posted
I wanted to start this topic for people to share the mental symptoms they've experienced resulting from tick borne disease. It's not easy to admit to or talk about these specific symptoms with your friends or family for fear of sounding like you're crazy. Feeling like the only one out there questioning your sanity is scary though. Just knowing someone else is experiencing (or has experienced) the same thing has really helped me to cope and find assurance & I'm hoping this post will continue that.
I think it would be relevant to list your gender, age & diagnosed infections that correspond with the symptoms. Please limit symptoms to those related to the topic & try to be specific.
I'm a 20 year old male. Positive bartonella exposure co-infection test which I think from reading info & other peoples experiences that a lot of this is caused from.
Symptoms: Sometimes I get paranoid about things...the thing is I know that the fears are crazy but still the thoughts come up. Especially at night if I have disrupted sleep/ nightmares/action packed dreams that wake me up. It's just like being extra tired and experiencing so much stress regularly makes you feel more on the edge/freaked out. Random anxiety for no reason. Sounds and certain images (like on tv) being very distressing and causing anxiety that before never would have bothered me. Feeling really disconnected or almost surreal / living in a dream. Anyone else every feel like they are drunk/ high absent of any substance abuse? I've also experienced this thing where I associate certain things with being sick and now they can cause an anxiety reaction...almost like PTSD. Like for example if I was listening to a certain song several months ago when I felt worse and was herxing bad and then I hear it again now it's like I connect it with how I felt and it bothers me. Same thing with smells. That's not exhaustive, might share more if discussions get going.
Posts: 15 | From Michigan | Registered: Jul 2009
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Fear, anxiety and panic that I have not known in this lifetime until this started. Up at 6 a.m. wondering if the apartment building is going to collapse on me. Sounds scaring me, visual distortions, outdoor plants and trees look like aliens at nighttime, etc. Street lights look like something out of a sci-fi movie. Mentally disconnected for over a year that only compares with a drug induced experience except it's 24/7.
Too many mental issues to list. Paranoia, dementia, fear, crying, rage out of NOWHERE and leaves just as quick. Thinking my family is plotting and wondering how I am going to retaliate. Then snapping out of it reeling in fear and how out of control I am and that something has invaded my brain so much and removed me from everything and everyone I love in this life.
There's more but thankfully the amnesia keeps most of it out of my memory.
Posts: 501 | From Cleveland Ohio | Registered: Apr 2009
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Journey, I see you just registered today.
Would you take the time to tell us about yourself, what treatments you've tried, and what you're presently taking?
Are you familiar with Dr. B's recommended supplements?
There are some things you may be able to do for yourself, but I'd like some history before I make recommendations.
Welcome to LymeNet!
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
Hey Journey, I've been going through this and more the past 3 years. It's scary and you can't do much. It's even hard to explain to other people. Anyways, I'm also in MI, and if you ever want to talk you can send me a PM.
Take Care, Karl A
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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posted
Hi Journey. I have and do expereince all of these things. I have been in treatment for 10 months. I think things are getting better, but it is very, very slow.
I keep faith (when I can handle it) but reading others who have made it through.
Read the success story of Wink9 under success stories or Amy Tan's story. I try to use them to keep me going when I think I have just lost my mind.
Kathy
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
What happened to Journey?
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Hmmm. I guess initial mental presentation might have been depression.
Female, 36. Sick for 20 years. Clinically diagnosed with Lyme, Babs, probably more. Just diagnosed in June. Treated 5 weeks now.
Depression then rage then anxiety. Depression was utter despair for no apparent reason. Lasted for years.
Rage is easily provoked. I keep it in check with cymbalta. I HATE the rage.
Anxiety strongly presented with birth of twins in 2000.
Diagnosed with OCD/anxiety in 2006. Was obsessing over cleaning pantry, closets, house, constantly.
The worst symptom of OCD was an overwhelming sense of doom that came on at sunset and stayed during the night. My husband and I referred to it as the MOTU (Mysteries of the Universe). I would be panicked about what happens when I die, would fear cataclysmic events, literally obsess on the mysteries of the universe. Meds took that away (cymbalta).
