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» LymeNet Flash » Questions and Discussion » Medical Questions » Derealization and getting back on track

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Author Topic: Derealization and getting back on track
LymeCFIDSMCS
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After years of treatment, I still have profound feelings of derealization. I feel like my brain is so damaged it may never recover. I really just don't feel like myself, just like I'm a ghost in a body, and absolutely and utterly confused by everything people are doing around me.

Also, my time sense is completely off, so it feels like every day is five minutes long and then over. All I do is wake and go to sleep, and it's so hard to know how to take supplements, or even just get food.

I don't really remember most of the time if I have initiated a connection with a new person. With my life seriously whittled down from what it was before I got so much sicker with TBDs, I will sort of throw out hooks to people but then, I just can't sustain anything. I think what I have -- aside from derealization -- is abulia, which can be caused by strokes and other brain injury. I'm not depressed -- I really don't feel highs or lows at all now -- but I also do not feel motivated, beyond just not having the energy, to do anything.

I don't have the physical energy or ability to do anything almost all of the time anyway, but I used to feel -- pre-TBDs but post-ME/CFS -- that I always *wanted* to do and accomplish stuff, and I had ideas. Now I have no ideas, and nothing seems to have a point. It's like there's just no movement in my head, it's hard to explain.

Do others have this? There was a potential meningioma spotted in my left frontal lobe on an MRI, but not large enough to operate (it's typically a benign tumor) and some of what I'm describing seems related to frontal lobe injury in some cases.

I guess I'd like some hope it will ever get better, as it's just such a weird and constant sensation now and I've been treating my TBDs for so long without this symptom getting better (in many ways it's worse).

And I'm wondering if anyone has any exercises -- for brain, focus, any of this -- that could help.

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lpkayak
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that is one sx i didnt get but there are a few others here who talk about it. if you search derealization i bet you will find a few who deal with it. it sounds awful.

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Lyme? Its complicated. Educate yourself.

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lpkayak
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there is a long list of posts if you just type in derealization to the search that is up at top of page

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Lyme? Its complicated. Educate yourself.

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Robin123
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For me, sense of disassociation and lack of time sense ended when I started on Armour thyroid last summer. Prior to starting on it, I tested low in T3 and normal TSH.

It's an Rx. I started by taking a 1/2 tablet, or 30 mg, in the am and pm, now up to another 1/2.

My doctor explained that an ill body goes into hibernation, hence low metabolism and lack of time sense. So I jumpstarted my metabolism and I feel present now.

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cozynana
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I also felt a sense of disassociation and like I was living a surreal life.

I didn't feel like I was really experiencing anything.

It was like I was watching a movie and every body else experienced life but me.

I think getting on a good treatment plan and a biggie was treating parasites.

After the parasite treatment was the big break for me.

I know exactly what you mean by not being interested in ideas and planning things.

I was just trying to stay alive.

If you have not treated for parasites I would look into that.

If you need suggestions for parasites treatments I would happy to tell you the ones I used.

Gael is a great resource for parasites.

She agreed to talk to me on the phone and visit about parasites.

I am guessing she is still a great advocate and would be willing to do the same for you.

I still do a parasite treatment around the full moon.

Hope things turn around for you soon. It is a very lonely place to be.

There is hope, I am now back on community committees, back to cooking more for hubby,

go to the movie and enjoy it, etc. You will too, don't give up.

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LymeCFIDSMCS
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Cozy,
I have treated Babs a lot (herbs & meds) and also done *some* parasite treatment but probably not enough. Yes, would like to know what tx worked for you for parasites and what you do for maintenance for sure.

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LymeCFIDSMCS
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Robin that's interesting about the thyroid too. My thyroid tests were normal in the past but I haven't tested levels recently so I will. Thank you.
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Sammi
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LymeCFIDSMCS, I am sorry you have this. I know it is very scary.

Below is my reply to a recent reply post about hypothyroid testing. I think it could help you also.

Be sure to get the Free T3, Free T4 (besides the T3 and T4) and thyroid antibodies tested in addition to the normal panel.

Positive antibodies indicate Hashimoto's Thyroiditis. Some people who have Hashimoto's, including me, have other results in the normal range but treatment is still warranted. I suffered with multiple hypothyroid symptoms for several years because no one tested the antibodies. When they were finally tested, one result was 2000 points above normal!

