posted
This might seem like an extremely obvious question, and I think I already know the answer because I've been living it, but I don't want to be too presumptuous. Other people may have a different definition than I do.
posted
The disease that ensues from infection with Borrelia Burgdorferi (and/or any or a number of certain other Borrelia) that persists beyond the 30 days of antibiotics recommended by the Infectious Disease Society of America's treatment guidelines. It easily evades detection by the blood tests that are currently in use.
No, I think it's an excellent question. Before we can fight a battle, we need to know what battle we're fighting.
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Okay, that sounds like a good start, onbam.
Just to give everyone the full CDC story, here is the 2011 (we're already up to a 2011 definition? I didn't know this) case definition for Lyme.
If you were going to try to rewrite different sections, how would you rewrite them to define Chronic Lyme disease?
Any takers? Even just rewriting one section to apply to Chronic Lyme may give you satisfaction... (Frankly, that whole "late manifestation" symptoms are annoying to me, and I'd like to know if anyone else shares that view.)
----
2011 Case Definition CSTE Position Statement Number: 10-ID-06 Clinical Description
A systemic, tick-borne disease with protean manifestations, including dermatologic, rheumatologic, neurologic, and cardiac abnormalities. The most common clinical marker for the disease is erythema migrans (EM), the initial skin lesion that occurs in 60%-80% of patients.
For purposes of surveillance, EM is defined as a skin lesion that typically begins as a red macule or papule and expands over a period of days to weeks to form a large round lesion, often with partial central clearing.
A single primary lesion must reach greater than or equal to 5 cm in size across its largest diameter. Secondary lesions also may occur. Annular erythematous lesions occurring within several hours of a tick bite represent hypersensitivity reactions and do not qualify as EM.
For most patients, the expanding EM lesion is accompanied by other acute symptoms, particularly fatigue, fever, headache, mildly stiff neck, arthralgia, or myalgia. These symptoms are typically intermittent.
The diagnosis of EM must be made by a physician. Laboratory confirmation is recommended for persons with no known exposure.
For purposes of surveillance, late manifestations include any of the following when an alternate explanation is not found:
* Musculoskeletal system. Recurrent, brief attacks (weeks or months) of objective joint swelling in one or a few joints, sometimes followed by chronic arthritis in one or a few joints. Manifestations not considered as criteria for diagnosis include chronic progressive arthritis not preceded by brief attacks and chronic symmetrical polyarthritis. Additionally, arthralgia, myalgia, or fibromyalgia syndromes alone are not criteria for musculoskeletal involvement.
* Nervous system. Any of the following, alone or in combination: lymphocytic meningitis; cranial neuritis, particularly facial palsy (may be bilateral); radiculoneuropathy; or, rarely, encephalomyelitis. Encephalomyelitis must be confirmed by demonstration of antibody production against Borrelia burgdorferi in the cerebrospinal fluid (CSF), evidenced by a higher titer of antibody in CSF than in serum. Headache, fatigue, paresthesia, or mildly stiff neck alone, are not criteria for neurologic involvement.
* Cardiovascular system. Acute onset of high-grade (2nd-degree or 3rd-degree) atrioventricular conduction defects that resolve in days to weeks and are sometimes associated with myocarditis. Palpitations, bradycardia, bundle branch block, or myocarditis alone are not criteria for cardiovascular involvement.
Laboratory criteria for diagnosis
For the purposes of surveillance, the definition of a qualified laboratory assay is
1. Positive Culture for B. burgdorferi, or 2. Two-tier testing interpreted using established criteria [1], where:
a. Positive IgM is sufficient only when ≤30 days from symptom onset b. Positive IgG is sufficient at any point during illness
3. Single-tier IgG immunoblot seropositivity using established criteria [1-4]. 4. CSF antibody positive for B. burgdorferi by Enzyme Immunoassay (EIA) or Immunofluorescence Assay (IFA), when the titer is higher than it was in serum
Exposure
Exposure is defined as having been (less than or equal to 30 days before onset of EM) in wooded, brushy, or grassy areas (i.e., potential tick habitats) in a county in which Lyme disease is endemic. A history of tick bite is not required.
Disease endemic to county
A county in which Lyme disease is endemic is one in which at least two confirmed cases have been acquired in the county or in which established populations of a known tick vector are infected with B. burgdorferi.
Case classification
Confirmed: a) a case of EM with a known exposure (as defined above), or b) a case of EM with laboratory evidence of infection (as defined above) and without a known exposure or c) a case with at least one late manifestation that has laboratory evidence of infection.
Probable: any other case of physician-diagnosed Lyme disease that has laboratory evidence of infection (as defined above).
Suspected: a) a case of EM where there is no known exposure (as defined above) and no laboratory evidence of infection (as defined above), or b) a case with laboratory evidence of infection but no clinical information available (e.g. a laboratory report).
Comment
Lyme disease reports will not be considered cases if the medical provider specifically states this is not a case of Lyme disease, or the only symptom listed is "tick bite" or "insect bite."
Pinelady
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What is Chronic Lyme disease?
IMO the worst crime against humanity that has ever been seen...
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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It is a lousy, lousy deal, agreed. I don't know if it's the worst - but it's up there, definitely.
Seriously, Pinelady, if you had to try defining it, or took just one section like "lab criteria for diagnosis" apart and rewrote it to your liking, what would it say?
Pinelady
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Camp rewriting at this time seems futile without acceptance of testing criteria of null and void and criminal.
I think about Bill Gates Billions going to make new vaccines and get sick knowing what we have floating in the pop.s
We have the technology to find alternative tests and they refuse because they don't want it found!
We the people have to draw the battle line. They are not going to do it for us that is quite plain.
