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» LymeNet Flash » Questions and Discussion » Medical Questions » Has anyone been incorrectly diagnosed with mono?

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Author Topic: Has anyone been incorrectly diagnosed with mono?
cutie
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For all you smart people...Just a question...is it possible to be incorrectly diagnosed with mono when you really have lyme?

Thanks,
Cutie

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Cutie

Posts: 125 | From Atlanta | Registered: Dec 2005  |  IP: Logged | Report this post to a Moderator
LymeLaura
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Yes, over and over again!
Posts: 132 | From Kentucky | Registered: Dec 2004  |  IP: Logged | Report this post to a Moderator
cutie
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Really? What about the blood test they do for mono? Does that not test specifically for mono antibodies?

I'm asking because I was diagnosed right before all this stuff started 12 years ago with mono. I still don't think it was mono.

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Cutie

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cantgiveupyet
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Yeppers,

A friend of mine was told she had Mono by an ID doctor. (no suprise right) she had lyme and still has never tested CDC positive.

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"Say it straight simple and with a smile."

"Thus the task is, not so much to see what no one has seen yet,
But to think what nobody has thought yet, About what everybody sees."

-Schopenhauer

pos babs, bart, igenex WB igm/igg

Posts: 3156 | From Lyme limbo | Registered: Oct 2005  |  IP: Logged | Report this post to a Moderator
Corgilla
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Hi,

Yes. It was the first diagnosis I had and after that, my life was never the same. It was over half my life ago so I don't remember if I had a blood test or not.

I had initial fatigue, sore throat and headaches then after a week or so, I felt fine. I was a bit surprised that I wasn't bedridden for longer but never thought much more about it.

Corgilla

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"I'll never forget good old Whatsisname."

Posts: 694 | From PA | Registered: Jun 2003  |  IP: Logged | Report this post to a Moderator
cutie
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Corgilla - That sounds just like me! I wasn't bedridden with mono like you hear about. Sore throat, aches, fever, fatigue etc but I got better and then all these crazy symptoms started popping up 2 years later.

No clue where I would have gotten mono! I knew no one with mono.

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Cutie

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Christine202
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Absolutely - Your mono titers can become elevated if you have Lyme.

That happened to me years ago when I was the sickest person I ever saw.. GP said I had elevated Mono titers and Lyme titers...suspected Lyme then called an Infectious disease Dr...then called me back and said

" No you dont have Lyme, your Mono titers just elevated your LYME titers" !!!!!!!!

So lesson from the Idiot dr is: I guess we ALL must have Lyme titers in our bodies!!

The ignorance really gets me.

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Christine202
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Just forgot to add that i had a bad case of Mono when I was 17....and we also believe I have been infected with Lyme since childhood.....
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Corgilla
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Hi cutie,

Come to think of it, I didn't know anyone else with mono then either. I even had a boyfriend and he didn't get it. Non-transmisable mono. There's a new one.

Christine, That's interesting about the mono titres.

Hurrumph is all I have to say.

Corgilla

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"I'll never forget good old Whatsisname."

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cutie
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corgilla,

i had a boyfriend too at the time! He didn't get it either and he was the first boy I had ever kissed! Wierd, huh?

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Cutie

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Corgilla
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Look what I just found on the Mass gov't web site:

"A false positive test may occur if a patient is producing antibodies which cross react on the
test, either for unknown reasons, or in response to a disease such as rheumatoid arthritis,
infectious mononucleosis, systemic lupus erythematosus, spirochetal periodontal infections,
relapsing fever, leptospirosis, Rocky Mountain spotted fever, or syphilis."

The link is:

http://www.mass.gov/dph/cdc/epii/lyme/physician_manual.pdf

I was looking up an answer for the "Lyme in Martha's vineyard?" post and read farther on. Lo and behold, I find this gibberish.

Happy New Year All,

Corgilla

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"I'll never forget good old Whatsisname."

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cutie
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Wait, so what does that mean? That a person may test positive for lyme if they're producing antibodies to any of the above listed? What about a false positive for mono if you have lyme?

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Cutie

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Lymied
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I was diagnosed with Epstein Barr Virus...I kept questioning the doctor that diagnosed me...I don't remember ever having mono which is what precedes EBV.

Turns out 95% of the population has antibodies to EBV...it is that common. So when physicians blame Chronic Fatigue symptoms and Fibromyalgia like symptoms on EBV - in many cases I feel it is bogus.

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Pride is concerned with who is right. Humility is concerned with what is right. - Ezre Taft Benson

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Corgilla
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Hi,

In all of the stuff I've read about TBDs in the past 4 years, I've never seen anything like the statement on the Mass website.

I think it's all bunk. I just posted it to show cutie et al where some of this misinformation comes from.

The funny thing is, a lot of the stuff on there is very good. That's how bad rumors get started. You put a little bit of junk mixed with good info and everything you say seems golden.

I hope my posting that quote doesn't make people think that their positive lyme test means they really have RA or something.

If I start seeing that, I'll remove my post. Let me know if you think I should; either with PM or on this thread.

Take care,

Corgilla

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"I'll never forget good old Whatsisname."

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Lymied
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Hey Corgilla,

I was just posting a reply to your Martha's Vineyard Post. Thanks for that link...it was very interesting and helpful to me in regards to the Tularemia. That is extremely interesting to me.

I am starting to think that is what I had/have. I have always herxed the hardest on doxycycline - although Mepron was viscious too and flagyl...so who knows...Tick Soup I guess.

I think people will realize what your post means on this thread. So many lyme patients I know have high EBV titers...at one point I wondered if it was a cross reaction in testing or it was just proof that the immune system was in overdrive.

Take care...

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AlisonP
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Hi there,

I was blood tested positive for mono after being sick for months with sore throat, etc. This was like the final straw that put me in bed for the past 2 years.

Of course I had Lyme, but I was interested that I tested positive fo mono as well. And I think it was the type of test that can tell the difference between an active and inactive infection, though I am not sure.

I think that it is entirely possible to have both diseases concurrently. I think that the mono may even become activated to help the body destroy the high amount of dead and dying cells produced by the lyme and co-infections.

Alison

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The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow

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mbroderick
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I believe that there are many strains of Epstein Barr virus (mono) and that people with Lyme are very susceptible due to a compromised immune system. I test positive for Lyme AND EBV, as do quite a few others.
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BostonLyme2005
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Hi,

I had Mono before and it was nothing, Nothing, NOTHING like this.....LYME!

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henson2
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I seem to be the odd one out here. I had the showing of "old infection" for mono, i.e. that my body had been exposed (as most of us have) but had fought it off.

As for a positive current infection mono test, it came back negative, time and time and time again. Despite all the sx that made it impossible to deny that I was truly sick w. something.

Thank God, really, as it was a CFS person who said to me: "Um, you sound to me an awful lot like you might have Lyme." I didn't even believe her at first, because the Drs couldn't have been wrong for almost 6 years, could they?

Yes, they were wrong! Lyme diagnosis was finally confirmed.

This woman is my guardian angel.

I never once showed positive EBV (mono) or CMV (another virus) test.

Just goes to show how different we all are.

Best and warmest good wishes to all.

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