What Is ME/CFS? The Basics: Answers to Common Questions

The positive response to my 3-minute video short about ME/CFS for Awareness Day/Month was so great that I realized a longer video with more information about ME/CFS and long-COVID was needed. I searched online for the most commonly asked questions about ME, myalgic encephalomyelitis (also known as CFS or chronic fatigue syndrome) and recorded the video in a Q&A format, covering the basics. Note that I also explain in the video what long-COVID is and how it can be the same as or different than ME/CFS. 

In the video, I answer these questions:

• What is ME/CFS?
• What are the symptoms of ME/CFS?
• What does the name ME/CFS mean and where does it come from?
• What causes ME/CFS? 
• How prevalent is ME/CFS and who gets it?
• How is ME/CFS diagnosed?
• How is ME/CFS treated?
• Can ME/CFS be cured? 

You can watch the video on YouTube or I will include it below:

This video is perfect for sharing with friends and family to help them better understand how ME/CFS and/or long-COVID affect you.

Note that while I briefly discussed effective treatments for ME/CFS and long-COVID in the video, you can find a summary of ALL the treatments that have helped my sons and I here. 

 

Do you have other questions about ME/CFS and long-COVID not addressed in the video?

 

Have you had trouble explaining your illness to friends and family? 

  

Share your experiences (or any questions) in the comments below.

 

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

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.

 

ME/CFS, Lyme & COVID: Relapses and Recoveries

I'll admit I've been procrastinating on writing this post because a) the cycle of relapses and recoveries kept extending, and b) well, it's complicated!

So, here I will simplify it as much as I can: what I've been through the past 2+ years and what I think helped me get back to my "normal" baseline (which isn't too bad, comparatively!).

 

Timeline:

March 2020 - I suddenly and inexplicably got worse. I'm still not sure exactly what triggered the relapse (I tested for COVID over and over since the timing was suspicious but had no sign of infection or even exposure back then). My best guess is that my Lyme got worse because I wasn't treating it effectively and caused a cascade of worsenings/relapse.

That relapse continued for over a year, though things very gradually improved, as I added new/revised treatments (see below).

May 2021 - I was finally feeling good again, after many treatments and a gradual improvement over many months--pretty much back to my "normal" baseline.

May & June 2021 - I got my two COVID vaccines. I chose Moderna because data showed it caused the fewest long-term relapses among those with ME/CFS. They definitely worsened my overall condition & symptoms again.

Late November 2021 - Once again, I had gradually improved (plus some treatments helped) and was back to my "normal" baseline again, able to be active and enjoy the holidays.

January 5, 2022 - I caught COVID at my father-in-law's nursing home, where they had a big outbreak (he and my son also caught it). I was severely ill--mostly bedridden--for about 3 weeks and then began showing small improvements, very gradually.

I continued to feel worse than usual for the next four months, though there was some very gradual improvement. I could tell my immune system was stuck in an over-active state because of heavy fatigue and constant flu-like achiness.

End of April 2022 - With my doctor's help, I tried a somewhat risky treatment, but it worked, and I returned to my "normal" baseline with ME/CFS and have remained there since, in spite of a very busy & active May.

 

Treatments That Helped:

So, what helped me get over these relapses and back to my normal (with ME/CFS) level of functioning? It's complicated. I am very analytical and greatly annoyed by unexplained worsenings of my condition! I am also relentless when it comes to trying treatments and finding solutions, so I tried a lot of things. Because I'm analytical, I keep a lot of data, so I have a pretty good idea of what helped the most.

As best as I can tell, these are the treatments that helped me get back to my normal baseline (which is quite good for someone with ME/CFS).

New and More Effective Treatments for my Chronic Lyme Disease:

Even before that relapse that began in March 2020, I saw signs that my Lyme disease was not well-controlled. My right hip was starting to hurt, which is a subtle sign I often don't recognize right away that the Lyme bacteria is shifting into other joints (usually, it affects my knees). So, when I suddenly got a lot worse in March 2020, my first step was to begin seeing my son's Lyme specialist. I hadn't seen a Lyme doctor myself in several years because I thought my Lyme disease was "under control." Ha! Now I know better.

The Lyme specialist immediately began adding new treatments and ramping up older treatments that I hadn't kept up. I brought her new research from Johns Hopkins on which herbals are most effective against Lyme disease (more effective that the prescription antibiotics usually used). She was already familiar with most of that, so between the two of us, we began adding lots of new treatments, including:

• Restart A-L Complex (Byron White protocol, purchased from my Lyme specialist), which I had used off and on for years. She also advised me to increase the dose, up to 30 drops twice a day.
  
• Add Stephania (used cautiously and at lower doses, as it can add to the effects of beta blockers, which I also take). I only took it for a few months.
  
