Am starting a new thread here as it seems the moderators have closed the original thread entitled "CDC's Johnson Lies to Discredit Dr Sapi and Advanced Labs Culture Method".
Those of you who were present on that thread will remember that a "brand new member" suddenly appeared when I mentioned that the CDC's paper was fraudulent, calling himself "LHCTom".
This same individual later in the thread, after being exposed by Dr Alan Macdonald, admitted he was the hateful former Lyme Programme Officer at NIH, Edward McSweegan!
The phony patient "LHCTom" cultivated his fake identity for a YEAR, just for the purpose of discrediting Dr Sapi's test.
In fact the CDC alllegations that Dr Sapi's good results in her study were simply "contamination", are nonsense. The alleged "contaminating" lab strains were housed in a lab in Ct, 200 miles away from the Advanced Laboratory in Pennsylvania, where the blood culture studies were undertaken.
Fraud upon fraud upon fraud.
My email accounts and possibly even my account here now appear to be interfered with. If Dr McSweegan thinks he can suppress truth in this way, he is a moron - people all over facebook and the social media are now waking up to the fact that he and CDC have committed FRAUD.
Elena Cook
Posted by Catgirl (Member # 31149) on :
Why am I not surprised by this. Idiots like LHCTom will do anything they can to sway people against the actual truth (just like politicians). I guess science based info doesn't apply to people like them. That or they think Americans are stupid enough to buy their story instead--sadly, I think this holds the most weight.
Posted by DaveNJ (Member # 17362) on :
Before you start accusing the moderators of doing something inappropriate you should have searched the site first. You thread is still there right where you posted it.
Posted by Lymetoo (Member # 743) on :
The thread IS closed.
Posted by Abxnomore (Member # 18936) on :
I'm not at all surprised. It's very likely that he trolled non stop on the old Sci Med group along with others that caused it to go totally bonkers and it is not a useless lyme site.
Posted by daynise (Member # 39609) on :
Wow. I just read what I could of the other thread- Looks like I missed a party!
What an honor, however, to have Dr. Alan MacDonald join us on Lymenet. If he is still here reading at all, I would like to personally thank you from the bottom of my heart for all you have done for us.
Thank you too Elena for spreading the truth and taking these monsters to task. People like you give me courage and strength to keep fighting.
As for the troll, I agree with Elena- let him keep revealing himself and keep the hard copies of his posts. These are the death throes of a cruel and sick agenda. The world is awakening to the truth.
Posted by GretaM (Member # 40917) on :
Good research is good research, whether it proves that chronic lyme is real, is not real etc etc.
I just appreciate research about lyme and co in general.
There is so much unknown about lyme and co, that we need (and by we, I mean everyone on the planet) as much research from as many sources and countries as possible.
How can the CDC condone trolling this site? Have they not victimized the public enough?
CDC-please, leave us alone. Your inadequate and completely biased treatment protocols have done enough damage to our lives already.
Perhaps you could judge your own research studies and programs with the same standards that you judge others? Hmmm... Haven't seen much solid research regarding lyme from "the usual suspects" who wrote the IDSA guidelines in a while.
Or are we the research? Like rats in a giant maze. Under observation from various medical tests and through online forums and media.
Leave us alone, you're not welcome here. Go do the devil's work somewhere else.
Don't forget that a few of the individuals who "helped" the IDSA write the standards for lyme treatment have since gone on to direct other disease centers in other provinces and countries.
They spread their net wide.
I never pay much attention to the Plum Island theory but when stuff like this happens, and I see that major players from the IDSA now run disease centers around the world...it makes me wonder.
Posted by GretaM (Member # 40917) on :
I forgot to mention that the BCCDC does the same thing on the CanLyme forum and that is why I won't post there.
And I apologize to my fellow infected-I went on a bit of a rant there...
However, it really gets my goat when good scientists and doctors doing the right thing get slammed by the devil's minions.
Posted by Cold Feet (Member # 9882) on :
Advanced Laboratory Services is aware of the publication of the following article: Johnson BJ, Pilgard MA, Russell TM. Assessment of New Culture Method to Detect Borrelia species in Serum of Lyme Disease Patients. J Clin Microbiol. 2013 Aug 14. We intend to respond directly to the authors of that article and/or the journal concerning the findings in the article. We have no further comment and no one is authorized to comment on our behalf.
And this is the proactive, damage control paper that the CDC has published. Dr. MacDonald has since proven this paper to be false and has written the CDC to have it redacted:
J Clin Microbiol. 2013 Aug 14. [Epub ahead of print] Assessment of New Culture Method to Detect Borrelia species in Serum of Lyme Disease Patients. Johnson BJ, Pilgard MA, Russell TM. Source Division of Vector-Borne Diseases, Centers for Disease Control and Prevention Fort Collins, CO, USA.
Abstract A novel method of culturing spirochetes from the serum of U.S. Lyme disease patients was recently reported by Sapi and colleagues to have 94% sensitivity and 100% specificity for Borrelia species as assessed by microscopy and DNA sequence analysis of the pyrG gene (Sapi E, Pabbati N, Datar A, Davies EM, Rattelle A, Kuo BA. 2013. Int J Med Sci 10:362-376). The majority of the spirochetes described were related by pyrG sequences to species of Borrelia previously undetected in North American patients without a reported travel history to Europe or Asia.
To better understand these unexpected findings, we determined pyrG sequences of the laboratory reference strains used by the investigators for method development and testing of culture medium. Eighty percent (41/51) of the reported patient-derived pyrG sequences are identical to one of the laboratory strains and an additional 12% (6/51) differ by only a single nucleotide across a 603bp region of the pyrG gene. Thus, false positivity due to laboratory contamination of patient samples cannot be ruled out and further validation of the proposed novel culture method is required.
Hope this helps clarify this extraordinary news...
A reminder: test kits are based on ONE strain of the B31 Borrelia -- there are at least ONE-HUNDRED strains of Bb. Why isn't the CDC informing us of these germane facts?
Posted by beaches (Member # 38251) on :
Thank you Elena for continuing to fight the good fight.
And thank you Dr. MacDonald for your dedication and hard work and research on behalf of very sick people.
At the end of the day, truth and justice always prevails. Always.
Posted by susank (Member # 22150) on :
I think it needs to be clarified which labs/kits test only strain B31.
And to avoid having this thread shut down can we please keep McSqueak out of it. Just ignore him. He obviously seeks attention and wants to be controversial. The truth will come out and he is not worth wasting time/energy on. What a waste of an otherwise obviously brilliant mind.
In ref. to the ALS culture test and contamination; it happened or it didn't.
Having watched too many movies - I guess the possibility exists that the tests could have been compromised if some malicious person gained access to both labs and "spiked" the samples. But wouldn't the lab/s have enough security and controls to prevent this?
Posted by beaches (Member # 38251) on :
Susan, I understand your wanting to keep Eddie Mac and his ilk out of the conversation.
But I personally believe it's best that he continues to show up here in whatever persona he chooses to post his thoughts and beliefs, so that healthy and robust debates can continue to take place.
"What a waste of an otherwise obviously brilliant mind." Indeed.
Posted by susank (Member # 22150) on :
Agree. Let him post to his heart's content. But let's not cross the line where the thread gets shut down. I'm interested in the test/s etc - not him personally. Let's not make him into something bigger than he likes to think he is.
Posted by Eight Legs Bad (Member # 13680) on :
SusanK, we already know that ANTIBODY tests in general are pretty worthless in Lyme, especially Elisas and ESPECIALLY in CHRONIC LYME.
So the key is to allow patients access to antigen-based tests. Even if you could create a serological test with every antigen known in Bb sensu lato, you would miss anyone infected with a Borrelia that is NOT PART of the Brugdorferi group altogether.
Thanks to the research on Borrelia miyamotoi, which is in US, is NOT part of the burgdorferi group at all, and appears to group genetically with the relapsing fever borrelia, we know that patients may be sick with a borrelia which no Lyme serological test in the world seems to detect.
