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who is the best Lyme organization to donate money to?

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Posted 8/31/2009 1:33 PM (GMT 0)
the love of my life died of Lyme disease a while back. Instead of flowers for her memorial service, we want to have people donate to a good Lyme disease charity. Some organization doing research or education. I know that there are some organizations that supposed to be helping Lyme disease patients, but are actually doing more harm than good, by saying that there is no such thing as chronic lyme disease (like the CDC). But I can't remember who the bad guys and good guys are. Could someone please advise me as to who to steer clear of and who to recommend?

Trish was diagnosed with Lyme 8 months after her first symptoms. She had thought she had ALS. She was getting intravenous antibiotics daily. She was rich. But she either succumbed to the disease, or more likely, to a very very weakened immune system and muscles so weak she could barely hold a plastic spoon. She simply stopped breathing in the middle of the night. This happened because her neurologist never considered that it could be an infectious disease. Hence the delayed treatment. That is why I still believe in going to the General Practitioner first! He/ she sees the big picture.
Posted 8/31/2009 4:04 PM (GMT 0)
ChrsM

I'm new to lyme disease so I'm not sure who is best to donate to; however, I'm sure someone on the boards will be able to help.

Was anyone able to tell you why the antibiotics did not work?  I think it is so sad that the love of your life died from lyme. Stories like this are a reminder of how bad this lyme disease can be. As for me it was a neurologist that diagnosed me not my general practioner.

Regards,

Angela
Posted 8/31/2009 4:07 PM (GMT 0)
this one, among other things, publishes The Lyme Times magazine

http://www.lymediseaseassociation.org

My family dr would have never diagnosed me correctly, he can't even believe that my dh and I both have lyme. He told me he knew very little about lyme last year. DH saw him not long ago and asked him if he had studied any more about it since 2 of his patients were diagnosed with lyme. He said "No, I know about lyme."

I'm sorry, Chris. I forgot to say how sad I am for you that you lost someone dear to you to this disease. It is wonderful you want to help others as a memorial.

Post Edited (Scooterscooter) : 8/31/2009 10:10:56 AM (GMT-6)

Posted 8/31/2009 4:17 PM (GMT 0)
Hi Chris,

Welcome to the forum:) I am so sorry you are having to find us this way and so sadened by your loss. I think what you're doing is great. Feel free to come here anytime if you need to talk or just get some things off of your chest.
Posted 8/31/2009 10:00 PM (GMT 0)
Hi Chris,

We are so sorry for your loss. It is a wonderful idea, and tribute to your friend, to inform people about lyme while helping donate to the research. Maybe you can interview some of the following organizations and get a feel for which projects they may know of that suit your purpose.

http://www.ilads.org/ (Intern'l Lyme and Assoc. Diseases Society)

http://www.turnthecorner.org/bod.htm (Turn the Corner Foundation)

http://www.lymedisease.org/ (California Lyme Disease Assoc.)

There may be a lyme assoc. in your state, also, or a local group that does lyme awareness education in your area. Good luck with this noble effort. Your friend would be pleased and honored by it.

Best wishes to you, bablymers mom
Posted 9/1/2009 2:43 AM (GMT 0)

Chris, I am very sorry for your loss.  I too, lost a friend, someone I cared for and about.   I saw how unpretentious, courageous and strong she was which made it even more devastating to deal with loosing her, though I am truly blessed and enriched for knowing her.  I only wish there was more time.  Time for this very special and dear person to have the chance to recover enough to realize her dream of living in the tropical home that she loved.  Time to have the puppy she longed for. More time to read, which she loved to do.  More opportunity to travel.  She was a unique, intelligent and caring woman, rich in so many ways.  Unfortunately, money can not buy health, but maybe it can accelerate finding a cure.  This is a debilitating and incidious disease which is still not being taken seriously by the medical community or the insurance companies.  I think that donating in honor of someone so dear is a noble and self-less gesture.  A friend was truly lost to me and Thanksgiving will never be the same for me and in honor of my friend and those friends that are still battling this illness, I too, would like to make a donation to help further research to find a cure for Lyme Disease and participate in this memorial to Trish if I could.   sad

Posted 9/1/2009 2:51 AM (GMT 0)
New Member, did you know Trish? because you are describing her exactly. right down to her home in the Caribbean, her love of reading, and her desire to have a puppy. and the fact that she died on Thanksgiving. you must be talking about Trish. How did you know her?
Posted 9/1/2009 3:07 AM (GMT 0)
Hi Chris,  Yes, I knew Trish and miss her everyday, wondering and waiting for a memorial or tribute to this wonderful friend.  I know on this resource names are not allowed but I am sure you would remember one person who was involved in her treatment on a weekly basis.  I used to sit with her and we would talk about the things women talk about because she felt so isolated not being able to get out very much.  You and I spoke at length shortly after I recieved the terrible news about her passing.  Since then, I have inquired to a family member about a service or memorial and was told soon there would be one but I have yet to hear until now.  I hope I am not too late to participate in paying tribute to this most beloved friend.      