Next came forgetfulness and very bad word recall. Makes me feel stupid. I used to write poetry and stories. Received scholarships for my writing. Very disturbing to lose words.
Overwhelmed and unfocussed. Can't organize thoughts. Fatigued by planning.
That's just the mental. Neurological encompasses much more.
-------------------- Sofi Posts: 150 | From Northern California | Registered: Jun 2009
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
I'm a 40 year old female, dx'ed with Lyme, Ehrlichia, and possibly babesia.
Currently taking Doxy and Rifampin, as well as a Vitamin D supplement.
My mental issues aren't as pronounced as yours are, but I do have some.
I have rage issues--ask my kids about that. Typical 5 year old and 2 year old behavior (at least my husband says it's typical--don't get me started on THAT) sets me over the edge.
That leads into self-esteem issues--of course they don't listen to me, I'm worthless. All I was ever good for was popping them out, now I'm nothing but their slave.
Random anxiety issues. We went to Luray Caverns this weekend, and as we're going into the cave, I start thinking, "I hope there's not an earthquake." And I start thinking about being buried alive. Things like that.
Trouble focusing on tasks. I have probably 20 craft projects that I start and just don't get around to finishing.
I'm not taking anything specifically for these issues; they had me on antidepressants/anti-anxiety drugs before I was dx'ed, and I went totally off the wall on all of them--
Zoloft, Lexapro, Xanax.
I refused to try any more. I said I can handle headaches, nausea, etc. I cannot handle feeling like I want to go jump off the roof or wanting to run up and down the street screaming.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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posted
thanks for the feedback so far. did anyone have their symptoms (anxiety, panic attacks, stress, ect.) come on almost overnight after a traumatic event or stressor or doing something that lowered your immune system? stress lowers the immune system and I think this can cause a dormant lyme infection (or co-infection) to emerge.
anybody have a panic episode that lasted days instead of the typical 30+- minutes?
Posts: 15 | From Michigan | Registered: Jul 2009
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Ha! Sorry Journey, but almost everyone here with panic and anxiety has atypical forms. I have had panic/anxiety that was 24/7 for weeks on end. Couldn't function at all.
And yes, they came on over night and are horrific.
posted
I think my depression may have been situational--it is depressing to be really sick.
I am overall just more emotional than I used to be. Very little things can cause me to tear up, including TV commercials.
I have no history of anxiety/panic, but sometimes this is a serious symptom/Herx (not sure which?) for me.
I pulse my abx, and sometimes that makes me feel a bit bipolar.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i got bit in 2006, but probably have had it much longer...doing buhner and antibiotics.
the lyme rage is really bad. i get so angry at my husband i almost start shaking. i have to leave the room or i'll explode.
i worry alot, especially when i go to sleep that i won't wake up. worry about my health.....
the lyme rage has gotten much better but sometimes i still get really angry....i just have to work through it.
as far as mental problems, yeah, probably depression, crying in the shower type stuff. meds didn't work for me, only made it worse.
have night terrors, wake up with racing pulse and sky high bp. have to sit on the couch and calm down until it goes away.
this sucks....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Rage is a brand new symptom for me, with extreme irritability. I am treating babesia for the first time so I suspect a connection there.
I am a lot of fun to be around.
Posts: 3528 | From US | Registered: Apr 2007
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
Journey,
That's why I said from the get-go that I didn't have simply a panic/anxiety disorder like they told me--
My "panic attacks" could last for days or weeks at a time.
All my symptoms came on overnight, but not immediately after a stressor--
For me, 2007 was a BAD year.
I gave birth in December 2006, my mom died a month and a half later, I had gall bladder surgery, a colonoscopy and an endoscopy all within about a month.
Then the symptoms hit a year later.
But all the docs said it was a delayed reaction to stress.
Yeah, sure.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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posted
Starfall, same thing happened here with the panic attack lasting a week+. that is not at all normal. when it first happened I got this panic attack workbook trying to find answers and it had this section describing what a panic attack was. it said they reach their peak within 30-45 minutes I believe and then subside. knowing that I had been having an attack for days, this info did not help and made me worry even more because I didn't know what was going on.
