posted
I had a tick bite in Nov 2009, became VERY ill quickly in Dec, hospitalized in Jan and march. Positive Elisa lyme in Jan...told false positive, positive western blot in March...told probably false positve ( I am in the South)! ANyways...started treatment in APril and making slow progress.
Husband informed me today, he is not 100% convinced it is lyme. Afterall "every doctor told you it is not lyme". What the ....!
SO is he assumming I have just lost my mind? Perhaps my muscle twitching and myoclonus/tremors I am faking? I am SO mad I dont know what to do! I thought he was my biggest supporter, but apparantly not!
Posts: 747 | From Utah | Registered: Apr 2010
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posted
Get your husband to watch the DVD "Under Our Skin" with you and talk about it afterward. That helped a lot with my family. Take him to your LLMD appointment so at least he will hear the truth from another doctor.
Don't go to non-Lyme literate doctors, now that you know that you have it. The other ones can't help you, but they can strip your social support by making your husband doubt you, and they could make you worse by giving you steroids or a wrong diagnosis or unnecessary surgery.
If your husband's willing to support you but just confused or uninformed, see if he will read the book Cure Unknown by Pamela Weintraub. One relative of mine read it all the way through, and one read the first third of it.
EVERYONE here has been told we couldn't possibly have Lyme, there's no Lyme in our state. That wildly positive test? Must be a false positive. That negative test? See, you don't have Lyme after all. Go home and quit wasting our time.
That obvious bullseye? Spider bite or ringworm. You're having pain and fatigue? I don't see any sign of it, so you must be making that up. Bedbound and brainfogged? But you look good, and hey, all your tests came back normal--good news! there's nothing wrong with you after all.
You do have Lyme without a doubt? Okay, here's 2 weeks of low dose doxy; now you're cured.
I doubt you really have Lyme--you just need some antidepressants, pain meds, and an internet-ectomy. It's all in your head, you're making yourself sick by worrying too much, you're seeking attention or drugs.
Being told all these outrageous, insulting things over and over by mainstream doctors is part of the common experience of Lyme patients.
It took me a while to understand why. There is a concerted, organized propaganda effort against us and our disease and our doctors.
It is bad enough to have Lyme, but completely awful to have to put up with a political situation, not of our making, where "respected" people who are supposed to help us systematically deny that our illness even exists. They also say we don't deserve any treatment.
Suddenly the usually reliable sources of medical information aren't reliable any more. Your husband hasn't realized this yet.
Also, for a story of a relative who did not believe it and was not supportive at first, but later saw the light and understood, search for a post by Lymedad that was a letter to his daughter, who had Lyme.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
Thanks everyone. He HATES talking or hearing about lyme disease. He has seen video clips of under our skin and I read him parts of cure unknown. I think it is easier to deny than accept. Plus every non LLMD said I was fine.
Thanks. I know several of you have had a similiar situation. And yes, before I got sick I always thought "just get over it" I learned the hard way that it isnt that easy.
Everyone here has been such a big support, thank you. I hate that others are suffering too, but it is nice to know others understand. :-)
Posts: 747 | From Utah | Registered: Apr 2010
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Light, good post.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I've lost patience with those who judge without becoming educated. And, while it's taken me years, I just don't CARE what those uneducated think is wrong with my body. Why should their stupidity and ignorance cause me emotional pain? I don't need that. Been there. Done that. Never again. Not with family members, spouse or even doctors.
This may be very difficult but stop caring what he thinks about this matter.
It's YOUR body, your experience. Do what you need to do Don't give anyone else the power to validate or invalidate your experience.
Separate his opinion from all else. It's his. Don't allow it to smother you.
Don't try to convince or even to educate. Give him a few of the best sources and then leave it up to him. He can educate himself or not - but it's not up for discussion as to what HE thinks this is or isn't. He's not educated himself on the topic in order to have an intelligent discussion about it.
Until he educates himself, there is no discussion. Uneducated comments are not welcome. Just make that clear.
Just don't go there. Don't expect emotional support. It will be easier on you to just keep him at a distance about this until he's done some homework on his own accord.
You can't make him understand. No one can. He has to walk this part of it himself. And so do you. By your taking independence on this issue, it will actually give you a good breath of fresh air and freedom. It's your body, do what YOU need to do for yourself.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
keebler has given you excellent advise.
my husband refuses to even discuss lyme. says its "a woman's excuse to be sick" and other stuff.
soooo, i never mention it. i never tell him when i have an appt, what drugs i am taking, supplements, etc.
i am in this alone, well, except for you guys.
i'm sorry, dear, but you better get used to it.
wish i could be more helpful.
but just remember, most people think doctors are gods and they're 100 right all the time...sad... it's hard to go up against their opinions.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You might also want to reassess your support supplements. Our emotions can be so much more raw from lyme.
