in turn help to improve many aspects of our disease. This post, The Methylation Cycle: Central to ME/CFS, explains more about what methylation is, what it does and how it works, and toward the bottom, steps you can take to improve methylation.

Reduce the Possibility of an Allergic Reaction

Since ME/CFS is, at its heart, an immune disorder that makes most of us over-react to allergens, allergic reactions are a bigger concern for us than for the general public. Many of us react to all kinds of things, from medications to foods to things in our environment. This tendency of our immune system to over-react to allergens puts us at greater risk of a serious allergic reaction to the vaccines.

Many of us with ME/CFS also have Mast Cell Activation Syndrome (MCAS), where our mast cells (part of the allergic system) are in an almost-constant state of activation. This can result in typical sort of allergy symptoms, like runny nose, sinus problems, watery or itchy eyes, hives, and even anaphylaxis (swelling/closing up of the throat and mouth). But, for us, MCAS can sometimes just add to our "normal" ME/CFS symptoms, like fatigue, lack of energy, pain, immune symptoms, and brain fog.

My son and I began treating MCAS a couple of years ago; his food allergies were ramping up and he'd had an unexplained anaphylactic episode and my "usual" allergies (mostly dust and mold) were just bothering me all year-round. Treatments for MCAS are mostly simple and easy to find, available over-the-counter without a prescription. We've both seen improvements with this approach, and I know other patients who've seen even more significant improvements from treating MCAS. You can read all about MCAS, how to treat it, and what is working for us at my post about Mast Cell Activation Syndrome (MCAS) and ME/CFS. It's more than just antihistamines, so take a look.

Again, as with improving methylation, treating MCAS or using MCAS-type treatments will not only reduce your chances of a bad reaction to a COVID vaccine but may also improve your overall condition.

Improve Your Immune Function

Since immune dysfunction is at the heart of ME/CFS, improving or normalizing your immune function will help to improve ALL of your symptoms ... and will also help to ensure you respond to your vaccine as "normally" as possible. Improving immune function ahead of time can help to improve the odds that you will not relapse badly after the vaccine and that your body will do what it's supposed to and make the COVID antibodies. And, again, it will improve your overall ME/CFS condition.

Much of what I have written about here on the blog and in articles for the past 14 years has been about the immune dysfunction of ME/CFS and how to treat it. My son and I have had great success with this, and much of our improvement over the years (we now both function fairly well and live pretty active lives) is due to improving immune function. Immune System Abnormalities in ME/CFS provides an overview of how the immune system in ME/CFS is dysfunctional. And Immune Dysfunction in ME/CFS summarizes the three simple, inexpensive treatments that have helped us the most over the years, as well as a discussion of the importance of treating underlying infections. That post links to more information on inosine, low-dose naltrexone, glutathione, and more.

Finally, back in February, I wrote about my bad relapse that began in March 2020 (and lasted until two weeks ago!) and the immune issues my doctor found and some treatments recommended. I ended up getting the most benefit from a product called Transfer Factor Multi-Immune from Researched Nutritionals (we buy it directly from our practitioner, but I see a few places where you can find it online). It--like the three treatments I mentioned above--is also supposed to help normalize immune function, increasing Natural Killer Cell function and balancing Th1-Th2 (explained in the immune anbormalities post above), both very much needed in ME/CFS. It has worked well for me, and I think has been a factor in my long relapse finally ending. I started at 1 pill a day and gradually increased to 3 pills twice a day.

Experts' Recommendations

You can read advice from several top ME/CFS experts down toward the bottom of this Health Rising article. Many of them advise taking antihistamines like Benadryl or Zyrtec--that's to prevent an allergic reaction, as discussed up above and in the MCAS article I linked to.

Dr. Nancy Klimas, one of the top ME/CFS experts in the world, has recommended the following supplements, added every day, at least two weeks before your first shot:

N-Acetyl Cysteine (NAC) 600mg

Increase Glutathione

CoQ10 as Ubiquinol 200mg

Vitamin C 

Alpha Lipoic Acid (ALA) 300mg

Carnitine 1000mg (we take 1 L-Carnitine and 1 Acetyl-L-Carnitine - more info here)

Zyrtec (we get generic liquid gels (no lactose) or Benadryl start day before and continue for 3 days after

Everything listed here is aimed at one of the three areas I outlined above (detox, allergic reactions, and immune function), and as I said, any of these should help your ME/CFS!

There are lots of ways to increase glutathione (glutathione in pill form is not very effective). It's all explained in my post on Increasing Glutathione in ME/CFS. This will help with detox, improve immune function, and give you more energy.

My son and I were already taking all of these daily (for many years), except for vitamin C, so I added 1 g of liposomal Vitamin C daily for both of us (liposomal is better absorbed and less likely to cause stomach upset or diarrhea). I also normally only take Zyrtec at night, so I took it twice a day for a few days before my vaccine (see MCAS post).

And, my Lyme specialist also recommended increasing selenium for two weeks before my vaccine, so I doubled my normal dose. Again, I've been feeling really good, so I will probably continue the vitamin C and higher dose of selenium (after talking it over with my doctors).

