The first five parts of Kyle McNease’s ME/CFS story (The Suffering of One is the Suffering of All) related his journey from an athletic Oxford student to a biological basket case. When we left him, Kyle was near the end of his rope: emaciated, wracked by infections, sensitive to light, often unable to communicate – he was about as sick as you can get without dying – and dying was a real possibility.
His parents had had to make the horrific decision of determining whether to continue seeking care for their son – knowing that each trip to a doctor could kill him – or led him fade way. (Realizing that he was too cognitively challenged to act in his own interest, Kyle had signed over power of attorney to his parents.)
One of Kyle’s doctor put it in plainest of terms. There was no easy way out: either way – by seeking help or not seeking help – he faced an inferno. He recommended that they head right into the flames and keep seeking out help and so they did – and in the end it worked.
Kyle, you could say, lucked out – as he was reaching his limits, he found his answer but, of course, it wasn’t purely a matter of luck. Without his parents’ dogged persistence, he wouldn’t have had a chance. Repeatedly, he was chauffeured in the back of their van to universities and hospitals. There, he was the subject of the grand rounds visitations as specialists tried to figure out what could have so rapidly turned such a healthy young man into a such a frail shadow of himself.
Two ideas absorbed their thinking: he had HIV/AIDS or he’d picked up some sort of infection on his overseas travels. He was repeatedly quizzed about where he had been and repeatedly given HIV tests, all of which, of course, turned out to be negative. Kyle’s story got around and his test results were passed around. At one point, Kyle’s parents engaged one of the world’s greatest diagnosticians: he took a deep look at Kyle’s results and said he couldn’t help.
But then the answer came from a Colorado toxicologist. Kyle’s residence in a rural farming community meant he was most likely exposed to high levels of pesticides, yet his heavy metal levels were low – too low. That suggested a seemingly paradoxical answer: Kyle’s low test results didn’t have mean he had low levels of heavy metals – it meant his body was awash in them! It suggested his detoxification pathways had become so depleted that instead of trying to process the heavy metals present and shuttle them out of his body, his body was in a last gasp effort, storing them away in his tissues in an effort to avoid exposing his organs to them.
That process was probably saving his life, but it was also killing him slowly as the heavy metals continued to build up and deplete his system. Not only had they opened the door to all manner of nasty bugs, but they were contributing to his severe weight loss – which was making matters much worse. As his energy pathways broke down, his body began metabolizing his tissues to get resources and releasing those heavy metals back into his system – making him worse. He was on a downward spiral – perhaps not unlike that that experienced by other gaunt, severely ill patients.
Further testing revealed that Kyle did have high heavy metal levels – but in two heavy metals (arsenic and another) that most initial heavy metal tests don’t assess. The heavy metals, though, were simply the first slice of the onion. Kyle’s heavy metal exposure appears to have damaged so many of his systems that heavy metals were just one of a number of problems he had to address.
Kyle also tested positive for all the herpesviruses (chronic EBV, CMV, HHV-6) as well as other viruses (Parvo B19, Lyme disease) and pathogens (candida) and he had Bell’s Palsy to boot.
Plus, he had orthostatic intolerance (neurally mediated hypotension), low blood volume (chronic dehydration), hormonal problems (adrenal exhaustion progressing to transient Addison’s disease, reactive hypoglycemia, thyroid, testosterone issues) and sleep issues (insomnia). He’d just suffered through a six-month bout of pulmonary pneumonia that had almost killed him.
In short, he was very much a severely ill person with ME/CFS; in this case triggered by a heavy metal exposure – something we don’t hear about much. (Note, though, that Lily Chu’s study found that about 20% of ME/CFS patients mentioned a significant toxic exposure prior to becoming ill.)
Kyle’s case – as does Jeff’s and Jen Brea’s craniocervical instability – demonstrates that many pathways to ME/CFS exist. Viral exposures, spinal stenosis, food poisoning, mold, toxins, heavy metals, etc. – and in many cases nothing discernible – can set the stage for what appears to be a rather common endpoint in ME/CFS: evidence of viral reactivation, problems with orthostatic intolerance, stimuli sensitivity, severe postexertional malaise, mast cell issues, etc.
It’s still not completely clear why such a short but intense exposure to heavy metals (the renovation of an old barn) was able to trigger such a severe illness but Kyle’s genetic and environmental background may provide some clues. Kyle grew up in an environment – a year-long farming community – that was pretty much guaranteed to maximize his exposure to pesticides. Surrounded by fields, crop dusters regularly dusted his house as well – a dusting intense enough for the trees around his house to lose their leaves.
Plus, genetic testing revealed that Kyle has a polymorphism that negatively affects his methylation and detoxification pathways. The combination of the long-term pesticide exposure and Kyle’s genetic weakness may have left Kyle’s detoxification pathways so overloaded that it took just one big hit (exposure of the heavy metals in the barn) to destabilize them.
Something similar could be happening in people with infection-triggered ME/CFS: a slow but mounting (and completely unnoticed) erosion of their immune pathways, which when the final pathogen hit occurred, resulted in a radical destabilization/reorientation of their immune system. Gordon Broderick’s models suggest that the immune/hormonal systems of ME/CFS patients have sought a new level, and Dr. Klimas’s immune networking studies suggest a radically different immune system may be present in ME/CFS.
