I’ve had CFS/ME for 21 years. Nearly 6 years ago I began to recover from a three-year stint of being completely bedridden – the last few months of which I was near death. The first time my doctor saw me he was amazed I was still alive. I was bedridden, emaciated and intolerant to even minimal levels of stimulus including light, noise and vibration.
Mike Dessin with severe ME
With his help I regained 85% to 90% functioning and have been improving each year. The only vestige of my former illness, is having to rest a little more than usual after consecutive days of extended mental or physical exertion.
- See Mike’s Original Recovery Story – “Listen To M.E.” here.
Six years later I thought I’d mostly put the illness behind me until I had an incident that would change my life again. It was just minor surgery – eye muscle surgery. I would be under general anesthesia for a mere 25 minutes. For any normal human being this would have been a simple procedure with an expectedly quick recovery. But, it was anything but simple for me. In fact, to my immense surprise and horror, it propelled me right back into severe CFS/ME.
I had gone into surgery feeling really good, living my life close to the level of a normal person. My life included working part time comfortably, regularly working out at the gym and attending most of the social activities I was invited to.
In this blog I will describe what happened and I will share insight on feeling this disease at every level. Also, I will share additional insight from speaking with top researchers, from advocacy work and from healing myself over the past 21 years.
This is my viewpoint as a patient based on how I interpret my experiences! Fellow patients can choose whatever path they want in dealing with this disease. They can and obviously come to their own conclusions, no need to listen to M.E. 🙂
POST SURGERY
It was minor surgery
It’s hours after surgery, I feel a little groggy but in general feel nothing unusual. I’m just relaxing watching a lot of TV and soon it’s time for bed.
Day 2 – I wake up feeling a bit worse. Oddly enough, I can tell that my balance is a bit off, and I feel sluggish, kind of like I have a bad hangover. It’s no big deal but I am surprised that instead of feeling better, I’m feeling worse.
Day 3 – It’s become clear something is going on. I go to the doctor that has been treating me for 6 years. I tell him that I know surgery can be rough but I’m feeling some of my old ME symptoms. I get my typical treatment and he tells me, don’t worry your battery is just low from the surgery. I think that’s a vague statement. I mean what does battery really mean!! He seemed very confident, though, I even thought he had a little smirk on his face!
He’s confident that I will soon get well but I’m not. I’ve been through this rodeo before and I know if I continue to get worse I won’t be able to fend for myself. I need to find a safe place, so I go to my best friend’s house where I know his family could care for me if I get worse. Sure enough I get much worse!
Day 4 – is a nightmare…I actually feel like I’m 75% as severe as my worst moments with the disease. I walk a couple feet and my legs literally get stuck and are unable to move forward. My brain feels completely disconnected from the surrounding environment. I’m experiencing extreme malaise and, of course my light, vibration and noise sensitivities are also back.
My ability to communicate, whether spoken or typed, is limited to about 45 seconds. Pushing beyond that causes an indescribably strange, stimulated feeling I know very well from my past illness. I have to limit laptop and cell phone or severe symptoms occur.
Let me tell you, there is no scarier feeling in the world than going back into the abyss after being recovered. I’m shocked how quickly this is happening. What took me a decade earlier has happened in only three days. Even though I’m not as severe as my worst moments with this disease, the debilitation is severe.
The biggest difference this time, though, is that I still can think without too much confusion. The questions ratchet through my brain. I had been nearly well for six years! How could such a short, simple surgery have caused me to collapse so quickly? Will I be stuck like this forever or will I recover? I have no idea what’s going to happen. The minutes and hours begin to add up as I lay in bed staring at the ceiling. I start thinking back to when my illness started 21 years ago…
THE BEGINNINGS
It was late summer. (I’ve never spoke with a true atypical CFS/ME patient that did not initially get sick in the summer or fall.) I felt nauseous and started to get a fever, a real bad one. My doctor urged me to go to the hospital which I never did. Looking back it’s kind of funny I didn’t go to the hospital because I stayed away from hospitals like the plague as an advanced ME patient. Anyways, the fever lasted roughly a week.
After that first week I still had some nausea as well as this pesky heart symptom which felt like pericarditis. I also felt a twitch in the lower half of my spinal cord when I sat up straight. Looking back, I realize that a virus probably took up primary residence in my gut and then got real greedy and took up secondary residences in my heart and spinal cord! Yea this virus was a real Son Of A Bitch!
I’m pretty sure I know its name, but I’ll just call it SOB. SOB has many friends such as CMV, EBV, HHV6-8 who like to tag along in the chaos and hitch a free ride on its coat tails. They cause a real commotion, always wanting all the attention. They even like to flare up during SOB’s initial infection and sometimes even end up taking the blame for their good friend who only comes around in summer and fall.
A battle then ensues – a battle that seems to have three components: SOB virus, autoimmune response and injury. Conquering one without the other seems futile.
Two Phases
CFS vs ME
We all know Chronic Fatigue Syndrome is an absolutely ridiculous name for our disease! The exhaustion we experience seems to stem from nervous system burnout, inadequate blood flows and mitochondrial dysfunction. In severe cases – as has happened to me twice – this can make the slightest mental or physical exertion nearly impossible without extreme repercussions. As bad as this seems, our symptoms extend way beyond mental and physical exhaustion.
I feel like the CDC’s CFS definition accurately describes my illness for the first ten years. The way CFS is described is comparable to the CDC investigating HIV and saying it doesn’t advance to AIDS. (As a matter of fact, not even mentioning AIDS exists!) The CDC relabeled ME as Chronic Fatigue Syndrome when investigating outbreaks in the 1980’s. Not only did they relabel the name, but they softened the definition dramatically. I’m not sure if this was an honest mistake due to lack of long term investigation or on purpose.
I refuse to accept the CDC’s current definition of CFS and exclusion of ME. This is the way I look at it: there are two phases of this disease. First, there’s the CFS phase involving bouts of exhaustion, lack of muscle stamina, sore throats, brain fog and post exertion malaise. This phase generally matches the CDC’s description of it.
The second phase, the ME phase, matches the description by the World Health Organization going back to the 1960’s. After my 10 year mark when I developed many more symptoms, it literally felt like I had a different disease from CFS. Just before I entered into what I call my ME phase, my CFS became more severe. I developed night sweats, neuropathy and exhaustion so extreme and heavy that it felt like it was hurting me.
During the CFS phase, my immune system was so over active, I could tell a day in advance when I was gonna get a cold. Oddly, the day before a cold I would feel much better than usual. When I developed ME, though, it felt like my immune system ceased to exist.
The ME Phase
The new symptoms that marked my ME Phase were extreme confusion, inability to think, extreme constant malaise, spinal cord pain, neuropathy, tender spots, brain unable to take in environment around me, thick haze in vision, floaters including cellular debris, purple dots, yellow dots and black dots in my visual field.
I had a feeling of a complete disconnect in my brain and was unable to understand people when they spoke to me. I experienced all kinds of different heart palpitations, I was unable to sleep for long periods and I got myoclonic jerks when trying to sleep. I had POTS, ringing in my ears, I urinated frequently at night and my legs “got stuck” as I walked.
I also felt like I was low in oxygen and gasped for breath, I had various rashes that didn’t clear with traditional treatments, aches in different places in my head and on my scalp, was dyslexic, was unable to move jaw muscles, had a lump in throat, food allergies, alcohol intolerance, EMF intolerance, leaky gut, light and noise sensitivity, vibration sensitivity and my brain felt like it was being scrambled if I was watching tv or following moving objects.
It got harder to keep my eyes open as my brain started to shut down. At my very sickest I couldn’t lean up. I was pretty much numb and blacked out a good portion of the day – not sleeping but not awake either.
In the past few years there have been publications stating how CFS is real, CFS is real! But does it really matter if there is a worldwide alert saying CFS is real if the disease in it’s entirety is not described accurately? Do young researchers and doctors really give a hoot about a disease that causes fatigue, sore throat and exercise intolerance? Now if mainstream publications said CFS is real and that it progresses into symptoms that bedridden those affected, that would garner attention! (Not to mention, CFS/ME probably has an extremely high suicide rate – higher, I would guess, than just about any other disease!)
ONSET
Sometimes I get a good laugh when someone says I’m part of the gradual onset group. From memory my onset was very acute, as is anyone who has viral initiated CFS/ME. First you get a virus that triggers a process. From that point on, though, it gets interesting.
A small percentage of us get crushed and bedridden from day one. These people literally go right into a moderate to severe phase of CFS, or ME. A higher percentage of us start with mild symptoms that can last years. The disease is tolerable enough for many to live fairly normal lives until symptoms worsen. Both, having an acute onset phase.
Mike had a mild/moderate case of ME/CFS for years before it worsened dramatically
Interestingly, my experience is that the group that gets the sickest right off the bat, seems to have a much higher recovery rate than those who gradually develop worsening symptoms. I suspect that’s because they don’t have a choice but to rest, which allows their body to fight the infection and heal.
