posted
I know there have been other posts about this topic but i was wondering how many people here have the derealization or disconnected feeling all the time.
For me this was one of my first symptoms to appear and it never went away. There are moments or days where it isnt quite as bad but has been with me everyday for over 3 yrs.
It seems like most people will get this symptom intermittently and have constant pain. For me its the other way around. I have it all the time and the pain comes and goes.
Who else has the same type of thing? Anyone have any insight as to why this may be? Anything helped you with the derealization?
You pretty much took the words right out of my mouth, this has been my number one symptom since my onset 3 years ago and still the hardest symptom to explain.
Like you said, many people say their fog comes and goes. However mine is also 24/7 and has been for 3 years. It feels like im just not quite "there" and my head is full of cotton.
The derealization scares me, and it scares me even more that its never let up. It makes me wonder if it will let up, an since I just finished 3 weeks of antibiotics it has gotten worse.
I really have yet to find anything that cracks this feeling, id give anything to have it lighten up even just a little. Like you said somedays its a little better and I almost feel "normal" but I still have yet to feel completely attached to the earth and all "there" if you know what I mean, by what you said I think you do.
This symptom came right away with my sudden onset and has yet to ever let up. I was just recently diagnosed with Lyme though and am doing antibiotics, but so far they have only worsened the symptom, hopefully in time they may lift it.
But you are not alone, this is a horrible symptom and id give anything to have a "clear" head for just one day.
- Trevor
Posts: 59 | From Arizona | Registered: May 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I'm not sure if I feel what you guys feel or not, but if I do, I would say it's always there, just sometimes better, sometimes worse.
Actually, maybe sometimes it is gone. I don't know....can't reallly remember.
For me, it's like a feeling that I can link up with my eyes too. You know that feeling where your eyes fall asleep and you just "stare off into space" and you're like "gone" for a minute? And your eyes aren't focused?
Sometimes I feel like that feeling in the eyes is actually in my brain. And I feel like even though I can read and look at people, I am still not focused on them....in my brain, maybe. It feels like it's my brain messing up, not the eyes.
And it all leaves me with this general impression of not really being in the room, or when someone is talking directly to me, I am just sort of staring at them and trying to talk like a normal person would, even though I don't really feel "present".
I am always paranoid, if my husband and I are out to dinner with people, that I look weird, because I feel weird.
I am worried that I look zoned or dazed. I always ask him, "Do I look okay?" Sometimes I feel like my eyes must look defocused or glazed over.
But half the time I think it is just how I "feel" too.
I don't know if that is depersonalization or not. I just know I feel WEIRD.....
And when I drink coffee to wake up, sometimes I feel like it is worse. I will have more energy, but feel even more glazed over and disconnected.
I think the only way to get rid of it is to treat your tick infections aggressively! Honestly, mine used to be a LOT worse, and as I have steadily improved, that symptom has gotten better too.
It is not completely gone yet, but as I get better, I feel like it will continue to go away. Sometimes when it gets better, the line between that and just being tired gets blurred.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Also, I assume you are both guys.....
Just to let you know, I once knew another guy who had lyme and babesia, and ALWAYS complained about this. I think it was one of his worst symptoms, along with cognitive. But his energy was not terrible, and he didn't have a lot of muscle/joint problems at all.
He basically said he didn't want to date anyone, because he felt like he was so disconnected from himself that he didn't think he could "feel" anything towards someone. Does that make sense?
Like, he wouldn't even be able to know the person he was with., or feel like he was personally connecting with them because he felt so unreal, even in terms of getting "intimate."
Thought that was interesting. Mine has never gotten so bad I felt like I couldn't get to know someone, because it's only bad in spurts, but his was so severe it was always there.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
This has been just one of the awful symptoms I also had for more than 3 years. It is almost gone for me now thankfully.
The cause is not yet clear to me and may never be but a few different meds. did help. I can pinpoint those.
The first combination that helped was Rifampin in addition to Minocycline.
The most recent combination that has been helpful with this is Rifampin plus Levaquin.