Kyle, not surprisingly, strongly believes ME/CFS/FM is a multiple pathway disease that we attempt to silo at our peril. He doesn’t believe it was just the mono or the car accident or the mold or the heavy metal exposure. It’s all of those things (plus genetics in some cases) which impact a bunch of pathways that result in ME/CFS/FM.
Recovery
Kyle’s recovery was dramatic. After an initial burst of improvement on his chelation protocol, he spent the next two weeks getting dramatically worse – sleeping almost 24 hours a day. As he and his parents wondered if they’d made a huge mistake, his recovery started: the excruciating pain dropped a bit and began to speak a bit.
From there, his recovery was astonishingly rapid. Kyle had been severely ill for 3 ½ years. At the end, he couldn’t communicate and had to be carried to his appointments. He’d muffled tears when his best friend died because of the strain they’d imposed on his body.
Kyle running again
Yet six months after starting his new protocol, Kyle McNease was running sprints again. At the end of the first year, he was like any other student at the university and had stepped right back into his old patterns – a straight A student who graduated in the top 1% of his class.
No one knows why Kyle was able to recover from his emaciated state so quickly, but he has some ideas. To his doctor’s great surprise, he never lost his musculature. Even at his most emaciated, his body refused to break down his muscles. Why that never happened is anybody’s guess. Kyle wonders if heavy labor his ancestors from the northern and western parts of Europe engaged in caused them to prioritize muscle sparing at the expense of other systems.
Once he got better, Kyle never took any time off. He moved to Chicago, lived in Honduras (where he was infected with two strains of dengue fever, yet remains well) and is now living in southern Florida with his wife and baby. In 2017, he ran a half marathon and said he felt like he could run for hours.
Over the last two years, his home has been hit by two hurricanes and he’s had to move twice yet, except for the loss of what used to be a near photographic memory, his health is fine. He recently received a $12 million dollar grant, the writing of which required him to work from 7-7:30 AM until 6 PM, work from 9 PM – 3 AM writing the grant – and sleep from 3-5 AM for several weeks.
Things That Helped
Various means of chelating were used to address Kyle’s heavy metal poisoning. Kyle warned that “since some forms of chelation therapy can result in hypocalcemia and potential death, make sure any route you pursue in detoxifying heavy metals is safe and conducted under close supervision”. (*He did not attempt IV chelation).
A year-long acyclovir trial made little difference but valacyclovir did help alleviate many of his viral symptoms. He noted, though, it was a rough process.
Zoloft, water, increased salt and IV fluids helped with the neurally mediated hypotension. Every time he was given IV fluids, he felt better.
Several rounds of IV and intramuscular Rocephin, doxycycline and azithromycin addressed his bacterial infections. Questran (cholestyramine) and seven consecutive weeks of Diflucan addressed his fungal infections.
Hormonal Treatments
Cortef/hydrocortisone for the adrenal issues was quite helpful. Kyle had this to say about this controversial treatment:
“I would strongly disagree with the way this issue is sometimes framed. Two extreme camps seem to exist. There is the staunch do not use hydrocortisone camp and the try it it’s benign camp on the other.
Depending on the particular person and medical context, Cortef may be a life-saver or could make matters much worse. He stated:
“One of the major concerns I have with treating adrenal issues is how inexact the dosing is. My endocrinologist and regular physician would constantly reiterate that I was to “up dose” during times of added stress or when fighting off an illness.”
But how much, though? What specific amount was needed? It has been my experience that the correct amount is highly variable and requires trial and error. Barring frequent blood work, it is difficult to get a real-time snapshot of one’s cortisol levels. Something similar to a glucometer but for adrenal output needs to be developed.
I have much more to say on this subject, since I was hospitalized for adrenal insufficiency. For now, I will leave it at this: coming off of the medication can be daunting for some; for others it may be relatively easy. If you have to go two weeks or longer at a dosage of 20mg or more of cortef/hydrocortisone, please make sure you have some form of medical alert on your person.”
Testosterone replacement therapy brought his testosterone levels back to where they needed to be for a male in his 20’s, not 80’s! Kyle didn’t expect to this treatment to help much but it really moved the needle for him, and markedly improved the quality of his life. He noted “that when you’re suffering intensely, improved quality of life, is not a trivial matter” Plus, as his health improved, his testosterone levels normalized, and he was able to discontinue the medication.
He got Myers cocktails as often as he could get them – which was quite rare. Acupuncture.
Ribose! Ribose! Ribose! and creatine helped with mitochondrial energy production. He also got sublingual and IM B12 injections and probiotics galore.
He tried diets, ranging from vegan to extremely low carb, mostly meat diets. Each had their own physiological benefits and burdens. He’s still experimenting with this area almost daily.
Kyle was resistant at first to trying Klonopin. During one hospital stay, the attending physician recommended he try it. He reported:
” I was very resistant to it at the time. I was still fairly young and naïve and didn’t like the idea of something potentially sedating me. I was so weak that I was afraid that if I went to sleep I might not ever wake up again. Finally, they did convince me to try it. It proved to be a revelation to me at the time.”
