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.
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 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.
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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
- 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.
- 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.
- Alcohol may be a cardiac toxin. I ask that CFS patients not drink alcohol.
- 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).
- 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
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.
- Deanna Gets Better the Lerner Way: A Valcyte ME/CFS Success Story – From Health Rising’s Recovery Story section
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.
- Antiviral Regimen Returns Wheelchair Bound ME/CFS and Fibromyalgia Patient to Health – From HR’s Recovery Story section
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.
- A Decades Long Struggle with Chronic Fatigue Syndrome (ME/CFS) Ends – From HR”s Recovery Stories section
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 Flu That Never Ends Finally Does for Heather – from HR’s Recovery Stories section
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.
- From hospitalization to recovery: Leah’s Dr. Lerner ME/CFS Recovery Story – from HR’s recovery stories section
The Incomplete Recoveries
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.
- Fearing Death Was at Hand, Fred Finds an Answer – from HR’s Recovery Stories section
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.
- A Fibromyalgia Patient Finds Help with Antivirals – From HR’s Recovery Story section
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.
- Amy’s Story – from Athletic Go-Getter to Homebound – and Back Up Again – from HR’s Recovery Stories section
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.
- Renee Can’t Exercise But Otherwise Has A Normal Life – from HR’s Recovery Story section
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.
- Valcyte and Valtrex Return Alan to Work – from HR’s Recovery Story section
- More on Dr. Lerner – Check out interviews, blogs, video’s as well as Dr. Lerner’s diagnostic and treatment protocols on Dr. Lerner’s Resource page on Health Rising
- ME/CFS and FM Recovery Stories – Check out all 55 recovery stories on Health Rising . (Click on Recovery Stories to display the categories.)
- Recovered or Recovering? Pass the good word along and tell us how you did it . (Must register for the Forums).
Cort, I am also one of Dr. Lerner’s success stories. I was a 2 on his energy scale index in January 2014. I have had CFS/ME since 1995 or earlier, possibly since 1963 when IBS began, Dr. Lerner diagnosed an HHV-6 infection. Today, I am a consistent 8 with some days a 9. If I could remove the pain of a neck injury from 1968, I could be a 9-10.
Though I chose not to return to my previous stressful work, my family responsibilities have increased. I babysit my 1 year old grand daughter 4-6 days a month, care for 88 years old father, who had a heart attack and stroke last year, help my oldest daughter who has Chronic Lyme/CFS, and work part-time. I could never have done this before the treatment.
I do spend 2-3 down days fairly regularly after I have had to push several days in a row.
After twice monthly hospital infusions of valcyclovir antiviral 9 times, Dr. Lerner then follow with Valcyte 450mg/2 tablets twice a day. I continued Valcyte through May 2015, when I had started going backwards.
In January 2015, Valcyte had become available as a generic which did not work for me. Dr. Lerner was the best staying on my insurance company to cover the original Valcyte as well as getting coverage for Valtrex 500mg/3 tablets 4 times a day. he added in July 2015 (Valcyte was dropped to once a day).
I am fortunately still on his protocol. We were able to have my local GP study Dr. Lerner’s protocol and step in the moment Dr. Lerner passed in Sept. 2015, continuing his protocol even today.
Thanks for passing that on Marilynne and congratulations for finding something that really helped. That’s great that your insurance company covers your Valcyte treatment. Getting insurance companies to cover things is an art that ME/CFS experts learn over time.
I saw Dr. Lerner in Michigan for about a year. He put me on Doxycycline and Valcyte – said I would notice a difference in 6-12 months. I never did so I eventually went off of the medicine due to the fact he was about a 6 hour drive from me, my kidneys had begun aching, I couldn’t sleep due to the medication and now was on a cocktail of sleeping pills and relaxers. I was also concerned because of his age and the fact even if this worked he could go at any time and I wouldn’t be able to access any of these medicines from any other doctor of mine. He passed away a few months later, sadly.
I had IV acyclovir 1g then next day 600g IV three times .
I had significant improvement in my MECFS symptoms that lasted 5-7 months and gradually reverted back .
Blood tests showed infection and elevated white blood cells , neutrophils and monocytes . All reverted back after treatment
Not sure how to get it prescribed again
Thank you for your comments on Dr. Lerner’s protocols. I’m glad you are doing so well. I’m a patient of Dr. Chia’s. In addition of ME/CFS I have chronic shingles/HHV-3/herpes zoster, very atypical, disseminated, for which I’ve been on the acute dose of Acyclovir, 800 mg 5x/day, for almost seven years.
I also take Cimetidine, 200 mg 2-3 x/day, depending on my shingles status. Cimetidine both helps tip the immune system in the right direction (back toward Th1; these viruses indicate TH2 dominance) and helps the acyclovir stay in the body longer. Evidently it’s processed fairly quickly. This protocol helps but I still have occasional break-through flare ups, most problematic when they’re in my eyes or ear.