As for Mcsweegan - I don't think we should "ignore" him. I think we should take what he has written, including all posts as the fake patient "LHCTom" aka "Thomas Eames" on this and other forums (he did this for a YEAR), and compile them in a dossier, along with his confession, right here on LymeNet, that he was Mcsweegan. This dossier can then form part of a larger dossier on the criminal tactics the Denialists have used to enforce their view, fool the world's doctors, and misery for MILLIONS of borreliosis victims round the world.
You say he has an "obviously brilliant mind"? well, I find him distinctly underwhelming.
He has a very small number of misanthropic misfits who work with/for him on the forums. Mostly men, and one women. The woman is actually, IMO, far more intelligent than him. He is forever putting his foot in it, blowing his own cover. then she often comes to his rescue on forums.
I am confident that in the end, the Lyme community will smoke out all his disgusting little accomplices, just as we smoked out "LHCTom", after a year of spying and disinfo activities in the Lyme movement.
Elena
quote:Originally posted by susank: I think it needs to be clarified which labs/kits test only strain B31.
And to avoid having this thread shut down can we please keep McSqueak out of it. Just ignore him. He obviously seeks attention and wants to be controversial. The truth will come out and he is not worth wasting time/energy on. What a waste of an otherwise obviously brilliant mind.
In ref. to the ALS culture test and contamination; it happened or it didn't.
Having watched too many movies - I guess the possibility exists that the tests could have been compromised if some malicious person gained access to both labs and "spiked" the samples. But wouldn't the lab/s have enough security and controls to prevent this?
Posted by Eight Legs Bad (Member # 13680) on :
Sorry SusanK, I forgot to reply to your other points.
To recap, for anyone who didn't read the original thread - we know for sure that Dr Sapi did not contaminate her blood cultures with lab test strains. The lab strains were housed in Connecticut. The patients' blood was tested in Pennsylvania. So no contamination could have occurred.
Susank, you asked if the CDC etc could have illegally gained access to both labs and maliciously contaminated Dr Sapi's cultures?
Well, the Denialists are certainly prepared to stoop to such criminal tactics, as we clearly see by the McSweegan episode right here on LymeNet.
Such a plan, though elaborate, is theoretically possible, but extremely unlikely, in my view.
You see, to carry out such a plan, they would have first of all had to KNOW that there were TWO different labs involved. If CDC knew this, they would have realised that all Dr Sapi or anyone else had to do, was point out the fact that 2 different labs, in TWO DIFFERENT STATES were involved.
Dr Sapi has a whole team of researchers, including Dr Alan Macdonald, who work with her, not to mention the many technicians, ancillary staff etc who could all confirm that two different labs were involved.
So even if CDC did what you suggest, it would be a pretty stupid and pointless plan.
My guess is, that it simply did not occur to Dr Barbara Johnson of CDC that the work might have been done in 2 phases in 2 separate labs. Otherwise she would never have risked writing such a fraudulent paper and being found out.
Quite apart from the "two lab" issue, the method she used to convince her readers that the patients' positive cultures were the result of contamination was incredibly dishonest and misleading.
She says she took the lab strains and sequenced the same region of a particular gene in them, the pyrG gene, as Dr Sapi had for her patient isolates. She then said all Dr Sapi's isolates were either very, very close, or identical, to one or other lab strain, WITHOUT mentioning that if anyone looks in the nucleotide database, they will find that Dr Sapi's sequences were JUST AS CLOSE or EVEN CLOSER to a whole range of borrelia strains that have nothing to do with the lab strains!
Dr Macdonald has kindly pointed this out for us all, and written to the journal itself, to the CDC, and to the press about this. But my fear, personally, is that the CDC will use their enormous influence to lock him and anyone else who would reveal the truth, out of the debate. They will lean on the journal, and on media editors, not to publish what he says.
Dr Johnson of CDC knows that much of her target readership are treating physicians. Clinicians do not use Blastn and other DNA analysis tools on a regular basis - many doctors probably NEVER use it. I've never had to use as a nurse -it's not part of a nurse's job to analyse DNA sequences.
But scientists like Dr Macdonald and Dr Sapi use it frequently, and so, of course, will have the rodent McSweegan, as well as many CDC scientists.
Dr Johnson of CDC wrote in her published paper, that she had sequenced the gene region in question for 3 of the 4 lab strains . (For one of them, B31, that sequence was already known.)
She claimed she had submitted these sequences to Genbank, the massive database of DNA sequences, which is accessible on the Net to the public, and even gave reference numbers.
But as Dr Macdonald pointed out, they WERE NOT THERE in Genbank!
Why not?
Elena
quote:Originally posted by susank: ....
In ref. to the ALS culture test and contamination; it happened or it didn't.
Having watched too many movies - I guess the possibility exists that the tests could have been compromised if some malicious person gained access to both labs and "spiked" the samples. But wouldn't the lab/s have enough security and controls to prevent this?
Posted by Eight Legs Bad (Member # 13680) on :
Lymetoo, I'm actually not glad that you did close the thread, though I think I understand why you did.
I FULLY understand how traumatic it is for people here to have Dr McSweegan come amongst us. It's traumatic for me! The man has harassed me , on and off, for the past ten years, and sent me death threats.
Moreover, when you look at his record, and what he did when he was Lyme Programme Officer at NIH, you realise the amount of suffering he PERSONALLY is responsible for is huge.
It's as if we were all sitting in a train carriage, when the doors open, and Dr Mengele walks in and sits down amongst us.
When I said, on the now-closed thread, that if anyone found it too much to bear, they should just "close the thread" I expressed myself very badly. What I meant was, they should just close the page.
I did say I felt we should let him stay, because he would EXPOSE himself, and he did! He admitted in public, right here, that he was McSweegan, after using that alias "LHCTom" for a whole year, just in order to deceive us over Dr Sapi's culture test.
We can and we MUST save his posts here and on other forums, and collate them, as they can form an important part of a dossier of evidence that the Denialists use criminal methods to impose their view of Lyme, rather than allowing an open and honest scientific debate.
I think it's of the utmost importance that people here approach their LLMDs now and ask them to log on to Medscape and attempt to post a reply to the fraudulent CDC paper denigrating Dr Sapi.
I tried, but my comment was deleted. I know my account was hacked, (by McSweegan no doubt), as I recently had the same problem on an Alzheimer's discussion there, and so did others who were also trying to post re Borrelia.
Two other Lyme-literate health professionals have told me recently they have had problems with their Medscape passwords, and when I tried to access the CDC article today, my antivirus flashed up a security warning, whereas it did not do that for any other Medscape news item.
If it turns out that none of our LLMDs can get a comment through to Medscape re the CDC article either, and if Medscape moderators are unable (or unwilling) to resolve the problem, this fact MUST be brought to public attention.
The moderators at Medscape did appear to be trying to help us on the Alzheimer thread, undoing some of the sabotage.
But each section may have its own staff, and we know CDC has huge influence over Medscape, with its own, in-house section there. So it's important to know just why responses to the CDC item are not appearing up there.
Elena
quote:Originally posted by Lymetoo: The thread IS closed.
Posted by Eight Legs Bad (Member # 13680) on :
Dr McSweegan used a whole range of false names on the unmoderated Lyme forum "sci med diseases lyme" for years - one of the longest-lived aliases was "Chuck P Adams", a fictitious cancer sufferer who claimed LLMDs misdiagnosed his cancer as Lyme. Perhaps he still uses it.
There are no depths this man won't plumb in his bid to prolong the coverup and enlarge the suffering.
"Chuck Adams" was also the name of the hero/antihero in one of McSweegan's trashy self-published novels, apparently.
Dr. McSweegan does not usually last very long on moderated Lyme forums before being found out. The "LHCTom" persona, which lasted a year, may be his all-time record.