Posts: 15 | From Michigan | Registered: Jul 2009
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posted
Posting this again for the 100th time. Be sure to get checked for Pyrroluria,KPU. Do a search here.Also http://drrandy.org/article.html I have not had the rage but very irritable,depression at times,and horrible anxiety,unable to handle any stress among many other things. I am positive for Pyrroluria,KPU with urine test as are many others. Not an easy treatment and need to be followed by a Dr. This is pretty new with dealing with chronic illness but has been around a long time for mental.Joyce
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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posted
Hi Brook, I think the test is around 45-55 unable to remember exactly now. My Medicare pd for it. My Md uses a different test than Dr K. Not many Dr are into this yet,so your Md may not know about it.Were u able to read my Md article. drrandy.org ? A new breakthrough in helping chronically ill patients. I would print off all info here and my Dr article.
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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posted
Clinical diagnosis: Neuro-Lyme in April 09. Don't know for sure, but may have been sick for a decade. Crashed hard in Autumn of 08 for 2 months, then again this spring in April. Sx: mostly neuro, some neck/shoulder pain, IBS, fatigue, vertigo, weakness, fainting, numbness, etc.
Here are some of the worst 'mental' type things I've experienced: anxiety, paranoia, R A G E, excessive crying (especially at night, just before sleep), feeling of unreality/being in a dream (if there were a soundtrack to it it would be something out of Twilight Zone or some horror flick), constant sense of impending doom, short-term memory FAILURE, inability to focus/concentrate/problem-solve/multitask/figure things out, can't handle any stress without melting into a pathetic puddle.
After two months of oral doxy, most of these have receded, thank goodness. I've been really irritable lately, and still having some memory problems, but the doom is starting to recede and I think I was even a little 'chipper' this afternoon! What a relief. Those mental symptoms were really friggin scary, like losing my mind and KNOWING it.
HUGS to anyone out there going through this. Hang on & don't give up hope!!!!!
Posts: 57 | From western Virginia | Registered: Apr 2009
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
I've had the depression, extreme anxiety and rage too.
I also had panic attacks for weeks. It was exhausting and horrifying. I thought for awhile that I just had anxiety/panic attacks. My mother had panic attacks for 10 years and hers lasted for days too, so she kept telling me that that is what I had.
She also had terrible dizzy spells, rage attacks, siren like sounds in her ears, ect...she chaulked everything up to hormones. She is now post menopause and is starting to listen to me when I tell her that she probably has Lyme, but isn't as bad now because her immune system is better.
One other thing about panic attacks. If it's just a panic attack, the second you get into the ER, you are supposed to start calming down because you 'know' you are in a safe place. Last fall I went to the ER. I was there for 4 hours. When I left, I didn't feel better in the least, that night I still couldn't sleep, the next day I felt the same. That is when I started realizing that my 'panic attacks' are not typical and mine started just a few months after getting sick after a family vacation to South Carolina.
My husband told me recently that he beleives his mom sees me differently now, that she thinks Lyme does do a lot of stuff. Said she just thought I was kind of crazy before.
Thanks A LOT!
My brother just got sick last Nov. He told me that for a week he was depressed for no reason, bawled like a baby on the way to work, ect. That was replaced the next week by anxiety. He is 32 years old, never had a panic attack in his life before Lyme.
Lyme screws up the CNS and the neurotransmitters badly. We cannot help the way we feel any more than someone can help throwing up when they are sick.
I'm so sorry that everyone goes through this, for me the mental stuff is definitely the most difficult.
posted
I think that the rages and ocd might be related to untreated or undertreated babesia perhaps duncani strain. I have this diagnosed by igenex and also fry bug positive but only since treating babsesia have rages gotten worse...neck pain unbearable increases with cold stiff feeling and rage comes on...energy is much better and sweats have stopped since increasing to 6 drops twice a day but headaches and rages worse.
Posts: 67 | From cape cod | Registered: Aug 2006
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posted
Can someone please explain to me what their week long panic attacks feel like?