Along the course of our disease we accumulate toxins, damage to our heart, nervous system and various other organs. From what I’ve seen, it’s often between years 7 and 10, when the disease really kicks into high gear. Around this point many of us transition from the CFS phase to the ME phase.
Some of us, however, can have mild, moderate or severe CFS our entire life without developing ME. As for myself, it felt like ME developed when I accrued a certain amount of damage to my nervous system. My life limiting symptoms then went from immune system related to neurological impairment.
SUBGROUPS
From my experience CFS/ME itself has no subgroups. I think the only subgroups are people who’ve been misdiagnosed with CFS/ME. CFS/ME, on the other hand, I believe is one disease which is initiated by the SOB virus.
It seems to have subgroups partially because of the phases some people go through. A person in year 2 might not recognize a person in year 12 as having the same disease. This may cause researchers to designate subgroups, rather than labeling us at a distinct point of one illness. I’m hoping researchers can establish biomarkers that can pinpoint what phase of the illness we are in, and then develop treatments accordingly.
In saying that, I think there are four groups that closely mimic ME/CFS.
The ME/CFS Mimics
People With Toxic Injury or Toxicity
The first being those people with toxicity or toxic injury. I suspect many people with toxic injury are misdiagnosed with CFS/ME because many of the same areas are injured as in CFS/ME. I think it’s extremely important, though, for doctors to recognize toxic injury patients as such and not label them as CFS/ME because the treatment approach is very different.
This can be done by asking a few simple questions, such as when did you first get ill and have you been exposed to mold, mercury, pesticides or other major toxins? Unlike CFS/ME patients most toxic injury patients cannot remember exactly when they first got ill. They, will, however, generally remember how they were exposed, such as to a vaccine, moldy house or pesticide spray, etc.
Mike believes some people with toxic injury blew the same fuses as people with ME/CFS but that the similarity ends there
From what I’ve seen with these patients, they can detox fairly easy through IV or other detox programs and get well. Some, however, seem to have lingering nervous system injuries after detox which need to get addressed for them to become fully well.
Most IV’s and most types of detoxification programs are not tolerated well with CFS/ME patients, however, in people with moderate to severe CFS/ME, it can, in fact, make us much worse. Although I think that toxic exposures can greatly exacerbate the symptoms of CFS/ME patients, I don’t think they initiate our illness. We are dealing with much more than toxicity issues.
People With Lyme Disease
The second is Lyme disease – the great imitator. As with toxic injury I think Lyme is a totally different animal from CFS/ME but it produces similar symptoms. Again, it’s important for doctors to recognize the difference as treatments will differ. Most Lyme patients will remember when they got a tick bite or not know when they initially got sick. For some it crept up on them over the years.
They too, like toxic injury folks generally do well with detox and other treatments. Two treatments that seem to do particularly well for Lyme patients are antibiotics and hyperbaric chambers. For complete resolution they seem to need at least a year with either of these treatments.
I’ve never seen an ME/CFS patient get fully better on those treatments. Some seem to get relief for a temporary period and some cannot tolerate either treatment.
People with Emotional/Trauma Initiated Illnesses
The third group is a trauma/emotional initiated illness that closely resembles CFS/ME. These patients seem to have more immediate neurological symptoms without heavy viral loads. Again I think doctors should recognize the difference as treatment course is different with ME/CFS.
Most of these patients remember exactly when they got sick. Generally they will have been in a car accident or have had a family loss etc. They have similar neurological symptoms as ME/CFS patients, such as confusion, neuropathy and other weird nervous system stuff. Generally, if they focus on long term nervous system repair they can have full resolution of their symptoms.
Again, I want to note, as with the others, that trauma and emotional incidents seem to make CFS/ME much worse as well but are not the primary cause of our illness. My illness, for instance, got much worse after the death of my mother and toxic exposures but it was present before them.
People with Anxiety, Depression, Sleep Disorders and Benzodiazepine and Antidepressant Withdrawal
There is one last group I want to quickly mention; people coming off benzodiazepine drugs and antidepressants. I’ve seen plenty of these people and their symptoms closely resemble CFS/ME. The difference being, they generally have no other health problems besides anxiety, depression or trouble sleeping.
However, again I want to note that benzodiazepines and antidepressants can greatly exacerbate CFS/ME symptoms if used long enough! While they can offer temporary relief and seem like a miracle drug, in the long term they can be outright evil for people with CFS/ME. I suspect that with CFS/ME fragile brains, dependency occurs much quicker and withdrawal is much more severe. Even while taking them we can develop a rebound effect that enhances CFS/ME symptoms by many fold. I’ve personally experienced this on Klonopin.
HEALING CFS/ME
I feel the biggest difference with our disease from others, is how heavily we’re impacted by our surroundings. For severe patients especially, nearly every aspect of the immediate surrounding environment is intolerable. In order not to exacerbate symptoms, we learn methods to stay calm and block out everything around us. On the outside onlookers can’t see the unrelenting agony we’re in, and it can appear as if we’re faking an illness.
If a friend or loved one of a CFS/ME patient is reading this you must trust me on this, and more importantly, you must trust your friend or loved one with CFS/ME. You must trust them beyond what the medical professionals and other family members tell you. The very first thing a CFS/ME patient needs is a SAFE, stress free environment.
This is not a simple cold or flu in which we can easily rest for a few days or go to the hospital and fix. It is a disease that may keep us immobile or bedridden for months, years or even a lifetime. For me there is no worse feeling than the loss of self-sufficiency. But, having the support of just one person can mean the difference between life or death.
There is a lack of credible research, there is inaccurate information and even, steadfast lies about CFS/ME. Much of this misinformation has trickled down from the highest levels, such as the CDC and NIH to our local doctors. Therefore, you must have complete faith in what the person with CFS/ME asks of you. Caring for someone with CFS/ME can be the most difficult and isolating thing a person can do. Healing may take a different path for all of us but a safe environment is a big first step!
I feel pretty comfortable saying this is a neuroimmune disease. I also feel comfortable saying this disease has a course of progression, with pace and severity differing per individual. As patients we will try just about anything to get better. I remember, for instance, having several cabinets full of supplements and medicines. At the same time,we can be defiant as to what others suggest for treatment. This generally stems from a protection mechanism we develop over the years, due to many failed attempts of treatment, abuse and neglect.
In finding a treatment, I would suggest the patient and caregiver, network with like patients. As I mentioned earlier, a two-year patient would most likely not recognize a 12- year patient as having the same disease. I would network with someone at the same severity level, especially someone who’s been sick for a similar length of time.
Ask the questions that I mentioned earlier, such as how and when they got sick. Learn as much as you can to see if the other person is a credible and comparable case. This is really important because our bodies change over the course of the disease. This can dictate what treatments work and ones that may harm us.
Healing is Awkward
I sometimes think if we were given a pill that could stop this disease, half of us would still not get better. Talking from a severely ill standpoint, healing is a really, really awkward thing. It’s not cut and dry at all.
First you have to recognize the pill or whatever you are taking has probably stopped the disease progression but has not healed you! Your post exertion malaise and muscle stamina are not fixed the next day!
Healing can be an awkward and difficult climb
As a matter of fact, nearly nothing will have changed the next day. Healing is really hard to do because you still feel absolutely horrible, sometimes worse than before taking whatever is helping you. Also, you’ve been sick so long you think nothing can work! Your brain has literally been trained to only know sickness and doesn’t recognize the subtle differences between sick and healing! This surely causes many patients to stop treatments prematurely.
There are many treatments that seem to help CFS/ME patients get at least temporary relief. However, a treatment that helps one individual may not help another. As I mentioned earlier, it’s best to find a fellow sufferer who is most like you, who has found an effective treatment for him or her.
Treatments such as antivirals, antibiotics, immunomodulators, relaxation techniques, diet change and various forms of gentle detox have been known to work for a small percentage of patients. Some patients improve just by moving to a pristine environment! These and other therapies can help patients achieve 75% recovery! Believe me, 75% recovery is pretty damn good for a long term patient. Most treatments must be cycled or continued to avoid regression.
I think a well-rounded treatment should target the virus (SOB) and autoimmune response, plus injury to the nervous system. It also feels like the heart and mitochondria sustain quite a bit of damage. I’ve been told damage at the DNA/Genetic level is a concern and must be addressed as well! Most likely, all of these aspects need to be treated for long term resolution. This is not an overnight process! Depending on your severity level, being fully healed can take 3, 5 even 7 years or more, although functional recovery can be attained much quicker.
My Treatment
As for my treatment, core therapies have included acupuncture, neural therapy and pleo homeopathics. I think these therapies can be a true miracle for some CFS/ME patients. A combination of these therapies may lead to long term resolution of our disease.