The only "Lyme forum" where he can play these tricks without any fear of being removed is "Lyme NetEurope (LNE). This is because it is a FAKE Lyme forum, set up by HIM, along with a very few small band of twisted accomplices, like the computer programmer Martijn van Duijn, who works for a subsidiary of the giant insurance corporation ING.
This is not to accuse of McSweegan of being an insurance industry shill. I don't actually think he is. He has a different motivation, which he has partially revealed by the things he said on the closed thread, if you read them very carefully.
He deleted many of his posts but many people read them and saved them first.
There are , of course, very many good and sincere people who have joined LNE, not realising it is a Denialist front. Dr Macdonald himself posts on it, where he is frequently subject to the most disgusting and vicious personal attacks, often by McSweegan himself, or one of his accomplices, using the names "hvh808ct", "henry", "bagge" "spanky" etc..
Can you imagine any GENUINE Lyme forum tolerating such abuse against Dr alan Macdonald? Never in a million years.
Elena
quote:Originally posted by Abxnomore: I'm not at all surprised. It's very likely that he trolled non stop on the old Sci Med group along with others that caused it to go totally bonkers and it is not a useless lyme site.
Posted by t9im (Member # 25489) on :
Hi everyone:
I can't find the link but I remember reading Barbara Johnson's defense of the two tier test in at a MD conference (it could have been the IDSA).
This was back in the 2005 / 2006 time frame.
She has to attack the culture test as it contradicts the two tier test and correspondingly her and the CDC creditability. She is the champion of the first tier Elisa C-6 peptide test.
She and the CDC rely on Alan Steere's 2005 research confirming the two tier test (Alan confirming the Dearborn standard he created).
The study was flawed in the sense it was based upon a catch 22 positive feedback loop.
The culture test exposes the flaws in their findings. After all they can't have all these patients testing positive via culture when they are negative on the WB.
Posted by Abxnomore (Member # 18936) on :
Indeed, I know all that you refer to. A very sad situation. Sci Med was once a very excellent Lyme Disease forum.
Regarding the other group, right on! They just transferred over to that site from Sci Med once the trolls totally trashed the site and it was abandoned by anyone who was sane! Many of the monikers are one and the same person.
Posted by miyamotoi (Member # 41833) on :
What are the best tests to confirm Lyme? I've hear horror stories about the ELISA and Western Blot and what does this CDC thing mean for the culture? Any advice appreciated.
Posted by t9im (Member # 25489) on :
Hi miyamotoi:
If you have been off antibiotics for 2 months then I would recommend the culture test.
If you are being treated then I would not come off just for the test, although for insurance coverage it may help. I would recommend the IgeneX western blot.
The WB results will show if you are producing antibodies to the borrelia. But even if you have no positive bands it doesn't mean you don't have the disease. If you do have positive bands it indicates exposure to the borrleia bacteria.
Just as an example our daughter has been negative from at least 10 WB's (she has had positive and indeterminate bands, just not enough at the same time to be positive.
She cultured positive from the same blood draw where she had no positive bands this last February.
Just shows the tests are not the end all.
Posted by miyamotoi (Member # 41833) on :
Tim
Could you explain why IGenex is considered better?
Is there any concern that the culture had so many non-US strains or are they species? Why would that happen?
What about the CD57? What does it mean? Are there any other good alternatives if one comes up negative on the Igenex and or culture?
Are there any other good labs - I read Stony Brook was ok.
Is there any way to get the European versions of the Western Blot in the US?
What if one actually has one of the non-burgdorferi strains missed here?
I read miyamotoi and others is missed by the Western Blot - is that true at IGenex also?
thanks in advance for any help!
miyamotoi
[ 08-31-2013, 02:59 AM: Message edited by: Robin123 ]
Posted by susank (Member # 22150) on :
You might try asking your questions on the Lymenet Europe discussion board. Your questions are just the ones they like to discuss.
Posted by Cold Feet (Member # 9882) on :
I would simply call Igenex and speak to someone. That would likely lead to more concrete & credible answers.And I posted the link for Advanced Labs, but here it is again:
To answer some of your questions, miyamotoi, IGeneX Western Blot tests test against two strains, the B31 and the 297 one, so have more chance to catch infections than if they're just testing against one strain.
Parsing the infection: genospecies is like Borrelia (genus) burgdorferi (species), then there are many strains of it. Etc for the other borreliae. There are estimated to be 100+ strains in the US and 300+ worldwide.
I think IGeneX can detect 60-70% of positive infections. IGeneX says they can detect strains from all over the world.
Other good labs: yes to Stonybrook, also MDL Lab, also Fry Lab for co-infections. Advanced Labs which does the culture test. Maybe others here can list a few more good ones.
And yes, once in a while, European strains show up here. Well, for that matter, so can others from around the world, but it's rare. Usually people catch foreign strains when abroad.
Often people's tests turn positive after some treatment, when they have a stronger immune system again.
It's my understanding there is no test for B miyamotoi, and there needs to be one! Obviously then, that would be a reason why some don't test positive.
Don't know how many places that's going on, but it's going on in CA, I think in S CA. Ticks can be tested in the lab for it, and that's how come they know it's here.
CD57 can test way low in someone who's really ill, but not always. I have a fairly high CD57 score, and I have Lyme.
Posted by t9im (Member # 25489) on :
Hi miyamotoi:
IGeneX is considered better by the ILAD's community because they:
1) Test for 2 strains of the borrelia, increasing the odds of identifying if there is an underlying borrelia infection.
2) Include Bands 31 & 34 which are Lyme specific but not included in the NIH test kit (so Labcorp or Quest wouldn't pick up on these.
3) Provide the band readings without requiring advance request.
The CDC and IDSA have been negative on IGeneX since:
4) it shows much more exposure then the standard labs
5) it classifies a positive as 2 bands (the lyme specific bands only and / or band 41 the flagella band which is not specific to Lyme but is a spirochete borrelia band) not the CDC 5 of 10.
So it is considered "controversial".
Stony Brook we have used them but to show the "inconsistency" between labs - this past April our daughters WB's
Stoney Brook IgG - 41 & 58 positive, 60 IND.
IGeneX - 31, 39, IND, 41 positive
This IGenex was after the Feb IGeneX WB had no band readings but Feb was the positive Advanced Lab culture).
I just think your odds are better with seeing a reading with Igenex.
Stoney Brook is considered less controversial (i.e. IDSA MD's don't ignore its results where with IGeneX they would consider a positive a "false" positive.
Posted by n.northernlights (Member # 17934) on :
we have gotten multiplex pcr machine here i norway that tests for all kinds of known borrelia strains at the same time, including miyamoti I think. It is a private lab.
I checked and they do test for miyamotoi
the american WB tests do not work well with our european borrelia strains
[ 08-31-2013, 06:17 PM: Message edited by: n.northernlights ]
Posted by Eight Legs Bad (Member # 13680) on :
Hello, what is the name of the Norwegian lab that tests for miyamotoi by PCR? And do you know what primers are used ? Thanks. Elena
quote:Originally posted by n.northernlights: we have gotten multiplex pcr machine here i norway that tests for all kinds of known borrelia strains, including miyamoti I think. It is a private lab.
the american WB tests do not work well with our european borrelia strains
Posted by Eight Legs Bad (Member # 13680) on :
Hello brand new member miyamotoi. Welcome to Lyme Net!
Lyme Disease is a clinical diagnosis. The Advnaced Lab test is a good test, but is being falsely maligned by CDC and the usual Denialists.
Eleisas and Blots are antibody tests - not a good chhoice in a disease that plays a million tricks on your immune system and practises antigenic variation.
Elena
quote:Originally posted by miyamotoi: What are the best tests to confirm Lyme? I've hear horror stories about the ELISA and Western Blot and what does this CDC thing mean for the culture? Any advice appreciated.