Well, when you wrote about generic Valcyte not working for you, it helped me to connect the dots: my pharmacy started carrying a different manufacturer for generic Acyclovir. The very frightening shingles nose dive I’ve been in for a few weeks started within days of beginning the “new” version.
After reading your post, talking through this with a wonderful pharmacist, I learned that my HMO surprisingly covers the brand-name version, Zovirax, for not a lot more than the generic. It took them a few days to get it in, so I just started it this morning but feel a positive surge in my system. Maybe I’ll also then get a Herx, but I’ll take it if it means this stuff is finally working.
Thank you for your comments! Without them, I may not have figured out the faulty med. I’d continue to be heading toward deaf, blind, and in a lot of pain all through my limbs and torso where my shingles come back.
Thanks for your note. One quesitons, does Dr. Chia follow Dr. Lerner’s protocol? I need a good Infectious Disease doctor who does. Please reply, thanks.
First, thank you so much again for our post that talked about generics not working as well as brand-name anti-vitals for you. One week now after getting on to the brand name Acyclovir, and this very frightening shingles flare is subsiding. I was even able to have two outings–my max during a stable week, though Monday’s has set me back a bit. Still, it was nice to get out of the house. I really fear that without your comment helping me to shift perspective, the only way out of my house would have been in an ambulance.
To answer your question about Chia: He doesn’t have one specific protocol. He tests individuals for their viral load, and pays special attention to the enteroviruses, his area of expertise. (Chia enterovirus, Montoya EBV, Peterson HHV-6; they each have their emphasis.) Through blood tests he’s found reactivated EBV/HHV-4, zoster/shingles/HHV-3, HHV-6, Chlamydophila pneumonia, an echo virus, and in the highest titers, the enterovirus Coxsackie B5. He has also biopsied stomach and sinus tissues, working with my GI and ENT doctors when I had an endoscopy and sinus surgery, finding enterovirus in my tissue RNA in both places. So it’s not just in my blood, it’s part of me, replicating with my cells. I can see now that, like people with Hep C, until there are targeted antivirus drugs invented, I will carry this load.
Many of Chia’s enterovirus patients do well with supplements he’s developed, heavy on the Oxymatrine which he credits with curing his son. You can find info on that at his Enterovirus Foundation website. But Oxymatrine made my zoster/HHV-3/shingles worse; his son had Coxsackie B4 and is a couple of decades younger than I am, and I don’t know what other viral load he carried. Perhaps we get sicker if we have A, B, Z when people with A, B, and C do better. I am very interested in what the big data studies from Ron Davis and the NIH might elucidate about that.
Would Chia follow Dr. Lerner’s protocols? Perhaps, since it helped you so much. When I see him we discuss the protocols of other doctors that I’ve read about, and he is often glad to have me try something that seems related to my presentation; other times he knows why I should not. In twelve years, he has really come to know me and I trust him.
Like Lerner, Chia is not afraid to put people on high doses of pharmaceuticals. He is in close touch with the Norwegians doing the Rituximab studies and thinks that I will be a good candidate for that treatment when it becomes available or is in clinical trials in the US. I am fortunate the Chia’s practice is just a few miles from my home, and most grateful that he continues to see patients rather than just do research. He does have people that fly in from all over the world. While people from outside of the S. Cal. area may have to pay out-of-pocket for some things, he feels a responsibility to stay in traditional practice rather than becoming a boutique so that he can treat people like me on an HMO. I am most grateful for him. My hope is that his work and that of others will figure this stuff out so that when he retires–don’t know when that will be but he’s in his 60s–I will be able to count on other doctors to come to know our illness and be able to treat it. Good luck.
Hi Carollyn, Thank you so much for your lengthy explanation regarding CFS doctors. Very helpful! I tried to go see Dr. Chia or Montoya in 2009, immune system crashed, couldn’t travel. Now on IVIG, Valtrex, doing better but it waxes and wanes. I feel I need an ID doctor since my immunologist has no clue about CFS/ME or EBV. I had to convince him to put me on Valtrex. I will probably try to see him long-distance, hope he still offers that. What treatments are you doing now for EBV and HHV-6 or other conditions? I hope you feel better soon!! Wishing you the best of health!
HI Nancy–If you have someone who can already prescribe the Valtrex, that’s great. I at least maybe keeps you in a holding pattern, not getting worse, even if you are not returned to full health. My treatment for the three HHV’s (3,4, and 6) is Zovirax, 800 mg 5x/day, and Cimetidine 200 mg 2-3x/day depending on my shingles status. I also take anti-viral supplements L-Lysine, zinc, and beta-glucans, Proboost (thymic protein A) to boost my T-cells, and Immunocal, the glutathione-boosting whey protein nutraceutical. I take many other things as well, but these are the ones most related to viruses.