Of course it couldn't be that clear cut. Despite buckets of Mepron w/Zith and art followed by months of Malarone, my new LLMD suspected I still had babesia.
I did Lariam and following with Primaquine. This seems to be cleaning up.
Hope this helps as this symptom is pure he//.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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posted
Yes, I have had derealization for over 15 years. It is almost impossible to explain to those who don't understand. It is by far my most dreadful symptom.
Posts: 636 | From Saratoga County, NY | Registered: Apr 2008
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posted
Yay, I'm not alone. No, seriously, I'm sorry you all feel this way, but wow, it's good to know I'm not the only one!
This is giving me such problems. This was my first symptom. I'd be sitting in a board meeting and feel like I'm not really there. I feel like I'm in an altered state of consciousness 24/7. And I'm sick of it.
Moreover, Hoosiers, what you're saying is EXACTLY WHAT I FEEL. My eyes are always "staring". It is so hard to move my eyes from one place to another--and I can tell it's something going on in my brain.
It makes me scared to drive because I'm not sure I trust my eyes to move fast enough, or my brain to believe it's real enough. I'm an attorney in solo practice and this whole thing has taken a HUGE wack out of my ability to work. Who wants a lawyer that can't concentrate and feels like she's not really there?
I also experience very few joint pains, but lots of intermittent light, sound and touch sensitivity that can be excrutiating (especially as a mother of three young kids).
I have found the depersonalization and staring to abate with treatment, but it also comes back with each relapse at full force.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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posted
Thanks for the replies everybody...its good to know im not the only one.
All of your descriptions of this symptoms are very accurate.
Hoosiers, what you explained is how i feel as well. Thats kinda what i mean by the disconnectedness...my brain and vision just dont work together ccorrectly and i feel spacy or like ive been drugged.
It also feels like things are very far away or are not happening around me...thats the derealization.
I do think my vision plays a part in it as well. i have alot of vision problems and that only makes the drugged feeling worse.
It is by far my worst symptom and what keeps me from keeping a job or finishing up school. Its also what keeps me from being social, going out with friends and meeting new people.
Hope we all find some answers. Im going to start treating coinfections much more agressively soon.
posted
Its very helpful to read this from other people because the feeling of "not being there" completely is one of those "this must be me" type of symptoms. I can blame it on loads of other things. Its the same with the staring thing...
I was pretty much symptom free in the fall and this was gone so I think it does go away with proper treatment.
Everyone feel better!!!!
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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posted
This was one of my first symptoms as well, along with a suddenly roaming eye, and arthritic feet, back in the mid 70's when I was a kid, but being a kid and growing up with it, I never could or wanted to share it because I didn't understand it and was afraid, after awhile to share it.
But now I know much more about it.
Recently saw Matthew Perry in a movie called "Numb" a so awesome story about someone with depersonalization. It's a comedy so very beneficial to watch and really shows how you/we are not alone!
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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I've seen this term, derealization. floating about a lot lately.
I caution everyone here to be very cautious when using that term around regular doctors - and be careful not to have that in your medical chart. It is not precise enough and might be easily misconstrued.
It means different things to different people and is not usually connected as a result of an infection.
My first thought (as someone with chronic vertigo) is that, "well, my sensory stuff is all messed up, of course, my sense of realty is shaky, too." Geez, even when a normally healthy person gets the flu, their senses are as if in a warped movie.
One of the vestibular dx from platform tests determined that I have "severe sensory dysfunction." My guess is that many lyme patients are in that category but it's very hard to explain or pin-point.
The term, derealization, does have a psychological connotation that few doctors would go beyond (such as exploring infection as cause), although there is mention of a vestibular connection.
Ah, hah! - I thought so.
With all the inner ear/balance stuff . . . all the toxins . . . all the ways lyme & TBD affect brain cells, heart function, liver clearance . . .well, we might just have to realize that reality may appear a bit shaky along this road.
But, I would NOT call it derealization in front of most doctors. They just would not get it and too many lyme patients already are tossed into a psychological diagnosis and left there - rather than being assessed from an neurological and infectious perspective.
And, in reading over this, parts of it can explain a lot about how a toxic infection can affect our senses, our perception and our integration of signals.
