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herx experiences & LD diagnosis question
Hello! I’ve been lurking here for a short while, appreciating the shared information and support. Now, I am jumping in with a couple questions.
I have spent the last 5 years becoming educated on chronic parvovirus B19 because that is what I had been led to believe was wrong with me. Then this past April I found what I thought was a new skin tag behind my knee, which several days later I realized was an engorged tick. (I know, I know, even though at certain ranges my vision isn’t good, I really do know better.) Shortly thereafter I started noticing new symptoms, and even more aggravated usual symptoms, and started looking for an LLMD. Took more than a month to get in, but I did.
Long story short, it appears I was probably infected with Bb along with the parvo, or parvo along with the Bb; it’s also possible the Bb infection was prior to the parvo, and the parvo may have then triggered the Bb infection to escalate to full-blown Lyme disease. I did have a probable tick bite about 3 weeks prior to getting sick and parvo is not a common co-infection but it is an existing co-infection. The Lyme test at that time came back negative (no surprise there) and the parvo tested off the charts positive and active, so nobody looked any further.
First question is one of curiosity: I am wondering how many people here have actually tested positive by CDC standards? In most cases it seems that the longer a person has been infected, the less likely it is that ALL of the CDC-required levels will be met. So I suspect I am one of a horde of people who have Lyme disease, but, according to the CDC, don’t. (I now notice the function to post a poll so maybe I will try that later with this question, but I'd be interested in comments now.)
Regardless of that, my serious question today is about herxing. I have been on a pretty hefty abx regimen for about 6 weeks now, and the pain in my knees, which was excruciating most of the time, has already come down to being merely uncomfortably painful most of the time. It still takes me time to adjust when I stand up, but the pain is comparatively bearable. I am happy to experience some herxing because that is confirming my diagnosis and treatment so far, but I am experiencing short bursts of unusual things (for me). Some I have had occasionally before but never associated them with my condition. Now I guess I know they probably are related. But it would be comforting to know: has anyone else experienced herxing in ways that are not the primary symptoms for you?
Thanks!
I have spent the last 5 years becoming educated on chronic parvovirus B19 because that is what I had been led to believe was wrong with me. Then this past April I found what I thought was a new skin tag behind my knee, which several days later I realized was an engorged tick. (I know, I know, even though at certain ranges my vision isn’t good, I really do know better.) Shortly thereafter I started noticing new symptoms, and even more aggravated usual symptoms, and started looking for an LLMD. Took more than a month to get in, but I did.
Long story short, it appears I was probably infected with Bb along with the parvo, or parvo along with the Bb; it’s also possible the Bb infection was prior to the parvo, and the parvo may have then triggered the Bb infection to escalate to full-blown Lyme disease. I did have a probable tick bite about 3 weeks prior to getting sick and parvo is not a common co-infection but it is an existing co-infection. The Lyme test at that time came back negative (no surprise there) and the parvo tested off the charts positive and active, so nobody looked any further.
First question is one of curiosity: I am wondering how many people here have actually tested positive by CDC standards? In most cases it seems that the longer a person has been infected, the less likely it is that ALL of the CDC-required levels will be met. So I suspect I am one of a horde of people who have Lyme disease, but, according to the CDC, don’t. (I now notice the function to post a poll so maybe I will try that later with this question, but I'd be interested in comments now.)
Regardless of that, my serious question today is about herxing. I have been on a pretty hefty abx regimen for about 6 weeks now, and the pain in my knees, which was excruciating most of the time, has already come down to being merely uncomfortably painful most of the time. It still takes me time to adjust when I stand up, but the pain is comparatively bearable. I am happy to experience some herxing because that is confirming my diagnosis and treatment so far, but I am experiencing short bursts of unusual things (for me). Some I have had occasionally before but never associated them with my condition. Now I guess I know they probably are related. But it would be comforting to know: has anyone else experienced herxing in ways that are not the primary symptoms for you?
Thanks!
Not all infections/ailments can cross the placenta and infect the fetus. Thus not all babies are born with infections (or immunities) from their mothers.
Yeah, I did get slammed with the cos. And I have never seen a tick in my life, not that I've really been looking.
I've kind of wondered if that type of thing can be congenital. I know Lyme can be, probably the other TBIs as well... Wonder if antibodies to parvo, EBV, HHV6, ect can be too.