Until we make them stop killing kids like Alex and try as they might kids like Jessica in Mexico.
And all the other kids stuck with their syndromes and all the People with MS, etc. that they get to profit from their illness---nothing will change.
We did not ask for this disease, but we have been charged with making a difference for those who can't.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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I don't see why you think it's futile. I still think it has value, and having a note on serology with citations can help. Serology issues can be made part of the definition.
You bring up a very good point about alternative tests. I agree 100% that new tests are needed. The earlier people are diagnosed and treated, the better.
The newer vlsE test may even be a better blood test, I don't know yet - it needs evaluation.
None of us asked for this, Pinelady. And I don't want kids - or adults - to die or to suffer. The suffering has been horrible, and I'd like to see things get better.
How we get there may be a matter of opinion. Working for change is better than waiting for it - that's all I know. For me, it's collecting information and setting up other channels to get the word out about Lyme disease and tickborne infections. For you, it might be a different path.
I'm not sure where you are drawing the "battle line" - maybe so I can understand what page you're on, you could explain it to me? I think we have to demand accountability in research and get answers, but I suspect you mean something beyond what I am stating.
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Pinelady
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Camp you might have more insite by asking those who have been here since Lymenet began or since Lyme was first discovered to understand where I'm coming from...
This is why I believe nothing will change until those responsible for the Lyme crimes (of which there are many) are brought to Justice.
I believe as soon as this happens and all are punished things will move very quickly for the public.
Even though we now have many researchers telling us the truth. No one but the suffering is listening...Except colleges and universities and the Czech Republic. ----------------------- The prediction determines 5 levels of risk of attack according to the current proportion of host-seeking ticks, and thus determines the risk of TBE infection. The levels of risk defined by the TICKPRO program are supplemented by instructions on how to prepare oneself for entering sites with potential tick occurrence,
how to move around once there,
and how to behave on returning home.
This warning system is weekly published on websites of National Institute of Public Health and CHMI, Prague, over entire season (March-November).http://www.ncbi.nlm.nih.gov/pubmed/21361109 --------------------- The CDC will not even tell doctors -- to get a better result on the WB antigen/antibody test they may have to kill some first---
and they sure are not teaching this which will put us back another 4 yrs for each group that goes thru colleges and universities---and 90% of states web sites do not offer any warnings for tick protection,
so who do you blame for the last 25 yrs? Ignorance for giving a tick antigen vaccine to 1.4 million without studies to prove it was not infective?
Ignorance for giving our cattle a tick saliva vaccine for the last 10 yrs. without proof it was not infective?
Ignorance for allowing them to bait wild animals with a Oral Rabies Retrovirus without conducting studies if the ticks that feed off those animals will now be carrying Rabies antigen to its next victim which may be your or your child.
Ignorance in allowing them to take out the 2 most important bands needed from the WB.
Ignorance in allowing them to profit from tests that did not work even after they knew it?
Ignorance in allowing them to under treat when we now have many studies that state infection is not cleared when it is capable of reverting to cyst forms or L forms in less than a min. when attacked.
Ignorance by allowing Millions to die of their syndromes of unknown origin because of the greed of the few...
The ignorance and denial of XMRV/and the folding ability of borrelia's proteins. Another retrovirus!
In a small sample it was found that 14 of 17 children (82%) of the children were positive for XMRV infection. WHAT DO YOU DO? GIVE EACH CHILD A MILLION AND SAY GO FIND OUT WHAT ALL YOU HAVE AND TREAT IT TO GET WELL? OR DO YOU JUST PICK A SYSTEM AND WORK THRU THEM ALL TO GET AS WELL AS YOU CAN?
We now have citations by 5 groups asking for another Lyme vaccine---What say you--should they be funded for the SOS? LOL
They have proven that vaccines are shed in HIV patients, what about all those who just have a "Syndrome"?
I believe all those who had anything to do with any of the lies should be brought to justice.
In the mean time we get take 2 aspirin and call me in the morning.
http://www.ncbi.nlm.nih.gov/pubmed/21347512 Int J Mol Med. 2011 Feb 23. doi: 10.3892/ijmm.2011.626. [Epub ahead of print] Prion peptide-mediated cellular prion protein overexpression and neuronal cell death can be blocked by aspirin treatment.
J Pathol. 2010 Nov 26. doi: 10.1002/path.2832. [Epub ahead of print] Human embryonic stem cells rapidly take up and then clear exogenous human and animal prions in vitro.
Based on our recent discovery that translocation of OspA through the borrelial OM requires an unfolded conformation [21], we propose that the structural instability of mutants contributes to their ultimate surface localization.
So while Sweden and India among some of the countries building multimillion dollar stem cell treatment facilities for all kinds of disease--including diabetes and cancers...
We will still be stuck for at least the next 10 yrs in tests that don't work and no treatment for the syndromes because they refuse to lose their profits that are allowed by giving vaccines to people who just have syndromes and INS. co's who don't want to pay..... ----------------------------------------- If charges are not brought and justice served it will continue as it has the past 25yrs. IN lies. ----------------------------------------- There is a new book just out last month---"God Science"---It may help explain things a lot better than I can. I have not had the privilege to get it yet.
I look to the new Syphilis tests that the US says we don't need to see where we are possibly going.
It is very sad to reflect on lies and greed once again for another organism that has been known since medicine began. While other countries are now finding it at hugely alarming numbers that they had no idea they had even in asymptomatic students...We don't need that test here because you would have to worry about the legal consequences..I kid you not this was cited in a journal.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Pinelady said,
"Camp you might have more insite by asking those who have been here since Lymenet began or since Lyme was first discovered to understand where I'm coming from..."
