Hi. I was diagnosed with Q Fever over a year ago. I work for the BSA ( Boy Scouts of America ) and had a tick bite back in May of 2006. Long story short, after months of testing ( and wondering if I was losing my mind ), they found it was Q Fever. I'm still running a fever ( one year and 19 days as of today ). I now have spinal meningitis along with the Q Fever.
I'm seeing two different infectious specialists - one in Chattanooga, and one at Vanderbilt in Nashville. I have also been seeing a neurologist because of the severe headaches and have now been experiencing a loss of sensation on the right side of my body.
No one seems to know much about this disease. I truly believe that my research has been as much for me as it has been for my doctors.
I guess I want to know if anyone has found a doctor that is truly knowledgeable about this disease, how long can it last,.....all the usual questions.
I was on Cipro ( because I'm allergic to Doxy and Rifampin ) for almost 7 months when they found the meningitis. So, now I'm off the meds to see if the meningitis will clear up.....
Sorry to whine - I think I'm just about at wit's end with this stuff. I truly don't see it getting any better.
Thanks guys for listening.
Hello Mollymac,
I am sorry to hear you are not feeling well. I have tested positive for chronic Qfever antibodies as well. I had a terrible, terrible spell of fever/mono'sh type symptoms about 16 months ago now. I felt just absolutely horrible. The doctors had no idea what was going on and I was given antibiotics, thankfully during that time. And, Levoquin actually made me feel a little bit better and knocked out my fever. But, I had and still have lingering issues. Went to doctors continually for another 16 months to get diagnosed about six months ago with the antibodies for Qfever. Then, I finally get diagnosed last month with Lyme as well. My antibodies for Qfever, when I was first tested were very, very low. Infectious Disease doc said that it looked like I cured myself (I believe now that is was the Levoquin given to me at the right time that did it).
Anyway, as a result of all of this, I have Fibromyalgia, Encephilitis of the brain, chronic fatigue, SVT heart arrythmia, and possibly sarcoidosis.
I don't have a fever. Nor have I had one since my original bad sickness.
I am currently on Minocycline and Zithromax. I too cannot take doxy, I had a very bad reaction to that. I am also on Plaquenil because I also have gone autoimmune from the infection.
There are about 4 or 5 other people on this board diagnosed with chronic Q fever.
I was seeing an infectious disease specialist for my Q fever. I had a PCR done on my blood for Qfever that came back negative and a PCR done on tissue removed via biopsy that also came back negative. This is was prompted me to see a Lyme Literate Doctor who diagnosed me with Lyme. She believes that I got Qfever and Lyme from the same tick bite. And, I believe she is correct.
You are right in that there seems to be no real experts here in the US. The experts are in Australia and France.
My infectious disease doctor is very famous. And, when I saw him last, he said that he treated a Saudi Arabian prince who had a fever for over a year. This guy came to see him and my infectious disease doctor diagnosed him with Qfever. Doc says they have alot of Qfever in Saudi Arabia from the camels.
Anyway, if you are willing to travel, my doc is in NJ. He told me that he finds about 2 cases/month of Qfever here. Let me know and I will give you his name.
Stay well.
Hi. A friend found this board for me. I was diagnosed with Q Fever in August of 2006, although I had been sick since May of 06. I had a tick bite in a rural county - I work for the BSA ( Boy Scouts of America ), and was doing some work at our summer camp when I got the tick.
Like most of you have posted, I had the extreme fever ( still do ), headaches, myalgia, nausea, swelling in the face around the eyes, rash, and numerous other aches and pains. I'm still dealing with most of the same symptoms still. I wasn't diagnosed for a little over 3 months, and was then put on a combo of Doxy and Rifampin - which it turned out, I'm allergic to.