• Add Samento (Cat's Claw).
• Add Biofilm Defense.
• Add Japanese Knotweed (later, in early 2021)--one of the herbs determined to be most effective in that Johns Hopkins study.
• Add Crypto-Plus (purchased from my Lyme specialist)

All of these treatments together--especially the increased dose of A-L Complex and addition of Knotweed--led to eliminating my Lyme symptoms and improving my overall condition, gradually.

 

Treating Reactivated Viruses:

It's an old story in ME/CFS--our immune dysfunction causes old, dormant infections to reactivate, especially herpes-family viruses, like Epstein-Barr Virus, HHV-6, CMV, HPV1, and others. 

In my case, testing showed that EBV and HHV-6 were--once again--very positive and reactivated, probably from the Lyme infection going untreated and triggering a domino effect of immune dysfunction. 

I also tested positive for adenovirus, which was curious because it's a common virus that normally causes a mild cold in healthy people but not something that typically pops up for me. This could also have been a contributing factor in triggering my long relapse--exposure to a simple cold virus. It has stayed in my bloodstream since then, so I avoided the J&J vaccine, which was based on an adenovirus.

For these ramped-up viruses, we added/increased:

• Restart Famvir (famciclovir) and then replaced it with Valtrex (valaciclovir) a few months later--I take these prescription antivirals that work against herpes-family viruses every few years when mine get too active again. I'm still on Valtrex.
  
• Add L-lysine, a potent herbal antiviral.
  
• Increase doses of olive leaf extract and emulsified oil of oregano, two herbals that are effective antivirals, antibacterials (so help with the Lyme, too), and antifungals.

 

Diagnosed and Treated Hypothyroidism:

In early 2021, my Lyme specialist ran a full thyroid panel, and much to my surprise (because I get my thyroid tested pretty often), this time it showed low T3. She began treating me with a very low dose of Cytomel (liothyronine). Later, after repeat testing showed it was still slightly low, she increased the dose a bit.

I didn't necessarily see an immediate improvement in symptoms, but having a messed-up thyroid couldn't have been helping me. And I did immediately lose seven normally very hard-to-lose pounds!

 

Supported Immune System

In preparation for the COVID vaccines, I took the advice of ME/CFS experts and added some vitamins and minerals to further support healthy immune function. I was already taking most of the supplements they recommended, but I added/increased a few:

• Increased selenium
• Increased zinc and switched to a more readily absorbed form (zinc glycinate)
• Added liposomal vitamin C (1g per day)--the liposomal form is less likely to cause stomach upset.

 

Increased Inosine

Finally, though this also falls under the category of supporting my immune system, I am listing it all by itself because it's really important.

ME/CFS is, at its heart, an immune disorder and most of our symptoms stem from that dysfunctional immune system. We have found three treatments that help to normalize the immune system (in addition to treating underlying infections) that have greatly helped to improve our conditions over the years:

• Glutathione
• Low-Dose Naltrexone (LDN)
• Inosine

Find more details on all of these immune system treatments, which are all inexpensive and readily available, in my blog post on Treating Immune Dysfunction in ME/CFS.

So, I was already taking all of these, but purely by mistake, I increased my dose of inosine in November 2021--I just miscounted the pills in my weekly reminder boxes one week! I simply went up from 5 a day to 6 a day for my "high dose" weeks (you alternate weeks with high dose and low dose), and like magic, after months of struggling, I finally returned to my "normal" ME/CFS pre-vaccine baseline.

 

Post-COVID Desperation and Steroids: 

So, I was already doing all of that above when I got COVID in January and went into another relapse afterward. For four months, I struggled with severely worsened fatigue, constant flu-like aches, never feeling good, and about 2-3 days a week, completely crashing so badly that I was couchbound or bedridden. I was also severely limited in what I could do.

Since this relapse was definitely triggered by my COVID infection, my ME/CFS specialist tried--and tried and tried--to get me COVID antivirals, but between limited supply and restricted use, I was unable to get them.

If you have lingering symptoms post-COVID (worsened ME/CFS and/or "long-COVID"), this should be the first thing you try: antivirals specific to COVID. There are two currently on the market, and they should continue to become easier to access: Paxlovid and Molnupiravir.

I did finally get molnupiravir but never had a chance to try it because by then, we had tried something else.

My constant flu-like achiness (like recurring sore throats or swollen glands or feeling feverish) told my doctor and I that my immune system was still in overdrive, over-reacting even though the acute viral stage was over. Given this, I asked if I could try a very short course of steroids, and she agreed. 

Steroids suppress the immune system, so they are usually not a good idea for those with ME/CFS (and definitely not long-term). Although parts of our immune systems are overactive, other parts are underactive, so suppressing the entire immune system is normally not effective for us and can do some harm.

The idea in this case was to try a very short course of steroids--just five days of low-dose prednisone--to temporarily calm down my immune system, with the hopes that when I went off it, my immune system would come back up in a more normal state. And it worked! Since then, I have felt pretty good (for me), back to my "normal" ME/CFS baseline and able to be more active again. And no more aches!

Steroids are not without risk, even when used short-term. They suppress your immune system, making you more susceptible to infection, so for that week, I was even more careful than usual, avoiding people and crowded places and wearing my mask even more diligently than usual. 

In addition, I had a very uncomfortable side effect: my normally high heart rate rose even higher. The first day I took prednisone, I woke from my nap (lying in bed), with my heart feeling like it was going to leap right out of my chest. That afternoon and evening, my heart rate--which is normally well-controlled with low-dose beta blockers--was 130 bpm lying down with my feet up! I contacted my doctor, and she quickly called in some extra beta blocker (just a small additional dose of what I already take) for me to take in the afternoons while on prednisone. That helped a lot.

Lessons Learned

So, all of this may seem very specific to me and my situation--and it is--but all of it is applicable to anyone with ME/CFS or long-COVID because these were all common problems underlying our disease. Some things that everyone with ME/CFS or long-COVID can try:

• Diagnose and treat underlying infections--because of our immune dysfunction, we almost always have infections behind the scenes making things worse: undiagnosed tick infections (very common in ME/CFS), old reactivated viruses, yeast overgrowth, fungal infections (including mold exposure), and of course, in the case of long-COVID, COVID itself. All of these can be diagnosed and treated.
• Check Endocrine Function--the immune dysfunction of ME/CFS messes up our endocrine systems, which are responsible for the hormones that regulate everything in our bodies. So, get a full thyroid panel (not just a screening test), check 24-hour cortisol levels (with a saliva test), and ask your doctor to check other hormone levels. 
• Treat Immune Dysfunction--as I said, this is at the heart of ME/CFS and causes many, if not most, of our symptoms. Normalizing immune function will help to improve everything. More details on simple, inexpensive immune modulators (and also treating underlying infections) in my blog post on Treating Immune Dysfunction in ME/CFS.
• If you are suffering from long-COVID or a lingering relapse of your ME/CFS due to COVID--ask for COVID antivirals, in addition to the other things listed here.
• Effective ME/CFS Treatments--for a full overview of the treatments that have helped my son and I the most over the past 20 years (and the reason why these relapses didn't completely make me bedridden), see my Effective Treatments for ME/CFS post, for our experiences. 

As for me, I am happy to be back to my own "normal," still needing lots of sleep at night and a daily nap but with crashes rare now and able to take walks and do other active things again! I'm slowly regaining my stamina.

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.

 

 

 

 

Rituximab - A Promising Treatment for ME/CFS

Photo from Freeimages.com

I have been watching and reading the ground-breaking research on using a cancer drug, rituximab, for ME/CFS with great interest and wanted to provide a brief update here for those who haven't heard about it yet or who want more information (or, as always here, a simple explanation).

Rituximab is a drug that affects the immune system, used for patients with lymphoma, a form of blood cancer, and also for autoimmune conditions like Rheumatoid Arthritis (RA). There is now growing evidence that it might work for a majority of ME/CFS patients, either greatly improving their symptoms or even providing complete remission.

A simplified timeline of what's gone on so far:

1. In 2004, two Norwegian doctors using rituximab for a group of lymphoma patients noticed that one patient - who also happened to have ME/CFS - was not only cured of his/her lymphoma but that all of his/her ME/CFS symptoms had disappeared as well.
2. Excited by this unexpected occurrence, those same two Norwegian doctors conducted a small, 1-year study of 15 people with ME/CFS in 2011. A full two-thirds of the patients (10), experienced significant improvement on rituximab. Two of those 10 seemed to be completely recovered, even 3 years after their initial doses, and were back at work.
3. In July 2015, results were published from a larger Norwegian study of rituximab in 29 ME/CFS patients, showing that once again, almost two-thirds of the patients (18) responded well and improved significantly, some achieving full remission. Eleven of the 18 who responded were still in remission three years after beginning the treatment, and some have not had symptoms for five years. This study included a variety of ME/CFS patients, ranging from moderate to severe (bedbound).
4. A much larger study, of 150 ME/CFS patients, is now underway in Norway and includes a control group. Results are due to be published around 2017-18.

Can you believe those facts?? Two-thirds significantly better? Complete remission? These are words that many ME/CFS patients never thought they'd hear.

