Monday, September 15, 2014

Treating Immune Dysfunction in ME/CFS

I wanted to share what happened the past few days because it is a great example of how much better I am doing now than I was 5 or 10 years ago, thanks to treating immune dysfunction which is at the heart of ME/CFS.

My college son called last week saying he had bronchitis. It's a common occurrence for him and for me, probably because the characteristic immune dysfunction in ME/CFS generally makes us more susceptible to bacterial infections. By now, he knows the signs and understands how important it is to nip it in the bud, so as soon as he felt that tightness in his chest and began to cough, he saw our doctor and got on antibiotics. He comes home every Sunday so I can refill all his medicine boxes (and for Sunday dinner!), so we'd all been together a few days earlier.

Soon after his phone call, my younger son said he felt like he was getting a cold - scratchy throat, runny nose, etc. These two things taken together - in a house where 3 people have ME/CFS-type immune dysfunction - usually means we have been exposed to a virus, as is typical at the start of a new school year. Like most people with ME/CFS, we rarely catch colds or other viruses, but being exposed to one triggers a crash (which is sometimes hard to tell apart from a virus!). I have always referred to these kinds of crashes as virally-induced or virally-triggered.

In our experience, virally-triggered crashes are the worst kind. In the past, being exposed to a virus like that could knock my older son and I out for weeks or even months in the fall and winter especially (and my younger son, whose ME/CFS was milder, might be down for a week or so).

So, on Saturday morning, when I woke still feeling exhausted with a sore throat and feeling achy all over, I thought I was in for a long, difficult week at least. I had to help my father-in-law with some more moving-in tasks Saturday morning, but by noon I was headed back home to bed. My husband and I had to cancel our rare night out alone in favor of take-out and TV. I woke Sunday morning still feeling awful, with classic crash symptoms.

But then something amazing happened. I took my nap early on Sunday because we were expecting six people for dinner, and I still had to refill our 12 medicine boxes (all of which I was dreading). But I woke up from my nap feeling a lot better. In fact, I managed the medicines and dinner just fine and still felt OK at bedtime. I woke up this morning feeling like I usually do - well-rested and good, with no obvious CFS symptoms!

What was responsible for this almost-miraculous shift from month-long virally-triggered crashes to just 36 hours? I believe it's inosine and other treatments that target the immune dysfunction.

ME/CFS is, at its heart, an immune system disorder, as I explained in that previous post. The characteristics of that immune dysfunction have been well-defined in research studies, with a Th1-Th2 imbalance (Th2 dominance) predominant and low Natural Killer Cell function (it's explained in that post). In the case of ME/CFS, immune boosters or immune suppressants are equally ineffective for us - we need immune modulators or normalizers. Over the years, we have tried several treatments to try to normalize our immune systems, and some have been quite effective.

One of the first things to do is to find and treat underlying infections. The immune dysfunction causes reactivation of dormant viruses and susceptibility to bacterial infections. Most people with ME/CFS will test positive for some viruses that are common but normally dormant in the general population - anti-virals can help with those. Many people also have Lyme disease and/or other common tick infections (a negative test is meaningless, since there are no accurate tests for any of these infections yet), especially if joint pain or severe brain fog are part of their symptoms.

Once you've treated underlying infections - or at the same time - there are various treatments to try to normalize the immune system. Two that we've found very effective are low-dose naltrexone, which gave me an immediate boost in energy and mental clarity, and Imunovir or inosine (similar compounds).

I think the inosine in particular has had positive long-term effects (we started with Imunovir, a prescription medication, but when it became unavailable temporarily, we switched to inosine, the generic equivalent sold in the US as a supplement and found it just as effective and much cheaper). This week's experience is a great example. Since starting inosine, virally-triggered crashes have become rare and only last a few days instead of weeks or months. Winter used to be torturous for me, with one virus after another being brought into the house (with two school-age kids), and my son and I often crashed for much of the season. No more! I also generally have more good days and fewer bad days, and my stamina is much improved (beta blockers also helped with that). Immune-type symptoms (sore throat, swollen glands, feeling feverish, flu-like aches) have become rare.

So, with these improvements, any kind of crash has become rare for me, and a long-lasting one almost never happens now. My allergies have improved, too (another sign of the immune system being more normal). My son has seen all these same improvements, and I think inosine is a big part of why he is able to be at college now, living on campus. These treatments are what are helping us to lead more normal lives, even though we both still have ME/CFS.


hkd said...

Hi Sue..thank you again for such great information!! Always so helpful…also on a personal question/favor…i know you are signed in on my blog - did you get Dec 19 2013 or Aug 30 2014 email alerts…had a bunch of people say that they haven't gotten them nor in spam folder…not that i would know how to remedy this..any advice or if you could check if you got it please email me if you have time…thanks - heather

woman on the verge said...

love the good news, sue. i severely crashed in spring & became one of dr lerner's patients in summer. with high viral loads. valtrex knocked down ebv, but hhv6 & cmv continued to climb. & then my sleep fractured again.. so he is recommending vistide.

Sue Jackson said...

Good luck! I hope it works for you. Dr. Lerner is the expert on treating viruses in ME/CFS and I know someone who completely recovered on Vistide.

You might also consider one of the immune modulators I mentioned here during your antiviral treatment - it could help your own immune system to help with the viruses.

Good luck!