Isn’t it funny how this illness is; reading that you get IVIG my thought was “ooh, she’s so lucky!” Chia has sent me to a local immunologist/allergist, Dean Chiang, because my immunoglobulins are low–but apparently not low enough for IVIG to be covered by insurance. Chia and Chiang would both be happy to write an Rx for me for IVIG, but out of pocket it’s $10,000/month. We try again with insurance every year. So my IGG Subset 3 has been low for years, and IGG-1 varies by a couple of points just over and just under the normal line. How I can have an overall IGG number that then isn’t low enough for IVIG is unfathomable when IGG-1 makes up 60% of the total number. If my numbers keep marching lower, in time I’ll be a candidate.
I hold out hope that the big data studies will find some combo of IGG and other abnormalities well treated by IVIG so that insurance will have to let us give it a try.
About the waxing and waning, it is a way of life for more–and I really mean that, a way to have a life! Activity will cause everything to flare up, but thirteen years in I really need social outings, an occasional big day (with lots of preemptive rest and planning) at a museum or a concert, and travel at least once a year to see my family in a distant state. I know I will have a long crash following, but what is life without family? Without recharging your soul with the things you love, in my case art and public gardens and outdoor music?
Thanks for the list of items you are taking. Did Dr. Chia prescribe all of those? Sounds like a good plan. I totally relate to you in terms of needing IVIG, I had to go to so many doctors. I even went to the Orange County Immune Institute in Fountain Valley from MN, they told me I had a problem in 2007. (They are closed now). One MN immunologist in 2009 finally took a chance on me because I was told my numbers weren’t low enough by Mayo. Now after 6 years on IVIG and Valtrex, my T cells, lymphocytes, & Total IgG basically normal. Still have low IgG3 subclass. I am much better, not 100%. Just dx with MCAS taking H1 & H2 blockers, and lots of supplements for genetic defects.
I agree we all need to fill our soul, I do veggie gardening, go to plays, concerts, and see flowers gardens when I can.
Can I ask why you were prescribed Cimetidine? I just started that based on reading. Thank you so much for sharing, I so appreciate it.
Hi–Chia prescribeed Cimetidine because of two of its actions: it keeps Acyclovir in the system longer and tips the immune system more toward Th1 because I am so Th2 dominant.
I’ve separately found that Cimetidine helps with allergies (it’s an H2 blocker) and interstitial cystitis–both quite welcome results.
Chia suggested the Proboost. He approves of all of my other supplements but I found those with my own research and the help of my acupuncturist. Interestingly, she had me on a Sephora root, the source of Oxymatrine, for a few years before Chia prescribed it. Her Traditional Chinese Medicine version was in a complex tab with other things, so a lower dose. That may have actually been better for me for when I took the very high dose version Chia suggests, it made me worse. (My Traditional Chinese Medicine doctor is Western, and my Western doctors are Chinese!)
I’m glad that you are doing so relatively well. I hope that all of us can find those helpful doctors, and days out doing things we love.
Thanks again Carollynn!! Best in health and healing.
Hi Carollynn, Thanks for the additional informaton. I have never had a doctor talk to me about Th1 and Th2 balance. I don’t have much confidence in the people I see since they are not CFS/ME literate.
I love doing these things but do them occasionally, wish could do them more. On the couch a lot. Take care.
have been “surviving” this and now additional and worse symptoms for 30 years….i see no solution as no doctor will help with antibiotics…been surviving with spending loads of $$$ on supplements…it’s ruined my career, etc etc
Just one last thing from my visit with Chia last week. I’ve been concerned about being on such high doses of Acyclovir for so long–even years! He said that HIV patients in the early years of HIV/AIDS were on those for a long time because of concomitant herpes viruses, but when treatments came for the underlying HIV, they were able to get off of Acyclovir and/or only take it for short periods for flare ups. I believe that that will happen for us too, once the underlying immune condition is addressed with real knowledge and real treatments. Meanwhile, I drink A LOT of water every day to keep my kidneys flushed, and have my kidneys monitored a couple of times a year.
Are you in Michigan? Who do you see? I am Desperate.
Since Dr. Lerner was having success I’m surprised not more of the top doctors follow his protocol. At one point I was on Valcyte and Famvir at the same time but wish I had been tried on Valcyte and Valtrex. After three years of Valcyte it was determined that it was too long a period to be on it. I’m still mostly housebound and some days bed ridden.
