Friday, August 28, 2015

Effective Treatments for ME/CFS

This post is long, long overdue. I have been writing this blog for almost 10 years and have often written about treatments for ME/CFS - new research, things we've tried, things that worked for us, and things that didn't. But you'd have to go searching through 9 years of blog posts to find everything relevant (or at least the 88 posts I've tagged under "treatments")!

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. I can't count how many times people have told me they were diagnosed with CFS and then the doctor said, "There are no treatments - just go home and deal with it as best you can." 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.

So, here, all in one place, is a list of treatments that have helped my sons and I - a set of guidelines for potential treatments to discuss with your doctor and try for yourself. A couple of important notes first:
  1. Everyone is different and different things work for different people - the best approach is to try things and find out for yourself.
  2. That being said, don't just try something and give up if it doesn't work at first - with ME/CFS, all treatments require some trial and error to find exactly what will work for you - it may takes many months and many trials to find just the right combination that will be effective for you. So many times, I hear someone say, "Oh, I tried that - it didn't work for me." Then, I find out they tried just one medication or supplement at just one dose - try, try again!
  3. In the case of medications and supplements, always start with the lowest possible dose - and then cut it in half! Then, you can gradually work up depending on how it affects you. People with ME/CFS tend to over-react to meds and supplements.
  4. Patience and persistence are the keys to success! Don't Give Up!
  5. If nothing seems to work for you, then there are usually underlying infections that need to be diagnosed and treated, and you may not improve at all until you address those (see Diagnose and Treat Underlying infections below).
  6. I am not a doctor! These are just the treatments that have worked for us  - 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? Check these databases to find a doctor near you or call local doctors and ask if they treat ME/CFS. You don't necessarily need an expert - just someone willing to learn more and work with you.
With those guidelines in mind, 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. 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!

Correct Sleep Dysfunction
When I first found my primary care doctor and she diagnosed me with ME/CFS (after a year of living with a mystery illness), she said, "The first thing to do is to fix your sleep - that will improve ALL of your symptoms." She was right - with the characteristic sleep dysfunction of ME/CFS, you don't get the deep stages of sleep that you need to recharge your body and keep it running well. Without good sleep, everything gradually gets worse in an ever-increasing downward spiral. In contrast, when you get solid, refreshing sleep, everything is better and you stop that steady decline. I'm not talking about sedatives to knock you out but medications that actually correct the underlying cause of our sleep dysfunction. My son and I have had deep, natural, refreshing sleep almost every night for the past 11 years. Read more about how this works and the details of our own experiences in this post on Correcting Sleep Dysfunction.

Treat Orthostatic Intolerance
Studies show that over 97% of those with ME/CFS have some form of Orthostatic Intolerance (OI), as do about 75% of those with fibromyalgia. Other terms under the OI umbrella include POTS (Postural Orthopedic Tachycardia Syndrome), Orthostatic Hypotension, and Neurally Mediated Hypotension (NMH). OI is such an integral part of ME/CFS that it was included in the new diagnostic criteria created earlier this year by IOM. Basically, OI means that our bodies can't hold a steady blood pressure and/or heart rate when we are upright, especially when we stand but also just sitting up. OI contributes to all of the symptoms of ME/CFS: fatigue, headaches, achiness, pain, sleep dysfunction, exertion intolerance and more. The good news is that treating OI often results in dramatic improvement in all symptoms! This post explains what OI is, how it affects us, and some treatment options, including my sons' experiences with Florinef, a treatment that allowed them both to return to school full-time. This post is specifically about using beta blockers to treat OI, a treatment that has dramatically improved life for my older son and I, allowing us both to be much more active without crashing. As I said in the introduction, trial and error is critical here - there are over three dozen different types of beta blockers on the market, available in a wide range of doses - it often takes trying several at different doses (always starting with the lowest possible) to find the one that is best for you. Beta blockers have been particularly helpful to me in conjunction with using a heart rate monitor.

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. The problem is that there aren't a lot of known ways to do this yet. ME/CFS is a mixed bag of immune dysfunction: parts of our immune systems are over-active and other parts are under-active. So the treatments typically used for autoimmune disease or for immune deficiencies don't usually work for us. We need to avoid both immune boosters and immune suppressors; instead we need to normalize or balance the immune system. Two simple and very inexpensive treatments have worked well for my son and I: low-dose naltrexone and Imunovir (generic name, inosine, sold as a supplement). Together, these two treatments (again, super cheap!) have dramatically improved our symptoms and quality of life. We have very few crashes anymore, and virally-induced crashes have almost disappeared completely. I almost never get sore throats or flu-like aches anymore, unless an infection is present.