Posted by Eight Legs Bad (Member # 13680) on :
Robin, I agree with most of the information you provided, but I think maybe it is time we all re-thought the notion that European or other "non-US" strains are rare in US.
We have all come to accept it because it has been repeated ad nauseam that Bb sensu stricto is the ONLY type in US. But what is the real evidential basis for that, esp when we now know Borrelia miyamotoi, which is not even part of the Bb species group, is present in US?
There is not test for miyamotoi, but I wonder whether Bowen Labs, forcibly shut down by the Denialists, might have been detecting it. They used monoclonal antibodies that were specific for Borrelia GENUS (as opposed to Borrelia burgdorferi species group).
I think we should look with skepticism on EVERYTHING the CDC, IDSA etc tell us about Lyme until it is PROVEN by researchers who are independent of US government, military and any other conflict of interests.
Admittedly this is difficult, as the US federal agencies, and those in other countries who are influenced by them, fund the lion's share of research, and also use their influence to prevent good research being published (or launch libellous discrediting campaigns against such research, as we're seeing right now with the CDC Johnson paper).
After all, haven't the same people been telling us for decades that chronic Lyme doesn't exist?
Elena
quote:Originally posted by Robin123: To answer some of your questions, miyamotoi, IGeneX Western Blot tests test against two strains, the B31 and the 297 one, so have more chance to catch infections than if they're just testing against one strain.
Parsing the infection: genospecies is like Borrelia (genus) burgdorferi (species), then there are many strains of it. Etc for the other borreliae. There are estimated to be 100+ strains in the US and 300+ worldwide.
I think IGeneX can detect 60-70% of positive infections. IGeneX says they can detect strains from all over the world.
Other good labs: yes to Stonybrook, also MDL Lab, also Fry Lab for co-infections. Advanced Labs which does the culture test. Maybe others here can list a few more good ones.
And yes, once in a while, European strains show up here. Well, for that matter, so can others from around the world, but it's rare. Usually people catch foreign strains when abroad.
Often people's tests turn positive after some treatment, when they have a stronger immune system again.
It's my understanding there is no test for B miyamotoi, and there needs to be one! Obviously then, that would be a reason why some don't test positive.
Don't know how many places that's going on, but it's going on in CA, I think in S CA. Ticks can be tested in the lab for it, and that's how come they know it's here.
CD57 can test way low in someone who's really ill, but not always. I have a fairly high CD57 score, and I have Lyme.
Posted by Eight Legs Bad (Member # 13680) on :
Good grief! The crazy Dr McSweegan is STILL clinging on to the hope that he can resurrect his pathetic false identity and convince us that CDC are right re the Advanced Lab test.
Having admiited he was McSweegan and even posting a link to his old website in his rela name, he now says "Who's Ed?"
He also posted more pseudo-science to confuse us all.
The CDC DNA sequences have finally been filed in Genbank. Why were they not filed before? As Dr Macdonald pointed out, how could the perr reviewers do their job and verify the accuracy of Dr Johnson's claims, when the DNA sequences she claimed were in Genbank, were not??
McSweegan wrote: "It should be noted that the garinii do also match 2 existing garinii strains from japan and Russia. Not Europe."
Dr McSweegan, do you know any ten year olds? If so, perhaps they can help you with your geography. Much of Russia is in Europe.
You continue to claim that it is "troubling" that Dr Sapi's cultures resemble a lab strain after you have been repeatedly told the lab strains were in a different state altogether, 200 miles away. We know you are vicious, but are you brain-dead too?
Elena
lhctom Member Member # 41709
Icon 1 posted 28 August, 2013 02:06 PM Profile for lhctom Send New Private Message Edit/Delete Post The CDC has entered their pyrG sequences in the NCBI genbank
I used the Virginia.edu DNA sequence comparison tool to do a 1:1 compare of each of the CDC sequences against each of the ALS sequences as in the CDC paper table:
"Table: Comparison of patient-associated pyrG gene sequences with those of laboratory strains of B. burgdorferi sensu lato."
The Virginia.edu sequence comparison tool allows one to enter sequences with accession numbers from the NCBI database. It gives a percentage match of aligned sequences and shows differences,
The CDC paper table percentages are correct for the garinii and azfeli sequences.
The CDC paper table percentages are in error by one character for the burgdorferi sequences because there is an error in the CDC sequence for KF170281.1 at its character position 618 = "y". "Y" is not a valid base. This is position 546 in the 603 letter sequence for ALS Bb JX867374.1 where it is a "C".
Aside from the CDC error in their sequence, their percentages are correct if one ignores this letter position. The CDC paper should be corrected. They are a 100% match at 602/602, not 603/603. This shows sloppiness by the CDC but isn't terribly relevant.
I checked the garinii isolates to see if any of the errors indicated in the CDC table were in the same position. Every error in the garinii isolates appeared random. They all appeared in random positions and letters. I was wondering if they clustered or were random. Random suggests possible sequencing errors while any clusters might imply a unique sequence that simply varied by one letter.
So there is a troubling match and near matches between the ALS isolates and the ATCC provided B. burgdorferi sensu stricto strain 297 (ATCC 53899), B. afzelii strain BO23 (11) (ATCC76 51992), and B. garinii strain Fuji P1 (11) (ATCC 51991).
Since garinii has not been found in US patients nor ticks except seabirds, its troubling that 27 of the ALS isolates were garinii. This implies either Borrelia garinii has been missed in the US for over 25 years of research or these people were infected outside the US where garinii is found.
It is even more troubling that 20 of these have the exact same 603 letter partial pyrG and the other 7 are quite close and appear as random sequencing errors.
It is further troubling that the ATCC acquired garinii strain Fuji P1 (ATCC 51991) also has the same partial pyrG gene sequence.
It should be noted that the garinii do also match 2 existing garinii strains from japan and Russia. Not Europe.
I believe ALS needs to explain why a Eurasian garinii strain was found in their study and why they all so closely match and why they also closely match the test ATCC acquired garinii strain Fuji P1 (ATCC 51991).
I believe this will be difficult to explain unless these people all traveled to Eurasia. Even then it will require follow up studies to truly validate the culture.
The results from the Borrelia burgdorferi are not as clear cut. There are a number of US strains that match the isolates. The match to the test strain is unfortunate.
The azfelii result is also not as troubling. Someone in the study might have picked this up outside the US. The match to the test strain is unfortunate.
The second azfelii looks odd. The nearest azfelii in the NCBI database is a 584/603 match. This is quite distant and does suggest the sequence may have come from a mixed DNA error. Its unclear at best. It would seem odd that no existing NCBI database azfelii strain was even close.
I'm sorry and not happy to report this as I have been a supporter of the ALS culture and hoped it would be shown to be valid. I am not pro-IDSA or CDC. I have been cultured 3 times positive. I would prefer to learn the culture is valid and confirms my positive serology and would be useful to confirm successful treatment and the end of my infection. This is why cultures are the Gold standard. I also want to know the truth. Invalidating this culture study does not mean anything except just that. Lets hope the follow up studies show the culture is good.
If it turns out this study suffered from contamination, it doesn't mean the culture is invalid. It means the study is invalid. I hope the follow up studies are able to validate the culture.
BTW: I'm not Ed but its fun getting Lisa all fired up. I'm actually on your side but prefer the truth over dogma. Who is Ed? Anybody want to share the story since I'm fairly new! Posts: 15 | From CA | Registered: Aug 2013 | IP: Logged | Report this post to a Moderator
Posted by Razzle (Member # 30398) on :
I think it was Dr. MacDonald who said European strains are found in Central and South America...so it would make sense to me that they could also be found here...
Posted by Robin123 (Member # 9197) on :
I don't know whether anyone has done a study of what strains are in the US? Personally, I agree, Elena - anything could be here.
Northern Lights, also interested in hearing the info about testing for miyamotoi, since here everyone thinks it can't be tested for yet.