Janet – I have been on Valtrex since 2004. I started on 3 a day, after 11 years I was able to go to 2 a day. I am still on 2 a day. I went from a 1 to an 7-8 on his scale. He wasn’t treating me, I just saw the research and found a doctor willing to try. If I drop to a lower dose I get headache, swollen glands, sore throat etc. EBV flare. If I do too much I also get a flare. But a 7-8 is so much better than I was before I can live with that and be happy.
Dr. Montoya at the Stanford CFS clinic has continued his work. I am on the protocol through them.
P.S I initially improved quite a bit on the first two years of Valcyte but the improvements stopped after that. I’m hoping to have a chance to try it again! 🙂 HHV6 and EBV
Are there any other doctors following the Lerner Protocol.
There are other doctors who use antivirals but I don’t know if anyone does what he did. It was an expensive and long protocol and if it didn’t work – and I imagine for a good number of people it didn’t – that was a lot of money down the drain. Plus valcyte can have strong side effects.
The best option, really, would be for a better antiviral to come along actually.
I knew the late Dr Bruce Duncan for years, unfortunately he had stopped practicing by the time I was diagnosed with FM.
He treated FM and CFS and other chronic conditions with vaccines.
Why does it have to be expensive drugs to treat viral problems, when vaccines are available to target specific viruses? And they do work. The original idea of vaccines was not to pre-immunise the population, useful as that is, it was to cure people with the illness. The medical profession moved away from that, but it might be exactly the right thing for chronic conditions that resist other treatments.
Philip, I’ve read the book of dr Duncan. If only someone would treat patients like he did I would jump in a plane and go there. In my opinion Dr Duncan and Dr Jay Goldstein are the only doctors who
were succesfull in treating a large number of patients – without
strong side-effects, be it in two very different ways; neuropharmalogical versus immunological.But since FM/ME is a neuro-immunological disease that could still make sense.
The concept of getting a shot of a little bit of virus to engage the boy’s immune system makes sense on paper, but it may be that experience showed that giving vaccines to treat one specific viruses could wake up other latent viruses, and that’s why they are no longer used. Dr. Chia has talked much about the things medicine learned through treating HIV and AIDS. I knew a woman whose HIV was doing okay for a few years until she had a seasonal flu shot, and then developed full-blown AIDS and passed away a year later. There may have been others with HIV who did fine with that shot; as in all illnesses, individual responses vary. In my case, after being disabled by ME/CFS for about six years, in 2009 I had the H1N1 shot and the seasonal flu shot, fearful that year of what H1N1 might do to my already weak health. I needed to travel, though, to distant state to see my mother before she died, and it was flu season, so I had both shots. It was soon after that I developed shingles which in no time became chronic, perhaps the most difficult aspect of my ME/CFS ever since. Before that double-dose, I did well with seasonal flu shots. Dr. Chia has advised that I no longer get them, but to encourage everyone close to me to be sure to. For a shingles vaccine, one has to be shingles-free for two years to get one. If you have not had shingles, perhaps it’s wise to think through getting vaccinated.
Hi Phillip, good point, however some ME/CFS patients have relapses after having a vaccine (that may depend on vaccine type though) The Hep B vaccine and the common flu vaccine are problematic to name a couple.
I for 20 years had the flu shot while sick with CFS with no real problems. My level of activity was good at 7/10 to 8/10. Last year however my ME/CFS worsened, I thought it was due to my diet and the winter months (I live in the southern hemisphere so we have the vaccine around April, May ).
This year I had the flu shot again, I was slightly wary that last years flu shot may have had influenced my health but I was pretty sure it was just a coincidence. But to be safe I requested the lower dose infant dose flu shot. Basically it’s a half adult dose taken 4 weeks apart. The next day I had the typical achy body I expected… But I have been bedridden since May. It’s 6 months later and I’m still bed ridden. I ache all over and feel constantly ill. Fatigue is serious, but the malaise is the worst it’s ever been. I decided to check the date I had last year’s vaccine and it was just days before I got weakened to a 4/10.
I got back to a 6/10 but this year’s shot has me at around 1/10. (It feels permanent too)
I’ve heard of the risks of vaccines but I stupidly never believed it was a problem for me. So to anyone reading this please NEVER EVER have the flu shot. And I would be extremely wary of any vaccine for a ME/CFS patient. That’s my anecdotal advice though. People with ME/CFS should talk to a specialist about different vaccines and the possible side effects. The antiviral ones Philip mentions maybe ok. Does anyone know?
Sorry to hear that Woodyrob but thanks for passing it on.
I saw Dr. Lerner in 2007-2008 for CFS. He treated me for Babesiosis and also diagnosed me with HHV-6, which most adults have to some degree. I declined his recommendation for Valcyte because of its serious risks and because by then the viral theory of CFS had already been largely discredited.
Dr. Lerner’s results simply are not reproducible. This explains why his protocol has not been adopted by other physicians and will likely never be.