It takes some hard core illness for me to notice. I could have had parvo symptoms at some point, probably would even notice.
Pregnancy is a stressor. And I've heard it can take a toll on the immune system (as stressors usually do), so that's probably what did it. Still didn't hit me over night, which is good - I was able to adapt pretty well. I'm really sick. But it just feels kind of normal to me, since I went down so slow.
I've kind of wondered if that type of thing can be congenital. I know Lyme can be, probably the other TBIs as well... Wonder if antibodies to parvo, EBV, HHV6, ect can be too.
It takes some hard core illness for me to notice. I could have had parvo symptoms at some point, probably would even notice.
Pregnancy is a stressor. And I've heard it can take a toll on the immune system (as stressors usually do), so that's probably what did it. Still didn't hit me over night, which is good - I was able to adapt pretty well. I'm really sick. But it just feels kind of normal to me, since I went down so slow.
Wow you got triple whammied on the tick-borne diseases. Ouch, I feel for you.
Research shows that well above half the population has been exposed to parvo but most do not remember having it. As children, most of the time it manifests as a couple days lethargy, maybe mild flu symptoms, maybe red cheeks (its other name is Fifth disease and the often used "nickname" is slapped-cheek disease from the reddened cheeks).
Sounds like maybe the stress of pregnancy on your body triggered some of the nasties to progress from co-existence into disease.
Research shows that well above half the population has been exposed to parvo but most do not remember having it. As children, most of the time it manifests as a couple days lethargy, maybe mild flu symptoms, maybe red cheeks (its other name is Fifth disease and the often used "nickname" is slapped-cheek disease from the reddened cheeks).
Sounds like maybe the stress of pregnancy on your body triggered some of the nasties to progress from co-existence into disease.
Actually I don't recall ever having parvo in my life, I'm 32. The test showed past exposure, but so did Bartonalla, Babesia, Mycoplasma, Anaplasma, HHV6, and EBV (don't recall ever having mono either). Lyme is the only thing that showed recent or active infection. I've been sick for quite a while. It was a slow decline since I got prego with my daughter 9 years ago. And I'm still sick, so the testing isn't real reliable from any angle.
You may have hit the nail on the head right there - in the historical past, the technological aspects of medical science were not well developed, and average healers/physicians were perhaps more medical artists than medical scientists. Now, we have swung to the opposite, where technology is much more the driver, certainly in western medical training, anyway, and the artistry may not be entirely lost, but it's certainly not common. Not to say, at all, that technology is bad, just that the whole picture still needs to include some medical artistry.
You're in good company here. :) I venture to guess that many of us have issues at some level with The Medical Establishment. It must be difficult for docs to be a scientific-type person thrown (after years of study) into the messy bits of humanity the art (not the science) of medicine. Some docs are able to accommodate both aspects, but others ... well, they're only human after all. Sigh. :)
Cranky describes me, too, when I read that CDC document on post Lyme disease syndrome. Now I know this is all in my head! (Sarcasm intended!)
I think you are right about immune system weakness, and it's a scary thought that it could be genetic and not just a lapse for other reasons. It seemed logical that re-awakening the immune system by forcing the Lyme bacteria out of hiding would then test positive - thanks for confirming the thought. I realize it's petty, but part of me wants to make the CDC count me and part of me would just as soon put re-test money toward healing.
Until 5+ years ago I was always quite healthy and active. I had minor seasonal allergies until I worked for a year in a very dirty and "sick" building, and developed extreme allergy to dust mites, along with allergy-induced asthma (which manifests as coughing and some wheezing but is not a life threatening condition at this time). Other than the parvo and now the Bb I am not aware that I harbor any nasty or unusual invaders. (for what that's worth!)
Do you know if you had parvo as a child or did you get it as an adult? I got it shortly after my 50th birthday and it was a really bad 6 months, followed by a better, but still really bad, 5 years! What research there is indicates that a measurable percentage of women (and a smaller number of men) who contract parvo after about 40 develop severe chronic conditions. At least unlike Lyme it's documented that the chronic conditions can occur, although there is no treatment for either the virus or the aftereffects (at least not in our medical system). What a nice, minor childhood disease!
