posted
A couple of weeks ago I read two separate posts from young people suffering from Lyme who were really struggling with convincing their families that their disease was real.
I offered to write a personal letter to their families highlighting what we have gone through as a family for the past 5+ years (my daughter suffers from Lyme and 3 co-infections).
One of the posters to whom I sent the letter has asked that I post it here in the General forum. My only reason for doing so is in the hope that someone else might benefit from our experience and be able to share our story with their family.
I've included the letter below (I deleted all the personal references from the original letter).
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I'm not really sure where to start so I'll just write what I know.
My name is XXXXXX. I am a retired SMSgt (4 years in the Seabees, 21 years USAF), living in southern California. I'm 59 years old, a veteran of two tours in Vietnam and a Christian man with a family that is hurting.
I'm not trying to sell anything and I'm certainly not trying to get involved in anyone's family business.
I just know that my family has been through a nightmare for the past 5+ years and I thought that if I could help anyone else by simply writing a letter, I would certainly try to do so.
I hope that you will take the time to read the following and see if maybe your family is experiencing some of the same things we have.
My daughter, Nicole (28 years old), has Chronic Lyme disease. She suffers every day from pain in most of her joints and muscles.
She also gets migraines so severe that she's unable to get out of bed for days at a time. She's had flu-like symptoms so bad she's been unable to keep much on her stomach for weeks at a time.
She's experienced time where she's been unable to speak clearly and she has problems with her short term memory.
This has been going on since January 2001.
Nicole was and is a very bright, engaging young woman who is now stuck living with her parents.
She has been so ill that she was forced to move back home and that is probably the worse thing about this illness, she's just not capable of taking care of herself.
Her first family doctor diagnosed her with Fibromyalgia Syndrome, Chronic Fatigue/Chronic Pain Syndromes.
The typical treatment for these ``diseases'' was to prescribe pain medications, antidepressants and anti-anxiety medications. Of course this only treated the symptoms, not the cause.
Nicole then began the rounds of being tested by all of the specialists. For a period of more than 4 years she saw so many different doctors we've lost count.
She's been to a rheumatologist, a cardiologist, two neurologists, a psychiatrist, a psychologist and two different family doctors; you name it she's seen one.
She's had at least six MRIs of her brain, two spinal taps, so many x-rays we've lost count.
She's been to the Emergency Room of our local hospital so many times that they know her by her first name.
She's been admitted to the hospital on three separate occasions for more than a week each time.
She's had so much blood drawn that she no longer even cringes when they stick her with a needle.
It wasn't until we were referred to a doctor in northern California that we finally found out what she has.
She and I made the 9 hour drive up the coast to see this doctor. He spent more than 3 hours just talking with us. He then drew blood and had it sent to a laboratory that specializes in testing for Lyme disease.
The results were just what he predicted, she tested positive for Lyme disease and three other co-infections.
All of the bacteria in her body came from a tick bite. In fact we even remember when she was bitten.
In 1996, Nicole and several of her friends went camping in the mountains above Ojai California.
When she returned four days later, she discovered a fully engorged tick in her scalp. We didn't think much about it.
We now know what it has done to her.
Nicole has been taking several courses of oral antibiotics from late 2005 until June of 2006.
In June she had an intravenous tube placed in her arm, called a PICC line. She now infuses antibiotics through the PICC line directly into her blood system.
This IV infusion has made a world of difference.
She no longer needs her wheelchair, she is able to get out of her room for about 6 hours every day and her ability to communicate with us and her doctors has improved tremendously.
We're starting to get our child back.
I wanted to tell you that when she first became ill I thought it was just her imagination. I thought she was just being lazy.
She would call me from work and say she was just too sick to drive home. I'd go to her job and drive her to her apartment.
I wasn't very patient with her. I just didn't understand.
The cause of the pain and other neurological symptoms she goes through doesn't show up on an x-ray or in routine blood tests.
She doesn't look sick from the outside. It was an extremely rough time between her and I the first four years of her illness.
I am probably the world's biggest cynic (must be the military training).
If I couldn't see the problem, I didn't believe it existed.
How could my daughter be so sick and not have it show up on any routine blood test or x-ray.
I assumed she was either faking it or like I said, just lazy.
The real problem with this disease is that there just isn't much known about how it works in the body. In fact many doctors don't even believe it is real.
Most health insurance companies won't even cover the procedures needed to treat this nightmare.
We've had to pay for about two-thirds of her treatments out of our savings.
Let me tell you, it's been a tough ride. I've gone to almost all of her doctor's appointments over the past five years.
I've listened to them tell her nothing is wrong. I've seen the disappointment on her face, especially when she and I have had arguments about her illness.
I've not been the easiest person to get along with, in fact, at times I've been a real jerk.
Her mother and I have watched and listened when she has been so sick she can't get up off the bathroom floor for hours.
We've watched as the paramedics have come into our home to take her to the hospital.
We've watched as she has become so ill she has to have a wheelchair to even get to her doctor's appointments.
I've done all the research I can over the internet and from books.
Lyme disease is real.
I'm not sure where you and your family are with this problem. I just know it's been one of the toughest things I've ever had to face.
Well that's about it. That's our story. I hope I've been able to convey to you and your family how real this thing is.
It wasn't until I saw a difference the antibiotics have made for my daughter that I finally became convinced that she has been suffering beyond anything I could have imagined.
Maybe I just didn't want to admit I couldn't fix it, so it couldn't be real.
I have a lot of things to work out with Nicole when she is well enough. I've hurt her and I have a lot to make up for, but that's going to come.
I'm convinced we will lick this thing.
