Extreme Derealization, dejá vu, flashbacks

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.

You should think of starting a holistic herbal protocol. Jap Knotweed will surely help but it is not enough to see real progress.

Also, with extreme neurological involvement, even the best of herbalists will recommend a course of antibiotics in the beginning, to lower the number of pathogens. Then switch to herbs.
buhnerhealinglyme.com/symptoms/severe-derealization/

Speaking about that...Have u tried an antibiotic test challenge ? 3-4 weeks of doxy ? i haven't heard of MS patients going worse on Doxy ;-) If anything, they will just get much better immediately (because tetracyclines are anti-inflammatory). Actually i am not really sure why with a positive ELISA and positive WB you still think this is just MS. It is neurodegenerative, sure thing, but reversible with treatment.

Anyway, "i have MS" right now means more like "my legs hurt". Well.... why do they hurt ? There is no known etiology to MS, and because of that, no known cure. Of course there is no cure, what's the cure for "my legs hurt"? Depends on the cause, no? If your legs hurt b/c of infection, then the cure is antibiotics. If they hurt because of autoimmune disorder, then steroids help. In your case, with positive ELISA and WB, i think the cause is pretty clear....

Is this akin at all to what some people (including myself) experience with severe migraine headaches? I get this aura effect where my vision seems off, and more notable, this intense feeling that everything isn't quiet right, like reality is off balance.

Nilrin--yes, it's very similar and probably governed by the same mechanism. I used to have isolated silent migraines once a year along with that altered state of off-balanced reality. I guess now you could say I have the aura every day. Do you take anything that helps with your migraines?

Mpost, I appreciate your recommendations and advice! Do you know of any liver-related side effects associated with doxycycline use? Unfortunately I can't take glutathione as it's high in sulfur, of which I have a pretty strong intolerance. I've been sticking with vitamin C, as it helps raise glutathione levels, as well as lemon water and dandelion root for liver detox.

trompeloy - I get flashbacks similar to what you describe. It's like these random flashes of memories of times and places in my past. For me they're not really accompanied by derealization though so I don't find them oppressive. I've been getting them since I started a major detoxification program about 6 years ago and they seem to be correlated with the intensity of treatment I'm doing at the time. Lately I've actually been getting them a lot.

I've interpreted them as some kind of neural rewiring going on that is part of the recovery process. I had lost a lot of memories of certain periods of my life but they have returned as I made progress in treatment. I've assumed that these memory flashes are some kind of reintegration of partially disconnected areas within the brain.

You might want to consider taking TUDCA for your liver:
/examine.com/supplements/tauroursodeoxycholic-acid/

It seems to be favored by bodybuilders to protect their liver from oral steroids. Doesn't seem to be as well known in the Lyme community although we are probably putting our livers through similar stresses. It's a bile acid that has a history of use in Chinese Medicine. I think it is a conjugate of Taurine which does contain sulfur though so not sure if you'd be sensitive to it.

project--great info, thanks for chiming in! I'll look into the TUDCA. The flashbacks don't always accompany the derealization for me either. Often they're passive, but other times quite menacing when coupled with preexisting toxin-induced anxiety. What was your detoxification protocol?

silly sheep, I got the PTSD and schizophrenia line from doctors too! And I do suspect Bart despite my negative tests. I've also had an allergy to sulfa drugs since infancy, and given my reaction to sulphurous foods and supplements now, I strongly suspect a CBS mutation. I just can't figure out why it's become so much worse within the past year and especially after taking antibiotics--I used to be able to eat eggs, meat, kale, etc. without incident, but now those give me anxiety and visceral agitation for days. I can't even consume milk thistle or turmeric without the same reaction.

I'm familiar with the CBS mutation protocol and take activated charcoal, magnesium, and yucca. I tried taking molybdenum 75mg last night and woke up with peripheral dread and background anxiety. I've read accounts it can cause a bit of herxing, but honestly I don't even know what's causing what anymore.