And, after all that ... I got my first dose of the Moderna vaccine today! It was about 7 hours ago, and so far, I have no reaction or side effects. I am willing to put up with even 2-3 weeks of a bad crash; I just don't want to go into another long-term relapse, so I am hoping I have improved my chances of a good outcome. I feel like I have done all that I could that is within my control.

Remember, there are polls and groups where you can document and discuss your own vaccine experiences, so check those out.

Have you had your vaccine yet? If not--or if you still need your second dose--then I hope this information will help you.

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.

 

New Diagnoses and New Treatments ME/CFS and Lyme

UPDATED: February 24, 2026 

Our son's struggles with ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) and tick infections (Lyme disease, bartonella, and babesia) got even more difficult this year, but he is beginning to see some improvements now, thanks to a variety of new treatments.

It's been a long, hot summer here with seemingly never-ending crises in our family, but the biggest one has been the decline of our son's health. When he moved back home in May (he's 25), he was in terrible shape - worse than he's been in years - with a bunch of new symptoms and 40 pounds lighter. We knew he hadn't been doing well lately, but we didn't realize just how bad things had gotten. I took him to an Integrative Health practice that we'd heard good things about from local friends in our support group. The practice includes several different medical professionals, though we have been focused on two of them: a Nurse Practitioner (NP) who specializes in tick-borne infections (but looks at the whole body) and a Functional Medicine Practitioner, also a nurse, who specializes in GI issues and genetics. Both have been helpful so far, and with a bunch of new treatments and changes, our son is slowly improving. We hope to get him back to the point where he can live independently and even support himself; it is a slow journey, but we are seeing progress. Here's a summary of what we have learned and what he is trying, in the hopes that some of this will help others as well.

Brief History and Background
It's always hard to give a "brief" history of our son's illnesses because it is complicated, but here goes. He became ill with ME/CFS in 2004, two years after I did (his younger brother had milder ME/CFS that began at the same time but he is now fully recovered). By spring 2006, he was doing quite well, thanks to treatment for Orthostatic Intolerance and was back to school full-time, back in band, and even playing soccer again.

In April 2007, he had sudden onset of joint pain, plus all of his usual ME/CFS symptoms worsened. He tested positive for Lyme disease (a lucky thing, since the tests only catch about 60% of cases) and was treated for it. The joint pain improved, but he never really got back to that good state he was in the previous year. Over the next three years, his condition gradually worsened. Finally, some strange symptoms - and the help of other parents online - clued us into the culprit, and we took him to an LLMD, a Lyme specialist. He confirmed that our son had two other tick infections, bartonella and babesia, in addition to Lyme. Since the three infections had been present for so many years (and gone mostly untreated), they were dug into his system pretty solidly and were difficult to treat. His immune problems due to ME/CFS made treatment even trickier.

Fast-forward ten years. With treatment for the three tick infections, plus more treatments for ME/CFS, he improved to the point where he was able to start college on time, live on campus, and graduate with an engineering degree. The past ten years had its share of ups and downs, but each time he got worse, we got to the bottom of the issues and treated him. This winter, though, he experienced the severe decline that I described. He was living away from home, there was a lot of stress in his personal life, and I had switched him from his usual tick infection treatment protocol (Byron White) to a different one (Zhang), a change I greatly regret now, as his tick infections had gotten worse, with worsening joint pain, fatigue, nausea, and headaches. In addition, he had developed completely new and alarming symptoms, including severe nausea, vomiting, a burning pain in his stomach, and severe anxiety.

The Tests
Our new medical practitioners ordered a slew of tests at his first visit, including:

• Genova Diagnostics GI Effects 3-day stool testing (our medical team now prefers the Gut Zoomer test from Vibrant Wellness for stool testing).
  
• Bartonella testing through Galaxy Diagnostics (well-known as the best bartonella testing lab, though still not 100% accurate)
• Lyme and babesia testing through Igenex (again, known as the best lab for Lyme testing, though no tests can catch 100% of the infections), plus another babesia test through Medical Diagnostic Labs
• Special stained blood film test through Fry Labs
• Tests through regular labs for a wide range of viruses and other infectious agents (including other tick infections)
• Tests through regular labs for Complete Blood Count (CBC), Comprehensive Metabolic Panel (CMP), thyroid function, celiac disease (gluten intolerance), vitamin D, homocysteine, hemoglobin
• A more sensitive follow-up test for celiac when the first one showed some gluten sensitivity.
• We had already done 23andme genetic testing and sent the results through MTHFRsupport analysis - the genetic specialist looked at that, plus sent our data through another analysis tool.
• Saliva testing for cortisol and adrenal function (in progress).
• DNA Connections urine test Lyme panel (recommended but not yet done).

