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: 6495 | From Louisville, Ky | Registered: Jan 2002
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
moving to general support
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
My friend with lupus just posted this video of Julian Lennon taling about Lucy Vodden, the girl about whom "Lucy in the Sky with Diamonds" was written.
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Honestly, i dont even try to convince people anymore
I give you the info and do with it what you want.
I recently went to a kids bday party at a relatives house. Their house is against the woods maybe 5 yards away from the yree line. Lots of leaf litter, and.a family.of foxes. I contemplated telling them how dangerous their yard was, and at a .high risk for ticks.
I decided not to. I may tell them at some point, but i am sick of being the lyme disease poster child all the time. I hink after awhile we come across looney. Even though.you think your friends understand what you have gone through. They likely have no clue. How could you if you didnt experience it.
I just wait for the phone calls and emails that say oh no i just found a tick, what do i do? Then i can tell them and they wont isten to me anyway.
Posts: 3905 | From USA | Registered: May 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
map said.. and very rightly so...
"You can lead a horse to water. You just can't make him drink it."
It is so frustrating to try to get folks to pay attention that I had to change the old saying to..
"You can lead a horse to water, but you aren't allowed to hold his head under it."
posted
What annoys me the most is the people on the CEBV forum, 7 to date, that have tested positive for Lyme. None have come back to that forum and said they tested positive. You would think they would try to help others. Some are on this forum.
Meantime, I am a one man band who constantly suggests proper lyme testing and seeing a LLMD.
Irritating to say the least.
Posts: 671 | From Fort Myers, Florida | Registered: Jun 2009
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posted
Peoples ignorance on this subject truly bafils me. I have been sick since I was 8 years old but when my family finds out I have made a trip to see my doctor they still think I'll say my doctor says I am better. I have always told them that I tell my doctor how I feel and that treatment goes by how I'm feeling.
They still think that whenever I start a new medication that I will be instantly cured. Just like they will never understand why I cannot commit to doing anything. People simply do not understand how you can be feeling okay but minutes later not be able to move. On Easter Sunday my uncle was telling me how he was just pulling ticks off himself. I told him that he should start antibiotics and he told me it didn't matter because he used to have lyme disease but it was now in remission.
He then looked at me and said your lyme disease in remission right. Although I wanted to scream at him "no of course my lyne disease is not in the remission, do think I'm disabled for the fun of it" I simply replied "unfortunately i am still having many symptoms including seizures from this disease." What made it even sadder was the fact that I thought he was one of the only people who I thought got it more than most.
I used to think that people didn't know about this disease but if they were educated their opinion would change. I now unfortunately I think some people will never get it. My own brother has neurological lyme disease but still does not understand that I am not exaggerating about my symptoms.
Also, a year ago my mom's best friend pulled a tick off herself. She knew how sick I have been so she went to the doctor and got doxycycline. In Florida it's amazing that she got a prescription! Unfortunately a few days after taking it she got very ill and her doctor told her it was an "allergic reaction" even though we told her it was just a herx.
She now has many problems including a newly diagnosed thyroid problem and heart palpitations and still won't go back to the doctor. It seems like the list goes on and on. My good friend,who has also been having strange symptoms for years, called me last Saturday to tell me to her chiropractor, who had been previously diagnosed with alzheimer's, really have lyme disease.
Even knowing this she still did not think that the symptoms she has had for the past 7 years could be Lyme. Things she has described to me you could not read in a text book or online and could not describe unless you had Lyme. All of these situations and others with me so sad. Unfortunately, nothing will change until everyone is educated and the disease has personally affected them so they can not ignore it any longer.
Best wishes and God bless,
Lindsay
-------------------- "One day at a time"
Current: -1.2 IM bicillin three times a week -1.25 IV Vancomycin every day -IV glutathione and IM B12 -Byron White since Jan. 2011 -ALA, Yasko protocal, Adapten-All, thyrosol, Pekano, phosphalipid exchange, probiotics, oregano... Posts: 390 | From FLORIDA | Registered: Jun 2007
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
You can lead a person to a fact, but you can't make him think.
One of my favorite recent quotes.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Not able to read what others have posted or all of your post.
but, I have stopped suggesting they see a LLMD. Wasted energy on my part and I just don't have it to waste.
Besides...most of them are able to do more than I am able to do.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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