Could you discuss further your statement that IGeneX isn't good for catching European strains? I asked that very question of IGeneX and was told they can catch Lyme from all over the world.
Posted by n.northernlights (Member # 17934) on :
*************************************************** C. Ben Beard, Ph.D. Chief, Bacterial Diseases Branch Division of Vector-Borne Diseases CDC Mail Stop P-02 3156 Rampart Road Fort Collins, CO 80521 USA
From: alan macdonald [mailto:[email protected]] Sent: Monday, August 26, 2013 5:05 PM To: Beard, Charles B. (CDC/OID/NCEZID) Subject: Request for documents under the freedom of information act
Dear Dr. Beard,
As the official CDC spokesperson for all communications relating to Lyme borReliosis from US Citizens:
I respectfully request that you provIdE me with any and all communications which were received by the CDC from :
1.State Public Health Officials 2. PHYSICIANS 3. Scientists with US Governmental funding for Lyme Borreliosis Research 4. Federal Employees 5. Members of the U.s. Congress and the U.S. Senate
In connection with allegations that flawed Medical Diagnostic services were rendered to the public by Advanced Laboratories, a fully licensed and fully compliant medical diagnostic facility under the Statues of Pennsylvania.
Under the Freedom Of Information Act, I am requesting documentation for the allegations of .....Bad Laboratory Medical diagnostic Practices .....(SIC) by Advanced Diagnostic Laboratories, as is presentED in the CDC Sanctioned publication in Journal of Clinical Microbiology 2013, "Assessment of New Culture Method to Detect Borrelia species in Serum of Lyme Disease Patients", 2013, 14 August, e Pub ahead of print J.Clin. Microbiology, doi:10.1128/JCM.01674-13, authored by "Barbara J. B.Johnson, Mark A. Pilgard, and Theresa M Russell" "Division of Vector-Borne Diseases, Centers for Disease Control and Prevention, Ft. Collin, Co, USA"
Direct quotationS from the published manuscript of Johnson et al as captioned above: {Begin Quote]
" The Centers for Disease Control and Prevention has received numerous inquiries From national and state health departments and clinicians about the performance of this culture method since Advanced Laboratory Services began offering it in 2012 [http://www.advanced-lab.com/spirochete.php ].." End quote] { manuscript submission line 64-67]
Further: Johnson et. al. state in their published manuscript:
[Line 151-152] Begin quote "The methods used by Sapi et. al. to assess test specificity were inadequate to rule out false positivity by culture of Laboratory strains of PCR amplicons" [Line 195-204}
" ...taken together ,our data and those of Sapi et.al. indicate that laboratory contamination was the probable source of the Borrelia DNA found in the patient specimens. The vast majority of patient pyrG sequences (41/51) are indistinguishable from laboratory strains used by the investigators. the clinical relevance of the of the pygR sequences (10/51) is unclear; these findings may also be consistent with laboratory contamination. Before use in Clinical medicine, novel findings must be independently verified. Independent verification is particularly critical when claims are at odds with a large body of other scientific work, and when they may trigger unnecessary antibiotic treatment of patients. We caution clinicians and patients to wait for independent verification by scientifically sound methods before using this culture service for diagnostic services" End quote
The contamination scenario described by Johnson and CDC employees is IMPOSSIBLE. because the Live Control ATCC strains used to validate the acceptability of a modified BSK Media were all done in the West Haven research laboratory . Advanced Laboratories of Philadelphia and were NEvER in possession of live Control borrelia. Summation: TWO geographially separated Laboratories - in a joint scientific Study - No Cross contamination between the two laboratories.
This single fact Negates the Entire content of the Johnson et al CDC authored J. Clin. Microbiology publication.
I have already notified Dr. Thomas Frieden CDC Director of these facts. I have received no response from Dr Frieden as of this date.
The Johnson et al publication must be officially Retracted. It is Factually Flawed.
It leads the reader to believe that CDC deposits to GenBank were published in advance of the J. Clin Microbiology article so that Impartial and highly vetted expert outside reviewers could analyze .the content of DNA sequences { generated by CDC scientists in Ft Collins, Co,}
[ KF 170280, KF 170281, KF 170282 ] with and use Clustal analysis and BLASTn analysis to compare these with GenBank accepted and published deposits ofborrel Isolates from humans Subject: CDC abuse of Power - OpEdto the Washington Post
Summary: CDC Misuse of Power ------------------------------------------------------------------------------------------------------------------------------------ A crucial ERROR in the CDC paper doi:10.1128/JCM.01674-13 was the CDC assumption that CONTAMINATION of patient blood specimens for analysis resulted in false reports of the Lyme disease spirochete in 51 patients. Dr. Eva Sapi in her Research Laboratory at the University of New Haven possessed Living reference type Lyme spirochetes. In Philadelphia, Penn, at the Advanced Laboratories where all blood cultures were done, the CDC contamination story was Impossible, because none of the alleged contaminants existed there. The Only living borrelia in the Advanced Laboratories building were PRIMARY [New} { Unique} isolations of Borrelia from Human blood. { A major step forward in the efforts to improve Testing for Lyme Disease} The full power of the CDC is vast. The CDC did not Fact Check the details before releasing their paper. Abuse of power is clearly in play here, to the detriment of public health. [ 149 words] ------------------------------------------------------------------------------------------------------------------------------------------
Respectfully submitted, Alan B. MacDonald, MD, FCAP FASCP
Posted by Eight Legs Bad (Member # 13680) on :
Thanks, Northern Lights.
I would however advise CAUTION in anyone going to LymeNetEurope (LNE)from their home computer, as I think there is a risk they could find themselves hacked.
Those of you who were present on the original thread where McSweegan as "LHCTom" tried to deceive us by posing as a patient "troubled" by the CDC paper falsely accusing Dr Sapi of contaminating her cultures, may have noticed that when people became suspicious, he tried to save his credibility by referring us all to his posts at LNE, where he had been playing the same game.
He hoped we would consider him genuine, if we saw he had many posts there in apparent opposition to those openly promoting Denialism there (which of course, are the founders of LNE, ie himself and his handful of wretched cronies).
LNE is a PHONY Lyme patients' forum, albeit with many good and genuine participants. LNE was DELIBERATELY CREATED to confuse the Lyme movement, to attack and denigrate our doctors in an arena that appeared, superficially at least, to be a patients' forum, to spy and hack people, and to disseminate false information on Lyme Disease on behalf of agencies like CDC.
Elena
Posted by Abxnomore (Member # 18936) on :
Agreed, best to stay off of that site. It's not what it appears to be.
Posted by n.northernlights (Member # 17934) on :
I found that place depressing and rarely went there. What was a little intereesting is that he amongst all his personas used the same as here recently, lchtom or whatever. He can have an endless amount of accounts there.
------
[ 09-02-2013, 10:06 AM: Message edited by: n.northernlights ]
Posted by Razzle (Member # 30398) on :
I just got an email this morning about an update on a petition calling for an investigation of the CDC, IDSA & ALDF:
"It’s all about the VACCINE
It has become blatantly obvious that the CDC will go to great lengths to insure that Lyme disease remains within its narrow definition in order to fit the vaccine model. Chronic Lyme does not fit any vaccine model.
The CDC has long known about the virulence and persistence of this spirochete focusing on a vaccine as the cure-all to this world wide epidemic. The late stage/chronic Lyme community has become collateral damage for a vaccine market in the course of a government sponsored initiative as Baxter’s phase III clinical trials are underway."
Posted by GretaM (Member # 40917) on :
I don't wish to seem paranoid, but since the thing went down, I have been having a heck of a time logging onto lymenet.
I keep getting this page that tells me to email the webmaster. Which I haven't done, obviously.
And in my posts, when I type 'them' it comes up 'you'. (although this could be lyme brain)
Just seems weird is all.
Anyone else have these difficulties?
Posted by Lymetoo (Member # 743) on :
Lymenet was temporarily down last night. (or was it the night before?)
