posted
Hello, To make long story with many symptoms, short. here we go.
1) I live in Minnesota.
2) I had a wood tick bite which formed red bump that lasted 2 weeks.
3) I had rash over 90% of my body.
4) I counted 28 symptoms on the lyme symptom check list. All started after tick bite.
My Dad, My sisters, my mom. They don't believe me. Hell my Girlfriend of 15 years don't believe me.
What Is so hard to believe about that.
I tell them I was bitten by Tick. Now im in world of hurt. They Don't believe me. My children 10 and 12 are the only ones that will believe me. When I say "I was bitten by tick and now I almost sure I got Lyme."
I guess its just that hard to believe.
If I said I think I got HIV. they would probably believe DAM Last thing I need is to be constantly trying to make them understand.
Is it really that hard to believe?
-------------------- Live to love another day Posts: 32 | From Minnesota | Registered: Dec 2013
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posted
I really need someone that can understand me..
someone to talk to..
I feel so alone..
I didn't choose this hand, It was dealt to me.
Im going to bed
-------------------- Live to love another day Posts: 32 | From Minnesota | Registered: Dec 2013
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
ALMOST ALL OF US GO THRU THIS. sorry bout caps. many more will come and give you ideas. probably slow cuz of holiday.
most important is have you found an LLMD and are you getting good treatment. whether you have or not this is a good place to be to learn how to get better and how to handle the way your loved ones are treating you.
for sure you are not a lone
there are videos and books that sometimes help a family understand. but the truth is often people and regular docs never understaand it unless they get bit and get lyme themselves.
hang in. wait for more input. keep coming back. if others dont tell you about books and videos and docs i will try to help. im older and been sick a long time. so tired after holiday.
we have a few from MN
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i dont understand why it says you posted 16 times but i can only find one
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Stop trying to talk to them. It rarely ever works with lyme as it's so very complex. Ask them to read, watch, attend a support (but call it "information") group (and you find your group, too).
Ask your family to watch documentary: UNDER OUR SKIN and
read the book "Cure Unknown" by Pamela Weintraub
Also ask them to print this out and read it:
"Required" reading for anyone who really wants to understand. Hopefully, they will.
For those with lyme, this can be hard to read both physically and emotionally. Plan something refreshing for yourself after pouring through this. Take it in steps, it is a rough format so you may want to copy, paste and then change font and add some space breaks for your "study" copy.
posted
I think you gotta explain the illness - how it works, how the spirochete works, paint a physiological picture for them...
Posts: 13117 | From San Francisco | Registered: May 2006
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
What does your family SAY when you tell them you think you have lyme disease?
Do they say, "Well, why don't the doctors say you have lyme?" or "Well, why did your lyme test come back positive then?"
You have to understand why they are skeptical. You have to answer their objections. You have to explain about the lyme controversy, about the tests being no good, and show them the Burrascano Guidelines.
You have to tell them that this same thing is happening to thousands of people all over the country.
Tell them that this fight about lyme has been going on at least 25 years. Burrascano testified before the U.S. Congress about it in the early 1990s. You can search the Congressional Record for his name and find his testimony.
He told Congress that the IDSA has taken its stand on lyme disease and won't change because they have conflicts of interest (in other words, follow the money) that lead them to want to continue their current stand on lyme disease being rare and easily treated.
They have patents on lyme tests, contracts with insurance companies, grants and other arrangements with universities, etc. and this all is based on the stand that the IDSA took regarding lyme years ago.
The video I told you to watch even mentions that pride likely keeps the IDSA sticking to their guns regarding lyme disease. It also says that the IDSA made up their lyme treatment guidelines after only one or two studies, and that is ridiculous.
You can show them that the Connecticut Attorney General (Blumenthal, I believe) filed a law suit against the IDSA a few years back for creating lyme treatment guidelines when the panel that created these guidelines had many conflicts of interest.
There is a lot of evidence for the lyme disease controversy and you can find it on the Internet to show them. It isn't just here on LymeNet that this stuff is being said.
Many, many people have had negative lyme tests. Many have been told by doctors that they don't have lyme. I have seen family turn around once the person went to a lyme specialist, got tested by Igenex, got a positive test, and started being treated by a lyme doctor for lyme disease.
Once you find a medical professional who thinks you have lyme, the family will take notice and some may start reconsidering.
And, when the treatment helps you, that usually does the trick.
Have them watch the short video I gave you from the Boston TV station. Watch "Under Out Skin" on Hulu next. (It is much longer. A full-length movie.)
Educating them is the best way to see them turn around.
