I have been having trouble maintaining composure lately. I know there are psychological affects of lyme but some days they seem so severe. How do I cope with mood swings irritability and low make that no tolerance. I have always been a free-spirited easy-going person and lately I don't even like me . I can't imagine how anyone else can stand me. My husband tries but I think he wants his wife back. He's become my advocate because if I try to call a llmd and I can't get help I just cry and jump under the covers. I have always been fairly intelligent and I'm having trouble understanding some of the steps I need to take for testing and even understanding the info helpful folks here have provided. I just feel lost and desperate.
Posted by KauaiGoddess (Member # 11782) on :
Aloha blackpowder~
YOUR NOT ALONE!
Posted by Tracy9 (Member # 7521) on :
Have you considered an antidepressant, or at least ST John's Wort? Your symptoms are real and valid, and you deserve to get relief from them. Just as you might take Tylenol if you had a headache, these very real symptoms can be treated too. You might find you can get back to yourself again.
They can be an incredible help. You don't have to suffer like this.
Posted by KauaiGoddess (Member # 11782) on :
Aloha blackpowder~
I'm sorry to hear your feeling this way...
YOUR NOT ALONE! I completely understand as all
others on this board would agree...
It seems like you just discovered Lyme? Have you
been diagnosed? Do you have a Lyme Literate
Medical Doctor (LLMD)?What questions do you have
about testing...I'd be happy to help you try and
understand this stuff, as best I can...
Daily I'm learning more and more....there's a
lot to learn...and I was there, lost and
confused in the begining...the feeling of where
to start...it's hard with brain fog to try and
research... The info would be right infront of
my face and I miss it...so just post your
questions, even if they are redundant to many on
here... they'll understand...I understand...
If you would like, you can call me and I'll talk to you...
I found the most helpful thing is to know that I
WAS NOT alone...to talk to others who really
understood....it boosted my spirits, big time...
I too have always been easy-going and free
spirited and ever sense Lyme I've been an
irritated, angry, short tempered, agressive,
ultra-emotional and sentitive,stressed out,
depressed person...YUK!!!!!!!!!
I hated myself- ouch!I'd cry every
day .....I knew this wasn't me, I really knew it
was something in my body (before I got
diagnosed).... it is getting better with
treatment, I'm having breaks in-between feeling this way....
As hard as it is while feeling this way, self
love, compassion and understanding for yourself,
as much as you can..and realize that it's not
really you..your body is full of toxins and bugs
that are creating mayhem...I read in a yoga
magazine of this exercise and it has helped me a
lot.... sit in front of a mirror and just look
at yourself...don't judge...just sit...you may
begin to cry..so cry..but still sit...look at
your eyes, your nose, your cheeks, your
lips. ....etc.. with a beautiful eye....feel
that beauty that lies within you...SMILE at
yourself, smile and smile some more...it may
take time to feel the love , compassion and
understanding for yourself and what your going
through...it grows stronger the more you do
it...you may feel weird too sitting infront of a
mirror gazing at yourself...but that'll pass...
.....
Lyme has been very VERY hard on my family and
boyfriend...it also shows you who your true
friends are...other will agree
I'm sure your husband wants the old you back,
but he loves you no matter what and seems to be
there for you...your very lucky...smile..
For me it has pushed my relationships so hard...
making them grow stonger and closer- its truly
beautiful!! Try and feel how much stronger the
two of you are and will be having endured this together!
It is very upsetting to not be able to think
straight or understand things...BRAING FOG suck
big time!! But just try and know that thats what
your body is going threw and not beat yourself
up...it WILL clear!! I found it really helpful
once my boyfriend started to help me
research....it is very overwhelming and help is very nice...
Also, I just spoke with a lyme advocate in
wisconsin and she was wonderful...I can put you
in contact with her...she can mail you a nice
packet of info and answer many questions and
offer support as well...she's a sweetheart...
...I need to get ready for bed...good night... I hope this helped you...
I'm here, we are here...
Much love~
HUGS & SMILES!
Fawne
Posted by bettyg (Member # 6147) on :
bp, we all experience things o that nature! depends on time we've been sick.
i'm on zoloft which helps my mood swings/quick temper. i can tell if i forgot to take it.
b;ackpowder Posted by artraveler (Member # 12764) on :
Hi Black Powder, As you already know, you are far from being alone with those sx.