The Diagnoses
Based on all those tests, we went back for a follow-up visit with both practitioners and learned a lot (some we already knew but much of it was new, recent, and surprising):

• Severe overgrowth of bacteria in GI tract - the GI Effects test showed that he had very high levels of more than a dozen different nasty pathogens. The genetic specialist could point to specific pathogens and tell us what symptoms they caused, including the burning pain in his stomach, joint pain, and anxiety.
• Low hydrochloric acid in stomach, which contributes to some of his GI symptoms.
• Slightly low (low-normal) Total T3 (a measure of thyroid function); other thyroid measures normal.
• Celiac disease/gluten intolerance (something we never suspected).
• Low vitamin D3 - astounding since he takes 5000-10000 IU per day, though he wasn't taking all his meds the past few months since he often couldn't hold food or medicines down.
• Viruses: EBV, CMV, HHV-6 - all previously negative and now present.
• West Nile Virus - another big surprise.
• Babesia - negative (confirming our former LLMD's conclusion that he got rid of this one infection).
• Bartonella - 2 strains present.
• Lyme - equivocal results but likely, given his history and symptoms.
• Though babesia is gone, many other unidentified protozoa showed up in the blood smear.
• Lots of biofilms in his blood (sticky clusters of cells - Lyme bacteria is known to convert to biofilms, which is part of what makes it so hard to treat).
• Yeast overgrowth (which we already knew about and have been treating). 
• Genetic results showed he may be an over-methylator.

The Treatments

•  Nrf2 Activator (a Xymogen product) -  to activate the Nrf2 genetic pathway (per his genetic results - this is one of two genes present in those who don't respond fully to treatment for Lyme disease). This pathway regulates the production of important molecules that impart antioxidant activity, such as glutathione and superoxide dismutase (SOD). It also regulates the production of detoxification enzymes.
• Resumed A-Bart and started A-L Complex, herbal formulas for bartonella and Lyme, respectively, that are part of the Byron White protocol. He'd previously responded well to A-Bart. He is VERY sensitive to tiny doses of any tick infection treatments, so he is only taking 1-2 drops of each per week so far and having to build back up very slowly.
• Added CBD Oil, as needed for nausea, vomiting, stomach pain, joint pain, and anxiety - it's been very, very effective for him in controlling these symptoms in the short-term, while we work to eliminate their causes in the longer-term. We are using the Plus CBD Oil brand, which we buy at our local natural foods store and have found to be effective. Sometimes he buys edibles at a local dispensary.
• Cytomel 5 mcg (Rx) - a tiny dose for his slightly low thyroid T3.
• OrthoDigestzyme - 1 pill upon waking, gradually working up to 3 per day, before meals - to treat bacteria in GI tract, stomach pain, nausea, vomiting, and lack of appetite. Saw immediate improvement from the first week. 

• Changed Probiotics - stopped all probiotics he was taking, except saccharomyces boulardii (for yeast) and added UltraFlora Integrity - to treat bacteria in GI tract, stomach pain, nausea, and yeast overgrowth.
• ATP 360 - 1-3 per day for improved mitochondria function and energy production.
• P-5-P 25 mg - an active form of vitamin B6 that I was already taking.
• Mega Mycobalance - 5 capsules 1-3 times a day - for yeast overgrowth 
• Stopped methylcobalamin (B12) injections - continuing hydroxycobalamin (B12) injections (Rx) every other day only (due to genetic results).
• Reduced 5-MTHF (20 mg - we buy both 15 mg (at link) and 5 mg) from every day to 3x/week (due to genetic results).
• Moved Magnesium-l-threonate from afternoon to bedtime (3 pills) to help sleep. 
• Switched from acetyl-l-carnitine to Carnitine Synergy, a product that includes both acetyl-l-carnitine and carnitine.
• Eliminate gluten from diet.
• Rinse with Biocidin after brushing teeth - to help with certain oral bacteria found in his GI testing. 
• Eat 2 Tablespoons of navy beans twice a week to help with Collinsella bacteria.
• Added Boluoke (1 pill twice a day) to help break up biofilms.

  
Results So Far

• Stomach pain, nausea, loss of appetite are all greatly reduced and vomiting is now rare. He can eat again, hold down his food, and is beginning to gain back some weight.
• He's working as a waiter 2-4 nights a week.
• Anxiety is reduced, though still an issue.
• His average daily rating of how he feels (on a scale of 1 to 5, where 1 is good and 5 is incapacitated) has improved from a low of 3.3 to 2.8.
• His % of time crashed (at a 4 or 5) each month has improved from 42% to 19%.
• He's had the energy to enjoy time with friends or his girlfriend several times a week.

So, he is doing better, improving slowly but surely. He is continuing to work on diet and increasing the dose of the new supplements listed above. He has more testing to do (the saliva test and the follow-up GI testing through Ubiome), and follow-up appointments at the end of August. All these new supplements on top of the many pills we already take are a lot to keep track of, but we're helping him to juggle it all.

Now you see why I haven't had as much time for blogging or social media this summer! This crisis was frightening for all of us, and he really hit bottom by May, but we are hopeful that he will continue to improve. His goal is to make use of that engineering degree and get a full-time job so he can support himself.

I recognize that his particular set of problems is both unique and complex, but I thought that elements of what he's been dealing with would be helpful to others. In particular, I highly recommend the GI Effects testing kit from Genova Diagnostics - we learned so much surprising information from that.