It can be difficult to find a doctor who really understands thyroid issues, but it is not impossible.

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RC1
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Hey there,
I just wanted to tell you that I got to the other side. For me it was exactly how you explained it. I have or (had) Lyme, Bart, and Babs. I tested positive for all. I don't know which infection was to blame for it.

It lifted toward the end of my treatment of Bicillin injections, I was also on Doxy and Tindamax at the time so I can't say it was the Bicillin for sure. It does make me think that it is from Lyme though. I also have the bad genes for detoxing Lyme.

It can get better and go away, it did for me. It was by far the worst symptom of all of them for me. I'm sorry you have it also. I thought at the time that everyone that had Lyme had it too. I hope you lose this symptom soon. I just wanted to say that than it can and does go away.

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LymeCFIDSMCS
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RC1 thank you for that reply -- I am curious how long you did the Bicillin shots? I did them but probably not for long enough. While I didn't have the derealization symptoms lift on Bicillin, they did help with other neuro sx obviously related to Lyme (like optic neuritis) so obviously they were hitting the neuro Lyme somewhat. And what dose did you do?

Also, for Sammi, thanks for that reminder as I had actually been reading about Hashimoto's then of course abruptly forgot! So I'll put that on my list for next doc appt. But I thought I remembered that with Hashimoto's it can be really complicated with thyroid treatment -- the dosage is critical and too low of a dose can actually make it worse?? Do you know anything about that?

Thanks everyone.

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RC1
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I did Bicillin LA 3x a week for 5 months. They were a real pain in the a** literally. I had been treating for about 7 months before Bicillin, been doing Dr. B style abx since the beginning.

Best to you.

Edited a** [Wink]

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LymeCFIDSMCS
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Heh RC1, I do know the pain in the a** you speak of since I have done some already (ice packs for the pain, I say! Lots and lots of ice packs!), but you have encouraged me to try another round of Bicillin. Have the shots helped with other neuro Lyme symptoms for you?
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RC1
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If I were to choose the treatment that I believe I got the most out of I would say it would be the Bicillin. I lost a ton of symptoms with it.

Another thing that helped me a lot was Cholestrymine. I know it's not popular with most. It can be hard to tolerate but if you go low and slow it works great. It lifted the toxin haze out of my brain and I started to feel like myself again. I wish I had done it a lot sooner.

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CD57
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I have had this 24/7 for 6 years. It started after I began treatment with abx and has never gone away no matter what I did. It is a really horrible symptom, I am so sorry. Intermittently it would lift so I know it's not damage but nothing makes it go away for good.

It may be toxins or parasites, I am trying to treat both now. I do believe I still I have active Lyme and infections.

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Andie333
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It's a symptom I have also had, but thankfully, it now only happens for a few minutes every couple of weeks.

In my case, I was treating Lyme and cos, and taking ceftin, rifampin and artemisinin. I was also augmenting treatment with teasel root.
At one point, I ran out of the teasel, and between orders, I realized that sense had lifted. I held off taking the teasel just to be sure.

And when I started taking it again, it happened. Now, I'm no longer using the teasel. For me, losing that quality of life and connection just wasn't worth it.

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jwall
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Are you taking a benzo (ativan, klonopin, valium) by any chance? Or antidepressants? I had this awful feeling when I started klonopin. I stopped it and still had it. It took a long time to go away after stopping klonopin.

I know it's a symptom of Lyme and coinfections, but in my case, I think klonopin exacerbated it.

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Spirocheta
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I'm glad I found this post, since I am dealing with similar symptoms.

I got a new infection in November, detected by December, and started ABs. By the 28th of December, a switch went off in my brain as I was driving, and all the symptoms you describe began quite suddenly. I thought I had a stroke. They have not abated since then. I feel like I am going insane.

Do you have cognitive symptoms as well as the derealization? I suddenly cannot learn new things, my short-term memory is compromised, I get lost in the car, and I cannot type/speak correctly at times. I have lost most of my visualization capabilities. My brain was super fast, and now it can't figure out what it's doing at all. And it all happened in one day!