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. It is known that ME/CFS causes old, dormant viruses to reactivate, so it is very, very common for people with ME/CFS to have active viruses in our bloodstreams. One example is the Epstein-Barr Virus (EBV), the virus that causes mono (also known as glandular fever). By adulthood, over 95% of the population have been exposed to EBV, whether they had an active case of mono or not - it is a very common infectious agent. In most people, it is dormant and causes no symptoms, but since our immune system over-reacts to viruses, it is often reactivated in us, causing all sorts of problems, including sore throats, swollen glands, flu-like aches, and severe fatigue. There are many other viruses that can trigger ME/CFS to start or get reactivated by the immune dysfunction. The good news is that antivirals can help tremendously, sometimes even bringing on full recovery! The tricky part is that antivirals are very specific to the virus (unlike antibiotics), so the first step is getting tested for all sorts of common viruses (some to look for include EBV, HHV-6, CMV, and common types of enteroviruses) and then the doctor can choose the antivirals that work against your specific virus(es). Here's a summary of my own experience with antivirals - in my case, I had only low levels of EBV and HHV-6, so my improvement was correspondingly small. Typically, the higher the viral levels, the greater potential for improvement. If you know which infection triggered your ME/CFS to start (for instance, mono), then treating THAT infection can be particularly effective and even bring on full recovery - time is of the essence - the sooner, the better!

Another category of infectious agents that you should be evaluated for are tick infections. Lyme disease is a known trigger for ME/CFS, and I have met hundreds of people diagnosed with ME/CFS who turned out to have tick infections behind the scene, including my own son! He got steadily worse for 5 years before we finally found out that he had Lyme disease plus two other tick infections. He has been improving with treatment for those and is currently in college, working at his first part-time job, and enjoying a very active social life! If you have been tested for Lyme in the past and had a negative result, that means nothing. The tests only catch about 50-60% of Lyme cases and are very prone to false negatives. The only way to know for sure if you have tick infections is to be fully evaluated by a Lyme expert. 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.

Finally, my son and I have both struggled with yeast "infections" or overgrowth, and I am always amazed by just how much worse it makes us feel! Because of the particular type of immune dysfunction in ME/CFS, yeast overgrowth/candida/thrush is very, very common and can go undetected for years, while you gradually get worse and worse. This post explains how to diagnose yeast overgrowth and treatments that have helped us. Untreated, I feel exhausted and achy and can barely get off the couch (even with all these other treatments that have helped me); when the yeast overgrowth is treated and under control, I live a full, active life. The difference shocks me every time!

Treat Methylation
This is an area of treatment that we just learned about last year, but it has definitely helped us both. Methylation is almost always dysfunctional in people with ME/CFS and directly affects GI function, energy production, and mitochondrial function. This blog post explains what methylation is, with links to how to treat it.

Well, that was longer than I intended but provides a good roadmap to treating ME/CFS with currently available approaches. It can also help you to find the most critical blog posts I have written on treatment options, instead of wading through 9 years' of posts!

This just represents our own experiences - please share your own treatment successes in the comments section! What has worked for you?


Sue said...

Great list.

I've been having crazy central nervous system disregulation in the past few years. Anxiety, panic attacks followed by shutdowns, severe depression as a result. A constantly buzzing body is hard to live in.

I began taking Lamictal (lamotrigine) six weeks ago and its been dramatic. It helps dampen down a crazy CNS by reducing excess glutamate release. It's been a literal lifesaver for me. I have pyroluria but didn't realise that excess glutamate can be a problem for us till now (so hard to keep up with all the bits and pieces us CFSers need to be up with, isn't it).

Sue Jackson said...

I hadn't heard of that before, Sue, so thanks for the information! So glad it has helped you!

Yes, the complexities of this illness make it very hard to keep up with everything.

By the way, you should get a full evaluation by a Lyme specialist for all of the tick infections - many of them (including Lyme) cause neurological problems and even permanent neurological damage if left untreated. It would be worthwhile to get evaluated just in case.

Thanks again for sharing the information about glutamate release - I was hoping this post would encourage others to share their treatment successes - there is always more to learn!

The Median_of Infinity said...