Re: herxing, I'm thinking that the pains in unusual places are the exposure and demise of Bb that grouped in places other than my knees and simply did not create the extreme pain there. It gives me some satisfaction to think that, anyway; I hope it's true
Until 5+ years ago I was always quite healthy and active. I had minor seasonal allergies until I worked for a year in a very dirty and "sick" building, and developed extreme allergy to dust mites, along with allergy-induced asthma (which manifests as coughing and some wheezing but is not a life threatening condition at this time). Other than the parvo and now the Bb I am not aware that I harbor any nasty or unusual invaders. (for what that's worth!)
Do you know if you had parvo as a child or did you get it as an adult? I got it shortly after my 50th birthday and it was a really bad 6 months, followed by a better, but still really bad, 5 years! What research there is indicates that a measurable percentage of women (and a smaller number of men) who contract parvo after about 40 develop severe chronic conditions. At least unlike Lyme it's documented that the chronic conditions can occur, although there is no treatment for either the virus or the aftereffects (at least not in our medical system). What a nice, minor childhood disease!
Re: herxing, I'm thinking that the pains in unusual places are the exposure and demise of Bb that grouped in places other than my knees and simply did not create the extreme pain there. It gives me some satisfaction to think that, anyway; I hope it's true
I hear you. Sorry my posts were so gloomy.
The IGeneX PCR test is structured differently from the older, less precise Western blot and ELISA tests, but many docs think the W.blot and ELISA tests are just fine as they are, which make me cranky. Grrrr.
The IGeneX PCR test is structured differently from the older, less precise Western blot and ELISA tests, but many docs think the W.blot and ELISA tests are just fine as they are, which make me cranky. Grrrr.
I've had Lyme for a very long time. I was negative by mainstream testing, western blot and ELISA. It wasn't until I treated for six months and then had an IGenex western blot, that I was CDC positive. I also test positive for parvo. I think all it takes is a little genetic weakness in our immune response genes to make us susceptible to infection. Then that infection makes us more susceptible to others. Some people get the infections, but never get sick.
As far as the herxing goes, that's a good indicator of infection. What other infections may you have that can cause herxing? I'm not sure what all types of organisms can initiate that type of response.
As far as the herxing goes, that's a good indicator of infection. What other infections may you have that can cause herxing? I'm not sure what all types of organisms can initiate that type of response.
I think the issues surrounding Lyme arose not from scientific differences, but from political differences in the broader sense, which differences spread into the scientific realm:
Scientists (including physicians) take the data in hand to create a theory of an ailment, and from the stated aspects of the ailment, treatment is in turn devised. All such approaches are very orderly, following scientific methodology.
The difficulty arises when incomplete data is the basis for conclusions on how to diagnose and treat a newly discovered ailment. This occurred with AIDS several decades ago, when the docs in long white coats got on live TV and stated flatly that if you were not Haitian or gay, you were not at risk for AIDS. At that time, only Haitians and gays had been diagnosed with AIDS, and based on that limited data, the docs made their flat-out statement that was (1) absurd on its face and (2) wrong.
That same erroneous methodology pertains to Lyme now: take a small amount of data and make a conclusion that is applied to everyone, no further inquiry to be made. The bureaucrat docs at CDC are following that same allegedly scientific model used in the early AIDS years, which will stand until disproven -- also as was finally done with AIDS.
The current IGeneX-approach tests are not inadequate, though more advancement is always desirable; it is instead the unaccountable naysayers in government who are the real problem.
ILADS and others are making the case that will finally cause the CDC to change its views, but in the meantime there are many suffering. This is something to remember when wanting to put more power in the hands of a largely unaccountable bureaucracy for the alleged good of all humanity.
Scientists (including physicians) take the data in hand to create a theory of an ailment, and from the stated aspects of the ailment, treatment is in turn devised. All such approaches are very orderly, following scientific methodology.
The difficulty arises when incomplete data is the basis for conclusions on how to diagnose and treat a newly discovered ailment. This occurred with AIDS several decades ago, when the docs in long white coats got on live TV and stated flatly that if you were not Haitian or gay, you were not at risk for AIDS. At that time, only Haitians and gays had been diagnosed with AIDS, and based on that limited data, the docs made their flat-out statement that was (1) absurd on its face and (2) wrong.