Does anyone have any idea what this is? I am freaking out myself. It doesn't feel like a "psych" issue from suffering so much. It seems organic in origin. I am so sorry you have it too LymeCFS.

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cozynana
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LYMEcfid, My LLMD prescribed a parasite drug/supplement for 2 months and then would switch out to a new one.

I started with Alinia, too strong for me. I was on Ipil-Ipil a parasite herb I believe from Africa,

I did Paradex, Hanah Kroeger Wormwood combination, Para-L from my LLMD office,

and one other. I also was on Nystatin for what he thinks is a huge fungus/yeast issue.

Between the combo I feel so much better.

My body is not on the move anymore and my intestines do not hurt near as much.

I still do the parasite meds around the full moon and still on Nystatin daily.

Good luck, hope you can resolve your issues.

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johnny_broadway
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I've had this as a symptom since I was a teenager. I still have it to this day, but just try to go with it (and focus on it the least amount that I can) until I can find a doctor who can help me.

I guess sometimes it just comes with the neuro stuff. I have major cognitive dysfunction - such as not being able to learn anything (just graduated college, imagine that!) or remember anything new or old, severe brain fog, lack of concentration, lack of motivation, etc, etc.

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LymeCFIDSMCS
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Yes I definitely have severe cognitive symptoms too, and I too felt like I had a stroke (I didn't, per my MRI, but it definitely felt like it -- even w/ one-sided muscle weakness and tremors and lots of weird stroke-like stuff).

One intriguing thing a neurologist told me (lyme-literate) is that some people with migraines have what he called "migraine strokes" where they actually have seemingly permanent damage like a stroke. I had never heard of that but I do get migraines too and Lyme and co. have made them and everything worse.

I can't learn anything new. I moved into a new house two years ago and I feel so confused by my house (I was in other house when I first got my TBDs, so this is first new space since then). I keep trying to make it make sense, but I literally just can't orient myself to the space if that makes sense, like "learning" a space even feels impossible so I find myself just confused, staring at walls, never sure why I'm in a room.

I am a writer but also lost much of my vocabulary. I can talk, just more simply. I can't write creatively any more though. I also just don't have ideas -- I used to have creative ideas so easily, and now I just don't. Lots of other brain stuff for sure beyond that but I can't think of it right now.

And cozy, thank you for that detailed info. about the parasite treatments.

And no, not on a benzo or antidepressant -- I know some of these symptoms have been linked to them but it's not that in my case. . .

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Spirocheta
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That's interesting, LymeCFID. I had the same one-sided weakness. (Weakness on both sides, but one side was much worse.) The migraines are on the same side as the weakness for me.

I'm a writer too, and I know exactly what you mean about vocabulary. People say, "Well, you're talking, you're making sense," but they have to measure it in terms of how we USED to be before the cognition difficulties.

Ditto on the creative ideas thing too. I still have them, but they are brief moments, and I can't grasp them and organize them enough in my mind to brainstorm and manipulate them. It's like the brain has lost flexibility. I have this terrible fear that I will not be able to learn anything new beyond the moment of my attack, and will have to simply rely on the knowledge I had built up for those 28 years of my life prior.

Something I've been starting to wonder about-- do the episodes of DP/DR and cognitive abilities seem to fluctuate throughout the day? I'm suspecting there may be an endocrine? connection to it.

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LymeCFIDSMCS
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Spirocheta,
Yes, exactly! All of that.
I have wondered about an endocrine connection too but for me, it's pretty much constant at this point. Late at night (my "best" time) I'll sometimes get these feelings that my old self might return, but they are fleeting and I can't hold them down and then they're gone.

The lack of brain flexibility definitely describes it for me. Part of how I used to write involved rapid association, or just letting the writing go where it wanted to go (and it did want to go somewhere!). Now it just feels like my brain won't move, like even doing a simple thing like brushing teeth -- beyond the regular exhaustion -- requires this massive mental effort of me acting like an enthusiastic coach and trying to get my brain to move through the steps.

The lack of ideas thing is so marked and so depressing. I'll just be on the internet dazed and staring at all of the headlines, thinking "wow, people have a lot of ideas" and being so impressed even at the most ridiculous ideas, because I can't seem to generate any now and it used to be so easy.

