Dan Neuffer had a severe case of ME/CFS/FM but after extensively researching the illness, Dan came up with his own protocol and eventually fully recovered. Since then Dan has produced a website, and a book, and offers a coaching program that seeks to assist others to find their own pathway to recovery.
Dan is recovered but this time a series of mistakes he attributed to his aversion to doctors and his tendency to self-diagnose – two possible consequences of ME/CFS/FM – almost cost him his life. Thanks to Dan for allowing Health Rising to reprint his blog
Lessons From my Life-Saving Surgery That Might Save Your Life!
PERSPECTIVE:
Life with chronic illness can be challenging to say the least. Not only do chronically ill people have the normal challenges that everyone has in life, but they are amplified as your capacity to deal with them diminishes.
Of course there are lots of additional challenges for a chronically ill person, and as time passes, the way we deal with all these inevitably changes. These changes in our decision making process are not just problematic, but they can be potentially life threatening. What is so surprising to me, is that I am still dealing with these changes after having experienced seven years of chronic illness, even though I have been fully well for over eight years now.
What is so surprising to me, is that I still fall into the very trap that I advise people every day to avoid. Looking back, I feel a little silly. I feel a little embarrassed, but I am going to share it all with you anyway and hope you can understand how and why it happened.
Last month was perhaps the second or third time when this impact of years of chronic illness and consequent changes in my decision making, seriously risked my life –
“it could have happened at any moment, the chances of survival would have been 50%”.
I recently joined the chronic illness bloggers network. People blog for all kinds of reasons, but I started writing to help others and to inform. For me blogging is a way to reflect on my experience, to learn from it and to share those learnings with others.
It seems that I have been a little slow in learning this life lesson, so my hope is that by sharing it with you, that you will get there much quicker. So rather than just ‘telling you’ the lesson, I will share my experiences in a bit more depth.
Ask yourself; how do you progress from moment to moment and make your decisions?
How could I make this crazy mistake that could easily have cost me my life?
WHEN IT ALL STARTED:
My “how the heck” moment actually started around two years ago. The kids had a pretty nasty stomach bug and eventually I got sick also. After three or four days of little food and lots of diarrhoea, I finally turned a corner. I had been eating normal (albeit plain) meals for about a day and treated myself to a banana and a generous piece of dark chocolate.
So I was surprised to suddenly experience gut pain that I judged to be constipation.
I ate some fibrous food with the hope it would pass, but the pain worsened. However, it was in the evening and I wasn’t inclined to seek a Doctor.
Dan’s negative experiences with doctors when he had ME/CFS/FM left him understandable wary about seeing them again. That reluctance and an attempt to self-diagnose, however, almost cost him his life.
If you have been ill for a while, perhaps you can understand me. During my 7 years of illness, I had what seemed like several lifetimes worth of doctors’ appointments and treatments. Somewhere along the way, I had become a reluctant patient – a very reluctant patient.
But as the pain worsened, even at 9/10, I still hoped it would pass. Sometime after midnight, I finally relented as my pain levels hit a 10/10 (I think it was actually more like a 11/10 as I felt I had hit 10 a little earlier) My wife took me to the local hospital.
I will summarise my experience to say that the final diagnosis was constipation. They did the physical test for appendicitis and also bloods which showed no infection and also took an x-ray to check for a bowel obstruction. None of it including further physical examination showed any real issue, but I was in absolute pain and distress.
What upset me about the experience was how degrading it was. The pain had gone so high that I was completely unable to cope. Vocalising this in the hospital and in front of my wife was one of the most degrading things I had experienced. I am not saying that as a man, I should manage to be completely stoic in the face of such severe pain, but I was ashamed at going to pieces like that.
What made it all worse was that I felt largely ignored despite the severity of my pain in the hospital. I felt like I wasn’t believed, like the tests and diagnosis didn’t justify my level of pain. Eventually a hand unceremoniously plonked a small plastic cup containing 2 or 3 pills in front of my face onto a small tray, but by this stage, I was in such a state, that I was unable to take the pills on my own. So they sat on this little table for over an hour until my wife was able to be by my side!
Eventually, the next day I was given laxatives and eventually the pain started to ease.
Was I happy to finally be rid of the pain? Sure.
Was I happy to be finally discharged from hospital? Absolutely.
If I had my time again, would I have gone to hospital again? Absolutely NOT!
If I was a reluctant patient before the experience, I was RESOLUTELY reluctant afterwards! My thinking was, unless I have a problem that needs a thread and needle, I am never going back to hospital!
Fast forward 2 years
Two years after that experience, my resolve not to return to the hospital was finally tested again. Remember my experience, my reluctance – let’s have a close look at my decision making process:
- Friday afternoon: Mild pain in my abdomen started niggling at me. I had just had a treatment for my back that has been a bit troublesome and thought it might be referred pain somehow – I ignored it.
- Saturday morning: The discomfort was more pronounced. I wondered if I might be constipated again, so I was mindful of my diet. (no bananas and chocolate this time)
- Saturday afternoon: The pain had escalated – I was really feeling uncomfortable. I couldn’t understand why this was happening, I hadn’t really eaten anything unusual, nor had I had any stomach/gut issues recently. I ate with the sole purpose of relieving the issue and tried to relax with the expectation it would pass shortly.
- Saturday 7pm: Things had worsened again, I was still hoping for it to pass and started to eat prunes now.
- Saturday 9pm: Things had worsened again, I was still hoping for it to pass but pain was at a 7 or 8 now – it was over my threshold and the pain was driving me to take more action. I found some laxatives from a couple of years before and started taking them – surely I would get relief and the pain would ease soon.
- Saturday 10-11pm: My pain tolerance is really diminishing – I am starting to question my judgement of whether the pain is getting worse or whether I am simply not coping so well any more. One thing is for certain, this is EXACTLY the same experience as 2 years previously – I am doubling up on laxatives!
