posted
I just posted this on Medical Questions board, but wanted to post it here as well. I need some help and support please.
Sorry everyone but I need some support. I've found that the last couple days I've been VERY depressed. I've been sick for awhile now and only been treating for about 4 months. I really haven't been REALLY depressed like since it began.
I'm only 28 years old and I feel like my life is CRAP right now. We are living overseas due to my hubbys military orders, and have two young children. I have NO support or family nearby to help, and I'm afraid I may LOSE it emotionally.
I find myself thinking horrible thoughts and don't want to keep living like this at times. Looking back on the first few months on treatment I think I may have had small improvements. I didn't think so at the time, but now that I am worse I keep thinking back and realized I was better.
I was off abx for a couple weeks and recently just got back on. I started two weeks ago for a few days, but came down with the flu so stopped. I started back up this past Sunday so have been on for 5 days. I'm currently on Zithomax 500mg twice daily, amox 500 3x daily. I take these two for 4 days and then the follow with 3 days of Flagyl 500 2x daily. Today is the first day of Flagyl.
I am feeling horrible. The dizziness and brain fog is debilitating and I can't function normally. I'm still having joint and muscle pain, and my arms and legs feel weak and wobbly. Also my tongue is still burning and swollen.
I don't know if having the flu has made me worse or what, but this is ridiculous. I don't think it's a herx cause a lot of the symptoms started rearing up before I even started the abx. However this god awful depression/ mood swings is since starting the meds.
I'm so grouchy and VERY irritable. I've been screaming at everyone and prefer to be ALONE. Yesterday I just broke out in tears and cried in dispair...
The LLMD I'm seeing here honestly isn't that great, but it's my only option at the moment. I can't afford to fly back to the states to see one there. TO make matters worse, my husband just doesn't understand. He once told me, "It's ONLY lyme disease, and you are being treated for it!" In other words I needed to suck it up and that he didn't think it was a big deal. Really sucks.
I am just SOOOOO sick of everything, I could scream and give up. I don't want to be like this anymore. I used to be a fun, loving person that everyone liked to be around. Now I'm just grouchy and mean. I don't want my kids to see me like this. Breaks my heart that I'm taking my anger out on such innocent souls.
Please any advice is needed. I'm desperate here.
Also, how can I be sure it is even lyme disesase? IF the tests are so inaccurate, how do I know? I don't want to keep taking abx with horrible side effects if it's not lyme. Ya know?
Not to mention the expenses of the lyme dr and etc... I'm so hesitant to believe anything about this disease regarding testing.
I tested Pos through Igenex, but neg on all other lyme tests. My cd57 was 13, but now I'm learning that this test is pretty much crap. Ugh... I just don't know what to do!
blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
Hang in there. It is a tough road. This disease is not for the weak.
If I could give you one idea of support, it would be to pray. Do you have God in your heart? that might help you cope better.
Also, write down your symptoms in a list. When one gets cleared up, mark it off the list and write down what treatment cleared it up. This will help you SEE progress and also will help narrow down your biggest problem.
I found that by doing this, bartonella is my worst issue, now that I'm treating it alone, I'm making huge improvements!
BTW_I've been on abx for two straight years. I am nearly well. You will get there but it does take time. You are on a good treatment regimen, just hang in there! Don't give up! Your kids will learn how to fight back when life gets tough, that is a great lesson for them.
Start trying to write down one thing yo uare greatful for every day. Even jsut that you are being treated at all and that you know what you have wrong with you. Many people don't.
Go to read the success stories here. That often brought me out of depression in my early days of treatment too. Remember alot of this could be from the disease itself. Depression is common with this illness.
It sounds terrible but I also found strength in thinking of others that are worse off then I was. I used to watch Extreme Makeover Home Edition and some of those people are so strong and they were worse off than me. Espescially some of the sick children. Find strength in places like that too.
I also struggled a lot with getting my hubby to support me. It took a lot of time, many fights, and many tears but he finally GETS it! You kust have to educate him and talk it out...many times.
Find small joys each day. Hearing your kids laugh is a good one.
good luck and stay strong! You will get better.
Posts: 1104 | From N.California | Registered: Jan 2008
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
One more thing I wanted to say is that 2008 and 2009 have been great years for lyme. A lot has happened with research and the film Under Our Skin coming out. it will only get better from here.
I too have been angry and irritable. It will get better with treatment.
Also, you should consider erlichia. I did a run of doxy which cleared my brainfog in 3 weeks. It has neve come back more than just a little.
Also, bartonella is the cause of my anger and irritability. It got better treating bart.
Posts: 1104 | From N.California | Registered: Jan 2008
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posted
I am soooo sorry your feeling so bad and depressed.
Ya know im old at my age we dont do a lot anyway. This mess still gets to me to. For you to not have any support i cannot imagine how painfull emotionally and physically that is. To not be able to do the things you have done with your kids.