Dr. Lerner also had strange ideas about how CFS affects the heart, which was not found in my case. With two year treatment plans, Lerner’s recovery stories may likely have occurred on their own or with an expensive, side-effect producing placebo.
He demonstrated to me the inherent dangers in doctors “discovering” a cure for their own disease. He was not objective. Let’s leave scientific research to the real scientists.
It’s too bad that Dr. Lerner’s treatments were never subjected to a good study. He certainly seemed eager to have one done.
He did do a couple of studies but I think they had some statistical shortcomings. Until we get really good studies that attempted to reproduce his results how can say that his results are not reproducible? I don’t think you can say anything except that he did some studies that showed promise but that better studies needed to be done. Short those studies, your comment is a subjective as you believe his treatment protocol is actually :).
As to the placebo effect – I imagine that many of these patients had tried and been disappointed so many times that the placebo effect was meaningless. Pacing, however, is something that could have been a confounding factor. These patients may have paced like they never paced before.
My guess is that as with Ampligen a certain set of patients do very well on antivirals. I know of a couple of people who tried Valtrex who didn’t improve but who literally recovered with Valcyte. One continues on the medication to this day. Of course, a lot of people don’t do well on antivirals. Is that because they were the wrong subset, weren’t on the drugs long enough, didn’t take enough of the drug or ?????
I think we should take note, though, that he was quite happy with the progress he saw in his patients.
What we really need is what other diseases have – good studies. Until then it’s all speculation.
I saw Dr Lerner for 3 years. I remained at about a 4 on his scale the entire time. He did not seem to notice that I had no improvement. I believe he would have continued to treat me forever, but after three years, I felt I had given it a fair try. Unfortunately, there are no other CFS doctors in my area. I now see a POTS specialist. Still have no improvement.
You sure gave it your best Pam…We have a POTS recovery story coming up. I don’t know if its going to help you or not though. It’s a little unusual. Good luck!
Very well said Cort!
How is Dr. Montoya’s protocol similar to or different from Dr. Lerner’s? I’ve read some, but others here may know more.
Kind of different topic, bu related: I’m finally on the waiting list for the Stanford CFS clinic and I’m hoping I can learn to finagle the insurance company into paying (a skill fibro/Cfs patients learn, as discussed above), so any hints about that would be great. I currently have Kaiser, but are switching to blue shield premier in December. (Kaiser doesn’t cover “experimental” treatments). Stanford billing dept told me they accept blue shield ppo. But a friend who has been there said they don’t accept blue shield. Is there any way to get some of this figured out ahead of time?
I put in the wrong email address. It’s email@example.com
Montoya’s PAs only dose Valcyte at 450mg twice daily. Stanford tried me on Valtrex, Famvir and Valacylovir alternatively first. I questioned the dose of Valcyte, as I had heard 900mg had been used in one study. The PA says that they found no benefit to use 900mg, that it was only a “loading dose”.
You can believe the billing department of call your PPO to see if Satnford is in Network. I have an HMO, but they pay for Stanford because they have no specialists for CFS in network.
My RX insurance covered everything except Famvir, fo no logical reason.
I think the big question with other doctors is if they use as intense a protocol as Dr. Lerner did. I happened to see a prescription for Valtrex from another ME/CFS expert; it was probably 3-4 times less than Dr. Lerner uses. That really surprised me. ‘
There may be a wide difference in protocols, and I doubt many doctors keep up with antivirals as long as Dr. Lerner did. I really have no idea who is right – I just believe that there are probably differences.
Hi Cort, Thanks for this blog, it is so helpful! I have had CFS for 20 plus years. Now on IVIG (6 years) and Valtrex at 2-3500 mg per day for over 3 years. I am curious in your research, how long do people stay on the high dosages? My titers were coming down now they have been stuck (still on high), for a year. When do you stop treatment and what happened if you stop treatment? I would like to know what Valtrex dosages other doctors use. Thank you!!
Found this and other articles relating to CFS on this site. Looks like Dr. Lerner may not have been completely alone on this one. 🙂
Since an antiviral works in some patients I have to wonder whether ‘natural’ antivirals might have at least some effect. I’ve watched a show called Your Health with Dr. Richard Becker for some time. He keeps up with many of the studies in Pub Med that document trials with these natural methods. Things such as Lysine which inhibits double strand DNA virus’ mono and herpes, Astragalus which does the same including inhibiting cytomegalo virus, Inositol for viral regulation and can increase natural killer cells up to 50%, the probiotic Plantarium which reduces Herpes, olive leaf which can also kill the double stranded DNA virus’ as well as shingles, curcumin which stimulates repair of DNA and oil of oregano which can even kill a cold virus in 20 minutes in a petri dish. (All this info came from my notes while watching the program.) So, I think my next ‘rabbit hole’ will be to add some of these to my regimen and/or increase some of the ones I’m taking to a higher therapeutic dose.
