posted
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.
Posts: 111 | From Pa | Registered: Oct 2007
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-------------------- Energy flows where attention goes~ Posts: 302 | From Kauai | Registered: May 2007
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
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.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
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.
-------------------- May we all find peace one day and may peace prevail on earth ~ Traveler Posts: 66 | From traveling the U.S. | Registered: Aug 2007
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
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
Posts: 3905 | From USA | Registered: May 2007
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posted
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
Posts: 111 | From Pa | Registered: Oct 2007
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
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
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
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
Posts: 314 | From east coast | Registered: Oct 2007
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posted
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
Posts: 111 | From Pa | Registered: Oct 2007
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
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
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
Hang in there!! It will get better!! Posts: 1603 | From ny | Registered: Aug 2006
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posted
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!
-------------------- 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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posted
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
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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to catch up to me and what I need I may ahve to some things for myself.
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