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» LymeNet Flash » Questions and Discussion » Medical Questions » Open Letter to Families of Lyme

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Author Topic: Open Letter to Families of Lyme
lymedad
LymeNet Contributor
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Dear Family of a Lyme Disease patient,

I am writing this letter to all parents and family members who are witnessing their children, wife, son, father, aunt, uncle, cousin, etc. struggle with Lyme Disease.

I am one of you.

For more than 6 years my daughter has suffered through this ugly, dark disease.

She has experienced horrible migraines, severe joint & muscle pain, nausea, vomiting, extreme fatigue and loss of her ability to speak or think logically (these are just a few of her symptoms).

She has become unable to work. She has been forced to move back into our home at the age of 23 (she is now 29). She has virtually lost her 20's, one of the most productive and exciting times of her life.

We have taken her to every known medical specialist in southern California as well as three different General Practioners.

She has been diagnosed, at differing times, as having Chronic Fatigue Syndrome, Chronic Pain Syndrome, Fibromyalgia, Lupus, Psychosis, and MS (please notice that all of these are either syndromes or descriptions of symptoms; none of them are diseases).

For the first 4 years of her struggle, I was not a good parent, even though I thought I was.

My daughter didn't have any outward sign of her illness. She looked "normal". After many, many blood tests, MRIs, CAT Scans, x-rays, psychological tests; everything came back "normal".

I was, and still am, one of the world's biggest cynics and skeptics (I'm originally from Missouri - so "Show-Me").

Surely if you are as sick as you say you are, there must be something that will show up in your blood tests or on x-rays.

You can't possibly be this ill and not have something tangible to show for your symptoms.

You're either just faking it or your lazy or it's psychosomatic or your trying avoid the real world.

Get off your lazy butt and get some exercise or get a real job and face up to life like the rest of us.

That's the way I approached her illness. It's time you took control of your illness and just will yourself well.

I was so wrong. It took an outstanding Lyme Literate Medical Doctor to show me the error in my approach with my daughter and to show me the reality of her disease.

My daughter and I have both suffered because of my ignorance (I'm not saying all of you are ignorant, I'm saying I was ignorant. To be ignorant simply means to be uninformed not stupid). I am still working to rebuild the closeness we had before Lyme.

Lyme Disease is real, the pain is real, the problem with logical thought is real, the lack of energy is real, it is a real disease.

If your child or family member has been diagnosed with Lyme Disease, they are just as sick, if not more, than someone who has a more "traditional" illness, like Lupus or Multiple Sclerosis or Cancer.

I've done all the study, I've been with my daughter at all of the appointments, I've watched the misery she's been through.

Hey they just can't help the way this disease treats them. It's not their fault.

We as family members need to be there to support them. They don't need our pity. They don't need our skepticism. They don't need our criticism.

They need our understanding.

If you as family members will take the time to study this disease, you'll see that it is real. The little buggers who have invaided their bodies are real and they are making our loved ones sick.

Please spend the time you currently spend trying to figure out why your loved one acts the way they do really studying the disease. There are volumes being written on the internet as well as new books being published everyday on this disease.

We can't possibly understand the way they feel, not unless we have the same bacteria in our bodies.

My daughter has a long way to go before she's back to where she was 6 years ago. She has a lot of work and pain to endure before she can get there.

She certainly doesn't need someone who claims to love her causing her any more pain than she has already.

Families, from one who has been in your shoes, please let them know you love them.

Let them know you're there to help them.

Let them know that there's no way you can possibly understand their pain, but that you will try to understand their illness.

I think one of the most important things I've come to learn is that my daughter's disease may be God's way to teach me a lesson.

I'm not saying God gave my daughter Lyme Disease, but He may be using this disease to teach me how to love, how to be patient and how to be more understanding.

I wish you all good health and I hope that none of you will ever have to experience what our Lyme Disease loved ones are experiencing.

Sincerely,

LymeDad

[ 21. April 2007, 09:46 PM: Message edited by: lymedad ]

Posts: 681 | From California | Registered: Oct 2005  |  IP: Logged | Report this post to a Moderator
Vermont_Lymie
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Bless you! This is so very helpful.