“This drug is not for everyone and should definitely not be taken lightly. It has a dependency risk to it. Having said that, if your quality of life is a zero and something helps you out the way this did me at the time, the benefits (for me) outweighed the risks.”
Recently, he’s tried low-dose naltrexone (LDN), and CBD oil (without the THC). He reported:
“The LDN has helped me function better on a daily basis. If hard pressed to describe its benefits, I don’t know how I’d quantify them. Any time I forget to take it though, I can tell a difference. I think my overall exercise tolerance is better, and maybe I’m a little less prone to getting sick. Again, I can always tell a difference in retrospect.”
“Please take the words of caution from others seriously regarding LDN and sleep. I tried to dive right in at a higher dose than I probably should have, and I did have a mix of insomnia followed by extremely vivid dreams! This seemed to normalize after a few weeks. “
“The CBD oil has been a huge help to me. I try to approach these things with a healthy dose of skepticism. I expected no benefits at all. However, I did find that it helped immensely with pain and cramping–one of my enduring struggles. Though it doesn’t seem to make me drowsy, it has seemed to help me sleep deeper and longer when I do decide to call it a day.”
Modafinil has been something of a mystery. He reported:
“One final thing that I’m still trying to think through is Modafinil. At one point, I was put on 100mg of modafinil. It had an interesting paradoxical side-effect for me. My resting heart rate tends to be far too high, and this stimulant, while promoting wakefulness and vigilance, also decreased my resting heart rate to a more normal level. It did help me have more energy and complete tasks. “
“However, I did find that I would feel extremely exhausted when the drug was out of my system. I wish that it came in a smaller dose, something like 25mg, because I think that would have helped me more in some sense. I don’t recommend anyone else try this, but I have broken my 100mg tablets in half to try at a lower dose. I did seem to get most of the benefit without as much fatigue when it wore off.”
Mind/Body
Mind/body work helped. Kyle discarded the mind/body divide, stating that in his experience the two are intimately connected. Anything that effects your brain or your psychology (the two are different) is going to affect your body.
He reported:
“I would be remiss if I did not mention a concerted effort I made to change the way I approached suffering. I did make a rule that I would schedule worrying and negativity. I tried very hard not to focus too much on the negatives outside of those scheduled times. It didn’t make the terrible things go away, but it did change my focus so that I wasn’t in a constant state of catastrophizing.”
“I also made it a point to watch 30 minutes of comedy a day. Laughter is like a form of prayer for me. Of course, this was once I had gotten well enough to even do something like watch TV.”
“I prayed quite a bit and found that my experience with suffering changed my perspective on life. All I wanted then (and now) was to regain some sense of synergy with my own self, with others, with the natural world and with God. With so much technology in our lives, it is easy to become disconnected. The God part may not be for you, and I completely respect that. For me, prayer and meditation became my source of sustenance.”
“Adopting an empathic, non-judgmental approach to understanding myself and others made it much easier for me to extend positive regard or something like grace to those around me. “
“Finally, I tried to take an inventory of every good moment that had happened to me in my life. Some of those were more momentous than others, and I rehearsed their memories in my mind repeatedly. Since all I could do was lay in a bed, that was the revelry for me. I let my mind take me back to the lyrical moments I loved so much and tried to experience them like an observer. I also tried to visualize myself in future scenarios doing meaningful things. Surprisingly enough, I’ve been blessed to have quite a few of those scenarios come to pass.“
Final Words
Kyle and his family
I’m married to my beautiful wife and best friend. We just had our first rambunctious daughter. I get to research and teach at wonderful universities. I’ve spoken to thousands of young people and hopefully helped or inspired a few. I’ve continued to travel for mission work and academic conferences. I’ve been able to publish a few articles.
None of it has been easy. None of it has been traditional. For example, when my wife went into labor, I had to go down a few floors and get a quick bag of IV fluids and solucortef to make it through the delivery (which took 36 hours). It was an adventure, and I’m really thankful to still be here for it. Often enough, it didn’t look like I would be. The idea that I could make it back was so remote as to seem like science fiction.
My one piece of advice for anyone who might read anything I’ve written is don’t give up. If you’re suffering from this horrible disease, the good news is that there is so much more that can be done for this patient group.
When we consider that there is still not one FDA-approved drug specifically targeting this disease, that can be downright discouraging. But treatments will come. Let’s try to live long enough to see them come to fruition. In the meantime, while researchers are still trying to find a cure, let’s become a community that engages physicians open to treatments that can at least improve our lives today.
Kyle McNease – The Suffering of One is the Suffering of All – An ME/CFS Narrative
- Pt I: REELing
- Pt. II: Eros Lost, Absurdity and A Love Song
- Pt III: “Didn’t Life Know I Had Plans?”
- Pt IV: “Didn’t Life Know We Had So Many Plans?”