Any troll can have an endless number of accounts HERE as well. We all have to keep watch.
Posted by GretaM (Member # 40917) on :
Lymetoo-OK, that's a relief! So I was getting paranoid...haha
Posted by Lymetoo (Member # 743) on :
Posted by susank (Member # 22150) on :
I rarely look at LNE - if I do - it is to read what Dr McDonald has written/provided.
IIRC I saw a post of his there from Jan of this year? - showing photos of the spirochetes grown in the culture - 9 of 72 positives as of that time. Thought that was interesting - 72 positives as of some point.
I compared my copy of the little green "cheetos" to the nine shown - mine though was not one of them.
I have not seen ChuckG post here recently - but appears he posts at LNE. I always thought he was quite helpful here - wonder how he got mixed up with the LNE'ers. And truly, why would Dr McDonald even bother to be there? That would be like repeatedly beating one's head against the wall. He is above that/them.
Posted by Lymetoo (Member # 743) on :
Maybe to counter all their &^%$.
Posted by Eight Legs Bad (Member # 13680) on :
Greta, have you been able to solve the mystery as to why your typed word "them" turned into the word "you"? Some Lyme patients do have neurologically-caused word-finding and spelling difficulties, others don't.
Do you suffer from this type of problem when typing as a rule? Has it ever happened to you before?
Does anyone else use your computer? Sometimes people create "macro" keys, where one key (eg the "t" key) is programmed to produce a word they intend to type frequently. That might be an innocent explanation for this.
As for more sinister goings-on, I can tell you for a fact that McSweegan has a long history of interfering with computers of those he considers a threat. He has done this not only to patients but also to some of our good doctors.
At the present, an overgrown juvenile delinquent whose behaviour bears a striking resemblance to McSweegan's has tampered with my email, social media and Medscape accounts.
He has sent me messages that appear to be quite threatening.
He tampered with my link to the LymeNet discussion here in which he confessed that he had pretended to be a patient called LHCTom for a year, such that the link no longer worked.
He's a fool - these tactics will only MULTIPLY the growing impression that CDC are guilty of FRAUD.
Elena ps I noticed he seems to have restored my Medscape comment very hastily since I mentioned that this type of tampering should be flagged up to the Senate Oversight committee on CDC to which Dr Macdonald referred.
Alternatively, it may just be that the good moderators at Medscape discovered the tampering and remedied it. This happened to several of us recently on Medscape when we tried to post on the Borrelia-Alzheimer's link.
Elena
quote:Originally posted by GretaM: I don't wish to seem paranoid, but since the thing went down, I have been having a heck of a time logging onto lymenet.
I keep getting this page that tells me to email the webmaster. Which I haven't done, obviously.
And in my posts, when I type 'them' it comes up 'you'. (although this could be lyme brain)
Just seems weird is all.
Anyone else have these difficulties?
Posted by Eight Legs Bad (Member # 13680) on :
Lymetoo is right. IMO McSweegan is undoubtedly still here.
When I have time, I will post a list of tips which I hope will be helpful in spotting Denialist spies and agents provocateurs.
Lymetoo, I noticed the LymeNet server went down several days ago too, around the time that McSweegan was smoked out. I think many of you Americans may have been asleep at the time, but I'm in a different time zone to you.
Are you able to tell us as Moderator, whether these were just technical hitches, or if something more sinister happened? Thanks for your help.
Elena
quote:Originally posted by Lymetoo: Lymenet was temporarily down last night. (or was it the night before?)
Any troll can have an endless number of accounts HERE as well. We all have to keep watch.
Posted by Eight Legs Bad (Member # 13680) on :
Miyamotoi, I'm glad you've chosen that name. It serves to remind us that Borrelia miyamotoi, present in the USA in the same ticks as Lyme, and capable of causing a severe Lyme-like illness as well as more classic "relapsing fever" symptoms, was originally discovered in Japan.
CDC (and McSweegan) argue that Dr Sapi could not possibly have found "Eurasian" and "Japanese" garinii in American ticks.
Why not? If Japanese Borrelia miyamotoi is in Ixodes ticks in US, why not other "Japanese" borreliae?
Elena
quote:Originally posted by miyamotoi: Tim
Could you explain why IGenex is considered better?
Is there any concern that the culture had so many non-US strains or are they species? Why would that happen?
What about the CD57? What does it mean? Are there any other good alternatives if one comes up negative on the Igenex and or culture?
Are there any other good labs - I read Stony Brook was ok.
Is there any way to get the European versions of the Western Blot in the US?
What if one actually has one of the non-burgdorferi strains missed here?
I read miyamotoi and others is missed by the Western Blot - is that true at IGenex also?
thanks in advance for any help!
miyamotoi
Posted by sixgoofykids (Member # 11141) on :
quote:Originally posted by Eight Legs Bad:
Are you able to tell us as Moderator, whether these were just technical hitches, or if something more sinister happened? Thanks for your help.
Elena
We don't have that ability as moderators. All we can do is edit posts in the same way you do (except we can edit everyone's) and move posts.
Only the webmaster can tell that kind of thing. I haven't heard anything. I think he would let us know if something sinister was going on.
Posted by n.northernlights (Member # 17934) on :
on tampering, today at one time all my e´s turned into ä `s and I have to press both the ¨and the a to get a ä, which is used in swedish and german, so it is impossible to have hit the neighbor key and mistakenly hit ä....weird
Posted by miyamotoi (Member # 41833) on :
I have read that Borrelia Bissettii has also been found by Dr Lane of UCB in patients in Mendocino California.
quote: CDPH has been doing surveillance for B. miyamotoi in ticks since 2000. Approximately half of adult ticks testing positive for Borrelia were positive for B. burgdorferi sensu lato and half have been positive for B. miyamotoi. Nymphs tested show a 2.5x higher prevalence infection of B. burgdorferi sensu lato than for B. miyamotoi.
So if the standard test is based on the B31 strain and is sensitive to strain and does not catch other species, how does one know if one has a non-Bb species like miyamotoi or bissettii?
I also read a study from Europe that found the C6 peptide test can catch all 3 European species at 88% while the US B31 was a miserable 51%. The paper claimed the C6 had 100% specificity meaning it had no false positives in this study.
So couldn't people in the US try the IGenex C6 if they come up negative on the standard test but have some suspicious antibodies? That is what I did and it came up positive. My doctor confirmed it by sending out for a Stony Brook repeat C6 and it too came back positive. It seems in the absence of a real bissettii or miyamotoi test, the C6 seems the only practical alternative besides the culture that has a chance of being believed.
Posted by Eight Legs Bad (Member # 13680) on :
Good afternoon Mr Miyamotoi,
You know, when you first joined us on 30 August 2013, and said:
""posted 30 August, 2013 07:14 PM Profile for miyamotoi Send New Private Message Edit/Delete Post Reply With Quote What are the best tests to confirm Lyme? I've hear horror stories about the ELISA and Western Blot and what does this CDC thing mean for the culture? Any advice appreciated. "
... I actually thought you were a newbie who was just beginning to learn about Lyme!
I see that in fact you actually are very very familiar with Lyme issues, and even know about Borrelia strains like B. bissettii which are somehwat obscure and which many long-time patients may not be aware of.
So I am surprised that an experienced person like you would make up your mind so quickly in just a couple of days, and decide that the NIH and CDC are giving us good advice, and the C6 elisa is a good Lyme test.
I think you may have been unduly INFLUENCED by the lies recently told here by Dr McSweegan. Do you know of him?
He came here under the guise of a fictitious "patient" called LHCTom, pretending to be "on our side" , wanting to warn us that the CDC were right in their fraudulent condemnation of Dr Sapi's excellent culture test, and urging us all to use the C6 elisa test instead.