Success using one without the other depends on the severity of the patient and the skill of the practitioner administering them. It takes a high degree of skill to administer these therapies in a correct manner. If patients are not fortunate enough to have a skilled practitioner, using EAV Electrodermal Screening can help guide the practitioner with these treatments. Much of my treatment focuses on the Central Nervous System. When I’m at my sickest and most sensitive, it feels as though my spinal cord is being attacked, specifically the horns of my spinal cord. It feels to me that this is a primary infection area which leads to secondary/upstream involvement in my brain.
I want to note these therapies are not scientifically proven and plenty of people and organizations try to debunk them as quackery. I would remind you, though, that some of these institutions are the same ones that have misguided us about our disease for decades. Not only our disease but Lyme, Autism and a host of other issues such as vaccines.
Like I said earlier, this misinformation trickles down to our physicians. In most cases when a CFS patient goes to the doctor, the physician will say CFS is no big deal and not know how to treat it regardless, maybe even mistake us for a psychiatric patient!
Most doctors are overwhelmed by ME/CFS/FM
On the other hand, a typical doctor visit for me might go as follows. I tell the doctor there’s a bit of haze in my vision, he most likely would say it seems you have lactic acid build up on your neurons. Then he may say let’s focus on neurolymphatic drainage and your spleen today!
Finding a skilled physician is imperative. Going back to what I mentioned earlier, it’s best to network with like patients to find a safe effective treatment and come to our own conclusions.
When starting a treatment, it’s also imperative to recognize extremely subtle differences that indicate a positive change so you can start rebooting the body and resetting the brain. This can be difficult as healing symptoms can mirror sick symptoms.
My First Recovery
Thinking back 6 years ago, I noticed some of these subtle differences. I noticed strengthening in my spinal cord which allowed me to lean up an inch or two. While this was happening I had pain in my spinal cord, not too different than when my spinal cord was being attacked – but I recognized the difference between the healing and the sick pain. My stomach felt tighter and stronger and I realized I was absorbing nutrients once again.
I had been in a coma-like state. Once I started healing, my brain began rerunning images of so many different things, that it felt as if it were trying to reset itself. I started being able to keep my eyes open for a few extra seconds. In those very short seconds, I noticed my vision was becoming slightly clearer as the malaise and haze was lifting. My sleep started feeling like actual sleep. I had felt numb for several months but noticed my sense of touch, taste and smell coming back.
My exhaustion returned but I knew it was exhaustion from healing. Ringing in my ears came back but I knew my nervous system was singing a different tone – a healing tone. It was like my body was going in reverse through the disease process. I was coming alive but had to participate in the rebooting process to move forward. I knew I was getting treatments but had no clue what they were! I had to go on instincts and trust my body!
When you’re as sick as I was, however, healing can feel just about as terrible as the disease itself. I weighed roughly 100 pounds and could barely think or communicate.
Each day I would wake up and try to do more, something that would have previously had a negative impact. In between doing more, I would lay down and stare at the ceiling suffering all the while. This, though, was the healing process.
If I didn’t do more I would stay stuck at the same level. I did this month after month for 5 months, until I could finally care for myself. After 3 years of being bedridden I would learn how to start living again.
BACK TO THE PRESENT – MY POST SURGERY RELAPSE
Back to my most recent experience. It’s now Day 9 since I relapsed after surgery. Obviously I’ve been thinking about a lot. I’ve gone from being an active, mostly healthy person for the past six years to once again lying in a dark room with sunglasses on and ear plugs in. Thank God I came to my friend’s house so I could at least feel safe and be cared for. I don’t have family in town and he is the one person I could count on. I’ve had long conversations about my disease with him and he knows to trust me no matter what.
I start mentally preparing myself for another treatment tomorrow. Getting to treatment is not easy when you can only walk a few feet. Also, my brain, once again, feels completely disconnected from everything around me. It takes so much willpower to get out of the house but I do it.
The doc comes in and looks at me with the same smirk, saying you’re recovering well from surgery. What the fuck, I say to myself, is this guy kidding me!! He’s practically laughing at a crippled person!! He’s telling me I’m recovering well, but I don’t feel any better than the last time I saw him! I mumbled just give me my treatment so I can get back home, which he did!
I’m back home, it’s the day after treatment and I’m trying my best to notice any signs of healing. I’ve noticed a pain in my spinal cord for a few days now. I’ve also had the ringing in my ears. Can this be the buzzing of a healing nervous system? These must be healing signs, they must be!!
I’ve shown no improvements on the outside but inside things are definitely churning.
I started thinking about 6 years ago, when doc proclaimed to me at the top of his lungs you’re cured! Was he really right? And if he was, how is that I relapsed so quickly?
Well, I know I addressed the SOB, autoimmune response and injuries with treatments. Then I realize I’ve only just begun year 6 of healing from my injuries. Doc said I could take 7 years or more to fully heal!!
I don’t think this is a relapse in the viral sense. I believe the surgery probably caused a great deal of stress to my still healing nervous system and mitochondria. That was the battery doc had mentioned a week ago!!
So I start doing a little more each day. In between doing a little more there are many hours of staring at the ceiling in agony. My body and brain are slowly becoming one again, though. I’m praying each day gets better… and sure enough It did.
My recovery lasted 5 weeks. Six years ago it took me 5 months to be self-sufficient again. I learned a lot my first time around, this time I learned more.
I’m back to how I was pre-surgery. I hope to keep healing and someday be 100%. I know it will take some time but life is great once again, truly amazing.
- Mike’s Original Recovery Story – “Listen To M.E.”.
- Surviving Surgery: Suggestions for ME/CFS/FM patients
- See more recovery/recovering stories
Mike,
Your story needs to be heard by others. I have been sick for 6 years now and have gone from doctor to doctor. Recently, I met a neurologist in Denver who gave me an unusual test. It’s called a P/Q Calcium Channel Antibody test. He said it has only been available for about 5 years now but that most in the medical field are now aware of it. Needless to say, my test results indicated that I had way above the normal range of this antibody. The symptoms that you have I have also had, but not to the extent that you have. I also find it interesting that you talked about how symptoms change. 3 years ago I would not have said I was the person I am today because my symptoms have changed or grown into a new phase, so to speak. Anyway, thank you for writing about your story. I have you in my prayers.
Really interesting Sheree, thanks for sharing that. Does that mean you have an ion channelopathy?
Sherre,
Has this doctor helped you?
Sherree..your awesome!! Thank you!!
Sherree, I live in Denver also and have been looking for a new neurologist (the others I’ve seen have been terrible). Can you tell me your neurologist’s name? I’ve been ill with CFS/ME for 29 years and really need help with my nervous system and mitochondrial dsyfunction. Thank you.
I’m in Colorado Springs and would also like to know his name. Thanks!
Thank you for the time you took to tell this story.
Such courage, such courage!
Thanks Maria!
SO sorry you are going through this Mike. I have talked to people in relapse and it is heart breaking.
I, too went into relapse Year ago. The PENE is waste than ever. I just got out of hosp for 6 days — pneumonia and some other pleurisy thing, i an surprised at how weak I am.
One day at time, Take Care,
Pat fero
Sorry to hear that Pat! I hope you get better…
Pat thank you! Please rest as much as you can and keep healing!
What really struck me about Mike’s story is how quickly he went down and what caused him to go down – the brief surgery. I know of another person with ME/CFS who was not as well as Mike but was doing pretty good all things considered – who was also knocked flat by minor surgery…
It was incredible how badly she relapsed. She only began to recover after she got some saline treatments a couple of weeks after her surgery, and like Mike she recovered back to baseline.
What does it say about whatever is going on in some cases of ME/CFS that this can happen? (I by the way had minor surgery in which they put me under decades ago but after ME/CFS and had no problems.)
I wonder if one thing surgery does is reduce blood volume significantly? I know the folks at Daxor think that many post-surgery problems could be avoided if blood volume had been tested beforehand and increased if it is found to be low.
I think its still a immune system overreaction caused by any stress. Also, I was reading yesterday how NO anesthesia is very bad for anyone with MTHFR, so besides the surgery that could gave contributed. I am very happy you have recovered for it gives me hope.
Back in December, I was at 70%, then my kids got sick. Then I was bedridden for 2 months I slowly climbed back to 40% 2 months after that. The day after my house was remediated for mold and chlorine dioxide was circulated through my house, it was like a switch was turned on and I felt human again. 11 days later my kids got sick and I was back to being in bed. Another 2 months have gone by and I back out of bed but I am still stuck at the same level I was before the switch was flipped on again. Its just so maddening.
It is maddening I agree, Chris! Good luck!
Cort, I had much worse CFS pain following an eye surgery. I talked to the anesthesiologist about this afterward and she said, “well, we made you acidic!” like I was supposed to know that.
I don’t think your eye surgery made you acidic except possibly lactic acid which is a known issue with us and is a common reaction to injury.
