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Posted 1/10/2010 2:37 PM (GMT 0)

I have been struggling with Lyme, MS and Hashimoto's disease since 2003.  Had a very good year this year, however, on Ceftin, but progressively went downhill late fall/early winter.  My doctor in NY ran a battery of tests mid-December.  Came back as positive, once again, for Lyme, borderline positive for Bartonella and now also positive for Q Fever.  My result was 1:1024, which is extremely high, almost six-fold of what a normal positive would be.

Has anyone been tested, treated, or diagnosed for Q Fever?  I am being referred to an infectious disease specialist on Staten Island, but traveling from PA is difficult.  I don't have any recollection of a high fever, which is a classic symptom of the disease.  Heard from the PA DOH, but not very helpful, as this is the first time the DOH nurse ever handled the reporting of this disease.  Am waiting for my entire family to also be tested.

FYI:  Q Fever is a Class 3 biological warfare agent.  (Anyone read Lab 257??)

Posted 1/10/2010 3:48 PM (GMT 0)
I recently tested positive for Q fever also. Mine was 1:32. I live in PA and see an LLMD in Kennett Square. He said he treats Q fever the same as he treats Lyme. I have only been seeing him for a little over 2 months and showed improvement after 2 weeks on his treatment.

Did they say they wanted your whole family tested? do they have Lyme?

Class 3 biological warfare agent? that sounds scary!
Posted 1/10/2010 3:56 PM (GMT 0)
Maybe you have read this already? It's from the CDC and discusses the fact that many people who are positive do not have symptoms and that it can be chronic. The end mentions biological warfare. So I figure that if the CDC recognizes all this, then the truth is probably more dire.

I've noted that you have to copy and paste the link.

http://www.cdc.gov/ncidod/dvrd/qfever/index.htm

Posted 1/10/2010 5:10 PM (GMT 0)

Jenn in PA: To my knowledge, my family members do not have Lyme.  My NY physician indicates it is standard procedure in NY and NJ that the DOH tests all family members.  (The last person who tested positive for this in their practice ended up the entire family was positive.)  He has a call in to the PA DOH regarding this and is awaiting a return phone call.  I have been on treatment (Doxy and Plaquenil) for six days now.  I am to have an echocardiography to check for any vegetations on the heart valves and am also to have a consult with an infectious disease specialist.

+Lyme:  Yes, in doing research on the internet for Q Fever, I did read the information on the CDC website, but thanks for sharing.

Posted 1/10/2010 8:46 PM (GMT 0)

I also tested positive for q-fever back in august 09.  My dr has been treating it with doxy.  My titers have floated around from 1:64 to 1:32 to 1:16 and back up and back down.  Have any of yours done this?

My dr even took me off doxy for a month to change up my lyme meds and said you can still show positive for q-fever even though you are over it.  Have any of you heard this?  Shouldn't I treat until my titers go away?

thanks,

txgirl09

Posted 1/10/2010 9:14 PM (GMT 0)

I have only had one test that showed a current (IgM) infection of 1:1024.  It's my understanding that once on treatment, after about 4-6 weeks, I will then have a repeat test.  If the results show a shift to the IgG (past infection/antibodies), this will be a confirmation that I had the disease. 

My doctor has not discussed acute vs. chronic infection with me, although I have read about this on line.

I'm just new to this, so don't know how long to treat based on titers (??) and whether you can still show up as positive even though you are over the disease.  I thought that you would eventually convert from IgM to IgG, but again, not sure.

Does anyone have hunters in the family?  My husband harvested an elk this year that was just loaded with ticks.  Wondered if there was any correlation between that and my becoming infected with Q Fever????

Posted 1/10/2010 9:41 PM (GMT 0)
Are you in phase i or phase ii? Mine actually went from phase 2 to phase 1 and I'm a bit worried now. My numbers have been low, but its still scary.
Posted 1/11/2010 12:08 AM (GMT 0)
how do you know what phase you are in? I was on Doxy for about 8 weeks and still show positive at 1:32.
Posted 1/11/2010 4:34 AM (GMT 0)
the blood test shows you which phase. i was on doxy for 8 weeks and it still went to phase 1 which is the worst.
Posted 1/12/2010 12:52 AM (GMT 0)
lymefrustration --

could you contact me? i need to go to an infectious disease dr who has treated q-fever and can not find one.

Thanks,
txgirl
Posted 1/12/2010 1:32 AM (GMT 0)

I don't know how to contact you as it says your e-mail address is unavailable.

I'm not sure if I'm allowed to post the name of the dr. to whom I'm being referred on this board (???).  Maybe you could search based on his address (314 Seaview Avenue, Staten Island, NY  10305-2246) and/or phone number (718-668-3417).  Good luck!

Posted 1/12/2010 1:58 AM (GMT 0)
thanks lyme frustration. i'll see if i can find it.

i tested positive originally for phase 2 and now phase 1. my llmd is so puzzled and i need another opinion.  no one has mentioned testing my family, as i am new to all of this too.

have you gone to his infectious disease dr yet?

Post Edited (txgirl09) : 1/11/2010 7:01:32 PM (GMT-7)

Posted 1/12/2010 2:29 AM (GMT 0)
No, I am supposed to call and make an appt, but to be truthful, I am dragging my feet. Since I've already started treatment, it's not urgent (I don't believe). This all costs so much money! I need to call my PA insurance and see if any of it will be covered, and have not yet done this. The last time I went to see the "East Coast leading MS specialist" on Long Island, I was bitterly disappointed, as I REALLY, REALLY did not like her AT ALL. However, from what I've read this doctor on Staten Island is highly regarded by his patients. And, quite fankly, I also don't know of anyone else who has treated Q Fever extensively, so don't know where else to turn locally.