Maybe if you could get a book or print out some info for your hubby. Maybe have the doc talk to him.
The depression could be from a lot of things. For one thing being stressed makes you feel worse in its self. You dont have the strength because of treatment too to deal with anything hince you get angry. Plus sweetie this effects your emotions. Believe me do i know. I am so angry with my kids now i dont want to even talk to them. Because they dont even ask how i am yet i see them volunteer to help others clean house etc on facebook. I just got off period.
I am very sincetive right now. Things that most of the time would not bother me do now. Sometimes ya just need family to care. My hubby tho is fantastic. It breaks my heart for anyone who does not have that support.
One thing is keep taking meds and one day it will click. Until then there are great people on here who will support you.
What you are feeling is normal dont come down on your self. Its all part of lyme. I had it for 8 years then well for 6 now im back sick again. Like you i question is this lyme or something else. I think we all do that because 10 days abx and its over doesnt happen for us. If it gets to bad get meds for the depression if necesary.
HANG IN THERE SWEETIE.
Posts: 112 | From Ohio | Registered: Aug 2006
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posted
Oh and by the way thank you and your husband and your families for the sacrifice you make for our country. God Bless you and keep you.
Posts: 112 | From Ohio | Registered: Aug 2006
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posted
I am so sorry to read this! I remember days like that, where i felt so alone, and had very dark thoughts-very unlike me. But it was misery then.
During a month-long worsening of my neuro symptoms, I got to the place you are now. Then, when I thought I could not take any more, I began to feel better. Every little milestone, every better-than-yesterday day got me closer to where I am now-about 80-95% my old self.
Sending you good thoughts...be strong....turn to this site when you need us. Do NOT give up!
Posts: 283 | From where the ticks are! | Registered: Oct 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
kareamber,
I just wanted to say that I am praying for you.
Is there a counselor or clergy person you could talk to for free to help give you hope and strength?
There are better days ahead.
Please do not ever give up. Do not let this illness be stronger than your hope.
Have faith. Pray for strength daily. Pray for direction so you will know what to do.
You are not alone.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Hey Kareamber,
Going through treatment isn't easy, in fact, it's hell.
But remember you have a disease.
I had to constantly remind myself of that. In fact I still do.
There are so many things I've done and said while sick that I'm appalled at.
This disease is so insidious. It affects not only our bodies but our minds as well.
Hang on to the hope that you will get better and your emotions will stabilize too as you recover.
For myself, I know that normally I'm a pretty stable individual but since getting sick, it's like I've gone off the deep end.
Not anything like my real self.
It's the disease, not us, remember that Kareamber.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6147 | From Columbus, GA | Registered: Jul 2004
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posted
Hi - just curious whether you'd have any way of finding any others with Lyme where you are?
Also, what about anyone else to talk with there, just in general, for some support?
I think it would be a good idea to get the UOS DVD and watch it with your husband. He needs to come to understand what you are going through. Right now, it doesn't sound like he does.
If the IGeneX test was positive, plus you have that low a CD57 score, you are positive.
It's pretty tough going through treatment like this, also with small kids. I think you could use a break of some kind - wondering what and who could help make it easier for you - any ideas?
Posts: 13116 | From San Francisco | Registered: May 2006
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bettyg
Unregistered
posted
kare
remember there is SOMEONE on this board 23/7 hrs/day! so you are NEVER alone ... come here and post.
military is supposed to be dealnig with lyme disease now; can your husband talk to his superiors to get you help and SUPPORT?
how old are your kids? my prayers headed to you/your family.
flagyl is terribly hard; i herxed bad after 5 days and QUIT it. so listen to your body what it can take and NOT take. hugs
IP: Logged |
posted
Just wanted to say im a pastors wife anyway i can help i would be glad to. I have lyme so i fully understand the feelings you have. Bless Terry
Posts: 112 | From Ohio | Registered: Aug 2006
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posted
Thank you all for your kind words and encouragement. It TRULY means the world to me. This disease is HORRIBLE and I wish it on no one. I agree that this disease has a way of altering ones personality and actions. I've always been so patient and had a calm easygoing disposition, but since being sick I'm the opposite. Everything gets on my nerves, and I'm so irritable. I hate it, but I honestly can't help it.
My husband is killing me. He's not mean in anyway, but he just doesn't get it! Sometimes I wonder if I'd do better with treatment without him! Sounds horrible but it's true. I'm in a foreign country with no family except him, and have no support except from my family in the states.
I just don't know what to do. Today I feel a bit better emotionally not quite so depressed, but still very down. I just want to be ME again. Be YOUNG again. All my friends are having the time of their lives now, enjoying their youth, and I'm living like I'm 90 years old. I'm so weak, dizzy and tired it's ridiculous.
Anyways, thank again for listening to me. It's nice to know that others understand.
I appreciate everyone on this forum and praise you for going through this fight.
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