posted
i have a MD father who has asked and ID friend of his about my condition and was told that two weeks of abx does the trick. i of course havent gotten better and as a result i belive he has led my family to believe that i have a mental disease. i have no prof that he has done this but no one in my family believe me on my condition and many are echoing the same things he has said to me, such as LLMD's being rip off artists (ive spend a whopping $650 at my LLMD's office, he hasnt tried to sell me anything). my mother has also tried to tell me that there is nothing wrong with me and i need to see a psychiatrist, i have a hard time believing she came to this conclusion on her own.i guess they just think i spontaneously "turned crazy" after having a bite and positive WB (ive had 0 instances of mental illness in my life, im 31).
he wont talk to me about my condition, ive tried. also others in my family wont take to "open letters to lyme families" and so forth as those on the internet are "a bunch of crazies"
-------------------- sick since 9-09 igg, 18,23,41 reactive igm, 41 reactive Posts: 436 | From Kansas City | Registered: Jan 2010
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posted
Would they watch a DVD? What about getting a copy of the Lyme documentary Under Our Skin? It follows several Lyme patients, plus the politics.
If anyone would care to read something, Pam Weintraub's book Cure Unknown: Inside the Lyme Epidemic explains the politics too.
Also, I see that you are in Kansas City - I believe you have a couple great LLMDs near you. Would they be open to talking with any of them?
If you have had a positive Western blot, then doesn't the fact of a positive test mean anything to them?
An infection needs medical treatment, not psychiatry. Your family needs to be educated somehow.
Posts: 13117 | From San Francisco | Registered: May 2006
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posted
This may sound harsh, but ignore what your family is doing, and get to a good LLMD in your area.
This is your life, and you need to pursue health. They will come around eventually.
The book The Lyme Disease Solution is a great read, and explains much of the controversy and misunderstanding with Lyme. I encourage you to pick it up, read it, and give it to your Dad.
Written by an MD. Remember that your Dad's life is based on the medical community, and the MD community in the US for Lyme is not supportive.
Love your family, but get what you need!
-------------------- Wishing You Showers Of Blessings! Lyme since Fall 1983 = Diagnosed Summer 2008 IV Rocephin 7 weeks Stopped due to drug fever Now doxycycline "For I know the plans I have for you...plans to give you hope and a future." Jeremiah 29:11 Posts: 430 | From Sunny South | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Stick to your guns, but do it quietly with the knowledge that "You will show them!!!".
-------------------- 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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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
This is a good explanation of the 2 standards of care....not that your Dad would read or believe it...but it's good info for you to keep bookmarked...
-------------------- 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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posted
Your dad's your dad. I'm sure he, being an MD, wants to have the answer for you. It's got to be a huge obstacle to admit he doesn't. Any possibility he'll go with you to llmd appointment? Any possibility you'd want that?
Maybe he can have some questions answered to his satisfaction. Maybe it'll help him to understand or to want to learn more about chronic lyme.
My mom's a retired nurse. She doesn't understand the whole lyme thing. She doesn't get how it can be such a "hot potato". I don't either, frankly.
She is supportive, though. When things are explained to her on a technical level, they make sense to her. She can see appreciate the seriousness of this situation.
Posts: 797 | From New York | Registered: Feb 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Would your father like a list of the studies demonstrating the infection persists inspite of antibiotics?
Tell him: You're a physician, you should understand that when there is controversy surrounding an issue as pervasive as Lyme Disease, with the Infectious Disease Society Of America being brought up on antitrust charges for manipulating the treatment of Lyme Disease, that investigation is necessary.
If he's so close minded, perhaps he should not be a physician, because obviously you can't help patients in the capacity they need if you remain obstinent.
-------------------- 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.
The science doesn't lie, but the people who manipulate the studies to fit their best interests do.
The DVD Under Our Skin. I'd buy it, and ask the family if they'd like to watch a movie one night. Instead of telling them what it's about, just tell them, "Don't worry, you'll enjoy it."
It works.
-------------------- 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
would he go with me to LLMD apt? no chance, he wont even talk with me about. reading litt on it also has 0 chance of happening. he is too far gone to convince of anything i just wish he wouldnt poision the waters with the rest of my family. i have a brother i am close to and got into a screaming match with him yesterday, him saying it was "completely insaine" saying i knew more about my condition than my 30 year praticing medical dr father.
i also have a sister who is a ER dr who is now echoing his views.
-------------------- sick since 9-09 igg, 18,23,41 reactive igm, 41 reactive Posts: 436 | From Kansas City | Registered: Jan 2010
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If you can't get them to cooperate and learn with you and try to understand, then just don't share that part of your life with them.
I've learned to keep it on the down low with family and friends for the most part. I just sort of give a brief update if they ask then move onto talking about something else.
Even though my family and friends have been understanding and supportive, I sometimes sense that they may be feeling as if I'm all consumed with lyme, or that I should be well by now, or that I'm treating too aggressively or too long, or that I exaggerate my symptoms....
I don't know.
My mom always comments on how many meds and supplements I take with this sad and disapproving look.
