+100%-

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

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

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

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