Maybe I wasn't here since Lymenet began, but I have read about the history of the controversy concerning Lyme disease, have read a good portion of what's on ActionLyme (and looked directly at the cited material, and avoided posts which were off-topic regarding Lyme), watched "Under Our Skin", read "Cure Unknown", and have read and continue to read a lot about Lyme disease in terms of books and scientific journals. I know about the Blumenthal investigation, and I know about the 2009 guidelines review, and the outcome. I haven't read any of PJ's books, but perhaps eventually I would have gotten to them.
So I may have already understood (at least in part) where you are coming from. The question is, how do you set out to accomplish what you think needs to be done? What exactly do you think needs to be done next?
I agree that those who have committed crimes need to be held accountable for them, and all the evidence in support of that submitted. You have to have evidence for the courts, researchers and experts willing to testify on your behalf, and lawyers who understand the science at hand.
In reading your list of links, it begins with links about tickborne infections and Lymerix vaccine and tick saliva vaccine, and I follow you - up until a point. Then you lose me (and admittedly, maybe I have to begin looking at your studies in their entirety to grasp the point) when you begin discussing non-Lyme non-tick related vaccines, prion studies, and stem cells.
Could you tell me what the relationship is between all of these non-Lyme related statements and Lyme-related ones, because I suspect that others might also want to know and are not informed about the connection? Are the scientists who are working in these non-Lyme areas the same as those who have worked on Lyme (who have committed crimes)?
Pinelady said,
"Even though we now have many researchers telling us the truth. No one but the suffering is listening...Except colleges and universities and the Czech Republic."
So, you say these researchers are telling the truth. Colleges and universities and the Czech Republic (I've been reading their research, too). If they know this is the truth, and they're willing to support Lyme patients in getting help, I'd consider them the best allies we could have.
How best to support them is one of the things I'd like to figure out and do, and show them gratitude for all the hard work they've put in. Some people have put their careers on the line to do the work they do.
If we support them and ask them more about what they are doing, and learn from them, I think we could get a lot further in supporting arguments in face of those whom disagree.
Re: Greed? God, don't even get me started. They should have never allowed people to patent organisms. Or have in-house tests that work more effectively than ones for which the public has access. The Bayh-Dole Act turned research upsidedown on its head, and research has moved more away from basic science and into what makes a buck. People are still doing basic science research - but it's harder to come by.
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I say forget "chronic lyme disease" right now and focus on lyme disease.
The way to look at it is that we need to re-open the investigation on lyme disease.
As long as lyme disease is stamped as "case closed" and "cure found" "final test found", we have nothing to work toward.
We need to work toward a cure and to do that we need to get to the point that looks into lyme disease itself with an understanding that the final test and cure may not have been found.
How can you find a cure for a disease that already has a cure? You can't.
Posts: 136 | From arlington, VA | Registered: Jun 2010
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Pinelady
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Camp its all there waiting. There are lots of LymeCrime web sites and yes movies like UOS and Uthe8Ball. What are doctors and researchers doing about it?
Waiting for the people to demand justice. There are those who have enough evidence they can put them all away. And some that could go to jail you would not even suspect.
We can't even get them to come clean on Morgellons-I doubt very seriously if they will any time soon on Lyme if the people do not protest.
http://www.newsdaily.com/stories/tre71n4xn-us-monsanto-roundup/ Don Huber has written a letter to U.S. Agriculture Secretary Tom Vilsack warning that a newly discovered and widespread "electron microscopic pathogen appears to significantly impact the health of plants, animals, and probably human beings." He said the pathogen appears to be connected to use of glyphosate, the key ingredient in Roundup. ------------------------
As for the science, I look to Sweden again who has published findings for Parkinsons patients in what they believe is a prion like protein that causes it.
Prion Like protein as in a protein that can fold and hide other organisms such as the proteins described for borrelia.
I believe I posted all this previously. But will again for you.
Confirmation of the Sweden study in Parkinsons disease...
The organisms they have challenged with the protein so far bear no resistance to the folding of the protein...This is what most would call "prion like" -------------------- I haven't read PJ's book but I can tell you what it is about! Its about how our govt. has let big pharma play God without a care for human life, while only seeking profits. I think I have enough to say without adding the dengue and malaria genetically altered mosquito experiments but know Peru is in trouble right now and I believe they did it to themselves. -------------------- http://www.ncbi.nlm.nih.gov/pubmed/21345375 This explains how proteins can be genes. --------- You see for years they would have you believe that all those syndromes are bad genes/our fault. And nothing could be done so they could protect profits. When now we know that is simply not true. ---------------------------
The program seeks to enhance local control and prevent the spread of epizootic rabies among raccoons and, in Texas, among gray foxes and coyotes.
The program uses baits containing liquid vaccinia-rabies glycoprotein (V-RG) recombinant virus vaccine.
Because contact with ruptured baits can produce vaccinia virus infection in certain persons,
surveillance for human and domestic animal contact with the baits is conducted, relying largely on reports from persons who find baits and call telephone numbers printed on them. ------------------------------ As well as contact with the baits symptoms--Lesions on the skin. We must have these tick to animal studies done to see if the retrovirus Rabies vaccine is being carried to the populations and hidden in the stealth folding of the protein of borrelia.
Retroviruses are classified as exogenous or endogenous according to their mode of transmission. Generally, endogenous retroviruses (ERVs) are not pathogenic in their original hosts;
however, some ERVs induce diseases.