They switched the meds to Cipro - 500 mg. twice a day - and I stayed on that for about 7 months until they found that the Cipro had caused spinal meningitis, so now, along with the fever and other things, I now have a sore throat, earache, sore neck and back too! yippee. I think the one thing that really gets me the worst is the extreme fatigue. I've begun to think that this may never get better. I get up in the mornings, usually with little to no fever, and within an hour, I'm right back up to anywhere from 100-102. I'm forced to lay down and rest every two - three hours to get any relief. Once they diagnosed the spinal meningitis, they took me off of the Cipro to see if the SM would clear up on it's own. So far, it hasn't gotten any better. Had to undergo a spinal tap almost two weeks ago, and that was NOT any fun.
I have two infectious specialists, and a neurologist working on my case, and the one thing they all seem to have in common is that prior to me, none of them had ever dealt with a real live case of this. Granted, they are all becoming "experts" on the subject because I am constantly searching out information to bring to them. I don't understand why our FDA won't approve the vaccine for Q Fever as it is allowed in most other countries. Perhaps once this becomes more widespread, they will get up off their duffs and do something about this.
I've run across some info. that you may already know, but in case not, please allow me to share. Chronic Q Fever can produce false negatives in the blood cultures - seems the little buggers like to hide out dormant in our bone marrow only to reactivate at a later date. Some of the other side issues Q Fever can cause are gall bladder trouble ( am beginning to deal with that now ), liver problems, and chronic fatigue.
I'm curious, how long have you guys been running the fever? I'm currently at one year, 20 days consecutive.
Thanks for having this forum. I have spent the last year thinking I was alone with this. It just helps knowing I'm not.
I'm not sure if my first post actually posted, so if this is a duplicate in some respects, pleace accept my apologies!!
First some one asked about fever, I haven't had one for the three years i had chronic q fever before i was treated, only while i was on antibiotics i get really sick a couple of times and got a high fever.
Also i keep seeing people say how hard and toxic it is to test people for chronic q fever? I'm confused? Where i live you can get tested for it anywere, also the test doesn't cost anymore than say a thyroid test for me- SO if they had to wear suites and it's so contagious why don't they charge me more for it.
Also i donated blood to the red cross!!!! Before i was told i have chronic q fever, i wrote them, they didn't have any problem with that and said i couldn't infect other people that way, and they still send me stuff in the mail to donate more. Also it isn't in my blood, it doen't just flow around in my blood, the only way my ID doctor thinks i have it is because i have high antibodies, he knows there no way to check blood for the bacteria it isn't there.
When they do your blood tests for Q Fever, how long does it take to come back?
Mine always takes well over a week - close to two weeks to come back because they have to send it to a special lab. We have a teaching hospital here, as well as three other major hospitals, and none of them will do the test here.....
Also i keep seeing people say how hard and toxic it is to test people for chronic q fever? I'm confused? Where i live you can get tested for it anywere, also the test doesn't cost anymore than say a thyroid test for me- SO if they had to wear suites and it's so contagious why don't they charge me more for it.
There's testing and there's testing.
1. Antibody testing. I believe this is the most common kind of testing--IgG, IgM ... essentially immunoglobulin. They're looking for the components circulating in your blood that are designed to latch onto Q fever bacteria and flag them for white blood cells to come eat them. Circulating antibodies indicate the disease at least was there at some point.
2. Culture testing. This is the moon suit job. You take some blood or tissue and try to grow bacteria in a petri dish from the sample you got. Cheap (if the bacteria you've got doesn't need the moon suits and will grow on a culture medium in a petri dish--some won't) and accurate. If it's Q fever, you don't want to hang around a petri dish you even suspect may be full of it without a moon suit.
3. DNA testing. I believe this is known as PCR usually, but I think there are also a couple of even newer techniques with different acronyms and varying sensitivities. Remember there was a lot of discussion about how this all worked in the OJ trial ... and you can start with an extremely small sample of DNA and use a technique to make more and more of that DNA until you get enough DNA to obtain a genetic "fingerprint" and determine whether a given bacteria has been or is now present or absent. Accurate but not cheap.
