posted
So my wife and kids are suffering from Lyme and I send a video link from Daryl Hall talking about the disease and I ask the family to please keep them in their thoughts and prayers.... I get this from my wife's brother...see below I would include my response but it had too many four letter words.
First of all I dont beleive you have Lyme disease, I have checked the statistics and the CDC has reported hardly any cases in this area. The primary cases are in the northeast and the Michagan pennisula. Also, you are not an avid hunter or outdoorsman spending time in the woods.
Secondly I researched and it hasnt even been proven that it can pass through the placenta so your children dont have it either.
Thirdly, I think you have Munchausen and Munchasuen by proxy. See the link for information. In a nutshell having a sister with spina bifida and other events in our childhood makes you crave attention you feel you never got. This deficit has even manifested itself in your thinking your children have it. http://kidshealth.org/parent/general/sick/munchausen.html
Lastly, if you want any assistance from me I want you to have an independent test done by Dr.Graham or Lee infectious disease speacilists at Memorial and I want to be present when they discuss the results of the tests. What I really think you need is counseling. Please do not send me any more of your information on Lyme disease.
Posts: 52 | From Illinois | Registered: Nov 2009
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posted
You ask for PRAYERS and thats what you get?!? He makes these demands over a PRAYER request? And people think IM nuts. You need to send him some links of your own. Theres tons out there about misinformation, unreliability of testing etc. Probably wouldnt make a difference since it sounds like he has his mind made up. Id do it anyway. Im sorry.
Posts: 624 | From Oklahoma | Registered: Jun 2010
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Reprehensible. Cruel. Arrogant.
I am so sorry. Glad you got to work out your vocabulary, though!
posted
I dont know what to say other than how ignorant.......bet hell change his tune.....when hes out and about enjoying the good weather and finds a tick attached to his or his kids leg.......then who will he turn to for advice........I wish you well with that.........
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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posted
shockingly cruel reply.I hope you're able to steer clear of him in the future. He has serious issues and you and your family don't need to be subjected to such significant negativity. Sorry you had to experience this.You'll find great support here.
diana
Posts: 857 | From northern california | Registered: Dec 2009
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posted
Thanks so much I have to vent this out...turns out her mother (yes my wife's mother) feels the same way. My wife has been batteling illnesses for years and they can never pinpoint it to anything...DUH if they would only take the time to look beyond the CDC statistics. Worst of all they have NEVER asked us what information we have or how we arrived at the diagnosis for her and the children. Some people are so cruel and they chose to respond in this manner because I asked for a simple thought or prayer. I feel like we are unknowingly in "under our skin part two" Thanks for the support, I am on here almost everyday trying to find answers for my wife and kids...
Posts: 52 | From Illinois | Registered: Nov 2009
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
hey tmcm. Check out the post in general support that I posted about the article in the wall street journal. Keebler posted the link.
You REALLY need to send them that and see what they say. I can't stand people's ignorance.
You reap what you sow...they ought to keep that in mind.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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posted
These people have more issues than just lack of understanding about lyme disease. Maybe some distance is needed. I know you need support, but this ain't it, so look elsewhere for it. That is why a lot of people come to this website.
Chronic illness is very threatening to families, and some do not react in a helpful way.
Posts: 8430 | From Not available | Registered: Oct 2000
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
I'm amazed & apalled at the response from your brother. As a Qualified Mental Health Professional, I give my brief assessment of him:
"Pompous A##Hole".
My guess is that he's the one with the emotional problem, needng to feel superior by grabbing at the insecurities & misunderstandings of others. He's go the 'little man syndrome'.
He's lying if he said he did lots of research. If he had, he would find the truth that WE know..it's all over the internet.
You are a worthy human being justified in your anger. I stand with you.
-------------------- 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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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
quote:Originally posted by kidsgotlyme: hey tmcm. Check out the post in general support that I posted about the article in the wall street journal. Keebler posted the link.
You REALLY need to send them that and see what they say. I can't stand people's ignorance.
You reap what you sow...they ought to keep that in mind.
Kings: Where is this link? And post....having trouble locating it. Blame it on Lyme brain.
-------------------- 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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Also, in my opinion, a lot of so-called "Munchausen" is due to people being mocked, belittled and discounted when they or their children have an invisible and not-understood physical disease, such as 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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-------------------- The closer you get to G-D The closer He'll get to you.
Be who you are, and say what you feel...the people who matter don't mind...and the people who mind , don't matter. Posts: 98 | From In the woods by a stream in beautiful Catskills NY | Registered: Jun 2010
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posted
Tell u what...im praying for you and your family. And you dont have to see any doctors for me to do so. Youre all in my thoughts as well. Im praying for your BIL as well...he needs an intervention of the divine kind.