- Saturday Midnight: My pain is now at what I think is 10/10, I have started vomiting, not due to any nausea, but as a response to the waves of pain. My wife is urging me to go to hospital, but I insist that I don’t want to go given my previous negative experience and lack of any support or treatment beyond the laxatives they gave me. I can take laxatives myself at home, so I don’t see the point – I don’t see what else they will do to resolve the constipation.
- Sunday around 1 am: I am on my own in the bathroom when I ‘pass out’ for the first time. I don’t actually fully pass out, it’s like I am passed out but I am still awake – my body goes limp, my breathing normalises and for a short time, the pain doesn’t seem to reach me – until I become fully conscious again. I am feeling desperate now and my judgement is seriously impaired – I manage to rouse myself to get off the floor and go for the medicine cupboard to take ‘additional constipation pills’. My wife intervenes and gets on the phone to a nurse, the pills I was trying to take stimulate peristalsis, not a good idea whilst still constipated. My wife again talks to me about going to hospital – I point out that beyond laxatives, the hospital had nothing to offer for this problem last time. I have a bowel movement – I get no relief.
A shift in my decision making paradigm!
Dan held out until the very last moment before he went to the hospital again
Sunday some time after 2 am:
My pain is now at a “13/10” – my frame of reference is shifting. Whenever the pain peaks, I am oscillating between that 95% unconscious state and vomiting. I am still refusing to go to the hospital – “THERE IS NOTHING THEY CAN DO TO HELP ME!!” I am angry. I am uncertain. I hate being pushed to go back to the hospital, I don’t want to go! There is no point! I just have to get through this. I have periods of hyperventilating and I am not coping at all. The pain is now so bad that I am shaking and getting pain in my chest. The distress is so severe that I consider the serious possibility of having a heart attack.
NOTE: As I type this, I cannot help but wonder what kind of person could be telling this story – I cannot relate to this person – it seems like insane behaviour. However, my previous experience of being in the same pain and distress without any assistance is forming my view that it is pointless to go to hospital.
Suddenly I feel a shift in my outlook, I realise that just dealing with it, waiting for the problem to resolve isn’t enough. I realise that regardless of what happens with the “constipation”, if I don’t get help to get the pain under control, I could have an even more serious problem.
I stand up and leave the bathroom and start stumbling towards the car. My wife asks me what I am doing – I say only one word “Hospital”.
It’s nearly 3am on a Sunday morning – potentially a peak time in Accident and Emergency. Will I get seen to? My wife investigates which hospital has the shortest waiting time and we head straight there.
I absolutely cannot cope. My wife tries to talk to me in the back seat, but I am unresponsive semi-conscious one moment, vomiting the next.
What really happened!
Without giving you a blow by blow account, let me summarise what happened next. Just like last time, the physical test wasn’t convincing that it’s appendicitis. Just like last time, the blood test comes back negative – no signs of infection.
Instead of an x-ray, they want to do a CT scan and advise me of the cost. They have given me morphine and I am temporarily managing with the pain and say I will consider it – do I really need it? I ask “shouldn’t I be taking more laxatives?”
Three minutes later, the morphine wears off and I am back to 10/10 pain (I am confused and shocked but my wife confirms I have been given morphine) – I immediately approve the scan.
Shortly after the scan, the doctor tells me that the scan shows that my appendix is inflamed and that they have called a surgeon who is coming to the hospital. The doctor tells the nurse to give me as much morphine as I need.
Sometime later I meet the surgeon who explains that the scan appears to indicate a tumour in my appendix. He has to be very careful when operating because if not removed intact it could spread to grow in other parts of my body. The surgeon gave me a high degree of confidence that he would do his best.
The next day after the surgery when I meet the surgeon I am feeling much much better. He tells me that the operation went great, my appendix had quadrupled in size and was ready to burst any second. If it had burst, my chances of survival would have been 50%. He explained that it smelled horrible, but that there was no tumour.
We only speak a few short minutes, but as I explained to him my experience leading up to the operation and that it was just like my constipation 2 years ago he scoffs. When I question him he tells me that constipation doesn’t create that kind of pain. I suddenly wonder what really happened 2 years earlier!
Not only had my appendix quadrupled in size, but the inflammation had spread to all my surrounding tissues. The biopsy even revealed that the appendix had necrosis, the tissue was actually dead – short of it actually bursting, I imagine it doesn’t get much worse than this.
The real lesson for chronically ill people
OK, so what is the learning for me here? What is the learning for you given that this experience is actually by a person (me) who is no longer chronically ill?
Perhaps you read this and think me mad for not going sooner (you are right!) Perhaps you have also developed an adversity for going to doctors/hospitals based on negative experiences and saw my perceived logic that there was no point in going when there was no treatment/benefit to be had.
The real problem here was twofold:
- I allowed my previous upsetting hospital experience (& 7 years of doctor/treatment visits and frustration whilst I was chronically ill) to make me unreasonably stubborn and treatment resistant.
- I self-diagnosed when I am not a medical doctor nor had the benefit of any test results and only my own personal limited experience with constipation/appendicitis. I used the fact that my experience was identical to 2 years previous as an absolute of what was happening.
I hope that by me sharing my experience, you recognise the dangers of becoming complacent, self-diagnosing or being overly reluctant to engage in medical help.
I hope you realise the danger of automatically attributing all your current symptoms in the face of some new ones as ‘just another flare up’ (as I had done during my years of illness when I had severe food poisoning that eventually landed me in the hospital 2 weeks later).
Do you tend to self-diagnose? Attribute everything to ME/CFS/FM? Or has a history of negative ME/CFS/FM doctor’s appointments left you reluctant to see a doctor for other things?