I write about my healing from CFS/Adrenal fatigue in my blog, of the issues that you listed above can be healed by correcting the autonomic nervous system dysfunction that causes CFS/FIBRO/ADRENL FATIGUE...when autonomic nervous system dysfunction is corrected, your body naturally heals itself...including sleep dysfunction, orthostatic intolerance and underlying infection...these things naturally will heal if you address the root cause...I am passionate about this theory and treatment for CFS and the broader implications for treating chronic illness

Anonymous said...

I am unable to read this because of the spotted backgroud. I would like to be able to.

Unknown said...

Sue, I am learning a great deal from reading your posts. Nice work!

Anonymous said...

A full workup to assess hypermobility would be in order as neurological symptoms can also be caused by joint instability resulting from joint hypermobility syndrome/EDS (which also frequently overlaps with ME).

Anonymous said...

Hi sue, thanks for taking the time to put together such a comprehensive post! I am wondering if you feel that adrenals play a role in any of this, I noticed that in this post you do not mention cortef?

Sue Jackson said...

Absolutely - adrenal insufficiency is a subset of a larger problem in ME/CFS - endocrine dysfunction (our endocrine system doesn't release the right amounts of hormones at the right times, contributing to sleep dysfunction, fatigue, OI, and other symptoms). Since the obvious, treatable aspects of the endocrine system are normal for me (like thyroid), my approach has always been to focus on treating the bigger, underlying causes - like immune dysfunction, underlying infections, etc. Treating those and improving overall results in improvements in the endocrine system (including adrenals), too.

The research on using Cortef has been controversial - some swear by it; other experts say that introducing artificial cortisol makes your body stop producing its own.

Have you tried it? What have been your experiences? We haven't tried it ourselves.


Anonymous said...

I totally agree. All of these things have been addressed and are in the process of being corrected by using the Gupta Amygdala Brain Retraining Program. For me, this is what is working on each one of the symptoms listed. Some of us are too sensitive to take Western medicine. In fact, my body is so sensitive, I can't handle most holistic remedies either. So my approach needed to be completely non medicinal. At first I saw it as a curse, now it's a blessing. I never have to worry about being hooked on a drug and I am much more in tune with my body than I have ever been because I don't take anything that muddles my awareness.

Unknown said...

Ancora grazie Sue, dopo la pagina fb ora ho letto qualche pagina del tuo blog, un regalo preziosissimo!!!

Sue Jackson said...

You're welcome, Stefania! I only understand a few rods of Italian, but "grazie" is one of them! And I used Google Translate for the rest :)

You're very welcome - I hope this information helps.



Kristi said...

Hi Sue,

Love your site. Could you tell me if you took the LDN and Immunovir at the same time or seperately? And also what dose for each? I have yet to find a doctor who specializes in ME/CFS but my GP is willing to experiment with me to help with my symptoms.

Sue Jackson said...

Hi, Kristi -

Thanks for the kind words about my blog & taking the time to leave a comment! I;m glad you found me :)

Yes, we started LDN and inosine (we now take the generic version of Imunovir) at roughly the same time, within a few months of each other - that's not a problem since they work synergistically, both helping to normalize the immune system. BUT, you probably want to space out starting each of them so you can clearly see its effects, any improvements, and any side effects. It always takes some trial and error with ME/CFS to find just the right dose of anything, so you want to be able to clearly see the cause-and-effect of each new treatment on its own.

For dosing and much more information, just click on the links in this post - this post is a summary of all the things that have helped us, and each highlighted treatment is a link that takes you to a specific blog post with detailed information. So, like on the LDN link to get more info on LDN, etc. After reading those more detailed posts, let me know if you have any questions. Dosing can be tricky with both (especially the inosine), so read those posts carefully, and always start with a low dose.

Good luck!


Karina Kanepe said...

Would like to add - re lamotrigine (Lamictal). As everyone with ME/CFS knows, what works for some, won't work for others. I was prescribed Lamictal (off label) in 2011 for ME/CFS with negative life changing consequences after taking one half dose. I guess my message is - proceed with caution. Though, whilst saying this, I acknowledge I could not have envisaged the massive deterioration I experienced after taking a one half 25 mg. Lamictal tablet.

Sue Jackson said...

Karina -

So sorry to hear about your awful experience! I've never heard of lamotrigine, so I had to look it up. Says it is used to treat seizures and bipolar disorder, so I'm not sure why your doctor chose it for ME/CFS.

Thanks for the warning!! Have you recovered back to your original baseline or were the effects permanent (so far)?

Thanks so much for taking the time to share your experience.