One particular caution (as panic attack is mentioned below) is that panic attack can be caused by lyme. ( See research by Fallon,B. and Nields, J. )
There are some ILADS researchers who have written eloquently on the neurological effects of lyme. Here (menu up and over to the left, see medical abstracts . . . the Lyme Disease Association link . . . ILADS ( www.ilads.org - see articles and presentations).
The detachment of derealization can be described as an immaterial substance that separates a person from the outside world, such as a sensory fog, a pane of glass, or a veil.
Individuals may complain what they see lacks vividness and emotional colouring. Emotional response to visual recognition of loved ones may be significantly reduced.
Feelings of d�j� vu or jamais vu are common. Familiar places may look alien, bizarre, and surreal. Such perceptual abnormalitites may also extend to the senses of hearing, taste, and smell.
Another symptom of this condition can be the constant worrying or strange thoughts that people find hard to switch off.
Derealization builds up slowly with the underlying anxiety, but shows itself suddenly, often after a panic attack, and is then difficult or impossible to ignore until the sufferer receives treatment.
This type of anxiety can be crippling to the sufferer and may lead to avoidance behaviour. Sufferers may experience great concern over the cause of their derealization.
It is often difficult to accept that such a disturbing symptom is simply a result of anxiety, and the individual may often think that the cause must be something more serious. This can in turn cause more anxiety and worsen the derealization.
Derealization (DR) is an alteration in the perception or experience of the external world so that it seems strange or unreal. Other symptoms are feeling as though one's environment is lacking in spontaneity, emotional colouring and depth. [1]
It is a dissociative symptom of many conditions, such as psychiatric and neurological disorders, and not a standalone disorder. It is also a transient side effect of acute drug intoxication, sleep deprivation and stress.
Depersonalization is a subjective experience of unreality in one's sense of self, while derealization is unreality of the outside world.
Depersonalization and derealization are often used interchangeably, although evidence suggests they have distinct neurobiological mechanisms.
Chronic derealization may be caused by occipital-temporal dysfunction.[2]
These symptoms are common in the population, with a lifetime prevalence of up to 74% and between 31-66% at the time of a traumatic event.[3]
Causes
Derealization can accompany the neurological conditions of epilepsy, migraine, and mild head injury.[4]
There is a similarity between visual hypoemotionality, a reduced emotional response to viewed objects, and derealization.
This suggests a disruption of the process by means of which perception becomes emotionally coloured. This qualitative change in the experiencing of perception may lead to the reports of anything viewed being unreal or detached.[2]
Derealization can also be caused by vestibular disorders such as labyrinthitis and vestibular neuronitis because the brain is receiving mixed signals from the vestibular nerves due to damage or infection, and so causes the brain to function slower and create feelings of unreality.
Cannabis, hallucinogens, antidepressants and nicotine can all produce feelings resembling derealization, particularly when taken to excess. It can also result from alcohol or benzodiazepine withdrawal.
Derealization can also be a symptom of severe sleep disorders, mental disorders such as depersonalization disorder, borderline personality disorder, bipolar disorder, schizophrenia, and anxiety disorders.[5]
See also:
Post-traumatic stress disorder
Borderline personality disorder
Panic attack
Dissociation
Bad trip
Existential crisis
Fugue state
Reality
Solipsism
Brain in a vat - In philosophy, the brain in a vat is any of a variety of thought experiments intended to draw out certain features of our ideas of knowledge, reality, truth, mind, and meaning
And just a thought: While successful treatment of infection and support of the liver are vital, Qi Gong or Tai Chi may be very helpful to help with sensory integration and balance.
Learning a musical instrument, too, can help the brain in many ways. There is a program that teaches harp to MS patients. They have tons of research and great success.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Painted turtle, yes LLMDs should know and they do. You are correct in that patients should be able to tell it like it is.
However, a chart may get into many hands in the future. Others may latch onto a term such as this and not get it. So, in listing symptoms that go into a file, further clarification might help - or using terms that can not come back to haunt a patient.
For instance, with sound-triggered seizures, my neurotologist told me they were "pseudo-siezures" since the audio overload triggered the brain. While he said the result was the same, the fact they started with the ears made them "pseudo."
Well, as a doctor with neuro training, he should have known better. Some time later, in an ER - I was turned away because they said my charts said my seizures were made-up, as implied in the term "pseudo" -
This happened several times and no doctor for 6 years would treat me seriously (although lyme is not considered as even exiting in my state and that was part of it).
So, while my inner ear doctor got it (and actually was the one to tell me to get tested for lyme) . . . his casual use of a term in my file caused inferior medical treatment from others who had access to my file.
And, interestingly, while all the regular neurologist's EEGs did not capture a place in the brain connected to seizures . . . Three other specialist's QEEGs did capture the exact place. But the EEGs and the mis-used term "pseudo" will be in my chart forever - regardless of more recent notes from other doctors.
With so much on computers now, we have to be careful about what's in a chart. The eyes that scan that in the future may not have a full understanding. Treatment can be misguided in such cases.
posted
Yes Keebler, I hear you. I've got some unfortunate similarities w/regard to all that in my medical charts that make mistaken impressions upon those who are otherwise not well informed.
Even so, the stigma has got to stop. Even if it were purely psychological in nature (which I know it's not!)
And that's the hardest battle we fight, having been misunderstood for so long.
posted
I had this on and off for my first 5 months of un-diagnosed LD. It was mostly all the time and then went away completely. I was afraid to leave the house for much of the 5 months.
I have the feeling it is Bartonella related. I also had horrible anxiety and panic attacks that went along with it.
I do not know if starting some good vitamins helped but around the same time I started taking vitamins this symptom left and I started to feel normal again all the time.
I was anorexic for the first 5 months and I think my body was starved for certain vitamins and nutrients.
It is almost impossible to describe to another person how horrible my symptoms were. I felt like someone had taken my normal brain and I could not get back to feeling like my normal self.
You are not alone and I feel for anyone having to deal with this symptom.
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posted
When I am at "my sickest" - total brain inflamation etc
I get a sensation that I can only describe as "everything looks wrong." My vision is ok, it's just the perception of how I see things is altered...
This is how I describe it, but I don't know if anyone would understand (except my husband)
for example, has anyone ever noticed that if you watch tv they use a certain kind of filming technique and movies they use another.
so, once (? 2003) I watched the MTV movie awards with my husband. They used a different film technique (the kind associated with actual movies) and it was odd to see on tv - it looked wrong.
Or in the 90's the show ER tried to do a "documentary" style episode and they used a different filming technique from the regular episodes - it just looked odd
So that's how I find my perception sometimes (fortunately it's mostly abated) I am viewing things as through the wrong "kind of film" or a different lens - everything just looks "wrong"
I tried to explain to my LLMD who found it fascinating but had never heard of such altered perception...
When this symptom pops up though - I say "uh -oh" - it's a bad sign for me
I haven't had it in years though...
Anyone else had anything like this. I'm not sure if this is what you guys are talking about or not...
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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I always thought it had somthing to do with low blood sugar.
Recently I found out I had b12 deficiency. I started taking Jarrow's 5000 mcg sublingal. Sometimes I put 3 at a time under my tongue.
The b12 has helped alot with the foggy, disconnected feeling. It's worth a try. YOu can order it on Iherb for relativlely cheap.
Posts: 23 | From n.y. | Registered: Nov 2007
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bettyg
Unregistered
posted
i have not read any replies on this.
did you see the great PUBLIC HEALTH ALERT NEWSLETTER and special feature tincup posted here in medical on this ISSUE by Dr. Bransfield, sp??
anyway, i copied the whole thing over here, please check it out; i learned so much about myself!!!
quote:Originally posted by Hoosiers51: Also, I assume you are both guys.....
Just to let you know, I once knew another guy who had lyme and babesia, and ALWAYS complained about this. I think it was one of his worst symptoms, along with cognitive. But his energy was not terrible, and he didn't have a lot of muscle/joint problems at all.
He basically said he didn't want to date anyone, because he felt like he was so disconnected from himself that he didn't think he could "feel" anything towards someone. Does that make sense?