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gagamooppop
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Hopping in on this convo b/c I too have this symptom whatever it is. I don't even know what to call it...I just tell people nothing looks real and I feel like I'm in a perma daze.

I have only had clear brain days twice in 1.5 years now but oddly on those days I was extremely nauseous, so nauseous I could not even smell anything and had such terrible cramps that I could not even walk standing up straight.

No one has been able to pin point why that has happened to me but I'm working with a few people that have helped the rest of my body heal...

The top 10% of my head still needs work but I do feel physically much better then I've ever felt, if only now I could make brain connections...

It literally feels like all I need is one click to take place and I'll be back to who I am...

Also one of the worst things for me is how everyone tells me how great I look but have no clue how bananas I feel...

I guess all I can say is hang in there and keep searching until you find the right therapy for you. It'd be so nice if there was one magic pill/shot but alas seems like none exist.

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lyme in Putnam
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I live in it. Started to go away in November, crash again, low again. All I can say is im sorry and hope you get some relief soon. I feel identities, nothing no one important, and I am not depressed. Had a sleep study and it showed my sleep stages are messed up. Working on dreamless sleep somehow or less of the sagas in my head every night. Good luck. God sees all, thats the only thing I can stick to.

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He took u to it, He'll you through

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LymeCFIDSMCS
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Gaga I felt more "real" at least once when I was super nauseous (and very dizzy) too. For me it seemed like a migraine aura thing (sometimes I get the aura without the headache) so like something was shifting around in my brain. Very odd. Like a simultaneous feeling of feeling horrible but more oriented somehow.

Lyme in Putnam, they were giving ME/CFS patients this drug called Xyrem (and fibro pts) for awhile and I know it helps people go to the deeper levels of sleep (which most sleeping pills do not do). I wonder if that would help with what you're talking about if the sleep is related to all of this.

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LymeCFIDSMCS
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Well, wow, I was just reading the Wikipedia entry on "Depersonalization Disorder" and it mentions Lyme! "The symptoms are sometimes described by sufferers from neurological organic diseases, such as amyotrophic lateral sclerosis, Alzheimer's, multiple sclerosis (MS), neuroborreliosis (Lyme disease), etc., that directly affect brain tissue.[37] [38]"

http://en.wikipedia.org/wiki/Depersonalization_disorder

There seems to be a lot of overlap between derealization and depersonalization, and I'm not entirely sure which is which.

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lyme in Putnam
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Thanks. Sleep doc again next week. Either way, I understand hell. So sorry you're in it.

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He took u to it, He'll you through

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LSG Scott
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yes benzo meds did this to me as well bad stuff and some LLMDS give them out like candy a benzo search here will tell you alot

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LSG Scott

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Maya12
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I also have this issue constantly and hate it

Did anyone with this issue ever test for or treat heavy metals?

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Spirocheta
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This probably makes no sense, but worth throwing out there again. My cognitive functions don't seem to return, but in terms of feeling more "real/present," it happens to me when I get upset and have meltdowns/trigger emotional responses in myself (not adrenaline, though). You'd think the opposite would happen- more people get confused in highly-charged emotional situations.

LymeCFID- I had some kind of neurological attack on the 20th, and while I thought I was going to have a seizure, I felt clearer-headed again for a while. But it was when I felt awful too. I also don't feel any release of adrenaline when it happens (I'm sure it must be happening), so I'm not sure how it is working/whether that is related.

I think a lot of my DR/DP may have been anxiety-related, and seemed to have lessened once the shock of losing cognition subsided, but I still have those confused/overwhelmed moments out of the blue that can trigger it.

But that weird feeling late at night, about the old self returning, is uncanny. I get it after the sun sets, and right before bed. I'll start randomly researching things, getting more ideas, etc. It's happening to me less and less now, though. And I'm not sure if it was because I thought maybe the next day I'd wake up and be my old self again.

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LymeCFIDSMCS
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Spirocheta,
I used to have more of what you're describing, with intense emotions making me clearer. And that Wikipedia entry above actually says something about intense physical or emotional experiences being helpful.

I don't think this is weird at all as it's probably something in the brain like where stroke patients who can't speak can still sing.

