posted
I had been telling my husband for years that something was wrong with him, and it was probably Lyme. For years, he just told me he's lazy, impatient, has poor posture, has prior injuries, is stupid, etc.
But, I knew better because this is the same man who would get up at 5am and drive to a ski resort & ski black diamonds all day. Then get up and do it the next day. And then go work a 60 hour week.
Over the last few years, we did less and less, but he always blamed it on my sickness, not his. Now the best we can do is play some computer games & make it to the doctor's office. Neither of us have been able to work full time in years. (Thank God for my long term disability!)
When I started my treatment for my Lyme relapse 3 years ago, he agreed to see the doctor in case it passed back & forth. His test was equivocal, so he insisted he didn't have Lyme.
Then, last summer, his knees got worse, and never got better. He blamed it on a bike crash a couple years prior and said it was no problem. Despite the fact that he limped severely when he walked, and was no longer able to mow the lawn.
Last month, I was diagnosed with mycoplasma along with my Lyme & Erlichia. Since myco's pretty contagious, we agreed to test my husband, so he didn't give it back to me.
Just in case, my doc also ordered tests for Lyme & co. Guess what? Yep, you guessed it. He was positive. Now he's FINALLY agreed to start IV treatment.
Now I need some advice:
*Have you been in this situation before?
*What did you do to convince your loved one they really needed to seek treatment?
*How did you keep them on treatment? I know he's going to balk after a couple months. We think he's had it since at least his Bell's Palsy incident in 1996.
*Any other advice helping him deal with this? He gets Lyme rages sometimes, though of course, he shrugs them off as well.
Posts: 168 | From Delaware | Registered: Aug 2005
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Daze
Below is a link to LN pages where members tried to talk Pinster into getting help-
Many Good posts there - one I wrote is on page 3 I think Hope this helps --Jay--
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
He is scared.
But once he starts feeling better.. and I suggest you write down EVERY symptom you can think of that he has NOW... so you can check them off as time passes and he can SEE the progress...
He should be able to see it is helping him.
If he can't see the progress on paper... he will probably try to write off any improvements... even when you notice them.
Otherwise.. leave him alone and let him come to you with questions or for help. Chances are once he gets use to it.. he will quickly become too big for his britches.. and spouting off to others it "ain't that bad".... so just let him have at it.
And when it is herxing time... give him some extra space and let him do for himself a while. He will appreciate you even more after that.
And the cranky will be much less hopefully with you out of site.
i finally got my hubby to agree next office visit, we'll get him on doxy.
after my positive western blot igm/igg from igenex; i had him tested too.
my 1st, beginning to learn llmd, stated NO, he doesn't have lyme. but using tutu's dr. c's W.B. explanation of numbers; HE DOES!
he also has had terrible tremors starting 20-25 years ago when he got terribly sick losing 100 lbs.
last 5-6 years, tremors are the NON-STOP ROLLING TYPE! so lately, neurologist put him on AMANDATYNE, sp, which helped for a little while and they were back full time.
dr. increased dosage by 1 pill daily. BAD NEWS! hallucinations, non-stop talking all night long, anger rages, etc.
so i called dr. and he stopped taking extra one.
then dr. put him on new one for his PARKINSONS advanced symptoms now. ... no progress.
so whenever is his NEXT scheuled appt, i'm going to get him on doxy, and see what happens.
i wish you the best with your stubborn hubby too!
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Sounds like my DH.
Congratulations, you have done the hardest work; getting him tested and starting treatment is a major accomplishment!
As far as keeping him in treatment long enough to make a difference; positive reinforcement can help. I found this article quite helpful!
***
June 25, 2006
NY Times What Shamu Taught Me About a Happy Marriage By AMY SUTHERLAND
AS I wash dishes at the kitchen sink, my husband paces behind me, irritated. "Have you seen my keys?" he snarls, then huffs out a loud sigh and stomps from the room with our dog, Dixie, at his heels, anxious over her favorite human's upset.
In the past I would have been right behind Dixie. I would have turned off the faucet and joined the hunt while trying to soothe my husband with bromides like, "Don't worry, they'll turn up." But that only made him angrier, and a simple case of missing keys soon would become a full-blown angst-ridden drama starring the two of us and our poor nervous dog.