Like, he wouldn't even be able to know the person he was with., or feel like he was personally connecting with them because he felt so unreal, even in terms of getting "intimate."
Thought that was interesting. Mine has never gotten so bad I felt like I couldn't get to know someone, because it's only bad in spurts, but his was so severe it was always there.
Thanks for posting this Hoosiers51. I've got the exact same thing. I can't feel anything for anyone around me, but it goes beyond that, I don't feel angry, awake, sad, tired, hungry, full, cold, warm. I feel practically nothing. Do you know where he's been tested? And how is he now? Has he got any better?
Posts: 275 | From Home | Registered: May 2007
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
My husband complained of this for over 18 months it was so bad I did not know this man anymore, his cognetive stuff was terrible.
He was diagnosed with Bart in addition to Lyme in February after changing LLMD's and has been on treatment with levaquin for 3 months and he is totally back to who he was mentally, he says its like someone switched the light on.
Yea it seems like most people say this is bart related but im not for sure any one really knows.
I too dont really mention this symptom to any dr but my lyme dr. Many people will say that this is anxiety related which i know is bs. I knoe that circumstantial anxiety and panic attacks can cause this type of symptom but not something that last for 3 1/2 yrs. Plus it has alot to do with my vision and not just cognition.
I just hope it goes away eventually for all of us. Its one of the most crazy disturbing symptoms.
posted
By the way, i just watched that movie Numb. It was pretty good. definately can relate to it.
Sadly many people with deralization are basically told its phsycosematic and are put on all sorts of drugs which dont work just like in the movie.
Ive even been to the depersonalization/dereallization forum before and tryed to suggest their symptoms were posiible lyme related or some sort of tbi. Some people sort of listened but almost everybody got angry at my suggestion and eventually the people that were curious were misled by the others.
posted
Yeah, I imagine some people are so married to their diagnosis, just from all the tribulation to have experienced through it, that they might get angry at being challenged, after all they've gone through. Even as angry as one w/lyme would get if someone suggested we had other than lyme.
I do think that depersonalization/derealization has many causes and from what I understand it is based in the general anxiety category. We all know lyme causes severe anxiety in some due to how it hits the central nervous system and all the perceptual due to visual and sound distortions/challenges/sensitivities, etc.
I did love that movie Numb, I don't care the cause/source, the outcome is the same. So it was good to see someone like Matthew Perry put this out in the mainstream with his portrayal!
posted
Some people are listening Jocus, I've just been posting my experience, as have a few other people, and I also have been keeping up an informational thread - trying not to be pushy so people don't go on the defensive, and there has definitely been some interest. Hopefully once those of us who are posting see some improvement, other people will be willing to consider the possibility. =karen
Posts: 205 | From northern california | Registered: Apr 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
A couple years ago when I first got very ill, this was one of my constant symptoms. A very scary symptom for sure. I just felt out of it and like I was walking on a cloud or far away. I still have this symptom on and off but it is MUCH better thankfully.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
if toxins are a huge part of it, then why isnt lots of detoxing helping it?
i agree that it most likely is toxin related, but what if its something else?
inflamation maybe is a large player too.
who knows, either way, its very very annoying.
if it is in fact toxin related, lets have some suggestions on detoxing the brain. enough is enough.
hope you all are feeling well in dereal world.
Posts: 6 | From lyme killing land | Registered: Jun 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Infections (as well as allergies or liver overload) can cause toxic reactions, resulting in inflammation.
Lyme is one of the most toxic infections known to man.
This is not like taking your car in for an oil change and engine cleaning.
It's very complex and the spirochete has different forms and stages. It's an on-going process.
The liver is a huge part in a couple of ways. As lyme is toxic, the liver is asked to do more. And lyme can damage the liver (as can many infections) so the liver may not work as well.
Add to that the medicines that the liver must process and metabolize.
Detox is not an event. It is a life-style at this point.
I cannot possibly give this its proper due here. There are many articles that address this is an academic manner.
the ILADS web site and the LDA site offer DVDs about lyme. It's impossible to really understand what our bodies are going through until one really gets to know the bacteria involved. Even then, this is a surreal walk in uncharted land.