My comment above about NO anesthesia is an abbreviation Nitrous Oxide which is already a problem for ME/CFS people. I was seriously thinking about getting a medical alert bracelet that says only ketamine for anesthesia.
I believe that our body does a lot of things in order to try and keep our bodies as healthy as possible. After surgery for example, there is an increased risk of internal bleading. So it may well be that our body responds by decreasing blood volume and pressure. It does not need to be actual loss of blood.
I believe likewise mechanisms might be at work in ME. For example when I discovered that I had quit often low body temperature (35°C in the morning, just lowest indication on a mercury thermometer for Americans and my lowest ever seemed to be 33.5°C during a severe ME “attack”). I acted by doing a lot of things to get my temperature up (extra clothing, hot drinks, small warm ups…) only to find that my leg and joint pains started flaring up and feeling acid-like quickly. When getting back to low temperatures, all was back to normal. after getting somewhat better later, temperature got higher on its own again. It seemed that lower temperature proteced me from inflammation. Moving with low temperature causes extra problems and I improved upon that by doiing some smaal warm-up before walking 30 meters.
On another note, Dr. Ginerva Liptan gloamed onto Ketamine’s effectiveness in FM after patients reported their FM symptoms disappeared for weeks at a time after surgery. When she searched their records she found that those patients had ketamine in their anesthesia.
Interesting, ketamine also being touted as help for severe depression
sure hope your doing much better with that so called quack treatment. whatever helps us, we will take! mine came on with 2 warnings AFTER mercury filling! one month after seeing dentist, so exhausted I couldn’t even eat. it then went away. one month after that severe weakness that I couldn’t even stand. it went away. then one month after that I awoke TOTALLY dead, feeling so miserable I could NOT describe it! but being in a COMA-LIKE state is how I’ve been ever since almost 20yrs. I hit my head a lot! so whatever helps you, go for it and May God Bless You again but this time into FULL recovery!
Was it when you got the filling or had it removed?
got the filling!
Thank you Dee!
your welcome and I pray YOUR better for good!
If you are thinking about getting them removed, I suggest you listen to some videos from CHris Shade with regard to detoxifying.
https://www.youtube.com/watch?v=VA0w4R8s9Ug
Also facebook group for heavy metal detox. I keep hearing how problems with the teeth can be implicated in lots of issues with regard to toxicity.
https://www.facebook.com/CleansingDetoxification/
This article makes it sound like Mike’s illness had nothing to do with toxicity and that those who attribute their illness to toxicity must not have ME/CFS.
It’s my belief that that is not an accurate assessment of the situation. And so, with Mike’s permission, I am sharing a few more details of his story and some additional comments.
I spent a good bit of time with Mike in Columbus (where he recovered) and Newport Beach (where he first got really sick) back in 2010. So I had a chance to learn a bit about his history.
Mike first got sick when he was in college at the University of Cincinnati, with a viral infection that he never quite bounced back from. However, after he graduated, he moved to California, made a lot of money in sales, and was (as he put it) living the “good life.”
Then he got suddenly much sicker. At this time he was living in a house that had been previously sprayed twice with flea bombs and that had obvious black mold growing on the walls.
Like me, Mike corresponded in person with Erik Johnson about toxic mold issues and mold avoidance in Fall 2007.
Mike soon moved out of the moldy house, leaving his contaminated belongings behind.
For a while, Mike was living with his dad in Columbus but concluded the house was too moldy. So he insisted that he be moved (again without any possessions) into a separate apartment.
A month or two later, he started seeing a neural therapy practitioner and pursuing some other therapies. And then started making really fast progress toward getting a lot better.
When I visited Mike’s subsequent apartment in Columbus in 2010, it felt good enough to me that I volunteered to babysit his dog when he went on a trip so that I could stay there longer.
When I visited Mike in Newport Beach about six months later, he expressed concern that I might not be able to tolerate his house there even though he was doing okay in it. But that house felt fine too. And the restaurant he suggested we go to also felt fine.
On the other hand, when I was visiting Mike in Columbus, he handed me some papers with regard to his health history and asked me to look at them. Within a few minutes, I started reacting really strongly and said I felt like killing myself.
I said, “Where the hell did these papers come from?” He said that they were in the moldy house where he got sick and that he hadn’t opened that box for a really long time. Then a few minutes later, he said that he was starting to feel like he was getting CFS again.
I told him to put the box away, and to take a shower and change clothes, and to wipe down the surfaces of the house where the papers had been. And the next day, we were both fine.
So in short – I see Mike’s recovery story as precisely the same as mine.
Both of us got sick with a viral-type infection to begin with, recovered a lot of functioning, and then eventually declined into really severe illness.
Both of us got really sick in a house that had a combination of a lot of potent toxic mold mixed with flea bomb, in an area that periodically had some of the bad outdoor sewer toxin but not a really large amount of it.
Both of us had test results suggesting classic ME (with almost exactly the same level of results).
Both of us learned about mold avoidance from Erik at exactly the same time and followed his advice.
Both of us did a lot of neural therapy and a variety of other overlapping therapies.
Both of us had a short lag time after moving from a moldy dwelling until we started seeing any progress.
Both of us have avoided environments that felt problematic to us and ended up in quite good environments.
Both of us have maintained our wellness over time, though with the potential of slipping back down into serious illness again if we are not careful. (I would imagine that an eye operation could do that to me too, especially if I were forced to be in a bad environment during the operation or recovery.)
So i don’t see my story and Mike’s as any different at all. The difference is on the emphasis.
Although I agree with Mike that toxic exposures are not all there is to ME, I am positing that toxicity in general and mold toxins in particular are at the root of the illness. And so have focused most of my attention on that.
In this article, Mike suggests that toxicity can “greatly exacerbate” the illnesses of ME patients but that he doesn’t think that it initiates the illness. And he points out (rightly) that these patients often have an enormously difficult time with detoxification.
Despite my own emphasis on mold, I don’t think that mold is all there is to it in this illness either. As appears to be the case with AIDS, it may be that there is an underlying pathogen that is common to everyone with this illness and that the mold toxicity is just a factor that causes it to become much, much, much worse.
http://www.paradigmchange.me/aflatoxin-and-aids/
Erik has said the same thing many times – that he felt like the Lake Tahoe epidemic was the coming together of two factors: particularly bad mold (both from the sewers and in the buildings) and a virus of some kind. And that in order to understand the phenomenon, both components needed to be understood.
So despite the fact that Mike does not bring up mold at all in this article, I am not in disagreement with him in terms of anything except for the emphasis.
On the other hand, those who read the article without further information seem likely to come away with the idea that mold had nothing to do with Mike’s case and that he is in a wholly different category of the illness than I am.
Which I don’t think is true and which has the potential of being misleading to those scientists who are trying to figure out what is going on in the illness.
So I felt like it was important to share this additional information.
Thanks to Mike for being so open in sharing his story and for all his work on behalf of those with this illness.
Lisa Petrison, Ph.D.
Paradigm Change
http://www.paradigmchange.me
Thank you so much Lisa for your lengthy addition to this conversation. When I was at my worst, my CNS a mess, I moved into a space w/ an old futon. Old moldy futon. I had an immediate toxic response. Fortunately it had no long term effects. I’ve spent the last few years detoxifying my bod.
Thanks for the follow up on Mike’s writing. The added information is very helpful. I’m glad both of you have found something that heals.
Lisa your feedback is greatly appreciated! Youve had quite the healing journey as well!
Thanks for being a good friend!!
Some of you might be interested in this article – I thought living in dry Colorado it couldn’t be my problem. Interesting about the 25% who have a gene for it – might be worth folks who have CFS to get tested first before diving into an anti mold program?
https://experiencelife.com/article/it-could-be-mold/
Hi Lisa, this cought my attention:
“Erik has said the same thing many times – that he felt like the Lake Tahoe epidemic was the coming together of TWO factors: particularly bad mold (both from the sewers and in the buildings) and a virus of some kind.”
Reading it like this, it seems that seperate they don’t do nearly as much damage. That connects with a lose idea that is growing within me:
=> Are many cases of ME caused by either a strong attack that trigers two disease mechanisms with opposing healing mechanisms or either a single weaker attack upon a body already in disbalance generating the second disease mechanisms that has an opposing healing mechanism towards an already ongoing weakness?
Let me explain what I mean: I discovered last year that I had often very low body temperature, sometimes going well below undercooling. When I tried to “correct” this situation by uping my body temperature, muscle and joint pains flared up very significant. When I noticed that and stopped doing that, all went to the old situation. I tried once more with likewise results. I believe that could have been because increased temperature promotes inflamation (common sporters knowledge). So maybe my body kept my body temperature low to keep this inflammation under control? But with (often very) cold muscles even the slightest exercises is damaging (also sporters knowledge) and can causes tears, pains… and more inflamation. To add a third problem: not exercising weakens the muscles over time and this will cause in the
future even more problems and inflammation with the same ammount of exercise. But exercising enough to keep the muscles well increase inflammation… It’s a three-component deadlock. Improving one thing gets the others go worse faster than the first thing improves.
