Dementia

When I was researching information for my book “Love, Hope, Lyme: What Family Members, Partners, and Friends Who Love a Chronic Lyme Survivor Need to Know,” I wanted to learn how stress can flare Lyme symptoms, and what Lyme survivors could do to minimize their stress levels. Many of the hundreds of Lyme survivors I engaged with had told me that they were trying to reduce the stress in their lives.

Stressors, big and small, commonly spur debilitating flares, and can happen at any time, often without any warning. I discussed this with Dr. Diane Mueller.

“With Lyme, it’s almost like chickenpox, where it’s in remission. We have dormant persister cells that are laying just below the surface, likely in our nerves and joint spaces, since those are two common areas that we tend to see Lyme. If we’re not getting overly stressed, they stay in remission,” she said.

It All Starts in the Brain

Many Lyme survivors struggle with brain fog, which can be very stressful.

“It’s tricky, because there’s not a medical diagnosis for brain fog. The closest thing we have is mild cognitive impairment, which is like, oh, we don’t have dementia, but the brain is not working as well as it could be,” she said. “Mold toxins and toxic metals are also contributing to that inflammatory process in the brain, because brain fog really is the brain being inflamed,” she said.

“Especially in the early onset standpoint of Lyme, we see cortisol, that stress hormone, rise,” she said. “Cortisol typically will fall for most people, but when that cortisol rises, it can negatively impact the hippocampus, the memory center of our brain. That can contribute to the brain fog, that is related to dilemmas such as, “What did I come into the room for, or where did I park my car?”

Dr. Mueller said, “There’s bad stress and good stress. Good stress oftentimes is called eustress. An example of good stress is exercise, which is technically a stress on the body, but then the body recovers and is stronger.”

From a Lyme disease perspective, what we’re really looking to do from a stress standpoint is keep ourselves regulated from longer-term stressors.

“The stress that I’m concerned about is when the brain starts to get dysregulated because we’ve been under stress for so long and we’re not adapting to it. When that happens, the brain loses its capacity to properly see how much cortisol, which is our stress hormone, is in the blood,” she said.

She continued, “When our brain loses our ability to see that, then one of two things happens. It’s either thinks the cortisol’s too low or it’s thinking our cortisol is too high and it’s not, and then our cortisol crashes. Either one of those things causes problems.”

“What we see also is dysregulated cortisol can contribute to immune dysfunction. One of the big relationships we see with stress and Lyme is this imbalance because of this dysfunction, and then suddenly, our immune system is not working properly, the signals are not getting sent out. That’s where we get that resurgence of Lyme disease,” she said.

“No human can eliminate stress in our lives. The question is how we work with this stress, so it doesn’t become this dysfunctional brain pattern,” she concluded.

Stressor Response

Dr. Mueller is also a chronic Lyme survivor who has had to learn how to deal with traumatic responses to stressors. She said this helps her related to what Lyme survivors go through.

“I thought about moving to a deserted island because I was dying and that sounded like the best way to go out. I’ve seen other people say they could not work or that they had to leave their partner,” she said.

“These types of fight, flight, freeze actions are normal responses, and is what happens when the body goes into a stressful scenario. Your body is doing a very normal thing when a stressor occurs,” she said.

She said these types of scenarios are typically run by hormones such as adrenaline and the problem is when we are in these types of stressful situations and the hormones that take over are not proactively helping the body treat the disease.

“The vicious cycle we get into in this is when we feel those things, we secrete all that adrenaline, then we’re sending signals to our body to say, “break down tissue, not heal, not repair.”

“When we do that, the Lyme and the infections and the symptoms can get worse. Then we just get stuck in this vicious chicken and the egg, where the adrenaline in the mind is worsening the symptoms, and the symptoms are worsening the adrenaline in the mind,” she said.

Getting to the Root Cause

To solve the stress problem, she said we need to get to the root cause of what’s challenging the Lyme survivor, which in some cases can be deeper than the Lyme and even the coinfections.

“I’ve seen many patients who have seen dozens of different doctors, and their problems are not being solved because Lyme disease is only one of the root causes. Yes, we want to address Lyme, but we can get really lost with the root when it’s other things. I’m talking about roots beyond the Lyme and the co-infections,” she said.

“For instance, the exposure to mold is triggering of that recurrence of Lyme. Maybe the first time they had Lyme, they just had flu symptoms,” she said. “Then they move into a moldy place and get chronic Lyme symptoms. It gets diagnosed as Lyme, and they don’t realize that their home is causing it.”

She said this root cause analysis can help the Lyme survivor truly understand what they are truly facing and then put a treatment plan in place that will be more effective. This can reduce much of the stress they are dealing with.

Listen to all episodes of the Love, Hope, Lyme Podcast or on YouTube.