Posts: 624 | From Oklahoma | Registered: Jun 2010
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Secondly I researched and it hasnt even been proven that it can pass through the placenta so your children dont have it either.
What a A##HOLE. Let's see, it hasn't been proven, therefore I can declare that it is so. He's saying he knows for certain what scientists themselves don't know.
Posts: 743 | From New York | Registered: Apr 2009
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posted
At least you know for sure where he stands. Maybe it's better than thinking you might have a support network, then finding out what you thought was there really isn't.
Well, I guess that's what happened... sorry.
It was so mean-spirited. That's his issue.
Posts: 797 | From New York | Registered: Feb 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Ask him if he's like a blood transfusion from you to prove his confidence in his theory.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Well, you simply CAN'T send him anymore information. He's told you not to do so. It is very clear that he believes the "Munchausen and Munchasuen by proxy" and he will not be changing his mind anytime soon, if at all.
Actually, MANY parents of children with lyme have been accused of Munchasuen by proxy. Very sad, indeed.
As painful as it may be, your wife may consider divorcing her brother, to a degree. If her parents are alive, obviously for holiday gatherings, it would be hard to avoid her brother.
If he has kids, you'd not want them caught up in this, either. However, consider the extreme point of view -- and his absurd and invasive requirements if he were to even consider helping - and he closed the door.
I think protective emotional boundaries must be drawn by you guys, mourn the loss of relationship and move on.
Dealing with the scars of what he wrote will take time but I firmly believe that you/she need to cut communication with him for the health of your family. Don't waste the energy. Don't set yourself up for his ignorance and abuse.
He is the one who has closed the door. It's important to respect his desire to be cut off from his sister and her family at this time.
I also think it's good to not bad-mouth him to other family members, but think of a few tight phrases to explain that he simply does not choose to learn more and as your family is focusing on getting better, it's just too hard to be around someone who does not understand. And leave it at that.
While only once did my father called my a hypochrondriac at a family dinner, no one said a word and no one in my family ever asks how I REALLY am. If I mention lyme, you can almost hear them roll their eyes over the phone.
But I have thousands of miles between myself and family. And that help. I can hide my illness when we just talk on the phone now and then. I had to drop long ago the "it's not supposed to be like this" or "I'd sure want to know more about what they are dealing with" stuff. Holding onto what should be is exhausting.
Still, I know how devastating this can be so I do hope you have kind, intelligent and nurturing people in your circle of friends. -
[ 08-12-2010, 02:34 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I am curious as to the line of work of your brother in law. If he went to college, what course of study?
I also hope that he does not know the name of your wife/children's LLMD. I hope no one in your family does as he'll find out then. With his fervor to have jumped to Munchausen and Munchasuen by proxy - he could make trouble for the LLMD. It's happened time after time by some family member. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Guys thanks for the advice, support and kind words. After my four letter word frenzy I simply let him know tht I would happily honor his request and he will never receive any correspondence from us again. I truly believe what hurt my wife the most was how her mother defended his cruel message as him careing for our children. Sad indeed, guess the good thing is that in their ignorance for the truth, they have never asked what LLMD we are seeing or anything about him and I doubt they will expend any energy in finding out who he is. In the end I don't think they care and when my wife and kids are better, they will know how wrong they were!
Posts: 52 | From Illinois | Registered: Nov 2009
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I think he has a physiology degree, wanted to go pre med but didn't and now works in an IT department. Too bad the world missed out on a potential great doctor with an even better bedside manner!
And Clearly he slept in a Holliday Inn last night.
Posts: 52 | From Illinois | Registered: Nov 2009
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posted
A tangent, but anytime you hear "there is no evidence that" or "it has not been proven that" (from the IDSA, relatives, doctors, etc.) that frequently means that no research has been done on the topic. In the case of Lyme and tick borne diseases, research may never be done on some topics, if the IDSA controls the disposition of most or all of the research money. So "lack of evidence" means pretty much nothing.
It may also mean that whatever research was done was inconclusive, so the answer to the question that study asked is still not known.
If a thing has not been proven, that does NOT mean it has been DISproven.
Furthermore, when family members make ridiculous statements about science and they are not scientists or doctors, they probably know nothing about what research might or might not have been done on the subject. They are just asserting their own biased opinions as if they were facts. If they know a little about science, they may believe they know everything, which is even worse.
-------------------- 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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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Most people - even most doctors - too easily accept "no evidence" when ILADS & other groups have shown over and over that there IS a lot evidence. And there is also a lot of good insight that has been categorized and explored.
Those who hide under the cloak of "no evidence" just are not looking at the real evidence. There is a ton of it. Just not in JAMA or NEJM or with the IDSA. But there is a ton of good research and insight in this field if one is wise enough to ask those who know.
In addition to ILADS' site ( www.ilads.org ), here's just one of many other good sites to check out:
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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