posted
hi everyone, i'm new here. this is a bit long, but please read on. i could really use some help.
i'm a 30-year-old male living in north carolina and i was diagnosed with lyme disease in late september of 2004. symptoms first appeared earlier that month. first was iritis (painful inflammation of the iris). then followed by severe arthritis in arms and hands, and dizzy spells a week or two later. then extreme fatigue, cognitive problems (trouble remembering anything, hard to have a conversation ... always trying to remember the right word for things, lost all math skills, became EXTREMELY irritable, moody, and easily frustrated). next symptoms were trouble walking, full body arthritis, lack of appetite, and the list goes on and on.
i found out about the symptoms of lyme disease, and was very relieved to find out i didn't have lupus, rheumatoid arthritis, fibromyalgia, or any of the other diseases doctors were trying to diagnose me with. luckily i refused to take prednizone.
i finally (after three doctors refused to consider lyme disease) took myself to urgent care, where a doctor there was familiar with lyme, and immediately put me on doxycycline for two or three weeks. within a few days, i felt markedly better, and within a month or two, maybe by thanksgiving, i was feeling like i was back to normal. or so i thought.
all my physical symptoms were gone (thank god), and i was functioning like normal at work. i should mention that during this whole time, i was engaged to the love of my life, but from a very long distance. she lives in oregon, i am in north carolina. in the following months, i had several big emotional blowups with her family members (who still live in NC), and caused irreparable damage to all of our relationships with each other. in the august of 2006, my now wife and i got married, with none of her family present for the wedding.
our marriage has been long distance to this point, but i am finally moving to oregon in two weeks. here's the real heartbreaker. my wife told me at christmas (last month) that she wanted to split up. she was tired of me constantly arguing with her over little things and blowing them way out of proportion. i had repeatedly said rude things to her over the past year, and really hurt her feelings on a regular basis. i had also been an emotional wreck when i would visit her. we would only get to see each other for four days at a time, and if some little thing went wrong while i was with her, i would become instantly mopey and pouty. (none of these things had ever been an issue with me before lyme disease, but i hadn't really considered that fact at this point). despite my pleadings and insistence that things would be fine once we were in the same town, without the stress of a long distance relationship to deal with, she was firm in her decision, and i came back to north carolina a week earlier than planned, and spent new year's alone.
the day before new year's, i took myself to a doctor and asked to be prescribed wellbutrin, for depression, and to help quit smoking. looking at my records, she asked me if i was needing help dealing with lingering lyme symptoms. i said "no." she siad "no mood swings, irritability, crying spells?" i replied that yes, i was indeed battling with those very things. she said it was common for these things to linger a while after treatment.
"Brain-inflamed, infected people may say impulsively destructive things, then wonder, "Did I say that?" Either they don't feel responsible for their words at all or they are mortified by them. But the damage to partners may already have been done. Perhaps they've been almost unaware of some small grievance for years - then that tiny hot spot suddenly takes inappropriate prominence as a life or death issue. Venom is spewed out...an unsuspecting spouse is left breathless. The mood "seizure" passes - but the accused mate feels like he/she is left bleeding on the floor. These verbal wounds may permanently change things in the relationship."
what i am wondering, is have any of you experienced a similar thing? if so, do these symptoms gradually disappear? i can tell that i have been doing markedly better in the past two months, since thanksgiving, despite what i am going through with my wife now.
or, do i need to look into another round of antibiotics?
aside from these mood swings as described above, my only other symptoms have been occasional mild anxiety panic attacks, causing serious shortness of breath, and a nervous stomach.
please, any advice would be greatly appreciated. my wife says she really wants a divorce, that she does not forsee me improving. i only recently emailed her some articles on the lyme symptoms i still am dealing with. i just didn't realize what i had been acting like, until she gave me a serious kick in the *** .
any ideas what i should do?
thanks for reading.
cgb
Posts: 2 | From Chapel Hill NC/Portland OR | Registered: Jan 2006
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi cbg
Being sick will make you depressed For Sure --some meds will too-- When you first get sick its hard to deal with --your confuzed and scaird---and sick--
For your own health you have to-- Get it Together-- If you allow the disease to take control of your mind -- It Will---
You have to be strong and take control of your self- no body else can do it for you--
I dont know how long you have been married or sick--if its been just a year or two and you have been sick only a short time--
Sounds like good ridence to me--
If you have been married for a more than a few years and you are having problems-- Maybe there was more wrong than what getting sick has brought on--
Eather way you have to take control of your self-- You know it takes 2 to fight--
Gitting devorced is hard on anyone --the trick is to Not make it any worse--
You cant make anyone Love you-- but you can make someone Love you More---
Its all up to you---
From what you have said it sounds like you have burned some bridges ---
Is it worth the time and effort to rebuild them?
