Four ME/CFS Recovery Stories
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.
[fright]
[/fright]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[fright] 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.[/fright][fright]
The Four Drugs
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.
[fleft][/fleft][fleft]
[/fleft]
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.[fright][/fright][fright]
[/fright]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.
Conclusions
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.[fleft]
[/fleft]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.
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.[/fright]
"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.
[fright]
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[fright] 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.[/fright][fright]
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 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
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.
[fleft][/fleft][fleft]
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.[fright][/fright][fright]
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
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.
Conclusions
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.[fleft]
- Take the poll: What Kind of Protein/Fat/Carb diet are you on?
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.[/fright]
Last edited: