I'm looking for people's opinions and experience about whether derealization is more of a babesia symptom or a lyme symptom? Derealization is that spacey, unreal, detatched feeling, like you are dreaming or underwater, or like you have a huge glass bubble over your head separating you from reality. If you had this, did you get better with treatment, and if so, was it babesia treatment or lyme treatment that helped it? Thanks! -karen
Posted by NMN (Member # 11007) on :
Hi Karen....I don't know if I have Babesia but I dont think I do. Dr B says its deep brain fog is very common with Bart.
Bart is my major problem I feel although lyme can cause brain fog also. But I can say one thing....My head cleared for the first time after my second month of Cipro (for Bart) and stayed clear for 4 months but came back whilst on doxy.
So for me the brain fog is Bart and I intend to retreat it properly when I see Dr H in NY next month.
Absolutely cruel symptom....worst thing for me. You just couldn't make it up!!
I think these diseases came straight from hell!! I intend to send them back.
It will clear with the right treatment.
Posted by disturbedme (Member # 12346) on :
I have this as well. But I have no idea if it's actually from lyme or a co-infection or both...
Mine has gotten better. And it started getting better after lyme and Bart treatment. Though I believe neither are gone yet as I still have symptoms of them. I also have Babesia symptoms.
Posted by Keebler (Member # 12673) on :
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Brain Fog is very common with lyme and other tick-borne infections.
Part of that may be the brain's heavy theta brain waves vs. alpha. In 3 QEEG's it showed that my brain had a very hard time achieving that focus, alert but calm state.
The load of toxins with lyme would make it hard for anyone to have a tip-top awake brain, too. The body and brain have more urgent matters than helping us feel awake.
I shy away from using the term "derealization" as it is linked with Dissociative Disorders and far too many ignorant doctors have lumped many lyme symptoms in psychological category.
Although I have this near constant overwhelming disbelief, like this just can't be real or I can't wake up all the way, I'd love to make this stuff not real anymore.
Some of the symptoms you describe could be related to inner and middle ear balance systems.
Avoiding gluten helps me a lot.
(I've not really been on a lyme protocol and have not yet figured out how to fix this on my own, though. I do feel less spacey when I take allicin - but it makes my ears ring more. Others don't get this effect though.)
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Posted by CherylSue (Member # 13077) on :
When I initially came down with this undiagnosed illness, I certainly had this. I remember trying to watch the movie, The Sixth Sense, definitely a wrong choice. I felt like a zombie, and thought I was more dead than alive.
It eventually got better when I went into remission. I relapsed a few years later. recovered, and relapsed again. Here I am.
CherylSue
Posted by cs (Member # 15270) on :
Thanks for the comments everyone, I appreciate it! I have always considered the derealization my worst symptom, because it is just such a completely disturbing state of mind, not feeling like you are connecting with anything around you. I had always called it "brain fog", way before I ever got my lyme diagnosis, but it seems like in the lyme world the term "brain fog" is used to describe more general cognitive issues and trouble thinking, not necessarily including derealization as a symptom. I have all the other weird cognitive slow-thinking stuff also, but don't know what to call this specific symptom other than derealization.
I tested negative for bart, but had a mild positive for babs and am currently on treatment for both that and lyme. My doc said that a later round of treatment will cover babs in case I have that also. I'm just hoping that this symptom goes away soon, I have been this way for over 15 years now, too much. -karen
Posted by Tracy9 (Member # 7521) on :
Do you have anxiety with this? In the past when I have had some bouts with anxiety, I felt this way, but it went away with the anxiety.
I felt this way when I was on Mepron for babs, too.
Posted by cs (Member # 15270) on :
No, anxiety has never been a problem really, a few of the folks in my local lyme group say they have had this symptom as part of the lyme, and one thinks it is a babesia symptom, so am wondering what other's experience with it is. Thanks! -karen
Posted by METALLlC BLUE (Member # 6628) on :
Derealization is the correct term, though it's caused by an underlying medical illness, in this case Lyme, Bartonella, or perhaps something else.
It would be wise to investigate with Fry labs. Treatments aimed at quickly crossing the blood brain barrier might be of value.
Posted by Tracy9 (Member # 7521) on :
Well it does sound like a symptom of Babs, then, according to everything written here.
Did you check Fuzzy Slipper's posts on Babs and Bart symptoms? Excellent summary.
Posted by Robin123 (Member # 9197) on :
I have Lyme with no co's. So I'm a vote for Lyme-only spaciness.