I partially broke this deadlock by doing a very light warm up before moving distances over 10m (in order to walk with not that cold muscles, start the bloodflow increasing in the legs) and did not do any warm up activity when not needed keeping average body temperature low. After months, my legs where in a somewhat better condition and the low temperature (that likely lasted already for years, I often had problems with thermometers “not going up like they should”) kinda disappeared on its on.
Could this also happen with mold and infection? Mold is kinde like yeast. I read once that yeast can spread through the veins and is very bad for you. Increased blood flow let it spread likely wider and quicker. So blood flow may have to drop well below average in order to heal. But viruses seem to need better bloodflow so antibodies can reach all infected places and fever helps killing viruses. A strongly increased bloodflow would help as fever helps healing and seems to require better bloodflow. If true, chosing either high or low bloodflow lets the other problem go balistic, so only normal blood flow can be chosen by the body, letting both problems get worse over time if non can be solved (by for example reducing mold exposure).
Could that also be the reason why it tends to get more and more difficult to heal the longer the disease exists? As you grow weaker and weaker, other problems with new opposing healing mechanisms “join” the party and you end up with one big entangled deadlock where healing one thing makes another thing much worse?
Thank you so much for chronicling your story — very interesting and truly inspiring!!
So, another example that there is hope. Thank you for bringing it to us, @Cort.
Both my spouse and I have ME/CFS, we both had surgeries, with worsening of symptoms.
My spouse went from functioning for work only…..would crash all weekend…..to being bed/sofa bound after surgery for several months. Then sofa/housebound for years and has never been able to return to work.
I had a blood transfusion after my surgery, and didn’t crash as badly, however still had worsening of all symptoms. (My baseline is mostly housebound status).
I have had the DAXOR blood volume test done, and indeed I have low total blood volume and low red blood cell volume deficits. ( this wasn’t known at the time of surgery, but the surgeon recommended I give my own blood prior to surgery due to high risk of blood loss).
Surgery is such a stressor to the entire system, even for healthy “normals”, so I guess not surprising that so many of us with this debilitating illness go into severe relapse….if we are exercise intolerant, surgery definitely can have a profound relapsing effect!
Wow…thanks for sharing that Anon.
I’m not surprised to hear of relapses following surgery or other stressful experiences. Last year I relapsed badly after falling on the ice and concussing myself (and simultaneously breaking my wrist). Surgery wasn’t needed, but I was given conscious sedation when they reset my wrist, and that experience in itself was traumatic. Add post-concussion syndrome to that and the stress is significant. I’ve spent more than a year simply trying to calm my system down to allow healing to happen.
Thank you for the information on amino acid testing. And, what is the “Neural” therapy that you refer to as well in your recovery?
Mike, thank you, thank you. I wish I could have told my journey with CFS as well as you have described yours. I have been sick since 1978, six weeks after I gave birth. I came down with pericarditis and spent a week in the hospital. I carried the big garbage bag of flu-like symptoms on my back every day for about 15 years before I started to feel a lifting of them. I still feel THE HAND coming down on me at times, but no where near as hard. Thank you again, Mike!
I saw dr. Lerner and he addressed it as EPSTEIN BARR and a couple other viruses and he wanted to put me on an Intravenous Anti-Viral. never was well enough to go through with it though and since, sorry to say he’s passed.
beginning to think its the STRAW THAT BROKE THE CAMELS BACK! Stress in every way shape and form!
Have you looked into Chlorine Dioxide. It is on my list of things to try. You want to get the book on Healing Autism by Kelly Rivera. There is also a facebook group called CDHealth. It is something I am looking into. I think we become a toxic soup of mold, metals, viruses, fungi, etc and I know a few people who have spectacular results with this. I, also, like the concept because you can go slowly, so you can control the level of your herxing. Herxing (for me I am not sure if it is actually due to the die off leaving toxins as much as the body having a similar reaction to Mike’s experience. I look at CD as a two pronged benefit. One, killing off pathogens, Two, exercise for the immune system. By going slowly you can hopefully train the immune system to not be so hyper-reactive. Anyway, its my theory.
Mike, I am so very sorry about your relapse. When you speculate about a prodrome period (before the disease really pops out), you might want to look at Melvin Ramsay’s description of the disease from his 1986 textbook. The name M.E. comes from an outbreak of the disease in the 1950s among medical personnel at a hospital in London. It had been called atypical polio, but with polio supposedly “cured” by the vaccines, they needed a new name. The editor of the journal in which Ramsay published his description of the Royal College outbreak chose the name “benign myalgic encephalomyelitis” – “benign” was immediately dropped by everybody except WHO (heaven knows why) and M.E. was eventually coded by WHO in 1969 in the chapter on neurology, where it remains.
This is Ramsay’s description – note there is a description of the acute form of the disease and the chronic form of the disease:
http://www.cfids-me.org/ramsay86.html
Since most of us are in the chronic state, I reversed the order and put it first – click on “onset of the disease” for the acute state. You might find that interesting.
As you know, I do very well on the experimental immune modulator Ampligen – indeed, I respond much faster than most people. But off Ampligen (twice – once because I mistakenly thought I was cured, and once because FDA took it away from me) I have relapsed suddenly and severely, as you did. (The first time it was after a year; the second time I only had 7 months before the collapse.) Consequently, except for the four years I was off it either voluntarily or involuntarily, I’ve been on Ampligen since 1999. Seventeen years. And I live in constant fear of losing it, though increasingly there ARE alternatives.
Returning to the prison of this disease is indescribably horrible (in the sense that horrible comes from the word horror). All I can think of is two movies – Charly (from the novel Flowers for Algernon) and Awakenings. In both movies someone who has been returned to normal using medicine can no longer have the medicine because of major toxicities, and they return to what they were – with the added awareness of the prison cell their bodies would become.
In my own case, as in yours, the onset of relapse was severe and sudden – the second time it had happened at a baseball game, and the next morning, forgetting I had relapsed, I went to get out of bed and instead of standing, fell to the floor. There was no doubt it was ba-a-a-ack.
I would never have used the word “fatigue” to describe what I had – what was REALLY wrong with me was that my brain was broken (again, as you described). As my family used to say, my hard drive was damaged and I was missing memory chips. I had ataxia, dyslexia, blackouts, absence seizures, unrefreshing sleep, expressive dysphasia, disorientation, and massive confusion. I also had severe pain behind my eyes and in the back of my neck 24/7, muscle pain, and recurring headaches the level of migraines. Although when I collapsed I could not imagine being more sick, over the next four years I got worse and worse. Thanks to internet, I had a good doctor within 3 months of being diagnosed (my students diagnosed me), so I knew about the envelope theory very early on and my family was careful with me – nevertheless, I grew progressively worse, until I was mainly bedridden and could only leave the house with someone pushing me in a wheelchair and sunglasses on. My daughter would fasten my seat belt because I could not figure out what those two things were used for.
In my case, when in that state, I have numerous immune abnormalities (natural killer cell function of 2-3%, 37kDa Rnase-l defect, abnormal cytokine patterns); abnormal SPECT scans and CPET scores, and activated viruses: EBV, CMV, HHV-6A, HHV-7, and at times, Coxsackie B. In 2009 Dr. Peterson found active CMV and HHV-6 in my spinal fluid. That might explain my symptoms!
But every time I’ve been tested, the immune defects and the viruses have either been there – or not been there – at the same time. I don’t know which is the chicken and which is the egg – or whether there’s something else that’s hit and run. With only $6 mill/year allocated to study our disease, it will be a while before NIH figures this out, too. It does seem clear that my own case was related to a severe outbreak of a nasty strain of EBV (mono, glandular fever) at Villanova University in 1990, where I was a professor of history. Normally, when the students come down with mono, the professors – who have already had it – don’t. But in this case, it hit the students very hard – and professors came down with it too. There were three professors in my department alone. That’s why I think this was perhaps a more vicious strain than normal.
I was up for tenure and my doctor would not give me a letter to take time off from teaching, so I still had to drive an hour north twice a week and teach three classes. I had an honors class at the end of the day – I’d put my head on the desk, wave my hands and say – you’re honors students; discuss something.
I never fully recovered from that bout of EBV (nor could anybody explain me how I could have gotten mono three times to that point). Though I considered myself well, I suffered from chronic bronchitis during the school year and increasingly had symptoms that today I know were connected to ME – loss of balance, total alcohol intolerance, increasing difficulty falling asleep, disorientation, and the sensation that everything was just HARDER. Yet I kept trying to get back into shape – I kept trying to keep to the workout regimen of 20 minutes on a Lifecycle 5-6 days a week and the nautilus weight circuit 2-3 times a week. When school was not in session, I was in better shape – I even skiied. But had I known the symptoms of this disease, I would perhaps have behaved myself. Perhaps I would not have collapsed so severely in my office on October 24, 1994 – had I known to stay in an envelope 1990-1994.
