Thursday, October 19, 2017

Throwback Thursday: Immune Dysfunction in ME/CFS

This is my third Throwback Thursday post where I pull together some of my older blog posts on a single topic related to ME/CFS and its treatment - the first was on Physical Therapy for ME/CFS and the second on Orthostatic Intolerance (OI), a condition that is an integral part of ME/CFS. Both posts have had a lot of visitors and discussion, so I am glad that some of these older blog posts are getting some attention and helping a whole new community of people!

Today, I slept poorly (unusual for me) and woke with a sore throat, flu-like aches, and feeling awful. All of these are signs that my dysfunctional immune system has been sent into overdrive. It can happen from overexertion, though treating OI mostly eliminated that. This time of year, these kind of immune symptoms are usually due to being exposed to some sort of virus or other infection - there are many of them going around!

So, I thought I'd devote today's Throwback Thursday post to the Immune Dysfunction in ME/CFS - what it is, how it affects us, and how to treat it and try to normalize the immune system, including what to do when you crash due to exposure to an infection, what we like to call a virally-triggered crash.

Immune Dysfunction in ME/CFS
Immune dysfunction is at the heart of ME/CFS. Based on decades of research, it is most likely the "engine" that keeps our illness going - an immune system that isn't working properly and doesn't recover normally after the initial triggering event (often some sort of triggering infection but sometimes extreme stress like an accident or other trauma). This blog post explains all about the typical Immune System Abnormalities in ME/CFS and how they affect us and our symptoms. It's critical to understand that in ME/CFS, the immune system is not entirely activated or entirely deficient - which is why typical treatments for autoimmune disease or immune deficiencies don't work for us - our immune systems are partly over-active and partly under-active. I've tried to explain this in simple terms because it is essential to understand the basics of how our immune systems are dysfunctional in order to try to improve or normalize them.

Treating Immune System Dysfunction in ME/CFS
Through the years, with the help of some wonderful doctors and my own research, we have tried several different approaches to treating immune system dysfunction - all have been successful and have helped to improve our overall condition and well-being. Each of those small improvements when put together adds up to significant improvement in our ability to function, be more active, and has improved our quality of life.

The first thing we tried for the immune system was low-dose naltrexone (LDN), which is a tiny dose of a medication that has been around for decades and is normally used in larger doses. LDN has been proven to work effectively against dozens of different kinds of immune disorders (no studies on ME/CFS yet, of course!) and is also helpful for ME/CFS patients. I felt better the very first day I took it. That blog post includes details on what it is, how it works, dosing recommendations (less is more), and our experiences. It is not expensive, but you do need a prescription for it.

One of our most successful immune system treatments has been inosine, sold as a supplement in the U.S. or under the brand name Imunovir as a prescription in Europe and Canada. This blog post explains all about inosine/Imunovir, our experiences with it, and the complicated dosing schedule that is necessary to keep it effective. For us, it has done a lot to normalize our immune systems and significantly reduce these virally-triggered crashes we used to succumb to most of the fall and winter. It's also something that is cheap and doesn't require a prescription, so it is in reach for just about all patients - just be sure to read that post carefully about how to use it and the dosing.

Our most recent immune system treatment has also been another very effective one: glutathione injections. It has been well-documented in many research studies that people with ME/CFS have low glutathione levels (a compound in the body vital to energy production and detox) and our bodies don't make more efficiently. Any kind of glutathione supplementation will help to improve ME/CFS, but we have found injections to provide the most significant improvement. Before starting them, my son and I both got bacterial bronchitis about 3-5 times a year (why is explained in my post on immune dysfunction), and each time it would knock us out for weeks or months. I have done my injections twice-weekly as indicated and haven't had bronchitis since I started them - over a year now! My son has not been as diligent about the injections and continues to get bronchitis (he's seen the light now and is trying to remember them each week!). That glutathione blog post includes information on both supplements and injections to boost glutathione.

Treating Underlying Infections
Another common outcome of our immune dysfunction is Yeast Overgrowth. This is both due to the specific type of immune dysfunction common in ME/CFS and the fact that many of us need frequent antibiotics (due to recurrent bacterial infections). Yeast overgrowth is often a silent and stealthy factor in our illness - many people (myself included) don't realize it is an issue until they start to treat it and see how much better they feel. Keeping yeast overgrowth under control (that blog post lists many different approaches) helps my son and I both to feel less fatigued, less achy, and have significantly improved mental clarity (i.e. less brain fog).