4. Soon the Greenechip will be more available. Runs about $130 and you can test blood, urine, stool, mucus or what-have-you on it. And it has 30,000 bits of different infectious agents on its surface. Whatever lights up ... is in the sample. So you're testing for 30,000 different bugs at once. It's going to take all the fun out of practicing diagnostic medicine...
Last edited by Sisyphus3; 06-10-2007 at 05:16 PM.
Reason: add mention of the greenechip ... again
OK, I have a question then. I've had the two "easy" tests - the one for antibodies and the cultures. I haven't had the other two.... I hear that Q Fever in the chronic stage is prone to false negaives after the initial acute phase is over. What do you know about this?
I don't know about the false negatives. But I did notice a few things in your earlier post ... since there's a tick bite, I hope that there were tests for other tick-borne diseases. A tick could carry more than one.
Also, coffee drinking can help head off galbladder problems, as can an occasional apple juice/epsom salt/grapefruit juice/olive oil flush.
I've seen a number of reports regarding a post-Q fever fatigue syndrome that sets in after a period of weeks or months. I would consider doing what any chronic fatigue/fibromyalgia sufferer can do ... working Dr. Teitelbaum's list from top to bottom in an empirical approach to find something that brings relief.
( My doctor checked for over 30 tick related diseases before finally testing for Q Fever, but it wouldn't hurt to run more tests as the exhaustion is more than I can describe. )
Thanks!
Last edited by moderator2; 06-13-2007 at 04:51 AM.
Reason: please do not ask members to violate the posting policy
Even though you have been tested for Lyme Disease these test are not accurate...Doctors truly need to go on your clinical symptoms...If your docor refuses to do so ..then please get to a doctor such as a LYME LITERATE MEDICAL DOCTOR>...Lyme disease is the 2nd fast growing disease that there is. It is all over the world. There are also co-infections that you need to be tested for. And even these test are not accurate..giving false negatives...
I didn'tknow this years ago...had test after test ran. I knew when I got sick. And I became sicker from being mis-diagnosed.
I read a little about q fever...poossibly this is your problem Does the doctor have you on antibiotics for it? Or if you were did it help any?
You might want to post on the lyme board and ask for a LLMD in your area to go to...This is not a disease you want to leave untreated.
I went back to the doc. thi past week. My doctor said that Q Fever ( when in the chronic phase, as mine is ), is a hard one to test for as once the antibodies reach a certain level, they will read as negative for the bacterium. How strange. She now thinks that I've developed an autoimmune problem from the chronic Q. Am going tomorrow for lots more bloodwork, as they couldn't do it there because they said I was severely dehydrated - not sure how that is possible as I drink up to a 1/2 gallon of water/fruit juices per day.....
Last edited by mollymac; 06-17-2007 at 04:25 AM.
Reason: misspelling
Mollymac,
If you tested positive for Qfever and your antibody numbers were high and you have had a fever for a long period of time, you need to do the following:
Switch to another infectious disease doctor who has treated many cases of Qfever. I am not sure if anyone here has been treated for Qfever using Cipro.
Your reaction to Doxy just might be a "Herx" (Herxheimer reaction - severe die-off of bacteria). Ask the more experienced infectious disease doctor if he can start you off on Doxy in lower doses to see if you can tolerate it? Just an idea.
Lastly, I also had a severe reaction to doxy, which I now totally believe was a herxheimer - I was hallucinating and everything. My infectious disease doctor is now recommending Levoquin for me. And, it just so happens, that when I had my fever - about 3 or 4 weeks into the fever, I had a doctor prescribe Levoquin - this doctor had no idea what she was treating - but I have to tell you that it knocked out my fever. You might want to try that as well.
My infectious disease doctor treated a prince from Saudi Arabia who had a fever for over a year and found him to have Qfever too. So, your case is treatable. You just need to find the right doctor and the right antibiotics. I believe that once you get that right antibiotic, I don't think your fever will last much longer.
