bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
So...before I was diagnosed with Lyme I first thought all of my symptoms were stress / anxiety. I had a TON of stress / anxiety back in Feb / March. I have never really had this before. My family and several docs told me it was anxiety. So I joined an anxiety website (which I shall not name) which provided some initial guidance.
Now that I have been diagnosed with Lyme, I went back to share my story and encourage people to consider Lyme as the root of their problems. I specifically stated that it is obvious that not everyone with Anxiety has Lyme. But SOME cood and we should get it checked out.
Well..I got creamed. People got hostile and said I was terrible for bringing it up as anxiety sufferers were prone to worry. They also said that the web site founder stated Lyme was overdiagnosed and the symptoms were too vague and most lyme patients really had anxiety.
Amazing!
By contrast...I also posted on my vestibular board (When I thought it was Labyrinthitis) and they were all thrilled to check it.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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I was terrible for bringing it up as anxiety sufferers were prone to worry. .
I know my sense of humor is inappropriate at times, but this made me LMAO!!!!
Posts: 22 | From Oregon | Registered: Feb 2008
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
Sooo, is the anxiety site founder a doctor?? Geeze!
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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I was terrible for bringing it up as anxiety sufferers were prone to worry. .
I know my sense of humor is inappropriate at times, but this made me LMAO!!!!
Me too!!!!
Same thing happens on most Fibromyalgia boards. This is not unusual for the people to be in very big denial.
And I guess the anxiety group is REALLY big on denial...so they won't WORRY!!
Ps... I know anxiety is a terrible thing. I have been known to take Xanax myself.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Okay, if they don't want to consider an infection as the source of the anxiety, perhaps they would consider supplementing magnesium.
The Lyme bacteria use up the magnesium in our cells. One of the symptoms of low magnesium is anxiety.
Well, there are so many symptoms attributable to low magnesium that it turns into an article just to list them all. But supplementing mag is an easy first step.
You don't even have to tell them how the magnesium got so low.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
egads, i must really be sick.
i couldn't help but laugh. anxiety board people getting anxious over somebody mentioning lyme.
how in the hell do they think we feel?
is that ironic or what?
lyme must be effecting my brain lately. i found humour in really strange things.
sorry.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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massman
Unregistered
posted
Anxiety is their toy and YOU CAN'T HAVE IT !
quote:Originally posted by massman: Anxiety is their toy and YOU CAN'T HAVE IT !
So GO AWAY ! [/QB]
That's true, massman!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Same thing happened to me on Healingwell. I was diagnosed with Crohn's Disease and I suggested that a bacterial infection could be the cause. I mentioned Lyme Disease.
They told me that "Lyme Disease doesn't attack the bowels, it attacks the knees".
I told them to investigate an article (When to Suspect Lyme), and the moderator said:
We don't give people false hope here. We're here to help them cope with a lifelong chronic illness, so I'm going to delete your thread.
I replied and made another thread saying "Does Anyone use antibiotics to treat their disease.�
Some responded and said �Yeah, and I've been in remission ever since.?
I told them they may want to investigate Lyme Disease as a potential source of their illness.
The moderator stepped in and said "Glad some of you are feeling better. I'm locking this thread, and Metallic, you were told once already not to bring this up. You're banned."
I told him "Whatever, at least I finally have an answer that might be curable"
He said "Good for you. Then blocked my account.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
People would rather have flesh eating bacteria or the ebola virus than have Lyme. At least in my experience.
I had a women at PT a few weeks ago tell me that she would MUCH rather have MS (she does) than have LYME because it is more well respected and what does it matter. . we all go through the same thing.
Well, it does matter. The treatment is VERY different.
*shakes head in wonder*
Posts: 564 | From Tick Hell | Registered: Oct 2008
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
So What anger is better than Lyme Disease it scares people but you may have just saved lots of lives.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
So lyme is not politically correct, is it ?
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Remember to Smile
Unregistered
posted
Okay, as if bcb's strange scenes weren't enough...
WOW! Holy s, METALLIC BLUE!
Don't any of the sheep on those boards remember they're not supposed to sip the grape drink in Jonestown? Weren't paying attention in school when we learned about Iceland & Greenland? "Healing Well"...Hmmmm...Breathe deeply and hear the birds singing... Lovely public relations stunt to use a name like that, then BAN info about (GASP!) Healing Well!
quote:Originally posted by METALLlC BLUE: They told me that "Lyme Disease doesn't attack the bowels, it attacks the knees".
Ah, now that's some of the sound public education info that's really been lacking.
