Health rising blog post, by Cort Johnson, Aug 12, 2016: Recovering from Chronic Fatigue Syndrome and Fibromyalgia – The Lerner Way

Recovery

Recoveries or near recoveries from chronic fatigue syndrome (ME/CFS) and/or fibromyalgia don’t happen often but they do occur.  For some, recovery stories bring hope and new ideas, but for others they bring up feelings of sadness or frustration.  They remind some of an outcome they don’t see as possible anymore, and are not an occasion for hope, but a reminder of all that has been lost.

Some people are able to find the key to their ME/CFS or FM. Dr. Lerner found it for some.
Chronic fatigue syndrome (ME’/CFS) and fibromyalgia are frustrating in their variability and uncertainty. I see them as being “big-tent” diseases that are so riddled with subsets as to make any discussion of personal recovery problematic. Until we know which subset we belong to, and the appropriate way to treat it, the recovery story situation and treatment in general is going to be confusing.

It’s possible and, perhaps likely that the treatment approach that returns you or I to health has not have been created yet. Or – perhaps more agonizingly  given the plethora of choices and most people’s limited resources – your treatment has been created and you just haven’t tried it yet. Unfortunately, there’s absolutely no way to determine which applies. Recovery is a puzzle we haven’t begin to put the pieces together in a coherent way yet.

It’s good to know in the meantime, though, that some people do recover and do recover fully – sometimes even after decades with these illnesses. If Dr. Lerner didn’t produce recoveries in most of his patients, the evidence suggests that many of his patients did improve significantly, and some did recover.

Dr. Martin Lerner

Dr. Martin Lerner was an infectious disease specialist who became disabled with ME/CFS in the 1970s.  Ten years later after he recovered, he devoted himself to ME/CFS and engaged in research and developed treatment protocols.

A couple of years ago I passed around a request to ME/CFS doctors to have patients who had recovered send their recovery stories to me.  Dr. Lerner was the only doctor who replied. Over the next month or so he provided my request to patients he was seeing. During that time  I received thirteen recovery/recovering stories from Dr. Lerner’s patients.

Antivirals have been an obvious treatment of interest given a viral trigger and findings of activated herpesviruses. It’s not clear how many ME/CFS/FM doctors embrace antivirals but it’s probably safe to say that few have done so with greater enthusiasm than the late Dr. Lerner.

Lerner believed that a smoldering or reactivated herpesvirus or other infections including Lyme disease were present in many people with ME/CFS. His aggressive, high dose antiviral protocols – sometimes lasting longer than a year – could be hard on the pocketbook but clearly could be very effective.

Not all of his patients did so well – his own research bore that out – but many, many people benefited.  In a 2010 interview he stated:

 I’ve got people who are up to 8 or 9 or 10% fully recovered, able to exercise and participate fully in life. I have all kinds of people who are not as well but are living normal lives now, marrying when they couldn’t marry before, working when they couldn’t work before. It’s been extraordinarily satisfying.

His antiviral protocols could be long and at $1,000 or more a month expensive. Lerner found that, in general, the longer one had been ill the higher their viral loads were. Given enough time, though, he felt that many long term patients could be treated successfully.

If somebody had been ill for three years or less they generally  responded to six months of starting antiviral therapy. Anyone with ME/CFS/FM, though, needed to be treated for at least a year before they could really assess how effective treatment is. A look at some of the Lerner recovery stories indicates that if Valtrex wasn’t working Lerner would sometimes add Valcyte to the mix.

Lerner also asserted that when his patients got well they generally stayed well. He  noted that he, himself, was on Valtrex for about six years and when he went off it he maintained his health.  He believed that about 30% of his patients got up to about 8/9 on a ten point functional scale, and stayed there.

Antivirals weren’t the only treatment Dr. Lerner advocated. He used beta blockers, blood volume enhancers and others and made it very clear to his patients that stress – known to be a potent activator of herpesviruses – was to be avoided and proper pacing was critical to give the protocol a chance to work. Exercise had to be extremely limited in the beginning. The body, Lerner felt, needed to reserve all its resources to fight off the infection.

Dr. Lerner’s Protocol

Some general aspects of his protocol are below. Check out Dr. Lerner’s Diagnostic and Treatment Protocols

1. Any new infection (such as the common cold or bronchitis, or sinusitis, or a urinary tract infection) will worsen the symptoms of CFS.  These common infections must be treated vigorously.
2. Exercise must be avoided, but living within the parameters of doing what you can do without ensuing exhaustion is encouraged.  In other words, activities that increase your heart rate must be avoided.
3. Alcohol may be a cardiac toxin.  I ask that CFS patients not drink alcohol.
4. Other conditions also may be chronic and may worsen or accompany CFS, for instance, chronic Lyme disease.  Other co-existing conditions must be found and treated (e.g. high blood pressure, diabetes mellitus).
5. Of course, we want CFS patients to be well; we want CFS patients to live normally.  We want CFS patients to be able to exercise, but I ask our patients not to exercise until her/his Energy Index Point Score® (EIPS®) improves to 8.  A CFS patient has an EIPS® of zero if bedridden.  An EIPS® of 5 allows a CFS patient to keep a sedentary job, but do little else.  A CFS patient with an EIPS® point score 7 does not need to nap during the day.

Doctor Lerner died last year and his practice is closed. The tenacity with which Dr. Lerner pursued pathogens – and the long antiviral treatment regimens he used – may have been unique. Did these long regimens improve success rate significantly? It would be good to hear how other patients did on his protocol.

Read the full article with the Martin Lerner Recovery Stories