In humans, a novel gammaretrovirus was discovered in patients with prostate cancer or chronic fatigue syndrome. This virus was closely related to xenotropic murine leukemia virus (X-MLV) and designated as xenotropic murine leukemia virus-related virus (XMRV). (I believe this is why they will not come to a consensus on anything about XMRV--if they did they would have to admit we have Prion Like Proteins in our pop.s transmitting retrovirus' cell to cell--and they just don't want to do that -- esp. without knowing what to do about it in the first place.)
The origin and transmission route of XMRV are still unknown at present; however, XMRV may be derived from ERVs of rodents because X-MLVs are ERVs of inbred and wild mice.
Many live attenuated vaccines for animals are manufactured by using cell lines from animals, which are known to produce infectious ERVs; however, the risks of infection by ERVs from xenospecies through vaccination have been ignored.
This brief review gives an overview of ERVs in cats, the potential risks of ERV infection by vaccination, the biological characteristics of RD-114 virus (a feline ERV), which possibly contaminates vaccines for companion animals, and the methods for detection of infectious RD-114 virus. 2010 The International Association for Biologicals. Published by Elsevier Ltd. All rights reserved.
PMID: 20378372 [PubMed - in process] ------------------------------ I am aware of the transplant recipients of active Rabies that killed 4 people and I strongly suspect they did not see it prior to transplant because of the stealth of Borrelia. Or possibly some other Prion Like organism. http://www.cdc.gov/mmwr/preview/mmwrhtml/mm53d701a1.htm ------------------------- If the oral vaccine is able to fold in the protein and transmit genetic material such as what Sweden is reporting in the Parkinsons studies--it must be stopped immediately. Until the proper investigations can take place. There is none such published. I refer also to the recently found virus Sweden suspect to be causing both types of diabetes and SIDS as well as XMRV. Just to name a few.
As well as tick eradication in those areas to prevent illness and transmission in feed stocks and humans. ------------------------------
I have sent this information to the CDC/ETC. and others as well as researchers who have had their hands tied trying to treat RSD patients. Incidentally Jessica who has been treated in Mexico for the last yr. was in one of the states who first began earnest in 2003 using the RabiesRV Baits. NY Hopefully this may give answers or at least the drive to look. ---------------------------------- And until we can make US doctors to understand just what "Prion Like Proteins" are capable of they won't listen either...This is one of the reasons why we have sooo few LLMD's as it is...
This is why Sweden and India are building the multimillion dollar stem cell facilities. Because they know and the US knows too---but refuse to do anything about it. As for our feed cattle---http://www.ncbi.nlm.nih.gov/pubmed/21341268 J Pathol. 2010 Nov 26. doi: 10.1002/path.2832. [Epub ahead of print] Human embryonic stem cells rapidly take up and then clear exogenous human and animal prions in vitro.------REminds me of the movie Pretty Woman--when she went into the clothier and asked the lady if she remembered her--- USA Big Mistake... I guess their waiting to see how many they can get rid of first so they won't have to pay SS to for however long they let them live. ----------------------------
http://www.ncbi.nlm.nih.gov/pubmed/21211038 -a cow walking around with 121 different kinds of bacteria including Wolbachia-Dengue/Coxiella-Q Fever/Borrelia-MCIDS They conducted these studies because they would not culture---reminds me of Lyme patients who are multiply infected.
Now you must know they have also been giving this vaccine made from the saliva of these same ticks and as such are now suspected of transmitting borrelia. And they should not have made any tick vaccines and in their arrogance have spread it around in humans and animals-including all of its proteins..No more than they have been able to for its sister Syphilis.
With the discovery of even more proteins they cannot shut it off just as in syphilis which is why to this day we still don't and won't ever have one and the persons responsible should go to jail...
Commercial tick vaccines for cattle based on the -(cattle tick)-Boophilus microplus Bm86 gut antigen have proven to be a feasible tick control method that offers a cost-effective, environmentally friendly alternative to the use of acaricides.-------It is made from ticks. There is no reason to believe if they cannot find the antigens now they could not and cannot find the proteins then!!!!
http://www.mgel.msstate.edu/tick.htm Rhipicephalus microplus------ (formerly Boophilus microplus) ---------is the most economically-important tick parasite of livestock in the world. Commonly known as the cattle tick, R. microplus has numerous hosts including cattle, deer, buffalo, horses, dogs, pigs, donkeys, goats, and sheep. High level tick infestations decrease the fecundity of parasitized animals and damage host hides. Moreover, R. microplus is a vector for a number of endoparasites including the protozoans causing bovine babesiosis, the most damaging arthropod-borne disease of cattle. --------------------------
My heart is very heavy in the possibilities of the worlds populations. I pray I am proven wrong, but the evidence to the contrary is not there as it should have been before we have to demand it. If you look to published medicine we have hundreds if not thousands working on the proteins. The denial at the expense of patients must stop.
So it is time to either draw the Ace or fold. There is no better time than MayDay May 21st Washington DC to be heard-- for giving us the chance to make change.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Here is an idea. Instead of spending tons of money on doctors treating lyme disease, why not spend that money on a lobbying to get the investigation opened to find a cure for lyme disease.
I don't know if lobbyist or public advertising would be more effective, but something in that direction is more effective.
You have to understand that we have a monopoly in medicine and science, so you must appeal to it politically. Monopolies are things granted by government to use physical force to compete rather than compete based on ability through real world results. With monopolies the money is taken by physical force and given to those who the politicians decide.
There is no seperation of science or economics in the United States or most countries as you would have under capitalism. There is no freedom from coercion. That means licenses are required for doctors which can be taken away, funding for research through government etc. With all that there isn't enough resources to move on this if the political tide isn't with you.
This isn't like the technology undustry, which is a largely free market.
Neck... So .. Stiff.. Arms and legs feel like sparks... vision so jumpy ... waiting so long ...