The first time I relapsed it was an unpleasant and frightening surprise. But the second time – when FDA took the drug away from me because my doctor in Philadelphia died – i KNEW what was going to happen; I just didn’t know when. And today I live in fear of losing that drug. Or it not working any more.
Personally, I believe the immune system dysfunction happens first. That could explain the “different doors,” as Tom Hennessy used to say. Your immune system could have been damaged by environmental toxins, leaving you vulnerable to being slammed by A Serious Virus, or The Serious Virus (if there’s a hit-and-run virus we don’t yet know about).
I am so very, very sorry that you have fallen down the rabbit hole again, and I hope that you can recover as you did once before.
Hi! I am relatively new to researching everything related to ME/CFS. Could you please explain “the envelope” to me? Thank you!
Connie, check out http://www.cfidsselfhelp.org
Bruce Campbell recovered from CFIDS from strict pacing techniques and has online classes on this. Your energy envelope is the amount of activity you can handle before having post exertional malaise. Good luck.
First of all thank you to everyone sharing on this page; it is extremely helpful. Good luck to everyone.
Mary, thank you for sharing your story and for your activism; it’s greatly helped me. I’ve been ill for 33 years since mono and severe strep throat and I’ve been bedridden for about the last decade. I vowed several hours ago not to post anymore. Other than a handful of posts over all the years, I’ve only really been posting this year with so much happening. If I were smart I’d shut my computer off. I am going to stop but I want to personally thank you. Also, being silent for so many years has its own consequences; as I haven’t been well enough to express myself, I finally burst. I’ve been inspired by the petition you wrote and by your tweet about a patient bill of rights (as well as all of your other tweets). Please write it! Write one that everyone will follow!!! If anything I’ve had to say here http://forums.phoenixrising.me/index.php?threads/severe-patient-requests-agreement-challenge.44267/ helps you, please use it. Thank you again. I’m not on social media and I hope you see this.
Laurie! Thanks for your input and being a part of our conversation!
Laurie,
Don’t give up hope. I find so many new ways to attack the problem every day. It can be daunting and scary, but I think there are different things that will work for different people. Also, since I consider I have lived with 6 different versions of this illness over the last 20 years, I keep having to adapt my strategies. Another strategy I read about recently that Dr Cheney had recommended and has worked well for some people is called the master cleanse (its basically a fast for 10 or more days with fresh squeezed lemon juice, organic cayenne pepper and organic maple syrup. There are lots of blogs if you search for master cleanse and blogs
Thanks Mary for so vividly sharing your such vivid story and the hope that immunomodulation brings. I wouldn’t be surprised if a vicious strain of EBV did sweep through your campus. I would think researchers would be able to identify the different strains in people with ME/CFS if they looked hard.
The NIH is already spending more money on ME/CFS by the way and, of course, the NIH Clinical Center study is looking deeper into the immune system and other areas than anyone has before, and, there’s the Ron Davis study as well. I think there’s reason to hope that we will see progress. I sincerely hope so.
Mary..I really want to thank you for taking time to write that response..I appreciate your feedback greatly, as do others..I can relate to so many things you describe..its kinda spooky 😉 Big Hugs
Can you not share the name of the virus you think initiated your illness. It may be helpful for some of us in finding a treatment that helps.
Glad you are recovering. Sorry you relapsed….scary.
Thanks.
Hey Sheb..one of the enterovirus 🙂
Hi Mike
Sorry to hear that this has happened to you.
On the Phoenix Rising forum, @zzz, after curing himself of ME/CFS using isosorbide dinitrate, and then being free of ME/CFS for nearly 8 years, he also had a major relapse from a very minor surgery. You can read his story here:
http://forums.phoenixrising.me/index.php?threads/how-many-people-have-been-ill-with-cfs-me-for-over-20-years.29818/page-6#post-474225
In @zzz’s case, no general anesthetic was used, just a local anesthetic of lidocaine.
By the way, what was the name of the general anesthetic that was used in your surgery? I wonder whether it was the anesthetic or the minor tissue injury caused by surgery that triggered the relapse.
Mike
Your wonderful explanation of symptoms, onset and outcome were of immense help to me. It seemed I became ill after dental surgery. Skin grafted from one area to another. I ended up with EBV (Chronic Epstein Barr) virus, again. I had that at 19…recovered in 6 weeks. This time I was 34 years old. Severe sudden onset, severe pain in body, sensitivity to light, sound and inability to concentrate to 9read.
Found a great Infectious Disease doctor. Slowly, agonganolizing slowly started to recover some. Testing found I had Lyme Disease. Hmmmm. Found Dr very knowledgable in treatin this hot potato! I can drive some now, still have oain and sister, no one in family had Alzheimer’s,has it at a young age. She always use to use flea bombs over and over in her home. It frightened me having taken enviornmental chemistry in college, I worried she was constantly taking in toxins. I received treatment for Lyme, one year I.V. Rocephin….but still ill, grateful however, for treatment as I def. Improved and could do more than previously.
CFIDS or Lyme which do I have. We had a support group, our youngest member was 10 in a wheel chair. Thin, frail missing school. Her school mates came down w it, she did not boune back. In adulthood she is okay now and is a nurse.
I still pay if I over do and do have horrible pain with the disease and neuropathy.
Researchers need to see and hear from real people how difficult this is. What do we share in common? My sister has early Alzheimer’s. No one in my family had it. My husband and I help care for her. Now my brother 58 has poor heart function. My famly was long lived well into 80’s mom drove to bank, church and grocery at 89.
Thank you,
‘Dwina
Dwina, incredible, thank you for sharing that
Thank you..will take a look..I believe propofol was used..I think the overall stress of surgery on my body made me crash.
Thanks Hip!
Thank you for your story Mike. I have had a relapsing remitting form of ME for over 37 years. I became acutely ill while nursing children in 1978 and was diagnosed with a coxsackie B infection. Progressively over six months I was unable to move and had many neurological symptoms. Back then it simply was not diagnosed and it was 10 years before I was diagnosed with ME by a neurologist here in Melbourne Australia who was studying loss of muscular function in ME. I do not call this illness CFS as I believe it is a form of atypical polio as recently discussed at a post polio convention. Someone else has mentioned this and it is believed that their may be a number of enteroviruses causing this post vaccination. My interet came as I read about hosptial staff and clusters of people who became ill without paralysis while nursing or living in areas of polio outbreaks prior to and after the salk vaccine was introduced.
My next point involves anaesthesia too and a minot proceedure that left me with gross muscle weakeness and subsequent severe relapse after a long recovery of over six years. At that point I had been able to return to my profession of nursing but unfortunately post surgery was forced on to a Disability pension. Slowly I have recovered again with less freqeunt relapses and a complete change to country living. My specialist is at the cutting edge of treaing ME/CFS here in Melbourne Australia and I feel fortunate to have been his patient for over 17 years now. Good luck Mike!
Maggie I think your right on!
Thanks Mike for the very clear and interesting documentation of your experience with this debilitating disease. I am so impressed with the verbal acumen but I must admit I started to shake reading about your transition mark around year 10. I am in my 12th year now and so many of the changes you mentioned I have been experiencing and because the slide into new improved (pardon the facetiousness) symptoms were just there and I never know how much to attribute to what (having major thyroid changes) it is very helpful to read of someone else’s experience because this change has be scary.
Thanks as always to Cort for this incredible resource for all of us who struggle.
Margo! Im glad you can relate! Do not be scared though! Know all this scary neuro stuff can completely go away and it will once you push the right buttons..if there is anything I can do please let me know. 🙂
Mike what a wonder you are! I hope you do appreciate that as we all do for the information and hope you have provided. One thing is clear to me from your story and all the responses it seems we must each find our own “right buttons”. I heard or read somewhere about a woman who some years ago went to a talk. One of the speakers was Dr. Bruce Carruthers, the doc who was one of the major contributers to the Canadian Criteria for ME diagnosis. He said you have to be your own doctor. We can sometimes get help and guidance but a lot of this roe we have to hoe on our own at least that has been my experience. So bless you for your offer of help, I really do appreciate it.
Margo yes! We do have to be our own doctors and advocates..thats what makes this site so special. We all can share our experiences and learn from eachother.
I really appreciate your kind words..I am very confident as we move forward there will be many more options treatment wise that we can all benefit from.