Now, I focus on the wet dish in my hands. I don't turn around. I don't say a word. I'm using a technique I learned from a dolphin trainer.
I love my husband. He's well read, adventurous and does a hysterical rendition of a northern Vermont accent that still cracks me up after 12 years of marriage.
But he also tends to be forgetful, and is often tardy and mercurial. He hovers around me in the kitchen asking if I read this or that piece in The New Yorker when I'm trying to concentrate on the simmering pans.
He leaves wadded tissues in his wake. He suffers from serious bouts of spousal deafness but never fails to hear me when I mutter to myself on the other side of the house. "What did you say?" he'll shout.
These minor annoyances are not the stuff of separation and divorce, but in sum they began to dull my love for Scott. I wanted -- needed -- to nudge him a little closer to perfect, to make him into a mate who might annoy me a little less, who wouldn't keep me waiting at restaurants, a mate who would be easier to love.
So, like many wives before me, I ignored a library of advice books and set about improving him. By nagging, of course, which only made his behavior worse: he'd drive faster instead of slower; shave less frequently, not more; and leave his reeking bike garb on the bedroom floor longer than ever.
We went to a counselor to smooth the edges off our marriage. She didn't understand what we were doing there and complimented us repeatedly on how well we communicated. I gave up. I guessed she was right -- our union was better than most -- and resigned myself to stretches of slow-boil resentment and occasional sarcasm.
Then something magical happened. For a book I was writing about a school for exotic animal trainers, I started commuting from Maine to California, where I spent my days watching students do the seemingly impossible: teaching hyenas to pirouette on command, cougars to offer their paws for a nail clipping, and baboons to skateboard.
I listened, rapt, as professional trainers explained how they taught dolphins to flip and elephants to paint. Eventually it hit me that the same techniques might work on that stubborn but lovable species, the American husband.
The central lesson I learned from exotic animal trainers is that I should reward behavior I like and ignore behavior I don't. After all, you don't get a sea lion to balance a ball on the end of its nose by nagging. The same goes for the American husband.
Back in Maine, I began thanking Scott if he threw one dirty shirt into the hamper. If he threw in two, I'd kiss him. Meanwhile, I would step over any soiled clothes on the floor without one sharp word, though I did sometimes kick them under the bed. But as he basked in my appreciation, the piles became smaller.
I was using what trainers call "approximations," rewarding the small steps toward learning a whole new behavior. You can't expect a baboon to learn to flip on command in one session, just as you can't expect an American husband to begin regularly picking up his dirty socks by praising him once for picking up a single sock.
With the baboon you first reward a hop, then a bigger hop, then an even bigger hop. With Scott the husband, I began to praise every small act every time: if he drove just a mile an hour slower, tossed one pair of shorts into the hamper, or was on time for anything.
I also began to analyze my husband the way a trainer considers an exotic animal. Enlightened trainers learn all they can about a species, from anatomy to social structure, to understand how it thinks, what it likes and dislikes, what comes easily to it and what doesn't.
For example, an elephant is a herd animal, so it responds to hierarchy. It cannot jump, but can stand on its head. It is a vegetarian.
The exotic animal known as Scott is a loner, but an alpha male. So hierarchy matters, but being in a group doesn't so much. He has the balance of a gymnast, but moves slowly, especially when getting dressed. Skiing comes naturally, but being on time does not. He's an omnivore, and what a trainer would call food-driven.
Once I started thinking this way, I couldn't stop. At the school in California, I'd be scribbling notes on how to walk an emu or have a wolf accept you as a pack member, but I'd be thinking, "I can't wait to try this on Scott."
On a field trip with the students, I listened to a professional trainer describe how he had taught African crested cranes to stop landing on his head and shoulders. He did this by training the leggy birds to land on mats on the ground. This, he explained, is what is called an "incompatible behavior," a simple but brilliant concept.
Rather than teach the cranes to stop landing on him, the trainer taught the birds something else, a behavior that would make the undesirable behavior impossible. The birds couldn't alight on the mats and his head simultaneously.
At home, I came up with incompatible behaviors for Scott to keep him from crowding me while I cooked. To lure him away from the stove, I piled up parsley for him to chop or cheese for him to grate at the other end of the kitchen island.
Or I'd set out a bowl of chips and salsa across the room. Soon I'd done it: no more Scott hovering around me while I cooked.
