I'm dx w/Lyme/babs. The sx I've had the whole time, regardless of tx (it always gets worse with an effective tx), is psych stuff. 2 yrs.
The biggest problems are rage, irritability, mood swings, and a form of depression that is unlike anything else I ever had:
I just will feel totally hopeless - that everything is hopeless, nobody cares/understands/can help, suspicious/paranoid, and sometimes leads to suicidal feelings. Black/white negative thinking.
Other symptoms have been lack of impulse control, (desire to) self harm, irrationality, weepiness, and anxiety.
I've lost my best friend of 16 years - we were like family - and my therapist, who terminated w/me even tho I didn't want to.
It's been so humiliating to tell people these things. "Oh, she's not speaking to me anymore." "No, I don't have a therapist, she terminated with me."
Partly my therapist was freaked by how sick I was, partly she refused to provide communication access (because I lost my voice), and partly I think she was turned off by my personality change and crankiness.
I'm terrified all the time that I'm just going to keep losing everyone who used to love me.
One of my friends has told me that it has been very difficult to hold on, and that she just tries to remind herself it's the symptoms, and that when we have a conversation when I'm "me," it helps a lot.
The biggest problem has definitely been the rage, distrustfulness, and hopelessness.
I've tried making myself note cards, putting up signs, reminding myself of things. Sometimes it works, sometimes it doesn't.
I had just started working with a peer counselor, but I think I've alienated her, too.
For most of the time, I didn't realize how altered I was. I believed the things I felt and said (or yelled).
Then I recently had a week or two where I normalized, felt happy again. I'd forgotten how it felt to feel happy.
Then another herx started, and I got ragey again. At least now I have the perspective to know how altered I am. It's helping me hold onto reality more.
But even when I know I'm feeling irrationally enraged, I have so much trouble keeping it under control. Sometimes I'll control it for hours or a day, but it's still there, and then it comes out.
I already had a tendency toward anger, which I've worked so hard on. But this, along with the hopelessness/suspicion thing, has messed up all my coping, and it alienates everyone.
I've been crying through most of this post.
How do others cope with this?
How do you not take things out on people?
How do you find a LL psychotherapist?
Thank you.
-Sharon
Posts: 223 | From Western Mass. | Registered: Nov 2008
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posted
Hi Sharon, I'm so sorry that you are going through all of this. My 24 year old son is also dealing with a lot of these same symptoms. There is an excellent Lyme Literate Therapist, S B, who had Lyme herself and went through a lot of the same things. She was able to help my son a lot. She practices in NY and CT.
I hope that you will give her call. Take Care,
Karen
[ 03-08-2009, 09:28 PM: Message edited by: Lou B ]
Posts: 89 | From Long Island, New York | Registered: Mar 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Dan's mom...
Can you take off the name and personal contact information for that person?
You can PM or email it if you'd like.
Thanks!
Hey swashbuckler...
Have you been tested for or diagnosed/treated for Bartonella?
If not, it miht be an option to look into.
Not always, but many times that comes from Bart.
Without proper treatment it won't disappear... so please do check it out.
It's funny you ask that because I just posted to a thread asking how I can tell what's Lyme, what's babs, and how I can figure out if I have bart.
Can you tell me which parts sound like bartonella to you?
And are bart psych symptoms that written up somewhere I can take to my LLD?
Do you think the fact that my psych symptoms get worse when I herx on a babs or Lyme tx means it's probably not bart?
It's all so confusing.
When I first read about bart and babs sx, I thought I probly had bart, but all my tests for everything (including Lyme) were always negative, even though I *knew* I had Lyme.
Then, finally, I got poz Igenix for babs and Lyme, so that's what my LLD is tx me for.
I think for her to treat me for bart, I will need very convincing evidence.
-Sharon
Posts: 223 | From Western Mass. | Registered: Nov 2008
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bettyg
Unregistered
posted
sharon,
i'm sorry you're going thru all this and have lost valuable people in your life.
you mentioned about self-hurting and suicide, so am copying this from my links to CALL THEM!
8-7-06 NATIONWIDE SUICIDE HOTLINE 1.800.784.2433 now please! If you are feeling suicidal, please call the SUICIDE HOTLINE. We care about you.
posted
My head became very loose this fall. I dont know if it was lyme or bart or mycoplasma. My doctor put me on low dose minocin and then ramped me up. Minocin crosses the BBB and deals with lyme, mycoplasma and possibly bart, not sure.
As soon as I hit full dose, I had a herx that sounds similar to what you are feeling. She backed me down to half that dose and kept me there for a while. Then we went to other abx..
The low dose was great. Afterwards, much much improvement.
The improvement still remains. I still have weepy times and anxiety that comes and goes in intensity, but what a difference...