However, by understanding that toxins are a huge part as they create inflammation and many other reactions, it helps with that "reality check."
Yep, this is real. Yep, this is what can happen. And, yes, I'm working on it as best I can (or not, and then, well, what else will help that is within my reach?).
===
I hesitate to toss this one out, as I'm very tired and may just have to stop mid-sentence. I also don't have my home files to refer to . . . but here goes. and I know I'll use the word "stuff" a lot today.
Lots of stuff is processed through our liver. Some takes different channels. A certain classification of spent stuff (endotoxins) goes throught the Cytochrome P-450 detox pathway.
If that pathway is not good at detoxing - if it does not have the right amount of very specific enzymes (and these are not some you can take as a pill) . . .
well if the C P-450 pathway does not work to the fullest, excess porphyrins can result and that can cause all sorts of trouble from pain,inflammation to psychiatric symptoms, and even, in rare cases even death (with most genetic porphyria).
More information on the genetic porphyrias can be found by google "American Porphyria Foundation" - there is a list of drugs that push this system. For those who have a deficiency, these are to be avoided.
Also, there can be a secondary porphyria that may not be genetic but acquired and temporary.
the Cpn Help site has some articles on that as does Immune Support.com - I am concerned though, that one of the ways to lower porphryins - and even save a life - is with glucose.
So a chronic state of lower than fatal porphyrins can be damaging to cells, but we also can't be taking in lots of sugar. But it does not take a lot. Just a little will help. Beta Carotene is one of the best substances to help keep porphryins lower. Natural - not synthetic.
In emergency circstances, a glucose/dextrose IV drip can save a life.
So this is nothing to sneeze at.
I think (as do a few experts) that excess porphyrins can be part of what is happening with a herx.
So that is why patients are instructed to employ liver protection (milk thistle will help improve the function of the C P-450 pathway as will schizandra and glutathione. And protein helps us make glutathione.)
That is also why there is such a huge emphasis on "detox" - but again - remember - not as an event - it's an on-going process. Be sure the bowels are moving. Be sure not to add more toxins (such as with alchohol or aspartame), be sure good stuff goes in.
sorry for the long way around and I've not even come to the finish line. Again, away from my home Mac and having a hard time with a regular PC, you can find more by searching.
Patients with Cpn (Chlamydia pneumonia) are all instructed in keeping down porphyrins. See www.cpnhelp.org and search the term. (I just prefer not to do simple carbs so much as they might suggest. Beta Carotene and spirulina are my methods).
google for the sites of both the American and Canadian Porphyria groups (one is a foundation, the other an association, I think).
By adhereing to a diet and life-style that a patient with porphyria would, anyone's liver has a better chance.
(Uh, but here's a complication). Most porphryia patients have a hard time digesting meats. Lyme patients require good proteins. Fish (non-mercury fish, of course) and chicken seem to work for some. Grass-fed beef seem easier than conventional stockyard cattle.
Well, it is complex. So, now I'm sure anyone still reading this is whirling and I'm so ready to pull the plug on the computer.
I'll leave with something I read long ago that really helped be get part of my symptoms: seizures. "If anyone is given enough toxins, they will have a seizure." Now, my citation for that is buried deep in some book. Still, it points to the fact that toxins can create some very serious neurological "stuff" -
The better the health of our liver, the better our life. Daily care matters.
- -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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While this details Cpn, much of it referes to any toxic infection and offered repeated illustrations about porphyrins and potential damage.
Chlamydia Pneumoniae in Chronic Fatigue Syndrome and Fibromyalgia
- An Opinion, by Patient Advocate James Kepner
04-23-2007
The following article is reproduced with generous permission of the author, from the Chlamydia Pneumoniae (Cpn) Help website (http://www.cpnhelp.org).*
excerpts:
Porphyrins.
Porphyrin load increases after exercise or exertion because ATP stores, already in short supply because of Cpn parasitism, are used up at rapid rate by muscle activity.