- Pt. V: Remorseful Survivor – Kyle Finds An Answer
- Pt VI: The Suffering of One – Relieved: Kyle McNease’s ME/CFS Recovery Story Detailed
So pleased for you Kyle- thank you for the encouragement. In truth- I feel there ARE things the medical profession could try to help ease our symptoms; saline IV being one of them and anti virals under supervision being another. Sadly- most are not willing to do so in the UK- but who can blame them when the BMA would probably haul them before a disciplinary Board. As in all things- rules are brought in to protect but then become so restricting that careful innovation is not allowed and patients/clients/the public lose out. Best wishes and may God bless you and your family, ?✝️
finally after 27 years when I was exposed to mercury and diesel at work and being on disability for that time , I have found a dr who gave me a seven week detox program
that is working. yes, it does detox heavy metals. I owe 22,000 on my credit cards for medical care. the price of her detox?? 150 dollars. we can get better. I now have hope and a lot of anger at what happened to me at a high school where I was given an award for being one of America’s best teachers. The next year there was a mercury
spill and we were not told about it and then they sprayed diesel on us for 8 weeks.
Can you share the $150 detox protocol? Thanks!
I will first have to get permission from my doctor who I will see on weds. I promise to get back to this website on Monday.
I meant to say I will get back to you on weds. There is also a mercury detox in the internet. I will ask her more about that one also
On thurs I will give you a website where you can order it
I will not forget because I know how important it is
I got home late tonight
Callintragative healing center 1815 9868205
Tell them you want to order the seven week detox kit.
Thanks for your story. I have had M.E.
For at least 26 years now .believe it or not I just got my brain together with my computer to diagnose my condition and show it to my Dr.s . They looked at it and said” your right ” but they STILL don’t want to learn anything to help me . I live just north of San Antonio Texas . You would think that I could find a M.E . Competent Dr. here but not yet . Any thanks for your help it really helped me !
What is your Doctor’s detox program? I suffer from medical heavy metal poisoning for 3 years.
I have ME/CFS myself and I’m absolutely committed to the Dr.Andrew Cutler Protokoll for chelating heavy metals. It’s by far the best and savest method. Search for the “Andy Cutler Chelation” selfhelp group on Facebook. It has over 60.000 members and you will find any Information and help you need there.
Am I looking at a different Andy Cutler Chelation fb page? The one I found has 694 members, not the over 60,000 mentioned..
I see on a different page that an Andy Cutler has a PhD in Chemistry from Princeton – is this the same dr? If yes then supremely qualified to the point that even if he was the only one supporting a method, it could still be worth trying. Just attempting to get a feel for the idea of de-toxifying to ease ME before I go ahead. There are SO many suggestions online and you could spend a lifetime trying them all. Alongside trying to live, as much as is possible.
Kate, Andy Cutler died in 2017 at the young age of 61 (despite looking at least 10 years older). Some swear by his ‘frequent low-dose’ protocol, while others have indeed gotten worse.
And what almost none of them mention, is the overwhelming fact that millions of people take high doses of ALA once or twice a day with none of the harmful ‘side effects’ that his devotees warn about. Of course some do suffer from side effects, but if what he claims is factually true, hundreds of thousands of people would become very ill due to redistribution of heavy metals…but that just isn’t happening.
As with any protocol, there are pros and cons on both sides.
I will get back to you on weds or thurs
It is herbal seven bottles. One for kidney liver blood etc and one for heavy metals. Very gentle very easy to do for seven weeks
After I did it for three days I began to feel better
Rita. The detox w as put together by an md in Chico who studied ancient herbal remedies.
It is amazing to me that herbs. Can detox but they can work on the liver and so that makes senses. If you want more info you can call me onsunday at 608 201. 2785.
Call me on Sunday at 608 201 2785. I will give you more info
Properly identifying and dealing with heavy metal toxicity can be a game changer. I’ve used multiple chelators and done both oral and IV chelation, with appropriate nutrient support, with good results.
Arsenic can get into mitochondria and dramatically impact ATP production. It’s a significant carcinogen. It’s not rare – it can be found in water, factory farmed chicken, brown rice, red wine, etc.
A urine test “provoked” with one or more chelators (DMSA, DMSO, EDTA) is the best way to find out if one has heavy metal toxicity. A blood test, unprovoked urine test, or hair sample are less effective, so heavy metals can be missed.
As Kyle’s story shows, gerting tid of heavy metals can add a significant positive impact to a treatment
protocol.
Hydrocortisone and other hormones are important, too!
Did you think about taking ampligen
Kyle, am very glad that you are well now. I would really like to get in touch with you as I have also suffered like you and had no one to help me except my family. After 10 years of being bed bound and house bound, in 2016 the second neurologist realised what was happening to me and started me on Vitamin b12 injections which I get monthly. It’s taken 4 years for me to start getting the effect of the b12 injections. At the moment I can’t afford to remove the mercury/amalgam in my teeth which the NHS dentist put in my teeth. Am still struggling. I did DNA test before seeing the second neurologist which showed me what was happening to me but I can’t afford the supplement to detox my body.
Helen,
Could you see a low-cost dentist at a medicaid clinic? If you are being affected by the mercury fillings (and most people are not, but some are), then you’d want to have those fillings replaced with composites before doing any sort of chelation.
As for B12, you might have your MMA levels tested and see if your functional B12 is okay. It might be necessary to have daily injections. Especially if the monthly ones have finally started to help.