Posted 9/1/2009 3:12 AM (GMT 0)
yes, well, the service will be in October. We have been waiting for the Zoo to accomodate us, so we could have it there. But they have been dragging their feet. She left everything to the zoo, and just thought there was no hurry. it wasn't my call anyway. Please PM me and I will make sure you have all the info. It is amazing that you saw this and this is your first post. Do you usually just lurk on here? I haven't posted on here since she passed away.
Posted 9/1/2009 3:25 AM (GMT 0)
I recieved an email from another "friend" who knew Trish to inform me of your posting today.  This other friend visits this site also and was very saddened by Trish's passing. I will be there for her memorial if you keep me informed.  I am not sure what "PM" means but I will check back here to get more info.  I am not sure if you still have my number but if you do please fell free to call.  My phone screen broke and I have been unable to retreive several of the numbers from the old phone...I would have called you or her aunt if I could have. 
Posted 9/1/2009 3:31 AM (GMT 0)
most of these forum websites give you the ability to Private Message other users. This one does not. Just go to my website at mannphoto.com and you can find my info. I have lost yours. Don't know what I did with it.
Posted 9/1/2009 4:04 AM (GMT 0)

I was in the city today and thinking of Trish.  I will get in touch in the next few days...we will talk more then!

Posted 9/1/2009 5:05 AM (GMT 0)
i am so sorry you both lost a dear one to you. and i believe its a great way to show your respect to her love. i wish you both peace and pray one day soon they find a cure for LD. :)

P.S. i hope its ok with you. i have a litter of pups they are 5 weeks old now, and believe it  or not i named 1 of the lil girls Trisha, for Trisha Yearwood. but i would not like to have your blessings to have it as Trish for your friend, in mimory of her, and the pup she didnt get to have. this alone brings tears to my eyes.

¤°´¯BIG.¤*¨*¤(¯`´¯)¤*¨*¤.Hugs¯`°¤.

Posted 9/1/2009 10:47 AM (GMT 0)
Chris and Rusty,

If you look at the top of this page, there is a "control panel". You can add your email there and it will show up to the left of your name as a highlighted envelope. You can then keep in touch through email.
Posted 9/1/2009 12:36 PM (GMT 0)

ChrisM, I am very sorry for your loss.  How kind of you to want to raise donations in her name.  I recommend the Lyme Disease Association.  The founder, Pat Smith, works tirelessly to educate and bring about awareness.  You may also want to donate to the Lyme pediatrician fund which provides money for testing for families who cannot afford it.  For contact information, you can email me at [email protected]

Are you aware of the Lyme Disease Memorial Project http://www.lymememorial.org/ ?  It is a memorial for those who have passed away from tick-borne diseases.  You may want to have Trish's name added if it has not been.

My heart goes out to you.

 

Posted 9/1/2009 12:57 PM (GMT 0)
I think I understand your question Rottendog. The answer is yes, you have my blessing.

Cajungirl, most people don't want to publicize their email addresses on an open forum. That is why most of these us a Private Message system. This is the first forum I have seen that does not have that.

thanks to everyone, for your suggestions, and for your sympathy.
Posted 9/1/2009 2:22 PM (GMT 0)
Chris,

I'm sorry I couldn't help you more. I hope everyone has given enough suggestions here so that you can make a decision.

Again, I am sorry for your loss.
Posted 9/1/2009 2:30 PM (GMT 0)
here is what still trouble me about this. I still don't know for sure exactly what killed her. Doesn't seem like it was the disease as much as what the disease and antibiotics and inability to eat much did to her strength. She seems to have died from atrophy. wasted away. she had no muscles. Her heart and lungs (diaphram?) just became to weak to keep going.

She had finally seen a second doctor, and he wrote me after her death that from looking at the Igenex test she took one week before her death:

"Her lyme western blot IgG and IgM were positive by IGenex guidelines and
negative by CDC guidelines. So, the interpretation of whether or not there
was an active infection is debatable, but certainly I would say that she had
lyme disease at some point."

so she actually died of complications from Lyme disease and its treatment. Something I think people on this forum would do well to realize, if they don't already.
Posted 9/1/2009 4:16 PM (GMT 0)
Chris,
I am so very sorry for your loss. There is a wonderful online forum for those who have lost a spouse. www.ywbb.org
((((((((((((((((((((hugs))))))))))))))))))))))))
Posted 9/1/2009 10:30 PM (GMT 0)
chris

i am so sorry. this is a terrible disease that gets little recognition. it is wonderful you want to do something in trish's name to honor and remember her.

i had exchanged several emails with trisha and was very upset when i heard about her death. her and i had similar symptoms. i posted here as kimc but i forgot my password and i just re-registered. i can't figure out how to add email to my profile but my email is [email protected] if you could let me know privately about the memorial service.

i raise money for the lyme disease assoc and i think they work hard for patients.

best wishes to you
Posted 9/3/2009 12:44 AM (GMT 0)
Bump
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