This makes even less ATP available for heme production resulting in incomplete heme and its byproducts, porphyrins.
An inadequate supply of ATP means that only the amount of exercise up to the ATP limit at that particular moment can be tolerated.
The increased porphyrin byproducts result in post-exertional fatigue and long recovery time. This is the "over-exert one day, payback for three days" report common to many CFS patients.
--
Anxiety & Depression
- Porphyrins- noted previously for causing anxiety, depression, even psychosis.
[ 01. July 2008, 02:42 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
I haven't written in a long time, but after reading this, and living this so long, it's so
important to me to let someone else know how common this is. I lived this for years and it
used to scare me so much. I always had conviction, identified with myself until this
hit. This was the hardest for me to overcome. It was almost gone for a year until the day
before yesterday it came back. I'm on orals now, but was on iv rocephin for 10 mos. Looking
up depersonalization on line and knowing how many people have this made me more at ease. I
found a psych that I trust - having ocd convinced me that I lost it. now I recognize
that I have it, know it's only a physical condition that causes emotional/mental symptoms
and it doesn't scare me anymore. I hate it, and believe that I won't get back to me. I try to
focus other things and eventually I feel better. It took years. The worst for me was
having no feeling, happy, sad, I felt I was pretending and I'm an emotional person.
Obsessive compulsive disorder made me think of it 24/7. Anafranil is the tricyclic that helps
me deal with it, recognize it and bear with it until it passes. I'm on ceftin for lyme now. I
have lyme and bartonella. My son, who is now 13, occasionally says he feels like this, but it
passes on him, thank God. He has lyme since he's 7 but currently off treatment. This will
pass and its uncomfortable, but know that its common when you live it and it's hell. You will
have breakthroughs for a while and then go back if yours is like mine was. You'll be ok.
Feelings are there, just kind of under wraps with this stuff
hang in there. Keep on treatment and things will be back to where they were.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Sorry, I forgot, I do believe stress can bring down your immune system and it gets worse when stressed. Also during this time, I feel drained tired and my dreams are of people and places from my past are very vivid. When in this state, I feel time never passes. Not sure if yours are accompanied with sleep and dreams. Be well.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
thansk for clarifying keebler.
i already do daily detox rituals such as milk thistle, ala, IV glut, tons of water, vit c, NAC, and much more.
the derealization for me is getting better, worse when i herx, but overall it feels like its on the way out. i feel i six months ill be able to feel again.
something else to consider is that of course it is toxin related, but, i think it is also due to bartonella. now bart does produce toxins, but, it seems to be the biggest contributing co from what i can gather. treating bart appropiately is helping me immensely with this symptom.
thanks again for clarifying
good luck everyone
cheers
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
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 before and way WORSE when treating Bartonella. I definitely think it's a Bart symptom (at least what I described above).
It took about 2 1/2 mos on Bart meds (Rifampin and Zithro, along with Cholestyramine) for mine to finally ease up. My treatment lasted 5 mos.
The only thing that eased the hellish herxes was Xanax. I was up to 8 1mg xanax a day to get through these horrific Bart herxes and did not care about addiction.
As the herxes and depersonalization (sp?) eased, I had less need for xanax and naturally, without withdrawal symptoms, made my way down to 2 a day.
3 mos off abx and I have not experienced it to any great degree. PHEW! So scary!
Hang in there but you really need to target BART! I think Babesia is more the "braing FOG" and the Bart is the scary "floating above your body, I don't live on this planet" feeling.
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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SunRa
Frequent Contributor (1K+ posts)
Member # 3559
posted
yes, 24/7 for over 6 yrs years now. while it fluctuates in intensity, it's always present and is one of my most debilitating and stubborn symptoms. it can be downright terrifying at times. That along with severe headaches, sound/light sensitivity, seizures, etc, it often feels like pure torture in my head.
it gets worse when I'm having increased inflammation/swelling in my head, neck, and spine..which also makes my dizziness, balance problems, and cognitive issues worse. they all seem to hit me hard at the same time.
for me, I think it's a combo of neurotoxins, infections, and candida.
interesting about the bartonella. that's one infection I haven't really been treated for properly.
it's a horrible symptom that's impossible to really put into words and one that many doctors don't understand. And it's different than "brain fog" which to me is more like spacing out, forgetting things, etc. I have that as well and it's awful, but this is definitely different. I feel for everyone here who's dealing with it and hope we find some relief asap.
