Mental/Emotional Issues (+Lyme it looks like you've had a lot of this)

I wasn't sure I wanted to post this. I've posted a lot recently, I know, and this stuff is definitely outside of my comfort zone. But it isn't going away, and I was looking through past posts to see if other people had similar things, and I found a million (ok, maybe 3) posts by +Lyme from a while back that seem to echo EXACTLY what I am feeling.

I'm having a lot of mental/anxiety-related issues recently. My anxiety has come back, and combined with decision-making problems that Lyme gives me, it often leaves me paralyzed with fear when I am trying to deal with issues in my life. Instead of problem solving, or even just making phone calls etc. I freeze up. And I get this weird mix of completely unable to focus on most things except for a few things that keep running through my head. For a while, I was sure all my co-workers hated me/were judging me for all my doctor's appointments. Luckily, after talking with my therapist and actually talking to my co-workers when I get back, I've realized that one isn't true. But I am still feeling very scattered and wired and foggy all at once...very weird, and not very "clear" as far as thinking goes.

With the decision making, I also have the issue that if I have to make a fast decision, I either do nothing or make what usually ends up being a terrible decision (this one has almost got me in accidents driving multiple times). Or I find myself thinking about things forever but not DOING anything...or just zoning out entirely

And, as you can tell from other posts, I get my fair share of depression along with the anxiety. And also stress- there are some days where for no apparent reason I just feel like a giant vibrating ball of stress, no matter what I try to do to calm myself.

But the biggest issue I have is I have been having weirdly obsessive thoughts about suicide lately. I am NOT SUICIDAL. AT ALL.

And the thoughts aren't about me hurting myself...There are never any specific thoughts/plans...just sort of trying to figure out when people get to that point and why. I've definitely been depressed lately, but the worse I've ever actually thought about DOING is just walking away from treatment- nothing more. I don't know if it is a reaction to a medication, or because I'm depressed.

When I first got sick, I know I would occasionally have thoughts like "If I'm not better by XXX date, I will jump of [name of tall bridge]". But those dates always came and went, and I realized that as much as I wanted an end to being sick, I was never going to act on those thoughts, because I was never quite hopeless enough to believe there would NEVER be an end.

Maybe this is part of a similar thing? a sort of coping mechanism? A way of telling myself that although I don't want to act on it now, the option is always there?

That's not exactly a happy thought...but as soon as I wrote it out it kind of feel true. But it kind of freaks me out.

I know from past experience that, as unhappy as I might sometimes get, I can take a heck of a beating and be pretty miserable and still come back fighting

I didn't even want to post this, because I don't know how I feel about it and I didn't want to freak people out (as I've repeated, I am not in any danger of hurting myself). But I don't think I should ignore it, even if I don't know what to do about it, how to talk about it.

If anyone has experienced similar things and wants to share their experiences or thoughts, that would be great. I'm just feeling muddled and maybe a little crazy right now, and I'm trying to clear my thoughts and be more focused on the now, and not obsessing, and doing things instead of freaking out, and maybe actually concentrating at work, but I'm having issues.

P.S. Not trying to call you out or make you uncomfortable +Lyme...just hoping you can help me

Zeusy said...
I didn't even want to post this, because I don't know how I feel about it and I didn't want to freak people out (as I've repeated, I am not in any danger of hurting myself). But I don't think I should ignore it, even if I don't know what to do about it, how to talk about it.

Didn't want to freak people out!!??!! You forget who you are talking to. Like I say to my friends, "You can't scare me with crazy anymore!"

You have described very well what a lot of us are or have gone through. It is so hard to function. And sometimes seems a bit dangerous -- you know, the driving thing

I remember my husband just glaring at me and saying, "It's a simple question!" when I had completely frozen up not able to make the decision he wanted -- or even get the words out to tell him I couldn't make a decision.

After my freeze up I took the time to explain to my husband what was happening and why I couldn't respond. He adjusted accordingly, bless him. From that I got the clue to tell people what was going on with me.

Instead of panicking about forgetting names, I simply tell people I am not able to remember names and they re-introduce themselves -- a lot! If I'm in a situation where I will have to explain things or make a decision, I announce that I have cognitive problems and might freeze up, and ask they bear with me.

All this really takes the pressure off and helps a lot. Another thing that can help is to enlist the help of others. My husband, sister, grown children and friends have helped me with everything from legal decisions to which tablecloth I should use. As for driving -- there have been several points where I grounded myself. It was just too frightening and I could tell I was a danger to others.