Best wishes to you.
Last edited by october885; 06-18-2007 at 03:50 PM.
Thanks, I'll bring that up at the next visit next week.
My doctor thinks that I have developed SLE Lupus from the chronic infection. I've done a little research into SLE, and unfortunately, all of the symptoms fit what I'm dealing with.....although, most of the symptoms are similar to chronic Q Fever also......
As for the Cipro for Chronic Q Fever, that was the suggestion from the CDC. I have been in contact with the leading Q Fever researcher there, and he said that it had been used with fairly good results. I guess I wasn't one of the good results... LOL.
Not sure why they haven't tried the Leviquin yet. I am allergic to so many antibiotics, that that may be one of the reasons. Will have to ask again.
Thank you for the reminder.
Shalom,
Beth
Mollymac,
SLE Lupus is not a surprise. I believe I have about 4 autoimmune diseases at this point in time, Sjogren's, Sarcoidosis, Lupus, Celiac. And, unfortunately, I have the added bonus of getting chronic fatigue, fibromyalgia, encephalitis and a heart arrythmia from it as well.
The good news is is that I was put on Plaquenil about 3 or 4 months ago and my autouimmune issues are diminishing. The antibiotics are helping with the lyme/q infection. So, I believe and hope I am on the right track. As you will be soon as well.
PS, with all the reading I have done, you have to get your immune system back in shape in order to fight Q or lyme. The Plaquenil will help you with that. Also, a very good LLMD (Lyme Literate Doctor) will get you going in that direction as well. I have read ALOT about Q and Plaquenil is recommended alot with antibiotics as a course of treatment.
Best wishes.
Thanks for the info. I'm so sorry you're dealing with this too. Do you find that sunlight or flourescent lighting makes it worse? If I'm in either, I get this beautiful bright red rash across my cheeks and nose, and occassionally on my chest, neck, arms..... The longer I'm in the situation, the worse it gets. ....to the point of dizziness, headache, shaky and achy ( that's me - the ache and shake girl! LOL )
Shalom,
Beth
Yes,
The light thing was a major issue for me. Your vitamin D levels are really high right now. Plaquenil will help with this.
I still get this to a lesser degree when driving in very bright sunlight - but not nearly as bad as before.
Once you D levels go down, you will start feeling better.
And, yes, flourescents were bothering me as well.
If you visit the Marshall Protocol site, you will see information there for NOIR glasses. I wear them when watching TV and always outside. They will help alot too.
Best wishes.
Hello everyone. I hope everything is looking better for you all.
I have almost finished building a house, I am surprised i can still do it. And i'm very glad i'm not on antibiotics because the sun would tear me up.
Anyways i will be done this month and i'm going to go to a new ID doctor and get my 16th opinion. I also have to get my heart checked out again. I almost don't want to go, but i will one more time, more so for my familey because i don't want them to think i stoped seeing any doctors, cause if i died they would think thats what i wanted if i wasn't seeking medical care. I'm kinda scared, and things arn't getting any easer.
Q Fever took All my thyroid function, Five years of my life, All of my social life. My Last job, all of my money, and i sold everything i own worth money. Enlarged my heart, made three of my valves leak in my heart. And i do belive my life in time. Sorry i just wanted to vent a little. I hope everyone has a good day, and good luck.
Quick Checkin:
Hope all is going well.
I am currently under a lyme antibiotic program. My LLMD is also checking my qfever antibody levels each time I see her to see if they go up now that my autoimmune is modulated somewhat. I'll keep you posted. Last appointment, LLMD told me that I was making new antibodies - a good thing. She has me on Minocycline and Biaxin.
Still a mystery as to whether I have Qfever or not or if I was at one time exposed to it - since antibody levels are so low (supposedly under 200 is cured). Please keep me informed as to what each of your antibody levels are now that you have been through your antibiotics. I wonder if we will always show antibodies.
I hope everyone had a great summer.