People with chronic illness often speak of how they feel they ‘wear their doctor out’. Often the relationship gets strained or breaks down leaving patients frustrated. Perhaps you can imagine how frustrating it must be for doctors also, or maybe not.
However, you might not realise how worn out you yourself have become when it comes to doctors’ appointments.
I understand how you might get sick of going to the doctor if you get no outcomes. In my experience, most people with ‘incurable chronic illness’ that have been sick for longer periods of time, seem to become disconnected from their GP – often stop seeing a doctor altogether.
But with the constant morphing of symptoms over time, this can be a very dangerous choice!
Whilst I can’t tell you whether the diagnosis of constipation two years previously was accurate or not, I can tell you with absolute certainty that my symptoms leading up to my appendix operation felt 100% identical. So I had based my decision on this, but I did not have constipation – I had appendicitis.
My decisions could very easily have led to me losing my life – my wife losing her husband and my children losing their father. I made a terrible mistake and I choose to take that lesson on board.
My hope is that if I am ever faced with a similar situation, that I will be a little less reluctant to seek help. My hope is that you will take the lesson on board also and that you will make the best choices for you and your family going forward.
What about YOU?
- Have you become reluctant or phobic about going to the doctor?
- Can you relate to my choices?
- How has my experience made you think about your choices going forward?
Please leave your comment below!
More About Dan
Dan Neuffer’s story with chronic fatigue syndrome (ME/CFS) / fibromyalgia began with an abrupt onset triggered by a vaccination. His symptoms ranged from extreme fatigue not alleviated by rest, bouts of fever and other flu-like symptoms, gastrointestinal symptoms as well as night sweats, cardiac symptoms, orthostatic hypotension, allodynia, excessive urination at night, salt cravings, pain and neurological symptoms such as fibro fog.
After fruitlessly seeing dozens of doctors, Dan took matters into his own hands and found a pathway to recovery. He believes that autonomic nervous system dysregulation plays a fundamental role in these illnesses and that a comprehensive treatment approach is critical; when he found the right treatment protocol, treatments that hadn’t worked for him before began to work.
Since Dan recovered he has written two books, CFS Unravelled and Discover Hopeand created an online recovery program for ME/CFS/Fibromyalgia called ANS REWIRE
Check out Dan’s Health Rising Blogs
Yes, I have done the same! I have absolutely been in excruciating pain but did not seek help because I figured I knew what it was, or I had been to the ER before for the same thing, and they couldn’t diagnose it. When I finally go to the ER or the internist for an acute problem, I really should have gone the day before. After years of going dutifully to doctors for not only my ME/CFS, but for other conditions, and generally getting no help (even for those other illnesses that are treatable), I found myself in a blood lab the other day, saying to myself, “I just can’t bear doing this anymore.” But the blood work I was getting was routine monitoring for a hereditary disease that I will eventually have to get treated for. I am hoping that I continue to get word in this next appointment that treatment isn’t necessary yet, because once I start, I will have to get treatments monthly for the rest of my life, and I just DO NOT want to go to another doctor or test or treatment ever again!
Thanks so much for sharing Dan. I hope nurses and doctors read this, not just patients. You should print and distribute it to hospitals and especially to Emergency Room nurses and doctors. But for us with ME-CFS it’s always the problem. How can you keep past experiences from coloring current and future experiences? We’re only human. Years of neglect turns a puppy into a sad dog. It does the same for humans. It changes future perspective and behavior. So the warning you gave is very important for us, but it’s also important for the medical staff to be aware what kind of impact they can have on their chronically ill patients. My last time in ER I noticed a guarded wording with the staff that was comforting. Give them at least that much respect.
May even of had this all along causing his original CFS illness & it got better then got worse I am surprised he tolerates Morphine with CFS if this is what he had all along most cannot tolerate Morphine at all
it almost killed me once I was told never to take this again…I had emergency Appendix removed the symptoms are similar to CFS so reading this post now I question a CFS diagnosis all along & No I am not
knocking him but his appendix could have been making him sick from day one…I got CFS decades after appendix emergency Surgery he may be fully Cured no not in any remission…I have also seen a CFS diagnosis
then they had insulinoma Tumor removed they are Cured & never had CFS…They also say 5% recover from CFS I doubt this is true I do not think anyone recovers from true CFS that is my thoughts…
I remember reading a comment on one of Dan’s YouTube clips that had me thinking the same, that maybe he didn’t have ME/CFS but an identical side effect from something else, there was a good reason for it too but I can’t it remember now. It was a good enough reason that I decided his recovery protocol wouldn’t work for my type of ME/CFS, which I suspect is auto immune.
(Note:I do think he is a genuine guy and he did have a subset of ME/CFS, just a different version to mine)
I have had ME/CFS /FM Since 94. At 1st I went in Neurontin for years. I didn’t want opiates. Finally I couldn’t take the pain and went on opiates. For this ME/CFS sufferer I am only in tolerate to Codeine. I do not take opiates regularly but do use them if I get into an intolerable state. Just sayin… Some of us do tolerate opiates.
Same… In fact I’m void of the CYP2D6 allee.
Anything synthetic does not work on me.
I wish I could get a ER to comprehend this .
I get placated by being given a IV with 3 medications that are toxic to me.
My fear of the hospital is I’ll be poisoned by being given more medicine I can’t metabolise.
I will remember this blog. I have also been to the hospital with pain and decided I wouldn’t do that again. Hopefully I can learn from your experience that every issue is different and make a smart decision about the need for treatment. Sometimes we defer to professional opinions when we really know something is badly wrong with our bodies.
Yes, the body is very complicated and doctors obviously get it wrong sometimes. On the patients side it often takes courage to keep diving back in there. I think we have to remember that our ME/CFS/FM experiences will not necessarily be repeated for other ailments.