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applewine said,
"Here is an idea. Instead of spending tons of money on doctors treating lyme disease, why not spend that money on a lobbying to get the investigation opened to find a cure for lyme disease."
The first downside to that approach is that patients still need treatment - how else are they going to get it under your proposal?
Maybe some subset of us who are doing better or not symptomatic would be willing to work on your proposal - but I can't see how everyone will want to shift their expenses from treatment to lobbying and lawyers.
And you can't simply lobby right away - you have to gather evidence and try to knock holes through your own evidence first before presenting it to someone to lobby for investigation. It has to be hole-proof and clear supporting evidence to state your case.
applewine said,
"You have to understand that we have a monopoly in medicine and science, so you must appeal to it politically. Monopolies are things granted by government to use physical force to compete rather than compete based on ability through real world results. With monopolies the money is taken by physical force and given to those who the politicians decide."
If the case you intend to present is one proving that there is a monopoly in medicine and science, that, too is something you will have to prove with hole-proof evidence.
applewine said,
"There is no seperation of science or economics in the United States or most countries as you would have under capitalism. There is no freedom from coercion. That means licenses are required for doctors which can be taken away, funding for research through government etc. With all that there isn't enough resources to move on this if the political tide isn't with you."
It varies to varying degrees in different places, I don't think the approach is uniform.
In countries where doctors are not responding to insurance companies about treatment expense, they are having to respond to the government health ministry - the target has moved, though, and generally the former is more concerned with profit and the latter more concerned with savings. Hybrid systems where medicine is a combination of both private direct-pay care and government subsidy generally seem to give doctors more freedom to make decisions with less third party oversight. This has mixed results, as doctors have more freedom of choice to help patients and also more freedom to potentially harm.
Politics can and does play a huge role - as well as sheer numbers and noise, as it did with the AIDS epidemic and subsequent movement. Even there, though, the issue of science played a role in it.
The sad truth is most people are not moved to change things until either they recognize they are at risk or numbers are so huge a problem cannot be avoided - that's where more education and awareness is useful, but those unaware have to know they are at risk and what potential outcomes are before they will change their behavior.
Right now, with the press the community has received, I think directing energy and effort into both an investigation into a cure politically and working with researchers who want to be supportive and help us find answers is key. In the meantime, people getting the best care they can in order to move forward and get their lives back is important, too.
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Pinelady
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Can we start with these guys who refuse to acknowledge China's research findings that say we only need ONE band on either IgG OR IgM to say positive....
While protecting those who get profits still from the worthless Elisa. This irks me to no end.
Clin Vaccine Immunol. 2011 Mar 2. [Epub ahead of print] Multiplex immunoassay for Lyme disease using VlsE1-IgG and pepC10-IgM antibodies: improving test performance through bioinformatics.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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I've been watching the VlsE assay carefully, and written about it in my blog. The last statement in the abstract applies: "Prospective validation studies appear to be warranted."
According to the study:
"Compared to the Western blot, the multiplex assay was equally specific (95.6%), but 20.7% more sensitive for early convalescent disease (89.0% versus 68.3%, respectively; 95% CI of difference: 12.1% to 30.9%) and 12.5% more sensitive overall (75.0% versus 62.5%, respectively; 95% CI of difference: 8.1% to 17.1%).When used as a second-tier test, a multiplex assay for VlsE1-IgG and pepC10-IgM antibodies performed as well as or better than the Western blot for Lyme disease diagnosis."
The newer test may actually perform better than the old ELISA did for early cases - but notice that at least in the abstract, there is no mention of how the early *acute* patients fared. I need to see the full text.
The question there is whether it matters if people can still have seronegative disease. Doctors still need to be promoters and users of clinical diagnosis.
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Pinelady
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IMO China Pooed on their parade when they gave their guidelines of only needing ONE BAND on Either IgG OR IgM...
IMO the above citations specificity is worthless when the bands needed for diagnosis are not included.
The crime they have gotten away with by taking out the 2 most important bands needed for diagnosis cannot be condoned or ignored by acceptance of any testing that does not include them.
Nor can the failures to tell doctors they may have to challenge to get enough antibodies to even be seen on testing. When the days or mths. of seeing your primary care phy. to what ever disease specialist you get sent to---from bite to being crippled could be lessened by just teaching the stuff right in the first place.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Do you think they are going back to tell all these people they were WRONG?
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Wrong about what, specifically, Pinelady? Do you mean in reference to the introduction?
Excerpt from above cited paper:
"Knowledge of a patient's circumstance of tick exposure is diagnostically useful, because the pretest probability of Lyme disease depends on the patient's risk of having received an infective tick bite
US physicians may see patients who have traveled to or reside in areas of Eurasia where Lyme disease is endemic, where they may have been exposed to B. burgdorferi sensu stricto. However, these patients are more likely to have become infected by 2 closely related but antigenically distinct spirochetes, B. garinii and B. afzelii [2, 5]. The serologic tests described here have not been optimized to detect antibodies to these organisms
The diagnosis of Lyme disease is based principally on clinical manifestations and history of exposure to vector ticks in an area where Lyme disease is endemic [6]. Laboratory tests, especially serologic tests, may be a substantial aid to diagnosis when they are applied appropriately, because the clinical presentations of Lyme disease are sometimes similar to those of other conditions. Tests with high diagnostic accuracy are particularly important, because appropriate antibiotic treatment of Lyme disease is highly effective [7, 8] and incorrect diagnosis may lead to adverse consequences as a result of inappropriate treatment [9 -11]
The Association of Public Health Laboratories and the CDC have recommended a 2-tiered approach to serologic testing for Lyme disease in the United States since 1995 [12]. Serum is first tested by a sensitive method, such as an ELISA or an immunofluorescent assay. Samples found to be positive or equivocal by the first test are evaluated by a standardized immunoblot procedure."