Could be time to cut your losses and add some New Pluses --
Take some time and take control--
Once you make up you mind to do this a huge load will be lifted from your shoulders---
Having scenceless fights will wear you out-- I can think of Many Better and more Fun things to get worn out by----
The choice is up to you--
Let me tell you about myself-- Threw my life I have had tons of girl frinds--
When I was in high school-- I always had a car Full of girls--
A guy came up and asked me how I always had a car pack with girls---
I told him I treat them like I want to be treated-- with respect -- and I drive slow--
This works so well they made me the Bo of the girls club-- Over 50 nice and Very hot girls--
There was one other guy who was a Bo also--he was just like me---
Like I said threw my life Ive had bunches of girl friends--and you know what all of them still like me--- many of them still love me---
I have always been a perty chilled out person--Every fist fight I have been in I did not start-- but I finished most of them--
Let me tell you a story-- I grew up in El Paso-- Its a Very Ruff town--
It has Many large tuff gangs-- So many people got killed there half the time they did not even make the news---
One night I was at a party-- A gang showed up - The King Cobras--and they were Looking for trouble-- Well they surrounded me--
There was about 25 of them-- I could tell who the leader was--
So when I decided it was time to act- I punched the leader square in the mouth- I knocked out most of his teeth in one punch--he went down like a rag doll--the rest of the gang jumped on me then--
Luckily there was so many of them tring to hit me-- that it was hard for them to land a solid punch--
If there would have been just 6 of them I would be dead--
I raced motocross at the time so I was in super good shape--
Some how I beat a hole threw the gang and took off running--
They shot a gun at me and just missed my head by inches-- Let me tell you the sound a bullet makes as it zipps by your head you will remember for the rest of your life--
When the bullet went by I thought I was running fast-- Some how I kicked in second gear that I did not even Know I had--
I got away--
Nine people ended up going to the hospital--
The father where the party was-- was in a coma and lost one of his legs--
One of the people who went to the hosoital was the gang Leader--
I just had a few broken ribs no biggie--
The gang put out a hit on me-- Some how they did not find me--
Any ways about 3 years later the gang leader sent out a soilder to find me --- The soilder found me-- and told me--
Challo-(the gang leader) Was sorry that they tried to kill me-- that they respected me and they had ended the hit on me -- And I had no more to worry about from them---
Challo will never be my friend because I dont like people like him--
If I ever run into him-- I would talk to him-- maybe riminiss how from that night on-- he has to wear dentures--
What Im trying to tell you is hate is not written in stone--
People can work it out-- sometimes --
Just think hard about if its worth it-----------------Jay--
Ps- I did not include the Best part of the gang fight story-
Looking back I cant believe what else I did that night--
It was a real Stupid move- But I did it well----
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Opps-- dubble post
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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I have neuro lyme and prior to diagnosis had alot of what is called Lyme rage. Yes Lyme can cause mental instability. Research a bit on Dr. Brian Fallon at Columbia Medical in NYC.
When one is unwell it can be hard to get control of one's life. This disease can reek havoc on the central nervous system.
I too burned alot of bridges with my behavior. Be careful with the antidepressents as I and many here have not had alot of luck with them.
It may be a little late to make amends with your wife and I am truly sorry for that. Being sick and alone is not alot of fun.
Try to find a LLMD in your area to see if further antibiotic treatment is warranted.
Take care and peace.
Posts: 221 | From S. Florida/Massachusetts | Registered: Mar 2005
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posted
Hey CGB, parts of your life, sound so much like parts of mine. In fact, I just moved from Washington (state) to Southeastern Virginia.
Anyways, I am still trying to deal with Lyme Disease. I have some pretty severe mood swings, and I feel bad that I lash out at my live-in boyfriend throughout the day. He's a trooper, and has been trying to coach me through for awhile, but the one thing that had to happen was a sit down meeting together, where we tried to talk things through.
We talked about what has happened in the past with people with Lyme, and came up with a sort of "safe" word for him. When I start to get worked up, and he recognizes it he says his "safe" word, which lets me know that he's distancing himself from the situation, and won't judge me for what I say or do. (There's normally a lot of temper tantrums, with flying objects).
Knowing that he is able to withdraw from the moment, I don't have to worry as much about what he thinks of me for going off. That alleviated a lot of outbursts, because I'd constantly try to break up with him because I felt I didn't deserve him.
I thought I read that you aren't even sure if you have LD again (or still). Obviously, that's something to look in to. Have your wife read up on the complexities of Lyme, and if you feel comfortable with her sitting in on your doctor's appointments I'm sure she'd learn a lot (my boyfriend may know more about what's wrong with me than me. He's been to every appointment, and met with every one of my Drs independently when I was hospitalized. This has also helped hime cope with the changes I've gone through)
If there's one thing this nasty little disease has taught me, it's communication is key. Not sure what kind of person your wife is, but see if she'll open up and lay it all out on the line for you. Tell her not to hold anything back. You may hear some things that upset, or shock, or anger you, but at least you'll know what you're up against.
Sorry you're having a tough time.