Glad you took the lesson on board Kaye. One thing I often say to people is “what advice would you give someone else in your position?” – it really brings down the barriers.
This is so common for everyone who has gone through the humiliation of reaching out to doctors for help. We all know what happens.
I had to work diligently, push my doctors and go outside of my insurance to get the help that I needed. Having done that I am now able to work again which is amazing. I am not without pain, fatigue and brain fog, but they have diminished to the point that I’m able to live a life that is acceptable for me.
I’m happy which is probably the most important thing. I won’t say I’ve been “lucky” because I worked my butt off to get where I am. But I am lucky in the sense that the path I chose worked for me.
If anyone is interested in what I did to get my health back, to a degree, please let me know and I’m happy to share. Disclaimer, I do take a small dose of methadone daily, a very small dose. That took me only so far. Cort we briefly discussed me submitting my story to you. I’m still interested in doing that if there is a need for success stories.
Hi Lorraine, we definitely could use more recovery stories. I’ll be in touch and thanks for being willing to share.
Our recovery stories are posted here – https://www.healthrising.org/forums/recovery-stories/
Lorraine, I’m sure I’m not alone in wanting to learn your story. Thank you for being willing to help with sharing your journey.
Hi Lorraine/ Cort/ Dan & Team,
I’m I’m very interested in any recovery programs and story’s from fellow sufferers. I’ve suffer from ME/ CFS/ FM which was trauma induced post cancer in 2010 but looking back had undiagnosed ME/ CFS since I was a teenager when I suffered from Glandular Fever/ ME. The mainstream medical community (GP’s)in Australia are useless and generally have zero knowledge of up to date studies or information re these autoimmune dysfunctions & diseases. I been a guinea pig for all the usual pharmaceutical drugs that are the “ official” treatment and been told by various Drs it’s in my head or it will go away. My liver and health has suffered the horrible side effects of these horrible drugs making my flares, depression and general health so bad I’ve given up my business and now have my mum as my carer and live on a disability pension. Being not believed and a guinea pig has left my mental, physical and emotional health in tatters.
“I” reduced my cocktail of drugs down to lowest dose of OxyContin which is 10mg than to 5mg Targin and Valium as need for sleep and stress BUT highly rely on nutritional medicine and intergrative treatments to help control my daily battle of both chronic and acute pain. I’ve went through the battle to try CBD oil instead of taking opiates ( very costly & just doesn’t work as well as low dose opiates) When I had money I had regular nutritional IV treatments with Dr Sandra Cabot (Sydney) along with clean diet and natural anti inflammatory supplements plus bio identical hormones & peptide injections. All this cost money which on a pension makes it hard to control my disease & pain naturally. So you end up back on pharma drugs to control the pain, full body stiffness, brain fog. Im trying to find a dr that treats ME/CFS/FM with LDN ( Low Dose Naltrexone) near me and will bulk bill. LDN is off label but still not cheap here in Australia also not really known. I was given this treatment just after my first cancer and first major flare of excruciating pain and it worked but my treating Dr left to go to another state. So my roller coaster of Dr visits hell and pain truly started.
I’ve just been diagnosed with Bursitis in my right hip & My amazing chiropractor/ acupuncturist/ Kinesiologist/ herbalist/ naturapathic doctor Terry Power ( yes he’s qualified all in modalities) has just referred me to a local dr that specialises in mould infection CIRS because he thinks I might be suffering this instead of FM.
Bottom line, yesterday I went to my local ( 1 hrs drive away in Kempsey) GP ( replacement GP as MY sympathetic GP has been away due to family issues) to get my monthly script for painkillers and was told he wouldn’t script them as I QUOTE “ Only had chronic pain & shouldn’t need or be on them!” Well I just broke down and told him few home truths about my history and what I have suffered. His response was well I should discuss this with my Dr! Unbelievable lack of empathy and knowledge. I would love not to take any opiates as I also have a liver disease called Gilbert’s syndrome which is why I try to reduce as many chemicals and drugs as I can through my system.
I feel I’m at the end of my tether and desperate for help with LDN or other pain controlling options. I’ve exhausted most options.
Regards
Misha Heaton
Hi Misha, Dr Rosie Ross at Northside Health, Coffs Harbour is a GP plus Integrated Health practitioner and will prescribe LDN. I got it made up at Dorrigo pharmacy there is a compounding chemist, Brian,there. 100 caps for $40. I used LDN hoping to get help with pain for my ME/CFS and fibro with myofascial pain but no noticeable difference. Good luck and hang in there.
Hi Misha, I was diagnosed with hip bursitis after months of pain and nothing helped, steroid injections, etc. With some skepticism I then tried a trigger point self treatment from Clair Davies, the Trigger Point Therapy workbook, and it was like a miracle, in 3 or 4 days the pain was gone. I don’t know if it might help you but it might be worth a try, it’s just the cost of the book (get it used) and 5-10 minutes/day. You should know in a week or so if it’s helpful.
This is my first comment on health rising, so Thanks Cort for the great site!
All remission stories, even partly, are helpful not only to get our hopes up but also gives us a change to better understand what’s going on with this disease. So please feel free…
Hi I’m glad david recovered. I think we all need hope in our own way we need to find it. The problem with these kind of recoverys it does not really do us any good. I’ll explain why now. I have heard from so many people that they had cfs and now there better ceruycasualy. Ive heard my friend used to have that but its gone. We are still trying to get serious support from public and medical community. these storys dont help. I dont hear peopl saying oh I had ms and recovered or lou gerhigs disease ectbect. Or i had a friend eho had it for a while and now there better. I think this isnot in our best interest even though it may be said with right intention. we are not ready to talk about miracles unless there are tests that show improvement in real biomarkers. They need to show scientic improvement.Sorry for negativity but I think there will be less and more people who actualy have disease as soon as ron has test for biomarker. That said we need to discuss openly what we have as a whole group and discuss the tangible biomarers we show from cfs specialists. There is a group of biomarkers that can be used now for sure to get pretty good idea if we have disease. Thanks best to all
I
God bless you, Dan. Yes, I have definitely become reluctant to go to the doctor and I can completely relate to your story. Thanks for sharing as it is important for us to be open to the treatments doctors CAN DO. Even though we recognize there’s a lot they can’t. THANK YOU FOR YOUR STORY! And for your great books and interviews.