I have covered this issue in detail already, but here's a snippet from the LymeNet discussion before LHCTom fled:
LymeNet Contributor Member # 13680
Icon 1 posted 25 August, 2013 11:36 AM Profile for Eight Legs Bad Author's Homepage Send New Private Message Edit/Delete Post Monster (LHCTom/Ed),
Stop misrepresenting me. I clearly stated that my info was from as ILADS presentation by Dr Nick Harris, not from any other site.
Anyway, let's look at the quote YOU yourself have posted. It includes this information:
"In a set of 30 patients with late Lyme disease, all having CDC-positive IgG and IgM Western Blots, the C6 ELISA was positive in ONLY 10% OF THE PATIENTS. It is NOT A GOOD TEST FOR LATE-STAGE Lyme disease."
(my capitalisation)
Look at your membership number, Mr "LHCTom" aka Monster from the NIH. It is Number 41,709. Now, as you have just joined Lyme Net the other day, we know that it is a very recent number. In other words, this group has over 40 000 members.
Do you not comprehend that the VAST MAJORITY of those 40 000 plus people are here because of the issue of "late-stage" (or rather, CHRONIC) Lyme?
And this is just ONE, mostly US-based, group. Do you have any idea how many people are out there in the world, who have had to join groups like this one, because their CHRONIC Lyme is not recognised?
Do you think there was a Worldwide Lyme Protest, for the first time ever, because of something other than CHRONIC Lyme being ignored?
And then you recommend to us a test which you imply Igenex are RECOMMENDING, which is only TEN PERCENT SENSITIVE for chronic Lyme?
Are you out of your tiny mind?
Igenex offered the test not long after it first came out, in 2003. I believe the study they refer to, which was 73% positive in finding VERY EARLY Lyme cases which were also CDC blot-positive, is from 2003.
Actually, as YOU KNOW WELL as you are a scientist yourself, 73% sensitivity is a pretty lousy figure.
My reference from Dr Harris is a lot more recent than yours.
The Americans are unfamiliar with the C6 Elisa, as I gather it's not widely in use in USA. And you are trying to con them into thinking that it's a good and sensitive test.
If you have chronic Lyme, it might just pick it up. But it is FAR MORE LIKELY not to, and then you will have an official, FDA-endorsed BIG FAT NEGATIVE on your medical notes that will just prejudice doctors even more against you.
ALL Antibody tests are useless in Lyme, because of the myriad ways in which Lyme dysregulates and suppresses parts of the immune system.
We need antigen-based tests, and GOLD standard tests like blood culture for chronic Lyme, such as Dr Sapi and her colleagues worked hard to produce, and the Monster and CDC are working hard right now, to discredit.
Elena
quote:Originally posted by lhctom: Below is the actual quote by Nick Harris from IGenex.
Lisa aka Elena, would have you believe the test is 10% sensitive. But she is conveniently leaving off most of what Nick Harris actually said. The test has been shown to be 75-90% (other studies have shown 96%) except late stage infections where a small study at IGenex showed only 10%. Since this is the only other test offered in the US that is recognized by ID doctors, if you want to get a diagnosis that is believed, the C6 is one way to try. Its very dishonest to partially quote someone or a study just to give the impression you want. We all know this is exactly what the IDSA does. So isn't this the same? Lisa, Elena or whoever she is is giving out information intentionally altered ..."
quote:Originally posted by miyamotoi: I have read that Borrelia Bissettii has also been found by Dr Lane of UCB in patients in Mendocino California.
quote: CDPH has been doing surveillance for B. miyamotoi in ticks since 2000. Approximately half of adult ticks testing positive for Borrelia were positive for B. burgdorferi sensu lato and half have been positive for B. miyamotoi. Nymphs tested show a 2.5x higher prevalence infection of B. burgdorferi sensu lato than for B. miyamotoi.
So if the standard test is based on the B31 strain and is sensitive to strain and does not catch other species, how does one know if one has a non-Bb species like miyamotoi or bissettii?
I also read a study from Europe that found the C6 peptide test can catch all 3 European species at 88% while the US B31 was a miserable 51%. The paper claimed the C6 had 100% specificity meaning it had no false positives in this study.
So couldn't people in the US try the IGenex C6 if they come up negative on the standard test but have some suspicious antibodies? That is what I did and it came up positive. My doctor confirmed it by sending out for a Stony Brook repeat C6 and it too came back positive. It seems in the absence of a real bissettii or miyamotoi test, the C6 seems the only practical alternative besides the culture that has a chance of being believed.
quote:Originally posted by miyamotoi: I have read that Borrelia Bissettii has also been found by Dr Lane of UCB in patients in Mendocino California.
quote: CDPH has been doing surveillance for B. miyamotoi in ticks since 2000. Approximately half of adult ticks testing positive for Borrelia were positive for B. burgdorferi sensu lato and half have been positive for B. miyamotoi. Nymphs tested show a 2.5x higher prevalence infection of B. burgdorferi sensu lato than for B. miyamotoi.
So if the standard test is based on the B31 strain and is sensitive to strain and does not catch other species, how does one know if one has a non-Bb species like miyamotoi or bissettii?
I also read a study from Europe that found the C6 peptide test can catch all 3 European species at 88% while the US B31 was a miserable 51%. The paper claimed the C6 had 100% specificity meaning it had no false positives in this study.
So couldn't people in the US try the IGenex C6 if they come up negative on the standard test but have some suspicious antibodies? That is what I did and it came up positive. My doctor confirmed it by sending out for a Stony Brook repeat C6 and it too came back positive. It seems in the absence of a real bissettii or miyamotoi test, the C6 seems the only practical alternative besides the culture that has a chance of being believed.
Posted by Eight Legs Bad (Member # 13680) on :
Mr. Miyamotoi,
I should have clarified. The reason I think you have allowed yourself to be unduly influenced by Dr Edward McSweegan's disinformation activities here on LymeNet, and in particular the lies he told us about the C6 elisa,is because you have ended up using the exact same phrasing he used ie:
"if you want to get a diagnosis that is believed"
In future, I advise you to be more cautious about what sources of "information" you believe. Dr McSweegan is the Denialists' Internet Lyme Disease Disinformation Officer-in-Chief.
as for a diagnosis that can be "believed" - we know the public health agencies will continue to do everything in their power to make sure we are not "believed" - regardless of which test we use.
The goal is not to hope and pray that we will be "believed". The goal is to expose and bring down the Denial, and replace the Denialists with officers who genuinely want to do the job they were employed to do:
PROTECT PUBLIC HEALTH!!!!!
Then our worries about being "believed" will be over.
Elena
Posted by lax mom (Member # 38743) on :
"So couldn't people in the US try the IGenex C6 if they come up negative on the standard test but have some suspicious antibodies?"
Well, my immune system is shot (in the words of my ID dr) "for some unknown reason, probably stress" (proven by sepsis with no immune system activation to fight it off), so it's not making antibodies to anything.
Since the C6 Elisa and Western Blot are all negative, I guess that means I'm healthy as a horse then.
Posted by lax mom (Member # 38743) on :
To the government employees and Drs who know the deal with Lyme in our country and come on this site full of sick people and feel it's ok to pretend to also be sick:
I am not a conspiracy theorist, never have been. I am just a mom whose 2 kids need me alive. Please stop this craziness and nonsense. People are dying. I almost died. My husband almost died. My son had lyme induced autism. This could happen in your own family.
If something doesn't change, it will happen to your family too.
Unless you are ok knowing people are dying on your watch, then stop it. Someone somewhere has got to have the courage to be honest. We all only get one life. At the end of that life, are you going to be ok knowing peoples' lives could have been saved had you spoken up? The truth will come out eventually.
[ 09-05-2013, 06:35 PM: Message edited by: lax mom ]
Posted by GretaM (Member # 40917) on :
Laxmom-i agree with what you say exactly.
I pray everyday for someone in one of the disease centers in north America to do the morale thing and whistleblow.
I think they are spineless and needed to grow a set to speak out, but now I wonder if they are between a rock and a hard place as well.