I’m so sorry to hear of your suffering. I would suggest that you order Jarrow Methyl B12 5,000 mg and allow to dissolve in mouth. Preferably above your front teeth to be absorbed there ( happens more slowly, and if you need to sip something to drink, you can usually accomplish it without affecting the dissolving tab.
According to Fred on this site who has done a great deal of research and a doctor (can’t think of his name now) recommended this brand.
You will probably need methyl folate if you have genetic issues as I do and possibly B-minus from Amazon.
The Jarrow Brand is only about $13.00 for the 5,000 mg. If you feel improvement with B12 injections, you may see a difference with these
God Bless you
I read Kyle’s story last night when I was supposed to be going to bed early!
I read all the posts and the tenacity of himself and his parents is fabulous to witness.
As he says don’t give up.
Dr Mark Hyman had terrible trouble with mercury poisoning as he’d lived in China – there must be a problem in that region – and he apparently has a genetic inability to detox mercury.
I have lots of mercury fillings and will see if I can get accurately tested.
One aspect of Kyle’s experience that stood out for me was his interaction with the psychiatrist.
Can these particular kind of people be removed from public areas for everyone’s safety?
Jarred Younger, in one of his talks for Solve ME/CFS Initiative mentions the dead fish in the scanner example to warn people of the dangers of taking scan results as fact, without checking whether something else could be causing the finding.
Psychiatrists take note.
There are some great sayings here in Ireland. Two of them that I love are:
They’ve lost the run of themselves
They need some manners putting on them
There are parts of the mental health industry that I think have completely ‘lost the run of themselves’ and quite definitely are in need of having some ‘manners putting on them.’
I think these individuals need challenging. The problem is often people are vulnerable and don’t know what the mental health ‘professional’ is talking about.
I have been challenging the therapy industry in my former area. I was very naive in the beginning and honestly thought that if I let the powers that be know my experience (not a good one and I think was a final kick start to my 12 years of health mayhem), they’d exclaim oh my goodness this was very bad and do something about it. As you can imagine that isn’t what happened…
So, I’m currently on my fourth formal complaint. As you might expect their main response has been to defend their position and undermine me.
This has been running in the background and foreground if my life for the past 12 years and this last complaint, since early 2018.
I wonder if their strategy is to try and wear me down so that I will back off? Well unfortunately for them I’m not dead yet and have settled in for the long haul…
What I have learnt during this process is that even if something seems obvious, it still needs formally stating.
I know that many people actually agree with me but in an Orwellian ‘double think’ culture no one will openly say it.
I also know that when the culture changes, people will simply say they knew what was happening was wrong all the time. Yeah great, thanks for your support!!!
So my illness and my struggle to be ‘heard’ by the therapeutic community have run concurrently over the last 12 years.
Interestingly when I made an improvement earlier this year by sleeping more restoratively there were, I think, a few factors involved.
I wrote my last response in the complaint proceedings and can clearly see they don’t have a leg to stand on – whatever the final decision. That released a burden I had been carrying for 12 years.
I then managed to, what I call unhook myself from the ceaseless wired feeling I have lived with, particularly over the last three years. I had become so accustomed to this feeling and I think I was also scared that if I wasn’t wired I might just die.
I started taking CoQ10 – (I also take Magnesium) I noticed I had a little more stamina.
So life is very complicated at times, though I am on a mission to simplify it:
My wellbeing, my son’s wellbeing, my aging dogs and all the people I go to as a caregiver.
My warmest wishes, as always, goes to anyone who reads this…☺️
Thanks to Kyle and also to Tracey Anne in the comments section. It can be so hard to remain tenacious when faced with the scientific/medical communities. Well done both for not giving up. Both of your strengths are amazing!
Thanks Kate,
I returned to this post and was rereading the comments and came across yours ☺️
I came back here because there were a couple of things in Kyle’s story that helped me understand some of my issues.
Firstly Kyle mentioned being dehydrated and needing IV fluids. I get dehydrated too but am unaware of it because I’m not thirsty.
After watching Jarred Younger talking about brain inflammation and the possible lack of oxygen and/or glucose leading to lactate as a by-product (which shouldn’t be in the brain), it got me thinking.
I seem to have a problem with getting enough glucose to be available to my brain. If I eat some chocolate, particularly the darker kind, sort if midway between milk and dark, it’s like – Wow! All systems firing and ready to go!
However the Immune Dictatorship I am ruled by, have vetoed chocolate, glucose, ginger biscuits and even peanuts (on which I was fuelled for a few years).
For whatever reason, if I eat anything remotely sugary – (I mean even peanuts!) the Immune battalion has decided to target my eyes and my bladder. So my eyes go blurry and the left one seems to get too big for my eyelid. My eyes became very puffy and itchy.
I also have difficulty changing focus and one day I was driving and could see perfectly clearly but I was aware that what I was seeing through my window out onto the world was not being processed very well, further back into my brain. I had the sense that the connection wasn’t great (the optic nerve?) – very scary…
Anyway I can see that my brain may be running a bit low on glucose and may have built up a bit of lactate. So I looked up how to get rid of lactic acid in muscles…
1 Rest – Yes, heard that one before.
2 Drink water.
I have been experiencing what I call Clogged Exhaust Brain – where my brain just seems to seize up, so I just can’t think very fast. My brain does work, just very slowly.