Jeanne
Posts: 345 | From East Coast | Registered: Apr 2008
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
up - just curious. started zithro for bart 2 weeks ago and upped ceftin to 1500 mg. day. Monthly cycle soon and full moon this Friday. Am I nuts for thinking that all this has to do with this that this makes depersonalization
worse? I'm not worried, it does pass,but identity seems to go - not a dreamlike state, but definately not as a routined state as you're usually like. It's hard to explain wondering if it's like this for others going throuh it?
Thanks SOOOOOO much. Be well
By the way, NUMB was great - it's autobiographical for me for 2004-2005 before I started getting this as often as I live it now. Now it's just a here it comes again and wish it would leave. thanks again
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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quote:Originally posted by jocus20: I know there have been other posts about this topic but i was wondering how many people here have the derealization or disconnected feeling all the time.
For me this was one of my first symptoms to appear and it never went away. There are moments or days where it isnt quite as bad but has been with me everyday for over 3 yrs.
It seems like most people will get this symptom intermittently and have constant pain. For me its the other way around. I have it all the time and the pain comes and goes.
Who else has the same type of thing? Anyone have any insight as to why this may be? Anything helped you with the derealization?
Thanks, Joe
Hey Joe. Signing in here man.
I'm on minocycline and cipro now which is making it worse. Only real change in the past two years.
-------------------- Lingering chronic symptoms: Fatigue, Derealization, Brain fog. Monthly fever with flu-like symptoms that last for weeks. Lyme WB Bands Positive: 31, 41, 58, 66 HHV6, EBV, CMV, & Mycoplasma IGG positive. Chronically Low CD4 count. Posts: 106 | From Texas | Registered: Apr 2008
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Bringing this up. Having a hard time with this one. Anyone chime in? What causes it?
Posts: 3528 | From US | Registered: Apr 2007
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I have this and it is rough. My psych doc says it can be a way the bosy tries to cope with pain and illness, almost to give yourself a break.
Also someone said that Dr. B says it is Bartonella at his last talk.
Derek maybe was told this?
Melissa
Posts: 3905 | From USA | Registered: May 2007
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posted
wow. I thought it was just me and its scarey. I feel like I 'almost but not quite' pass out for a second then 'come back in'. Sometimes I dont have it for weeks, sometimes several times a day. It makes me feel 'alien'. I dont know why I want to use that word but its the one that fits.
Posts: 234 | From BC Canada | Registered: Aug 2008
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
update.
my dp and most other symptoms are GONE
provigil keeps me sharp daily now but for those who need hope it will go away w/ proper treatment
ive seen world renowned drs, had incredible protocols put into place, and i am well.
as well as im gonna be at least
hang in there all u dp people. theres reality on the other side
d
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
Wow - i am glad i checked in to see this post. i don't know if what i am describing is the same thing. it comes and goes and there are 2 different physical symptoms. I'll be walking along and realize that I don't feel like my head is connected to the rest of my body. I have total control but I feel like I don't. The other thing is sometimes I'll realize I don't feel a part of my body. I could be laying down with my hands folded together for a while and realize I can't feel my right thumb even if I concentrate on it, but it doesn't feel numb just not there at all. Once I move it I can feel it - like my brain is reconnecting.
Posts: 43 | From md | Registered: Sep 2008
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posted
Glad this post is up. I think this is what I experienced yesterday. It came on suddenly I think brought on by lack of sleep. I looked down at my arms and they felt disconnected from my body. Then I could see people but they looked alittle distorted just slightly. Weird!
Scared the crap out of me...almost went to the ER. Thankfuly I had a lorezapam and fell asleep. I was actually extremely suicidal as it was happening, it was odd and frightening. I pray it never happens again.
Take Care, Ann
-------------------- If you keep doing nothing...nothing changes!
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