Look on the Internet for sites that talk about lyme being the next great imitator, that it imitates almost every imaginable disease. That will explain to them why the doctors have thought you had other ailments and were treating you for so many different ailments since the tick bite.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Hi Hugh--the book Keebler suggested really helped my husband and I understand the politics of Lyme, the science of Lyme, and the impact on people and families. It's written by an award-winning science journalist, so the explanations are clear and the writing is beautiful:
Don't let the title put you (or your family) off! Like a lot of people, Pam Weintraub and her family found the right treatment and got better.
You could find a chapter that you think would be useful for your family and friends--like the one explaining why the usual tests are so misleading--and ask them to read just that.It's really eye opening.
We were also helped by the excellent documentary film that TF and Keebler recommended: http://underourskin.com/
I'm sorry, both that you have Lyme & co and that your loved ones are responding in this way. As others have said, I hope you find (or have found) a good LLMD and start treatment.
Posts: 431 | From New England | Registered: Dec 2011
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Some good books if you think they might be willing to read:
"Cure Unknown" by Pan Weintraub "Insights Into Lyme Disease" by Connie Strasheim "The Lyme Disease Solution" by Dr. S
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Because when you google " Lyme disease" the first site that comes up is "CDC.com" and it says it's a simple, fast easy thing to get over. CDC unfortunately has more credibility(to them) than you do.
Don't think about them, just concentrate on getting better. They'll never get it and the more you push it, the less likely they are to believe you.
Sorry you're in this mess.... Vindication is coming, not sure when though.
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
It's an eye opener to learn that your friends and family members are so stuck in their own belief system to the extent that they won't even consider the fact that a: you got bit by a tick, b: now you're sick, and c: it's real.
Unfortunately, the old guidelines (current ones) for identifying lyme are simply wrong. Therein lies the biggest problem. That is why most docs and people are clueless about it. Why our government hasn't corrected it yet is beyond me.
I agree with Droid, just concentrate on getting better. Trying to convince friends and family members about lyme disease is kind of like trying to convince them to vote for the other guy. People are stuck in their own belief system. It's a big waste of your time trying to convince them otherwise. Let it be.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
The prejudice against treating and diagnosing Lyme is ridiculous.
Don't waste your energy on people who don't want to learn.
Save your strength for treatment and for people who believe you.
My in-laws gave me the most disdainful look when I told them I had lyme. I got this horrible, sneering look from my mother-in-law saying, "Are you sure?"
I just said a firm "yes" and I don't see them much anymore. Not worth the time and effort.
Posts: 2839 | From California | Registered: Jul 2012
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
Well people called me a hypochondriact till i got the actual microscopic pictures of my lyme,printed them out and showed them.
Along with the pictures of babeseosis in my red blood cells.
I was 29 when I got bit and got lyme.It took 6 years to get a diag..I am 58 now 29 years fighting this thing.
MADDOG
Posts: 3997 | From Ohio | Registered: Oct 2000
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
Was that rash a spotted rash or a solid red rash??
MADDOG
Posts: 3997 | From Ohio | Registered: Oct 2000
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Print out the Lyme map for MN- you and Wisconsin are endemic.
At least where I am I can give a half pass since we rarely (and I've never) seen a tick, and we have no mosquitoes.
But Minnesota? Tell them to wake up and smell the coffee ;-)
Really, like others have said, just concentrate on yourself... Hang in there.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
This Lyme community has been so great in helping me. The rash looked like I was hit by 20 baseballs, red out lines with whitish centers. When the rash left the red out lines where still there for a day. Some littler like mosquitoes bites. Like 30 of those. I got a call from the Lyme collision of MN. She really help me feel better. Saying I'm not alone. She said Lyme is exploding in MN.
-------------------- Live to love another day Posts: 32 | From Minnesota | Registered: Dec 2013
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posted
Im 200lbs mma fighter/trainer. I been crying like 5 times a day. Im so emotional.
-------------------- Live to love another day Posts: 32 | From Minnesota | Registered: Dec 2013
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
omg-20 bullseyes it doesnt matter what your tests say-you have it
hang with us...we'll help you thru
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Also, Hugh, the state of Virginia passed a law that when a person is given their lyme test results, it must say right on the test results that a person can still have lyme disease even if their lyme test is negative.
So, that is one state where lyme is an epidemic now requiring that all patients be told that the lyme test isn't accurate.
This was a wonderful law passed in 2013. Before this, in Virginia, people would think that since their lyme test was negative they could not possibly have lyme disease. Now, they are told that they could still have it.
Of course, this statement is true in every state in the U.S., not just in Virginia.
This law should be passed in more and more states so that it becomes common knowledge that a negative test doesn't rule out lyme disease.
Then, maybe more doctors will wise up.
Tell your family about this law.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
It looks like we have that law in MA too, TF. But of course ISDA doctors who tell you your test results don't read you that part! It pays to get copies of your tests and medical records.
Posts: 431 | From New England | Registered: Dec 2011
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