Please know you are not alone.
Robin
Posts: 861 | From USA | Registered: Dec 2008
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Anger was one of my first symptoms. AT the time I had just started teaching an anger management class.
So, I was able to use some of the stuff I taught others to help me.
I wish I could recall what it was.
I do recall stepping outside of a dentist office to try and figure out what was going on with me on the inside.
One of the things was that I could not read the form to fill out.
Another was the noise and movement in the dental office waiting room. (Sound and movement sensitivity)
And I had walked in the heat from the parking lot to the office and was so worn out i could not think straight.
I had called ahead of time to see if they took my insurance and was told yes.
Then learned they did not when I got there.
Dentist did eventually see me but said it was not wise to treat me until I learned what was causing my symptoms.
I had shortness of breath while trying to talk to him, he needed to fill in the form for me and I really struggleed through the appointment.
AT the time, I was thinking I would have a checkup while I was home from work sick.
So, I would not need to take off work another time.
Little did I know 8 years later I would still not be able to return to work.
I also had head stuff that put me on the path to no longer having what it takes to fight this and thinking I just needed to throw in the towel.
But, with time and treatment things have improved.
So hang in there.
I have a housekeeper that comes for an hour once a week.
When she came two weeks ago, I had the sensitivity to the skin and felt like a volcano getting ready to erupt.
I did not let her in the door and asked that she come another time.
I pretty much hibernate when I have the lyme rage issues.
The brain does not work right. Someone will just look at me wrong and I want to go for the throat.
Since I know it is the lyme, I turn around in my power chair and head home.
The brain is not functioning well enough at that point for me to be out.
I was angry last night. I got on the elevator and went up stairs.
The brain was not working well enough to figure out which buttons to push and I ended up pushing the help button on the elevator.
A recording came on saying person trapped in elevator along with a loud noise which made things worse.
I was able to stay there and let the operator know it was a false alarm.
but, my service dog was all ready off the elevator and the elvator had moved to another floor.
All worked out. I was able to get back to where my service dog had gotten off and she was standing there waiting for me.
I kept the rage under control. I knew it was the lyme and my brain not working right.
I basically handle things by staying away from people.
When Rosie is getting on my nerves, I know it is not her but the lyme.
It is rare that she gets on my nerves. Rosie is my service dog and a big comfort.
I talked to a guy who had Al's. he had anger issues.
he said he knew he was not dealing with things well when the dog cowarded and ran from him.
he said he knew he had to figure out a better way to deal with things when he was like that.
No one wanted to be around him. Here he was living his last days on earth and his wife and daughter and go were staying as far a way from him as they could.
A lot of words here. It may or may not relate to you.
If not, just scroll on by.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Boy, do I relate to your post. For one thing, I'm a powerchair user and service dog partner, too. Smile.
If you want to PM about SD stuff, that would be great. (I was already disabled, with SD, before Lyme. Is all your disability due to Lyme stuff?)
I know things are bad when I'm mad at Gadget. Fortunately, he pretty much just gives me a look that, if he were a person, would be rolling his eyes and going, "Oh, puh-leeze," and goes back to his nap.
I also try to isolate myself when I'm ragey. I feel like it's the only way I can make sure not to take stuff out on others.
But sometimes the rage will not go away, and I can't isolate from everyone continuously.
For example, I have personal care assistants (PCAs) who come every day, and I can't send them away because I need them for basic personal care needs.
I just try to keep myself in check, and I've written them letters explaining about the symptoms and telling them it's not personal. That seems to go OK.
It's much, much harder w/my partner (human, I mean, not canine, grin), because she's around a lot more, and it's a lot easier for emotions to get triggered.
Sometimes the isolating doesn't work bec then I just stew about whatever I'm angry about. Even if I distract myself, it seems to stay and smolder.
Also, it increases the lonely/depressed thing. ("Nobody likes me, everybody hates me, I'm gonna eat some worms.")
Yeah, and the friend w/Alzheimer's. I get that. One of my best friends died 2 months ago, and his widow is so angry at him because of all that happened in the years before he died.
My friends wanted to be supportive, but they're burned out now.
I really wanted to get a puppy last spring, because it was time to start raising and training a successor, but obviously I've been way too sick.
But I keep fantasizing and looking at petfinder (at adolescents, not puppies), because I feel like, if I had that happy, goofy, positive presence, it would help me focus constructively - outside myself.
But then I'm afraid I wouldn't be able to take care of the dog's physical and socialization needs, even with all my extra help, or worse - if I took my anger out on her/him.
It sounds like you deal with it a lot better than I do.
I wish you could remember your anger management training info!
Thanks for listening. It helps to know I'm not alone. -Sharon
Posts: 223 | From Western Mass. | Registered: Nov 2008
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