I have had the same kind of experience. It really s*cks!
I am now starting to get some semblance of myself back ~ little by little.
I feel like throwing myself a welcome home party, only I'm still not myself all of the time yet!
The good news is that there is plenty of evidence to believe, that with tx, you will better!
Your hubby can have 'his wife' return! I know that my spouse was really grateful when I was more like the old me!!
Hang in there, as my LLMD told me -- it's a rough and bumpy road, but one that's well worth traveling!!
IMHO, about the best thing you can do is find someone else who is/has gone through this kind of thing and depend on them
(& they can depend on you) to understand and be sympathetic, offer some suggestions on how to get through each situation, etc.
That has been the biggest help for me!! I had a lot of cognitive issues and the lyme rage and such, before I started treatment.
I still have to be really careful, but most of the time I feel like I have some control over myself now.
Just knowing that we are not alone in this has a certain amount of comfort also.
Good luck with your treatment & may you find peace as well as healing.
Posted by merrygirl (Member # 12041) on :
I understand how you feel! I remember clearly that I really completely lost it several times ater my diagnosis.
I think it was a herx then. I prayed for death, and I thought that this must be the worst form of torture around.
If you are in pain, you need to try to get that under control. I know even now if I am in pain I am a grumpy Bi@ch!
I also take Zoloft and it has helped tremendously.
I also sleep when I feel like that. No sense in torturing the whole house.
I also take epsom/peroxide baths several times a week. Add 1-2 cups of epsom salt and a big bottle of Hydrogen Peroxide and just soak as long as you can.
I have also tried Benadryl 25-50 mg and it helps me too.
I remember how alone and scared I felt in the beginning.
I found this site and it has been a blessing. If it were not for this site and the people here, I do not think I would be here now.
My family is very supportive but I wanted to be around people who knew how I felt.
There were no support groups around me so I started one! Maybe you can find one near you.
You have to promise if you feel like death is a better option that you will go to the ER! Please?
Just some thoughts. Take care- Melissa
Posted by blackpowder (Member # 13637) on :
Thank you to all you wonderful people. I am so grateful. I have pretty much alienated everyone out of my life except my husband and children because they tend to sweep this all under the rug or trivialize my illness so it is really nice to find support . Thank you all again
Posted by luvs2ride (Member # 8090) on :
Blackpowder,
So much can be affecting you mentally. Have you considered yeast?
Don't self diagnose or self-treat, but finding a good doctor who will test for many things is the best idea.
Most LLMDs I hear about and from my own experience are looking at multiple causes to your illness.
The ILADS LLMD I am working with said "by the time you get this sick, it is more than just one thing". In my case, she has bloodtest results to back her up. I have babesia, helicobactor pylori, ebstein barr virus, Qfever and flat adrenals.
1 yr ago, I had yeast but am happy to say that seems to have cleared up. 1 yr ago I also had very high lead levels (this can make you very mental). I have not retested that yet, but am no longer clinically symptomatic.
If you are having trouble pulling this all together, find the closest LLMD you can and let them help you figure out what is wrong and how to treat.
Good luck and keep us posted of your progress. The sharing of experience is what is so good about Lymenet.
Luvs
Posted by onthemend (Member # 13454) on :
I think I'm in the same place, BP. I have lost myself for the time being - although since I've been taking abx for 10 months, I definitely see glimmers of the old me peeking through.
I know exactly how you feel. Add to everything you said (irritability, anger, etc) a very negative frame of mind, and you have it! I was always very optimistic, outgoing, even-tempered and had a great sense of humor. Not so much right now. The worst is when I have such a short temper with my nine year old boy. Horrible. But, when I was the sickest, I couldn't even stand to hear his high voice. So, I'm much better than that now, thank God.
I recently went to a party (the first in many, many months!) and I had to leave after just 1/2 hour. I just couldn't take the stimulation, noise, confusion, etc - previously I would have been hosting that party! Monday night I have to do a tiny amount of public speaking. I can't even imagine what that is going to be like.
Most of my physical symptoms have improved so much with treatment that I HAVE to believe the mental ones will follow sooner or later. But it is difficult to have faith all day, every day - most especially because the instrument that would help you achieve a positive attitude (YOUR MIND!) is the thing that is damaged.
