I was just wondering if there was anyone on this forum where both the wife and husband have Lyme, and live in the same house?
Is your marriage okay?
Or do you find it very difficult?
Are you trying to hold down jobs so that you don't end up on the street?
Do you both have severe nueorological symptoms? in severe pain?
I would love to hear your stories.
If anyone can relate, I would love a PM about how you cope,
I need encouragement.
Posted by Remember to Smile (Member # 25481) on :
There must be hundreds, but still few recognize it.
My successful LLMD has been treating LD for years. This practice has NEVER seen a "significant other" who is negative for LD if their partner was already in treatment for chronic LD.
Just so disturbing! Scary to even kiss!
missing, I pray you may have a local support group so you & your hubby can find encouragement with friends face-to-face.
Overall, winter is a dark time, so have faith that we will bloom again like trees in the spring time.
Admire each other's buds! Smile
Posted by missing (Member # 22437) on :
Well, it's not just the kissing part.
I just feel so sad for him. He is in torturous pain like I am in, but at least I can work at home at my 2 jobs,
He is working outside in the bitter cold, doing very heavy lifting.
He looks crippled with pain when he comes home.
He used to look like a giant football player.
For all the excercise he gets, he has no muscle tone, and doesn't lose any weight.
He eats like a bird, but still weighs 250 pounds.
What a wierd disease!
so he is so tortured with pain, that every reply from him is so curt, and angry, or nothing,
It has improved,
but I have really no one to talk to , except him, and all the wonderful people here,
If he quits work, we lose benefits which are helping to cover costs, and his money is paying medical bills, for which we have no coverage.
Posted by sixgoofykids (Member # 11141) on :
I'm sorry you both have it. That would be really tough.
My husband doesn't have it. Remember to Smile, your LLMD's comment seems strange to me since my husband doesn't have it. I guess we don't know if he has been exposed, but he certainly does not have Lyme Disease. Exposure + symptoms = Lyme Disease. Your LLMD must have meant that every significant other tests positive for exposure because certainly not every significant other is sick.
Posted by lpkayak (Member # 5230) on :
both husbands were in denyal.
i was in a 3 yr relationship with another lymie and i would say it was really supportive both ways. sometimes one or the other would be stronger. sometimes we were both down. but the understanding...the "getting it" -was huge for me. i miss that.
oftern we did't agree on tx or something---you know how so much isn't proven---but we had a mutual respect.
conversations or interactions might have been really funny for a fly on the wall...i'm remembering a conversation we were having when in the middle of it i fell down and he just kept on talking like nothing had happened.
we are still good friends and the support is still there. just the validation that you are not crazy is so important to me when 99% of my family just thinks i'm crazy and trusts regular docs.
missing...what are you guys using for pain control? some things work better than others. pm me if you want to talk specifics.
Posted by METALLlC BLUE (Member # 6628) on :
It's very hard. I'm not married but my relationship is no cake-walk. I won't get into specifics since she might not want her situation discussed, but for me, I'm very irritable, easily frustrated, and I isolate like crazy. All that distance must take a large toll. I'm not there for her a lot when she's really in need and very sick.
I can't do anything about it though, so I just hang on and hope we can weather it over the long haul.
Posted by missing (Member # 22437) on :
Thanks,
We seemed to have so many more arguments, since both of us got sick.
But, we are also closer than we have ever been in our lives.
I can tell when his Lyme brain is affecting him,
His eyes look different, very distant, he gets so irritated, and angry,
I knew, right when he woke up the other day, that he was having a bad "Lyme brain" day,
but at the end of the day, he collapsed onto the bed, and sobbed for 30 minutes,
I Think it is the saddest thing when man cries,
He cries when he emerges from the "lyme brain" episodes,
It is such a wierd thing,
Thanks for the support!
xoxo
Posted by Remember to Smile (Member # 25481) on :
quote:Originally posted by sixgoofykids: Remember to Smile, your LLMD's comment seems strange to me since my husband doesn't have it. I guess we don't know if he has been exposed, but he certainly does not have Lyme Disease.
Exposure + symptoms = Lyme Disease. Your LLMD must have meant that every significant other tests positive for exposure because certainly not every significant other is sick.
My LLMD's practice has (unfortunately!) found all partners to be infected if one was already in treatment first, then the other came in for LD evaluation & testing. That's 100% of couples both infected.
Maybe one could only be certain to rule out a Borellia infection upon thorough autopsy by a qualified pathologist. Not an option!
I understand your husband lives with you & your children (some of whom had LD ), so "he has been exposed" to the LD complex. Borelliosis and bartonellosis run in families for several reasons. It's a blessing he shows no symptoms of LD. May that continue indefinitely!
I disagree with your definition of LD. Infection causes a disease state. Exposure is just an opportunity to be infected (living outside the plastic bubble).
Exposure + symptoms without any infection may just be fear (Fictional Events Appearing Real) or theatrics.
In the case of LD, infectious agents (pathogens) are difficult to detect in vivo. Many are exposed to pathogens without becoming infected. Others are infected, yet remain largely asymptomatic if their environment & immune status are good.
Organisms can be infected with a pathogen without exhibiting outward signs of dis-ease. Those organisms may be termed "asymptomatic carriers" or "vectors."
Thousands of Americans carry pathogens in the LD complex. This morning, Bea posted an abstract that found up to 4% of people in the US may have Babesia duncani!
There are many connotations of "sick," and that brings us back to the topic of the thread: talking with other couples about Lyme.
I'm blessed my partner is usually sympathetic when I'm symptomatic. A challenge for us is that he doesn't want to get tested & endure treatment yet, despite showing numerous symptoms.