I assure you this situation is temporary as long as you stick to your treatment but you would do well to get creative and try to develop some coping mechanisms.

One of those would be to lower your expectations of yourself. If you broke your leg, you would not expect to operate normally. If you were undergoing chemo for cancer you would definitely cut yourself some slack and make adjustments in your life. For goodness sakes, you have holes in your brain and nerve dysfunction -- there are going to be some disabilities! The fact that no one else can see that you are ill does make it more difficult. That's why, without self-pitying or apology, you have to tell them.

Be cool!

Hi,

Reading your post just now and the others that had responded, I felt my input might help. I am the wife of someone who has mainly neuro Lyme and was diagnosed very very late. After 3 month on IV Rocephin, which is the strong antibiotic that breaks the brain barrier and is recommended to treat neurological symptoms, my husband is dramaticlly better in many respects-- he actually laughs now and can watch a movie--  but he still struggles with much of what you describe and his LLMD talks with him frequnetly about whether he's still havinmg suicidal thoughts-- his like yours, were non-specific-- he never had a plan, but his thoughts were often of suicide. So you are absolutely not alone in how you feel. My husband is not yet able to work and his decision making is better but still shaky.

I don't know if your insurance will cover Rocephin, but I think you should investigate because it may make you recover neurologically (is that a word?!) the fastest. Oral antibiotics take longer, as do some of the holistic treatments.

Hang in there-- you can get better.

x Otter

mental symptoms are the worst part of Lyme. you described what ive been through and still going through to some degree.
i would try getting into a green tea habit. and/or try taking L-Theanine supplements.

my decision making has also been affected... this symptom is tied in closely to your own confidence in yourself being destroyed.
Lyme makes you feel crazy so you dont even trust yourself anymore. one thing i have found very therapeutic for this believe it
or not is video games. playing video games gives you constant stimulus to the instant decision making parts of your brain... but
youre in a non pressure situation in the safety of your home. even some internet video games are decent if you dont have a
gaming system. action games work the best. try it out.

Yeah...I mentioned I was having problems with depression to my LLND at my second last appointment, but at that point we were waiting for the results of a thyroid test, and she thought it could be low thyroid causing it. I am definitely going to talk to her in two weeks when I see her. I don't know if she can prescribe anti-depressants, but if she could I would accept them, and if she can't she'll have an alternative (and if it doesn't work, I can always go to a regular doc). I just didn't really realize what was going on...I mean, when it is LITERALLY all in your head, it is sometimes hard to realize what is happening.

Unfortunately, IV is out of the question for me. The only LLMD or LLND in Canada is my ND, and while she has some prescribing ability, it is VERY limited. She can do oral antibiotics, but no IV. Unless she decides it really is necessary, I am not willing to go through the extreme expense and difficulties associated with trying to get IV from a doctor in the states. My LLND is also going to start me on some better blood-brain barrier stuff, but because of my efforts to try to work out a GP, it has been very slow- I don't know when I will get the new meds.

Since many of the memory/decision making problems happen at work (because it is higher stress), I'm not really comfortable announcing that I have cognitive issues...but I do tell everyone I meet that I am terrible with names!

It might come out though...I have this tednancy to feel like bursting into tears when I am having difficulty solving a problem or learning something...in my course today, NO ONE knew what was going on, and yet I nearly made a spectacle of myself by bursting into tears when I got confused!

And Traveler- could point about snapping at people! That is something else I have been struggling with.

At least now I've realized that a lot of this is outside of my control. I was spending a lot of time angry with myself for being so stressed and anxious.

And BustaLymes- I do know it can get better. I never quite got to 100%, but my initial treatment improved the anxiety I had when I first got sick a TON. I got to the point where working on positive thinking, calming techniques etc. actually DID something, instead of just feeling like hitting my head against a wall. I think that is why I had trouble noticing things had changed this time around- at first I thought I had just lapsed into a self-pity funk, and all I needed was more effort and positive energy.

Some things will take a while to recover- I know some of my anxiety (esp with doctors) is due to past experiences. So when I get better, I do have to do some work to become less anxious with specific things (mostly health related). I have learned behaviors about not believing any treatment will work, since that was my experience for years. That one will take a while to go away

Thanks for making me feel less crazy!

