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Lyme / Q fever
My ID doc said no lyme but postitive titers for Q fever. ID doc advised me to do a sleep study. I went to a LLMD who said western blot 39 ++ and 41++++ was postive for lyme. Anyone test positive with co-infection of Q fever. It can also be from ticks. Are there any real percentage numbers for cure rate or getting over Lyme ?
Q fever and Lyme are both tick borne diseases. You can get both from the same tick bite. Q fever is not well understood, but is recognized as difficult to treat, requiring long term antibiotics of 1-2 years for chronic cases.
Lyme Disease, I'm sure you've seen from your research, is very controversial. The entrenched dogma in the medical field is that it's not that bad and a few weeks of oral doxycycline takes care of it. If a patient is still stick, well, then they must have some other mysterious condition unknown to science that we can't treat. (And here's a pile of symptom relieving pharmaceuticals! Good luck!) It's really appalling how many sick people they abandon because they don't want to admit they've been wrong about Lyme for 25 years!
Your doctor should be willing to treat you appropriately for the Q fever. There's ignorance about it, but not much controversy.
But since you tested negative for Lyme, you'll need to see a good LLMD. You need to get tested at IGeneX, which shows Lyme antibodies that "standard" testing ignores. If you do have it, only a LLMD will give you proper treatment for it. ID docs who treat Lyme with long term antibiotics are about as common as pink unicorns. The more you start and stop insufficient oral antibiotics, the harder it can be to get rid of it completely.
Lyme Disease, I'm sure you've seen from your research, is very controversial. The entrenched dogma in the medical field is that it's not that bad and a few weeks of oral doxycycline takes care of it. If a patient is still stick, well, then they must have some other mysterious condition unknown to science that we can't treat. (And here's a pile of symptom relieving pharmaceuticals! Good luck!) It's really appalling how many sick people they abandon because they don't want to admit they've been wrong about Lyme for 25 years!
Your doctor should be willing to treat you appropriately for the Q fever. There's ignorance about it, but not much controversy.
But since you tested negative for Lyme, you'll need to see a good LLMD. You need to get tested at IGeneX, which shows Lyme antibodies that "standard" testing ignores. If you do have it, only a LLMD will give you proper treatment for it. ID docs who treat Lyme with long term antibiotics are about as common as pink unicorns. The more you start and stop insufficient oral antibiotics, the harder it can be to get rid of it completely.
Hello, I am new to the community. I am suffering from all sorts of symptoms and have been since June 2013. My dr seems to think I have Lyme disease and began treatment since Aug 2013 for Lyme disease first treatment was 3 months and I began to feel better. The fatigue never left though :((. About amonth later began having more symptoms some similar as before and new ones(very debilitating ones). I was put back on antibiotics for 2 months with dbl the dosage as first treatment. Did not feel better some symptoms were not as severe but still present. I have been off treatment now for almost 2weeks and not better I have been seen by an infectious disease dr and had a whole battery of tests done. I had a follow up appt and tested pos for Q fever. I am not convinced this is not Lyme. I have to undergo further testing and possibly a spinal tap? My Lyme test came back neg but apparently this is common as I live in Canada and our testing for Lyme is not as sensitive as US testing. Unfamiliar with Qfever, I have done a lot of reading on Lyme and all my symptoms go along with Lyme? I just want to get better. Starting to forget what my normal is. Any thoughts or suggestions would be appreciated
Sorry to hear about your tick borne disease struggles! While Q fever is not very common, I have the sneaking suspicion that it is a lot more common than we realize. And having multiple family members with Lyme is certainly common. I wonder if you got Lyme Disease later, or at the same time as the Q fever. If you don't mind sharing, how were you treated for the Q fever?
I encourage you to go to a good LLMD, if you aren't already. Long term Lyme requires more sophisticated treatment than just Doxy.
