Hey everyone, I really appreciate your input and taking the time to read this. I hope my experience resonates with someone out there. I've searched through all the derealization threads in this forum but haven't been able to find the answers I'm looking for.
I'm 27 and have suspected congenital Lyme, and for over a year I've been dealing with episodes of intense derealization. It resembles an oppressive, dream-like, hypnotic, hazy, nightmarish and menacingly surreal state, almost like being trapped in an old video game, only infused with a sense of dread, unease, and impending doom.
I lose all sense of time and self, and my surroundings appear totally foreign and alien despite being a familiar environment--akin to the jamais vu sensation one might experience returning home after a long time away.
Often these episodes are accompanied by intrusive, spontaneous flashbacks of old dreams or snapshots of distant, dormant memories or rapid-fire imagery to random time periods in my past. I've experienced olfactory and gustatory hallucinations as well, and elaborate, prolonged sensations of dejá vu.
Conversely, while most of these "spells" are negative, I'll also experience transient episodes of intense exaltation, inner calm and tranquility, spiritual invigoration, and an overwhelming, almost ecstatic passion, zest, and enthusiasm for life--it feels like my mind and mental state have been transported to a previous time and level of existential awareness when I wasn't so sick and preoccupied with the daily management of my symptoms.
These experiences closely resemble simple partial seizures, and temporal lobe epilepsy was strongly suspected by two neurologists. But I had two outpatient sleep deprivation EEGs and a 7 day inpatient video EEG which revealed nothing (though from lack of triggers I experienced no derealization during this time, go figure). My MRI was normal. The only takeaway was a positive ANA titer and a positive ELISA test for Lyme disease--a total fluke given I've been symptomatic my entire life.
Before 2014, I would sporadically experience brief spells of dejá vu/flashback/derealization in the form of a transient aura during ovulation or preceding an acephalgic migraine. In February 2014 I became pregnant, had an abortion, and since then these episodes have become daily mainstays. I know traumatic events can trigger Lyme flares. And for what it's worth, I've also only had one period in over a year, though a blood test revealed normal hormone levels.
I've spent hours and hours researching the topic of derealization and epileptic-like "pseudoseizures". To be clear, it's not mere "anxiety" or "poor stress coping skills". A lot of DP/DR websites insist it'll go away if I only stop fretting about
it; while I agree stress can escalate the situation by way of the biofeedback mechanism involved in an adrenaline response, there is an obvious biochemical mechanism at play here and it's so frustratingly variable and in flux.
I've been able to isolate a connection to increased nitric oxide and/or histamine levels--the increase of inflammatory cytokines causes widening of blood vessels, which leads to microglial stimulation in the brain and production of nitric oxide, which causes further vasodilation, which leads to derealization. Weather/sunlight and exercise are my main predictable triggers, both of which can potentiate elevated nitric oxides levels.
I've experienced the most intense episodes during cardio exercise, such as jogging or bike riding. The first five minutes or so are fine, and then suddenly it's as if I've mainlined LSD and every smell and sight triggers bizarre flashbacks of dream/old memory imagery. It's seriously trippy and terrifying, but I'm always conscious that it's happening. It usually dissipates soon after I stop the exercise, but sometimes will persist for hours.
The worst part is not knowing the cause. Sometimes I get derealization almost instantaneously after eating--as histamine is released through digestion--or drinking coffee or alcohol. But other times I'll have preexisting derealization, and eating or drinking coffee or having a shot of vodka makes it go away.
Additionally, sometimes I'll exercise intensely for long periods and experience no derealization or change in mental state whatsoever. As I said, the variables that will cause it one day make it go away the next.
While it's so mentally debilitating and emotionally exhausting, I'm still able to function and hold a conversation when it's happening and pretend like I'm not experiencing the worst acid trip of my life, on loop.
The condition is predictably unpredictable, and so complex and convoluted with so many variables and potential culprits--histamine response, parasites, co-infections, food sensitivities, elevated blood ammonia, hepatotoxicity, history of eating disorder, autoimmune inflammation, low blood sugar, adrenal fatigue, sunlight exposure, exercise, caffeine withdrawal, oversleeping, leaky gut, etc.
I'm on a low histamine, low sulphur, low salicylate autoimmune diet. I don't consume dairy, wheat/grains, soy, eggs, nuts, seeds, legumes, nightshades, or cruciferous vegetables. I recently cut out fruit and coconut oil as those were aggravating my symptoms.
I quit smoking 7 months ago, but if anything the derealization has become worse and more unmanageable, perhaps because nicotine is a potent vasoconstrictor. A four month course of antibiotics also made the DR unbearable.
It's possible heavy metals are a component. I had a mercury amalgam filling removed in 2013 and grew up in a house with copper piping and mold issues.
Additionally, I tested Igenex negative for Bartonella and "B. Microti IgM 20, IgG <40" for Babesia.
I also strongly doubt this can be summed up as a catch-all "herx" reaction, which doesn't explain why it could come on so randomly and leave so abruptly. And I "detox" devoutly.
I'm both totally desperate and completely fed up. None of my LLMDs offered any advice. Due to undiagnosed Lyme, I was on psych meds (antipsychotics, antidepressants, benzodiazepines, anticonvulsants) for over a decade during my teens and early 20s and never experienced these symptoms, but I'm really adamant to stay the natural, herbal course since pharmaceuticals have caused so much damage to my system.
Again, I greatly appreciate any feedback or insight as to why this is happening. I'm starting to wonder if this condition will only progressively worsen, or if these symptoms are the harbinger to Multiple Sclerosis or some other neurodegenerative disease that originates from chronic Lyme. Whatever the cause, it's become agonizing and I'm losing my ability to handle this from day to day.
Chronic Lyme/Neuroborreliosis, symptoms since birth/26+years
Positive ELISA 2/15
Positive Igenex 8/15
IgM: 23-35+ 31++ 41 IND
IgG: 31 IND 41+
Derealization, brainfog, dejá vu &flashbacks, anxiety, disorientation, vertigo, acephalgic migraines, pain&neuropathy, IBS, multiple food&chem sensitivities, etc
AIP Paleo, choline, yucca, mag, multivit, E&C, Jap Knotweed, enzymes, charcoal
Post Edited (trompeloy) : 2/5/2016 4:54:04 PM (GMT-7)