It's sad when I'm WAY too ill to be the shoulder for his dis-ease. Fortunately, he can still work and engage in all ADLs.
He's more generous in applying "tired" to me, but happily, he's becoming gentler & kinder to himself. Great to see him rest with a smile more often than he used to, rather than working until he drags.
As some of my symptoms ameliorate, it's been Interesting to see which of my supplements he decides to start taking also... Smile
[ 12-23-2010, 04:13 PM: Message edited by: Lymetoo ]
Posted by sixgoofykids (Member # 11141) on :
Smile, my LLMD doesn't think everyone who has been exposed needs to be treated. Not everyone who has been exposed is sick. According to Dr. B's guidelines, you have to be sick to have Lyme Disease.
[ 12-23-2010, 06:09 PM: Message edited by: sixgoofykids ]
Posted by Lymetoo (Member # 743) on :
Smile... Those going in to the dr to be tested are likely ILL and having symptoms.. right?
My husband is doing fine also. Maybe one day he won't be. But we've been married nearly 38 yrs and I've had Lyme since I was 8 yrs old.
To say that ALL SPOUSES of LD patients have Lyme is incorrect.
Posted by Tracy9 (Member # 7521) on :
I agree with Lymetoo. I know many couples where one has LD and the other is perfectly healthy. And having seen many pictures of Sixgoofykids and her husband, clearly he is the picture of health, very active, and I've never even heard her mention him having a sniffle.
Also she is better, healthy, eats well, exercises, and is a model for us all to aspire to should we be so lucky to get well like she did!
Posted by Need Lots of Help (Member # 18603) on :
My husband and I both have lyme disease, we both tested CDC positive IGG and IGM, which is rare.
He is more neuro lyme, but somehow he can still work.
I am more arthritic and fatigue type lyme disease and I can't work.
We argued for a long, long time. Until I put my foot down and went out of state for treatment. I refused to let him go with me to the doctor the first time and it was 6 hours away. He was very upset with me doing that. He asked me why. I said, this doctor's apt. was about ME! He wasn't going to go and spoil my mood or bark about money, and he wasn't going to go and sit on this phone and interrupt my apt. After that, he really did a 360. I guess then he believed I was sick. And, about 6 months later the tests confirmed lyme disease made him feel bad about doubting that I was sick. He thought I was faking.
Now, we are closer than ever. We argue sometimes, sure. Mostly about money and lyme treatment because it has sent us to bankruptcy and we almost lost our house, but we are closer than ever. He does way more than his share of everything. I am sooo glad that we somehow got this mess worked out!! The only thing that could be better was if I could get well and do all the stuff he and my daughter want to do!! Oh, and she has lyme too!!
Good luck to you!!
Posted by missing (Member # 22437) on :
to "need lots of help"
yes, we argued a lot too, and that wasn't typical in our marriage. We used to only argue once a year.
We used to have sex everyday, then , right when I got Lyme disease, our sex drives just dwindled. He even had weird pain and numbness during sex, and I had weird numbness too. As we are going through treatment that sex drive is returning. yahoo! which also really strengthens our relationship!
We are closer than ever as well.
His nuero-lyme is really getting better, and even since I posted this , he has improved. We haven't had a fight for a while now.
You are the exact same as our family. My daughter has it as well.
So the stress level here at our house, this past year, has been through the roof.
We have had many answers to prayer though this past month.
My husband just got an easier position at his work that will pay 4x as much!!!, and there is no physical labour,
someone just paid for our daughters tuition to her private Christian highschool for the whole year, even though I said that we would pay for it, but were just a little behind and needed to pay for it next year instead.
and my MIL just gave us some money to help us,,,
one area of prayer is that I have to work double time in a few months, and I am not sure if my employer is going to pay me for it or not.
I need prayer that they will, IT is a lot of extra work and responsibility and I could use the money.
thanks everyone for your wonderful help and replies. I appreciate it.
Posted by Need Lots of Help (Member # 18603) on :
Missing,
Love to hear about the turn around!! May good luck keep coming your way!!
Shalome
Posted by peacemama (Member # 17666) on :
My husband works multiple jobs and is just coming off of a week of double/triple shifts in different restaurants. Okay, well, actually about a month worth.
Part of how he deals with his lyme dx (I was dx in Nov of 08, he was dx in March of 10) is by panicking and overworking. I believe that people can be exposed to Lyme disease and not got debilitated by it. I believe that I have been exposed and undertreated/not treated at least 5 times in my life. I can't imagine that my husband hasn't been exposed at his families cabin.
He was well when I was diagnosed. I believe the stress from my dx and the kids' dx and the financial stress/work stress ran his body down so that the lyme could no longer be kept at bay. I personally think that couples that both partners are not infected are few and far between and I am thrilled for Six and others that their partners are well.
Sometimes my husband tells people that he thinks he gave it to me. It makes him feel better, for whatever reason. : (
We have tapped into every possible resource imaginable. Food stamps, Medical 105 accounts for his business (which lowers his income) and we use food shelves and more.
It's hard to imagine what it would be like if one of us was well. And, at the same time, this is just everyday life for us. We just keep plugging along, wanting a divorce, wanting to run away, hating each other. But we try to use the work of Byron Katie and her books. When I think, "He's an idiot" I ask myself, "Is that really true" and of course my answer is, "No. He's sick and working non stop and tired and scared." He asks himself if I am really a *****. Same answer. No. She is sick and tired and scared.
It's hard work. No doubt. Our neighbors threw us a benefit, we got our mortgage modified, otherwise we would be in so much trouble.
Posted by randibear (Member # 11290) on :
i'm pretty sure my husband has it. maybe not as bad as i do, but he sure exhibits the symptoms.
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xoxo
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