posted
I just can't believe some of my friends, who know what I've been through with getting diagnosed with lyme and co. but who just turn a blind eye to everything I keep telling them about this disease.
One friend was suffering with a lot of the same vague symptoms that I had, but she had more pain. She had finally agreed to contact my LLMD for an appointment, but then a doctor told her she definitely has lupus, so she won't even see the LLMD now.
She still feels like crap, and she swears her doctor is completely correct.
What kills me is that in the town where she used to live, there are a number of people who have the exact same symptoms she does, and some have also been diagnosed with lupus. They're trying to figure out what is in that town that is causing the rash of lupus cases.
Yes, I have told her that lyme can be misdiagnosed as lupus, MS, CFS, etc. etc. but she's certain her doctor is right.
Now I just heard yesterday that another friend is very ill. He's had fevers and pain from head to toe, along with other vague symptoms. He is diabetic, so they keep passing it off as something related to that. But the docs really can't figure out what's wrong with him.
I asked if he's been tested for lyme. Yes, but it was negative, so we know it's not that. So onto my soapbox I go, reminding them of what I went through with negative tests and doctors who didn't have a clue.
I got hold of a pamphlet from our lyme support group that has an extensive checklist of symptoms that I'm going to mail to this friend. Not that I think it will help.
I have also been very vocal about publicizing the UOS coming up on our PBS station. Hoping that at least some of my friends will watch.
Posts: 303 | From Pennsylvania | Registered: Jul 2010
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
I share your frustration. We have some good friends who we have gently suggested to that they have their child tested for lyme. He has ADHD, ODD, tics, horrible rage, sleeping problems, and is growing very slowly. He is a magnet for mosquito bites and they have gone camping in the northeast every summer for years.
I also have a good friend who got tested but it only showed one band. Her doctor thinks it's just Vitamin D deficiency. She has aches, gerd, brain fog and fatigue. She told me yesterday she has sleep apnea. She is allergic to a whole bunch of antibiotics so I don't know what they would do if properly diagnosed.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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posted
It's truly like living in the "TWILIGHT ZONE"!!
I continue to step up on the LYME Soap box because I wish someone did for me....
The level of ignorance and the REFUSAL for dr's to just look into LYME deeper baffles me??
It's funny about the lupus dx though...because that test the ANA is a non-specific test for auto-immune which Lyme patients seem to light up on.
but yet...dr's will dx and treat on that test?? IT"S CRAZY!!
Posts: 501 | From Hudson Ticky Valley, NY | Registered: Aug 2009
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
You can lead a horse to water. You just can't make him drink it.
Remember there are people who think our doctors know everything. They don't realize that they only know what they know.
If they don't know lyme & co, then they don't know EVERYTHING. We call them ducks.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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