I just tell them that this lyme is proving to be beyond me so I'm trusting the experts to get me well and that treatment is progressing. Period, end of story.
I'm sorry you're dealing with this but like Dekrator said, WE will be your supportive family. And all of us can certainly empathize.
Posts: 423 | From Upstate NY | Registered: May 2009
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
my sister is a radiologist and i know what you're talking about.
they all think i'm a hypochrondriac and make fun of my meds and all.
i'm sorry to say but you'll have to stop mentioning lyme at all. don't even bring up meds or anything.
if you have to take pills, get up and go in the bathroom where they can't see.
i hope you don't live with them.
take it from me, they won't change. i have also an operating room nurse, one floor nurse, and the radiologist in my family. none believe in lyme.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
quote:Originally posted by Topaz: I agree with Dekrator48 100%.
100% with these guys. I'm in remission for 3 years now and if I hadn't moved completely out of the reach of my family, I'd have never made it.
No one has to live your life but you. What's the Nike phrase, "Just do it"!
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I agree with Melody Maker. Your health comes first.
Wasted energy on trying to deal with non supportive people.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
I'm so sorry, JunkYard. When you told us several weeks ago about your father being a close-minded MD I felt so bad for you. I knew it was going to be a tough battle and you just DON'T need that!
Do you live with your parents? I agree with the others.. just don't talk about it. If they ask questions (ha) I wouldn't even tell them anything.
<sigh>
keep us posted .. print off some of the above info and/or bookmark them for your future reference ( for the day when they will listen ).
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
Hey Junkyard....I think it must be the same ID in KC that I went to....I was so hoping that he would have an answer for me since my regular MD had already done a test & found I had tick disease & sent me to the ID. All he did was to waste 45 minutes of my life to tell us how different labs will get different results. Said that if I'd already been on abx for a couple of weeks (which I had) that I would be cured....I did ask for the written ID's report from my MD who sent me there...The very last part of the report said I needed help because I was crazy..Not in those words but it's what his conclusion was...Thank goodness for our LLMD's.
Posts: 75 | From Missouri | Registered: Apr 2009
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posted
i really appreciate everyones advice and support it really means a lot. i understand that a lot of people have to go through this, it just breaks my heart and im not the type of guy to feel that way.
everyone isnt as bad as my immediate family. also i have an incredibly supportive girlfriend. i didnt know until i got sick that i would marry her, now im 100% sure. i feel bad for others who dont have as much as i do as far as support goes. i believe if my gp had told me my WB was negative (it had 3 bands not 5) i would have gone insane not knowing what was wrong with me and a family that wants to justify their apathy by blaming mental illness would have had me committed.
i dont live with my family, lucky me!
its not the same ID dr btw. funny thing she said to me "well all your tests have come back fine, your a really healthy guy. im not saying its in your head i just think it must be something like a virus that has just gone through your system and it will take a few months to get better. i dont think you every had lyme but go ahead and stay on the flygal, i have no problem with that" that last part makes me think that deep down inside she knows that there is high likelihood that i have persistent lyme and she doesnt want my life being destroyed by stopping treatment to be on her conscience.
-------------------- sick since 9-09 igg, 18,23,41 reactive igm, 41 reactive Posts: 436 | From Kansas City | Registered: Jan 2010
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Junkyard, your family is using up your energy that you need to help fight this illness. They are toxic to you. I know that sounds rough.
I know having family support is a blessing for those of us that have it. Especially those that have "medical" family members. To have ones family in the it's not lyme camp is stress.
Consider only discussing your illness if they ask you a question about it. Don't try to defend yourself or make them understand. That uses too much of your energy.
Put YOU first and foremost. Nobody else is in charge of your health and well being. Do what you need to fix you.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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LabRat
Frequent Contributor (1K+ posts)
Member # 78
posted
If your father is a medical doctor and knows nothing of lyme, he must really be out of touch!!! In this day and age, even the dentists have a working knowledge of lyme. My cardiologist has caught three or four cases of lyme this year alone. It's a hot topic in all segments of medicine. He must be an old boy that's skating on his remedial training!
Posts: 1887 | From Corpus Christi, Texas | Registered: Oct 2000
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posted
map, i understand and agree its just hard when they have so many resources (millions of $ as well as medical connections) and im in need of support. i dont need money but support would be awesome. but your right there is nothing i can do and the stess of thier appathy is not good for me.
labrat, hes totaly out of touch but i think there is a deeper reason why peoples familys do this, at leas why mine does. i think its because it "gives them an out". what i mean is if your medicaly sick and they shun you they are bad selfish people. however if your just crazy "there is nothing we can do he went nuts". its an easy way out. no man with commonn sense would belive i went crazy all of a sudden after getting lyme and it not be because of the lyme.
-------------------- sick since 9-09 igg, 18,23,41 reactive igm, 41 reactive Posts: 436 | From Kansas City | Registered: Jan 2010
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I really feel for what you're dealing with right now. I too have an unsupportive family that only cares about themselves. Thus, me and you are on this journey as soldiers my friend.