But I'm so glad you've managed to find relief!! What is your protocol for treating the mutation and detoxing??

trompeloy - Before I knew I had Lyme I did a 6 month raw food diet and some juice fasting along with eating a pound of zeolite and a bunch of MSM. I think it did lower my heavy metal toxicity. It was during this period that the memory flashbacks started happening occasionally. At the time I took it a sign that something was happening in my brain.

Nowadays I primarily use the sauna to detox. I still take Zeolite occasionally but mostly I use Modified Citrus Pectin. I also do oil pulling which seems to help. I did start taking TUDCA recently in addition to Milk Thistle and Liv. 52.

silly sheep--you've been very helpful, thanks! Unfortunately the link you posted only redirected me to the healingwell homepage....
And yes, while on antibiotics I attempted the MTHFR mutation protocol with folate and methyl B12 (Jarrow B Right complex) but I was so overloaded with toxins that it caused an intense adrenaline response, disorientation, overstimulation, face-melting panic & dread, etc. I stayed on the b12 separately for a while but it didn't seem to help and I was getting herxy from so much sublingual xylitol.

project--I'd be interested to hear more about your experiences with modified citrus pectin. Do you take it for biofilms, heavy metals, parasites, or all of the above?

gfields--yes, exactly! Really glad I'm not the only one going through this hell. I'm glad you're benefiting from treatment and finding symptom relief! Did anyone ever tell you the exact mechanism that causes these experiences?

I had an LLMD of some acclaim in New Hampshire who prescribed me the amoxicillin and clarithromycin. I didn't feel he was playing an active role in my treatment or offering much support--he wasn't too concerned by my dangerously elevated liver enzymes and hyperammonemia, which was quite negligent. Had I continued under his "guidance" I'd probably have ended up with some permanent damage.

Because of that traumatic experience I cannot and will not take antibiotics. And I can't eat spinach because of the high oxalates, glutamates, and histamine--which leads to increased nitric oxide production. I'm looking to DECREASE my levels...

Trompeloy, this is what I wrote on the other thread, gone for good ol' copy and paste, lol, I hope it helps???

For Sandra, k07 and anyone else……I don’t know if this will help at all, but this is kind of a collaboration of what I have come to understand from all my reading. It is NOT a complete explanation of all the complex interconnections of all the chemistry. I am NOT an expert at this, this is ONLY what I have understood from what I have read, and everyone knows what learning stuff off the internet can get you, lol!!

It doesn’t contain the science jargon that Lyme brains just love, ha, ha; I did try to write it out a simply as possible….in layman’s English, lol.

First the CBS. It generates gluthathione, taurine and cysteine when it is working properly. This is good. It also produces sulphite/sulphate and ammonia – too much of these are bad. (In a CBS mutation it does this process too much, so too much bad stuff).

During infection it uses homocysteine to make antioxidants. With a mutation it means it does that more, so you use up too much homocysteine (via the MTR and BHMT, more on that in a mo) so there is not enough to make SAMe.

Therefore you would need SAMe, BUT SAMe also stimulates the CBS upregulation, ergo you may make the problem worse if you don’t fix the CBS problem of too much sulphur/ammonia first.

In addition killing Lyme produces ammonia, so you have a bigger need to get rid of it. You can use L-arganine, which is something that breaks down ammonia; you can take charcoal to soak it out of your gut. There’s more science, but it made my brain hurt and these two things seemed to make the most sense.

Since SAMe is needed to make CoQ10 and cartanine and supplementing SAMe isn’t good right now you could supplement these if you needed to.

OK, the MTHFR C677T. If you have a MTHFR mutation it means you may need methylfolate. You need methyl folate because, with the mutation, your body is a bit rubbish at using folic acid from food etc. If you take extra folic acid this won’t help because your body is a rubbish at using it in this form. You take methlyfolate (5-MTHF) because this is what your body can use. You can take too much of this and get methylfolate side effects. (The symptoms, like achy joints and sore muscles, irritability and headaches etc, could also be ones you have from Lyme so it may feel like your symptoms are increasing). You need to start really low and slow with doses and alter its use dependant on how you are feeling. If it makes you feel bad stop taking it/lower the dose.