Try to be gentle and kind to yourself. It might not be what a doctor or shrink would recommend, but I actually have become more inward and solitary as a protective mechanism - I don't think it will be forever, and even though I don't love this kind of 'half-life' I'm living, I think it might be more healthful for my psyche right now. I'm kind of only out there on my 'good' days, so that I don't have to put on a show or go against my true feelings.
But I never stop challenging myself and trying - it's just not on a daily basis, and I NEVER feel guilty about laying low or backing out of something, or just telling someone it's a bad Lyme day. I do believe the bad days will diminish until at last they are mostly gone.
I'm sorry I don't have more medical or gung-ho advice at this moment, but just want to be another person saying I do understand, and I do believe we will get past this. And when we do, imagine how super-evolved we will be!!
Good Luck and Be Well
onthemend
Posted by meg (Member # 22) on :
Do you have an appointment yet with a good LLMD? That would be the best advice I could give! Posted by blackpowder (Member # 13637) on :
meg I am still trying to get in with one. I have been placed on a 6 month wait list. The other docs I've called are not taking new patients or have a longer wait list. I am broadening my search and hope I have better luck
Posted by lyme in Putnam (Member # 11561) on :
There were so many times I felt the way you are feeling. Thank God I found a good LLMD and
psychiatrist. I'm on anafranil for ocd and a low dose of xanax. For the times I feel like
I'm jumping out of my skin, I took xanax. I have not become dependent, but I'd rather sleep
than be awake for the living hell you are going through. I was monitored because you can become
dependent on it, but I just wanted to live my life normally, the way I used to feel. You are
not nuts - you have something physical that causes this. Depend on your family for support.
Be well
Posted by savebabe (Member # 9847) on :
Hang in there!! It will get better!! Posted by cjnelson (Member # 12928) on :
Man i know where you are. I have felt lost for so long. Not knowing where I went. And who this woman was! I also know the anxiety of not
being received, not being believed, and not getting the help you need when you need it can be unbearable!
The one thing I have learned through this so far is that I have to take the reins to a degree. My dr's can help me but I have to also help myself
that means sometimes, while waiting for the rest of my frickin circle to catch up to me and what I need I may ahve to some things for myself.
If you have to wait 6 months there are still things you can do...
DIVERSION!!!
Try to divert the energy soaring inside you as I know it is! Find SOMETHING to do with it. I know that sounds trite. i dont mean it to be at
all. I KNOW the agonizing tension that builds so quick you dont even know of what depths it came from. I just know that setting a path with
knowledge, or as a good frined of mine says, a path with HEART can make a real difference no matter where we are.
I kept that path with my full heart in it and by doing so I found out what was wrong with me. So this path will also take me to my next intersection
leading me down the path of HEALTH and finding myself again.
I know, in my heart, that you are on the right path too. Keep your focus on that and dont ever, ever, ever give up or give in, my friend...
and no matter what....
you are not alone.
We may just be words on a page
but
these words have been a foundation of hope,
progress,
support,
love,
understanding,
and eventually they will be
the YOU that you want to have back for yourself and your family!
Stay strong! Posted by HaplyCarlessdave (Member # 413) on :
I found gingko very helpful. For me it seems to have an effect similar to that of st John's, but is not known to cause any problems with sun sensitivity in high doses (as does St John's). At the time I was on doxy and ceftin, so already super-sun-sensitive. DaveS
Posted by princesslee (Member # 12141) on :
Hi, Don't think your alone, because you're not! I'm a very easy going person and hardly ever get angry.
When I first got Lyme I thought I was losing my mind. I would flip out suddenly, without warning, and usually for no real reason.
I broke quite a few chairs in our house throwing them and I would kick stuff and slam doors. I was a mess.
I think antibiotics helped a lot. I did go on zoloft for awhile as well and that helped a little.
Hang in there and know you're not alone. God bless.
![[group hug]](graemlins/grouphug.gif)
b;ackpowder ![[kiss]](graemlins/kissing.gif)
![[Smile]](smile.gif)
![[Big Grin]](biggrin.gif)
to catch up to me and what I need I may ahve to some things for myself.