Plus I think of language and meaning as having these overlays -- like with ideas or a feeling of meaning/solidity there is both the book definition of something ("that room is blue") and the emotions/gestalt of it ("i feel ___ in that room") so I think it's possible to get into that "room" via one door or another in the brain.

Of course, harnessing all of that is another story.

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CD57
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I sometimes think that this can be related to severe anxiety/stress also. I was under this at the time it appeared, and it never left. Most of the people I have talked to who have it, are similar types of people -- type A, highly intelligent, who were in stressful jobs or home lives or financial situations, etc.

I noticed that there was a study being done on the harmful effects of PTSD on the brain....like high stress hormones adrenaline and cortisol had done a number on the brain. I wonder if this is part of it.

I have similar late nights, Spirocheta, where it lifts slightly and that makes me not want to go to bed.

Has anyone asked their doc about this and the extreme stress connection? This condition, when you research it online, is often spoken of by people who were very anxious for other reasons/anxiety disorders. It is thought to be a protection mechanism by the brain.

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gagamooppop
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There is definitely something with the chemistry of the brain involved...too bad its so difficult to get into balance

Between the neurotoxins from the spirochetes and heavy metals and whatever else is left behind its tough to keep in balance

I've added in some meditation and yoga and seems to help but no major clarity yet...definitely a whole body picture in order to get better.

Getting better is my full time job...as I'm sure it is for many here. I notice when I take sam-e and b-12 spray occasionally I feel a little better.

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LymeCFIDSMCS
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"Stress" is kind of a hard call. Like with soldiers who have traumatic brain injuries AND PTSD, sometimes the symptoms overlap to huge degrees and it's hard to sort out. I don't think treating both simultaneously could hurt.

I do a ton of meditation but it hasn't helped these symptoms for me, which is frustrating, but I keep trying to chip away at it from all angles I can think of. Meditation does often help in some ways for soldiers with the dual conditions I just mentioned though, but then, resting the brain helps traumatic brain injury too (like with concussions, teenagers esp. are advised to just stop texting and being on computer for awhile to rest the brain and help it recover, so any reduction in stimulation could help with both angles).

And yes, I agree about getting the brain in balance. It's so confusing really. So much brain to deal with and trying to navigate with such a damaged brain!

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Kat1777
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I've been following this thread with great interest since this has been one of the first and hardest of the symptoms for me to deal with. Sometimes I just refer to it as brain fog, which I try to describe as going through life in a lack-of-sleep daze or as though I'm swimming under water.

That's close to what I feel most days, but there have been instances where I've felt like I was watching life from outside or above myself. Fortunately, that's not all the time for me, but very frustrating.

I will admit that there have been times during my suffering that I've wondered whether perhaps I really have died and that this is just some kind of punishment I'm living. Hopefully that makes sense since it sounds crazy even as I write it. [Smile]

I also have pronounced apathy or lack of emotion. I used to be a *very* emotional person who could cry at the drop of a hat or be filled with euphoria. Now I just feel flat--all the time.

I find it interesting that some of you relate this to stress because a lot of this arose when I was in the midst of a series of very harrowing life stresses. I think the lengthy duration of that stress contributed to my problems, the physical and mental.

That being said, the stress has been gone from my life for at least two years now and I feel no better, so that can't be the only reason. And I've had a thorough adrenal workup done as well. My results were completely normal, so that's not a contributing factor either.

I can deal with the pain, I can deal with the fatigue, but thinking that I might never be "me" again is more than I can bear to contemplate. Thank you for making me feel not so alone in this.

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CD57
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Yes it's very hard to deal with. I am unable to meditate because it doesn't allow you to be present.

Interesting about your normal adrenal workup Kat. Was it that way several years ago when this arose? My cortisol was sky-high when it first appeared. It just showed up one day on abx (zith and ceftin) and never left. I do think it has something to do with stress and blood flow to the brain also.