If your daughter still has ongoing symptoms after her four weeks of Rocephin, I'd encourage her also to go to a LLMD. Some estimates by ILADS docs say that about half of patients treated with the standard 2-4 weeks of Rocephin are still infected afterwards. They believe that ongoing symptoms represent ongoing infection, not a mysterious autoimmune condition that the Lyme deniers have labeled "post treatment Lyme Disease syndrome," or "post Lyme" for short.
I encourage you to go to a good LLMD, if you aren't already. Long term Lyme requires more sophisticated treatment than just Doxy.
If your daughter still has ongoing symptoms after her four weeks of Rocephin, I'd encourage her also to go to a LLMD. Some estimates by ILADS docs say that about half of patients treated with the standard 2-4 weeks of Rocephin are still infected afterwards. They believe that ongoing symptoms represent ongoing infection, not a mysterious autoimmune condition that the Lyme deniers have labeled "post treatment Lyme Disease syndrome," or "post Lyme" for short.
You and your family have really been through the mill! Good for you for pursuing solid answers and not giving up.
Depending on how long you were infected and what co-infections you may have had, 90 days of doxy may not be adequate. If you continue to feel not quite right, you might look for a second opinion just to be certain.
Ditto re your daughter's situation. And I'm sadly not so sure you are the rare family ... Lyme is quite the active spreader of misery these days. :)
Let us know how you all are doing, okay? Take care --
Depending on how long you were infected and what co-infections you may have had, 90 days of doxy may not be adequate. If you continue to feel not quite right, you might look for a second opinion just to be certain.
Ditto re your daughter's situation. And I'm sadly not so sure you are the rare family ... Lyme is quite the active spreader of misery these days. :)
Let us know how you all are doing, okay? Take care --
I was diagnosed with Q-Fever after 3 years of being very sick. It took a trip to a Belgium doctor to finally get diagnosed. And confirmed here in States and by CDC. No one understands this disease in USA they treat for acute.
Then 2 years later sick again, we thought it was back but I tested posiive for Lyme. Back on Doxy for almost 90 days. I have symptoms and/or permanent damage still but if I work out hard it keeps it in check-go figure. (Pilates and running)
Then my daugher started experiencing some lyme like symptoms and yes she has it too. So she is just finishing up 30 days of Intraveneous antibiotics for CNS Lyme. So go figure we are the rare family.
Then 2 years later sick again, we thought it was back but I tested posiive for Lyme. Back on Doxy for almost 90 days. I have symptoms and/or permanent damage still but if I work out hard it keeps it in check-go figure. (Pilates and running)
Then my daugher started experiencing some lyme like symptoms and yes she has it too. So she is just finishing up 30 days of Intraveneous antibiotics for CNS Lyme. So go figure we are the rare family.
This is progress -- good for you for pursuing the possibilities. Let us know how your appointment goes, okay? (And remember to take your past test results with you -- historical perspective is useful to a doc. ... but keep your own set of test results at home. I let my docs copy things I have in my binder but always am sure to get them back before I leave. I figure I paid for the tests, I should have copies!)
Take care --
Take care --
I am going to an LLMD who is checking for co-infections. I get the results back in two weeks.
I got a call from the Health Department asking me where I could of got the Q fever, I told them I wish I knew. They must of be notified by the lab. They say Q can be made to be used as a germ warfare agent.
Since the LLMD said I have lyme I can't be sure where the symptoms are coming from and you treat both of them differently.
I have been on anti-biotics for about two months and the one thing I notice is no more chest pain( Q can produce heart problems) That is a great thing.
In other countries it is more common they have a vaccine for Q.
I got a call from the Health Department asking me where I could of got the Q fever, I told them I wish I knew. They must of be notified by the lab. They say Q can be made to be used as a germ warfare agent.
Since the LLMD said I have lyme I can't be sure where the symptoms are coming from and you treat both of them differently.
I have been on anti-biotics for about two months and the one thing I notice is no more chest pain( Q can produce heart problems) That is a great thing.
In other countries it is more common they have a vaccine for Q.
Here's a link to Columbia University's page on Q Fever as a tick borne disease: http://columbia-lyme.org/patients/tbd_qfever.html
Columbia says a chronic case should be treated for four years, possibly longer for people with heart problems.