Fred Diamond is based in Fairfax, Virginia and can be contacted via Facebook. His popular book, “Love, Hope, Lyme: What Family Members, Partners, and Friends Who Love a Chronic Lyme Survivor Need to Know” is available on Amazon. The e-version of the book is always free to Lyme survivors. PM Fred on Facebook for your copy.

I bought these when my dad with dementia still lived with me. I thought it was a cute project we could do together, but we never got around to it. He's not able to do them now so I went ahead and painted them (even though painting is not my forte). It was kind of bittersweet.

In women it can be hormonal they tell me, disappearing in the mid-fifties, when the menopause cuts in. To me it's an emotional brainstorm, which burns out the computer screen, leaving the sufferer unable to function. Lightning strikes can have the same effect - twitching, memory loss, staring blankly into space, like you're in a trance. Everything speeds up - urination, defecation etc. until the body reaches a climax, whereupon it collapses back down again into stillness and the mind into silence. It's almost like manic-depression but physical not mental sensitisation followed by de-sensitisation. Freezing during the day - boiling in bed at night, like an overnight heating storage system. Bitter taste before an attack, sweet one after - like insulin kicking in. In fact I think the whole of life is like one, gigantic migraine attack youthful discharge, followed by collapse into old age's illness and decay: Inability to keep food down, loss of memory and awareness - dementia as the equivalent state of migraine delirium, where you lose contact with the real, solid world and drift away into serial dreaming, contacting dead others, like you.

When I first took pills that worked, I could feel my body reacting as the chemical imbalances were corrected. Half an hours sleep and I was right as rain but it was only effective with mild attacks because during severe ones I couldn't keep anything down. Taking showers was something else though. I could feel every drop of water on my skin as though it were hail stones, such was the effect of the mould derivative on my nervous system.

When I went to the dentist, he said I suffered from bruxism. What's that I asked, incredulously? 'Teeth grinding - everybody who has migraines, does it.' he assured me.

'Oh?' I responded.

'Yes, it's the suppressed anger' (as if I didn't know!).

He suggested a gum guard like boxers use, in order to stop it. Worn overnight he said, it would stop the teeth crunching and therefore the pressure in the jaw that led to the headache (That was the theory anyway).I tried it once but it was like trying to go to sleep with an apple in your mouth, so I soon dumped it as impractical and uncomfortable.

Before an attack my skin would crawl as though it was brushing up against cobwebs. My shins got so itchy that I'd scratch them until they bled. I'd also get this funny prickling sensation on my left shoulder and a high pitched whistling in my ears. My doctor said it was probably wheat intolerance. What about all the tension in my back and other joints and the only relief I got was by cracking them? Gas, he said. And the rheumatoid arthritis after an episode? None of this is related to the migraine but is a separate issue, according to him. We'll put you on so-and-so, which should soon sort it out (It didn't, anymore than his answers satisfied my curiosity).

I believe as I said earlier, this proves it's some kind of accumulation/ discharge problem, showing up as the hot/ cold difficulty, body tension and relaxation, plus other polar opposite symptoms: This includes the static I'm prone to, when I touch plastic handrails or pull off my jumper, made of synthetic materials (The spark across my nose is shocking, just shocking!).

I tend to drop things after an attack because I'm not aware I'm holding them. The doctor said its possibly nerve damage or blocked blood vessels as a result of the migraine. This and slurred speech, memory loss etc. indicated signs of minor strokes but not to worry (Apparently all these mini-strokes can build up into a major one in later life, which can kill you and this is the real danger with migraines, even if the attacks disappear in your mid-fifties as with most people: Personally I wish I hadn't found this bit out ).

Life is a pain in the neck and then you die, recover, forget all about it, then die again, in an endless cycle of hope and despair. Such is life.

I am thankfully passed all this but I had twenty or more years of migraine (now 72 but was told that by my mid fifties I would lose them. I didn't. Fine if you are a menstruating female but not true of a grumpy old pensioner, trying to write. Mine disappeared in the mid sixties. In light of this here is a story I wrote from that time:-

I've got to get this paperwork finished by tomorrow but all I can hear is this thump, thump, thumping bass above me. I want to get into my head. I 'need' to get into my body, to get this stuff done but no matter where I go in the flat, this incessant noise grabs my attention. I could kill the bloody bastard!

The pills don't work anymore. I've got a splitting headache and I know tomorrow it will have turned into a full blown migraine: Three days in bed, vomiting, sweating like a pig, stuck in delirium...

It starts with tension in the neck. I can sometimes feel a sharp pain where it joins the skull. One day I know this blockage will turn into a stroke that will kill me but there's nothing I can do about it. I tried anger management but left after punching the guy who ran it. He knew how to push my buttons, so I pushed him back. The guy above me is different. I fantasize about taking a sledge hammer to his music centre (Kicking in his door and kicking that thump machine into a million pieces). Any resistance from him and I'd do the same to him. The reality of course is different...We pass in silence or polite greetings. He doesn't care one iota about my feelings, the arrogant sod. It's like being in an abusive relationship. I hate him but my feelings don't touch him. This is a living hell.