Anonymous said...

its really tragic how people are pursuing highly speculative treatments to the exclusion of supporting research.
the momentum has slowed down considerably and we will all pay an enormous price when the research momentum slows down further-then there will really be no hope. at this stage, the top priority should be propping up the flagging research infrastructure, but patients insist on immediate gratification. what a sad state of affairs
jeremy bearman
cape town

Sue Jackson said...

Actually, Jeremy, none of these treatments are speculative at all. There are decades of research data clearly defining the immune dysfunction in ME/CFS, the and treatments mentioned here - treating underlying infections and improving immune function with LDN and/or inosine are all well-known and well-respected treatments in the ME/CFS world. For us, all of these were recommended and guided by top ME/CFS doctors. LDN has been used for many years with great success in all sorts of immune disorders - in fact, it will soon be produced commercially in low-dose form specifically for this purpose. And inosine/Imunovir has been used safely and effectively for immune disorders for decades.

There is no reason for ME/CFS patients to lie in bed and suffer when there are so many effective treatments available TODAY that might help to improve their quality of life.

This doesn't mean we give up on further research - far from it! ME/CFS research has been increasing and improving over the past 10 years, and it will continue to do so, given its current momentum.

We can use currently available treatments today to feel better and improve our lives, while we also continue to support research toward newer, better treatments.


kate b said...

Sue, Do you pulse with the inosine the same as you did with the immunovir?
Thank you from the bottom of my heart for your blog, kate brunton

Sue Jackson said...

Yes, absolutely, Katie. My earlier post on Imunovir/inosine explains the dosing schedule we use. Any kind of immune modulator has to be pulsed or it stops working effectively - I guess our systems get used to it.


kate b said...

Thanks +++++

Anonymous said...

I just found your blog Monday. My 16 year old has CFS, and I believe he is in the middle of what you are terming a viral crash (last 2 weeks). I ordered the inosine, and it just arrived. When you say you take 4 pills a day or 2 pills a day, do you take them all at once or do you space them out over the entire day? Thanks, Susan

Sue Jackson said...

Hi, Susan -

I'm sorry to hear about your son, but I think I can help. I'll answer your question first. I space the pills out and don't take any after 3 pm because it's too stimulating for me. On 4 pill days, my son takes 2 at a time, breakfast and lunch. But everyone is different, so it may take some trial and error to find the right dosing (the experts recommend 6 a day some weeks but I could never tolerate that much). The importnt thing is to constantly vary the dose and take time off on weekends and a whole week or 2 every few months. It helps it to stay effective.

I started a group on Facebook for parents whose kids have ME/CFS:

It's a very warm and supportive group, with lots of great information on treatments, doctors, and school help, as well as emotional support.

I also started a teen group:

I'll look for your first name among people requesting membership to the parents' group. If your son wants to join the teen group, send me a quick message to let me know his name (jacksonde at


Brian said...
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Brian said...
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Unknown said...

Sue: Thank you for the information about Inosine. Can I order it on-line? Who is Dr Lerner? Your blog has given me some hope.Thank you.

Sue Jackson said...

Hi, Johanna -

So glad you found this post helpful...and hopeful!! Treating immune dysfunction is just one of many possible areas to treat in ME/CFS - there are actually LOTS of effective treatments available. Unfortunately, most doctors don't know about them, so it is up to the patients to educate them! Here is another blog post that summarizes EVERYTHING that has helped my son and I, with links to more info on each treatment:

As for ordering inosine - and using it - you should read the more detailed post specifically on inosine that I linked to in this one:

You can buy it anywhere that supplements are sold - we buy ours through Amazon (that post includes an Amazon link at the bottom to take you right to our favorite brand). Dosing is very complicated, so be sure to read that post carefully before you start it.

Dr. Martin Lerner was a wonderful doctor - one of the ME/CFS experts in the US. He focused specifically on treating underlying infections and did a lot of the pioneering research on using antivirals in ME/CFS. Unfortunately, he passed away last year, but his work made a huge impact, and you can still read about his studies on his website:

Good luck with the inosine - please let me know how it goes for you or if you have any questions!


Anonymous said...

Hi Sue, I'm so glad to have found your article.
I'm going to begin with Inosine ASAP.

I would like to ask you a question.

Do you think that people like us, with reactivated chronic viruses, can infect other people? My previous partners were healthy and energetic but used to get tired exactly like me during the relationship. Some doctors laughed at me when I reported this. But now I can say it's not a coincidence.

I'd be glad to know your thoughts on this.
Kind regards


Sue Jackson said...

Hi, Pinky -

Thanks for stopping by and taking the time to leave a comment!

There is no scientific evidence that ME/CFS or reactivated viruses are contagious, and our own experience bears that out. My husband has lived with me the whole 19 years since I first got sick (and for many years, with two sons who also had ME/CFS). I always have reactivated viruses, and there's been no sign of that affecting my husband at all. In addition, most of the viruses that typically get reactivated (EBV, HHV-6, CMV, etc) are infections that 95% of adults already have in their systems - they just stay dormant when you have a normal immune system. However, all that said, there have been plenty of cases - and evidence - that non-blood-related people in the same household with someone with ME/CFS are more likely to also get ME/CFS. Again, there's no evidence of contagion but rather, household members are exposed to the same infectious agents. This study provides data:

Good luck with the inosine! Let me know how it goes or if you have any questions - the constantly changing dosing is a little complicated by very important to follow.