-------------------- Sometimes when I say �Oh, I�m fine� I want someone to look me in the eyes & say �tell the truth�
trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
quote:Originally posted by cgb: i finally (after three doctors refused to consider lyme disease) took myself to urgent care, where a doctor there was familiar with lyme, and immediately put me on doxycycline for two or three weeks. within a few days, i felt markedly better, and within a month or two, maybe by thanksgiving, i was feeling like i was back to normal. or so i thought.
all my physical symptoms were gone (thank god), and i was functioning like normal at work.
or, do i need to look into another round of antibiotics?
cgb
I would suggest getting evaluated by a Lyme Literate MD to see if you need more treatment. (go to the "Seeking a Doctor" section of this site an ask for recommendations in your area)
To my mind, and I have no medical training whatsoever, 2-3 weeks of doxy is not a lot of treatment. There's a possibilty that it was just enough to resolve some symptoms and keep them at bay.
While others (eg. the emotional stuff) stayed on.
In the meantime, I hope you can talk to your wife and/or get her information so she can understand. Perhaps she'll be willing to wait and see if further treatment is warranted and or helps.
The emtional issues are way too familiar to me. I was chalking them up to being a 40 something female but they're way out of proportion with the situations. Ok, don't know if that last part made sense.
It's only recently that the rage aspect surfaced and scared me really badly. It's entirely out of character for me.
I'm also sorry you're going through a bad time.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
thank you all for your responses. today i made it to a doctor who had treated lyme, and he agreed with all of you that i only put the physical symptoms at bay the first time around. he prescribed 300 mg of doxycycline for 40 days. hopefully i can find a good doctor in portland in a few weeks, and be able to continue treatment if necessary, or at least monitor my progress. i have sent my wife copies of my posts on another board:
but i have yet to hear back from her. perhaps i have hurt her too deeply over the last year for her to ever trust me to behave again. then again, maybe she will understand that this is something i can knock out, hopefully never to return. i love her so much, and i hate that i caused her so much emotional pain without even knowing it, or meaning to.
Posts: 2 | From Chapel Hill NC/Portland OR | Registered: Jan 2006
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi CGB
See things are lookin Better Already--
Sometimes alittle space is a Good thing-- Take a brake for awhile-- Let things cool a bit -
Being reject herts anyone-- but its pain you bring on yourself--
Send your wife a copy of my previous post -- I wrote it for Both of you --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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posted
The key fearful syptom that thru me to fight for a good Dr. was realizing my personality was changing...my patience was missing, my cheerful, fun easy going attitude was missing, my creative self was missing, my fearlessness...change the world go for the gusto self was misssing..my sensitivity to others and keeping any unkind thoughtsto self slipped out once and that scared me enough!!!! Then along with that..came brain fog, confusion, eye problems, head pain and pressure,unable to drive at times, peripheral vision problems,,,ENOUGH!!!DEMANDED MRI of brain...came back with lesions and white matter! But Dr.has to write order r/o lyme lesions or strongest magnet won't be used, they won't slice thin enough and false mri will happen (2yrs. ago they looked at that one and damage was already there..they never wrote it up cause Dr. didn't mention he was looking for that and or tumor) go by your gut but Lymes DOES AFFECT PERSONALITY WHEN ADVANCED!much luck on meds..your sweet self will come back!! Believe it that's half battle! From my heart...kim
Posts: 21 | From Alexandria,Va | Registered: Jan 2006
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I had a lot of neuropsychiatric symptoms with Lyme Disease. And I lost a lot of relationships with family members who did not understand my behavior at the time.
I realize in hindsight that the burned bridges allowed me to focus energy on people who were more true blue.
A close friend of mine told me this quote that I like very much, " A friend is someone who runs towards you when everyone else is running away."
Those are the types of people I count as my true friends now.
My husband very loyally stuck by me through all of my mental and emotional episodes, and going through this disease deepened our relationship, even when I expected that it would tear it apart.
I used essential oils a lot to help my neuro Lyme symptoms. I also got this form of massage done, called Core Synchronism, that really helped the emotional/mood issues. It basically helps to relieve intercranial pressure.
A lot of our psychiatric symptoms can be because the pressure on our brain is too much, and the blood circulation and oxygenation of our brains are impaired. The bodywork I got helped to release the pressure and improve oxygenation and blood circulation to the brain. My mood would change almost immediately after these sessions.
Most people who have no experience with this disease or other conditions that affect the mind prefer to think that we are total masters of our own actions.
Well, often with this disease, sadly, we are not. But we can try to work to heal and regain control of our minds, our bodies and our true personalities even, through the healing process.
You need to have a partner who will understand that some of the things you do or say right now are because of a brain disease, because Lyme Disease can really do a number on a person's brain and central nervous system.
You really are not totally master of your actions as long as you have this disease affecting your brain. But you are master of whether you keep working to heal and get better or not.
Farah
Posts: 208 | From New Mexico | Registered: Dec 2005
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
to employ a politically incorrect expression, "it ain't over until the fat lady sings!" in other words, you get many opportunity to win her back!! Once you are in good treatment there will be improvements and you can always come to the board and vent about your frustrations with this disease.
there is always hope (hopeful123)
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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