So, how does this miracle drug work?
Rituximab, a cancer drug, wipes out most of the body's B-cells, a kind of white blood cell that makes antibodies. In the ME/CFS trials, the doctors have generally seen a 4-6 month lag in response time after the first dose is administered, which is about the length of time it would take for existing antibodies to be cleared from the body. Patients showed signs of relapse at about 1 year - approximately the amount of time it would take for the body to make more B-cells and re-grow antibodies. The researchers have found in the series of studies that giving multiple doses of rituximab over a long period of time helps to increase the number of people who respond and decrease relapse.

Is there a down side? Definitely. Killing off all your B-cells is not without risks, and there can be serious side effects, just as there are with immunotherapy in cancer treatments. Some people feel sicker during that initial period. I don't know about you, but I would be very willing to put up with worse symptoms for a few months if it meant a 67% chance of remission. Rituximab is currently a very expensive drug.

Also, although two-thirds of patients responding is an amazing number in any treatment study, that still leaves one-third that does not. You could potentially pay a lot of money and suffer through that initial worsening, with no benefit...though the odds are in our favor so far. Future studies will try to figure out what separates the responders from the non-responders and what factors can help to predict who will benefit from rituximab.

I'm also not sure whether rituximab could be used in ME/CFS patients who have active infections, like my son who has Lyme disease plus two other tick infections. I would think that killing off all B-cells and clearing the body of antibodies wouldn't be a great idea with active infections present, but I'm no expert.

When will rituximab be widely available? So far, Norway has conducted all of the ME/CFS rituximab studies to date. UK advocates at Invest in ME have raised $600,000 for their own rituximab study of 30-40 people.

Rituximab is already FDA approved in the U.S., for lymphoma patients and also RA. It is sometimes used in the U.S. off-label (i.e. for purposes other than its official approval) for other autoimmune conditions, like MS, lupus, and others. I have no idea whether any ME/CFS specialist are yet prescribing it for patients here or whether they are waiting for the results from the largest Norwegian study. As for the cost, if it is eventually FDA-approved specifically for ME/CFS, then it should be covered by most health insurance; used off-label, as it could be now, insurance coverage will vary based on the insurer and the specific policy.

So, those are the basic facts - and exciting facts they are! Besides the links above to the two early Norwegian studies, you can read:

• a brief summary from New Scientist
• a brief summary from the UK's ME Association
• a much more detailed, in-depth explanation written by the talented Cort Johnson at the Simarron Research site.

I plan to ask my ME/CFS doctor about rituximab on my next visit. I am interested to know whether she or any of her colleagues are using it yet here in the U.S. or whether there is any information yet to predict who will respond to it.

Do you know of any patients on rituximab or any doctors using it for ME/CFS yet?

What do you think of this exciting new possibility?

Excellent Article Accurately Describes ME/CFS and Groundbreaking Research

Every day, my e-mail inbox and Twitter account are filled with links to various articles, online postings, blog posts, etc. about ME/CFS. They typically fall into three categories: those in mainstream media that do a poor job of describing ME/CFS, those in medical journals that are very technical in nature, and those by and for ME/CFS insiders, like patients and advocates. After a while, it can all feel like the same old thing, over and over.

But today, I clicked a link to an article by Kris Newby in Stanford Medicine, Fall 2014, called Immune System Disruption: The Search for Answers and was truly impressed. Newby has done two remarkable things in her article. She accurately describes what life is like for someone with ME/CFS and what the state of research and lack of funding are for our often-ignored illness. And she also describes some ground-breaking research going on at Stanford that is absolutely stunning and gives me hope for a brighter future.

I'm not sure whether this publication is meant for other scientists and researchers or for the general public or both, but Newby did a great job of balancing the technical information and a picture of the real word for ME/CFS patients.

I know all about Dr. Jose Montoya's work at Stanford in treating ME/CFS with antivirals - he is, after all, one of the few great heroes in our limited world - but I was completely unaware of the the other amazing work going on at Stanford for ME/CFS. Montoya put together an incredible multidisciplinary team to look at all aspects of ME/CFS - genetics, infections, immune system, endocrine system, OI, etc. - and there is groundbreaking work being done there by Dr. Mark Davis, PhD, on the immune system that has the potential to change not just the ME/CFS world but many other illnesses as well. In addition, they have a state of the art laboratory, some very specialized equipment, and extensive private funding.

All in all, I was so impressed by this article that I immediately e-mailed the author to thank her. This kind of update gives me hope. Please click the link to read the full article and share it widely.

P.S. You can follow me on Twitter or "like" my blog's Facebook page to help stay up-to-date.

One Son Recovered?

Things have been crazy around here, with a visit to help my father-in-law sort through his house to get ready to move here and my dad having a 7-hour surgery yesterday as a first step to treating stage 3 melanoma. So, I am pretty exhausted and experiencing lots of stress.