Exposure to chemicals and mold cause this for me....I think. I'm really not sure if anxiety is what I'm experiencing. I don't have mental anxiety...I feel like I have physical anxiety. Does that make sense? I don't feel emotions or anxiousness associated with particular thoughts...so it's not like I can just tell myself that it's going to be okay. What happens to me isn't rooted in emotion.
When exposed to any chemicals or mold (so EVERY SINGLE time I leave the house), I feel like I'm going to die. My breathing gets really irregular, then I start to feel like I'm being smothered with a pillow. I get lightheaded, and I have weird sensations in my heart and chest. I feel like I'm going to pass out and die. I've taken my blood pressure while this happens, and the numbers lower and squish together. The whole room spins and I can't focus or think.
It doesn't matter what I'm thinking in my head. I could be completely happy or relaxed, but if someone walks in with fabric softeners on their clothes, my BODY panics.
Anyone try anti-anxiety meds for this? Sad when you have anxiety about taking anxiety meds. lol. I just react to EVERYTHING..
Posts: 710 | From West Coast | Registered: May 2008
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Lamictal is what has helped me through all of this. As I moved through treatment things kept getting worse. My LLMD (new) finally explained that a lot of the psych stuff are actually limbic system seizures in the brain, which totally makes sense. So he puts all his patients on antiseizure meds.
Things got a LOT better for me after that, although I am still struggline with the depersonalization/surrealism (IMO the WORST) also depression/hopeless. What has gone away is the terible anxiety. That was unbearable.
Posts: 3528 | From US | Registered: Apr 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Lamictal is what has helped me through all of this. As I moved through treatment things kept getting worse. My LLMD (new) finally explained that a lot of the psych stuff are actually limbic system seizures in the brain, which totally makes sense. So he puts all his patients on antiseizure meds.
Things got a LOT better for me after that, although I am still struggline with the depersonalization/surrealism (IMO the WORST) also depression/hopeless. What has gone away is the terible anxiety. That was unbearable.
Posts: 3528 | From US | Registered: Apr 2007
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posted
I could have written this post. I was bit in 2003 ..no real symptoms I can remember up until last year.. Im just starting my Lyme Dr. Journey with trying to find someone who will help me. I would say neuro/psychiatric symptoms are my main problem thus far.
My anxiety/panic came on out of nowhere! It was a few weeks after I fell really ill. I remember the date exactly. The attack lasted all weekend. I felt sooo out of it. Nervous, fear of going crazy, OCD like thoughts I obsess over certain thoughts/words, intrusive thoughts, depression, crying, not eating, tune into every sound.
Tried the natural route for almost a year (5htp, b vitamins, etc etc). Was working ok until this Summer had another attack that lasted a week. Went to the Doc and have been on Lexapro which was recently increased last week.. so far its keeping things at bay.
I am trying to get in with this DR who treats but it has been a battle. The stories on here keep pushing me to keep going and get the answers I deserve.
gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
quote:Originally posted by journey: thanks for the feedback so far. did anyone have their symptoms (anxiety, panic attacks, stress, ect.) come on almost overnight after a traumatic event or stressor or doing something that lowered your immune system? stress lowers the immune system and I think this can cause a dormant lyme infection (or co-infection) to emerge.
anybody have a panic episode that lasted days instead of the typical 30+- minutes?
I've never had anxiety problems in my life until three of four months ago. It was so bad I tracked down my LLMD home phone number and called him and told him of my terrible anxiety attack.
He wasn't happy that I found his number and called him at home. He told me if I felt so crazy to go check into a mental clinic somewhere. He was not very understanding at all but did prescribe me some Xanax,
That definitely helps me during the attacks which are two or three times a day now. Anyway, to answer your question, my anxiety came out of no where all of the sudden. It was quite scary and still is at times.
I have horribly loud noises in my head, so loud at times that I look up to see if there's an airplane ready to come down and crash on top of me. It sounds so real as if it's right there or maybe like a train coming after me.