I don't have much to say that hasn't been said already - but wow, Zeusy your original post sounds exactly like something I would've written! This is such a difficult situation to deal with, and there are no rules for how to live with a chronic illness, and it's so hard to deal with knowing that no one (except for people going through the same thing) understands what we're going through. What helps me is to always remind myself that things pass - even though I always got annoyed when my mother used to tell me that! Emotions are uncomfortable, but eventually they do change - you sort of just have to ride the wave and find whatever relief you can in the meantime.

At one point I was so wound up over trying to figure out how to be "normal" and keep my symptoms hidden that I had the worst panic attack of my life at work - they had to call an ambulance because I thought I was having a heart attack (the left arm numbness and difficulty breathing are Lyme symptoms that started BEFORE the panic attack, but they made me think I was having a heart attack, which made me panic...) It was kind of funny to think about after the fact, as I was working at a psychologist's office and the EMTs thought I was a patient and not an employee! ...After that - which was pretty much my breaking point - it became a bit easier to be sick at work. Everything was out on the table, and I was able to just be proud of all the things I did right - despite my symptoms and limitations - and how I still managed to come through in the end, despite cognitive problems, despite sometimes having to get my patients covered because I couldn't stand up, etc. Granted I ended up having to leave that job - although on great terms - because I just got too sick and it was unfair to our patients, but I really think the worst part of dealing with my symptoms in work and in life has always been trying to avoid them. Once I could accept them, and just find ways to work with and around them, things did become easier.

BustaLymes - first of all I love your name! Second, I've definitely been there with the numbness. For me it just seemed like I was too tired to feel anything - I'd catch myself just staring off into space and people would tell me I looked sad all the time but I honestly felt nothing - nothing but exhaustion - there was no room for anything else!

I have noticed though that whenever I try to take antidepressants (I've tried at least 10 of them in my life), I get more of that "zombie" feeling. With Cymbalta I would disappear for hours, and my boyfriend would find me and I'd have no idea what I'd been doing, thinking, etc. Clearly antidepressants are not for me! Have you noticed if these feelings (or lack there of) have gotten better or worse with those kinds of medications? It might be a part of it.

Oh boy - that's a lot going on! I'm curious what kind of test that was? When I did a neurotrasmitter test it was done through saliva.

Just remember that these symptoms aren't permanent!

Zeuzy,

I apologize, I have not been on here for awhile and did not see your post that mentioned me. I am trying to get ready to move and between that and working have not had a lot of time.

I am very very sorry about the way you feel -- I feel it too, so I know how horrible you must feel. I don't know what else to say besides I am very sorry and I am sorry for everyone else here who feels this too.

And I'm sorry that I don't know what to tell you to help you. For a long while I have not been able to be much help. If identifying w/many of my symptoms helps, then I can do that.

I'm glad you've received a lot of responses here and tho I haven't had time to read thru all of them, I have skimmed them all. I think you've received some help, or hope that you have.

1. Depression/anxiety: unbearable. Tremendous difficulty getting out of bed to go to work. Call in sick way too often, sometimes only because I cannot make myself get out of bed. At work: Ok for parts of the day, but am working w/ extreme difficulty. The stress is unbearable. Tremendous difficulty working while every minute I am wishing I could check out, OR check into a hospital, which I can't.

2. Complete inability to make decisions -- they paralyze me. Even the simplest -- I can't even decide what to eat or to wear w/o horrible anxiety and it takes me way too long to make the decision.

3. Completely overwhelmed by all aspects of life. I have completely withdrawn socially, except for seeing my daughter and granddaughter (with whom I am moving in) If I know that there are 2 things to do over the weekend, the anxiety and overwhelmed feelings are physically painful. I have difficulty even making a Dr appt or making myself go to the Dr. In fact, I have trouble making any kind of appt. If I need a hair cut, I will call a place on the spot or walk in somewhere and that is difficult. I cannot even clean my home -- it's too overwhelming and I can't even summon up the motivation to start.

4. Feelings that everybody hates me and I believe there is some truth to this, some is delusional. Probably borne from the fact that I loathe myself, and that is the worst part of this disease for me -- and my fear that this has developed from my disease and will never improve. I don't believe this part will ever get better. I hate each and every single thing about myself: how I look, every single body part, my attitude, my personality, the way that I live, everything. I feel and am worthless and am hopeless. And I feel that no one can help me with this.

