Four Different ME/CFS/FM Recovery Stories: One Theme?

Discussion in 'General' started by Cort, Aug 25, 2015.

  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Four ME/CFS Recovery Stories

    "My message to all CFS/ME/Fibro sufferers is don’t lose hope—recovery is possible, even if not easy." Dan

    All were successful contributing members to society. Alexandra was a nurse, Dan was married, had kids, a good job and was in excellent physical shape. Mathew was a successful entrepreneur running a business with twenty employees. Only Maureen had had some health problems: she had suffered a series of colds and other problems in in the past year or so. All became so ill they had to quit their jobs. Several became home bound, two were bed bound at times. All eventually recovered completely from ME/CFS. They all recovered in different ways but some commonalities are present.

    Mathew - the Entrepeneur

    We don't know how Mathew's illness started. What we know is that he eventually joined the ranks of the very severely ill. Mathew ultimately had trouble sitting up, saying more than a few words or tolerating sound and other stimuli and or emotional stressors.

    Instead of helping him, the supposedly milder and safer natural herbs and supplements he tried first consistently left him worse off. Nor did any of the many alternative treatments he tried help.

    Instead pharmaceutical drugs - four of them (!) did. After hearing Dr. Goldstein's hypothesis that ME/CFS was caused by an over-reactive nervous system, Mathew found a holistic practitioner willing to go through Goldstein's protocol. Ultimately he hit on four treatments: Baclofen, Mirapex, Chlorzoxazon, and Guaifenesin - none
    none of which is commonly used in ME/CFS and one of which is used - but disparaged by some - in FM. Over the next two years Mathew went from mostly bedridden, very orthostatically challenged and unable to tolerate much stimuli to a complete recovery.

    The Four Drugs
    • Baclofen - is a centrally-acting skeletal muscle relaxant that increases the level of GABA and thus probably counteracts the effects of glutamate - a central nervous system stimulant.
    • Mirapex - enhances dopamine levels in the basal ganglia. It is primarily used in Parkinson's disease. Dopamine is involved in activating the "reward" pathways in the brain. Reduced activation of the "reward" pathways in the basal ganglia has been tied to fatigue in ME/CFS. It is also being investigated in depression and fibromyalgia.
    • Chlorzoxazon - is another centrally acting muscle relaxant.
    • Guaifenesin - is the odd drug out. It's an expectorant often found in cough syrup that assists in removing phlegm. It's use in FM was popularized by Dr. Armand. Some FM patients appear to do very well on it but it has never caught on in mainstream medicine.
    Mathew did not mention muscles spasms in his recovery story. His main problems were exhaustion, OI and tolerating sensory stimuli yet three muscle relaxing drugs were key to his recovery. Two of them increase neurotransmitters (GABA, dopamine) that may be effected in ME/CFS and/or FM. All reduce the hyperactive nervous system problem Goldstein believed were at the core of ME/CFS. Mathew's last drug was different - a stimulant - which has a strong backing in some fibromyalgia circles.

    Mathew was ill for fourteen long years.
    Dan - Family Man: One Way Into ME/CFS/FM - A Very Different Way Out

    Dan's hypothesis was similar to Dr. Goldstein's. He came to believe that autonomic nervous system problems (probably mostly increased sympathetic nervous system functioning) lay behind all his symptoms. He had a lot of them: extreme fatigue not alleviated by rest, bouts of fever and other flu-like symptoms, gastrointestinal symptoms, night sweats, cardiac symptoms, orthostatic hypotension, allodynia, excessive urination at night, salt cravings, and neurological symptoms such as brain fog.

    Dan was a busy man in excellent physical shape when he was suddenly felled by a chickenpox vaccination. About four years in after a sudden relapse concentrated his mind greatly :)woot:) Dan began to develop his ANS hypothesis. He too had tried many things that didn't work (antibiotics, anti-Candida, anti-parasite, anti-inflammatories, anti-virals, acupuncture, supplements and others). The treatment protocol he developed (spelled out in his book CFS Unravelled) required that his treatments be comprehensive in order to hit every problem at once.