UPDATE 4-11-23: Shortly after I wrote this, the Genova test became unavailable. Our medical team now uses the Gut Zoomer test from Vibrant Wellness, which my son recently took again to see how he's doing. I also used the Gut Zoomer test two years ago when I developed chronic diarrhea.

With the help of this test and treatments recommended from our functional medicine specialist, my GI function is now back to normal.

Another finding from this and later tests was that my son is severely gluten intolerant (perhaps even has celiac disease). Eliminating gluten from his diet led to further, giant improvements, not only in his GI symptoms but in energy and overall well-being. He is so much better now that he recently started his first-ever full-time job in his professional field (he is 28 and got ME/CFS at age 10). A large part of his improvement came from finding and treating GI problems, since a large part of the immune system is in the GI tract.

UPDATE 2-24-26: Our son continues to do very well, even though he still has ME/CFS, Lyme, and bartonella. He has lived independently since 2020 with his girlfriend and has supported himself for several years now. He works full-time at a job with requires both physical and mental exertion and even worked 6 days a week for a while. He still sometimes crashes (the 6-day work weeks are rarer now), if he overdoes or if he catches a virus, but he recovers quickly. He took no sick days at all in his first 18 months of working at this job! Some specific updates:

• He still takes A-Bart and A-L Complex from Byron White to treat bartonella and Lyme. He is still ultra-sensitive to treatment and Herxes if he increases it too fast. He's currently at about 10 drops of each, twice a day.
•  He has continued to stick to a fairly strict gluten-free diet and tries to avoid sugar (most of the time!). If he splurges on something with gluten in it, he gets GI symptoms afterward.
• He gradually stopped a lot of his supplements, but he still takes Boluoke and GastrAcid daily. 
• He is back to a healthy weight and has good energy. He enjoys doing things with his friends, family, and girlfriend.
• He still has some mild anxiety, but is doing well in a job where he's interacting with the public every day. 

 

Have you dealt with any similar GI or tick infection problems? 

Or found some effective solutions to some of these problems? 

Please share your experiences in the comments below.

You can also connect with me on Instagram,  Facebook ,and Twitter.  

ME/CFS Treatments & Blog Updates

It probably seems like I haven't been posting much here on the blog lately, but I have been working hard behind the scenes to update older posts - mostly those about treatments for ME/CFS, since they are the most popular - and to make it easier to find what you need when you visit the blog. Here's a quick recap.

I added two new pages to the blog - those are the tabs that run across the top of the page, just below the title and description of the blog, and are always there, no matter what posts you navigate to (there are also pages for TV and Movie Reviews, for fun!).

• Our Story - a brief essay describing our own story, how first I got ME/CFS and then my two sons also got it two years later, and our challenges and progress through to today, with links to more information where appropriate.
• ME/CFS Treatments - this is mostly a reprinting (with some updates) of one of my most popular posts. It provides an overview of ALL the treatments that have most helped my sons and I over the past 15 years, with links to more detailed blog posts within each topic. You can use this page as a roadmap for your own treatment, using the tips there and making sure you are treating all aspects of ME/CFS. Thanks to these treatments, my oldest son and I now live active, almost-normal lives again (my younger son recovered fully from ME/CFS after 10 years of mild illness).

I have also spent a lot of time updating older treatment posts, again focusing on those that have been most popular over the years. I started this blog in 2006, so a lot has changed in that time! Sometimes I rewrote the post to update the information or explain it better and sometimes - if the post was still accurate - I added an addendum to the end with any new developments and an update on our own use of that treatment. Here are some of the posts I have updated:

• Orthostatic Intolerance and ME/CFS - OI is an integral part of ME/CFS and all patients have some form of it - this post explains what it is and how to diagnose and treat it. It is very treatable and often dramatically improves all ME/CFS symptoms!
• Heart Rate and Post-Exertional Crashes in ME/CFS - a topic closely related to OI, this post explains how you can track your heart rate and use that information to avoid post-exertional crashes.
• The Methylation Cycle: Central to ME/CFS - an essential topic for all those with ME/CFS, about how to improve methylation, a process related to energy production, brain function, hormone production, and ability to detox that is dysfunctional in those with ME/CFS. Lots of ideas here on improving methylation, and many of them you can try on your own.
• Vitamin B12 and ME/CFS - this topic is a part of improving methylation but is complex enough that it needed a separate post! I explain why we all need B12 supplementation and the various options available.
• Treating CFS Sleep Dysfunction - one of my oldest treatment posts, and one of the critical steps to treat first. This is about how to actually correct the sleep dysfunction at its root so that your sleep is normal, natural, and refreshing every night, not about using sedatives to mask the problem.
• Immune System Abnormalities in ME/CFS - not updated recently (because the information is still up-to-date), but an essential one to read first so you will understand the following treatments for immune system dysfunction, which are absolutely critical to improving with ME/CFS since it is at the heart of the disease.
• Low-Dose Naltrexone Update and Dosing - one of several simple, inexpensive treatments available to help normalize your immune system.
• Imunovir Update and Inosine - another cheap immune system modulator that has greatly improved everything for us - inosine is sold as a supplement, so you can even try this on your own.
• Increasing Glutathione in ME/CFS and Related Illnesses - another thing that helps to normalize the immune system, but it is also essential for energy production, detox, and more. It's a naturally occurring compound in our bodies, but people with ME/CFS just don't make enough of it. Post includes lots of options for increasing glutathione and was just updated this week with news of a new nasal spray!
• Treating Yeast Overgrowth/Candida - a common problem in ME/CFS patients because of our immune dysfunction, this can make you feel terrible though you may be completely unaware that you have it! Lots and lots of options for treating.