Thanks Jennifer – glad you are supported by the resources and recovery interviews! 🙂
is it in anyway possible to get information on what treatement he used?
I also think a driver in my desease is a autonomic nervuossystem out of track -but what to do? ???
Hi Grete
I have never harped on that much about exactly how I recovered because I think it is important to tailor our recovery journey. However, you can see my CFS/Fibromyalgia recovery story along with the others on my site.
I can’t tell you how many of my family members have had the pain you describe, have gone to the emergency roim only to be told nothing was found. My 12 year old nephew nearly died because his doctors denied appendicitis, yet hus appendix had ruptured 3 days earlier. Johs Hopkins Hospital saved his life. I am so glad you are okay. Apparently, appendicitis is difficult to diagnosis even with scans and labs!
I think you are right – it’s not straight forward at all and I don’t really blame the hospital for not making a diagnosis the first time (assuming it was appendicitis which I think it probably was). It would have been nice to be taken more seriously though, I don’t think they really took on board the level of pain that I was in. Glad your nephew was OK, when it ruptures you’re really dicing with death.
This is so similar to what happened when my mother (who is severely ill with ME/CFS) had appendicitis- except that she did go to the emergency room, several times, in complete agony- and they kept telling her it was in her head and sending her home!!! It was only when her appendix was about to burst and an older doctor diagnosed it (based on breath!) that they finally figured it out. No wonder we all get so jaded by the medical profession!! It doesn’t always seem to make a difference if we go for help or not…
Wow, that’s really taking the ‘it’s all in your head’ to a whole new level – shocking to hear! 🙁
Great story. Useful.
Who was Dan’s GI doctor who healed his gut. For so many people the GI pains are unmanageable. This seemed to be his first step. Who was this wonderful doctor. No luck on our end with this problem.
This doctor is no longer practicing, but it wasn’t really the ‘magic gut treatment’ that got me over the symptoms, it was really the combination of all the things I was doing. I had tried to rid myself of ramped candida infections before that using diet and maximum medication, but it had no effect and the levels were so high that it was actually in my blood!
I just looked at Dan’s first video. He basically exposes the myths the patient comes to live with.
But my questions is: has anyone here done Dan’s programme? Also, what does his programme consist of?
And I’m quite rattled thinking that here is a claim for health and yet thousands are lying prone and unable to get up.
I’m delighted he is well. Delighted others got well. But why are there so many sick people. And why is Dan’s programme not used by doctors if it seems to work.
I will try to look at other videos but any comment would be wonderful. Thank you
Honestly, while the best doctors are open minded some doctors can be the last ones to try new things. I’m about to post several of Dan’s clients recovery story to Health Rising. The program obviously works for some people. I’d bet dollars to donuts that it also doesn’t work for others. That’s just the nature of the beast that is ME/CFS/FM. The fact that he is able to get some people to recover is, however, quite an accomplishment for me.
The other thing that strikes me from reading this article is that appendicitis literally means inflammation of the appendix. 5 years ago, I was diagnosed with CKD (Chronic Kidney Disease), which is really just a shorter term for rampant inflammation of the kidneys. It has been thought by western docs for DECADES to be irreversible. While treating my inflammation with every natural substance that researchers are now showing success with for CKD, my GFR numbers have gone from 24 (20 and below equals dialysis) to where they are now at 68 (low normal). My teeth and gums are healthier and the joint pain I’ve lived with is nearly gone. My point is, ME/CFS has a very significant SYSTEMIC inflammatory component (according to various ME/CFS researchers, including both Ron and Mark Davis). Please don’t forget to take excellent care of your microbiomes AND do whatever else you can to keep systemic inflammation under control. Abstaining from sugar (and salt, as much as possible) are VERY good places to begin. And various ME/CFS Probiotics help tremendously with all but eliminating these cravings. I’ve found liquid Stevia/unsweetened dark chocolate to be a very tasty substitute treat). Best wishes to you all!
It seems to me it is the diagnostic failure of the appendicitis at the first hospital, which made Dan’s experience so complicated. As an CFS/ME person of 20 years, I am
terrified of going to hospital; I have Multiple Chemical Sensitivity, and would be in
real trouble in that environment, plus my reaction to EMF’s. Also the inability to take
what I know helps me while I would be in the hospital, which is mainly natural, only one pharmaceutical to assist inflammation on brain nerve endings; all these products are
not allowed in hospital, and they start from scratch; lastly, the food, I would not survive.
Ditto to that as I have MCS too and there are many drugs I cannot tolerate, let alone perfume, body products or flowers. One time in the hospital E.R. with severe vomiting and diarrhoea, they put me in a cubicle with an attached toilet that had just been cleaned with hospital bleach. I couldn’t breathe and they had to move me elsewhere, but after 12 hours of vomiting and diarrhoea at home, the anti-emetic and anti-nausea medication actually took effect and I had no more diarrhoea anyway.
Vicki, you sure are brave….. I am MCS to so many products which would used in hospital, probably to the sheets in the Ambulance, can’t
tolerate any pharmaceuticals, and would be lost without my home regime, which takes me all day to get through….. I often think I’m having a heart
attack as well, but have no proof that my heart is in a bad condition as
my practitioner says I’m too weak and sensitive to get a test. Ho hum.