So, the take-away message is, "NO good/helpful/hopeful news about cure or remission of any anxiety symptoms or Crohn's disease allowed!" Right? Reich!
Man, our moderators are a completely different breed 'cause I've read several posts here where people were allowed to share a couple ideas for effective treatments. SO weird...
I'm pretty sure METALLIC's moderator is the grandson of Rudolph's flight training coach. Smile
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posted
I didn't even know what anxiety and panic was before I got sick. I had none of it. That goes to say, I never understood why people used meditation, relaxation techniques, etc. I used to think it was weird, and never understood the point.
My bite came with huge lymph node, a papule, and a painful groin area (bart). Never saw the tick. Life went downhill from there. I went from highly athletic to practically disabled in the matter of weeks. I didn't feel safe even driving my own car, but did it anyways. I was in a state I never have been in before. I felt dizzy. I felt weird.
Doc said the infection and anxiety wasn't related as since my labwork was ok (several weeks after acute illness), she told me it must be anxiety. I told her it wasn't. I had attacks that would last hours and hours with a 200 bpm heart rate and dangerously elevated blood pressure.
Needless to say, even though I never believed it, I joined an anxiety board anyway. I would tell people I don't relate to them there, and my anxiety is from something else going wrong with my body. They would go on to say they I just had to accept it. It wasn't even comforting there. It was a bunch of people worrying about HIV and a bunch of nonsense for the most part. I was told I had to determine the source of my panic. And when I determined the source, it was illness. They told me if the doctor took my blood to rule "everything" out, then no need to worry as it's just health anxiety.
Oh, so health anxiety is why I have an elevated heart rate all the time (even when sleeping with holter monitor on beta blockers and anxiety drugs)? Don't think so buddy!
Nobody around me thought I just had anxiety. My roommate understood how sick I was. Hell, I couldn't even climb stairs. If I would ask people around me if they thought anxiety was my problem, they'd respond, "no, you're sick". Somehow doctors would miss the fact that I was sick though.
I told the anxiety board that when I determined the source of my illness, I would let everyone know. Told them I wasn't giving up as I was sick and disabled and wanted my health back (of course this is a bad thing to do in their opinion). With their ignorance, they told me they will find nothing wrong with me.
Several months later, after changing my PCP, the source was found. After my doctor looked at my new patient form and my multitude of symptoms, she said, "I'm going to test you for Lyme." It was literally some of the first words out of her mouth when I met her. She connected the infection in my groin to a possible case of Lyme Disease. My other doctor said the infection I had and my symptoms weren't even related. It was just a coincidence they came at the same time.
I told the anxiety board my story, and surprisingly, they were willing to listen that anxiety can stem from Lyme and coinfections. I wasn't expecting the support, but I was glad there was some open-minded people on the board I was on.
I never felt like I belonged on an anxiety board. I was on an anxiety forum, cardiac forum, gastro forum, neurological disease forum, undiagnosed symptoms forum, etc. I obviously felt lost and didn't know where to go.
I think there are a lot of people out their trying to accept anxiety when in reality they have another illness that suddenly brings it on. I think there are quite a few people on the anxiety boards that are probably sick with a disease causing anxiety symptoms. They found their group, and don't think it's necessary to explore any further.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
I got the exact same comment from a very ill co-worker when I suggested Lyme. Using a tone meant to convey what a horrible person I was, she said, "I have ANXIETY." Not as in, "That's my diagnosis." As in, "Only a terrible person would give a person with anxiety something to worry about."
Then she told me by email that I was "projecting my illness onto people." Like I'm the head case.
You can laugh, but I cried and had panic attacks for months. This woman screamed at me at length about what a horrible person I was. I even had the gall to mention that I was concerned about her brother who has OCD and shooting pains and heart arrythmias. She told me he was fine if he just didn't think about it.
Mentioning Lyme to anyone is a road fraught with much peril.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I'm certainly not afraid to keep sharing information openly, but many of us know the difficulty of just saying these few words:
"It's possible that XYZ may be triggered by Lyme Disease or another associated tick born infection. Just incase you haven't included that in your search for answers, read about it on another support group."
Just saying that, hostility is the usual response.
It's just the way it is. Jehova witness and tax collectors are more welcome at their door than someone mentioning Lyme Disease as a potential cause of their problems.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
quote:Originally posted by METALLlC BLUE: Jehova witness and tax collectors are more welcome at their door than someone mentioning Lyme Disease as a potential cause of their problems.
Oh, SO sad but SO true.
It's not a belief, it's a bacteria!
