cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Didn't expect to post this, but I can't release it until I get it off my shoulders... Feels like someone's punched me in the stomach.
I visited with extended family this weekend, and discovered that thanks to the Washington Post article on Lyme (the one-sided article a while back, remember?) my entire family has become "expert" in Lyme treatment. Thanks, Washington Post (not).
Here's a quick sample of my day: standing by the pool with my brother-in-law, I hear, "Have you considered a second opinion? It's been 2 years - the problem is your doctor or you wouldn't have relapsed."
Resting on the couch, away from the activity, I hear, "Did you know that there is a controversy about Lyme?" (as if I wouldn't), "It is the abx making you sick, not a disease." (meaning, stop taking your meds and choosing to be sick) "Find another doctor."
From my sister-in-law, while watching our toddlers play, "Yale has a Lyme research facility - go there." (alumni in the family does not help)
From my parents, "Yes, go to Yale, go straight to the source."
...Why do we have to fight this battle even with our families? It is so sad.
Anything I say to counteract the Wash Post article just earns me a "crazy" label, and I'm tired of fighting it.
Going to release this now, just needed to say it before letting it go.
Thanks for listening, Cactus
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
I'm sorry, I hope this does help let it go. I don't tell anyone much so I don't have to hear it, anymore.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
My husband read the article from Forbes, and he believed it.
I tried to explain a few things, but he wouldn't listen.
Sigh...............
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Thanks, True! It already has helped me start to let it go, really.
I was used to the usual silence on the topic of Lyme (from in-laws, etc), so hearing them quote the IDSA stance was a shock to the system.
Hmmmm, silence really is golden, huh?
Carol, you too? ...Hugs to you! Let it roll off your shoulders...
Amazing how someone can read one article and instantly feel they understand all aspects of a complex issue!
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Lyme is such a complex, horrifying disease.
I still don't get it all.
I think that sometimes people believe what they want to believe
Or what is easier to believe.
Obviously they want you to get better.
They just have not educated themselves on Lyme disease.
Hang in there. I've got a family full of them too.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
Some people are just opinionated about anything and everything. They read an article on airplanes and all of a sudden, they're aircraft engineers.
I would simply say "Well geez, maybe we should make you the middle manager of Lyme disease treatments in the US, since you know soooo much... you just pay attention to your hotdog there before you get schlop on your face. And how's that 5th marriage been treating you lately, buddy(or something similar--relevant)?"
-------------------- Never walk through a cornfield backwards.
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i get the same thing from hubbie.
he's really bad tho. he can see a commercial or something advertising a pill and he starts on the old "all americans are drug addicts" routine and he just won't drop it.
i don't tell him when i have a doctor's appt or anything, it just brings on more fights.....
it's better off to fight this battle alone
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi catus
I do feel for you, I get this alot from friends & family. It is very frustrating. In my experience people only want to believe what they want to believe ~ even when cold facts are presented to them. Here's a link that is very compelling for the truth about lyme:
But in the end I have had to tune them out because it's stressful & I just don't have the energy to try to convince people anymore.
hugs Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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bettyg
Unregistered
posted
i'd like to suggest LYMEDAD'S letter to family/friends; written from the heart!
lymedad Frequent Contributor Member # 8074 posted 20-04-2007 03:52 PM
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.
pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
Cactus, families sometimes have perverse ways of demonstrating their love.
What do they think of the attorney general's civil investigation into the IDSA guidelines process?
Are they aware of the 2 standards of care?
Do they know it can take years to recover after years of misdiagnosis and nontreatment?
Bottom line, it's your body and your choice. If you feel up to it, thank them kindly for their concern and say you already know about Yale and their track record with people with chronic Lyme disease, and you have to do this your way.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I'm sorry you don't have support. I guess it's better to be out here where it doesn't exist and no one knows squat.
Would they say the same thing to a cancer patient.
"Gee, Mary, your chemo isn't working, looks like you're just going to have to suffer. Cosmo says there isn't much hope for you anyway. Good luck. Can I have your Tupperware?"
Posts: 2903 | From AZ | Registered: Feb 2006
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Cactus, have you told them that the second opinion says that if you are not cured by now,
then you have incurable post-lyme disease,
and that you prefer the opinion that says you will slowly recover?
Actually, I think most of us have extended families who are terrified.
(After all, if such a thing could happen to us...)
We lymenetters have each other, and enough contact to get a grip on the reality of our
situation, while they are struggling to flail for an easier answer for us.
My mom was pushing the IDSA on me really hard until she met somebody from lymenet in a store.
That lymie gave her the lowdown that she couldn't hear from me.
Many thanks to you lymenet friends!
bejoy
-------------------- 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
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