Those are just the posts that I have updated most recently. For a full overview of all the treatments that have helped us and how they fit into the bigger picture, visit that new tab, ME/CFS Treatments.

Thanks for your patience as I try to keep everything up-to-date here and make it easier to use. It's been 12 years and 1269 blog posts, so that's a lot to keep up with!

Great News! Glutathione Now Available as a Nasal Spray!

Copyright: sudok1 / 123RF Stock Photo

I wrote a post here about a year ago about Increasing Glutatathione in ME/CFS and Related Illnesses and about the improvements my son and I have seen from adding glutathione injections to our treatment regimen. You can read that post for more details on exactly what glutathione does, why it's important, and what roles it plays in our illnesses.

The bottom line is this: glutathione is a naturally occurring compound that people with ME/CFS, fibro, Lyme, and similar illnesses don't make enough of. Glutathione is crucial for methylation, energy production, detox, improving exercise intolerance, and immune function, so increasing glutathione (helping to give our bodies more since they're not efficient at making enough) can have ample positive effects on almost all of our symptoms. Oral glutathione supplements are poorly absorbed and don't get into the cells well, where they need to be to help. Until now, the best approaches were IVs or intramuscular injections. That post also explains the improvements we've personally seen from glutathione.

So, fast-forward to today. I have kept up the twice-weekly glutathione injections and have seen great benefits from them. Among other things, I went from getting bacterial bronchitis 4-6 times a year to not getting it at all for over 18 months! The downside is that intramuscular injections use a large needle and are painful...though I've gotten better at it with practice. My son hasn't kept up with his glutathione injections regularly, in large part because of the difficult and painful injections.

So, I was thrilled to hear recently that glutathione is now available as a nasal spray! I checked with our ME/CFS specialist, Dr. Susan Levine, who confirmed that it was true and assured me that the nose spray is even more effective than IV's or injections - and no needles!

Glutathione nasal spray is available through any compounding pharmacy (Skip's Pharmacy in Florida, a well-respected compounding pharmacy that provides many ME/CFS patients with low-dose naltrexone, is one option). The price is similar to what we were paying for injectable glutathione. We immediately filled a prescription for the new nose spray for my son.

He has been using the glutathione nose spray for a few weeks now. He just uses one squirt in one nostril each day. Because it's daily, it's much easier for him to remember it consistently than the twice-weekly injections...and he's not avoiding it because of pain. He says he is already noticing improvements in energy and how he feels overall. I am hoping this will also help with his recurring bronchitis, as it did for me. I am finishing up the injectable solution we have, and then I will switch to the nasal spray, too.

Glutathione can help improve SO many different aspects of our illnesses. Now it will be more accessible to more people - that's reason to celebrate!

NOTE: That earlier post on glutathione also lists additional ways to boost glutathione.

UPDATE 4/12/18:
If you can not get a prescription for glutathione nasal spray, there appear to be two commercial brands on the market called GlutaQuick and GlutaStat, which you can search for online, but it is a bit more expensive (I've included links to two sources).

NOTE: Do NOT buy glutathione mouth sprays - the pH in our mouths immediately render the glutathione unusable, and it never gets into the bloodstream where it is needed - these are just a waste of money (and if you search for glutathione nasal sprays on Amazon, a bunch of mouth sprays will come up, so read carefully).

Our experience after 2 months? My son switched to the nose spray back in February, as soon as we found out about it. He admitted to me that he hadn't been doing the IM injections because they hurt too much (they definitely take some practice to master), so we switched him immediately (I am using up the last of the injectible solution we have and then I will switch, too). So, it's been about two months for him. His energy is improved, he remembers it most days, and he is still using that first bottle we bought, so it lasted awhile. Best of all? He came home from spring break two weeks ago with some chest congestion, which for him always means bacterial bronchitis. This time, though, he felt fine after a few days of coughing, and he did not need to go on antibiotics - hurray! So, the glutathione seems to be having the same positive immune system effects for him that is has for me...and the nasal spray is much easier, more convenient, and far less painful for him to use. I'm switching, too!

UPDATE AUGUST 2021: 

We have both been using glutathione nasal spray daily for three years now, and it still works very well for us. My son also periodically gets glutathione IVs, which are very effective and give him a big boost, when he visits his Lyme specialist. More info on other ways to increase glutathione here. It's absolutely essential for healthy immune function, detox, energy production, and more!
 