Can you detail a bit your “natural” antivirals. I tried some. The problem is that I can’t stand standard antivirals, so I try the natural route for herpes.
Herbal anti-virals are working for me Stephanie. I have been on an EBV protocol for 1 yr and many symptoms have improved for me. I no longer have that fluey, achey, feel like death warmed over feeling. My orthostatic intolerance has improved significantly, muscle pain and joint pain much better, stamina better……….no more weird heart symptoms and I could go on with the improvements.
The natural anti-virals I am taking are Cats Claw, Licorice root, L-lysine. I have been on these for a year along with other supplements such as zinc, B12, Vit. C and some others. Healing has been slow but I am a different person than last year and I didn’t think it was possible. The key for me was to stay the course no matter what. There are many other excellent anti-virals that a person can try for viruses also. Olive leaf as you mentioned, Monolaurin, lemon balm, Silver hydrosol,….etc.
I started out with low dosages and worked my way up.
I hate to be ‘that person,’ but how do you know that your recovery has anything to do with the supplements you’re taking? Are you also using pacing? Pacing is widely considered to be the best protocol for achieving some recovery in ME/CFS.
Glad you’re still improving Tammy!
I get the feeling that this anti-viral protocol is really for those with ME/CFS and not for those of us with Fibromyalgia. Thoughts?
I would also like to know Martinigal? I am desperate for some help with my fibromyalgia.A constant cycle of no sleep and pain. One leads to the other and l have found nothing to address either. I do feel sleep is the greater key ( although pain wakes me) l have not slept a whole night for 35 years since having my first child and his not sleeping for nearly 2 years begain this cycle with anxiety. Nothing l have done has solved my sleep issues and at times can go several days with none at all which of course intensifies my pain .Aghhhhh!
I wonder if perhaps antiviral treatment is just one of the things that should be routinely tried during the diagnostic period to actually rule out ME/CFS. (I mean, if you’re sick due to a virus, you don’t have ME – and that’s a good thing). I know my doctor did put me on an antiviral for a few weeks while I was being diagnosed, but I think it was Famvir. It did exactly nothing.
The Rituximab drug trials in Norway are much more impressive, helping over 60% of the people in the trial – so it’s looking more and more like ME/CFS is really an autoimmune disease, and we just need much better diagnostic criteria to make sure people are being diagnosed with the correct thing. Obviously we don’t want to kill off the immune system of a person whose actual problem is a chronic viral infection – nor dose up someone whose immune system is attacking their body with organ-damaging antivirals.
The problem with viruses in ME/CFS is that there’s some evidence that the standard rules may not apply. For instance, there’s evidence of incomplete replication of EBV in ME/CFS. In that instance the EBV is believed to be pumping out proteins into the immune system that are causing it react.
In that case where active replication isn’t occurring a short course of Famvir wouldn’t have a chance.
Lerner’s studies suggested that he was helping a majority of patients as well but I was told that the studies were flawed unfortunately. We needed better studies to be sure. We’re certainly getting those with Rituximab…
One researcher said, by the way, that’s no evidence that Rituximab was allowing viruses to surface – a bit of a surprise – but a welcome one.
Well, that certainly is a welcome surprise, though I think we’ll have to wait for a much larger study to confirm that.
Many viruses become embedded in the host’s RNA, which means that as our cells replicate themselves in the normal process of life, the virus is replicated along with it, perpetuating the virus. How many years do they say it takes a body to be a whole “new” set of cells? Seven? So the longer we’re sick, the more the virus is literally part of us. And probably the longer it will take to recover, even with the help of the right drugs. Targeted anti-virals, like those recently created for Hep C, are the only way to really get rid of these smoldering viruses. We need many more targeted anti-vitals created so that we can treat the wide variety that any one of us has at one time. The -cyclovirs were created for Herpes simplex 1 & 2 primarily–because there’s such a big market for them. The HHV’s that do us in with ME/CFS (HHV-4/EBV, HHV-5 cytomegalovirus, HHV-6, and HHV-3 zoster/varicella/shingles) are cousins, so the drugs aren’t as targeted as they could be.
I have been taking Acyclovir for two years. Dr. Dantini of Palm Coast, FL is treating me for HHV-6. I am not getting better, but it does prevent me from getting the shingles outbreakd. They were very mild outbreaks with mild to moderate pain. He also does allergy testing for food sensitivities. I have not done that testing. My insurance does not cover that. I am in central FL if anyone has any Dr. referals. I have Meicare insurance.