The internet has been invaluable and also scary for me. I wish you well,
I know there is a role for doctors and hospitals and they save lives, but
making that choice to go is difficult, because they are not informed
regarding CFS/ME/MCS, in Australia at least.
I called an ambulance with a similar experience in 2014 and the local (large) hospital E.R. did a scan and said nothing was wrong and it was probably diverticulitis. They sent me home several hours later.
Within 4 days, my stomach was enormous because I kept drinking water, worrying about dehydration (but barely eating). On the 5th day, I called an ambulance again (I am single and live on my own) and was close to passing out with pain.
I knew something was drastically wrong. As a chronic illness/pain sufferer since 1980 I am totally in tune with my body and know pretty well what’s serious or urgent and what’s not.
This time the E.R. doctor did an U/sound with contrast and found the bowel blockage. 5 days in hospital being re-hydrated and catheterised and the blockage passed (just before they were about to operate) and finally they let me go home with the promise that I would return immediately (if I had the slightest pain or concerns). I only lived about 6 minutes ambulance ride from the hospital then and that’s the only reason they let me go home.
When I got home and looked up bowel blockage on the internet, I discovered that some 38% of people with a bowel blockage die because they didn’t seek help early enough.
I’ve had many trips to the hospital E.R. department in the middle of the night (and some day trips) in excruciating pain OR severe gastro, but other times I usually give it 4-5 hours before seeking medical attention.
I have an inherited heart condition too.
One of these days I’ll probably have a real heart attack (and die ?) because I’m thinking it’s just another severe FM episode and I should wait 4 hours.
Thanks for sharing your story and for offering a good reminder .
I generally attribute all of my symptoms, no matter how severe, to ME/CFS.
They are so wide-ranging in terms of parts of my body and apparent organ systems affected, that my assumption is that no other illness could cause this many problems. I have never heard of any other illness, even late stage metastatic cancer, that results in such wide-ranging symptoms and pain.
Another reason I write off the symptom to ME/CFS it that it often dissipates or disappears after a while and then returns only intermittently, replaced by some other set of symptoms. And, like you, I don’t want to spend hours upon hours or the money on doctor’s visits.
I have been down that road, going to ENTs for chronic hoarseness, other ENT’s for chronic sinus infections, gastroenterologists for abdominal pain, occasional weight loss, and/or diarrhea, allergists for skin reactions to foods, a urologists for pain during urination, etc. They generally seem skeptical, enter a trance-like state when I tell them that I have had CFS since 1998, and then sometimes recommend some test.
Since getting sick after a viral onset in 1998, I have had 6 upper endoscopies, 5 colonoscopies, 6 CT scans of various parts of my body, and an equal number of MRIs. Virtually all of these tests have come back normal or, if abnormal, the diagnosed condition has no effective treatment.
So the desire to disengage from the medical establishment for ME/CFS patients is strong. Doctors are not sympathetic or holistic and there is no coordination between specialists, especially after they hear the words “chronic fatigue syndrome” leave my mouth.
My “go to” approach to dealing with abdominal pain, which can sometimes come on in the way you describe — severe enough that I am doubled over in agony lying on the floor — is to take ibuprofen or aspirin and then a decent sized dose (~300mg) of gabapentin. That usually dulls the pain enough until it goes away. Without happening on that combination, I think I would have ended up in the emergency room even more than I have. And my experience in emergency rooms is usually similar to your first visit there.
But your point is worth taking. It is just hard to know if some new health crisis has emerged from decades of ME/CFS, or if it is just some new or severe manifestation of the same misunderstood, orphaned disease that I have suffered from for 20 years now.
What a great illustration of the difficult choices ME/CFS/FM patients have to make. Luckily except for something that looked like a heart condition I haven’t had to make those choices. With regard to symptoms, though, usually I understand that my symptoms fluctuate and I tend to try to wait them out. I am now finally, however, getting physicals done and doing the preventive types tests such as colonoscopies that are recommended.
I was recently told by my GP to have a colonoscopy because I had a
low Ferriten reading, despite the FOBT being okay. I am in the middle
of a big crash and knew my body could not support the strain of a
colonoscopy. I refused, took some alternate advice, and got my
absorbtion improving with slippery elm, aloe vera, stepped up the
appropriate greens, parsley, molasses, aloe vera juice. It did the trick.
At the time the GP did not explain that a colonoscopy would detect a
polyp which would be removed during the procedure, I thought it was to detect bowel cancer, and knew I would never survive any treatment.
I am surprised to read of so many folks being able to tolerate many
different procedures….. I suppose it is the level of illness. It is good to
hear you have those things done, Cort, denotes a great desire to be
here on the planet.
Cort, why are you giving a platform to someone who promotes & propagates quackery?
I don’t know exactly what Dan promotes but this is what I do know. He had a severe and typical case of M.E. He believes that sympathetic nervous system activation and autonomic nervous system dysfunction is a prime driver of ME/CFS. I haven’t read ANS rewired yet but someone I trust did and found it excellent. I gather his program focuses a good deal on taming the SNS. That all makes sense to me. Plus there’s the fact that he recovered and some people who have gone through his program have recovered as well.
Are you aware that he promotes the Lightning Process (aka quackery)?
I don’t know specifically what Dan promotes. I know that he suggests people with ME/CFS/FM try a number of different treatments both biological and stress reducing. I am not anti-behavioral treatments. While I don’t know much about LP I put it, meditation, mindfulness practices, yoga, etc. in basically the same basket – they’re all attempts to calm the stress response down so that the body can heal. I think combining stress reducing techniques with other approaches probably gives anyone the best chance of getting better. I imagine that’s what Dan does.
Hi Cort,
Long-time reader, first-time commenter.
Do you know of any articles/webpages that succinctly sum up the current neural re-training programs available (with costs), especially those designed for ME/CFS recovery? If not, may I suggest a future post about this?