Throwback Thursday: Improving Methylation

Today's Throwback Thursday is another topic that has been critical in the improvements we've been able to make in our conditions. I covered Treating Orthostatic Intolerance and Treating Immune Dysfunction in earlier Throwback Thursday posts, and this one is right up there in importance when it comes to treating ME/CFS and seeing improvement in your level of functioning and quality of life.

The Methylation Cycle (click to enlarge), from ProHealth website

The methylation cycle is a group of processes that happen in our cells to help with hormone production, detox, neurological processes, and more. Methylation is part of normal healthy functioning in any person and is extremely important for ME/CFS patients because it is usually dysfunctional (like everything else!).  The best way to explain it is simply to point you to my blog post, The Methylation Cycle: Essential to ME/CFS because it's complicated, and I worked hard to explain it simply in that post, including how to treat with supplements to improve methylation, which should result in overall improvement in your condition.

One critical component of treating methylation is supplementing with vitamin B12, an essential nutrient that is difficult to get from food sources and plays a significant role in methylation. I explain it all in this post, Vitamin B12 and ME/CFS, which includes our own experiences with different types of supplements.

Glutathione is another essential component in the methylation process that people with ME/CFS don't make enough of on our own. This post on Increasing Glutathione in ME/CFS and Related Illnesses explains the role of glutathione and how to get more of it, from diet, supplements, and injections.

Dietary changes are often crucial  to improving methylation and can sometimes bring immediate improvement due to food intolerances you didn't even know you had. One study showed that a full 30% of the young patients with ME/CFS studied had a dairy intolerance! This post, Eating Paleo for Immune Disorders: Our Approach explains the dietary approach we use, based on research and advice from our doctors and dietician and how it has helped us, with lots of tips on what to eat so that it doesn't feel too restrictive, including tasty treats!

Treating and improving methylation was one of several critical factors that quickly improved our son's condition and allowed him to start college on time, as I explain in the post on How My Son Went From Couchbound to College.

All of this is absolutely crucial for any ME/CFS patient, but some of it is complicated. If cognitive problems keep you from understanding any of these posts, please pass them along to a friend or family member who can help you - or a doctor or dietician.

One great thing about improving your condition by improving methylation is that you don't necessarily need a doctor (though, of course, it's always best to consult with one, if available). For many people in areas where there are no doctors even willing to listen and learn about ME/CFS, that makes this one area of treatment that you can try on your own.

I'd love to hear about your own experiences! Have you tried any treatments to help improve methylation? What was the outcome?

Increasing Glutathione in ME/CFS & Related Illnesses

Glutathione Molecule (Ben Mills - Own work, Public Domain), Link

[NOTE: I am not a doctor. This post describes our own personal experiences and what I have learned from research and our medical team.  You should work with your own doctor on your own unique case to find what works for you. Don't have a doctor who understands how to treat ME/CFS? This post explains how to find a doctor who can help you. You don't necessarily need an expert - just someone willing to learn more and work with you.]

UPDATED 6/28/23

Since the first years of my illness, 15 years ago, I have been hearing how important glutathione is to ME/CFS patients (and those with fibromyalgia and Lyme disease, too). It's taken me all these years, though, to finally learn more about glutathione, understand why it's so important, and see the full positive effects of increasing glutathione.

My son and I saw our ME/CFS specialist, Dr. Susan Levine, in September last year, and she asked what our biggest problems were. I said immune system dysfunction because both of us struggle with chronic yeast overgrowth, and we both get bacterial bronchitis multiple times (sometimes up to 4 or 6 times) a year, which requires antibiotics, which in turn makes the yeast problems even worse. Since we already take the top two immune modulators typically used for ME/CFS - low-dose naltrexone and inosine (aka Imunovir)--and both have helped us (especially in reducing virally-triggered crashes)--she suggested we add something new: intramuscular (IM) glutathione injections.

So, we started those after our visit, twice a week, and wow, what a difference it has made! I just went through an entire winter without getting bronchitis once (I usually get it 2 or 3 times a winter), and I get a big energy boost from the glutathione, too. My son has trouble remembering to do his glutathione injections regularly while at college, but when he does, he also notices increased energy and well-being. I am trying to remind him to do them regularly in the hopes that he will also get less bronchitis this year (he had a typical winter, with 3 bouts of bronchitis). It should also help with his Lyme disease and the Herx reactions (worsening) that result from treating it.

Update: As soon as glutathione was available through compounding pharmacies s a nasal spray, we switched to that form. Our doctor said it's even more effective than the intramuscular injections ... and far less painful! This helps us both to keep up with it better, using the nasal spray every morning. We made that switch over five years ago, and it's still working well for us.

What Is Glutathione and Why Is It Important?
In the simplest terms, glutathione is a naturally occurring compound in the human body, a strong antioxidant that helps our bodies to deal with toxins. It is a product of the methylation cycle, which is of primary importance to ME/CFS and long-COVID patients (and those with fibromyalgia and Lyme) and usually severely dysfunctional (see information at the link on how to improve methylation). A lack of glutathione can lead to oxidative stress, which has been shown to be a large part of the exertion intolerance (aka Post-Exertional Malaise or PEM) that is a defining characteristic of ME/CFS.