Do not waste energy trying to prove your case with them. Instead, replace them with people who are supportive of you. You have people here who are going through this too. We can be your family.
I know it's a struggle, and I don't know what kind of financial situation you're in, but if you can make it through this financially alone, we can be here for support. I know sometimes all I want is people to listen to me... to feel what I'm dealing with. Just empathize.
You would think my family would be here to do that, but their not. I'm herxing alone right now with my drunk roommate next door to me. Some support here, right?
We're gonna make it through this. It's people like us that make a difference in this world. Let the zombies believe nothing is happening and live in a world of fantasy. I'm here on Earth for the journey.
-------------------- sick since 9-09 igg, 18,23,41 reactive igm, 41 reactive Posts: 436 | From Kansas City | Registered: Jan 2010
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Wily...the old attack the person instead of the problem thing.
My parents were like that too....I just learned to stay away from them.
This beats me up enough without getting verbally beat up too.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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massman
Unregistered
posted
They are choosing not to understand. IME many people in the health care field are making this choice.
And many families are making this choice. I am not really sure why this is so common. It certainly is one of the most aggravating things that can happen.
You may want to go to www.mercola.com and check out the EFT and / or Meridian Tapping Technique. These can help with supporting yourself.
And great to hear you have a supportive girlfriend.
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posted
SOOO glad to hear that you do not live with them. That helps some! Imagine what it would be like if you had to look at them every single day....with empty eyes staring back at you.
YEA! for the supportive girlfriend. That's awesome!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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I would direct your doctor father to that site or consider printing out at least one of the PDF's.
The Symptoms file would demonstrate the breadth of symptoms attributable to Lyme, and the Persistence file, of course, shows evidence of persistence.
You might also try the highly-documented papers under "Lyme Files" at www.natcaplyme.org. They go to show the published science supporting our side of the debate.
-------------------- I am not a doctor nor a trained scientist. Do not rely upon what I write to diagnose or treat any medical condition.
"Rejoice in the Lord always; again I will say, rejoice!" -- Philippians 4:4
posted
hey t2 that link for lymeinfo didnt work, i may have seen it before tho
i see links to mercola a lot on here do people use this site a lot? i kind of wondered how legit it was when they suggested to put hydrogen peroxide in your ears to avoid colds and flu
-------------------- sick since 9-09 igg, 18,23,41 reactive igm, 41 reactive Posts: 436 | From Kansas City | Registered: Jan 2010
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Dont be overly optimistic with giving your father printed out material.
Those that CHOOSE not to know,,,dont read what was given. IF they do read they dont believe.
IF your giving something to read,,make sure its short and anothers mistake or support.
Like lymedad's letter,,,forgot what its called,,try searching with lyme dad,,,he is an AWESOME guy!!
He didnt believe either,,then came to see the light.
If you give the non believer a stack of 30-100 pages of STUFF to wade thru,,,they wont,,or they will question who wrote it
After all JUST crazy people use the 'internet' and find crazy info!!
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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massman
Unregistered
posted
JYW - I mention Dr. Mercola + his site a lot.
I feel he has very good info + insights on medicine, alt med etc. Most of my opinion is based on my experience as a natural health pro for almost 26 years.
Ask your Dad if he loves you. Then ask if he can watch "Under Our Skin" in a non-judgemental way.
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posted
I think Mercola has interesting information on his site too but I agree with Lymetoo that he has gotten much more commercial in the past few years which lessens his credibility.
Posts: 984 | From San Diego | Registered: Nov 2006
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massman
Unregistered
posted
He states that he helps fund his site with the money he gets from his products.
For years + years BigPharma has helped many docs "push" their drugs. Studies have been faked + not even performed + then lots of docs recommended those drugs.
"Seminars" on cruises were given to docs (and the entire cruise + its costs) by BigPharma. And only God the docs + BigPharma know what else was given to the docs for pushing certain drugs.
Yet Dr. Mercola is becoming less well thought of because he recommends + sells certain products ? He is now a money grubber ?
I have been accused of that, even though I receive no compensation of any kind from the companies whose products I recommend.
I guess that Dr. Mercola + I are both evil !
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
A little melodramatic man. No one is accusing you or Dr. Mercola. Skepticism is not cynicism, we're not the enemy.
I'm with Lymetoo. I read his material sometimes. I think some of it is helpful and others I think are quacky. However, I might think that simply because I don't understand it yet, but in time I've learned to remain curious in spite, because what once seemed absurd later became obvious.
-------------------- 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.
quote:Originally posted by Parisa: I think Mercola has interesting information on his site too but I agree with Lymetoo that he has gotten much more commercial in the past few years which lessens his credibility. [/QB]
Exactly. It loses some credibility.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
There are LLMD's who are psychiatrists. Many symptoms of lyme disease are neuropsychiatric. This may solve both your problems. Your parents will think you are addressing you "mental problems" which you are by treating your lyme disease.
-------------------- Treelady Posts: 39 | From California | Registered: Dec 2009
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