I followed the students to SeaWorld San Diego, where a dolphin trainer introduced me to least reinforcing syndrome (L. R. S.).
When a dolphin does something wrong, the trainer doesn't respond in any way. He stands still for a few beats, careful not to look at the dolphin, and then returns to work.
The idea is that any response, positive or negative, fuels a behavior. If a behavior provokes no response, it typically dies away.
In the margins of my notes I wrote, "Try on Scott!"
It was only a matter of time before he was again tearing around the house searching for his keys, at which point I said nothing and kept at what I was doing. It took a lot of discipline to maintain my calm, but results were immediate and stunning. His temper fell far shy of its usual pitch and then waned like a fast-moving storm. I felt as if I should throw him a mackerel.
Now he's at it again; I hear him banging a closet door shut, rustling through papers on a chest in the front hall and thumping upstairs. At the sink, I hold steady. Then, sure enough, all goes quiet. A moment later, he walks into the kitchen, keys in hand, and says calmly, "Found them."
Without turning, I call out, "Great, see you later."
Off he goes with our much-calmed pup.
After two years of exotic animal training, my marriage is far smoother, my husband much easier to love. I used to take his faults personally; his dirty clothes on the floor were an affront, a symbol of how he didn't care enough about me.
But thinking of my husband as an exotic species gave me the distance I needed to consider our differences more objectively.
I adopted the trainers' motto: "It's never the animal's fault."
When my training attempts failed, I didn't blame Scott. Rather, I brainstormed new strategies, thought up more incompatible behaviors and used smaller approximations.
I dissected my own behavior, considered how my actions might inadvertently fuel his. I also accepted that some behaviors were too entrenched, too instinctive to train away.
You can't stop a badger from digging, and you can't stop my husband from losing his wallet and keys.
PROFESSIONALS talk of animals that understand training so well they eventually use it back on the trainer. My animal did the same. When the training techniques worked so beautifully, I couldn't resist telling my husband what I was up to.
He wasn't offended, just amused. As I explained the techniques and terminology, he soaked it up. Far more than I realized.
Last fall, firmly in middle age, I learned that I needed braces. They were not only humiliating, but also excruciating. For weeks my gums, teeth, jaw and sinuses throbbed. I complained frequently and loudly. Scott assured me that I would become used to all the metal in my mouth. I did not.
One morning, as I launched into yet another tirade about how uncomfortable I was, Scott just looked at me blankly. He didn't say a word or acknowledge my rant in any way, not even with a nod.
I quickly ran out of steam and started to walk away. Then I realized what was happening, and I turned and asked, "Are you giving me an L. R. S.?" Silence. "You are, aren't you?"
He finally smiled, but his L. R. S. has already done the trick. He'd begun to train me, the American wife.
Amy Sutherland is the author of "Kicked, Bitten and Scratched: Life and Lessons at the Premier School for Exotic Animal Trainers" (Viking, June 2006). She lives in Boston and in Portland, Me.
Posts: 2557 | From home | Registered: Aug 2006
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Used to be an elite athlete and sucessful executive.
Got lyme that went mis dx for 3 months- was really ill. Then got 2 weeks of abx. Kept going back to Dr telling them I was not better. After 8-9 months I just gave up. At this time was 70-80%, but symptoms would come and go.
Fast forward over the next 9 years I could always explain away my symptoms to (Whatever), but me and wife always argued about Lyme. She said it's lyme- I said no.
Then she got Lyme and ended up at LLMD. By this time we had both learned more and I was not doing well. At my routine physical my Dr ran a WB test as I told him that I had ongoing symptoms etc. Came back with 10 positive bands.
After this and finally realizing that I was really ill- I agreed to see the LLMD.
Guess what- tested off the charts for babesia and bartonolla. Nowunder treatment for 5 months feeling better, but not well. Unable to work or do much of anything that requires follow through.
One thing I realize about Lyme is that it makes you sick, and the mental/cognitive issues help mask the disease. i.e. your sick, but you dont really know it or care.... days, weeks and months go by and your just getting by.
Now after treatment I can really begin to tell how sick I have been. I have a ways to go-- but I think Lyme Denail especially for men is quite normal.