The Wikipedia entry for glutathione says that the human body makes plenty of glutathione on its own, so it does not need to be supplemented. That is true for healthy people, but glutathione levels have been shown to be low in those with ME/CFS, contributing to low energy, immune dysfunction, detoxing problems, and exercise intolerance. Since our bodies can't make enough glutathione on their own, increasing glutathione through supplementation can be a helpful treatment for ME/CFS patients. My son and I have found it to help increase energy, reduce exercise intolerance, and improve immune function.

How Do I Increase Glutathione?
Increasing glutathione in your body to normal levels is not as simple as just taking a single pill. There are multiple approaches that include helping your body to make more glutathione on its own and supplementing with certain forms of glutathione that your body can use effectively.


Glutathione Precursers:
One way to increase your body's production of glutathione is to give it more of the raw materials (precursers) that it needs to make glutathione (links are to our favorite products). These include:

• Milk Thistle
• N-Acetyl-Cysteine (NAC)
• Turmeric/curcumin (not technically a precurser but curcumin--the main ingredient in the spice turmeric--encourages production of glutathione in the body and helps with detox)
• Undenatured whey protein (read the label to ensure it has no additives--this is our favorite brand)

[NOTE ON WHEY: For many years, I knew that whey was an important precursor to glutathione but thought that my son and I couldn't eat it because we are dairy intolerant (as are 30% of ME/CFS patients, according to a recent study). I was thrilled when our dietician/biochemist explained that when whey is separated from the rest of milk (the curds--remember Miss Muffet, eating her curds and whey?), almost all of the lactose and most of the casein (a protein in milk) is in the curds, leaving whey to be well-tolerated by many people who are dairy-intolerant. We tried it and were happy to discover she was right--we can both tolerate whey protein powder with none of the usual side effects we get from full dairy products.

UPDATE 6-28-23: I have recently discovered through food intolerance testing that I am sensitive to lactose, casein and whey! So, I tolerate it once in a while and still have my favorite Paleo smoothie once or twice a week, but I can't have it every day. But that's me. If you're just lactose-intolerant, then you shouldn't have a problem with whey.]

Supplementing with Glutathione:
Although it is tricky to supplement directly with glutathione--to get it into the cells where it can be useful--there are several approaches that can work:

• S-Acetyl Glutathione - a form that can get into the cells - our dietician recommended we take this at bedtime.
• Liposomal Glutathione - glutathione that is encased in little fat spheres (to put it simply!) that enable it to get to the cells where it is needed. Available in liquid or softgels. We used this before we switched to injections (it tasted pretty nasty back then, but now it says "new improved flavor!"). Note that any kind of oral glutathione, including liposomal, is less effective than injections, IV's, or nasal spray.
  
• Intramuscular injections or intravenous glutathione - these deliver glutathione directly to the bloodstream. When we switched from liposomal glutathione to intramuscular injections, we definitely noticed an improvement. I went from getting bronchitis 4-5 times a year to going over 18 months without getting it once! Occasionally, we each get IV glutathione from our Lyme specialist, which is even more effective. Injections require a prescription and must be obtained through a compounding pharmacy (which is simple and inexpensive).
• Glutathione Nasal Spray - a newer way to get glutathione directly into the bloodstream--as effective (maybe even more so) as injections but without the pain! Also requires a prescription through a compounding pharmacy--see UPDATE at the end of this post for details).

If you are squeamish about self-injections, I am living proof that it can be learned! After years of taking B12 sublingual tablets, while my son did B12 self-injections, he finally said, "Quit being such a baby, Mom! You know the injections are more effective." He was right--I switched to B12 injections at the same time that I started my glutathione injections. We do B12 subcutaneous injections (under the skin) which are tiny amounts and tiny needles, and he was right; I barely feel them. The intramuscular (IM) injections for glutathione require a longer needle and take a little more practice to master, but after 6 months of doing it twice a week, I got pretty good at it and they barely hurt at all. I recommend this how-to video from the Veteran's Administration to learn how to do your own IM injections. Note that B12 is another critical component in improving methylation.

How To Get Started
It's always best to start with a doctor or other knowledgeable medical personnel (like our dietician who also has a MS in biochemistry or our functional medicine specialist). You can see one of the ME/CFS specialists - there are about a dozen across the U.S. and others overseas - or a local doctor or other medical professional who understands ME/CFS or is at least willing to learn. If necessary, print some of the information from this post and its links to help educate your doctor. Most of the treatments listed above are supplements that don't require a doctor, but it is always good to consult with one, if you have one who understands ME/CFS. See Finding a Doctor for lists of specialists and tips on finding one who can help.

You can start with the prescursors listed above, to help your body produce more glutathione on its own. ALWAYS--as with any ME/CFS treatment--start very slowly and go gradually. Begin with just one supplement, at a low dose, and see how you tolerate it. Improving methylation and increasing glutathione can sometimes produce a temporary worsening (a Herx reaction), as your body improves its ability to deal with toxins and moves them into the bloodstream to get rid of them. The best approach to a Herx (worsening) is to reduce the dose to where the Herx is tolerable and wait to increase until you are at least back to baseline or feeling better.