Two very important aspects of immune dysfunction in ME/CFS are that old viral infections can become reactivated, and we are especially prone to bacterial infections. So, one of the treatment approaches that often yields the most dramatic improvements is to treat underlying infections. For many with ME/CFS, that means reactivated viruses that remain dormant in healthy people - things like Epstein-Barr virus that causes mono or another herpes-family virus called HHV-6 or various types of enteroviruses (that cause stomach symptoms in healthy people but can linger and remain activated in ME/CFS). This is a treatment pathway that often requires going to see one of the few ME/CFS experts, but is well worth the trouble because it can lead to significant improvement and sometimes even recovery. This blog post summarizes my own improvement after taking antivirals (in combination with LDN) - my virus levels were fairly low (but positive) so my gains were correspondingly small-ish but still important, most critically, an increase in activity level and in mental clarity.

The other kind of infections that ME/CFS patients should look for and treat are the various types of tick infections (Lyme disease is one of those). Even the CDC has now acknowledged these are far more widespread than previously thought (their early numbers were off by a factor of 10 and their revised numbers are probably still too low, due to difficulties in diagnosing), and countries and U.S. states that previously proclaimed they had no Lyme disease are now scrambling to address the "new" epidemic. Our immune dysfunction puts us at even greater risk than everyone else. Blood tests are not very helpful in diagnosing Lyme and other tick infections - the very best tests for Lyme only detect it about 60% of the time and doctors rarely test for any other tick infections. So, if you have had a negative test for Lyme before, that tells you nothing, since it is so prone to false negatives (you can believe a positive result). We learned all of this the hard way. Our son got sicker and sicker over the course of 3+ years while we chalked it up to "just" ME/CFS. We finally took him to a Lyme specialist (the only way to find out for sure) and found that he had 3 different tick infections! With treatment, he has gone from mostly bedridden to attending college, working part-time, and living on his own. So, this blog post explains all the details of Why Everyone with ME/CFS or FM Should Be Evaluated for Tick Infections and how to go about that.

Last but not least, the position I find myself in today, a common one in fall and winter for those with ME/CFS: a sudden crash for no apparent reason. That often means we have been exposed to a virus or other infection that has caused our immune systems to go even crazier than usual, causing increased symptoms. This blog post explains how we prevent and treat virally-triggered crashes.

I think that covers my most important blog posts on the immune system. Since immune dysfunction is at the heart of ME/CFS, treating immune dysfunction (and the underlying infections that result) can often result in the most dramatic and significant improvements. That's been the case for my son and I. We used to spend most of the fall and winter crashed on the couch, and now we are mostly functional, except for a mild, occasional crash (like today, which should only last a day or two from recent experience).

Have you tried any of these immune system treatments?
What have your experiences been?
One that I haven't tried yet is IVIG, so please leave a comment below if you have tried that. I'm curious to hear from those who have used it.


Lisa Ehrman said...

Lots of great information! My don't have your conditions, but also have a screwed-up immune system. Thanks

Sue Jackson said...

Sorry to hear you are suffering, too, Lisa! The immune system treatments mentioned here - LDN, inosine, and glutathione - all help ANY kind of immune dysfunction. They are all immune modulators that help to normalize your immune system, whether your dysfunction is upregulated (like autoimmune) or immune deficient, like HIV, or a mixed bag, like ME/CFS.

Lori Plyler said...

Hi Sue! Hope you and the family are doing well. So glad I stumbled onto this post this morning.

As you're aware, Jessie has been doing really well - recovered, we love to say. However, it does seem that her immune system isn't completely normal and I wonder if it ever will be. She just began working 12-13+ hour shifts as a pediatric ICU nurse at the children's hospital here in Atlanta and after one or more of those shifts she needs at least a day to recover. She tends to get a sore throat and swears she's got a bug but we worry it's just immune crap. Anyway, I'm going to take some of the advice from this post and pass it on, so THANK YOU!

Take care! XOXO

Sue Jackson said...

Hi, Lori!! So nice to hear from you and to hear that Jessie is stil doing pretty well & living a normal life - wow, nursing is seriously high-exertion! I'm impressed :)

But I agree with you - what you're describing does sound like immune dysfunction - the sore throat after excessive exertion is the key. I would definitely encourage her to try some immune modulators - tell her it will help her fight off all the "bugs" she's exposed to at the hospital (which is true) - she might try inosine which doesn't require a prescription - though the dosing is complicated. She would also definitely benefit from herbal antivirals, like I describe in the link on Virally-Triggered Crashes - those will help whether she thinks she has immune dysfunction or not. My husband is perfectly healthy, and he takes loads of olive leaf anytime he;s exposed to a virus!

Great to hear from you - glad Jessie is well and hope you are, too!


Anonymous said...

Hi Sue!
I am so glad I found your blog! Everything I have read so far makes so much sense! My name is Sally and I am 30.
I have lived with chronic fatigue for around 14 years, after I had a bad dose of Glandular Fever caused by EBV. I was acutely ill for a few weeks, lost lots of weight, and was off of school for ages. I was never the same.

