away. I feel now like I should tell the world!
Posted by bettyg (Member # 6147) on :
abby,
i suggest you go to my newbie package link below and look for the articles on SUPPORT; 1 or more of them address this type of thing.
use table of contents to find things...good luck!
my personal reply is YES! be prepared for BUT YOU LOOK PERFECTLY HEALTHY AND IT'S ALL IN YOUR MIND MENTALITY! Posted by Geneal (Member # 10375) on :
I believe (for myself) that I am responsible for educating others about Lyme.
Maybe so they won't have to go through what I did.
However, it is a personal decision to share or not to share.
Most people (strangers) are very receptive to learning about Lyme.
People close to you (friends and family) often show less interest.
Hugs,
Geneal
Posted by abbyjo (Member # 16073) on :
Thanks for your input! Betty, I will check out
your link.
Many Blessings, abbyjo
Posted by adamm (Member # 11910) on :
I'm with Geneal--it's just like if we were refugees fleeing
from the genocide in Africa or the war in Iraq.
We are victims of one of the greatest atrocities in history,
and we need to be heard.
Posted by abbyjo (Member # 16073) on :
Thanks again. I totally agree -abbyjo
Posted by AP (Member # 8430) on :
I tell everyone... I am very open about the disease and all that has come with it. Sometimes, it is really hard to be 100% honest, but it feels good to get it all out there.
I try to tell everyone. I met someone today that took antibiotics for a while. Has seizures and arthritis, bit thinks that is all seperate. I told her she needed to suspect Lyme and coinfections and check it out. I know she didn't listen, but that is totally up to her.
I knew nothing until I got it. And I still didn't know enough early enough, and if I can help anyone I will. I want to help make a difference. I've helped a number of people get the correct treatments and I am so glad.
I feel we are responsible to get the word out, because it is a complicated disease and the most doctors don't understand the severity of it.
Posted by CapriceMom (Member # 4942) on :
Interesting question... and replies.
I tell many people that I encounter because the more peple who hear about it the better it will be for us and our doctors in the long run.
It has been my experience, however, that close friends and family can be the least supportive.
If you really want to talk Lyme, come here or find a local support group. Most non-Lymies have a low tolerence for the day-to-day challenges of Lyme and Lyme treatment.
Let's face it. Your family and close friends have to deal with the consequences the most.
If you find people pulling away. Just stay strong. Do the treatments.
If you don't eat really healthy already, learn to do so.
When you come out on the other side, and you will, get involved with some activities that you enjoy and make some new friends.
When you are healthier and back on your feet, maybe the ones who backed away will come back, maybe not, but you will be okay. Posted by QuietFury (Member # 15829) on :
I have been sick for about 20 years. I was diagnosed with fibromyalgia, chronic fatigue syndrome, and a long list of other assorted "syndromes" and "idiopathic" nonsense. During those years, I steadily got worse. I hated telling people because of the stigma associated with those illnesses. Many people thought I was just a nut case.
Finally, just about 2 months ago, I found an amazing doctor and was diagnosed with (very) late stage lyme.
During the past 2 decades, some of my friends - and my own brother - had the not-so-subtle attitude that all my health problems were in my head. It was a very difficult and lonely time. Now that I have been diagnosed with lyme, these same people believe I am truly sick. Nothing has changed, aside from the label stuck on me.
It's sad that people require another person to be defined by a label they're comfortable with before they can believe that person is truly sick.
Posted by s0ngbird1962 (Member # 16395) on :
So far, I'm telling people about my 5 year old.
But now that he is having visual hallucinations/tingling headaches, don't think people understand.
He also has been vomiting for 2 years (infected '06, misdiagnosed at that time although he had flu symptoms & rash), only diagnosed after it affected his knee.
Husband is afraid to tell the school (doesn't want our child to be labeled as psychotic).
Today went to his pedi, requested a referral to a LLMD, was shut down. Said my son had "adequate treatment."
Pedi said, "You need to be careful to not over-treat" He has sent us to gastrologist, neurologist, and ears/nose/throat. Son having tonsils out)Oct 9th, MRI Sept 3rd.
Agrees that son is having hallucinations, but said, "sometimes we never find out why".
Doesn't want us to leave Boston hospital where he has seen all the "ologist", sending us to an infectious disease specialist now.
This is the last hoop I'm hopping through. Very discouraged, feel like no one is listening.
Posted by lymeladyinNY (Member # 10235) on :
Hi Songbird - forget about Infectious Diseases doctor. Most say the same thing - Lyme is all gone after a month of treatment.
And I'm not surprised your pediatrician wouldn't refer your son to a Lyme specialist. You'll need to find one yourself.
Go to Seeking a Doctor on this website and you'll get information about finding a Lyme-literate doctor in your area. Best wishes!
- Lymelady
Posted by abbyjo (Member # 16073) on :
Hi Songbird, I totally agree with lymelady. Find a LLMD asap. They are the only doctors that understand how to treat the disease. Really, Truly get the help. My thoughts are with you. You are not alone.
Posted by mrs.scrappy (Member # 14520) on :
Even though my husband doesn't talk much about having Lyme except to other Lymies, I tell people.
By mentioning his illness, we have received lots of great support, suggestions for wonderful LLMD's, suggestions for good probiotics, good books to read, and just a feeling that we are not alone.
Also, by discussing his symptoms, dear friends of ours were able to get immediate treatment for Lyme after a tick bite.
Our friend knew he was bit, got quite sick, but had no rash and tested negative.
Because he knew of my dh's experience, he pressed for meds immediately.
Sometimes, sharing our stories can help others avoid what we have gone through.
Don't give up. It's okay to get discourgade sometimes. This disease is exhausting not just for the people who have it, but also for their caregivers. Just take a deep breath and focus on helping your son get well, and yes, perhaps it is time to find a new doctor for your son.
Best wishes.
Posted by toby67 (Member # 17143) on :
so i pretty much left my ex because in his eyes i was weak, lazy, and a hypochondriac... (20 years of hiding pain meds so i wouldn't have to listen to his grunts.) he almost had me convinced i was just falling apart! friends can be a pain too, they don't want to hear it, and i've decided i don't want it to define me in their eyes anymore... so i've found you guys instead! yes, it's frustrating!!!!
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