    Once he began it he found, interestingly enough, that some treatments that didn't work before now worked. Presumably, they were missing cofactors that other treatments were able to provide.


    In his new protocol Dan attacked his gut problems with diet and supplements, he added B-vitamins CoQ10 and other supplements to assist his metabolism, he engaged in meditation and most importantly, he worked on emotional triggers that upset his, oh so touchy autonomic nervous system.

    Ultimately he achieved a similar goal to Mathew's - he calmed his down nervous system hyperactivity - but by using very different means. It's intriguing that mind/body techniques played such a significant role in Dan's recovery given his type of onset. Dan was a formerly healthy, active, successful person with no trace of a mood problem and his sudden onset was caused by a vaccination, to boot. His was clearly a case of the immune system going a bit berserk.

    Healing his gut - with it's immune effects - was important, and the supplements helped Dan build a foundation for health but Dan placed the most emphasis on "rewiring" his central nervous system using mental techniques. That's an interesting outcome given his onset.

    At a recent Simmaron Research Foundation event Mady Horning - in response to a patient's question about stress - pondered how to communicate about "stress" to the ME/CFS community. She's convinced that a in at least a subset of ME/CFS patients their "resilience" to stress has been lost and has some data suggesting that gut problems may play a role in that. Once that resilience is lost, she said any kind of stress is problematic. Emotional stressors activate exactly the same pathways as infectious stressors.

    Over the next two years Dan went from his lowest point to healed.

    He was sick for six and a half years.
    Alexandra - The Nurse (and Researcher)

    Alexandra was in excellent shape when she came down with the flu. Ultimately she became terribly ill, was mostly bed bound and got around in a wheelchair.

    Alexandra, a nurse was a researcher though. She read many books on health, nutrition, mind/body medicine, psychology, etc. She learned that stressful thoughts create stress hormones and learned to change what she was thinking about. She tried to do everything right: she tried eat right, exercise right, rest right, think right, meditate right, etc.

    She, too, tried many alternative methods unsuccessfully and found that some supplements did help, but ultimately found two main things - a stress reduction technique called Autogenics and most importantly, a dietary change - were the keys to her return to health.

    Alexandra had tried many diets but it wasn't until she tried a high fat, high protein and low carbohydrate diet that she really began to improve.That was a remarable finding for a woman who had tried so many different things.

    Diet, at first glance, does not look like it would affect central nervous system hyperactivity but Alexandra's research indicated that it does. Low blood sugar - a major problem for her (and her carbohydrate-rich diet:)) - increases norepinephrine production (sympathetic nervous system) and reduces serotonin and dopamine levels. That suggests Alexandra's diet and mind/body techniques may have achieved the same outcome as did Mathew's pharmaceutical drug approach and perhaps Dan's supplement, lifestyle and mind/body approach.

    Alexandra was sick for seven years.

    Maureen : the Second-Timer

    Maureen had had an earlier bout of ME/CFS that was set off by an infection and ended by a dose of steroids a year later. Seven years later she was in much worse shape. She was exhausted, had painful joints, insomnia, brain-fog, sore throats. Tests indicated that "many systems" were out of balance including thyroid and adrenal gland.

    Maureen did kind of what Dan did: she did everything. To the protocol outlined in "From Fatigued to Fantastic" of diet, vitamins, herbs and some pharmaceuticals she added acupuncture, meditation and rolfing (connective tissue manipulation). Gradually over time she improved. She is now completely recovered and regularly flies around the world.

    Every recovery story used some way - whether it was drugs, mind/body work or diet - to reduce nervous system activity. Gut work - Mady Hornig is able to easily parley gut issues into central nervous system issues - played a role in three of the stories as well. It's not clear if Mathew changed his diet but everyone else did. These stories suggest that several immune mediated paths (vaccination, infection) lead to some sort of state of enhanced nervous system activity.

    Once the immune/ANS system reset occurred the patients dealt with that - not the initial trigger; i.e. they used different means to get out of the illness than had gotten them into it. A vaccination plunged Dan into his illness, the flu triggered Alexandra's illness and Maureen's cold set her off but it was Dan and Alexandra's gut, supplement and mind/body work that got them out of it. For Mathew CNS suppressing drugs did the trick. For Maureen it was a bunch of things - from diet to supplements to drugs.