A lot of this is pretty much what patients and their doctors have been saying all along, isn't it? The whole thing about certain Borrelia might not be picked up by this test and Lyme disease is primarily a clinical diagnosis is what should have been said all along.
Do you know how many publications have been written which state such things, offhand? Even by these guys?
Might be a good idea to look up other papers and read their introductory statements for comparison.
The VlsE test seems like it *might* be a better test for Lyme disease - though it needs further evaluation and testing. If it improves the chances of early detection for treatment, that would be a good thing. Combined with two-tier testing, it seems useful for those whom do mount a positive response. (Of course, it doesn't take care of seronegative Lyme cases, but this is about what testing can detect if one is mounting a detectable antibody response.)
I'm still adverse to any reliance on the ELISA test or single tier testing as a way to diagnose Lyme disease - esp the older ELISA.
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Pinelady
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You can read the performance studies.---How many docs do you think will call their patients and tell them--we need to test you again after a antibiotic trial?
Assay differences not revealed by aggregated data Fifty of the 280 Lyme disease serum samples were either rVlsE1 IgG kELISA negative and C6 IgG kELISA positive (n=26) or C6 IgG kELISA negative and rVlsE1 IgG kELISA positive (n=24). Thirty-six of the 280 samples were positive by 2-tiered testing and negative by C6 IgG kELISA; 34 of 280 were positive by 2-tiered testing and negative by rVlsE1 IgG kELISA
At the same time they ignore the bands needed to only include a few...
At the same time stating the possibilities of false positives after China tells us there are no false positives unless the band that is pos. is 41kDa only.
Which can mean other organisms as well. --- If 2 million tests are performed annually,
the number of false-positive results would be ∼20,000 for every 1% reduction in test specificity,
a number higher than the total number of Lyme disease cases identified by the national mandatory reporting system in any given year [3]
---Performance of the rVlsE1 IgM kELISA The false positives in this IgM test were clustered in the category of healthy blood donors from areas where Lyme disease is not endemic (5 of 6 subjects)
I know of no states in which it is not endemic. False pos. as in giving our cattle a tick saliva vaccine for the last 10 yrs. by many countries. I think not.
---Evaluation of C6 IgG ∪ pepC10 IgM The sensitivity for 31 patients from whom serum was collected within 2-4 weeks after the onset of EM was 0.677 (95% CI, 0.501-0.814), nearly 20% higher than that of 2-tiered testing during this period of acute disease
They didn't tell this dummy if those very same patients had already had antibiotics or not. So who's the wiser?
---If a patient develops EM and resides in or has traveled to an area where Lyme disease is endemic, rash recognition remains the diagnostic method of choice. Empiric antibiotic therapy is appropriate, and serologic testing is not recommended [6, 7]. The improved sensitivity of the kELISAs for early acute disease, compared with 2-tiered testing, and high specificity are clinically useful in some circumstances. These are defined formally as when the pretest probability of Lyme disease is 0.20-0.80 [6, 7]. If a patient has a rash that is not typical of EM, a positive serologic test result will support the diagnosis of Lyme disease because of the high specificity of the test. Nevertheless, a negative test result for such a patient, even with an improved test sensitivity of 63%, may not reduce the probability of Lyme disease sufficiently to rule out the diagnosis.
--- At convalescence, after antibiotic treatment of EM patients, the sensitivity of the C6 IgG ∪ pepC10 IgM kELISAs reaches 80%
At convalescence as in your cured? Do these people really know this disease?
----Samples from patients with human granulocytic ehrlichiosis were not included in this study, because we could not rule out coinfection with B. burgdorferi in the samples available
This tells me NO they really did not.
Reckon which proteins they pick out to say you have Alzheimers? http://www.ncbi.nlm.nih.gov/pubmed/21264269 2011 Jan Identification and validation of novel cerebrospinal fluid biomarkers for staging early Alzheimer's disease.
http://www.ncbi.nlm.nih.gov/pubmed/21372138 J Biol Chem. 2011 Mar 3. [Epub ahead of print] Seeding of normal tau by pathological tau conformers drives pathogenesis of Alzheimer-like tangles.
http://www.ncbi.nlm.nih.gov/pubmed/21320077 Acta Neurol Scand. 2011 Feb 15. doi: 10.1111/j.1600-0404.2010.01477.x. [Epub ahead of print] CXCL13 chemokine in pediatric and adult neuroborreliosis. In contrast, CXCL13 serum levels show great variance even in the healthy population and are not indicative of active NB.
http://www.ncbi.nlm.nih.gov/pubmed/21373761 2011 Mar J Neural Transm. 2011 Mar 5. [Epub ahead of print] Mechanisms of neurodegeneration shared between multiple sclerosis and Alzheimer's disease.
I try to read it all not just the introductions. I may not read between the lines as well as others though.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Pinelady
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posted
But---as far as I'm concerned they can throw them all out....
Wells were washed 5 times in 13 mM Tris HCl, 3 mM Tris base (pH 7.4), 140 mM NaCl, 2.7 mM KCl, and 0.05% Tween 20 (TBS-T), followed by the addition of 300 μL of blocking buffer (15 mM NaCl, 10 mM Tris HCl [pH 7.5], 0.05% Tween 20,
and 3% fetal bovine serum [Hy-Clone]),
http://www.ncbi.nlm.nih.gov/pubmed/21211038 -a cow walking around with 121 different kinds of bacteria including Wolbachia-Dengue/Coxiella-Q Fever/Borrelia-MCIDS These studies were done because they did not culture.