Be sure your adrenal support and nerve fiber support is good.
You may benefit by talking with a LL therapist - not just as a sounding board but to help organize a thought plan and an action plan about how to handle all the issues with this very unique and perplexing illness.
Most of us never learned how to properly process our thoughts or emotions in the first place. Communication skills are not highly valued when it comes to emotions. So, with such a life-altering and life-threatening infection, we are at a loss for words. Exploring your communication and processing styles will not only help you get through lyme but also help you get through life with a richer ability to communicate.
If your husband would choose to join you, that could be even better - focusing just on communication styles and sorting out fact from fiction with medical issues.
Your LLMD may have some suggestions for you. The local support group may also know of a good LL therapist. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Well if you have to live with someone, it is rather hard to ignore their opinion.
Posts: 743 | From New York | Registered: Apr 2009
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posted
Agree with keebler on the must be educated before making any suggestion or judgement
Paul
Posts: 925 | From Connecticut | Registered: Aug 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Think of it as politics or hobbies. If they love race cars, you don't have to share their interest or even discuss it. Same if they hold different political views or favor certain sports.
Would your spouse tell you how to vote or how do your JOB or whom to hire at work ? No.
If your partner understood the matters of above choices, you might discuss it together but not if your partner knew nothing about that particular topic. You would do what you knew best.
Well, learning about lyme and figuring out a plan is a JOB. It may help to look at it that way. You are getting training in a new field.
Sure, it is ideal to have an intelligent and supportive partner. But that is not always the case - or at all times about all issues or matters.
Since we can't MAKE someone think how we want them to, the only way I've managed to maintain my sanity is to pull back from my expectations.
To expect too much can be a codependency. To expect too little, though, can be a self-victimization. And this is where the value of a LL therapist comes in.
And this is where we learn to take charge of our own life.
Even in marriage, one partner should never be dumping ignorant judgments on another. Still, when that happens, someone's got to recognize the need to put on a suit of teflon so the crap tossed at them just does not stick. By not allowing abuse (even if from ignorance), it helps our spine get stronger.
Now, if a partner calmly shares that they are just not sure about all this - out of genuine love and concern and, perhaps, as a helpmate to help you figure out what else may be going on -- or what can help along the way -- well, that is different than a judging tone.
We also have to be careful to understand that while lyme is intricate, complex, perplexing --- that it rarely travels alone.
There are usually other infections that go along. So, not everything is lyme. And, even with infections, there are the nutritional deficiencies and overloaded liver issues.
So, no, it's not all "just" lyme --it is a "complex" of many variables.
If a loving partner shares their concerns out of love, that is one thing. Hopefully, the love will open the door, their eyes and their heart and brain to learn more. But we, as the patient, have to drive the boat on this one. It's our job. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I dont advise doing this...but my mean streak is showing. Id tell mine theres strong evidence that lyme can be sexually transmitted. Then if he balked at having sex id ask why cos he didnt believe i had lyme. Of course if he didnt hesitate to have sex then id be outta gas. Im sorry you dont have his support. I cant imagine the person that wont support their spouse no matter what. Hang in with us...youve got support here!
Posts: 624 | From Oklahoma | Registered: Jun 2010
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
Kimmie: You have more than just support here, you have another family. As for what you are going through with your hubby; it's sad & frustrating. But over time I'll just be the changes his tune. Continue to do what you've been doing with your treatment. His lack of understanding can't affect your healing. So you have it 'goin' on!'
I might add, I expected my hubby to be negative. Surprisingly, he has been very supportive, helping out with chores, etc when I was really feeling bad. He could see for himself I was not 'me'....it concerned him.
God love him, he watched 'Under Our Skin' last night! After it was over, I said, "Now you understand why I've become an activist, don't you?" He looked at me & nodded.
So not all family members will be supportive. But lets just chalk it up to ignorance, in some form or another. We can keep on loving them anyway.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I always hate hearing people whose spouses treat them this way. Even worse, I hate when they act like a "father-figure or mother-figure."
That's bull**** when someone doesn't take your word for it when they're the single sole person you share yourself with.
It's just sad.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Lyme and co-bugs have taken away a lot from me, but I've also gained some things like strength, independence, and acceptance (and patience). It would be nice if the important people in our lives would be supportive and understanding, but sometimes that's not how it is. Although it's difficult to forge ahead without that support, ultimately I think it's best to focus on taking care of what I need to so that I can get healthy again rather than on trying to convince anyone of something they clearly don't want to know. Alleviating myself of that impetus leaves me free to concentrate on positive measures that will make a difference and are under my control, and reduces the stress associated with a goal of changing someone else.
I hope that as you continue to do what is best for you, your husband will reevaluate his position. It sounds as if he's struggling with how to align what the regular doctors say with the opposing view of chronic Lyme.