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Kat1777
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I don't know. When I was going through the stress, all I got from my doctors was anti-anxiety/depressants thrown at me. No one was willing to investigate a medical reason for my symptoms. So I did not have an adrenal panel until long after the stress had started abating. But I was tested via blood and saliva, and both were normal, so I know that's not an issue anymore, if it ever was.
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LymeCFIDSMCS
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CD57, I have actually gone on and off with meditation in part because of what you said and the style of meditation I do -- which involves thought labeling (so while trying to create presence, can actually sort of reinforce the detachment!) -- seems almost dangerous sometimes given how separate from my thoughts I already am, and how blank my mind already is! (like do I really need to clear my mind when it's just a field of unmoving sludge?).
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CD57
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Also I wonder if this could be related to CCSVI -- that blocked vein that was talked a lot about a couple of years ago? Some people did tx but gains didn't seem to last long. They did say that neurological sx seemed to have improved on it.
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norcal
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Hi all, I thought it would be good to offer encouragement regarding depersonalization.
I had this it was the worst thing I can ever imagine. I too am an artist,it left me "soul less" I could not create any ideas or even enjoy music or comedy or........ awful.
I am happy to report it can go away,did for me . Keep at treating and try to be peaceful with this,know it is possible to get yourself back.
Journaling my day was helpful when I was in the thick of it.
Make a meal for someone even if it takes all day(me).
I will send prayers for all that are still dealing with this horrible symptom.

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LymeCFIDSMCS
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Hi CD57, I did not realize Lyme patients were having the correction surgery for CCSVI (that's what you're talking about, right? The surgery to correct it?). It's discouraging to hear the gains didn't last, since they do seem to last in MS, right?

And Norcal, thank you for the encouragement. I'm curious how long you did treatment and for which TBDs and if any treatment in particular made a noticible change in this symptom.

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gagamooppop
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Great to hear norcal!! Gives us hope...
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norcal
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lymeCFIDSMCS, To answer your question,I just finished treating after three years.
Originally started with a different doc,mepron,malerone,tindamax,liver crashes...stop treatment for 6 months.
The worst of the mental issues started in 2010 fall when I started treatment for babesia again, new doc.
First abx Alinia,next Abab for 8 + months major herxes mental stuff during this period.
Got my mental function back starting Jan.2011 and slowly returned to pretty normal over the next year.
Continued to treat for lyme since then using clarithromicin,flagyl,bicillin injections,al complex,lots of physical stuff slowly abating until recently down to tinnitus and insomnia. This I can live with after the mental horrors,.praise God!

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lyme in Putnam
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God bless. Tired of pretending to be me. Soulless is the word.

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He took u to it, He'll you through

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Spirocheta
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It seems like this sensation arises either from extreme stress (psychological in origin), or in a type of organic damage to the brain from something. I'm assuming there is an overlap of the two which confounds things, because knowing that organic brain damage occurred would freak someone out as well.

I've noticed my DP/DR came with the sudden cognitive deficits, which could be psychological, or organic as well, from the same thing that caused the deficits. As someone who has waded through a bit of mental illness a decade ago, I can definitely say I never experienced DP/DR in any of those circumstances, which were were a combo of PTSD/depression. As a matter of fact, as soon as whatever struck my brain happened, any lingering PTSD-symptoms just disappeared.

I'm really worried that we are experiencing some kind of structural/organic damage to our brains from whatever is going on that is causing this.

My DP/DR has patterns in when it arises: in unfamiliar situations where I am overloaded with stimuli (this never happened prior to the cognitive deficits, which makes me think brain damage), and it cycles through the day. I wake up well. By the afternoon, I'm a bit shot. As the sun sets, without fail (I've tried this in different places, on different days), by the time 5 or 6 comes on, I have a DP/DR episode and a meltdown. Every day. After that, I am pretty good for the rest of the evening, and then get that productivity boost before bed, leading me to stay up late.

I suspect it is organic, but also has a link to my freaking out about cognitive losses and illness. I find if I take a low dose of Xanax, it not only alleviates the symptoms, but I suddenly feel in touch with my personality and get super productive until it wears off.

I usually take Xanax for insomnia, which is probably why the late night productivity is better. But it used to just knock me out. Ever since my mystery cognition issues episodes, it has changed its effect completely.

Anyone have a similar experience?