OMG! I got brain fog just trying to read and absorb Mike’s very LONG story!! I can’t even imagine writing something that detailed, so thought out and descriptive (I think those all mean the same thing, LOL!). Mike, you were blessed with a well deserved recovery, after having suffered so much, but to be hit again almost as severely, well, that was truly sad. Five seems to be your number! All the best to you as you continue with your second recovery. I’ve considered “Gosh, what if I ever need to have surgery?” I had major surgery way back in 1980 for a gallbladder removal (before the much simpler procedure they do now) with general anesthesia. I was young then, and healthy. But when I compare how I felt after that surgery to how I felt when I came down with acute ME/CFS in 1997, it was quite similar. Even when I was “healthy” it took me some months to recover from the anesthesia and surgery. My most heartfelt best wishes for us all as we each go on our own unique journeys. I was watching a Star Trek program today and thought how fabulous it would be to have that medical technology now (not the tricorder because there is one waiting for FDA approval, but the other things that regenerate the body and speed healing).
Judith thanks for taking time to read it! I appreciate it and btw Im a big star trek fan ;)!
I want to thank everyone for the very heartfelt comments, please keep them coming. I wish I could reply to everyone. Sharing my experience is intended to help us all identify with what we are dealing with in having this terrible disease. I hope I can inspire people to believe and know this can get better, against all odds. I know much of this disease path is reversible, saying this from my experience, Mary’s and others. Don’t ever give up and know that we have an incredibly supportive community here!
Mike I just read your original story and what an absolute nightmare! When your doctor and family friend even treated you like he did it was especially heartbreaking to me. I really don’t think the viral loads per se could be a problem since many healthy people have them?
Wow I can really relate to many of these comments. I do think viral load and as Lisa mentioned earlier toxins play a big role. I feel like mold mercury and other toxins can cause extreme havoc, not only when were sick but possibly play a role in who developes cfs and not. I think toxic load can also be passed down through our parents. I don’t know for sure..Im going off of instincts and observations as many of us have to do. I also feel like we don’t have to detox, I mean a forced type of detox. I think forcing detox can actually be harmful for us..In a weird way I think if we find ways to heal or modulate our immune system, our bodies begin to rid toxins in a more normal manner and toxic burden becomes less of an issue.
Mike, thank you for sharing your story. I’m so sorry you’re experiencing a relapse now and sincerely hope you are able to continue to pull out of it in a shorter time frame this time. I was diagnosed with mono in January of 1986 (winter!) which either turned into or turned out to be ME/CFS which I continue to have three decades later. I have never been totally bedridden for an extended period of time and, compared to many others with this illness, have remained functional although not anywhere near the level I was before I became ill. Surgery and general anesthesia (even dental anesthesia) have caused relapses in many patients I know. I underwent three surgeries for breast cancer in 2013 and I firmly believe that following strict protocols prevented me from having a major relapse. I wrote about the precautions I took in Health Rising at https://www.healthrising.org/forums/resources/surviving-surgery-with-me-cfs-and-fm-pats-story.124/ I continue to recommend the same protocols today to any ME/CFS and/or FM patients facing surgery.
Thank you! I’m going to take a look..I know your insight will be beneficial for so many of us! I had never thought surgery could have such a dramatic affect!
Thanks Pat for making the task easier. After Mikes story, I was thinking I needed to prepare all of that. One other thing that Dr Teitlebaum recommends prior to surgery is low dose 10 mg of cortef
I’d like to echo Pat about the recommended cautions for surgery, and perhaps alleviate well warranted anxiety about this for some who must go through a procedure in the future. I was concerned about anesthesia needed for colonoscopy, endoscopy, and then most recently for sinus surgery. I brought the Cheney and Lapp letters to my doctors for pre-op appointments as well as to the anesthesiologists the day-of. My husband was along as my advocate–someone we all need to have with us on these important days to be able to know our concerns and read the situation for us when we may not be able to do so for ourselves.
Additionally, when I had to go through Admission for the sinus surgery (though it was out-patient; I think they take the precaution of admitting in case they actually have to), and discussed my concerns not just about the upcoming surgery but in the event of ever having to come to the ER (again), the smart woman working in Admissions figured out that she could put the Lapp and Cheney letters into my permanent file where the Advanced Care Directive would usually go. Yes, I know an actual ACD is important, but staying alive is more important right now! I feel quite relieved to know my local hospital has this. I carry hard copies in my purse along with lists of all of my drugs and supplements, allergies and sensitivities, doctors, and my diagnosis physicians and dates for ME and concomitant conditions.
Also, the anesthesiologists for the different procedures were very thoughtful, reading through all of my lists as well as the Lapp and Cheney letters carefully with me. Other specialists may be dismissive of our ME/CFS, but anesthesiologists won’t be; they want to be sure to understand individuals’ often divergent responses to medicines and doses. Unusual and delayed allergic reactions to meds are common for me/us, and it seems that the biggest cautions from Lapp and Cheney are about anesthesia that induces mast cells to release histamines. The most recent anesthesiologist commented that most of what is included in those letters is now common practice, that the drugs cautioned against are not really used anymore, so I’ve been thinking our community might identify an appropriate MD to give an updated version.
In the last two procedures the main anesthetic has been propofol, and I’ve done well with it. I’ve had a bit more recovery time than people who are otherwise healthy, but I have not experienced what Mike and others have reported here. I am so very sorry for how these events precipitated terrible relapses for others and don’t mean to question their cautions. We are all different in how we respond to things, and we must all be our own best doctors.
I’ve been having weekly IV-saline infusions for 18 months so I think having better blood volume is helpful for surgery. Bringing information about that to all of the doctors, too, helped to ensure that additional IV-saline would be part of my procedure.
I am grateful for my good experiences, especially so because I need to have follow-up colonoscopies every two years. Many of the viruses that can instigate ME have been connected to cancers. I write all this in hopes that someone will not put off some important screenings because of fear of anesthesia.
Also–Mike, thank you for sharing your story. I really like your perspective of CFS becoming ME like HIV can turn into AIDS. I hope that targeted anti-virals will be developed for a wide variety of SOB’s. (By the way, I will steal your witty nomenclature! And give you credit of course.) Since many viruses take up residence in our cell’s RNA, becoming re-made in successive generations of new cells, the timeline of seven years to most fully recover might be possible when we have those targeted anti-viral drugs, for it takes seven years for the cells of the body to be completely new.
Hey Mike,
Thanks for describing in depth some of your experiences. I initially felt sad about you relapsing so severely, but so happy to hear you’ve recovered most, if not all of what you lost after your surgery. Congratulations on your recovery–a second time around. So much ground covered in your story and in the numerous excellent comments. Thought I’d share a few thoughts that may or may not be relevant to your story.
Some of my over-arching thoughts about ME/CFS for quite some time is that whatever affects the immune system, affects the brain, and whatever affects the brain, affects the immune system. I think this is why so many people have overlapping ME/CFS symptoms, even though what triggers them seems to vary considerably, from mold exposures, toxic exposures, pathogenic exposures, etc.
More recently, I’ve added a new perspective to my above take on the brain and the immune system. I’ve now come to believe (based on my own experiences) that whatever affects the eyes, affects the brain and immune system, and vice versa. My own understanding is that the whites of our eyes are actually part of the dura mater (Latin for “tough mother”) that surrounds and protects the entire brain and spinal cord.
I’ve noticed throughout my life, that even the most minor scratch or irritation to an eye can significantly affect how I feel, with neurological dissonance of all kinds showing up. So I can’t help but wonder if your “minor” eye surgery was experienced by your brain and neurological system as a major trauma. And ended up causing your somewhat of a temporary collapse.
Interestingly, I started doing eyewashes (with a variety of ingredients) last year, and noticed immediately they seemed to give my brain and nervous system a gentle stimulation, which supported my overall cognitive function and sense of well being. It works for me almost like a pick-me-up similar to a cup of weak coffee, but without the edginess that coffee can bring on.
Anyway, thought I’d throw this into the mix. If I would make a suggestion as you continue to recover from your latest relapse, it would be to do everything you can to take care of your eyes. I’ve gotten to the point where I do eyewashes almost as often as I brush my teeth. And my eyes really appreciate it! ?
Wayne! Whats up! So yea I totally agree with the brain/immune connection etc..definitely feels like they hugely influence eachother..always wonder which one may come first as the driving force..immune or nervous system..hmmmm
Anyways what is this magic eye wash you’ve come up with? As I do agree about the eyes!!
Thank you so much for sharing your story, Mike!
I am so glad that you are feeling back to where you were before your surgery.
And thank you for emphasizing that patients’ families and friends should just believe them, even when their needs are unusual.
Hey there! Your very welcome..it takes a lot of courage for friends and family to stick it out when everyone else advises otherwise..I truly believe it can be the difference in whether a patient gets through or not..I lost most of my support but a few special people sticking by my side has made the difference
Hi Mike, Whew! I read this first with panic that you had relapsed and were still stuck, then with relief when I learned the Doc’s treatments helped you to heal from the relapse in 5 short weeks! That is amazing, and also inspiring. What’s inspiring is the amazing strength of your body to shift with your determination, patience, and trust and Doc’s belief in you and his abilities.