But among all the bad stuff, we've had some good news, too. My 16-year old son has weaned himself off his Florinef (medication for Orthostatic Intolerance - OI) for the first time in 8 years, with no apparent ill effects! We tried the same thing last summer, but his symptoms flared up. So, after 8 years, he is now taking no Florinef, potassium, or salt tablets...and so far, he seems to be doing well. He's been very active - playing soccer, golf, biking, etc. in the summer heat, plus going to PT several times a week - and he's been feeling great.

His CFS has always been mild, and he fits the profile for those with the best chance of recovery (childhood onset, mild symptoms, up and down pattern, abrupt onset).

His symptoms began at age 6 (1st grade), at the same time as his older brother who was 10. Our younger son's symptoms were different, though, than mine or his brother's. His main symptoms were pain-related: chest pain, back pain, headaches, plus in his 6-year old words, "just feeling bad all over." He showed the classic post-exertional crashes and crashes when exposed to a virus but in between those bad periods, he felt fine. We talked privately to his pediatrician about our suspicions (by then his older brother and I were both diagnosed with CFS) but held off on officially diagnosing him - he was so little and still functioning well much of the time that we didn't want to saddle him with the label of being sick.

By spring of 3rd grade, he had missed over 35 days of school, and the principal called us to find out what was going on - at that point, his pediatrician ran all the necessary exclusion tests and officially diagnosed him with CFS. I had discussed his symptoms with Dr. David Bell (pediatric CFS expert, now retired) and Dr. Peter Rowe, pediatric CFS and OI expert at Johns Hopkins. They both thought that most of his symptoms were OI-related and would improve with treatment, so we started him on Florinef (our pediatrician worked with Dr. Rowe by phone, something he is still happy to do to help educate other doctors about CFS and OI in kids) which had helped out older son considerably.

The Florinef worked wonderfully - it cleared up all of his pain symptoms and greatly reduced the post-exertional crashes. On Florinef, he was symptom-free about 95% of the time and could do just about anything he wanted. He would still crash occasionally if he really overdid (we had an "only 1 sleepover in a row" rule!) and a cold might knock him out for a week or so, but otherwise, he has lived a fairly normal life from starting Florinef at the end of 3rd grade through the present.

He typically missed between 12 - 15 days of school each year for those occasional crashes but felt perfectly well the rest of the time. He's been playing soccer since he was 4 years old and has been on his school soccer team since starting high school, as well as a travel team this past year. He has had some injuries that sidelined him (he's hypermobile and prone to soft tissue injuries), but CFS/OI had little to no effect on his athletic life.

This past year, he missed only 3 days of school the entire year! That's a pretty amazing record for our household. And that included time out after a knee surgery. So, when he wanted to try going off Florinef again, we gave him the OK. He tapered off, as you're supposed to, and has now been completely off it for several weeks and is doing very well.

So, is he completely recovered? I don't think that's ever an easy question. He's definitely got Joint Hypermobility Syndrome, and he thinks he still has some mild OI symptoms. He says he sometimes gets dizzy if he stands up too fast or doesn't stay hydrated. But otherwise, he seems quite well. The real test will be starting school in the fall - going to school full-time and playing soccer two hours a day - but so far, so good!

That's your dose of hope for today - some people DO recover and it is possible.

How My Son Went From Couchbound to College

I guess that post title is a bit misleading because the honest truth is that we really don't know exactly what caused such a miraculous improvement in our son that allowed him to start college with his peers last August. Desperate for some way to help him and allow him to start college on time, after 18 months of near-total incapacitation, we tried dozens of new treatments that summer, so we aren't 100% sure which of them is really responsible for his dramatic improvement ... but we have some educated guesses.

A quick bit of background for those who are new to my blog: My son's history with both ME/CFS and Lyme disease is a long and complicated one. He first got Lyme in 3rd grade but seemed to recover fully from that and was very healthy in 4th grade. In 5th grade, he suddenly became severely ill and was diagnosed with ME/CFS (which I'd had for 2 years). He missed 60 days of school in 5th grade and only attended part-time in 6th grade, with home tutoring. Treatment with Florinef for Orthostatic Intolerance dramatically improved his condition at the end of 6th grade, and he went back to school full-time, re-joined the band, and was even able to play soccer again.

At the end of 7th grade, he got Lyme again. This time, he did not return to his normal baseline after treatment. He remained more fatigued, though treating with more doxycycline didn't seem to have any effect. Over the next 4 years, his condition worsened very gradually. He was still attending school but missed 25-35 days a year, with ever-worsening fatigue and cognitive dysfunction (and all the other typical ME/CFS symptoms). Finally, some strange symptoms alerted to the fact that he had another tick-borne infection, bartonella. A Lyme specialist diagnosed him with Lyme, bartonella, and babesia (all tick infections); our best guess is that he had these other infections all along but they were never tested for or treated back in 7th grade.

Treating tick infections that have been present for that long is a tricky business, and most people get worse (due to a herx reaction) before they get better. Our son got even worse than most after so long, with an 18-month long severe herx reaction that left him mostly incapacitated. He spent most of his junior and senior years of high school on our couch, struggling to catch up on missed work, but with the help of home tutoring (and many fierce battles with the school for accommodations), he managed to graduate on time. Although he'd had some gradual improvement, he still had a difficult summer (and only finished his high school work the day before college started!), but at the end of August, he improved dramatically.

Yeah, that was the brief version! So what changed last summer that allowed him to start college on time and even live on campus? Here are the things we tried and our best guesses as to their effectiveness:

Beta Blockers - We have no doubt that starting him on low-dose, extended-release beta blockers at the end of August played the greatest role in getting him back on his feet (quite literally). He felt an immediate improvement and is now able to walk all over campus without crashing the next day and has even joined the Ultimate Frisbee team. He still takes Florinef for OI (we tried reducing the dose and found he still needed it), but adding the beta blockers resulted in a significant improvement.

Increase Imunovir/inosine - He started inosine last spring (something I have had good success with, too), but it was last summer that I began very slowly increasing his dose. He now takes 4 pills a day - which is still lower than what is recommended - and I think inosine has helped to normalize his immune system somewhat so that he can better fight those infections. I've also noticed that virally-induced crashes have become quite rare for him (and for me) since inosine. Note that we started with prescription Imunovir (not available in the U.S.) and later switched to generic inosine, which worked the same for us (but is far cheaper), and that the dosing is quite complicated and must constantly change. It's all explained in that post on Imunovir/inosine.

New Supplements - This one is more of a guess, but we changed many of his supplements last summer, and I do think that has helped. We consulted with a biochemist/registered dietician who advised us on supplements based on his history, symptoms, genetics, and circumstances. I think that the most significant effect probably came from those supplements aimed at improving his methylation process (something I had started on my own before) to allow his body to better process both the medications he was taking for tick infections, as well as the toxins (i.e. dead bugs) released by the treatments. I think this is a very individual thing--choosing appropriate supplements based on symptoms and history--and we relied on the advice of the dietician/biochemist. In some cases, he was already taking certain supplements (like a multi-vitamin, alpha lipoic acid, and others), but the biochemist recommended a specific brand that she felt would be better absorbed and/or more effective. All of this has been very expensive, and we are not entirely sure which have helped and which are a waste of money. We've been afraid to change anything since he's been doing so well!

Eliminate/Reduce Artificial Dyes -  I really have no idea if or how much this helped. The dietician/biochemist said that artificial coloring can be toxic to many people, especially those with chronic illness. He was ingesting a lot of it because he drank 2-3 liters of Gatorade a day. The salt and fluids helped tremendously with his OI, but she was concerned that the artificial dyes were detrimental. We switched from Gatorade to Vitalyte, a more natural electrolyte drink with only natural colors (and not much of that). I have no idea if it helped or not, but the Vitalyte is actually less expensive than Gatorade anyway, and both of our boys like it. I think it has a lot less sugar in it, too. Later, when we realized that sugar was a big problem for him due to yeast overgrowth, we switched again to GU Brew tablets.

Trial of Gluten-Free/Dairy-Free Diet - Again, I have no idea if this helped or not. The dietician/biochemist suggested he try a restricted diet. She did not suspect food intolerances but said that people with ME/CFS just have trouble digesting gluten and casein (a protein in dairy), and that these substances can increase fatigue and other symptoms because they block one of the methylation pathways in the body. Our son was NOT happy about such a restricted diet, but he was a good sport and went along with it. I joined in for moral support, and he and I ate strictly gluten-free and dairy-free (I was already dairy-free) for 7 weeks. His improvements began several weeks after starting the restricted diet and he didn't notice any improvements in GI issues, so after 7 weeks, he added dairy back in first and then added gluten back a couple of weeks later. Interestingly, he did notice some GI issues worsen when he added dairy back, so on his own, he decided to limit low-fat dairy (it is probably a lactose intolerance since higher-fat dairy products like ice cream and full-fat cheese don't bother him much). That was 6 months ago, and he is still doing well, so I don't think the gluten and casein were a major issue for him...BUT it is possible that eliminating them for a while helped his body to recover and improved his ability to process toxins by temporarily removing that methylation block. Who knows? Note that we later both adopted a modified Paleo diet, which does help.

I think those were the major changes we made. Once he began to improve, there was a cascade of positive effects that built on each other. As a result of his improvement, he was finally able to gradually increase his dose of antibiotics to treat Lyme to a full dose (for a long time, he couldn't tolerate more than 1 pill every 3 days!), so we are finally seeing some progress in his Lyme/bartonella/babesia treatment. I think this is a critical point to understand: when underlying infections are present (Lyme, other tick infections or reactivated viruses like CMV, enteroviruses, EBV, HHV-6), as they are in many people with ME/CFS, you can't improve until you treat those infections, and the immune dysfunction makes it worse. It is a vicious cycle, and you have to address it all  - treat immune dysfunction and underlying infections.