I won't let him drive me out of my own flat. Sound smashes your ability to concentrate. It splatters all over the place, so that you become a flat, empty, mindless husk like him. Responsibility is about seeing but he wants to remain blind. Drinking, partying to all hours. Where does he get the money from? How's he even fit for work? Still I never am - mainly because he makes me sick, literally! Why do we have to carry these wasters? Why!? Why!!? Why!!!?

A silent, contemplative society - that would be my dream (A monk to his viking raider). Peace! Peace! Peace! That's all I want! Christ, is that too much to ask?

I'm a workaholic - I admit it but where would this society be without people like us? They'd just let things fall apart or worse still, rip them actively to shreds. They'd rob people, beat them up, threaten and cheat them, just to get their needs met or expect to be spoon fed like the babies they are. They resent the world and everything in it, including themselves. Work is a four letter word in their vocabulary. Honesty is another swear word to them. They'd rape and kill, to get what they wanted but ask politely? No way! They kill cats, grunt obscenely and drive their cars and lives into the ground because they don't really want to be here. Drugs, alcohol, lack of sleep, reckless abandon of all sorts - anything but settle down and develop inner resources, inner knowledge for dealing with the world they find themselves in. They're damaged goods that they helped damage. Self-sabotage motivates them, not thought. They call people like me boring: Shopkeepers, accountants, academics just as they called the first farmers the same because they were the mighty hunters - posturing and pouting, in their antique roles as time passed them by. They see themselves as predators still and we as their prey. And why not? We've got the real power in society, not them. They are the victims of this world - dinosaurs left behind when the rest of humanity caught on, to what we were about. We want to see a different world - they are only happy if they can take their old one with them. They want to convert the new world to their old ways, dragging us down into their hell. We don't conquer the outer world and turn it into replicas of our own lives. we conquer ourselves and our primitive fears, to better appreciate anything new and different we encounter. Still enough about them and our efforts to convert them to a better life, raising their consciousness to our level.

I know an attack is coming on because get this vile taste in my mouth that reflects the mental bitterness I feel inside. My skin feels like it's flea infested. I get severe indigestion because I feel life is hard to swallow. Perversely I also get the munchies, where nothing I eat satisfies this craving inside (Stuffing down my feelings because being sick means no longer being able to control them). Coffee is one of my triggers. I know this from vomiting up a cup I'd drunk half an hour earlier, in a distilled version (no sugar or milk, just the black steaming caffeine).

I reckon the reason migraine is on the increase in this society, is because of the ever increasing pressure on its members. It's like an orgasm or a massive electrical discharge. Things build up to a climax then explode like a volcano. Epilepsy is that way and I think migraines are no different.

It's like trance dance as seen in voodoo and whirling Dervishes too. Continual motion, leading to inevitable collapse of the organism through adrenal fatigue or society through panic attacks par excellence! I believe were just vacuoles sucking in and blowing out experience or electricity generators, accumulating then discharging energy. I believe too this explains ageing as motion between two points and again dementia as chronic delirium or loss of contact with the world, leading to balance problems, loss of appetite and inability to keep food down (The big trip of unconsciousness as opposed to small deaths on the way). All of this fascinates me and why not? My doctor says I'm talking rubbish in his own particular, polite, professional way. I accept his reaction with a pinch of salt. What does he know? He should be on my side of it.

I awake the following morning. Awake, is that what I really am? I feel like death, staggering about the flat like a zombie. It took ages to drag myself out of bed and look in the mirror. Yes that confirms it - I am dead again. That sallow skin, those lifeless eyes - black around the edges, bloodshot within. Tongue out. Yes it's that white flag of surrender again (another overnight snow storm, covering it). Sometimes it's yellow with vile bile and it tastes bitter and ugly like my mood too.

I just want to curl up and die - oh God, here it comes! The wretch throws himself down before the God of the toilet seat and retches. He prays to the Lord of Vomit. 'Please accept this humble offering - yurp!' Oh God, here we go again. Yurp, yurp, yurp! Nothing there but I don't listen to my stomach. Once more with feeling - yurp!'

I sit there for five minutes, leaning back on my heels. Is it over? Is another eruption on its way? Eventually I stumble back to my feet and walk shakily back to my bed. 'I'm ready for my shot, Mr Romero! No, I don't need anymore make up and I remember my lines perfectly. Groan, grimace, stagger isn't it?' I don't need the thump, thump, thump of his music above me anymore - I've got the recording going on in my head already. Sorry no, make that the sound of blood pounding around somewhere in my crunched cranium.