It’s always taken me 5-6 years to recover from each of my relapses. After each of those 2 big relapses I never got back to my pre-relapse baseline, although finally after 4 years of doing mold avoidance and 2.5 years on my current dietary program, my brain has finally recovered enough to get back to research and writing projects (as I result of which I miss a lot of stuff on FB and never get to any other sites these days.)
Thanks also for all your insights on the illness and things mixed up with it. I generally find that most docs mix up ME/CFS with the other issues and offer detox or some similar BS
Janis, thank you and great to hear from you! Your proof that a percentage of patients get well with mold avoidance!
I’m really glad your well enough to write and follow your passions now!!
Miss you and please get in touch anytime to catch up!
NID/ME with friends, family and financial supports is survivable compared to those without these blessings. It is almost a completely different disease for those who during early childhood have developed a chronic state involving neurological challenges/PTSD from environmental toxins, vaccine injuries, etc. Add to that impoverishment due to lack of adequate disability benefits plus the previously mentioned financial and human support systems: This catastrophe has to be lived to be understood even by NID/ME experts. To survive and be of service while “living” in these depths requires extreme spiritual and creative passion so intense it can scare and alienate those who witness the experiencer’s daily struggle to survive. This frequently relapsing fragility requires a constant supportive lifeline to Source even when none is sensed or apparent. This conundrum easily drives the scientism-oriented atheist into turf way beyond logic; it did for this one and actually has proven beneficial to me and others. This experience can never be measured by logic, but the now equally valid research method of Heuristics is a gold mine of validation and inspiration for any who have lived within these “outsider” parameters.
Beca! Wow that was really well said and right on!! I wish I could express my thoughts as well as you!! Thank you!!
Really enjoyed reading your story Mike and I hope you continue to improve and get back on track. I was diagnosed with FM in 1992 and with CFS a few years after that. My spine issues took another decade at least to start. I have recovered from the FM and CFS and the spine is a lot better, but can still have tingling and burning problems. I had some minor surgery for skin cancer five days ago and have noticed my energy is not as great while I’m recovering from that.
Jody…Thank you..It really is amazing how it feels as though the spinal cord is being attacked by a virus as the disease progresses. As you noted, it can heal but I too have some lingering issues as well…Takes time. And please continue to rest after your surgery..B12 Complex and Magnesium has really helped me. Thanks Again for chiming in.
Can relate to your experiences incl. severe weight loss at lowest point. And add me to your summer/fall onset count. Perhaps researchers will read your excellent description of this disease and review Drs. Lapp & Cheney’s anesthesia guidelines for clues: http://www.njmecfsa.org/anesthesia/. So sorry to hear about your relapse then glad to read further along in this outstanding blog about your second recovery.
Gemini thank you! Glad you posted that link as others have posted additional links as well.
I think the virus, Well the SOB virus definitely triggers the disease in the summer/fall. Thinking that really eliminates other virus’ that can be responsible 😉 Thanks Again!
Mike,
I am thinking that it is possible that your brain had to adjust to an ‘eye reset.’ The craniosacral / SacroOccipital practitioners discuss how the body will do ‘anything’ to level the eyes. If you had one eye being pulled to the side, this is important. This is common in Chiari type folks. I share the black dots and other eye phenomenon that you mention. Also, an inside room can appear greenish after being outside in bright light. I have had thus 18 years. Would talk more.
I got bumped off the site when the format changed. Can’t find my password. Can’t sit up at main computer long enough to sort through 200 plus emails.
Merida thank you for taking the time to comment, that is a really interesting subject matter and an issue that affects many of us!
On a good day when your well enough to sort through emails I hope you could post additional information and or send me an email and I’ll post a link. Thanks!
Mike- I’ve had CFS/ME for 25 years with acute onset in the Fall! I never knew about the Summer/Fall connection. Thanks to complimentary and alternative medicine I made a recovery of @85% (work, social but not able to exercise/exert) after being housebound for the first year of the illness. I did well for 15 years. Even had general anesthesia for the birth of my second child with no problems. Then had a major relapse- as sick as you described-for a few months before finding treatment. I’ve better now for @ 8 years but live with many limitations. Finding it that the disease is harder on the body as I get older. Anyone else find this too?
Hey Jocelyn! Awesome that you’ve found ways to combat this disease! Most days I can exercise without too much issue, I still have the days where I start exercise and I’m like whoa this aint gonna happen! For me working is the last frontier to conquer. Not sure why but working on a consistent basis wout issue is the hardest thing for me to do wout a setback. The constant mental exertion just seems to take a toll on me but hoping that gets better as well!
http://summit2016.foodrevolution.org/replays/
Since we’re talking about toxins, I really encourage anyone who has 45 minutes today to listen to Andrew Kimbrell on John and Ocean Robbin’s Food Revolution Summit. He talks fast and and it’s a great interview, although very sad, maddening, and discouraging. I think I first learned about this summit a few years ago on Health Rising – Cort might have posted it. Some interviews are more riveting than others but I think Andrew’s is so important. John Robbins is an excellent interviewer too. If any of you do join the summit (it’s free and you have a day to listen) the first day’s are available for a week since there was a snafu the first day and not everyone got them.
Betsy, Thanks again for posting that info! So many aspects we can focus on to get well!
Mike,
Me again. Important info. Eye problems can be related to TMJ dysfunction. From Chiropractic: The Anatomy and Physiology of SacroOcciptal technique: Pain behind eyes, bloodshot eyes, bulging eyes, sensitivity to light and visual disturbances can all be symptoms of TMJ problems. “Contracture of the external and internal pterygoid muscles will also affect the pterygoid plates and ultimately the position of the sphenoid bone affecting the superior orbital fissure through which cranial nerve 3, cranial nerve 4, the ophthalmic division of cranial nerve 5 and cranial nerve 6 all travel; the optic foramen through which the optic nerve travels, the optic chasm a and the sella turcica in which pituitary is located. ” page 363
I appreciate that this is complex structural information. That is why it is so poorly understood by most. the immense importance of understanding the interrelated function of the nervous system and musculoskeletal system has remained mysterious and incomprehensible to most – except the expert SOT chiropractors and traditional osteopaths.
Distortions of the jaw can be caused by physical trauma – birth injury, blow to jaw, whiplash, incorrect orthodontic procedures, loss of teeth, pelvic distortion and instability. The SOT experts do not mention scoliosis, but I have come to suspect that even mild ( not officially diagnosed) cases are important in causing these various distortions.
If you have access to a traditional, cranial osteopath or Sacro-occipital chiropractor, they are the ones to illuminate the mysteries.
Really want to talk. Maybe I can get things straightened out tomorrow or next day – ie back in forums, etc.
Merida great info, highlights the importance of finding a great practitioner, as they are not all created equal ;)!
For me, I’ve benefited from..Chiro, DO, acupuncturist and a few other alternative health practitioners!
Why does Lyme Disease receive concern and attention and CFS gets nothing? It has to be the stupid name: who isn’t tired all the time in this day and age.
But Lyme Disease is mysterious and opaque. The name doesn’t direct the hearer’s attention to a simple answer, so people are able to see how devastating this disease is.
I’m afraid that CFS will remain forever in the shadows. Its sufferers, too. The only hope is to awaken the indignation of the media. We need a celebrity or someone among us who can become a celebrity.
Lyme disease is getting $25 million/ year in funding -about 5x’s what ME/CFS is and probably much less than it should be getting.
Have hope though! Collins has said he is behind ME/CFS and hopefully we’ll see more dollars soon. Stay tuned!
I agree…it is frustrating! Not to take away from Lyme sufferers as it is a terrible disease but come on!
Maybe because our disease is harder to classify as a singular disease instead of a mixed bag of syndromes always being implied? Arg
Hi Mike, Thanks for your story. Odd that you had a 4 day delay in the bulk onset of your symptoms because I had a 4 day delay as well, do you know why that is? Also, I’ve seen you comment on a potentially CFS treatment that involves hydrazine sulfate. I believe my symptoms started after exposure to hydrazine by inhalation, do you have any idea why that might be and if there’s anything I can do to treat this? I think I present with POTS/CFS symptoms but no sign of autoimmune problems outside of CellTrend testing. Thank you
So wait…what kind of treatment did you do? Thanks!
I spoke to mike on facebook messenger and he told me nothing he had worked for treatment and emotional healing was the only answer. He said emotional healing is the only way to recover from cfs/me lyme etc but i read so many things about him moving out mold apartment. When i asked him about this he then blocked me no idea why
Interesting. I haven’t heard from Mike in years…
Ive read reports his story is a scam?
Not true at all. I know Mike personally. For some unknown reason some lunatic on the web targeted him. Why anyone would want to do that I don’t know. Another reason not to trust unsubstantiated stuff put on the web.