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

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Author Topic: Open Letter to Families of Lyme
lymedad
LymeNet Contributor
Member # 8074

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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 time 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 sill 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 or 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 will yourself well.

I was so far off-base. 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 this 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, etc., etc., etc.

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 wil 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

Posts: 681 | From California | Registered: Oct 2005  |  IP: Logged | Report this post to a Moderator
just don
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"AWESOME"!!!!!

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just don

Posts: 4548 | From Middle of midwest | Registered: May 2001  |  IP: Logged | Report this post to a Moderator
henson2
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Thank you for posting this, Lyme Dad.

I hope your daughter is doing better. I know for certainty it will help her to have you in her corner.

Posts: 1066 | From East Coast | Registered: Dec 2000  |  IP: Logged | Report this post to a Moderator
Robin123
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Thank you for posting this. Now we can refer families to it. You're right. People just need to understand that we are sick, and then start asking what's going to help, and then get going with that. Thank you, Lymedad, and I hope your daughter can improve in her health.
Posts: 13013 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Mom of 3
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WOW!!! That was a true amazing letter! It made

me cry and feel the pain that was in your word's

of wisdom! I want to THANK YOU for your kind

word's and your wisdom that you have passed onto

other's. It's people like you who make a

difference for people like us!!

God Bless and Take Care!!

[Wink]

--------------------
Best Friends Are The Siblings God Forgot To Give Us!!

Posts: 24 | From Wabasha, Minnesota | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
LisaS
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up for anyone who didn't see it yet

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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
KauaiGoddess
LymeNet Contributor
Member # 11782

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Thank you Lymedad!!!

That really touched me deeply, I can't even thank you enough. Your daughter is the lukiest girl in the WORLD!!!!

When I first moved home 1 1/2 years ago (I was 20), my dad responded in somewhat of a similar way.

He just ignored the fact that I was sick, in many ways...

I was BEGGING for his understanding....

No test could show anything was wrong, or Dr. come any real answer .....

People always tell me, "oh you look FINE!!" This always would BLOW me away,I'd be MIND BOGGELED,

cause I felt like a piece of POOH at the bottem of the toilet!!

It caused me a lot of pain. Also, almost all of my 'friends' didn't get it, they'd just give me random sympathy phone calls-

'oh I'm so sorry, this really sucks that your going through this, you POOR thing!!!!'

Ahhhh!! This killed me! I hated listening to it! I finally stopped answering calls and have

completly cut contact off with those that aren't supporting me......they just don't get it and I just don't have room for that energy....

I had a lot of built up anger that they didn't understand, but fianlly realized it was a blessing,

it's showing me who's REALLY real in my world.....and willing to understand.....

I did some serious pruning, to allow for new growth that needs to take place......


It really hurts when loved ones don't get it....it's the willingness to do research, so an

understanding can take place, as you said very nicly.....

Your quote:

"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."

It has taught me these lessons as well. It has been a blessing is disguise, that will change my

life forever!!.... a profound depth from having endured this Dis-ease.

your daughter is very VERY blessed!!!

many many mahalos~~~

the crying, touched fawne

--------------------
Energy flows where attention goes~

Posts: 302 | From Kauai | Registered: May 2007  |  IP: Logged | Report this post to a Moderator
lymedad
LymeNet Contributor
Member # 8074

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KauaiGoddess,

You are most welcome!

However, I must disagree with you, I feel like I'm the one who has been blessed.

I have a really lovely family. My wife and daughter are with me and my son and his wife are not far away.

I really hope that you find your way to health.

I think I wrote you about a LLMD here in Calif. If not, let me know, we have an excellent one.

To everyone here at LymeNet;

Thank you for the kind words concerning this post. I wish I could do more to help each of you.

Sincerely,

LymeDad

Posts: 681 | From California | Registered: Oct 2005  |  IP: Logged | Report this post to a Moderator
bettyg
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Dad, YOU HAVE DONE IT by writing this letter from the bottom of your heart and soul.

you reflected where you USED to be, and your turnaround to where you are now PROTECTING your daughter from your own family, etc. who do NOT GET IT!

as you/i have talked many times; YOU have been BLESSED with this gift of writing!