Thanks for your work. I don’t know where I’d be without it.
Darn I think part of the question got cut off.
What makes ‘sense’ & what is a properly constructed peer reviewed clinical trial are 2 very disparate things.
I agree with Cort. Dan’s book was good. I knew most of the info in it, because of being in online support groups for years, but the things I didn’t know were useful.
Reading Dan’s story I see opportunity:
When detected, he had a very clear and document-able case of very strong inflammation yet no single marker of inflammation apart from his appendix being 4 times as big as it should be.
My idea: hospital had access to his fresh tapped blood and a large pile of removed appendix. Excellent material to study both in depth with all tools available including metabolics and others to see if a good marker of inflammation could be found.
Could save thousands of future deaths due to undiagnosed ruptured appendix, isn’t controversial in the least (established diagnose and disease, has nothing to do with “odd” ME) except for change to lose face and could be funded outside ME/FM research budget. Rince and repeat for other likewise situations/diseases. It could take diagnosis capabilities of “conventional” diseases to a higher level and increase knowledge about inflammation mechanisms.
Ideally, also study those patients immune and inflammation system: they may have theirs respond in unusual ways. That again should improve future diagnosis of “conventional” diseases and increase knowledge about inflammation mechanisms and the immune system.
As a bonus for us: thousands of misdiagnosed ME patients or patients with undiagnosed and untreated co-morbidities would see their life quality drastic improved. And finally one of this newfound diagnostic markers for inflammation in for exampled inflamed appendics or another inflammation related disease may just as well detect ME/FM.
I can imagine ER/hospital/local practitioners haven’t time, equipment and money for it but a large enough “fast response investigation team” like seen in aircraft crash response could be sponsored and sent quickly to the most interesting cases. In this idea ER/hospital/local practitioners shouldn’t risk legal liability reporting such cases but rather receive a large bonus for reporting and documenting well a perfect study case. What’s not to like?
I understand why you must sometimes go to hospital and also how amazingly painful it can be. But I’ve had that sort of please kill me I cant face this any longer pain and had absolutely no help for it. If your doctor says there is nothing we can do what next? I asked if they could tell me where the local drug addicts get their drugs because that, or suicide, was the only choice they were leaving me if the pain came back.
When I got appendicitis as a child my gp (UK) failed to diagnose it. My mother finally got me to hospital be saying if the gp didnt call an ambulance she would. The appendix burst before my emergency operation could take place and since I felt fine then I ate the lunch I was given. Had to be stomach pumped, got peritonits, parents allowed unlimited visiting (sign at the time you were expected to die) – but obviously survived. People need to know that the time the pain goes can actually be the most dangerous time of all.
I’m glad you survived your harrowing ordeal, Dan! I can understand why you made the decisions you did.
Last summer, I attended a chemical sensitivity support group meeting as I often have, and the person who had educated the groups about the perils of carbon monoxide poisoning gave me his own invented contraption that reverses the effects of said poisoning. It’s a mask that concentrates your breath so that you get more carbon dioxide, which somehow helps to release carbon monoxide from your tissues. I thought it was quite possible that part of my ME/CFS was due to exposure to carbon monoxide, so I used this mask as prescribed for 15 to 20 minutes each morning for a week or so. Like so very many other treatments, I wasn’t getting any miracle, and I felt desperate to feel better.
Suddenly I began to see flashing lights in my left eye, very alarming. I ripped off the mask and breathed deeply of the room air, hoping it would stop. It gradually stopped after a day or so. In the meantime, I made an appointment at the Wilmer Eye Institute of Johns Hopkins. I saw a temporary doctor there who was covering for emergency appointments like mine. With the insensitivity and arrogance that I have often experienced with doctors, he advised me that flashers are a sign of impending retinal detachment, and without further advising me of how I might experience retinal detachment, he breezed on out of the room.
So when I began to have visual difficulties in that left eye a few days later, I became very alarmed that just as the doctor predicted, the retina had detached. Several people advised me to go the emergency room (it was a weekend) and not wait for Monday to go back to the great opthalmologist. I was made to feel like a stubborn child who is risking blindness out of my supposedly irrational distrust of doctors – after 35 years of doctors emotionally abusing me, hah!
So I went to the ER and waited and waited and waited, thinking that I was going to get some time with the opthalmologist on call. I endured people’s fragrances and whatever it is in the air in all medical offices that reliably gives me a serious crash which lasts at least the whole next day, and I waited for 11 hours. It was a full waiting room.
In the end, I saw only a regular doctor who determined that there was no detachment, and she sent me off with no further comment. If I had had an actual retinal detachment, they could not have done anything anyway, so I may as well have been examined by my personal opthalmologist the next day! And I had a serious episode of hypoglycemia and a serious crash lasting two days, all in payment for the hysteria over my listening to people who don’t understand what it’s like to have been belittled and minimized by dozens of doctors over decades. And I had a huge bill to pay as well! Still a problem.
Also, the difficulty in the vision turned out to be huge floaters that formed inside my left eyeball. They were like chunks of grey tissue for months, and have finally become less problematical. I am convinced that trauma occurred due to oxygen deprivation from the unhelpful treatment for suspected carbon monoxide poisoning.
This episode is typical of my medical journey and the way family members, friends, and doctors have treated me. I will never go to the emergency room again. I shudder to think of the possibility of being institutionalized at some point, and my brain inflammation from chemical exposures drugged and my life being hijacked by the medical industrial complex – a fate worse than death. I have told my sons I would rather die than be institutionalized, so don’t do that to me, seriously.
Lori, that is quite an horrific story, and I thank you for writing it, you put so much into
doing that. It is an important warning to anyone who may be considering to used this carbon dioxide mask. I probably would have fallen for it. We try this, we try that, sometimes it’s helpful. MCS is such a big part of CFS/ME for some and worsens by the day with so may toxic products on the market. In Australia we have no standards on toxic substances in imports.