That same erroneous methodology pertains to Lyme now: take a small amount of data and make a conclusion that is applied to everyone, no further inquiry to be made. The bureaucrat docs at CDC are following that same allegedly scientific model used in the early AIDS years, which will stand until disproven -- also as was finally done with AIDS.
The current IGeneX-approach tests are not inadequate, though more advancement is always desirable; it is instead the unaccountable naysayers in government who are the real problem.
ILADS and others are making the case that will finally cause the CDC to change its views, but in the meantime there are many suffering. This is something to remember when wanting to put more power in the hands of a largely unaccountable bureaucracy for the alleged good of all humanity.
I don't disagree with your comments on the CDC tests, and I'm really not hung up on them or their results (and just a note that I am definitely not a conspiracy theorist!), but I am still curious about the magnitude of the under-reporting. I understand that the CDC is avoiding over-reporting, and should not be counting questionable infections, but to have the official markers so different from the diagnostic markers... well, I guess that just says we need a better test!
It does concern me (for research funding and public health as much as anything) that our official government position is that Lyme is a minor infection, and there is no such thing as chronic Lyme disease, that "post-Lyme disease syndrome" is officially published as something that some people go through, but don't worry, it's ok, they'll be all right again soon. But that's enough of the soapbox!
I read that there is a much better test being developed, so I hope that's true, and also that is possible for it to be accepted as a new standard if it is that much better.
It does concern me (for research funding and public health as much as anything) that our official government position is that Lyme is a minor infection, and there is no such thing as chronic Lyme disease, that "post-Lyme disease syndrome" is officially published as something that some people go through, but don't worry, it's ok, they'll be all right again soon. But that's enough of the soapbox!
I read that there is a much better test being developed, so I hope that's true, and also that is possible for it to be accepted as a new standard if it is that much better.
I think you're right that the only constant about Lyme & Co. is that it varies. No wonder the docs are confused ... and that may be part of the reason so many docs have trouble recognizing Lyme and its co-infections.
Like the old story about the blind men and the elephant -- the description of what the elephant looks like depends on what part of the elephant each blind man is touching.
Like the old story about the blind men and the elephant -- the description of what the elephant looks like depends on what part of the elephant each blind man is touching.
Thanks!
I have NutraMedix detox Burbur, Pinella, and Parsley, so I am using those, and they do seem to help.
I am also realizing that some things I didn't know could be Lyme-related probably are, mostly through herxing. That's why I was curious about others experiences with what I call primary and secondary symptoms: for me, the primaries are debilitating knee pain and fatigue. I call them primary because I have them all the time. Then there are things like losing my balance, headaches, dizziness, other joint pain, tingling and numbness that happen occasionally. I call them secondary because they are not as severe for me and they are occasional.
What really prompted my question to the group were some jolts of intense pain in my left jaw joint (TMJ) because I don't recall ever having had that type of pain before, but I'm pretty certain they were herxes.
About the only thing constant about this disease, though, seems to be that it varies, but I thought someone else here might have had similar experience.
I have NutraMedix detox Burbur, Pinella, and Parsley, so I am using those, and they do seem to help.
I am also realizing that some things I didn't know could be Lyme-related probably are, mostly through herxing. That's why I was curious about others experiences with what I call primary and secondary symptoms: for me, the primaries are debilitating knee pain and fatigue. I call them primary because I have them all the time. Then there are things like losing my balance, headaches, dizziness, other joint pain, tingling and numbness that happen occasionally. I call them secondary because they are not as severe for me and they are occasional.
What really prompted my question to the group were some jolts of intense pain in my left jaw joint (TMJ) because I don't recall ever having had that type of pain before, but I'm pretty certain they were herxes.
About the only thing constant about this disease, though, seems to be that it varies, but I thought someone else here might have had similar experience.
I actually tested CDC positive as well as Igenex positive. My doctor should have reported my case to the CDC but never did.
As for herxing, detoxing is very important to help those. Common ways are with a lot of lemon water, Alka seltzer Gold, activated charcoal, I fared saunas. I also have detoxing herbs from Cowden and Byron White. They help a lot.
Good lunck
As for herxing, detoxing is very important to help those. Common ways are with a lot of lemon water, Alka seltzer Gold, activated charcoal, I fared saunas. I also have detoxing herbs from Cowden and Byron White. They help a lot.