Try to get in at Institute for Neuro Immune Medicine at Nova Southeastern University in Miami. You may have to get on a waiting list but they are excellent ME/CFS specialists. They are now accepting Medicaid/Medicare. Definitely worth the short trip. I go to see them from much farther away;)
Thankyou Hezza, maybe I can do that if I can pull resources together for the trip. I have a friend in Broward county that I could probably stay with for a few days. Would you please give me the contact info? That’s good to know about the Medicare/ Medicaid. I saw Dr. Klimas lecture once many years ago when I use to live in Palm Beach County. I am in Volusia County now.
Correction: They do not and have not accepted Medicaid at all. Medicare is OK, though. Double-check with Nova billing and see. Most recent check on this was Aug. 11. Great team there is always learning new things and are willing to listen to patients. They are now much more flexible on the Lyme and mold mycotoxin issues, and have a protocol for mold per a year’s worth of training. Anyone there can help. Floridians are lucky to have them. For those who have the means, travel from any distance. And they are gaining on the learning curve for methylation/DNA issues, too.
I have responded before to your discussions with my article Are You Fermenting?
https://coconutcreamcare.com/2016/01/10/are-you-fermenting/. Cort Johnson was kind enough to post a link to that article on his forum but I can’t seem to find it. I have many articles on my web-site coconutcreamcare.com that tells the story of my getting well from being very sick from
Candida Overgrowth which reminds me of the symptoms of ME/CFS and Fibromyalgia.
I have been using natural food to get well but recently I came down with a debilitating flu and thought I had lost the war. This flu didn’t make me as sick as i was four years ago but I wasn’t feeling very well with a fever.
I search the Web almost daily and normally I don’t see anything in the press about this disease or the ability to cure it. That is why I’m so happy to see news stories and article on the subject of fungus.
I recently I ran into an article about my favorite subject – Fungus or Candida. The article is about a professor in Scotland with the title Fungal Infection “threat” to human health. In the article he says Candida Yeast is a Fungus. —I knew that — or did I??? Suddenly I understood why my antiviral homeopathic medicines seemed to work so well and the antioxidants and antibacterial ones help my immune system but I still was battling yeast like with this recent flu.
I quickly gathered a list of homeopathic remedies for anti-viral and like magic in a week the flu and its dark green mucus, fever and coughing fits were gone. This is the first time in my history of over 70years of being able to get over a serious cold without antibiotics. I feel I have new power and know I now understand Candida in a whole new way.
I have suddenly seen a whole new approach to Candida my use of antioxidant natural food help rebuild my immune system but I need a list of anti-viral also.
Here is the link to my article Fungus Infection Makes news
and here is a link to the BBC article Fungal infection “threat” to human health
Excuse me if I’m repeating myself. I get confused on how to properly comment and reply to people.
I am so interested in this subject, but find it seems to related mostly to ME/CFS, while I suffer from Fibromyalgia.
I have 3 autoimmune diseases and countless other health issues.
I am very interested in the aanti-virals that Tammy and Stephanie are trying. One thing Tammy said interested me greatly; that you (Tammy) were able to get rid of the flu like aches. That was the single most troubling symptom of Fibromyalgia and my only relief was taking lose dose Methadone. Methadone replenished my energy and cleared my brain. It rid me of those darn flu like symptoms and I am so much better for it.
That being said I’d much rather take natural anti-virals than Methadone.
The one issue I do have with many herbal preparations is there interaction with coumadin, which I am on for life after suffering 4 Pulmonary Embolisms concurrently. Thoughts?
I’ve been taking valacyclovir (3g/day) for a number of years, maybe 5 or so. This maintenance dose seems to reduce many of my symptoms. Lying in bed, I don’t feel bad most of the time (not like I have flu). If I get a cold or cold sore or ulcers in my mouth or swollen glands in my neck, I will add another one or two daily, and it seems to help. The one time I tried olive leaf, I herxed so badly I had to get off of it. So it must be powerful. I just couldn’t take the reaction.
I wonder if the people whom anti-virals help are those with flu-like symptoms, lots of infections, sore throats etc.
I was in that sub-group 25 year ago when I first got ME/CFS, but it only lasted for a year or so.
Now it’s just the usual–severe cognitive problems, debilitating weakness, NMH, etc.
I have been sick for 10 years , with overwhelming, debilitating fatique, being the main most persistent symptom( but by no means the only) testing positive for lyme shortly after I got ill. But after many years of trying different combos of antimicrobials both herbal and pharmaceutical I have had very little improvement and now doing worse. This drastic decline came out of the blue, after 11 months of doing bee venom therapy, which by some is thought to be immune stimulating or immune modulating, depending on your point of view. Bottom line is that I always seem to go down hill with any treatment that affects the immune system and have never improved on any “killing ” protocols. For a while my intuition has said” it feels autoimmune”. Acupuncture has sent me into a spiral of hell. I think we all could be in our subsets. I am soon to make an attempt at seeing a rheumatologist again, armed with the latest simmaron research study on the immune gene changes in chronic lyme. Anyone had any success or have any pointers on seeing the rhuematoligst?