This is why we have hundreds if not thousands working on prions and prion like proteins. They did not get rid of it slaughtering over 200 million cattle in the name of protection while at the same time refusing to acknowledge the truth.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Pinelady
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posted
AU is just one of the countries that used it...AU supplies McDonalds with most of their beef for international export....
Not to mention the US and several countries in SA that I have been able to reference so far...
Chronic Lyme disease is not just Lyme disease.
It is a prion like protein that can fold with any organisms put before it and cannot be killed.
It is a God Like Protein that carries the infections. And IMO man made.
The organisms that fold with it may be killed with great difficulty.
But the best treatment is one which is not being disseminated as yet.
That is prevention of the aberrant folding of the proteins that been shown to have cell to cell transference with great efficiency.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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lymie tony z
Frequent Contributor (1K+ posts)
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posted
Who the heck are all of you on this thread?
My GAWD!
This is much too much superfluous non-double
spaced information for any "Missnomer'ed"
patients to read or benefit from!
Anyone reading this would have to conclude
someone's definitely not on the side of the
patients....of the contributors....
I mean....to even bring up location location
location of being in an endemic region for tick
infestation or disease is about as riddiculous
as one could get and would need to read no
further....
the word "CURE" should never ever be used in any
context where "missnomer'ed" diseases are
discussed especially if in the same paragraph
IDSA is also mentioned....
The Crimes of Lyme....Geez....what camp...you
don't know of them or something?
By the number of posts you've supposedly got
connected to your name here....I would hazzard
a guess at you're being somehow connected to
the Yalies....just plugging in a subject such
as you have for ammunition to use against
folks around here....
a probe on "what is chronic lyme disease" are
you kidding?
How about a probe on why the AMA and the
pharmaceutical industries finding cures for
absolutely NOTHING!
Now, finding drugs that block just about every
NORMAL bodily function we have! Now there's
something the pharmaceutical industries know
about! That's basically all they know HOW to do!
I would say it all started with antacids
versus the antibiotics used to kill
heliocobactor-pylori would be a good start!
Gee, why take something like a 14day antibiotic
regimen to rid oneself of the heartburn symptom
instead of taking ant-acids...for the rest of
ones life....or the various brands of acid pump
retarding medications.....so one does'nt get
heartburn...which of course sets anyone's bodies
into motion to add medication upon medication to
offset the results of blocking a NORMAL bodily
function...that is the breaking down of food to
it's base elements needed for any properly
functioning metabolic process!
and gee....
let's see....calcium and vitamins and minerals
that the body needs and can't get any longer will
neccessitate a whole host of medications!!
Heck...even the "Alternative herbs and meds
folks" are happy about those medications that
have been on the market for....gee...how long
now????
What else can we not cure and make worse...
Hmmmmmmmmmmm....Oh....I know!
OH YEAH....lets see what happens if we slow down
and dang near negate everyone's normal disease
preventative...the human immune systems....NOW
WE'RE REALLY TALKING!
and heck.....we can always later, after the
patients complain too much
then come to the
obvious conclusion that the patients don't have
anything chronic....at all....they have in effect
an "AUTOIMMUNE DISSORDER OR DEFICIENTCY"....
that's like knowing where the "WEAPONS OF MASS
DESTRUCTION ARE LOCATED"....cuz we(the cia
and other previous covert operations) had the
receipts for them....
rather what I heard a "former U.N. ambassador"
say on one of the "NEWS" media yesterday!
something tatemount to "FIGHTING FOR PEACE" is
like "FORKING FOR CHASTEDY!
Where Libya was concerned...he said we need an
"Authorized(or congressionally sanctioned)
COVERT Operation"??????
What the heck is THAT AGAIN????
Is that an oxymoron....or was he just a moron?
If you don't get these referrences and their
correlations....then I know there's something
wrotten in denmark!
I'm surprised at this whole thread!
(well not really)!
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Pinelady
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Member # 18524
posted
Where you been zman? Missed you.
Any comments on the proposed cuts in EDGE-E-CATION?
They hope to keep US hopelessly stupid--
While others like Sweden will open 2 new facilities housing over 100 researchers to treat
and cure Diabetes, Cancers, and other chronic illness.
While the US is still arguing over which test to use for stupid little ole Syphilis...LOL
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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lymie tony z
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Member # 5130
posted
Syphilis.....syphilis....
what?
are we being funny now?
don't you mean spirochetes???
or
is what I remarked above true to the letter? piney!
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
No Z i'm serus here....Either the new test that other countries are using is picking up both----or we have a huge epidemic that is being missed of Syph.
Of course the US says we don't need it--ya might have to worry bout goin to jail if it were found in your kids....LOL
Get um Tiger...LOL
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Pinelady
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posted
You know in 1985 they predicted Syphilis would be gone by 2012--- Now other countries are reporting out of control numbers in asymptomatic kids and students.
The timeline of the appearance of HIV/ MAD COW/ "Syndromes of Unknown Origin"/the progress of "Resistant" in organisms that are easy to find/ the decline of TB/Syphilis/
is not just coincidence. They never went anywhere!
They ignored the stealth so long all these people will now deplete the populations as so prescribed we need...
The crooks should be shaking in their padded chairs for what they have done to protect profits.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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lymie tony z
Frequent Contributor (1K+ posts)
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posted
Although you won't get any argument from me
concerning the evils that lurk behind the profit
loss columns in stockmarkets worldwide. Nor the
reasons for scientific retardedness in
conjunction with conspiracy "theories" related
to over population. Steps others may be
involved in to avoid or rectify this inevitable
conclusion for the "greater good of humanity.