A year or so after this I was still struggling with fatigue and was told I had post viral fatigue. Around about the same time I was also diagnosed with generalised anxiety and put on Effexor. I am still on this.

For all of my 20's I have struggled with moderate fatigue and various other symptoms like brain fog and migraines. I have good weeks and bad weeks. Some weeks I can work, come home and stay up until a normal hour but on bad weeks I have days off from work, or go home from work and straight to bed. Most weekends I spend 'catching up' on sleep by sleeping all day and all night. I can get up from sleeping all night, put on some washing and fall asleep on the couch again for a few hours.

On average I probably get more colds than most people. I have been seeing my doctor for years on and off looking for answers and not getting very far.

In the middle of last year (winter in Australia) I became quite ill with cold sweats, sever migraines, stomach pain and nausea, no appetite and dizziness. I went to the doctor who did some bloods and it came back with very high liver function readings. More tests and it revealed that I had co-infection with EBV and CMV which had caused hepatitis of my liver. The lab tech and my doctor said it was very unusual to see someone co-infected and for it to affect my liver as much as it did.

Despite this, my doctor didn't seem phased and told me to rest. I am certain that this is all linked to my fatigue. It is worth noted I also had chicken pox twice as a child (hospitalised with secondary infection on one occasion). So... I have a atheory that I had immune dysfunction that means I cannot keep herpes viruses at bay and this causes my CFS. I recently had bloods done again, 9 months after my acute illness and I am still showing 'weak positive' for current CMV infection.

Everything you have said above rings so true. I want to find a doctor who will look into this further for me. It is too much of a coincidence.

Interested in hearing your thoughts.

Kind regards

Sue Jackson said...

Hi, Sally -

Thanks for your note & for sharing your experiences - I'm gad you found your way here! So many things come to mind in reading your story...

"Post-viral fatigue" is just another name for ME/CFS (often doctors who don't like or don't believe in ME/CFS, use post-viral syndrome instead).

The immune dysfunction of ME/CFS causes old/dormant viruses to re-activate. So, what is happening with you with EBV and CMV is not unusual at all - for someone with ME/CFS. This is, in fact, at the root of our illness, and as you noticed, the herpes family of viruses are common culprits for reactivation - my own son got shingles (caused by the chicken pox virus) a few years ago.

This IS treatable, and I would urge you to find a doctor who understands that - and isn't afraid of the ME/CFS diagnosis because this is 100% normal for us. What you need are antivirals, as described in this post. Those reactivated viruses need to be treated aggressively with antivirals - that will help you to improve tremendously and may even cause a partial or full recovery, since you also had an EBV trigger that started all this (though that was a long time ago so complete recovery is less common). Valtrex and Famvir are both excellent antivirals that work against all herpes family viruses and are pretty mild, with few side effects. Valcyte is another one that is stronger and more toxic but works for some people.

Try this to find a doctor -

The Australian ME/CFS Good Doctors List

The two top doctors/clinics there that I have heard of:
Dr. Christabelle Yeoh – Central Coast of NSW
Doctors at CFS Discovery Clinic - Melbourne

If you can get to someone who really understands ME/CFS & get on antivirals, you have the potential for some real improvement (though you are likely to get worse first on antivirals - that means they are working - come back & talk to me when you get to that point!)

Good luck - let me know how it goes!


P.S. Do you feel the Effexor helps? It is an antidepressant that might have some positive effects with ME/CFS. However, your "anxiety" is very likely due to OI, which causes symptoms that feel exactly like anxiety - treating OI can also bring dramatic improvements (and any expert should know about it) - here's more info:

Unknown said...

Hi Sue,

Thank you for taking the time to read my post.

Everything you have said makes so much sense. It is such a shame we have to doctor shop just to find someone who is on top of this stuff!

Unfortunately I live in Perth which is a smaller capital city and on the more isolated side of Aus. We do have a good CFS/Lyme doctor here but he is very expensive and his waiting times are very long. I think it may be worth it though. I am not sure about his stance on anti-virals but he prescribes LDN.

I don't believe the Effexor helps at all, in fact I do wonder if it contributes to my fatigue, as I started taking it roughly the same time I had glandular fever and developed the fatigue. It certainly helped my anxiety and panic disorder but my gp should have encouraged me to come off of them years ago in my opinion. I want to try to come off of them but the withdrawals are horrible, even when you taper so i am very hesitant.

Sue Jackson said...