And here's a link to the CDC website on Q Fever
http://www.cdc.gov/qfever/symptoms/index.html
The CDC says that a chronic case should be treated for 18 months.
This is fascinating to me, as Infectious Disease doctors will not treat a Lyme patient with doxycycline for more than a month. They say long term antibiotics are dangerous and risky.
The other interesting thing on the CDC website is where they say:
"Coxiella burnetii has the ability to persist for long periods of time in the host after infection. Although the majority of people with acute Q fever recover completely, a post-Q fever fatigue syndrome has been reported to occur in 10-25% of some acute patients. This syndrome is characterized by constant or recurring fatigue, night sweats, severe headaches, photophobia (eye sensitivity to light), pain in muscles and joints, mood changes, and difficulty sleeping. "
These symptoms of post-Q fever syndrome sound exactly like chronic Lyme Disease and possibly even Babesiosis! Maybe these patients had Q fever along with Lyme and/or Babesia, and the Lyme went undiagnosed and the oral doxycycline was insuficient to kill all of it.
If I were you, I'd go to an LLMD who knows how to recognize other tick borne diseases as well.
Columbia says a chronic case should be treated for four years, possibly longer for people with heart problems.
And here's a link to the CDC website on Q Fever
http://www.cdc.gov/qfever/symptoms/index.html
The CDC says that a chronic case should be treated for 18 months.
This is fascinating to me, as Infectious Disease doctors will not treat a Lyme patient with doxycycline for more than a month. They say long term antibiotics are dangerous and risky.
The other interesting thing on the CDC website is where they say:
"Coxiella burnetii has the ability to persist for long periods of time in the host after infection. Although the majority of people with acute Q fever recover completely, a post-Q fever fatigue syndrome has been reported to occur in 10-25% of some acute patients. This syndrome is characterized by constant or recurring fatigue, night sweats, severe headaches, photophobia (eye sensitivity to light), pain in muscles and joints, mood changes, and difficulty sleeping. "
These symptoms of post-Q fever syndrome sound exactly like chronic Lyme Disease and possibly even Babesiosis! Maybe these patients had Q fever along with Lyme and/or Babesia, and the Lyme went undiagnosed and the oral doxycycline was insuficient to kill all of it.
If I were you, I'd go to an LLMD who knows how to recognize other tick borne diseases as well.
"My ID doc said no lyme but postitive titers for Q fever."
ID docs are known to be great Lyme deniers all too often. Wish I could say I'm surprised, but it seems they will bend over backward not to see the Lyme in front of them. That said, perhaps you do have Q fever too. I don't recall anyone mentioning it here on this site in the several years I've been lurking around, but if Lyme has taught me one thing, it's not to underestimate Mother Nature.
Re Q fever, wiki says:
"Q fever is a disease caused by infection with Coxiella burnetii,[1] a bacterium that affects humans and other animals. This organism is uncommon, but may be found in cattle, sheep, goats and other domestic mammals, including cats and dogs. The infection results from inhalation of a spore-like small cell variant, and from contact with the milk, urine, feces, vaginal mucus, or semen of infected animals.
===> "Rarely, the disease is tick borne.[2] The incubation period is 9–40 days. A human being can be infected by a single bacterium.[3] The bacterium is an obligate intracellular pathogen. ... Treatment of the acute Q fever with antibiotics is very effective[citation needed] and should take place in consultation with an infectious diseases specialist.[citation needed] Commonly used are doxycycline, tetracycline, chloramphenicol, ciprofloxacin, ofloxacin, and hydroxychloroquine. The chronic form is more difficult to treat and can require up to four years of treatment with doxycycline and quinolones or doxycycline with hydroxychloroquine."
What did the LLMD say about Q fever? Does s/he confirm that diagnosis?
"Are there any real percentage numbers for cure rate or getting over Lyme ?"
Excellent question. The Lyme stats are all unreliable in my view, including how widespread it is or isn't geographically, what percentage of ticks carry it, how many kinds of ticks carry it, whether mosquitoes etc. can carry it, etc.