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CD57
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Yes, exactly the same with the benzos. I don't think it's brain damage but I don't know what it is. My doc says it's infection/inflammation.
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Spirocheta
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Oh, one more thing: Another hypothesis I'm having is that I cannot keep track of time anymore. Time seems to just fly by, all the time for me suddenly. I'm wondering if anyone else has this, because maybe this contributes to the DR/DP as well. Not feeling "in time" is a constantly jarring sensation that makes one feel out of reality.
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CD57
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yep.

i think for me it has something to do with the abx since it started on them. Honestly they havent done much and I think left me with this symptom.

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lyme in Putnam
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Had two days last week, more reality based, then as Friday went on, dp back so much ,so bad yesterday. When in reality based, mind filled with usual things, more of the me personality, when in other mode filled with things I would never think of, time is so screwed up, just in another pace. I know hormones are related, flushes neck and face, this whole month when period was due.

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He took u to it, He'll you through

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CD57
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One thing I was also told which I believe: I think the benzos are anti-inflammtory and possibly slightly immune suppressive, because I have taken them instead of pain killers for a massive headache, and they work.
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LymeCFIDSMCS
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Spirocheta, I mentioned the time thing in the original post at the top -- it's a terrible symptom for me too. It's just this odd feeling of being completely ungrounded so "time" exists outside of me, and seems really fast all of the time (I feel like I just wake up and go to sleep with nothing in between, which is mostly accurate but the time in between seems so short now).

I also feel like part of why I can't get into the plot of a TV show or movie now is a) it's confusing, and I keep wondering why people are doing the simple things they are doing and b) I can't just be "in time" as you said, so I can't get swept away by anything as I'm never "in" it. But it's like that with everything now.

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Spirocheta
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Haven't been around in a while because things are getting worse here on my end. The things that have improved are:

-Being back in time- at least being able to estimate and keep track of it again-- forget about PLACE, though. I can only deal with familiar places. New places are okay, but I get exhausted so fast in them because of the processing issues, I believe.
-Less sensitivity to sound than before (it no longer feels like someone punches me whenever I hear a loud noise.)
-Less photosensitivity

Before I had clearer thinking, but the cognitive processes could not engage, so I'd still have concentration, try and focus on something, and just hit a wall, like I couldn't. I had another attack last weekend, and now I have the characteristic "brain fog" (cannot think clearly), and things do not seem to be getting in at all, not even things I pay attention to.

The DR/DP stuff is gradually getting better, but I don't know if that is because I'm not as anxious anymore, either because I'm getting used to this, or part of my brain is wearing away where it lacks a certain kind of awareness.

I'm having trouble with TV shows that are under a half hour, or TV shows that I hadn't watched prior to the 12/28 incident. (Those I can tell what's going on.) I can't pay attention.

Anyone have eye issues? My eyes are getting so blurred all the time now, and worse when I am overstimulated or tired.

I have now become terrified that I have some kind of rapidly progressing dementia of some sort because all my tests are coming back normal, and I hope upon everything I don't.

How fast did everyone's symptoms progress to where they are now? Mine seem to be worsening week by week.

I think we need to explore this benzo connection. Is it because it makes us "feel" better and not notice? Is it anti-inflammatory? Or is it neurologically slowing us down, which is somehow helping? I try to talk to people about it, but because benzos have a bad rap and are controlled substances, I run into the problem of people using it as evidence this is a mental illness or that I am developing an addiction. But I feel like there is something chemical that is going on that might be helping with this.

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LymeCFIDSMCS
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I was just reading about benzos and pseudomonas aeruginosas infection, which can be opportunistic in immune compromise and are resistant to a lot of common antibiotics (I was looking through an old test that suggested I might have this and it was apparently overlooked by my doc, so reading up on it -- it does make me wonder if this could be another coinfection we get).

Benzos improved survival in a mouse study independent of their anti-anxiety (anxiolytic) properties -- but the researchers are not sure how.

J Burn Care Res. 2010 Jan-Feb;31(1):1-12. doi: 10.1097/BCR.0b013e3181cb8e82.

Mice treated with a benzodiazepine had an improved survival rate following Pseudomonas aeruginosa infection.

Dugan AL, Gregerson KA, Neely A, Gardner J, Noel GJ, Babcock GF, Horseman ND.
Source
Department of Research, Shriners Hospital Cincinnati, Ohio, USA.