Hi, Sally -

When you mentioned Perth, I checked with a friend in Australia who I thought had lived there (her daughter has ME/CFS). Here's what she suggested re: local doctors - "Am in Perth now. We see Dr Edmund Lee for OI but he’s not ME/CFS otherwise. Still, it’s a start. We also see a naturopath Eloise Charleson whom I trust. Also I’ve heard of a functional medicine practice that I’d probably try - Churchill Health in Shenton Park. If I hear anything else I’ll let you know."

Hope that helps! Good luck!


Unknown said...

Wow, thanks so much for chasing that up for me Sue! :)

Anonymous said...

Hi Sally, thanks for taking the time to write this - it is really insightful.
I too have been suffering with some form of ME / CFS for almost a year but I am struggling to get a diagnosis. My GP is trying to be pragmatic and is giving me medication like LDN as he said that even if I do mitochondrial tests/ MRI it won't prove anything because the tests are not causative - this makes me feel somewhat hopeless; in any case I am not insured for these test doesn't give an indication for treatment. What do you think? He also suggested like you do glutathione pills and phosphatidycholine pills - both of which are weird to me as they are found naturally in food. He also suggested an antioxidant supplement called Granalix, which I take. I do have EBV but didn't think too much of it, since the doctors didn't. Also, I read what you wrote about OI - I don't feel a difference when I sit and stand - is this something you would feel?
Sending love to everyone in this community - it is tough

Sue Jackson said...

Hi, Leo - You addressed your comment to Sally, a commenter on this post, so I hope you don't mind me replying to it (I am the author of this post & blog) - I'm not sure if Sally is still signed up to see what is posted here.

You and your doctor are right - there are NO tests that prove ME/CFS. It is diagnosed clinically (i.e. based on symptoms) and by ruling out other possibilities. The biggest clue is an intolerance to exertion or exercise, where you feel very sick & all your symptoms worsen (i.e. a crash) anywhere from 1 hr to 24 hours after even mild exertion. So, once you know you have ME/CFS, there is no need for further testing. My doctor has the same philosophy as yours, and I think it makes a lot of sense - before running a test, she always asks, "what will we do with the results?" If there is no treatment that will result from testing, then it is probably a waste of money.

Glutathione is absolutely essential for us, but don't waste money on the pills - they are very poorly absorbed and it won't get into the cells where it is needed. Glutathione may not be something you can get from food, but it IS something that a normal, healthy body produces on its own that we with ME/CFS don't produce enough of. That's why it's important for us to supplement. And glutathione is critical to SO many important processes in the body - immune function, energy production, detox - that it really is essential. Click the link in this blog post to the blog post on glutathione - it explains why we need it and the best ways to get it (injections, IV, or nasal spray are most effective).

As for OI, if you have ME/CFS, then you almost certainly DO have some form of OI. It's not always obvious for us. I was certain that my son and I didn't have it because we'd never felt dizzy or fainted...and I was so wrong! Consider how you feel when you have to stand - in line (queue) or for some other reason. Can you stand as long as the healthy people around you? Do you feel worse after a period of standing? Do you find yourself fidgeting a lot if you have to stand? Go ahead and read this post on OI:

Over 97% of people with ME/CFS have it, and treating OI can be absolutely life-changing! It's what got my sons back to school full-time when they were younger and what now allows my older son and I to live fairly normal, active lives - he is at a 4-day outdoor concert with friends this weekend!

As for LDN, the dosage can be tricky because everyone is different - use a little trial and error to find out which dose helps you feel better without any side effects - there's a link here to a post with more information on LDN, too.

Good luck! Sounds like you are in good hands with a doctor who actually understands ME/CFS, so that is HUGE (and rare). Do you mind telling me who your doctor is? You can send me a private message rather than posting here if you prefer (click on View My Complete Profile way up above for an e-mail link). I've been compiling a list of doctors who know how to treat ME/CFS around the world, and I don't have anyone listed yet in Israel or any part of that region at all.

Thanks and good luck!


Unknown said...

hello sue thank you for all information. my child is 10 years old suffer of cfs. can you reccomende to me which glutathione to buy him? we live in israel. thank you

Sue Jackson said...

There are lots of different options to try to increase glutathione, as I describe in this post. I wrote a separate, detailed post all about glutathione. It's linked in this post, but here it is again:

Try some of the suggestions there & let me know how it goes.

And are you in our Parents' group on Facebook? It's an outstanding group of parents of kids with ME/CFS from around the world - very compassionate and supportive but also with lots of great information, too. If you haven't joined yet, here's the link - just be sure to answer the questions that pop up after you click on Join - that's how the admins know if you fit the group:


Unknown said...

thank you Sue I am in the great group. I will read the link you add here. again thank you very much for reply me:)

Sue Jackson said...

Glad to hear it! Good luck with increasing glutathione - it made a HUGE difference for us!