Oddly enough, it's a homeopathic remedy, called pusatilla, that I'm now taking nightly (one pellet), which is calming my mind and making me feel more present.
Posted by Clarissa (Member # 4715) on :
I had those exact feelings while being treated for Bart. I didn't have that symptom before to any extreme degree. I had more the anxiety/ocd/agitation part of Bart but when I began treatment, I felt like I was floating above my body.
My LLMD called it depersonalization...like you're not in the room but watching the people as if they're in a movie and you're totally detached even though you're sitting right next to them.
It was very scary and I was relieved when that symptom passed so I totally empathize with you.
Brain fog, on the other hand, I believe to be a hallmark of Babesia. I never had brain fog, memory loss, word search problems. I think brain fog and depersonalization are two separate symptoms.
Maybe you shouldn't rule out Bart...yet.
[ 21. May 2008, 08:46 PM: Message edited by: Clarissa ]
Posted by peter j (Member # 11825) on :
Clarissa: interesting. I've also got this symptom in a much stronger sense when I used minocycline in high doses. I didn't have it in a extreme degree neither until that. What abx were you using when you felt those symptoms?
I get the same feelings when I have a high fever with 'normal illnesses' as well.
Posted by SmurfyMom (Member # 13688) on :
I've done this for years and it's always spooked me. Makes me think that I'm surely about to die and I am now looking at the family (or who/whatever) around me the way it'll be when I'm not here anymore.
Then for a split second I might even wonder if I AM here anymore. Maybe I have already died? Or maybe I just *think* I am here, but really I am in another place (town, maybe, or room...)
Drives me bonkers, but you all are pretty much the first people I've ever shared with. I've had this problem since jr high at least but immediately recognized it as possible mental health problem.
So, I did the only thing I thought safe...kept my mouth shut so no one would think I was a complete whack-job.
Now I know better and I must say I'm excited to think that MAYBE, just MAYBE that will go away at some point. =)
WackySmurf
Posted by jocus20 (Member # 11576) on :
Ive had this symptom everyday for over 3 years now. For me it was one of my first symptoms to appear.
I really have no clue what infection causes it but its definately the worst lyme symptom in my opinion. I also think the vision plays a part in the derealization.
However, it does get better at times and doesnt bother me too much. I wish i had some answers for you but i can only just sympathize with you.
I wish there was a more clear cut answer.
Goodluck, Joe
Posted by savebabe (Member # 9847) on :
Bart and lyme caused this symptom for me. Have you tried hitting lyme bart and babs at the same time? I found that treating all my infections at the same time was the most beneficial.
Posted by Clarissa (Member # 4715) on :
Peter J,
I think mino does hit the Bart. It won't kill it but if used in conjuction with Rifampin or Levaquin, it will kill Bart (or put it in remission)...whatever the politically correct verbiage is.
I NEVER had that depersonalization with Lyme treatment (which lasted 18 mos).
With Bart treatment, it was truly surreal. And yes, like Smurf, I felt so crazy that I was scared to even mention it to my LLMD.
When I did, he was not surprised AT ALL (he too, being a Bartonella recoverer, knew exactly what I was talking about).
I vowed, that if I made it through the Bart treatment, that I would never partake in recreational drugs again because I never wanted to experience this "stoned-like" feeling again.
Ironically, when I chose to smoke...mj, it was cool, groovy and fun but when I did NOT choose to feel that way, it was terrifying.
Such is life...but it DOES go away! No more of that for me, thank goodness but I will always believe it was Bartonella!
Best to all,
Posted by ByronSBell 2007 (Member # 11496) on :
Lyme and Bartonella.
Posted by EyeBob (Member # 12572) on :
There's been so much written and commented on regarding brain fog (not depersonalization) that it seems as though any and all of the TBIs can cause it.
Am I correct in this?
BT
Posted by Peacesoul (Member # 13709) on :
Brain fog and derealization is also associated with candida.
Posted by Clarissa (Member # 4715) on :
Depersonalization (or depersonalisation: is an 'alteration' in the perception or experience of the self so that one feels 'detached' from, and as if one is an 'outside' observer of, one's mental processes or body.[1]
It can be considered desirable, such as in the use of recreational drugs, but it usually refers to the severe form found in anxiety and, in the most intense case, panic attacks.
A sufferer feels that he or she has changed and the world has become less real, vague, dreamlike, or lacking in significance. It can sometimes be a rather disturbing experience, since many feel that indeed, they are living in a "dream."