I only hope that others can read this and understand that someone else has gone through the same things as you are.
You are not alone.
If you'd like more information, one of the best sources I've found is at the LymeNet website.
I've spent many hours reading of other peoples struggles and advances on this site:
posted
^^
Posts: 681 | From California | Registered: Oct 2005
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Thank you for sharing your incredibly moving story. It is a very important one for many families to hear. Your honesty and commitment are wonderful. My best wishes for Nicole's health and well-being, and for your whole family.
Posts: 2557 | From home | Registered: Aug 2006
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Lymedad,
I have to say that you are a very kind man to put yourself out there like this for others.
I was blessed in that my family believed me but not sure all the doctors did.
So many getting this diagnosis have families with no clue what is going on. Afterall, isn't lyme that thing where a tick bites you and you get antibiotics and you are all better?
Awareness is needed desperately and it looks like I got the diagnosis just in time to see this whole evolution erupting in full force between ISDA and ILADS.
I just know there are many that can use your letter to help families understand that this isn't made up and it isn't going to go away in a week or two.
You have a huge heart and I know your daughter will be forgiving because in the end, you are here helping her every step of the way. We need more "dad's" like you in this world.
The best to your daughter and all in your family.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
Thanks dad for sharing this message. My husband feels guilty because he brought this disease home from Vietnam, when he served in the military. His daughter has been diagnosed with Lyme, and she has never been bitten by a tick. She lives in So. California, we live in Texas. Although she is currently functional, she exhibits many of the Lyme symptoms. I am saving your letter for dad and her. Many thanks again.
Posts: 157 | From Dallas, TX | Registered: Apr 2001
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It can all work out and she will be glad you stuck by her even if you didn't always believe her.
I've been on her end and I'm not trying to make a joke out of this but since I'm better now I always bust them for my wife and mother (jokingly). They really, truly thought I belonged in a psych ward and tried to get me there.
I guess what I'm saying is, it will all work out.
All My Best, Scott
-------------------- BTW - I am NOT a medical professional - just speaking from MY own personal experience. Posts: 266 | From Philadelphia | Registered: May 2005
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posted
incredibly moving account, and so wonderful of you to share this so candidly!
it is very poignant and depicts all angles of the struggles families and patients face in a way everyone (familiar with Lyme or not) can understand.
you will no doubt mend all as you have taken her in your arms and the dedication it takes to get our kids through this nightmare is tremendous. your daughter is lucky to have you, your committment, and your honesty.
so are we!
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Really moving account, Lymedad -- all the more so because of your initial skepticism. I hope your daughter continues to regain health!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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I really do appreciate this bunch here at LymeNet. I've learned more than I thought I ever could about Lyme, its treatment and about people in general.
After so many years being surrounded by people who walked and talked just like me, its been a real eye opener to correspond with people with such diverse ideas, yet all with the same goal.
We're all lucky to have each other. ---------------------------------------------- Mo you old softy. I knew you liberals were actually all a bunch of creampuffs.
Thanks ole buddy. I appreciate yours and everyone elses sentiments.
Posts: 681 | From California | Registered: Oct 2005
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you and your family remain in my thoughts as extaordinary people.
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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bettyg
Unregistered
posted
Dad, you have been blessed with a special gift of expressing your thoughts/feelings into words deep within your heart!
Thank you so much for sharing your power story from a Dad's viewpoint of being a skeptic.
Those under you in the military were BLESSED to have you even if you are not to show emotions there! Your heart reaches the moon; it's unlimited.
I would love to see you do 2 more things with your letter; 1 is easy. Please copy your link here and paste it to a NEW POST in TREEPATROL'S NEWBIE LINKS so it can be read by thousands more to come online.
It would be great in the BUT YOU LOOK SO GOOD area of explaining things to family members.
2nd suggestion is emailing your letter to DEAR ABBEY where NATIONWIDE lyme families can benefit from your wisdom, courage, and learning to give support to your daughter who you initially thought was faking it and lazy!
You'd overwhelm the nation with endless tears, and be sure to give the LDA website, and BOTH web petition sites.
Thanks for your consideration Dad; we are truly blessed to have you, and your daughter HAS forgiven you. You're going to every LLMD appt; and providing her 24/7 support and unconditional love. YOU ROCK DAD!
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Way to go daddio!
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Just read your story and I was very moved. You have a way with words.
I pray for your daughter Nicole.
I suffer from this awful disease and I am lucky to have family support as so many others don't.
I will say one thing to you.........
If my children ever had to go thru what I have been thru I don't know what I would do.
As parents we want what is best for our children and instantly want to fix things.
I feel for you and your family and I am so thankful you did come around. Nicole has all of your support now and I bet that means the world to her. You are a wonderful dad!
I mean this from the bottom of my heart.
I wish I could take away everyone's pain who lives with this.
Take care and your family will be in my prayers.
karen
Posts: 151 | From Massachusetts | Registered: Nov 2006
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posted
Thank you for sharing this with us. It's very moving and I congratulate you for your honesty about your feelings.
I hope Nicole gets better soon and you are able to make up to her for your initial doubts.
I am going to send your letter to our family doctor, paediatrician and microbiologist in the hope that it opens their minds. I am also sending it to a friend of mine. Her 15 year old daughter has chronic lyme IMO but her step father thinks she's lazy and making up her symptoms. I've offered to pay for her Ignenex blood test but he is too proud to accept. Maybe reading your story will soften his heart.
Thank you lymedad.
Posts: 67 | From UK | Registered: Oct 2006
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
you are amazing. your daughter is so blessed to have a dad like you.
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