Abstract
Psychological stress has a high incidence after burn injury, therefore, anxiolytic drugs are often prescribed. Unfortunately, to date, no burn study has investigated the effects of anxiolytic drugs on the ability to fight infection.

This study was undertaken to determine if psychological stress, anxiety-modulating drugs, or both, alter survival following an infection. On day 0, 7-week-old male C57Bl/6 mice either received a 15% full-thickness flame burn or were sham treated (anesthesia and shaved), whereas controls received no treatment.

Mice received midazolam (1 mg/kg intraperitoneally) or saline daily and were stressed by exposure to rat in a guinea pig cage or placed in an empty cage for 1 hour a day, beginning on postburn day 1. For the survival experiments, mice either received bacteria after 2 or 8 consecutive days of predator exposure and drug treatment, which continued daily for 7 days after inoculation.

In a separate set of experiments, after eight daily injections of midazolam, mice were given lipopolysaccharide, bacteria, or saline and were killed 12 hours later. Mice that received midazolam had improved survival rates when compared with their saline-treated counterparts, and the protective effect was more significant the more days they received the drug.

For most of the cytokines, the bacteria-induced increase was significantly attenuated by midazolam as was the amount of bacteria in the liver. The protective effect seems to be independent of the drug's anxiolytic activity as there were no significant differences in survival between the predator-stressed and the nonstressed mice. The mechanisms responsible for the protective effect remain to be elucidated.

PMID: 20061831 [PubMed - indexed for MEDLINE]

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Robin123
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Spirocheta, re eye issues, I respond beautifully to drinking mangosteen juice - stops all Lyme eye symptoms for me, so you might give that a try.

Again, I want to say, for me, the sense that I was far away from everything, as well as no sense of time passing, both ended when I went on Armour thyroid - I tested low in T3, regular for TSH.

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Catgirl
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I used to have this. I feel for everyone here who is or has gone through it. I'm with Cozynana on this one. Treating parasites and babs took it away for me.

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--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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AuntyLynn
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For those of you with neurological symptoms (like depersonalisation, time warp, panic attacks, and general "brain fog") please be sure to look at this PA psychiatrist's website on Lyme.

http://www.thehumansideoflyme.net/

Treat the Lyme - aggressively - to alleviate the effects of this ecephalitic infection.

I would also try curcumin (tumeric) and coconut oil or fish oil right away, to help reduce the inflammation. My Mom has neuro Lyme.

May God Bless ~

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gagamooppop
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Not sure how to say this since its unfortunate we have this symptom but here goes...

I like that there's a thread discussing this bc it is really really difficult to go on everyday feeling like this...its reassuring to see people have gotten better and thanks to the tips from those who have gotten better.

I can not wait to 'wake up' from this symptom...

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Spirocheta
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gagamooppop- I agree! It's terrible that we're all suffering from it, but it's good to have other people who know EXACTLY what we're talking about. It is so hard trying to explain it to a person who never had the difficulties.

I tried to explain the difference between just regular "brain fog" and the cognitive crashes to my parents.

BRAIN FOG: You try and read something after you've been awake for 2 days and are drunk, and you know you can read it with much effort, but it's so hazy. But you can do it.

COGNITIVE: You wake up from a rested night's sleep, open a book, and it's in Chinese, with a few English words. But you could read it the night before.

I now have BOTH. I noticed the blurred thinking/brain fog-type stuff has started to increase as my Lyme symptoms (knee and leg pain, nerve pain), began to increase as well. The Lyme symptoms had been gone a month after going off ABs, and are now coming back.

The benzos don't seem to be working as well anymore. [Frown] But I did hear that they eventually lose their effectiveness.

I have that same sensation every morning- I keep hoping to just "wake up" from it. But I can't remember what it was like to think the old way anymore, and it's only been 2 months!

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gagamooppop
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Anytime is too long to feel like this...everyday for 1.5 years now...its unreal...literally...hah hah.

It's true...I have tried to explain to people bc to everyone I 'look great'...I've tried over and over to explain and again when I'm asked 'how are you feeling what's going on' and say 'same symptom' people still don't get it...

Just venting a little but its ok...you really can't understand it unless you experience it unfortunately and I wouldn't wish this upon my worst enemy.

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