    The prevalence of dietary fixes makes one wonder if fixing one's diet may be a necessary but not determinative factor; i.e. having the good diet may be necessary to lay the foundation for recovery even if isn't the answer.
    Would the nervous system hyperactivity hypothesis hold up over time? My guess is that it may apply to a significant subset of patients but not all. A recovery story blog featuring Dr. Lerner's patients and his antiviral techniques is coming up but even there Lerner tells his patients they must avoid stress and overexertion for the antivirals to have full effect.

    Most of the patients in these recovery stories engaged in quite a bit of trial and error before they found the way. Most slowly moved their systems back to normal. Once they started getting better, though, each achieved health within two years - something to think, maybe, if your trajectory on your current protocol is a bit longer.

    That some recovered after being very, very ill was hopeful. All exhorted people with ME/CFS/FM not to give up hope.
    Last edited: Aug 26, 2015
    Hope, kauri schmid, Tami and 5 others like this.
  2. tatt

    tatt Well-Known Member

    I like recovery stories, they provide hope. When I had a severe relapse I really noticed that my resistance to stress had vanished. I'd always coped well with stress and suddenly I couldnt even handle reading a book or getting dressed in the morning. I got quite a lot better on supplements but I'm still a long way from well so anything new to try is welcome. I've also noticed the sometimes things that didnt seem to help do and vice versa. This could mean that the improvement is unrelated to the things that seemed to help or that you need to remedy something (in my case perhaps vitamin D and/or magnesium deficiency) before you can use something else.
    Tami, Merida and melamine like this.
  3. justME

    justME Active Member

    think it's so weird that of all the recovery stories I've read or heard of mine is (will be..) so far the only one that seems to involve the at time prrretty painful (so it's not something that would be skipped in a story) process of whatever it is that's making even my braincells pop and twitch and whatnot, the others just.....get better!
    Merida likes this.
  4. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    It's interesting how things can work at one point and not the other. I remember Goldstein reported of a women for whom one drug took her out of bed allowed her to do all sorts of stuff - and then suddenly it stopped working - her improvement vanished - and it never worked for her again....
    fablepd, Tami and Merida like this.
  5. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I haven't seen that either. There is the "herx effect" with antivirals - but that doesn't seem to get reported on much.
    Tami and Merida like this.
  6. waiting

    waiting Member

    Interesting commonalities between these recovery stories.

    "Emotional stressors activate exactly the same pathways as infectious stressors." -- this is a big statement. Have we heard this before? Maybe I've read it in the past & forgotten -- or is it new?
    fablepd, Tami and Merida like this.
  7. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    This is one of the more surprising immune findings. Andrew Miller has said that they expected that the immune activation following emotional stressors would be very different than seen during infections but it's apparently not.

    I think it must be on a lesser level, though - because we don't ordinarily experience all the flu-like symptoms when we get emotionally distressed - except we do I think tend to feel more fatigued, have difficulty concentrating, don't sleep well and have higher pain sensitivity - so there is substantial overlap.
    Melanie and Merida like this.
  8. waiting

    waiting Member

    Thank you for clarifying that for me. This is really interesting. ME experts have long said that ANY kind of exertion worsens ME symptoms -- physical, mental, emotional.

    Nice to see hard data emerging on this. A promising area of further study.
    Merida likes this.
  9. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    In my experience - particularly when I'm doing worse - they all produce the same things. Actually when I'm in bad shape and an emotional stressor comes flying by - I get all my flu-like symptoms. When I'm doing better - not so much.
    Merida likes this.
  10. Merida

    Merida Well-Known Member

    I go through the same thing as far as my perception and physical experience of stressors. This is an important observation, which is reported by many. I saw this pattern in my Mom and in my son, too.

    But I do not believe it is the stress that is causing the illness. In 1992 ( 6 years before onset/injury) I went through extreme stress when my daughter was terribly injured in a car accident -major surgeries, etc. Got through this okay. I did not develop pain or fatigue.