But, alas, we're right in there with leprosy and syphilis; just a bit nastier than cancer and open heart surgery... Man, do we Lymies need a MAJOR, quality PR campaign or what!
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
There is nothing funny about anxiety - Its brutal, but I couldn't help but laugh when I read this. It's as good as someone having bulleys's,(family member) not enough treatment and they're fibromyalgia acting up. I think no one wants to open the can of worms. I know alot of people that know me and what I'm going through don't want to start, so they fully believe what they have is what they have and dismiss lyme. It's sad, but true. Many times I wished I could have covered up, but symptoms were too many, tests were too positive and I knew it was lyme, even though in 1988, docs told me Epstein Barr and I believed them. Wasn't lyme conscious till 2002 and then it was too late.
posted
bcb...sorry about this. I believed myself to be an anxiety sufferer for the past 13 years. Brought on by what? Work? Bad Marriage? Parents? Yes, all of those things were true, but the 13 years of "treatment" did nothing. How happy I am to know that it's been lyme all along. I definitely always had underlying worries, but my anxiety came with the lyme. I'm not sure about the cause and effect. But, I don't really care. Maybe you helped just one person by posting. The one who didn't reply. If I were that one person, I would be forever indebted to you, even if you never knew.
Posts: 252 | From New York | Registered: Apr 2010
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Thanks greengirl. I just logged onto anxietycentre and I'm still getting skewered. Some are appreciative, but others say "how dare you." Even though the site's founder says flat out to rule out all medical conditions first.
I, too, had really bad anxiety when I first started having my dizzy symptoms. A sorty of "what the hell is wrong with me" fear along with numerous docs telling me I was fine.
I'm not happy to have LYme...but I'm happy to know it is the root of why I feel like crap...now I can focus on beating it!
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
Same thing happened to me on an MS site. I thought that was what I had before finding out it was lyme.
And I have severe anxiety. Can't believe they said that!
I think people just feel comfortable with their diagnosis with an unknown cause. They also trust their doctor and think he is always right!
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Campaign for the Masses.
We know they may have it. Don't be afraid to slip
in a note here and there to alert them to the
possibilities. I know how angry they can get.
It is so misinformed I have had epidemiologists
get angry with me for even suggesting they have Lyme...
Just do what you can.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
sounds like these people don't want help... i'm sorry they yelled at you for simply making a suggestion trying to help Posts: 220 | From Kansas | Registered: Mar 2010
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posted
people are stupid, if they dont want advice esp. about the possibility of Lyme, then screw em. but thats just me.
-------------------- 3 months Doxy 8 months of Tetra 7 months of Biaxin/Plaq. 4 months Doxy/Biaxin/Plaq. 5 months Biaxin/Plaq. Back on Doxy/Biax/Plaq On the road to recovery. Trying to make people Lyme Aware....... Posts: 289 | From R.I. | Registered: Jun 2009
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Remember to Smile
Unregistered
posted
quote:Originally posted by greengirl: Maybe you helped just one person by posting. The one who didn't reply. If I were that one person, I would be forever indebted to you, even if you never knew.
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
When my pulse jumped to 130 while sitting at my desk at work I was immediately diagnosed with anxiety even before any testing for a medical condition was initiated. I knew very little about the medical industrial complex at the time which really slowed down my ability to get effective help by many years.
It took me awhile to learn that doctors don't know everything despite their attitude that they do. Most of us are raised to believe that they can solve any problem and that they know what they are talking about. What a shocker when we find out about some of the huge flaws in medicine.
I cannot and will not shut up if even one person can be helped out of this he!!. Even those who adamantly refuse to listen may give it a second thought sometime down the road because of a seed that was planted when you brought up the possibility of lyme.
Bravo to all of you who dare to open your mouth in the hope of helping someone get proper care for this horrific disease!!
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
So been there!! First dr. (ten years ago now)that saw my daughter (she was so very ill) started the ball rolling in her medical records...crazy patient AND crazy mother.
What is in medical records is the gospel, so we were never able to shake that label and it caused numerous dr.s to shut the door to the real problem.
Nightmare.
I, too, never shut up...in the hopes that one day a doctor would consider that I might be right and that my daughter had Lyme.
The egos of some doctors is second to none...
Lyme was a dirty word ten years ago, (even the whisper of it suggested you were on the edge of a physcotic meltdown).
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
So...update.
Now I've been more or less blacklisted from that site. People have yelled at me and told me to STOP!!
My last post I basically said how I felt that perhaps this wasn't the place for me. I was only trying to help others consider what MAY be at the root of their problems.
The site founder then commented and the discussion was closed. Geez.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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