Now the MTR. The MTR uses B12 and methylfolate to make other stuff. The problem with a mutation is that you use too much B12. You can therefore supplement with B12 – which type of B12 you need (methyl, adnesol, etc) will depend on any other gene mutations that affect the type you body needs and how well it uses it.

The MTHFR and the MTR mutations also mean that there isn’t enough methylfolate and B12, which can result in a lack of SAMe, ‘cos these are needed to make it. Hence SAMe supplementation may be needed.

Finally, the COMT. This is to do with methylation – how those chemical reactions, with Folate and B12 etc, work – and therefore how well you detox, which is so important when dealing with Lyme. There are combinations of gene variations, and it is all very confusing, and it basically plays a part in determining which B12 you need and how much.

Since it IS all terrible confusing the ‘trial and error’ method seems to be the way. That is to say we don’t all need the same/all/any supplementation; Don’t just take any of the supplements, or at a given dose just because (you have a mutation/your doc says so etc, etc) but you have to work out what your own body needs, seemingly based on it’s response; Your diet has a lot to do with the stuff you put in your body, not just the supplements (eg eating high sulphur foods with a CBS mutation you are trying to treat ain’t gonna help/eating foods rich in folates may mean less supplementation of folate, et, etc); start any supplementation at REALLY low doses and work up gradually; If you feel worse stop taking it. Hmmm, this sound alarmingly like a Lyme protocol…….LOL!!

There are an alarming number of possible gene variation combinations and more gene mutations reported by the likes of genetic genie/nutrahacker etc. This is just my understanding of where I have got to so far. Please don’t use any of this for treatment; it’s not sciencey enough for that, lol. It’s basic and incomplete, but I hope that it gives you a bit of basis for understanding?

Phew….that’s right enough of that for now; I’m off for an Epsom bath….

Thank you for your post. I am experiencing very similar symptoms. I suffer from generalized anxiety but I don't think that I can chalk everything up to that. I'm going to ask my doctor to test me for Lyme's next. He's ran several tests but that wasn't one of them. So far, all I have been diagnosed with is having a very slight vitamin B12 defiency. Again, thanks for posting and I hope that you've been feeling better.

Trompeloy- interesting that you mentioned trying to decrease nitric oxide-- that's actually what we are trying to do for my sister. Dr. Martin Pall has talked about the role of nitric oxide in the onset and maintenance of chronic illness (he was talking about CFS, Fibromyalgia, PTSD and others, and we're convinced this plays a huge role in my sister spiraling downward). I'm pretty sure he says that hydroxyB12 is a nitric oxide scavenger. I've also read that ecklonia cava (sold as Fibroboost) and Acai berry are also nitric oxide scavengers. Are there foods in addition to spinach that a person should avoid if they are trying to reduce nitric oxide? Thanks

Definitely get a test done - your symptoms could certainly be attributed to Lyme disease.

Oh, don't expect much as far as a lyme diagnosis from a neurologist...I did go to one...he ruled out MS and ALS but didn't even mention the word Lyme.

When you get the results...check back here, okay? Even if the test result may be an overall negative, sometimes there will be lyme specific bands that are positive...and that combined with symptoms = lyme disease.

Yes, you do have a lot of symptoms of lyme disease.

Not a lot of ailments would cause all those, right?


We suggest that new members take a look at the thread at the top of the page title: "New to Lyme?...Start here!" It's full of great information...


I know how you feel about the neurologist. At the time I went, I had been having leg weakness and tremors - upper and lower body...(along with many other symptoms) I sat in the waiting room, waiting to be called in to see him...and said to myself "Please let it be MS and not ALS" I was so scared.

The neurologist asked me some questions, looked at the mri 's I had done...did an exam with some tests...and said he was confident I did not have either ALS and MS.

So, hang in there...and let us know how that appointment goes.