    Thanks, again, for this important report, Cort.
  11. lisapetrison

    lisapetrison Active Member

    For a while, I was interviewing in an in-depth way everyone I could find who have substantially improved from a severe level of "ME/CFS" or related diseases such as Lyme or fibro. I would talk to people for about two hours, asking them to go systematically through their case histories.

    Basically every single one of them had a mold component involved. In many cases, people reported having gotten sick in a blatantly moldy house and knowing that they were reactive to mold, and having moved away from that years before (but having brought all their stuff from the bad house with them). In others, they actually went to a lot of trouble to get rid of all their possessions and then got much better soon afterward, but neglected to bring that up in the public interviews about their recoveries (e.g. mentioning neural therapy or some other treatment as being wholly responsible).

    In some cases, people didn't report that mold was an issue, but cited feeling much worse when in some building and much better immediately after moving to a different city and seeing a new doctor (giving all the credit to the doctor). In others, they reported having achieved "healing peace" by putting aside all their stuff and going on a spiritual retreat in a beautiful place.

    I don't doubt that any of these people benefited from the things that they say they benefited from. In general, everything goes better without mold. Treatments that never worked before suddenly start working wonderfully, once people get more clear

    But still, based on my experiences interviewing people, I wonder if mold may have been an important background factor for them.
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  12. Kurt

    Kurt New Member

    These stories remind me a bit of the recovery of Mike Dessin, who I believe received direct nerve injections of anesthetics to calm the CNS. Or something like that. But several other people tried the same protocol with mixed results. Would be interesting to see how these approaches work in a statistical sample of ME/CFS patients.
  13. Merida

    Merida Well-Known Member

    The observations of individual, precipitating factors seems very important. No mold here - in hot dry climate. We did have one person in support group that felt certain her situation began with a mold problem. However, here in Los Angeles, I can only recall one or two others who related to the mold issues as a causative factor. ( I led a large support group 13 years.)

    Gee, I think a geographical study might very revealing. Don't know of any ???
    Lissa likes this.
  14. Tami

    Tami Active Member

    I've never heard that before either; going to look into it.
    Merida likes this.
  15. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I can't think of any major stressors that touched off my ME/CFS/FM either.
    I recently came across a story of a migraine sufferer who got through the big stresses OK but it was the little day to day things that tended touched her migraine off. I wonder if that's true for most people with ME/CFS/FM? It is for me (lol)
    Merida likes this.
  16. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    For me ME/CFS/FM is a hypersensitive, over-reactive disorder - so why not over-react to mold as well? I have MCFS and I'm sure mold is a part of it. I just cannot handle old buildings (without carpets; ie mold). Nor do I do well with new buildings (outgassing chemicals). A new house being built across the street - bothered me greatly for six months.....I couldn't sleep or work in MY house. It's amazing how sensitive one can get.
    Merida likes this.
  17. Merida

    Merida Well-Known Member

    Wow. So interesting. We really are different from the 'norm.' And think how valuable we would have been to more primitive tribal/hunter-gatherer societies - able to sense and detect things that most people would not know about.

    As I mentioned, my osteopath ( ha ! Qigong master ??) told me I am going to get well. I just asked last week, " Why am I so mentally and physically exhausted ? Where is the problem?" After the session, he said my 'issue' is in my brain. He suggested this visualization : Imagine a bright light in the center of brain. Have it travel down to the solar plexus, then over to one adrenal gland, over to the other adrenal gland and back to the solar plexus.

    So, . . . ?????????
    justME likes this.
  18. justME

    justME Active Member

    that dying off part was just a few hours (of high fever), then the herxing of mé started :cool: but sharing my "little critters infect us → take over metabolism → once there long enough it's not enuf to take the bugs out anymore but cells need some other meds to give 'em a (painful&scary) kickstart"-theory is getting a little old/tired (too :arghh:)

    if someone with a sore throat and lymph nodes would just trý this stuff then that would save so much typing
    Last edited: Oct 24, 2015
  19. Recliner

    Recliner Member

    What is that???
  20. Recliner

    Recliner Member

    What is that?? Does it work for ME?