I THINK LYMEDAD'S LETTER NEEDS TO GO WITH BOTH PETITIONS WHEN THEY ARE GIVEN: lynn's to congress and to LDA's to CDC/CONGRESS/whoever else they intend to !

god bless you lymedad and wife for sharing your daughter's life, treatment, and your writing talents!

also, if our lyme bill ever goes to SPECIAL COMMITTEES IN CONGRESS, i vote YOU to be one of the folks representing us in congress expressing yourself the way you have done here!

[bow] [group hug] [kiss] [group hug]

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just don
Frequent Contributor (1K+ posts)
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bump for todays posters

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

Posts: 4548 | From Middle of midwest | Registered: May 2001  |  IP: Logged | Report this post to a Moderator
BackinStOlaf
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Amazing- thank you

--------------------
First Symptom 9/09
Multiple docs, negative Labcorp test
LLMD: 1/10
Positive Igenex/CDC test
Treatment 2/10
2/10-8/10 Amox, ceftin, zith, flagyl
Currently: Bicillin, Minocycline, still dealing with severe breathing issues

 -

Posts: 1121 | From New York, New York | Registered: Dec 2009  |  IP: Logged | Report this post to a Moderator
bejoy
Frequent Contributor (1K+ posts)
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Thank you again, LymeDad.

--------------------
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
Lymetoo
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Everyone needs to save this link for future reference and to help others.

Thanks, lymedad!

Hi, bejoy! [hi]

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

Posts: 94884 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
steve1906
Frequent Contributor (1K+ posts)
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Hey lymedad, well it's been about four years since you wrote this note.

How is your daughter doing? I hope everyone is well!

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Everything I say is just my opinion!

Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
BoxerMom
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Up for Nicole

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 - Must...find...BRAIN!!!

Posts: 2867 | From Pacific NW | Registered: Apr 2010  |  IP: Logged | Report this post to a Moderator
Jacqi
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Do you think it would be ok for me to print this out to show my husband? He gets it that I have Lyme, not so much when it comes to my 22 yr old son. He is starting to, but I think this might help things along...

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J

Posts: 91 | From Northwest Indiana | Registered: Dec 2004  |  IP: Logged | Report this post to a Moderator
cheffer
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he did do an update see lymedad-sick in old posts
Posts: 131 | From ontario | Registered: Oct 2010  |  IP: Logged | Report this post to a Moderator
Jacqi
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Thanks!

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J

Posts: 91 | From Northwest Indiana | Registered: Dec 2004  |  IP: Logged | Report this post to a Moderator
Bugg
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Wow. Beautiful.

I wish this could be published in newspapers across the country...would help not just lyme but others suffering from "invisible diseases".....CFS..etc...

Posts: 1155 | From Southeast | Registered: Oct 2005  |  IP: Logged | Report this post to a Moderator
Bugg
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Anyone know a newspaper editor that could get this published in Wall Street Journal...New York Times...etc????
Posts: 1155 | From Southeast | Registered: Oct 2005  |  IP: Logged | Report this post to a Moderator
lululymemom
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I believe this is the latest update on lymedad's daughter..

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/85459?

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IGM 41 IND, 83-93+ IGG 31 IND,34 IND, 41++, 58+, 83-93 IND

31 Epitope test neg.

Bartonella henselae 1:100

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brandilb
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Thank you LymeDad!!

--------------------
Without music, life would be a mistake.
-- Nietzsche

Posts: 48 | From Maine | Registered: Apr 2010  |  IP: Logged | Report this post to a Moderator
Lymetoo
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YES!! Print it out ... He posted it to help others!!!

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

Posts: 94884 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Jacqi
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Thanks so much!

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J

Posts: 91 | From Northwest Indiana | Registered: Dec 2004  |  IP: Logged | Report this post to a Moderator
   

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