The beta blockers allowed him to exercise again, and he gradually built his stamina up as a result--this is something I have seen, too. Being able to exercise without crashing allows you to build muscle and improve cardiovascular functioning, which in turn helps to improve your overall physical condition and well-being, allowing you to do even more. He slimmed WAY down as a result and lost the bloated look he'd had. He now walks all over campus every day, plays Ultimate Frisbee with his friends (he's not yet in good enough condition to play in their tournaments, but he practices with the team and is gradually building stamina), and is taking 3 classes each semester. He lives on campus in a single room and stays up late with his friends like any other college kid (though he can go to bed early when he needs to). To our astonishment, he missed only 3 days of classes fall semester and has so far missed only 1 day in the spring semester (the result of 6 straight hours of snowboarding!).

It all still feels like a miracle to us, and we are grateful every single day. I wanted to share with you not only the specifics of what we think helped but also the hope. I don't know whether he (or I) will ever be 100% well, but improvement is possible. He is so happy to be living among his friends, going to school, and resuming a somewhat normal-ish life.

How About Some Good News for A Change?

I don't know about you, but it's been another rough week around here.  Craig was home sick two days, and Jamie has been severely crashed all week and missed all five days of school.  I'm doing OK, but we're all feeling bad for Jamie.

So, when I heard some wonderful news yesterday, I wanted to share it with you.  One of our own has recovered!!

Many of you may remember Lori, the mom who blogged over at Living Chronically about her daughter's journey with ME/CFS and celiac disease.  Well, that journey is over now!  Jessica is well - completely and truly well - and is busy attending college and living the life of a happy, healthy young woman.  She has no symptoms, she can do anything she wants without crashing, and she no longer takes any medications at all. 

I talked to Lori about what helped and how she got to this point.  As is usually the case, it's impossible to tell and was probably a combination of things, including a measure of good luck.  Some of the treatments Jessica used that seemed to help with symptoms included:

• Treating sleep dysfunction and headaches with nortriptyline,
• Treating pain with Lyrica,
• Treating Orthostatic Intolerance with Florinef (Jessie was one of those kids who used to think it was normal to feel dizzy and black out all the time!),
• Lots of vitamins and supplements, based on bloodwork, including D3, B vitamins, multi-vitamin, fish oil, and CoQ10.

In addition - and perhaps most importantly - Jessica has celiac disease and is now on a gluten-free diet.  They suspected it for years and had tried gluten-free before, but she was officially tested and diagnosed in 2008 and stayed on a strict gluten-free diet after that.  Her symptoms didn't magically disappear as soon as she returned to gluten-free, but she has gradually improved over the years to where she is now.

They visited the Hunter-Hopkins Center in Charlotte, NC, and many of the treatments listed above came out of that.  Jessica was officially diagnosed with ME/CFS in 2005, so it's been a long and difficult process.  At one point, she had to quit attending school and finish high school online.

So, recovery IS possible and it DOES happen.  Dr. Bell's studies on kids and teens show that people who get ME/CFS as kids are more likely than those of us who got sick as adults to eventually recover, though I've posted stories here before of adults who have recovered as well.  I hope that hearing about Jessica's recovery inspires you and brings a smile to your face - not only in happiness for her but also in hope for all of us.

Two Inspiring Stories

After spending a long day driving back and forth to New Jersey with the kids to see our Lyme doctor, I am too exhausted to write much tonight.  I do think I my have figured out why I've been feeling so bad this week, but I'll have to tell you more about that tomorrow.

For now, I thought you might appreciate two wonderfully inspiring stories I just read about women with CFS:

• The first major news story, in USA Today, about Laura Hillenbrand's latest novel, Unbroken, with a lot of space devoted to her own battle with CFS.
• A news story from my own hometown, Rochester, NY, by and about a journalist who got severe CFS after mono as a teen and is now fully recovered. 

Hope you enjoyed this beautiful day (it was gorgeous here - sunny and warm with brightly colored fall leaves everywhere).

Recovery from CFS?

I volunteer to answer questions about CFS on AllExperts, and most of the time, I can handle the questions I get about symptoms, treatments, doctors, etc.  But I got one last week that really stumped me.  I want to share it with you for two reasons...one, to see whether any of you have answers for her, and two, to show all of you that recovery from CFS is possible and does occur.