So, I thought I’d try drinking more water, regularly throughout the day and particularly when I’m busy and my brain is working hard. It actually worked! Clogged Exhaust Brain freed up a bit. I don’t know why exactly but it did.
Even today, I started feeling a bit peculiar this afternoon, so I had a drink of water and I began to feel better. I’ve bought some mineral water too, as it has some salts/ minerals in it, as I don’t want to flush everything out.
Also it’s helping my bladder, as I was getting interstitial cystitis, I think. So, all working better!
Also despite not being able to eat chocolate anymore – when I was eating it before, it did also put my blood pressure up (theobromine?), made me feel faint if I stood talking to someone and piled on the pounds – it did give me energy to do things.
For so long I had been so tired and lacked any energy – to the point in the winter of 2016/2017 my legs would buckle under me. I couldn’t work out how I’d survive my son’s parent/teacher meeting or how I could drop my car off at the garage, to be repaired and then walk to the centre of town?
I remembered that chocolate always gave me energy and thought I’d try a small bar. It did work.
I started eating more of it but was also reacting to it – the issues with my eyes started and then my blood pressure started climbing. However, they were side effects.
What I learned was that I had some sort of fuelling problem and that I could function, if I found the right fuel.
My biggest trigger is food. I get all sorts of very bad reactions and many of them revolve around sugar and particularly fructose. I think I have also sometimes had reactive hypoglycemia, like Kyle. I would begin to feel cold, right the way through me. My brain would start to get a bit confused and so on and eating something sugary would make me feel better for a bit. The problem was I would just continue on the rollercoaster of rising and falling blood glucose levels. I’m not diabetic and my last HbA1C was 39 mmol/mol, in 2017.
I knew I needed to balance my blood sugar and bring my inflammation down but I also needed to work and get through my day.
I do seem to have managed this now and have been stabilising for the last 6 months or so.
What made the biggest difference was destressing enough to sleep better, which meant I was in less of an energy deficit and was able to tolerate more food (olive oil, sunflower seeds, chia seeds and linseeds).
I could then let go of my dependence on chocolate and glucose. My blood pressure went down. I tried a few different nuts and it took until recently to realise that Brazil nuts were causing my problem with excessive sweating and seemingly keeping my blood sugar raised.
When I stopped eating the Brazil’s (one day I noticed my tongue react), my fasting blood sugar went down.
I had been absolutely ‘wired’ for years and had just become accustomed to it. My sleep pattern had been all over the place. I realised I had to do something when I had been asleep in the day and then got up and went to work in the car. I realised as I drove, that part of my brain wasn’t awake!
I thought to myself, parts of my brain have no idea what time it is. I decided I had to make my sleep more regular and try and sleep less in the day.
I started to try and eat at the same time, go to bed and get up at the same time each day. I thought if I could get my circadian rhythm back in some sort of order, my body would be able to function better.
Now, in October, I’m actually doing well. Since April I’ve been sleeping better and I generally don’t fear not being able to get from one end of the day to the other.
With my new found secret weapon – water – I’m doing even better.
Life is a bit like painting with numbers, as in I have to fill in the spaces. I don’t quite work automatically and I have to focus on my food.
I had a disastrous run in with some bicarbonate of soda I took to calm my bladder – I just don’t think I could process it. I also took 1 paracetamol last Monday and 1 on Tuesday but again I can’t deal with them and they set my asthma off.
However, I’m ok and I feel I’m making real, sustainable progress which at times I wondered if I would ever manage to do ☺️
Thank you for sharing. It provides so many helpful insights and a lot of hope.
Your experience is important in that it could be shared with medical students and for on-going CME credits. Your sharing is important for learning by patients too.
Two of my takeaways are as a patient – I need to 1) persist in medical discovery about my current biological state and 2) listen to my body and be attuned to what it needs.
Your wisdom is very much appreciated.
Hi Janet,
I’m not sure if you’re replying to me, Tracey Anne, or someone further up the posts.
If you are chatting to me, then I’d be more than happy to outline my trial and error approach and actual sustainable improvements I’ve achieved.
I do think one thing that has definitely helped (though I think it catapulted me forward on a trajectory I think I was already on!) is having been through the training as a counsellor/psychotherapist.
For a start I generally understand the therapy industry and the divisions between the psychiatrists, psychologists, counsellors/psychotherapists, psychoanalysts and the splits within each of those professions.
Also, having been behind the scenes, so to speak, I have witnessed that there are many people working diligently -making mistakes – but having good intentions, whilst others seemingly have a different agenda and that’s when things go badly wrong.
In addition, once people have invested a tremendous amount of money, time, energy etc in a professional training they would be unwise to threaten that.
Unfortunately hierarchies persist and people find progression difficult, if not impossible, if they rock the boat – that’s life.
So, I’ve learnt that just because a protocol is in place, it doesn’t necessarily mean it’s ok, or suitable for everyone.
