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Anyone been diagnosed with this or know much about it?
Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
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desertwind
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I have it - diagnosed in Feb.
Treating with Doxy 300- 400 mgs. w/ Plaquenil. Can be a co-infection of course but can also be transmitted via inhalation associated with livestock.
Can be acute or chronic. Need to compare Phase I with Phase II titers to determine if it is acute or chronic.
Chronic cases can effect the heart valve and needs 18 months to 3 years of doxy.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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Thanks for the information desertwind. My doctor wants me on doxy and plaq also. Do you have to take doxy for 18 months? How far into it are you? Do you remember symptoms of Q Fever? Anymore info would be much appreciated:)
Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
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desertwind
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Well my LLMD told me to go off of Doxy after 4 months. I am still not sure if mine is chronic or acute but it look like it is chronic at this point.
But my recent blood work showed my titers have doubled again BUT he does not think I need go back on Doxy.
Makes no sense to me...I am putting myself back on Doxy and getting a second opinion as chronic Q-fever is nothing to ignore. Up to 3 years for chronic cases so 4 months does not sit well with me.
I may have gotten exposure from something other then a tick bite.
As far as the symptoms it is hard to say when it came on and what symptoms were what. Headache, meningitis, nightsweats, heart palp.'s, some shortness of breath, fatigue. Again I do not know what is/was Q-fever and other TBI's.
How about you??
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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The symptoms are similar to lyme, so I don't know either. I showed Igg's so I guess that means it's not active but I was exposed in the past. Still, it might be chronic. Great...one more thing:( I grew up on a farm and drank raw cow's milk, and as you know, that can be a source of contamination.
Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
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desertwind
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Yeah, this is a hard one because the symptoms over lap AND as you said you can get it from sources other then ticks.
I am trying to do more research on transmission because... I have a bovine pericardium patch in the back of my head/brain from surgery a couple of years ago. Right after I became pretty ill. Who knows. I know viruses and bacteria has been killed prior to implanting the bovine patch into my head but my understanding is that Q-fever very a very hardy bacteria.
My IgM Phase I is 1:256. It was down to 1:125 but went back up. My Phase II is negative. So I do not know if I am in the "convelecant" mode or still causing problems. This is why I am getting a second opinion on the Q-Fever and understanding the results.
I did not grow up on a farm but I live very close to numerous farms; cattle, sheep etc.
If you get any more info please pass it along.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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Do you think the patch could have been responsible? Interestingly, I had surgery on the nerves in my brain before I became really ill also. I have a titanium plate covering the hole in my skull.
Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
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desertwind
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Okay..weird...My Neurosurgeon wants me to get a Titanium Plate where the hole in my skull is at. I call it my "soft spot" and is where I was decompressed.
I am concerned about getting another foriegn material in my body - especailly now.
HAve you been tested for titanium allergy? I know they are very rare but could happen? Were you on steriods after your surgery? I was on 4 months..
I am consulting with someone about the patch and also got the lot number on it. I would hate to think it is the source of my infection.
Did you know you had lyme when you had your surgery?
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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Was your surgery an MVD for trigeminal neuralgia? Mine was...but no compression was found because it was undiagnosed lyme disease!!! I was tested for titanium allergy and tested negative. I was on steroids for a short time before surgery but not after. Who knows what they were pumping in my body during surgery though. After surgery SEVERE anxiety set in. This was two summers ago. I was diagnosed with lyme this past spring after all kinds of illnesses.
Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
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I also was never the same after surgery. Prior to surgery I had terrible shooting pain in right side of face, jaw, teeth and ear but I wasn't experiencing flu-like illness. After surgery flu-like illness pretty much constant.
Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
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desertwind
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Your story sounds almost identical to mine. I have not been the same since either and my two year anniversary of the surgery is next week.
I have Chiari Malformation and underwent a PFD (posterior fossa decompression/c-1 lamenectomy along with a duraplasty). Made all my "chiari" symptoms worse.
I had a history of lyme and was "cleared" by my at the time LLMD. My life changed so much since the surgery. Along with the pain I still have, I do get alot of flu-like illness symptoms.
To make matter worse, right after the surgery I developed severe meningitis hence the 4 months of steroids. I was told I was having a "reaction" to the bovine patch but not a rejection.
I found out a few months ago I have a beef allergy so I wonder about that too. Beef allergy and having a bovine patch in me. No one seems to know anything about that and just rolls their eyes at me.