Posts: 212 | From San Francisco Bay Area, California | Registered: Aug 2010
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littlebit27
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Member # 24477
posted
I will admit I didn't read the other posts, but I am just putting in my 2 cents.
My husband was (is?) the same way. He heard all these doctors tell me I have post lyme, or possibly fibro, or RA and he was beginning to believe them.
I posted on here a bit ago in medical asking all kinds of questions about Lyme and post lyme. Maybe take a look at that. It was helpful for my husband to hear what I was saying from a few other people.
I once was told "People don't 'get' it until they GET it" and it is SO TRUE.
I know someone that has Lyme and I didn't understand her pain...now I do.
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Did not read what others wrote.
I have an email friend I met when I was first dx in 2003.
She has 3 doctor's in her family: her husband and one son and a daughter in law.
None are what we call lyme literate and have said some pretty stupid things.
But, I have noticed that she does not try to change their minds.
She just does what she can for treatment and connects with others who understand.
She has a good doc that is lyme literate which helps big time.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Keebler
Honored Contributor (25K+ posts)
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posted
- kam,
Good example. Sad that her family is not even wanting to become lyme educated and supportive but good for her to be independent enough to know that if she is drowning it won't help to grab onto anyone not trained or well enough equipped to buoy her up.
Primary focus has to be on the task at hand. She has to make thinks happen for herself.
From similar experiences, while there is a mix of emotions and wishes, I eventually wind up thinking far less of those around me who are just not interested enough to learn the truth. It's almost more painful to see their lack of backbone to learn than to feel the lack of support. But, primary focus on the task at hand.
If all hands are not wanting to be on deck, the boat still has to leave. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
You all are wonderful and thank you for your support and understanding.
I have met some of the most brilliant, strong people here on LN. ALthough I dont know you personally, I know you and your stories. I follow everyones post and feel the pain you all suffer as well. You all are such amazing people.
Everyone is so knowledgeable of their disease and medications. I have received wonderful information medically and emotionally from all of you. We are in this together and I appreciate it so much. You all keep me fighting the fight. Thank you again.
Posts: 747 | From Utah | Registered: Apr 2010
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
just as an aside, my sister is a radiologist and my aunt is an operating trauma room nurse.
neither one of them believe in lyme -- at all!!
i've given up and never mention it around them.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
I think lyme (and maybe other illnesses) show you what your friends and family are really like. It can be a nasty shock. But you have to remember, that despite these people, your life is valuable and you have to do everything you can to protect it. If that means distance from non-supporters, maybe that is the right course for self-preservation. Especially if they try to prevent you from getting the treatment you need, or make you feel worthless.
Keebler is right.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Kimmie, I feel for you. I've skimmed the responses and I see you've gotten some good advice here. I want to repeat something John S said: It's hard to ignore your husband's opinion.
Especially when family finances are re-routed toward an expensive, long term treatment plan. For most people, this will be an issue that can't be ignored.
Reading Lightattheend's 1st post, you can't deny this stuff is hard to swallow. I would caution you about information overload. Just a word from my experience, people can become alienated and think you've fallen in love with the idea of being seriously ill when you're really not.
Likely your husband knows "something" is wrong and the doctors you've seen can't fix it.
Hopefully, he will take the position that "it's worth it if this guy can fix you" like my husband says. (This guy being my llmd) worth it not just financially, but the herxing, the travelling to appointments, etc.
It really helped my husband to come to my first appointments with my llmd. The first time we had a consult after the exam. All questions were answered, things were explained thoroughly. After the bloodwork came back, there was more of the same.
He still comes, but usually it's just to drive me. He brings a book while he waits now.
Communication is important just as it is with any aspect of marriage. Just remember effective communication goes two-ways.
Posts: 797 | From New York | Registered: Feb 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Not sure if this will help Kimmie, but here are two resources that I think may.
posted
A lot of meat in these posts, good counsel and encouragement.
I want to add that even supportive people can be dealing with their own matter of adjusting to chronic illness. There is a grieving process.
Life as we know it is snatched and that affects loved ones.
Grief includes shock, numbness, anger (including raging ranting or maybe "hating hearing aobut lyme"?) and denial and sadness and numbness before acceptance.
Bargaining to try to make it go away and life as it was known return like if it' not lyme then it is something not like "this" and can go away or go away faster.
And these aspects are not an orderly progression...
Even those of us who have it can experience this. And that is not to replace what has been said but to offer that into the picture.
Probably not just one thing but a mixture. Praying he turns around while you learn to take care of yourelf emotionally as well.
Hard I know when our own sense of wellbeing is compromised so often.
-------------------- Not everything in life that can be counted counts and not every thing that counts can be counted...Albert Einstein Posts: 208 | From Northeast | Registered: Aug 2010
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