5. No motivation, no desire to DO anything. Very little pleasure derived from anything. Feel dead inside. No hope of getting better -- especially since my back is getting worse and I know it will only get worse, never better. The significant increase of pain is making everything worse. Every task, every situation feels like H-ll. I cannot force myself to exercise (I believe that is made worse by pain and stiffness caused by my collapsed spine, which hurts from my neck down to my feet)

Before Thanksgiving I went to the county walk in mental health clinic to get an evaluation. The therapist who evaluated me did not listen to everything, rushed thru this like the 'routine' that it was, and made me an appt to start seeing a therapist. I did not go. I was too busy and overwhelmed at work to take the time off.

The next time I called them to reschedule, the therapist on the phone was rather snotty because I did not make my fist appt. I asked if there was anyone familiar w/ Lyme disease. She said if I wanted a Lyme specialist, then I should seek a Lyme psychiatrist. I told her I had a Lyme Dr but needed help w/ my symptoms. When she told me I would have to start over and come again to the walk in clinic to be re-evaluated, I wrote them off.

Even tho I cry a lot -- mostly from the mental pain -- I'm most recently experiencing some withdrawal of emotions. There are very few people (family) that I even care about. I have been getting rid of a lot of my possessions -- I don't want anything, I don't care about much of anything. I'm moving out w/ only the necessities.

I have to pack the rest of today, so will not be back here for awhile, so there is no need for anyone to respond to what I've written -- it is posted mainly for those who might identify w/ any of it. BUT, I hope that no one identifies w/ the hopelessness that I feel about this disease! NONE of this makes sense to me -- this is a darn bacteria and looking over this whole forum I am dumbfounded about all the aspects of it and everything it has done to people. And the fact that a good, strong antibiotic will not get rid of it. All the brain stuff, detoxing, special diet, endless protocols, etc etc. I'm overwhelmed with ALL of it.

I do have one question, tho, and will check back later about it: I understand that some people have been misdiagnosed w/ schizophrenia, when they had Lyme. My question is: Can Lyme CAUSE schizophrenia? No, I do not hear voices, but I do identify w/ many of the other symptoms.

Lyme will not cause schizophrenia. It can cause psychotic episodes but these are rare in my understanding. Treatment resolves all of this. I understand the mental anguish too....I suffered on-and-off for years with folks telling me I had anxiety disorders, panic, depresssion but it was all Lyme all those years. The worst feelings were the depersonalization and derealization...you are convinced you are going nuts....not a pleasant feeling.

I'm sorry to hear you're doing so poorly +Lyme...I thought some things might be getting better!

Your list is almost exactly what I am feeling...not everything to quite the same extent, but a lot of it sounds like it is coming straight out of my head. I just find I am SO stressed and anxious at work that it makes other things worse- like the paranoid feelings that everyone hates me. Normally I would shake it off, but because I have so much stress with no real cause, I sort of latch on to whatever worries come into my head and obsess about them. I'm trying to stop now that I'm aware.

I really, realy hope things get better for you. I have trouble with feeling loss about the person I was too. It is perfectly understandable, but it is also important to accept the person you are now.

Thank you for your response. It helps to hear that what I am feeling doesn't just happen to me

Yes, +Lyme, my pattern since age 17 (I am 52 now) was roughly 5 years of feeling good/normal and a year of the funky, wackiness due to anxiety attacks, derealization and depersonalization. The episodes would occur after a major life stressor and would slowly reseolve after about a year - for me it was VERY IMPORTANT to try and stay active and get out-and-about no matter how BAD I felt. If you hole-up in your house, it just gets worse or at least, no better. I was agoraphobic at times and withdrew from people. All those years, I was told I had anxiety disorders and depression. Anti-depressants NEVER worked but anti-anxieties did to an extent.

I believe the anti-anxieties (Xanax) worked because they relieved the 'artificial' anxiety I was having due to not knowing what was going on and dealing with those strange out-of-planet feelings. I saw more psych docs over the years than you can imagine and talked through therapy and the like...I had a GREAT childhood and no abuse or none of the stuff one would think would cause such symptoms I was having. I am somewhat of a perfectionist but while that miight make me a little neurotic, I do not think it explained those wicked symptoms.