Are you treating for Q-fever right now and how often will you get re-tested?
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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I'm sorry for your road of agony...I can sure relate. I only had a skin test to see if I was allergic to titanium. I wish I'd never had that surgery!
I'm going to switch back to doxy and stay on my plaquenil to treat for Q Fever for at least several months. He's going to retest and see how I do and take it from there from what I understood. Does that sound like what your doc is doing with you?
I know another person with Q. He was on doxy for seven months but his numbers didn't go down. His LLMD is now treating him for toxo and not the Q. So, if this can truly be a life-threatening illness and can take up to three yrs. of doxy to cure then why would your doc and this other guy's doc not keep with the doxy?
Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
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desertwind
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I say that all the time about my surgery.. I just "celebrated" my 2 year anniversary. I am sorry you had to go through un-necessary surgery as well.
The muscles that use to be attached to the bone that was removed is now attached to my dura and causes bad dura headaches and deep pulling sensation inside my head. My neurosurgeon wants to put a titanium plate back there to give the muscle something other then dura to attach to. Everytime I turn my head I can feel my dura getting pulled and can cause a massive headache. The titanium plate is sounding pretty good right about now!
I would be curious to hear how your titanium plate functions for you.
Anyway..My LLMD is taking a sit back, wait and see approach - I am not comfortable with that.
I am actually going to see a doctor who specializes in Q-Fever because this is not something I want to mess with.
Given the fact that it can be ransmitted in other ways then TBI's, I am not comefortable just waiting to see if my numbers go up. I want a specialist to take a look at the testing, my titers and treatment protocol for it. Plus I want to know if it was possilby transmitted via my patch and if that is an ongoing source of infection.
I do not want to leave any of this up to chance -not when our heart function is at risk. Just my opinion.
Interesting that no one else has replied to this topic - makes me think it is not all that common with regards to TBI's. I will let you know what I find out from my consultation this week.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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desertwind
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Is your daughter being treated for Q right now?
Thanks for posting the article. I hope to get more info. tomorrow...
I am hesitiant to get the plate put in with fear that I could be worse off then I am now. As you know there are no gaurentees and the thought of being cut open again - well I don't know.
My current LLMD is the only one who ever tested me for Q- Fever. After I tested positive I had my dog tested as I was told it can come from dogs as well. She was negative. We do live very close to alot of farms so inhalation is a possibility.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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In which lab your tests were done.
Posts: 482 | From Nebraska | Registered: Feb 2010
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desertwind
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I tested positive through Quest.
I got another opinion on my Q-Fever.
She was very concerned that no one (my LLMD or Neurosurgeon) ever considered my bovine pericardium patch to be the source of transmission for me, since my Q-Fever symptoms came on after my brain surgery.
According to her if titers continue to rise then meds should NOT be stopped - can lead to endocarditis. Chronic cases need to be treated for 1.5 to 3 years with Doxy or Doxy/Plaq. combo. You should see titers continue to drop during treatment.
I am very concerned that I was taken off doxy while still positive and no doctor would even consider my bovine patch to be an issue.
If the cow that was used for medical purposes was infected then I am not the only one who might have a problem.
This whole thing just confuses me....
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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My Q Fever showed up through LabCorp tests.
Desertwind, are you going back on the doxy and plaq? That's what I'm on now.
What do you mean about the cow?
Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
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desertwind
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Yes, I am going back on Doxy/Plaq. Getting my ticker checked out as well. Did your LLMD say how long you would be on Doxy/Plaq?
The patch in my dura came from a bovine - cow source. It came from the heart lining of a newborn calf.
The doctor said the concern is that if the calf was infected with Q-Fever it is possible other parts of the calf that was used for medical purposes could also be infected.
She is doing a formal investigation on it since my symptoms started after my surgery and the patch can transmit the bacteria.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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Would minocycline/plaquenil treat it? JUst curious if it it has to be doxy.
Posts: 618 | From NC | Registered: Oct 2009
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desertwind
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Hum..Not sure but I thought I recall reading somewhere that you could use that combo but was not typically used due to side effects of Mino.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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How did the heart testing come out desertwind? My doctor isn't sure how long he will keep me on doxy and plaq. yet. Have you found out anymore information?
Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
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poppy
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Desertwind, here is an article that links tick bites to meat allergy:
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