Milk thistle is an ideal supplement to start with, if you aren't already taking it. It has multiple functions, most importantly helping to improve liver function, i.e. helping your body to process medications and supplements as well as harmful byproducts that your body produces. By starting with milk thistle and improving liver function, you can both increase glutathione and help your body to tolerate additional supplements. Turmeric or curcumin also has multiple purposes, helping to reduce inflammation, improve detox, and increase glutathione.

When I added NAC (many years ago), I felt an immediate improvement in energy, so that is a good one to add next. My son and I also both get a nice boost from whey protein powder, too--we use it in smoothies. This is our recipe for a Chocolate-Banana Smoothie--our favorite lunch! Tastes decadent and has several ingredients that help with energy.

The S-Acetyl Glutathione is absorbed differently by your body, so it can be used WITH either liposomal glutathione or injections/nasal spray (but the liposomal and injections/nasal spray are either/or). You can buy liposomal glutathione as a supplement in various forms, but the injections or nasal spray require a prescription (you get it from a compounding pharmacy, which is simple and inexpensive).

(Note that if money is an issue, milk thistle, NAC, and curcumin are all fairly cheap and quite important. Injectable glutathione is MUCH cheaper (and far more effective) than liposomal glutathione in either liquid or pill form. Whey powder seems expensive but one of those big canisters can last quite a while (and you can get a smaller canister). Beware of buying whey powder at the drugstore or grocery store--read the labels carefully as many of the more common commercial brands sold for athletes have LOTS of additives.)

As with any treatments for ME/CFS, START LOW AND GO SLOW! Add one supplement at a time, starting with a low dose, and increase as tolerated.

I highly recommend you also take a look at this article on Phoenix Rising on Augmenting Glutathione in ME/CFS. It was written by Rich Van Konyenburg, who also developed one of the first methylation protocols and was one of the first to recognize the importance of glutathione in ME/CFS.

I have included some links in this article and below to the products we have tried and found to be effective for increasing glutathione. A few notes:

The Natural Force whey powder is a 'cleaner" product with no added ingredients, but we like the taste of the Bluebonnet brand better (it has natural vanilla flavor and MCT oil added in, which is also good for us and that's two fewer ingredients to remember when we make our smoothie!  

Curcumin is a potent anti-inflammatory, as well as encouraging production of glutathione. Meriva is a brand of phytosome curcumin that our dietician likes as it is well-absorbed. My husband and I now take curcumin with black pepper, as that also helps with absorption. Either of those is a great choice.- It has been very helpful for all of us for joint pain and managing Herx reactions, in addition to its role in promoting glutathione production.

Please let me know if you have any questions. If you have any experience in increasing glutathione, please share it in the comments below, so we can all learn from each other!

 
UPDATE 4/12/18:
There is a new form of glutathione delivery now available - a nose spray that is even more effective than injections! No more big needles! It can be obtained from a compounding pharmacy (the concentration is either 100 or 200 mg/ml in plain saline), and the dose is 1-2 sprays in ONE nostril each day (alternate nostrils each day). Our ME/CFS expert doctor explained that the nasal spray is safe and effective, and this study bears that out (great for sharing with your doctor).

The best approach is to get a prescription from your doctor and order it from a compounding pharmacy (this post explains details and links--Skip's is a great source but most compounders can make it). 

If you can not get a prescription, there appear to be two commercial brands available: Ageless Rx and Glutastat (though this has other added ingredients in it)

NOTE: DO NOT buy glutathione mouth sprays. The pH in our mouths immediately renders the glutathione unusable, and it never gets into the bloodstream where it is needed - these are just a waste of money (and if you search for glutathione nasal sprays online or on Amazon, a bunch of mouth sprays will come up, so read carefully).

Our experience? My son switched to the nose spray back in February 2018, as soon as we found out about it. He admitted to me that he hadn't been doing the IM injections because they hurt too much (they definitely take some practice to master), so we switched him immediately (I used up the last of the injectible solution we had and then switched, too). His energy improved, he remembers it most days, and he is still using that first bottle we bought, so it lasted awhile. Best of all? He came home from spring break two weeks ago with some chest congestion, which for him always means bacterial bronchitis. This time, though, he felt fine after a few days of coughing, and he did not need to go on antibiotics - hurray! So, the glutathione seems to be having the same positive immune system effects for him that is has for me...and the nasal spray is much easier, more convenient, and far less painful for him to use. I'm switching, too!

UPDATE 5/7/20:

With a steep downturn in his health this year (due to his tick infections), my son also started a weekly glutathione IV (and also a weekly Myer's Cocktail IV, a mix of vitamins and nutrients). This helped him immensely, with both energy and his severe Herx reactions, finally allowing him to slowly increase the dose of his treatments. He had to quit the IV's temporarily during the coronavirus pandemic and is definitely missing them. He and I both still take the nasal spray daily.

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

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