I am going to print it out and give it to a
couple of family members who do not believe that
I have a problem, even as I enter my 10th month
of treatment for late-stage lyme and
babesia.

Posts: 2557 | From home | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
LisaS
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Thk you , we all love you LymeDad!!

--------------------
https://www.facebook.com/profile.php?id=1660435643

Posts: 1078 | From Lake Geneva WI | Registered: Nov 2006  |  IP: Logged | Report this post to a Moderator
serendipity
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Lymedad,
You did it again.
I'm crying.

Posts: 628 | From the south | Registered: Dec 2005  |  IP: Logged | Report this post to a Moderator
lou
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Henson, hope you have seen this post. Surely it will improve your situation.

Thank you lymedad, you are helping a lot of people with this.

Posts: 8430 | From Not available | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
Lymetoo
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AWESOME!!!!!!!!! Thank you so much!! I'm keeping this in my files!!!

 -
Thanks, brother!

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95208 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Tincup
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What a lucky girl to have a dad so willing to reach out, admit there were mistakes made, appologise, and try to fix it through love and understanding.

What a lucky girl indeed.

Thanks Lymedad for giving me hope that our loved ones do care and will make an effort to help with the struggles.

Hat's off to you! Bless your heart.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20352 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Tincup
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PS..

If you have time... can you email me please?

TANKS BERRY MUSH!

[Big Grin]

[email protected]

And no.. you won't have to adopt me... but the thought has crossed my mind!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20352 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
trueblue
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Serendipity is right, you've done it again, Lymedad.

Thank you, thank you so very much. I don't really have anyone to give that to, to read, but knowing someone does get it helps. I'm not sure that made sense, having trouble seeing through the tears. [kiss]


Tincup ~ I asked first, so wait in line! [Razz]

--------------------
more light, more love
more truth and more innovation

Posts: 3783 | From somewhere other than here | Registered: May 2005  |  IP: Logged | Report this post to a Moderator
just don
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I make a motion to have this letter "permanently" at the top of the page. Dont need the responses or the whole thread,,,just the letter. It is THAT important for THAT many people!!!

Invaluable for lymies families!!!

--------------------
just don

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Geneal
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Thanks so much for posting this letter.

I am going to e-mail it to my Dad.

Hugs,

Geneal

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savebabe
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Lymedad,

Thanks for posting that beautiful letter. I also got sick in my 20's and went though the same heartache as your daughter. My father did not understand for years, until finally a nursing student guided me to a lyme disease support group and I was able to find a llmd.

After I was diagnosed my parents had to learn about the disease and they finally understood exactly how bad these bugs can destroy your body. They were then able to believe me and take care of me. My retired father has spent much of his time treating me, flushing my lines, getting meds and supporting me, has devoted these years to my treatment.

I believe this horrible experience has brought my father and I much closer. I let go of all the anger of not being believed, and now I cherish the time we spent with each other.

God Bless you and your daughter. Your continued support will help your daughter overcome this disease.

Thank you again,
Savebabe

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Lymetoo
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quote:
Originally posted by just don:
I make a motion to have this letter "permanently" at the top of the page. Dont need the responses or the whole thread,,,just the letter. It is THAT important for THAT many people!!!

Invaluable for lymies families!!!

absolutely!

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95208 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
randibear
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there are no words to express my sadness........

if only family members would read something instead of calling it "bull_____".

You can lead a jackass to water, but you can't make it drink........

heartwretching........

--------------------
do not look back when the only course is forward

Posts: 12262 | From texas | Registered: Mar 2007  |  IP: Logged | Report this post to a Moderator
lymednva
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I agree this would be a good candidate for the top of the page, without replies, just the letter.

I wish I had known what was wrong with me 11 years ago when my 24 year marriage was disintegrating and I had just separated from the man who told me I was faking all my symptoms to to get back at him for all his traveling.