My heart goes out to you….. I have those same fears of institutionalisation of any
sort, losing control over what I take and eat and breathe in, and, yes, I too would
rather die than have that happen. I tell my friend, don’t call the Ambulance, just
let me go……. so, any comfort, you are not alone in this; I am lucky enough to
have a family, although not living near, who do understand, and a friend who helps
me.
Ten is the highest pain level so if you had thirteen of ten and complaints of pain levels in the past your doctors will not take it seriously next time either. Please stick to the pain level scale. I know what ten is and now you do as well. Take care!
Before I became chronically ill I had a similar experience. Pain at 10/10.Energency room doctors just said it was constipation even though I’d just had a movement the day before. It eventually eased. A couple of months later. Another attack. Pounding the walls levels of pain. Same diagnosis and sent home. Third time I vowed to hold out until the pain was again beyond my tolerance. This time I went to a different, but further away, emergency room, pulling over a couple of times to vomit. The doctor there felt my abdomen and they had me in an operating room in 20 minutes. Yes, my appendix. Like you, they said it was just at the point of bursting. I learned from that to go elsewhere if the doctors don’t take you seriously rather than try to last it out. ( I developed ME/CFS 13 years later and try to apply that lesson to now, after 28 years of appointments, disbelief and scorn from many doctors.
Wow. I hope everyone with abdominal pain and symptoms seeks help. My dear friend ( and support group member) tried to get help for several years – never taken seriously because of the FM/ CFS diagnosis. She called me one night to drive her to the hospital ER. Was still not taken very seriously. Three weeks later she died from a twisted bowel – a volvulus. Our support group had 4 other people who had surgeries for this problem – over a period of 10 years. They all survived. A long,redundant colon may predispose to this problem. My severe left sided pain turned out to be diverticulitis.
Geez. Thank you Dan.
Interesting remark Merida.
4 other so that’s 5 in total: even with a large support group that’s plenty.
https://en.wikipedia.org/wiki/Diverticulitis
“Diverticulitis, specifically colonic diverticulitis, is a gastrointestinal disease characterized by inflammation of abnormal pouches”
Reading all the comments it seems that both dangerous inflammatory appendicitis and diverticulitis are quite common in ME patients. Reading https://en.wikipedia.org/wiki/Diverticulitis it seems that (next to Dan’s testimonial for appendicitis) diverticulitis is also hard to detect in blood test and needs scanners.
Maybe *severe* digestive tract inflammation is *very* common in ME patients and extends to more than a single organ in the digestive tract. That could point to an underrated aspect in ME/FM and be an answer to the “your blood is fine, no disease nor inflammation” we all heard over and over.
https://en.wikipedia.org/wiki/Mesenteric_ischemia
https://en.wikipedia.org/wiki/Ischemic_colitis
-> For both bowels ischemia is a likely candidate for our problems:
* our blood volume and flow is often low
* according to these links both bowels have blood vessels that are highly sensitive to vasoconstriction, something believed to be common in ME/FM
* our fight-or-flee response goes hand in hand with high adrenaline, strongly reducing blood flow to the digestive system to save brain and other critical organs.
Maybe appendix and pancreas and… are also prone to ischemia in ME/FM… …and produce plenty of inflammation spreading through the body (combined with food malabsorption?
I avoid doctors and hospitals because:
1. Going to an appointment takes more energy than I have and in itself can cause a setback.
2. More often than not, doctors have no answers, or nothing effective.
I recently had facial swelling, called the doc’s office. Nurse said discontinue new medication. Swelling continued, worsened. My husband suggested I try OTC Claritin as seemed like an allergic reaction. It worked, symptoms cleared. My husband has no medical background, just common sense.
Thank you Dan. Good and timely warning for us all.
We have a rule in our home which we all agree to abide by:
the person in pain or unwell does not make the decisions about when it is appropriate to seek help!
That’s a FANTASTIC rule – makes total sense! 🙂 ?
If I had 10/10 pain for several hours, I probably would go to the ER. So thanks for reinforcing that level of common sense within me!
That said, I’d just like to state unequivocably that hospitals are dangerous places and no one should ever rush there, or trust what they are told without questioning it. Ideally, we all have family members who will Google research on the spot and advocate for us.
Medical misdiagnosis and error are the third leading cause of death in this country. We have the most expensive medical care in the world, and a declining life expectancy.
My mother got c-diff in a nursing home, and they refused to admit anything was wrong — I just happen to know the smell from the hospital. I personally called the ambulance to take her to the ER, and they wrote in the chart, “Family member took resident to ER against medical advice.” The ER diagnosed her with a UTI, and gave her antibiotics that are inappropriate for anyone with c-diff, which encouraged the growth of c-diff. It is only because I had her transferred to another hospital — again, with everyone aghast that I was doing something so “wrong” — that they did not kill my mother outright. And this is not an isolated incident.
Next time she went to the ER (at the “good” hospital), the doctor treated her for a real UTI once again with inappropriate antibiotics for a person with a history of c-diff. When I checked her prescription my Googling, the doctor got angry and stated that I was inappropriate. But her prescription was wrong! And I insisted (I am such a RUDE, rude person!) that they change it.
These are just a few of the many stories I could tell you. It is not easy to protect oneself physically and emotionally, or to make good choices under these kinds of conditions. Yet this is what we are all stuck with — and never mind the extra stress WE all have because of chronic illness and suffering unrecognized or dismissed by doctors!
I have found that a good Urgent Care center, one with on-site blood and urine testing and x-rays, is often a better choice to start with. Those places are easier to take, seem to have much more common sense and people skills than ERs, so one doesn’t have to wait until the pain is a 10! They have sooooooo much less attitude than those freaking ERs!