Good lunck
Welcome! We like lurkers too. :)
You ask: "how many people here have actually tested positive by CDC standards?" I think I did ... but it was a long time ago, so memory fades. My doc was surprised at my how strong my immune reaction was, given how long I had been ill. Everybody is different for all kinds of reasons.
"it seems that the longer a person has been infected, the less likely it is that ALL of the CDC-required levels will be met." --> I think that's accurate, because the test used by the CDC looks for your immune system reacting to the Lyme bacteria, and after a period of time, your immune system figures the bugz are all dead, so the immune system stops reacting ... when actually the Lyme bacteria may well be simply hiding in the body waiting to emerge again.
So ... I wouldn't get all hung up over the CDC tests: they were structured not for accurate diagnostic purposes, but instead for epidemilogical tracking purposes, which set a very high bar to achieve a positive on the test, so that the population infection tracking data is as pure as can be. That is, unless it is a VERY high level of positive on the test, the results are counted as negative, so many very ill people are held to be NOT infected, when really they are.
The CDC tests were later (wrongly) adopted as *diagnostic* [NOT tracking] tests, but the higher diagnostic bar is not the proper tool to measure infection in a population. So yes, you may indeed have Lyme but show negative on the CDC tests. (My doc ran a CDC test on me for his own diagnostic/measurement assessment [he is a researcher as well as a practicing Lyme doc], and my CDC test was positive, which is not all that common. My doc was impressed by the strength of my immune system, so bear in mind that there are a lot of variables in judging the why and how of test results.
A positive CDC test is not a consistent finding among those WITH Lyme, and other variables like how long the infection has been in place, how strong the patient's immune system is, etc. can alter the results.
Hence the need for the IGeneX test, which is more accurate in diagnosis than the CDC test. Your poll may be unintentionally skewed, since many who have Lyme did not have a doc who tested with both CDC-type and IGeneX tests. That is, it's not a one-to-one correspondence of symptoms and results.
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You also ask: "has anyone else experienced herxing in ways that are not the primary symptoms for you?" I wouldn't be able to differentiate primary from secondary symptoms -- I had babesia along with Lyme -- there is no way to tell which symptoms relate to which infection, and there may be other variables as well.
You ask: "how many people here have actually tested positive by CDC standards?" I think I did ... but it was a long time ago, so memory fades. My doc was surprised at my how strong my immune reaction was, given how long I had been ill. Everybody is different for all kinds of reasons.
"it seems that the longer a person has been infected, the less likely it is that ALL of the CDC-required levels will be met." --> I think that's accurate, because the test used by the CDC looks for your immune system reacting to the Lyme bacteria, and after a period of time, your immune system figures the bugz are all dead, so the immune system stops reacting ... when actually the Lyme bacteria may well be simply hiding in the body waiting to emerge again.
So ... I wouldn't get all hung up over the CDC tests: they were structured not for accurate diagnostic purposes, but instead for epidemilogical tracking purposes, which set a very high bar to achieve a positive on the test, so that the population infection tracking data is as pure as can be. That is, unless it is a VERY high level of positive on the test, the results are counted as negative, so many very ill people are held to be NOT infected, when really they are.
The CDC tests were later (wrongly) adopted as *diagnostic* [NOT tracking] tests, but the higher diagnostic bar is not the proper tool to measure infection in a population. So yes, you may indeed have Lyme but show negative on the CDC tests. (My doc ran a CDC test on me for his own diagnostic/measurement assessment [he is a researcher as well as a practicing Lyme doc], and my CDC test was positive, which is not all that common. My doc was impressed by the strength of my immune system, so bear in mind that there are a lot of variables in judging the why and how of test results.
A positive CDC test is not a consistent finding among those WITH Lyme, and other variables like how long the infection has been in place, how strong the patient's immune system is, etc. can alter the results.
Hence the need for the IGeneX test, which is more accurate in diagnosis than the CDC test. Your poll may be unintentionally skewed, since many who have Lyme did not have a doc who tested with both CDC-type and IGeneX tests. That is, it's not a one-to-one correspondence of symptoms and results.
-------------------------------------------------------
You also ask: "has anyone else experienced herxing in ways that are not the primary symptoms for you?" I wouldn't be able to differentiate primary from secondary symptoms -- I had babesia along with Lyme -- there is no way to tell which symptoms relate to which infection, and there may be other variables as well.
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