When my wife or anyone walks up to tap me on the shoulder or just come up in front of me when Im not expecting them it rattles me something awful. It's not that I'm scared or anything, it's just that I overreact to things and everything seems so much more profound than it really is.
Xanax definitely has helped to keep me sane but the head noises and anxiety attacks have not gotten any better, and in fact, they've gotten worse over the past few weeks. I also wake up crying, mostly because I'm in so much pain every morning and feel so hopeless.
I feel like I'm fighting a losing battle everyday and it hurts me to think that this disease is going to take me from my family. I worry about them and am doing everything I can to try to beat this disease but I do feel hopeless so much of the time. Sometime I just start crying for no reason.
My emotions are shot. I'm sick and tired of this disease. It's wearing me out...
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I was first bitten by the tick when I was 12 years old. I am now 26.
I have had anxiety for a really long time. As long as I can remember I've been paranoid about everything and been a huge worry wart and of course, everyone told me I was a hypochondriac when I had symptoms back then.
It didn't get really bad though until the disease really came out which was around three years ago. Since then I've had panic attacks, high anxiety (higher than it used to be), I can't stop worrying constantly, etc. I've always been a worry wart, but it's gotten to the point where it encompasses my entire life - I can't get things out of my head to stop worrying about them for a minute. Things play over and over in my head, etc.
I have heart symptoms which really give me bad anxiety and depression. When I get the heart symptoms, I am thrown into a very deep depression that is hard to get out of for a few weeks. A depression where I can't stop thinking I am going to die and I can't stop crying because I don't want to die and leave my husband alone. It's one of those depressions where I can't eat anything or don't want to even do anything because I think 'what's the difference if I eat or not, or what's the difference if I do this or that, I'm going to die anyway'. It's a really scary place to be.
I also have what gwb said about being so frightened just by someone coming up to you. I am startled very easily. It used to be worse in the beginning of my treatment/illness. If someone walked into the room and sneezed I would jump a mile in my chair even if I knew they were in the room with me beforehand. Any little noise has me standing on edge. But I think part of this has to do with my extreme hearing sensitivity in which everything sounds 100% louder than it actually is.
At night when laying in bed, any little noise sounds so loud, like a bomb going off, that it goes through my entire body and rattles me really badly. Something as simple and quiet (for most other people) as the clock ticking will do this to me or just the house settling. It got so bad I had my husband take down the wall clock and turn it off because its ticking was just too much for me). These things are things that do NOT wake normal people up because to them they are very quiet noises that become background noise and nothing out of the ordinary. But I guess my system is so on edge and so on guard that even those tiny little noises, my body makes sure I am aware of.
-------------------- 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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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I swing like a pendulum back and forth between depression and anger. Once in a while it really goes into the black. I consider hysterical outbursts of crying to be a good sign, that my ability to feel and interpret is coming back. But what I cry about is absurd. I feel out of it all of the time, just not here, not connected to anything or anyone. When I try to express this it comes out as crazy rantings. There are times when I get a very strange feeling as though i am going to have a seizure, like my nerves were all just jolted by a lightening bolt. Most of the time I am numb. If anything stressful happens I cannot cope, just lose myself in anxiety and feel I have no conception of reality. It is the not knowing what is what that makes me so anxious. I have had some feelings of doom, even a few incidences when noises or objects just became so exagerated it was alarming. I have not been able to ride a particular horse since I was bitten because he is a handful and he makes me so anxious I just break down crying and shaking. I rode him for years and years before that and he is even old now but there is no way to rationalize with me. I could go on and on. It is isolating and lonely. I cannot remember anything. My thumb nail is coming off and i know I hit it but cannot remember how or when. I can see a movie and go out and rent it again the next week, start watching it before I realize I have seen it - still not remember what it is about. I have seen people I know but did not recognize and thought that they looked familiar like the person I used to know that they actually were. It is so crazy, so demented, so alarming.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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IckyTicky
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Member # 21466
posted
rage. It was one of my first symptoms. I even went to a Dr and asked for Effexor because I was afraid of my sudden rage issues. Turned out the Effexor was worse than the rage.. but anyways.. my father has this same issue. I hate it.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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