Here is her question:

I was ill with CFS for 4 years, but for the last year or so
have had no symptoms, and have considered myself recovered.
However, in the last month I haven't been feeling as good -
nowhere near as bad as before, but I've been having
headaches and nausea, and my energy levels have been a lot
lower. I've seen my GP and they've ruled out other things
and have said it sounds like the CFS again. I recovered the
first time round by pacing really carefully and getting a
lot of rest, and once I was feeling much better introducing
some gentle exercise. I've started pacing again, and this
seems to be helping a bit, but not completely.
I've got 2 questions; first, is there anything else I should
be doing to avoid relapsing more? Second, if and when I feel
like I'm over this, how long should I carry on pacing myself
for? In the last 4 or 5 months I'd stopped resting/pacing
much, and this didn't seem to have any negative effect until
now. Once I'm recovered, how important is it to carry on
resting, and how much rest do I need to get?

 Quite a story, right?  I wasn't able to provide her with much information.  Dr. Bell told me a few things.  First, that a lot of people get CFS and recover within a year or so and are never diagnosed accurately in the first place, so we really don't know how many there are.  He's done some studies on recovery, but his study participants mostly got CFS as children, and children have a better chance of recovery than adults (I remind myself of that often!).  Other than his pediatric study, I don't think there's much data on recovery.  He also told me that the best chance of recovery is in the first 5 years of illness, so she fits in that category.  Also, there are higher recovery rates for those who had sudden onset and for those whose symptoms vary day-to-day.  Other than that, I don't know much about recovery.

Do any of you know more about recovery, relapse, and the questions she's asked?  Any insights or experience would be appreciated.

An Inspiring and Hopeful Story

I'm still lying low, trying to wait out this crash and using most of my mental energy on actually earning some money for a change (some things are finally starting to open up again in the freelance world).

So, I thought I'd let someone else write today's blog post.  I received an e-mail letter this weekend.  When I read it, tears came to my eyes.  I asked the writer if I could share it here.  I hope you'll find it as inspiring as I did.

"I'm a 23 year old medical student that came down with a severe case of 
mononucleosis in December 2009. My case was unusual and difficult to 
diagnose, so I spent hours (hundreds, literally) on the internet 
researching, and often came up with your blog. It was an extremely 
scary time, because the 8 different doctors I saw couldn't tell me 
when or if I'd get better.

I'm happy (thrilled, ecstatic) to report I'm almost healed.  Yesterday 
I ran 2 miles, swam 20 laps, and feel great today. I'm on my way to 
the rock gym to climb for the first time since November.  This morning 
I found myself sitting outside, just thanking every particle of the 
universe for being alive and having good health.

I wanted to tell you, and everyone else that you are networked with 
and communicate with...this has changed my life path.  I know now that 
I will graduate medical school and go on to specialize in diseases 
like yours.  I never, ever thought it would take an experience as 
difficult as this one to make me realize what kind of physician I am 
destined to be.  I will never forget the experience of 3 months into 
my illness, seeing this particular doctor...I spent over a week 
planning out my visit, making a little list of symptoms, and was 
so...excited, that maybe I might have found someone that could finally 
help me.  I got there, waited anxiously for her to come in, and when 
she did...she hardly listened to me. I was given a bunch of Ambien and 
sent out the door. I remember coming home and actually crying because 
I was so distraught in the idea that the healthcare system, in which I 
had placed so much of my heart and future, was such a complete and 
epic failure.

I don't know if I healed myself. I worked hard to improve my sleep, my 
mental health (I got a pet cat!), and I slowly and gradually worked 
into an exercise program (which was really painful at first). I 
swallowed more vitamins than I knew existed. I took olive leaf, 
valerian, and coconut oil. I can't say for sure that any of those 
things was the one that did it.   I know that most likely I just had a 
severe case of mono, that was likely to end with time anyway. I know 
this is nothing like CFS, and I don't pretend that my 6 month 
experience was anything like your 8 year one. But this feeling of 
being 'reborn'...I don't know how to describe it.  Every day I feel 
like I'm on borrowed time. I don't want to waste a second of it.

I promise, that as a future physician, you and everyone else that has 
CFS will experience something different from me.  I know now that 
there is a huge difference between 'curing' and 'healing'.  I'm 
committed to helping those who suffer from CFS, and other 
misunderstood chronic diseases as well, find the that path. I will be 
a healer.

I want to thank you, personally, for providing such insight just 
through your personal experiences."

Thank YOU, Jennifer, for reminding us that some people do recover and for giving us hope for the future of CFS healthcare.  You're going to be an amazing doctor!

P.S. I do think she had CFS.  Dr. Bell told me once that many people with virally-triggered CFS (especially post-mono/EBV) recover within the first year and are never even accurately diagnosed with CFS.  In fact, the length of time it usually takes for someone to get diagnosed with CFS (a year for me) probably skewers the recovery data and misses many of the milder cases that resolve themselves.