I doubt very seriously if syphilis is the real
threat you might think it to be. Rather the same
ignorance surrounding borrelia recognition is
closer to the truth. Much as it was misdiagnosed
in most of the U.S. Servicemen that invaded
Europe in WWII and became infected with a
spirochete's. Thought then to be syphilis so
the doctors then treated with about 80 single
shots of penicillin given in either five or ten
day intervals....which sounded funny to me but
came straight from a corpsman who delievered
these shots to the rumps of the soldiers in
Europe before any of them were allowedto return
to the good ole USA. But,in most cases was
probably borrelia. However I don't understant
your use of the word "stealth" in describing
syphillis. Other than Borrelia being missed and
diagnosed as syphillis. Is this what you mean
when referring to a "stealth" bug? This is the
"probable"
cause for the emmergence of the european species
of borrelia
showing up in the U.S.. Notwithstanding bioweapon
theories which abound, can hardly leave out that
possibility. Nor the connection, we've seen with
returning veterans, plagued with what they
obviously contracted stateside, already
infected with
borrelia species. However due to the shear
number of vets and the costs associated with
the thruth, if it were to come out. Because of
the powers that be who would lose money. ID Dr's
of the VA Hospitals, attempting to misdirect
health concerns of our recent veterans, away
from service connected infections or possability
of their becoming victims of WMDestruction
while serving in the
middle east conflicts/ where at least one woman/
scientist doctor/lymie, found the disease in the
very soil where our military conducted their var-
ious rescue missions or misguided attempts at
spreading democracy abroad.
Missdiagnosed "GULF WAR SYNDROME",(the real
misnomer),
only just recently becoming HIV. Strangely
coincidental with the published IDSA guidelines
suggestions. Only, thinly veiled to an observant
reader.
They're all banking on individual veterans so
diagnosed, and the liklihood of them all getting
together and comparing diagnosis notes/and or
medical records/treatments.
The very nasty business of denial of veterans
benefits, due to something that could well have
been contracted by shady behavior or conduct,
while serving their country, in far away places,
defending the very same people who would deny
them the correct diagnosis and treatments for
a disease or diseases contracted through no fault
of their own....other than doing basic training
and being infected and not fore-warned of the
dangers the ticks they were pulling off of them-
selves and their commrades after maneuvers in
forts DIX or anywhere else they might have went
through their basic training exercises. Learning
war in the name of protecting the
very country, politicians and various
organizations, heretofor sworn to protect, the
very citizens who believe there's actually
still something worth protecting.
Nothing cyclical about these diseases my fanny!
no not synical...
Why, everything about these things are connected
in a very sick and perverted cyclical way with
greed of money, at the very root. Which is just
as messed up as the prez calling all Americans
"addicted to OIL". We're NOT addicted to OIL.
Bushey's Family is addicted to it's MONEY from
OIL and their intimate relationships with the
Saudi Nations. Give the American people an alt-
ernative fuel source and supply....and we would
gladly (the majority anyway) switch over to
electric cars....or steam or compressed air...
They won't or don't do this because of the fears
it would TANK our economy....which is bull!
When Brazil went to Ethanol...it did'nt hurt
their economy now did it! Nor are their any
irrelavent SCARE TACTICKS about not being able
to FEED all the hungry people in the world if
we deplete the corn that is virtually stockpiled
all around the corn belts farms or processing
plants and cilo's.
How convenient borrelia affects so many systems
yet does'nt kill outright! Keeping unsuspecting
"cash cows" alive to pay taxes and doctors and
pharmacies. Now THAT's where our economy is!
"Healthcare"...or at least the ILLUSION of what
our healthcare system USED to be years ago.
NOT NOW....Now all we have are doctors who can't even read your medical files before they spend
the eight or so minutes alone with you in their
exam rooms....nor can they attend the continuing
educational seminars their supposed to be
getting credits for...supplied instead by the
very same drug reps who educate them on the
latest new "blocking drugs"
the pharmaceutical companies want their
patients to "FINISH" the drug test on, as human
guinea pigs. That's why there are sooooo many
lawsuits being filed every other day on every
new drug that comes down the pike!
The further shame is that the people that win
these lawsuits are kept quiet about their
settlements(BRIBES)because the pharmaceutical
industry has soooooo much money. Hell, they can
even write Washington DC, to halt legislature in
both houses of our (supposed "for the people")
government constituents and stop grassroots
organizations from passing legislation for the
sick and dieing who need funds for research....
REAL RESEARCH.....so, instead of blocking the
human body from doing it's job properly....
perhaps "real cures" instead of stopgap treat-
ments to MASK symptoms could actually be found.
But,
I GUESS that would save toooooo many lives...in
an already overpopulated earth.
Whatever.....is lyme disease chronic....or is
the lust and sin of the greedy for
money/power... the REAL chronic
disease infecting most countries is money/power.
Because the people around the world, live under
politicians or dictators who have all read
MACHIAVELLI's "THE PRINCE"!
...indeed!
Dictators, democrats, republicans, despots, pre-
miers, sultans, ayatolla's....their all in the
same boat holding one anothers hands...just
hoping and fearing any humanistic revolt...by
the very masses....who have nothing against
their neighbors(for the majority)! However, are
forced to fight, in all the greedy, power hungry
leaders wars, these so called "leaders" wage
against each other....making sure....none of us
ever make friends with or as Christ would say...
"LOVE OUR NEIGHBORS"....cuz ma and pa down the
street.....or down the next continent....don't
have a beef with each other....until the
media...or
our elected officials tell us who to hate and
kill!
WAKE THE HECK UP EARTHLINGS!
zman I'll get off the soapbox now
[ 03-18-2011, 01:19 PM: Message edited by: lymie tony z ]
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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