That sums up what I experienced! Depersonalization.
Posted by cs (Member # 15270) on :
Wow, thanks everyone for all your stories, it is helpful to know that a lot of people have experienced this, although sad that it hasn't gone away completely for a lot of people. I have a feeling this is one of those symptoms that people just don't talk about much, just because it sounds so crazy, but maybe it is more common than we realize. And interesting that so many of you have it as a bartonella symptom - I will definitely push my doc to treat bartonella next then, maybe that is the problem.
Jocus, your name sounds familiar - were you on the dp/dr board awhile back by any chance? Sounds like there were a number of us posting on there who ended up having lyme, there probably are more I suspect. -karen
Posted by jocus20 (Member # 11576) on :
Hey Karen,
I posted a few times on there a while back. I suggested to some people that lyme or other infections could be the culprit since most people were searching for answers or given diagnosis of cfs and things of that nature.
Well, basically all i got was negative responses and i never came back. I just wanted to help people but sadly many people listen way too much to drs and psychologists and dont think for them selves or take others advice.
I agree that dr/dp can be caused by anxiety and panic but in suituational circumstances. Not all the time and including a host of other symptoms. Anyways, I hope there was some people that i got through to on the dp/dr forum and they decided to seek out an answer. After i posted and got basically shunned for voicing my opinion i never returned.
Joe
Posted by Alv (Member # 15192) on :
Hey CS , I completly agree with Clarisa!
I have been treating bart since in the begining.
I have been through hell! BRAIN swelling on top of my head and would feel like exsploding.
I was terrible sick with bart.Still have it.
I had all coinfections -but the more I treat bart the more I come back to reality .Like I am down to earth and touching the ground and do not jump off my skin anymore .
Yes I feel like I belong on 3 dimessions.Does it make sense ???
Now I have brain head aches and I am no longer anxious and ,agitated and back to the ground and not feeling as I am floating in and out my body and am sitting next to people.
it is scary as I felt the changes on me and I shut my mouth years ago as I felt that people would call me nuts and I was "the perfect role model person on behave"
The only thing I could not handle was the crying -I would cry easy even I tried to do the best to not show that in front of people.
I knew something was wrong with me..No body could belive me -and I thought I might have mercury poisoning as it matched my symtoms..
When treating bart with the drugs-I would tell you I feelt things going on in my brain and honestly I would never ever wish anybody going through what I went .But I knew it was the bugs and I was hanging and hiding myself from the others.
It lasted 1 year herxing my brains out from BART!
I could not handle 300mg Rifampin.
NOw a year later I am on LEVAQUIN , RIFAMPNIN AND ZITHROMAX.
I do nto beilive that anybody else has treated bart longer than I do.
I know I have henselae , quintata and BLO.ALL THREE of them EVERYWHERE.
I still am fighting it with any method out there, Antibiotics , homepathic , herbs and rife...!
BUt thank God I am back in my skin!
I feel all things coming back together where they belong.
BART is a nasty biest!
FYI I had all coinfections that exist! Now I am down to 3 including lyme !
Posted by Tracy9 (Member # 7521) on :
SmurfyMom, What you describe sounds like panic attacks. YOu might try some Bach's rescue remedy, a homeopathic spray or drops that can help many people with anxiety, panic, or just plain old stress.
Posted by bernieb4 (Member # 14654) on :
I firmly believe that bartonella is the most strongly linked to depersonalization, cognitive shortcomings, disconnectedness and all the terrible psychotic symptoms associated with the TBD's.
I do not doubt that babesia and Lyme play a roll too, but I have read a few medical journal case studies about people with bartonella who "completely changed" after being infected with it: their personalities took a complete 180, they became more agressive, more irritable, became more insomniac, etc., etc.
I have all of the above brain problems and have since being bitten by 5 or so ticks nearly a year ago. They are my worst symptoms and I attribute them to bartonella, mostly due to my distinctive bart-rash and the fact that I've done months of good Lyme abx. Plus, I don't believe I have babesia -- I don't have air hunger, headaches, or sweats, which seem to be definitive of babesia.
I would treat bartonella. I'm going to continue with Rifampin and Minocycline for a month. Then I'm planning on trying IV Rocephin or IV Zith or IV Doxy or oral Levaquin...they frighten me some.
Posted by Carol in PA (Member # 5338) on :
A deficiency of Vitamin B6 can cause feelings of depersonalization and derealization.
I've been reading up about Vitamins B6 and B12 as related to neuropathy.
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