Well, it turns out that a finally get tested for Lyme this past June and was positive BIG TIME. So much so that my LLMD is convinced I have had this a LONG time - probably since at least age 17 (when I had my first major 'episode') and maybe before - I remember having similar transient stuff going on since age 8 or so. Either way, Lyme has been my "buddy" for 35+ years. No wonder the anti-depressants did not work - it waqs LYME and the anti-anxieties worked only to clear the superficial anxiety I had overlayed on to my condition.

I am a fighter, though, and most episodes would last between 9-15 months before I'd get better again. I instinctively reverted to very healthy living and exercise especially during those periods - and SLEEP was important...I could not sleep during these episodes but exercise and the like helped with that - plus meditation and yoga and the like.

Looking back, I HERXED badly during these times and did not even know what Lyme was and eswpecially what a herx was! But that is exactly what I was experiencing! Now, over the past 7 months since my diagnosis, I finally have an answer to my life-long issues! At first when I got diagnosed with Bb, I thought I had an acute case but, the SAME symptoms I had experienced in flares all my life occurred! 2 + 2 =4 and it didn't take me long to suspeect chronic Lyme - I have EASILY been bitten by 500 ticks in my life - it's a part of life growing up in eastern and rural Maryland. Why no one thought to check me before now is a mystery.

This time, I am treating the critters and am getting better. My symptoms are gradually resolving. I plan to get rid of as many as possible and hopefully never face another flare again. I had not nown of detoxing before but, like I stated earlier, I had been running and the like instinctively so that provided some level of detox in my past episodes.

+LYME and others - here is the most important part of this - YOU MUST CHANGE YOUR FRAME OF MIND. If you do not, you will NOT get better - PERIOD. I know this sounds harsh but it is entirely true and it comes from 35+ years of experience. Your emotional state, if bad, is an added TOXIC condition to your system and you have to detox the emotional aspects of your condition as well. Meditate, take up a hobby (mine are writing and painting watercolors, volunteering in soup kitchens, you name it). If your mindset is negative or toxic, it affects your personal physical state as well - it will keep you stuck. IMO, keeping that negative emotional state can become like an addiction - like smoking cigarettes, or drugs or eating or whatever - it somehow is needed by our minds to enable some aspect of our lives. I know this sounds funny in that, Why would someone want to maintain a negative mindset but many do - it's subconscious and the answers are not always apparent.

To get through this, therapy might help or maybe just self-therapy through meditation, yoga, mindful walking, whatever. But, as I have studied this menace of a disease by reading gobs and bgobs of data, reports and internet sites, it seems that the folks who do not ultimately get better are the ones who are emotionally stuck in some form or another (exercise being another equally important modality). In all my past episodes, I had noticed that I was somehow stuck in an emotional funk and, until I got out of it, I could not improve my physical state. The answer won't come right away but, make sure you get out-and-about and stay active among people - at some point, that sparkle will begin to return...

OH MY - look how much I have written!!!! Sorry for the seeming soap box here. But I truly believe that the better part of being able to get well is to heal the soul....I preach this to myself and I expound upon it to the world. I am getting better now...but I still have moments of "poor me" and "why me" - these moments are counterproductive and not conducive of getting better - it's okay if they don't last more than a day or two - in fact, I think they are necessary, even, as part of the healing process...but don't dwell - istead, adapt a general active and agressive mindset towards our illness and not one of passivity and defeat and you will see gradual and noticeable results - I guarantee it!

Be well, my friend, be well! "BE"

yazzer

Post Edited (yazzer) : 1/22/2012 8:16:13 AM (GMT-7)

Mine is/was Bb, EBV, chlamydia, adrenal fatigue, low testosterone and very high mercury. I was a mess but I am well on the way to getting better. Read up on CFS and methylation...esp. yaskos simplified protocol. Its specifically for CFS but I have used it successfully to recovemy HPA axis and immune system. Theres NEVER a point where its gone too far. I literally thought I was done. Told my wife and dad where all my papers were...insurance. and such. But I am truly getting better and better each day. Never give up and try and stay positive.

Post Edited (yazzer) : 1/22/2012 11:59:37 AM (GMT-7)

Oh, I agree Zeusy, it's tough maintaining that positive attitude - I've been to the pits of Hell with this Lyme. Just always keep that spark going - even if it's tiny - someday it'll begin to grow again....when it does, keep the momentum moving forward and higher....I had months where every single day was a struggle just to get up and live...life shouldn't be that way. After a while that struggle started to lessen and lessen and then I could see that my mind was changing...that gave my abx a better chance and the other stuff I was taking - it sorta builds on itself.