I suppose I have more confidence in my own hunches because I am aware that sometimes professionals just don’t know but they’re sometimes unwilling to say that.
One thing I do believe in – is that even if there isn’t anything that can actually be ‘done’ or ‘changed’ – just being connected in some way to someone or a group of people, who are genuinely supportive and present, may be a positive force in an individual’s life.
I certainly find that I can write things on this site, that I cannot talk to anybody else about. That’s invaluable…
Who was the Colorado toxicologist? Is he someone who can be contacted?
That’s great that he’s recovered so well, but his story seems to have little relevance to the typical ME/CFS victim who contracted a virus and then was sick forever after. To put a more positive spin on it, maybe one could say that we now have to figure out how to detox from whatever virus that was initially.
While the trigger was different it was interested that Kyle actually ended being besieged by viruses and bacteria. After he got the detox started he had to take care of the viruses.
While the trigger was different the pattern was quite similar to those with an infectious trigger: rapid onset, severe fatigue, light and sound sensitivity, weight loss, etc. It’s really hard in the end to know where the heavy metals ended and the viruses and other problems began.
In fact I would guess that Kyle’s heavy metal experience was different than others with heavy metal poisoning in that he got so sick – and in an ME/CFS way.
His case reminds me of Jen Brea and Jeff who had atypical and ME/CFS-like cases of craniocervical instability in that it was so ME/CFS like…It’s also reminiscent of Ken Anbender’s case where he was first felled by heavy metal poisoning and then decades later recovered using Dr. Pridgen’s antiviral protocol!
I think there are many ways to trigger ME/CFS but in the end I wonder if many of the same pathways have to be activated to cause the extreme fatigue and PEM, the POTS, the viral reactivations, etc.
I’m finding with myself lately, we are also addressing retrovirus with antiviral herbs. I’m seeing all sorts of interesting things happening. It’s a slow go…..but positive.
Dave,
With all due respect, where is the proof that ‘typical ME/CFS’ is caused just by ‘a virus’, or that anyone with ME/CFS ‘contracted a virus and then was sick forever after’?
Have you ever wondered if there was anything else going on when ME/CFS patients got sick? If not, it might be something worth pondering. The evidence that there’s a multitude of factors is growing every year.
I have found watching Stephanie Seneff from MIT interesting in relation to Glyphosate and what the body does with toxic materials it can’t get rid of.
Also Zach Bush MD has spent a great deal of time and effort looking at the increases in cancers, dementia and autism.
I urge you to try.. n acetyl cysteine..
My story is very similar to Kyle’s… similar toxicities and infections and similar treatment. I wish that I could find a doc to Rx Questran.
I am SO happy for you, Kyle!
I had to laugh about your breaking tablets in half. I break all kinds of tablets up into all kinds of pieces. My doctor knows that I am very cautious about taking things and will figure out a dose that is right for me, so on the prescription she often writes “take as needed”. ha ha!
I have also emptied out parts of capsules, put GcMAF on my skin instead of injecting it, etc. You name it, I’ve customized the dose of it. So don’t feel alone in doing that kind of thing.
What Chelat treatment did he got?
I find the article both encouraging and frustrating. Encouraging because there are obviously answers out there and frustrating due to being unable to figure out a starting point. That’s the story that ME/CFS though, I guess.
Is there a resource where we can find more detailed info about the what/when/why and how much of his protocols?
Je pense que notre système immunitaire est affaibli par le stress psychologique et physiologique lié aux personnes et produits toxiques de l’environnement. Selon nos sensibilités propres notre système immunitaire à été affecté de manière différente pour chacun
Cort can you please share the chelation protocols Kyle used? You mention he didn’t do IV chelation, so it would be really helpful to know what worked for him.
I’m currently doing chelation IVs for a lead level that start out at 40 on a provocation test. Not trusting the test, I did a second provocation first, and the level was 37. I’ve now done 35 IV’s (under the supervision of a very experienced integrative doc) and the lead level has consistently dropped down to 17. But the IV’s feel really hard on my body, and I’m always wondering what else I could do instead. I too have had to treat viruses and bacterial infections at the same time. It’s hard to know the “underlying cause” but I feel like I’m slowly tipping back into homeostasis.
Is it me, or are these stories starting to suggest that ME/CFS is a symptom rather than an illness purely of itself. Just a thought?
I think you are right. I think it is a symptom of heavy metal poisoning.
I’ll have been to some of the best integrative docs in the u,s,
They think it is a sign of heavy metals, Iowa tested and it showed when I was exposed to heavy metals my autonomic system and my immune system stopped working. That would create a lot of different symptoms.
We are exposed to heavy metals every day. They art in diesel and in pesticides and herbicides, and we exposed to this stuff all the time. That is also my theory
Our daughter has been increasingly fatigued and ill since sinus surgery last year. although we think she has had a moderate case of ME/CFS for a long time.
This is her remarkable account of sudden and profound improvement following Tamiflu. There is also a second case with CFS/ME remission in a link following her Tamiflu history.
Friday working around kindergarten kids, lots of sneezing.
Felt my throat swell on Saturday
Sore throat Sunday; it was definitely red around the edges.