As the saying goes, garbage in, garbage out -- and if we don't have a grip on the extent of the epidemic, and the tests aren't terribly reliable to give stats on infection rates, and the treatment is iffy sometimes, then how is it possible to come up with good solid numbers on a cure rate? Sadly, we can't, in my personal way of thinking.
Lyme is a slippery devil, BUT it is imho worth doing battle over. I suspect many of us may carry low-grade, subclinical cases of Lyme for years and years, and it's only upon a re-infection or another major stressor on the body that Lyme hits full force. Whether one can be fully and perpetually cured of Lyme, I do not know, but I believe that if not fully cured, we can achieve a functional cure ... so that we walk, talk and live largely as we did before Lyme arrived.
I was in terrible shape before diagnosis and treatment, and yet here I am, typing away on this site at 2 am, getting ready to go to bed after a long day working. I'd call that a functional cure, or even a full cure, but I don't trust Lyme. It be a sneaky one. If need be, I will do battle with Lyme again, but so far so good.
I don't know if my approach is of any comfort to you, but the effort to be treated was absolutely worthwhile for me and for others, and I would encourage you to pursue treatment as well.
ID docs are known to be great Lyme deniers all too often. Wish I could say I'm surprised, but it seems they will bend over backward not to see the Lyme in front of them. That said, perhaps you do have Q fever too. I don't recall anyone mentioning it here on this site in the several years I've been lurking around, but if Lyme has taught me one thing, it's not to underestimate Mother Nature.
Re Q fever, wiki says:
"Q fever is a disease caused by infection with Coxiella burnetii,[1] a bacterium that affects humans and other animals. This organism is uncommon, but may be found in cattle, sheep, goats and other domestic mammals, including cats and dogs. The infection results from inhalation of a spore-like small cell variant, and from contact with the milk, urine, feces, vaginal mucus, or semen of infected animals.
===> "Rarely, the disease is tick borne.[2] The incubation period is 9–40 days. A human being can be infected by a single bacterium.[3] The bacterium is an obligate intracellular pathogen. ... Treatment of the acute Q fever with antibiotics is very effective[citation needed] and should take place in consultation with an infectious diseases specialist.[citation needed] Commonly used are doxycycline, tetracycline, chloramphenicol, ciprofloxacin, ofloxacin, and hydroxychloroquine. The chronic form is more difficult to treat and can require up to four years of treatment with doxycycline and quinolones or doxycycline with hydroxychloroquine."
What did the LLMD say about Q fever? Does s/he confirm that diagnosis?
"Are there any real percentage numbers for cure rate or getting over Lyme ?"
Excellent question. The Lyme stats are all unreliable in my view, including how widespread it is or isn't geographically, what percentage of ticks carry it, how many kinds of ticks carry it, whether mosquitoes etc. can carry it, etc.
As the saying goes, garbage in, garbage out -- and if we don't have a grip on the extent of the epidemic, and the tests aren't terribly reliable to give stats on infection rates, and the treatment is iffy sometimes, then how is it possible to come up with good solid numbers on a cure rate? Sadly, we can't, in my personal way of thinking.
Lyme is a slippery devil, BUT it is imho worth doing battle over. I suspect many of us may carry low-grade, subclinical cases of Lyme for years and years, and it's only upon a re-infection or another major stressor on the body that Lyme hits full force. Whether one can be fully and perpetually cured of Lyme, I do not know, but I believe that if not fully cured, we can achieve a functional cure ... so that we walk, talk and live largely as we did before Lyme arrived.
I was in terrible shape before diagnosis and treatment, and yet here I am, typing away on this site at 2 am, getting ready to go to bed after a long day working. I'd call that a functional cure, or even a full cure, but I don't trust Lyme. It be a sneaky one. If need be, I will do battle with Lyme again, but so far so good.
I don't know if my approach is of any comfort to you, but the effort to be treated was absolutely worthwhile for me and for others, and I would encourage you to pursue treatment as well.
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