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» LymeNet Flash » Questions and Discussion » General Support » Need to rant

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Author Topic: Need to rant
MissMari
LymeNet Contributor
Member # 11274

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Hi everyone,

I'm new to this board, but not at all new to the subject of Lyme. I've had this disease for at least 12 years now, after taking nearly 5 years to diagnose properly. Some of you may have already heard of things like this --- I had been diagnosed with RA, MS, depression and other conditions, even though I had a positive Lyme test; my doctors did not believe it was accurate. Oh, yes, I had the rash (even pictures of it) that showed up over half of my thigh, and then in a few other places too; the headache/stiff neck; the joint problems; by the time the diagnosis came in I had an arrhythmia and CNS problems too.

OK, so that's my story, and that's probably more than enough of it! I just needed to post because I'm tired of this illness; I'm tired of the lack of knowledge or concern about it in the medical field (BTW -- I'm a medical lab tech myself!); tired of the effects that it has had on my family, work, and life. It is SO frustrating!!!! But I'm sure many of you have been there too, so you know what I'm going on about.

Thing is, it seems that if you don't have this disease, you really can't understand what it feels like to live with it. [toilet]

--------------------
The Bite: July 1995
Next 13 years: Treated for things I didn't have
Symptom total: 45
1 faint Lyme IgM May 2000
5 More negative tests
IGeneX says YES! 3/16/09
Finally feel human: 2012

Posts: 120 | From Plainsboro NJ | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
Lisianthus
LymeNet Contributor
Member # 6631

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Hi Mari,

Welcome to the "Bug Club"

I understand your frustration as many of us do. We ahve all "been there done that". Are you being treated with Abx(antibiotics) at the moment? Do you have a LLMD(Lyme Literate MD)?


It is very discusting to me that you had pictures of the EM rash and they still refused to acknowledge that you have lyme... Ignorant!


I have a friend (well friend of my husband) He was bit by a deer tick while hunting had a bulleye rash right after the bite. He then went to a doctor and gave him an ELISA which came back negative, so he was told "You don't have LD".


Even though now(10 years later) he has every symptom and gets sicker and sicker each passing year. But will not believe anything I say about LD, he believes the doctor, after all I'm not a doctor!


Lisi

--------------------
yahoo 360 http://360.yahoo.com/my_profile-UqSNGiA9crUMRW.lFNGN5Jk-?cq=1

Posts: 986 | From Michigan | Registered: Dec 2004  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

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 -

Glad you found us! This is a great board for information and support! [Smile]

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95726 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


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welcome, i'll send you a PM, private message, with my 45 pages newbie links/advise. [Wink]
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375

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Dear MissMari,

I am glad you know what you have and that you found this site.

It has been a lifesaver for me in more ways than one.

Although I haven't been sick for as long as you, I can relate to how you feel.

Although my mom (who is an angel) supports me unconditionally, she still doesn't understand Lyme.

I don't know where I would be without this place.

Welcome!

Geneal

Posts: 6250 | From Louisiana | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
Meg
Honored Contributor (10K+ posts)
Member # 22

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Hi MissMari--

Welcome!

....and I'm sorry you have had to deal with this disease.
Betty's sending you some great information.
All I can say is read and read again!

--------------------
Success Stories---Treatment Guidelines

Posts: 10010 | From somewhERE OVER THE Rainbow | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
catalysT
LymeNet Contributor
Member # 10786

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MissMari - Welcome to the board, however I'm sorry that you acquired lyme disease in the first place.

Just know that you -are not alone-, and that various people have and are (myself not excluded) going through simular struggles with lyme and other diseases and problems.

Keep in mind that it's not just lyme disease that is plagued with ignorance in the medical field. Lyme is just an epitomic example of such ignorance.

Lyme has no preference of types of people.

Hopefully you (and everyone else here) can get the information you need to get better here, and with some time can go on living a more fulfilling life.

Be sure to read the information that Betty sends you, because it is _very_ useful.

-welcome-

--------------------
"You know, the worst, meanest, nastiest, ticks in the world are politicks," - Steve Nostrum

Posts: 242 | From South NJ | Registered: Dec 2006  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


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thank you lymenetters for the compliments on what i send folks on my newbie links including trepatrol's link and my advise! i consider that the HIGHEST honor; my LYMENET PEACE PRIZE! [bow] [Wink]
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mississippilyme
Member
Member # 11205

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MisMari,

You are off to a good start. Finding this forum saved my life.

I am not an expert in the medical field but I am one of the fortunate ones having this disease.

My dr. says that most of the tick-born diseases respond to Doxycycline. I believe I paid twelve dollars for that one.


Because there are many co-infections, generally before it is over we go through many different antibiotics to find out what our infections respond to.


The most expensive part for me was getting that diagnosis. I saw 12 MDs, passed the Western Blot test, the whole nine yards.

We just have to look ahead of all the disappointments and try and help each other get through this mess.


If you are taking antibiotics you also must get rid of toxins created by these decaying bacteria.

Hope you can find the right help. Keep us posted.

We will pray for you.

Sherry [Smile]

Posts: 69 | From mississippi | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
   

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