Nose running sneezing on Monday but went to work,
Worse on Tuesday, the sickness coming on strong
Wednesday so bad I had to stay home from work and was laid out so I called Kaiser.
Desperately asked for Tamiflu.
Prescription came so took two on Wednesday.
Thursday stayed home just to rest but started to feel better.
Friday. Was able to go to work on Friday. Felt tired but not bad enough to stay home.
Saturday was able to go to the Professional Development Workshop. just a little bit runny nose and sneezing and a little bit of fatigue.
By Sunday I was well enough to go surfing.
This is remarkably quick for someone with chronic fatigue syndrome and a virus and/ or bacterial infection.
Monday had plenty energy went to work, Surfed after work.
Tuesday felt so good with great mood & so much energy that I went to work, did errands and went surfing after work. I haven’t done this in years.
Called my mom to tell her because I’ve never felt this great in years and it was so shocking because the only thing different I did was the Tamiflu.
Dosage: took two pills on Wednesday, Thursday, Friday, and one pill on Saturday, Sunday, Monday, & Tuesday.
By Wednesday I was fatigued again. Back to my normal,
By Thursday the fatigue returned and back pain with body pain came back.
By Friday fatigue returned with body pain and brain fog
. Had to take a nap after work both Thursday and Friday; could not meet my friends to surf.
I cannot explain why Tamiflu (generic) worked and why it works so quickly and so well, yet I have never felt that good in over 2 to 3 years. It even helped me to be in a better mood. I had the normal amount of energy I used to have in the past where I could work, do my errands, and surf all in one day.
I would very much like to try a 30 day supply of Tamiflu (generic) twice a day to see if it helps with ME CFS. Certainly it did something great since I’ve never felt that good in years.
And I’m not the only One see the link below.
https://cfsremission.com/2017/03/17/temporal-remission-from-tamiflu/
I’ve had definite improvements since starting TRS for heavy metal detox. The advantage with TRS is that you can go slow and avoid taxing the body too quickly.
Beautiful story but I am not sure you can compare them with Jenn and Jeff’s. There are many stories of people doing very well while continuing various medicines. ..the real test is staying well after stopping them
I understand your thoughts Sue, but I’m not sure that’s true for everyone. For me the real test isn’t staying well after stopping a medications – in fact it’s nothing to do with a test. I will do anything that allows me a reasonable quality of life, better than the one I have now with such debilitating and limiting symptoms. I will take a given drug “for life” if it works.
Genetically I too have methylation & detoxification impairments. I got diagnosed with ME/CFS a few months after my 3rd major chemical exposure – first DDT in childhood (ages 5-7, during which time it’s possible I was also living in a house with asbestos insulation), then farm chemicals (herbicides & pesticides) between ages 22-24, and finally aerosolyzed anti-freeze for a few weeks at age 32 when I was in peak physical condition. The last one tipped my system over the edge and 3 months later I was on a 2-year hiatus from work & school because I couldn’t walk a block or concentrate on anything. It was downhill from there for the next 18 years.
I’m more functional now than I have been in 25 years, thanks to several strategies Like Kyle I get IV saline, take LDN (and now Mestinon) and swear by d-ribose and several other of his nutrient therapies. I’ve never tried – or been offered – Cortef or anti-virals.
I have wondered about trying chelation therapy but wanted everything else stable before I started. And now I have books with my ME/CFS sleuth to finish to belatedly build some retirement savings, so I can’t afford to lose any brain to self-induced illness as long as I can cope at this level.
Kyle, what an incredible story. I am so happy that your parents did not give up in finding the solution to your illness! And that through that you have been able to find the source of your ME/CFS. I have had ME/CFS for 20 years and have been functional (fulltime job, managing a family), but also have had to leave my job a year ago due to my ME/CFS and lack of energy etc etc etc.
My question (which may seem a bit odd) is was there anything you were thinking about as you lay in your sick bed or did you just ‘exist’ due to lack of cognitive abilities?When I am so depleted I just hold onto God and his promise for my life and that He is in control.
Thank you for sharing your story!
Vanessa (in Sunny South Africa)
I’m so glad Kyle was able to get the medical help he needed to get better. I believe there’s always a solution out there, it’s a matter of finding it.. and also working with doctors who are willing to go on the journey of finding it with you.
I’m interested in learning more about his various chelation/heavy metal detox methods used.. I’m about to embark on that route myself, and it would have been nice to know which methods are yielding the best results for people..
Hi Natasha, Kyle purposely did not provide the details of his treatment for the reasons provided. Hopefully this will help.
Thanks for posting his explanation Cort — it makes sense. Too many could hop on whatever specific protocol he used and possible get a lot worse.
I do find it interesting though that he described getting ‘way worse’ as having to sleep ‘for hours, only to wake up briefly, then pass out again’.
I think many of the classic cases of ME/CFS where we need to sleep, need to rest, but can’t, because of the ‘wired but tired’ phenomena, would LOVE to be able to sleep for hours and hours…as long as we could eventually wake up feeling a lot better.
I dont think it was the heavy metal program ore so the anti depressant medication. I am not saying it was in his head as the suffering is real and severe but altering his brain pathways through medication could have resulted in recovery. Look at john sarno