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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.

the key to ME/CFS and FM

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

After Dr. Lerner recovered from ME/CFS he dedicated the rest of his life to treating and understanding it

Dr. Martin Lerner was an infectious disease specialist who he became disabled with ME/CFS in the 1970’s.  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.

The Martin Lerner Recovery Stories

The Mostly Complete Recoveries

exercise-musclesThe Athlete

Throughout my treatment, there were two occasions where I neglected to take the proper medication.  In both occasions, I suffered almost immediate setbacks.

Deanna was a physically fit mother who loved high intensity aerobics and lifting weights. She got so sick that she had to crawl up the stairs at night to get to her bed. Once she got into bed she pretty much stayed there – sleeping 12-15 hours at a time. She was diagnosed with an HHV-6 infection.  Being careful not to overdo she began to see some relief within a couple of months.

Twice when she neglected to take her treatments she relapsed immediately.  After a year she felt almost normal and was working full-time and exercising regularly.

The Post-Pregnancy Fibromyalgia Patient #1

I honestly thought I would never be the woman I use to be, and the mother I always knew I could be. Thanks to Dr. Lerner I am now my old self, and the best mother I could have ever imagined.

Jaclyn’s second pregnancy did her in sending her into excruciating pain that began in her legs and spread to the rest of her body. She was in wheelchair and sleeping up to 20 hours a day when she saw Dr. Lerner.  Finding high levels of EBV reactivation, Dr. Lerner put her on double dose of antivirals; three pills of Valtrex (500 mgs) four times daily (Mylan brand) and two pills of Valcyte (450 mgs) in the morning, plus lots of water.

This young woman (24)  ended up with a very severe but ultimately temporary case of ME/CFS. Within three years of getting ill she had recovered completely.

The 25 Year Patient

DON’T give up finding a doctor who will listen and work with you. When I was 35 yr. old, I felt like I was 60.  Now that I am in my 60’s, I feel like I am in my 30’s.  I lost 25 years of my life to this illness

In 1987 Kate, a high school teacher who exercises regularly, becomes ill. Over time she experiences a wide range of symptoms (fever, chills, muscle and joint pain and fatigue, extreme sweating, tremor, memory problems, poor sleep, hair loss, swollen glands,  increase urinary frequency, dizziness,  night sweats, etc.)

Dr. Lerner diagnoses an HHV-6 infection and prescribes Valcyte (1350 mg/daily). She is to do no exercise. Proving that a long duration illness does not mean complete recover is impossible, Kate rebounds strongly. Describing herself as a 9/10, Kate now exercises regularly, works and is active socially.

The Stress Onset Patient

My recommendation to anyone out there struggling with CFS is to first, be kind and patient with yourself.  Celebrate every step forward without focusing on what isn’t done or what doesn’t feel good.

With her marriage falling apart, a new job on tap and a young daughter to look after Heather comes down the flu that does not go away. She experiences tremendous fatigue, gastrointestinal, cognitive and other issues. Doctors are no help until five years later/

Dr. Lerner prescribes Valtrex. It takes some time but within two years, she is exercising and dating again is back to almost 100%.

The Engineer

Listen to your body.  When you are tired….rest. Plan ahead and reduce stress by yoga or other relaxation techniques.

Leah, a civil engineer for the Department of Defense had been completely healthy until at the age of 32 she became ill after a series of sinus and bladder infections. She suffered from vertigo so severe that she couldn’t get out of bed without passing out.  She went from 115 to 85 lbs. and was hospitalized several times.

Using valtrex under Dr. Lerner’s care she recovers completely is well for seven years and then relapses. Going back on Dr. Lerner’s regimen she appears to have mostly recovered completely again; is able to work full time, is able to ski, golf and socialize but is careful not to overdo.

The Incomplete Recoveries

The Professor

Dr. Lerner, MD, is an extraordinarily highly qualified Infectious Disease doctor.  Many (of his patients) have experienced the results that I have.

Fred went from being a daily jogger to just barely being able to make it to work in a month.  Eight years later, citing the effects of his ME/CFS, he retired from his University professor.  Despite visiting medical centers across the U.S. he continued to decline. Fifteen years after first getting sick he was home bound and believed death was near.

After six months on Valcyte, however, he was back to 75% of normal health. While he was unable to exercise he was able to participate in most of his normal activities.

The Post-Pregnancy Fibromyalgia Patient II

Melissa’s pregnancy and her subsequent post-partum depression and fatigue appears to have pushed her into fibromyalgia.  Dr. Lerner’s functional questionnaire, six years later, indicated she was a 3 on a 1-10 scale.  She is unable to do housework. Testing reveals she has rheumatic fever with active cytomegalovirus and Epstein-Barr virus infections, and an enlarged thyroid.

Her probiotic and antiviral regimen takes her from a 3 on a functional scale to a 7.75.

The Worker

 I’m not 100%, yet, but I’ve found a new normal, and I’m enormously grateful for the support of my incredible family and the amazing work of Dr. Lerner.

Amy is working 60 hours a week and training for a half marathon when her fatigue and flu-like symptoms begin.  Within a year she;s unable to work and becomes first mostly homebound and then bed bound. Her therapist accuses her of not wanting to get well.

Dr. Lerner diagnoses her with an HHV-6 infection. Her progress on Valcyte is slow and she doesn’t help herself by doing too much activity too soon and relapsing. Within six months, though, she is more out of bed more than she is in it.

Two years later she is still on Valcyte. While she can’t do the exercise routines she could before, she is active all day, working part time and volunteering and does yoga for exercise.  She has a new normal and a high quality life. She says she’s enormously grateful for the support of my incredible family and the amazing work of Dr. Lerner.

The Go-Getter

I am tuned in to my body’s limitations now, and honor myself when I detect the beginning of fatigue. ….Dr. Lerner’s work has made it possible for me to live a relatively normal life. Anyone who doesn’t already know about my CFS would never guess I have any limitations.

Renee was a real go-getter, mother, professional and active walker when she gradually got ill. Prior to becoming ill “boundless energy” was her norm. Within three months she’s experiencing severe enough fatigue and nausea which  disrupts every aspect of her life. She’s no longer able to engage in even moderate exercise.

Lerner diagnoses EBV and CMV, prescribes Valtrex, within a few weeks cognitive problems dissipate, after 9 months begins Valcyte, by 2010 she is at 8/10 on an energy scale, doing most of her normal activities, but despite Lerner’s warnings overdoes it with exercise and relapses. Back on her meds she gets back to 7/10.

The Smolderer

I’ve learned I still need to be very careful about my activity level, job stress and make sure I get enough sleep (good sleep is precious)

Alan had a smoldering case of ME/CFS for 20-25 years. During that time he was able remain active and ski, play tennis, etc. but paid for it. At the age of 53 he experienced sudden and last fatigue. By age 58 was chronically exhausted.

After being on Valcyte and then Valtrex for two years, Alan is back to 60%. He is able to work full days but has to be careful to keep his heart rate and stress levels low and be sure that he gets good nights sleep.

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