We dont like doctors, and are too proud to accept that somthing might be wrong with us. We would prefer to be left alone to suffer and justify our problems to somthing other that a disease-- especially one that is as vague as Lyme.
I now am a 100% Lyme believer and just wish that I did not give up on treatment or finding a more qualified specialist years earlier.
Anyway your problems with your husband & Lyme denial are quite normal. He just needs to get treatment. Then after a few months he can decide what works for both of you.
-------------------- Positive 10 bands WB IGG & IGM + Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest
May 2008 Volume 39 Number 5 LABMEDICINE www.labmedicine.com - American Society for Clinical Pathology
Chronic Bacterial and Viral Infections in Neurodegenerative and Neurobehavioral Diseases by Garth Nicolson, Ph.D.
-
[ 22. June 2008, 10:09 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Vermont...
HA! I laughed all the way through that article! And the funny thing is.. she is right.
I don't know how many times I would be doing something.. or doing nothing and just resting.. and I would hear the old familiar... "I can't find my whatever (favorite shirt, etc). Where did YOU put it?"
My answer would always be the same.
"I put it in your closet."
He would say.. "but it isn't in there now. I've looked and I can't find it."
I would then stop what I was doing.. struggle over to climb a flight of stairs... go to the closet and push past him as he would be looking in the closet as if there was a naked girl in there...
Then I would reach in.. and in less than 3 seconds... pull out the shirt.
Of course, this was annoying for me... and I wasn't able sometimes to contain that feeling.
The words.. are you blind or just stupid... would sometimes slip out of my mouth... like she said.. often when I was in the next county... and he would hear me... although he is nearly deaf.
Anyhow.. after years of this same behavior... I decided that was it.... and I stopped running to the rescue.
I would still hear the same old... "where is XXXXX? I can't find it."
I would reply, "it's in your drawer in the bottom of the dresser... or in your closet.. or whatever"...... then wait for the next response from him...
"But I can't find it."
At that point I continued what I was doing and ignored him.... and it would take a while... but eventually I would hear...
"Nevermind, I found it."
Years later he finally figured out that I was not coming to his rescue on purpose. Since then... unless he REALLY can't find it... and has tried looking several times.. will I attempt to help.
BUT... I didn't know this would work with other things. I will certainly have to make a list and try it out!
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
ummm, hey tin, were you married to my husband before i was????
cause i swear mine does the EXACT same thing...
just kiddin...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi Tincup,
First, congratulations on becoming a grandma!!! That is very happy news.
Yes, isn't that article a HOOT! Best yet, the methods work! Sounds like you figured that out on your own with your DH. Posts: 2557 | From home | Registered: Aug 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
My husband was in denial with my Lyme diagnosis.
So, when he started getting really sick, I told him he needed to be tested for Lyme.
Nope. He thought it was his testosterone levels.
He had his testosterone levels checked and also had an Elisa done.
The Elisa was positive.
So, Igenex testing next followed by an appt with my LLMD.
He did better with treatment but has a really hard time with antibiotics.
He also doesn't follow a good diet, take supplements, take probiotics, etc.
Now I can say the same thing to him as my neighbor's do (they are both RN's).
They have learned Lyme from ME.
However, he will listen to my neighbors over me.
So, he's started treatment and stopped treatment.
Started again and then stopped again.
Recently due to significant blurry vision did another antibiotic challenge.
Herxed big time and now is on treatment again.
His vision cleared within one week.
So, I guess I just gently suggest things I know he should do.
Then I ask my neighbor's to tell him the same thing.
He is a much nicer person (unless herxing) when treating.
Hang in there. Let the LLMD outline his treatment.
Maybe let him go by himself for the visit.
I think men are more likely to show a less stoic or brave face when we are not around.
At least my former marine is.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
Thank you all for your replies & advice. I think now that there is a black and white piece of paper with test results, he's more convinced. His scientific mind balked without a solid positive result.
He did say something funny to me today. He had an appointment with an orthopedic surgeon yesterday for a knee problem that has been going on for years.
Apparently the doc rolled his eyes and then lectured him about Lyme not being the problem. (A PCP I was evaluating did the same thing to us a few weeks ago.) So, now my husband is sitting here, thinking up ways to respond to ducks who go off about chronic Lyme. So, he's inspired to fight simply because the ignorant doctors made him mad. I guess that's a good thing, huh?