He wouldn't even believe it when I finally had a real dx. Now he's on TV spouting off his knowledge of mental illness in regard to the VA Tech tragedy, but he never took the time to learn about what caused his marriage to fail (and probably the mental illness of one of our sons). It wasn't all Lyme, but it played a huge part.

Getting friends and family members to accept that we are really ill is just one hurdle we need to go over in our battle with this hideous illness.

Having the support of family can make such a big difference in our being able to focus our energy on healing, rather than simply defending ourselves, and our inability to do what we used to be able to do, or what others can do.

Thanks for this letter!

--------------------
Lymednva

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Vermont_Lymie
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Yes, this letter and thread is a keeper, for the top of the page!

I would include all the replies too -- they show how very much
we need this type of understanding from our friends and families.
And how much we appreciate lymedad's eloquent loving kindness.

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heiwalove
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this is really wonderful, lymedad. i wish i had had something like this to show my family when i was really sick. thank you so much for writing it.

--------------------
http://www.myspace.com/violinexplosion

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Andie333
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Thank you, Lymedad...you will probably never know how many relationships this letter may help salvage!

I'm so glad you and your daughter have come to a place of healing.

I feel the disease actually brought me closer to my mother. But I have some friends who could benefit from reading this...and one high school guidance counselor.

Thank you again!

Andie

Posts: 2549 | From never never land | Registered: May 2005  |  IP: Logged | Report this post to a Moderator
AZURE WISH
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It was so nice of you to write this letter. I hope you know how many people this letter will end up helping (and healing in all kinds of ways) -

especially if it is posted at the top of the page (hint hint [Big Grin] )

--------------------
multiple chemical sensitvity group:
http://www.lymefriends.com/group/multiplechemicalsensitivities

Group for artists. All media welcome:
http://www.lymefriends.com/group/creativecorner


http://groups.yahoo.com/group/Lyme_Artist

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bettyg
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hi dad!

when i saw the title and you posted it, i knew i was going to read another heart-warming letter you wrote that will be very effective for family members.

yes, i was 100% right, that again you touched my heart and the tears came promptly.

i agree with just don, etc. when i read this, i'm copying this now to my newbie links/advise ... the letter as is so folks can print that portion off and put to use promptly.

dad, keep it up'; your background has helped bring you to the point you are today!

god bless you for sharing your heart and writing abilities with us all! [group hug] [kiss] [group hug]

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mag
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lymedad,

Underneath all the symptoms remains ....
a person that needs understanding, patience,and prayer from their family and friends

Thank God for dads like you

will be prayin for you and the family

mags

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Anneke
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Lymedad,

What a beautiful post you wrote for us. A former poster was right: you will never know how many relationships will grow deeper and more meaningful because of the ripple effect of your words. The love you have for your daughter is a priceless, beautiful thing.

With many thanks,

Anneke

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Robin123
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We have some parents coming with their kids to one of the support groups I go to. It means so much to the kids to have their parents with them in this struggle.
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bejoy
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up

--------------------
bejoy!

"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson

Posts: 1918 | From Alive and Well! | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
Karen Mc
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WOW, thanks for the up bejoy...Im crying

It really describes so much of what I would like to say to so many.

I see it was orginally from April 2007....does anyone know how lymedad and his daughter are doing??

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Pinelady
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Bless You. I pray for all the ones we haven't found yet.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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kadee
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quote:
does anyone know how lymedad and his daughter are doing??
Here is an update:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/22909#000004

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sutherngrl
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Beautifully written!!!

I keep telling myself....."suffering is not meaningless". And its not!

Thank you for writting this. You are a very good dad!

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just jan
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Lymedad,
I recently sent a letter begging my family for help. They are so far ignoring it. Your daughter is blessed to have you in her life.
Blessings,
Just Jan

--------------------
I used to be marblenose but my lymebrain could not remember what email account I used to sign in so now I am just jan...
bit in 1994 diagnosed in 2004 I have tried every anbx and alternative known to personkind.

NICENESS COUNTS!!

Posts: 61 | From orange county new york | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
   

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