I really don't understand the different "phases" of Q Fever. The DOH said I tested positive for one of the four phases. My NY doctor referred to it as a positive IgM (current) infection, which should convert to IgG (antibodies) in about 4-6 weeks time, if I understood him correctly. He said patients testing positive for Q Fever aren't showing the classic symptoms (such as me not remembering any high fevers). It's all very confusing ... which is why I need to call and make the appt, so I can get some more answers.
Posted 1/12/2010 3:08 AM (GMT 0)
My bloodwork does not mention any phases, unless I am looking in the wrong place? I mean it clearly should state phase 1 or phase 2?
Posted 1/12/2010 4:06 AM (GMT 0)
jenn,

yes, mine clearly says phase 2, negative....phase 1 and then the titer of 1:64. (I recently had it done again and suspect my number has gone up as sick as i've been.)

what does yours say? just a number?
Posted 1/12/2010 4:08 AM (GMT 0)

LymeFrustration said...

I have only had one test that showed a current (IgM) infection of 1:1024.  It's my understanding that once on treatment, after about 4-6 weeks, I will then have a repeat test.  If the results show a shift to the IgG (past infection/antibodies), this will be a confirmation that I had the disease. 

My doctor has not discussed acute vs. chronic infection with me, although I have read about this on line.

I'm just new to this, so don't know how long to treat based on titers (??) and whether you can still show up as positive even though you are over the disease.  I thought that you would eventually convert from IgM to IgG, but again, not sure.

Does anyone have hunters in the family?  My husband harvested an elk this year that was just loaded with ticks.  Wondered if there was any correlation between that and my becoming infected with Q Fever????

my dr only tested me for IgG.  I don't think he even knows to test me for IgM.  That's why I need to go see someone else, but no one else seems to know anything about this!
Posted 1/12/2010 5:49 AM (GMT 0)
is there another name for Q fever. what is it called on blood work???
Posted 1/12/2010 12:24 PM (GMT 0)
ok I found it. It says Phase 1.

anyone know what M pneumoniae IGM Abs is? I show a low positive for that.

Bucci- no it is just called Q fever.
Posted 1/12/2010 1:52 PM (GMT 0)
jenn,

what is your titer number for phasei 1? phase 1 means its chronic, and not acute any more.
Posted 1/12/2010 4:43 PM (GMT 0)
it says 1:32. I didn't realize that Q fever could be chronic. Great! Just another thing to add to my list!
Posted 1/12/2010 5:24 PM (GMT 0)

LymeFrustration said...

I don't know how to contact you as it says your e-mail address is unavailable.

I'm not sure if I'm allowed to post the name of the dr. to whom I'm being referred on this board (???).  Maybe you could search based on his address (314 Seaview Avenue, Staten Island, NY  10305-2246) and/or phone number (718-668-3417).  Good luck!

lymefrustration -- it looks like this dr is a pediatric infectious disease dr.  does he see adults too?
Posted 1/14/2010 2:56 AM (GMT 0)
Since my dr. in NY is familiar with him, and he is the one referring me, I'm assuming he does see adults.  I have not yet made an appt., but planned to confirm this when I do call.
Posted 1/14/2010 5:43 AM (GMT 0)
Hi Jenn,

M. pneumonia may stand for Mycoplasma pneumonia IgM antibodies. There are lots of websites about mycoplasma. One link is provided for you below. I'm sorry you will have to copy and paste. I don't know how to make it "work" automatically.

Best wishes to you, bablymers mom


http://www.shasta.com/cybermom/asimple.htm
Posted 1/14/2010 8:57 PM (GMT 0)
I went to my GP today because I've been having stomach pain. I told her I was positive for Q fever and she said she never heard of it. So she goes out and asks another doc and they said oh that its really rare, you get it in the tropics. She said she was going to do research on it, and that she was sure it was something you could show false positive for since she'd never heard of it.

She said just like Mono, you can show positive for Lyme even though it's really just mono. I've always been really happy with my GP, she's the one who diagnosed me with Lyme. But I left there feeling like geez, do I not have Q fever? do I really still have Lyme, am I crazy? I showed her my latest bloodwork and she didn't even wanna make a copy of it? Ugh I just don't get Docs.
Posted 1/14/2010 9:41 PM (GMT 0)

JennInPA said...
I went to my GP today because I've been having stomach pain. I told her I was positive for Q fever and she said she never heard of it. So she goes out and asks another doc and they said oh that its really rare, you get it in the tropics. She said she was going to do research on it, and that she was sure it was something you could show false positive for since she'd never heard of it.

She said just like Mono, you can show positive for Lyme even though it's really just mono. I've always been really happy with my GP, she's the one who diagnosed me with Lyme. But I left there feeling like geez, do I not have Q fever? do I really still have Lyme, am I crazy? I showed her my latest bloodwork and she didn't even wanna make a copy of it? Ugh I just don't get Docs.

Are you serious?  Your GP had not heard of Q Fever?  Geez!  I'm trying to research this q fever more myself too.  I went to my internal medicine dr today who said my titers are very low, and he does not think my symptoms are from the q fever, but repeated the titers again.  He did say its very rare.

I think i'm going to go go an infectious disease dr to check out the q fever more. 

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