I am greatful to this doctor who I have never met. I am being treated under basically his protocol by a different doctor with some new things that have had encouraging research results for others.
I also read all of these short forms of the recovery stories in the voice of the narrator from Monsters Inside Me, and sort of hope I am not alone.
Love your sense of humor! Thanks! I sometimes channel Brando for some levity, or Ethel Merman.
I don’t take anti vitals because I don’t have to as I don’t suffer any viruses anymore. If you treat the cause you don’t suffer.
As early as 2009 I was doing exhaustive (literally) research online of all medical literature of treatment and studies of CFS. Dr. Lerner was by far ahead of others in patient improvement outcomes. For several reasons I chose to go see Dr. Klimas in Miami instead and hoped she would be willing to start me on antivirals. Her practice at the time was a private one and she did a 6 hr in depth review of my history, physical and a viral bloodwork panel. She made many suggestions for me but an antiviral was not one of them. I tried her regimen for a year with no results and then had a phone appointment with Dr. Dantini, I’ve been on Valtrex ever since, with one 4 month lapse that saw all my worst symptoms return. Dr. Lerner was way ahead of the curve in my opinion, he used himself as a guinea pig on more than one occasion, I guess that’s how he was able to recover himself.
I am in Central FL, and have been on Acyclovir for over two years as a patient of Dr. Dantini. In Sept my white blood cell count went down to the low range. Then in Oct I caught a terrible head and lung cold while on Acyclovir. I decided to stop the Acyclovir which I was taking for a reactivated Shingles virus. The Shingles did come back, and my white cell count is normal again. I just decided that it was time to stop Acyclovir. I have not had the energy to go back to Dantini. I am now battling an adrenal disease. I still have more tests to do, and am now on steroid therapy because my cortisol was >1. If anyone reading this has experience with Adrenal Disease I do welcome any advice that you can give me. I haven’t figured out how to use Cort’s blogs. I am open to receiving advice on that too. My brain fog is bad, but since my Adrenal Disease it is worse. It’s not Adrenal Fatigue. (Adrenal Disease is called Primary or Secondary Adrenal Insufficiency. Primary Adrenal Insufficiency is also called Addison’s.)
My brain fog clears up with the valtrex from Dr. Dantini. He allows me to have phone appointments since I live in NC maybe you could call and make a phone appointment. You need to keep it short because the time adds up so have your top 2 or three things to have him tackle for you, write it out so you can keep on point. I get the valtrex at Costco and it’s the cheapest you’ll find it if you’re self pay. I feel that my supplements help a lot CO-Q 300, krill, N-acetylcysteine (NAC), IP-6, magnesium w/calcium, vitamin D3. Other than that, I think it can be difficult to tailor what works for you and HPA dysfunction has no one best way to fix it so having a good doc to help you is important. Ask for samples when you can. This illness is expensive to treat and nothing seems to make me well, but I’ve found a place I can cope with. Just keep plugging at it and be gentle with yourself.
I have heard of HP Dysfunction, and don’t know if that relates to Adrenal Disease. It’s been a while since I read about it. Thanks for your suggestions!
I am sorry for how much yo must be suffering. Be cautious with the steroids: they tip the immune system in a direction that makes herpes viruses worse. Because of my chronic shingles–break-through flare ups while on the highest doses of anti-veals–I’ve had to learn about all the things that can make them worse. When I have a flare up in my eyes or ear I do need to use Pred drops, but for only a day or two. There is a chance that I will not be able to use them at al in the future because of this chronic condition. Doctor Chia has advised me to be sparing, use only as a temporary emergency need, and taper off as quickly but safely as possible. Good luck to you. Wishing you many better days ahead.
Do you have Adrenal Disease? I have not heard if any alternatives for the disease except for steroids. I am going through tests to determine if it’s Primary or Secondary Adrenal Insufficiency. I do not have much for our of pocket meds, supplements or etc. If anyone knows alternative therapies for the disease I would like to know more. I am not in need of advice for Adrenal Fatigue. What I have is a disease, and I have yet to determine if it is caused by my Pituitary gland or my Adrenal glands. It seems I may have Secondary Adrenal Insufgiciency. The process is slow, and I am trying to get into Shand’s Medical Center right now to speed up the process. I am on a low dose hydrocortisone dose right now, and my Shingles for better, but it’s coming back again. I take L-Lysine as needed and that helps. Please write back if you have experience with Adrenal Disease Carrollyn. Thanks for your suggestions!
Anyone here or anyone you know with Spasmodic Torticollis was recovered using Dr. Lerner protocol?
Does anyone know if the Learner / Montoya protocols can be offered in Ontario?