So far, his favorite is something like: "How about you stop lecturing and find out what's wrong with me, since you're convinced it's not Lyme?"
Posts: 168 | From Delaware | Registered: Aug 2005
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posted
Hey, that sounds like me. My wife had Lyme for years, so she is very familiar with the symptoms and the seriousness of it. I complained about symptoms for several years, but because they felt minor to me, I kept shrugging them off, thinking I was just getting old. Apparently my wife didn't think they were so minor, since one time after exerting myself in the heat I collapsed and couldn't move for about an hour. Even after that I stayed in denial.
My wife scheduled the IGeneX blood test for me and dragged me to the doctor. Thank goodness I didn't know it was a $600 test or I would've refused. I went along to be congenial.
Turns out I was positive for Lyme, Babesia, Erlichia (and now Mycoplasma and Epstein Barr). Even after the results came back I stayed in denial. My wife had to schedule my doctor's appt.
I've been in treatment now for about 2 months with weekly IVs. When I tell people I'm getting treated for Lyme, I still tell them I didn't really have any symptoms. Later on in private my wife always confronts me and asks why I say that, and I usually try to make up an answer.
I suppose, as a guy, it's really hard to admit I'm sick. Heck, it's hard now typing this. Being sick seems like an admission of weakness or failure or something. It's easier to say "yeah, the blood test came back positive, I feel fine, but I'm going to get treated anyway." I'm one of those guys who hasn't seen a doctor in 20 years. I won't go even if I have the flu and feel like I'm going to die.
By the way, here's one of my original posts when I was struggling with the positive test results and hadn't yet started treatment. Thre responses to this post helped kick me in the butt and get to the doctor:
posted
Realist, thank you so much for sharing your story. It sounds amazingly like my own. I am the one who ended up out on disability from work (still am). And, I pushed hard on my husband because I didn't want him to ever feel as bad as I do.
My husband and I blamed so much on being out of shape and getting older. Though, how we could really be out of shape when we biked or skied or did some other major physical activity fairly regularly, I don't know. We just ignored the fact that I sometimes almost blacked out when mountain biking. And he could no longer ski black diamonds like he used to. After all, we're in our 30s now and our friends complain about similar things sometimes, so we were "normal".
I shrugged off many minor symptoms over my 10 years of "remission", until I was flattened by my vertigo. I had knee problems, heart problem, dizziness, near fainting, migraines that flattened me, tinnitus, and other weird but "minor" symptoms.
I went to so many doctors over the years. And the only reason I would go so much was because I realized I had waited too long when I was diagnosed with Lyme the first time, and I didn't want to ignore a major problem and get knocked out again.
My first time around, I almost dropped out of college. I ended up not attending classes for 3 or 4 months, and only by the grace of my professors did I pass. I even had to infuse an IV during a final exam once, with my husband's help.
Prior to Lyme, I had been a 4.0 student, pre-med. Unfortunately, I've never been as smart as I was then. And, with active symptoms now, I am even dumber than I was the first time.
My husband wouldn't even know he had Lyme if I hadn't asked him to get tested about the mycoplasma. He actually got a Quest Lyme test from his PCP that was negative a couple weeks before. This happened because I forced him to make an appointment about his horrible knee condition, and he admitted taking naps in the afternoon to the doc.
We actually blamed our failure to communicate well sometimes on my Lyme. But, as we looked into it more, I realized he would make very vague comments that made sense to him, but left me dangling wondering what the heck he was talking about. We both get "trains of thought derailed" quite frequently, so anyone listening to our conversation would either be totally confused, or laughing their butts off.
He's been so fussy about his PICC line, I know he's not feeling well. I think he's focusing on the PICC because he can admit it's bothering him without thinking he's a weakling. Yet, the other symptoms make him feel less than manly, so he tries to ignore them.
I'm glad to hear your story and to know I'm not alone. Hopefully others can give equally useful information and advice.
P.S. I told my husband if he's herxing, I won't share a room with him. One of his symptoms is easy frustration that makes him angry. I don't want to be the trigger for a full out rage or to make things worse in any way. It was hard enough to get him on the meds, I don't want to give him an excuse to get off them. Posts: 168 | From Delaware | Registered: Aug 2005
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