I don't believe in conspiracies either but I wonder...
What if there IS a cure. But at the CDC they're told it's for national security to keep the cure hidden.
What if the people at the disease centers in north America are being threatened to keep quiet about lyme and co?
It doesn't make it right and I've probably just watched too many Hollywood movies, but it is incredible difficult for me to imagine any situation where one person would CHOOSE to humiliate and demean people infected with lyme.
Aren't we suffering enough? I certainly feel like I can't take much more. Not only am I in pain constantly, losing my memory and losing my vision, but because of the misinformation from the disease centers, I don't have the support of my peers or family either.
So to be on this forum with impostors is like kicking me while I'm already down.
It is hard to wrap my musshy brain around the fact that there may be people that EVIL in positions where they are supposed to be helping people.
It makes me sick and ashamed to be part of the human race, if this is what we do to each other.
Just sickens me.
Posted by lax mom (Member # 38743) on :
Greta: I think at this point someone could realize that they need to mitigate the damages.
Impersonating a sick person just goes beyond the pale. It's an us vs. them mentality that does not belong in a medical discussion. This isn't a game. People are dying.
I was thinking this afternoon. The Tuskeegee experiments were using syphillis. Now, it's Lyme. What's the deal with playing around with spirochetes?
When I had surgery (well, an ERCP with sphincterotomy and some biopsies) 2 weeks ago, it was in a major University's cancer center. I was shocked at how beautiful the center was. It was all meant to soothe the senses of the cancer patient to help them heal.
Then when I had the surgery, everyone was so supportive and helpful. I couldn't help but contrast that with how we all are treated with Lyme...as panhandlers on the medical community's street so to speak.
Posted by lymeboy (Member # 24769) on :
Sad. This man sounds like more of a troll than a "Dr." It's odd to me that a "Dr.", who spent so many years learning and training how to help people would spend so much time and energy as a weasely keyboard troll. He should try Reddit... He'd find millions just like him. There must be some reason this guy and others like him want us all shut up....hmmm. What could it be? Stop calling yourself a doctor, or try being one. You might like yourself for it.
Posted by n.northernlights (Member # 17934) on :
this happens in sweden and norway too, two very lout doctors blogging and giving interviews, telling the press that chronic or persistant lyme is imaginary and getting doctors that prescribe antibiotics shut down.
Strange enough they are involved in vaccines, like pandemrix , and the other one is very much for ritalin (ADHD drug) They blog and twitter awful things! Just like trolls.
Also, the LymenetEurope connection makes total sense now. I had been to those forums numerous times and couldn't figure out where the anger was coming from and why they hated Lymenet so much. NOW I get it. Jeez what sad human beings. Too bad they are sitting where they are.
Posted by GretaM (Member # 40917) on :
I agree, laxmom.
What is it with the freaking spirochete experiments!
Geesh!
And also agree with the panhandling comment.
My old doc, who looked at me with concern when she thought I had lupus, did a 180 and looked at me with disgust when I mentioned lyme.
"oh Greta, you don't want to be labelled as one of THOSE people" she said.
She looked at me like I was something she just scraped from the bottom of her shoe.
Aside from locale, how is alienation of lyme patients any different than leper colonies back in the day. So we're the non-living living, walking amongst the living.
Posted by Eight Legs Bad (Member # 13680) on :
Lymeboy, Mcsweegan is not a medical doctor. The "Dr" title is because he has a PhD. He is a biowarfare scientist, microbiologist and parasitologist.
However, he WAS trying to give medical advice as the fake patient "LHCTom", and to find out private info about patients' health - which is why Dr Macdonald asked him which medical school he graduated from.
All this can and MUST be exposed - so all those of you who were here before he deleted his posts , please SAVE copies in both electronic and hard copy form.
They could be submitted to the Senate Oversight committee on CDC along with the other evidence of criminal tactics to discredit the new culture test offered by Advanced Labs.
Elena
quote:Originally posted by lymeboy: Sad. This man sounds like more of a troll than a "Dr." It's odd to me that a "Dr.", who spent so many years learning and training how to help people would spend so much time and energy as a weasely keyboard troll. He should try Reddit... He'd find millions just like him. There must be some reason this guy and others like him want us all shut up....hmmm. What could it be? Stop calling yourself a doctor, or try being one. You might like yourself for it.
Posted by Eight Legs Bad (Member # 13680) on :
Greta,
There could well be a cure, and they could be sitting on it.
No rational person can look at all the facts of this coverup and see how it could serve the purpose of "National Security".
McSweegan, Baker, Barbour, Steere, Klempner, etc etc undoubtedly have a very broad definition of "national security" which amounts to this:
"If the US public and the world finds out what a bunch of negligent morons have been working in the field of WMD, and how our negligence has given rise to such a horrendous epidemic, they will lose confidence in DOD and the public health apparatus and that would endanger the American people.
It's absurd.
Ken Alibek, the leading Soviet biowar scientist who defected to the US, once said that the US, unlike USSR, only worked on agents for which they had either an effective vaccine, or a cure.
A good vaccine is unlikely for a bug that practises so many antigenic tricks as borrelia.
So if Alibek is telling the truth, they may well be sitting on cures.
At the very least they are stopping all decent and humane scientists from discovering cures by telling them chronic Lyme does not exist. Elena
quote:Originally posted by GretaM: Laxmom-i agree with what you say exactly.
I pray everyday for someone in one of the disease centers in north America to do the morale thing and whistleblow.
I think they are spineless and needed to grow a set to speak out, but now I wonder if they are between a rock and a hard place as well.
I don't believe in conspiracies either but I wonder...
What if there IS a cure. But at the CDC they're told it's for national security to keep the cure hidden.
What if the people at the disease centers in north America are being threatened to keep quiet about lyme and co?
It doesn't make it right and I've probably just watched too many Hollywood movies, but it is incredible difficult for me to imagine any situation where one person would CHOOSE to humiliate and demean people infected with lyme.
Aren't we suffering enough? I certainly feel like I can't take much more. Not only am I in pain constantly, losing my memory and losing my vision, but because of the misinformation from the disease centers, I don't have the support of my peers or family either.
So to be on this forum with impostors is like kicking me while I'm already down.
It is hard to wrap my musshy brain around the fact that there may be people that EVIL in positions where they are supposed to be helping people.
It makes me sick and ashamed to be part of the human race, if this is what we do to each other.
Just sickens me.
Posted by Eight Legs Bad (Member # 13680) on :
Yes, I'm sorry Susank advised people to go there. Two people here are now reporting computer problems. I have no doubt that LNE is use to hack people as well as many other nefarious purposes.
Elena
quote:Originally posted by lymeboy: Also, the LymenetEurope connection makes total sense now. I had been to those forums numerous times and couldn't figure out where the anger was coming from and why they hated Lymenet so much. NOW I get it. Jeez what sad human beings. Too bad they are sitting where they are.
Posted by Eight Legs Bad (Member # 13680) on :
Bakken is one of the authors of the useless IDSA Lyme guidelines that have hurt patients around the world.
Elena
quote:Originally posted by n.northernlights: this happens in sweden and norway too, two very lout doctors blogging and giving interviews, telling the press that chronic or persistant lyme is imaginary and getting doctors that prescribe antibiotics shut down.
Strange enough they are involved in vaccines, like pandemrix , and the other one is very much for ritalin (ADHD drug) They blog and twitter awful things! Just like trolls.
Greta, you have raised some very important issues in your post.
Can the Denialists whistleblow? Are they spineless, or is it too dangerous for them? Have they been threatened, or are they just psychopaths who enjoy hurting millions of people?
I think the answer is very complex. There are a range of people involved, who each find themselves in different circumstances.
A very high-up person in British politics told me that at the top levels of government here, they are fully aware that there is a Lyme cover-up, but they are afraid to speak out for fear of "losing their pensions".
To me, that is no excuse, and is a sordid disgrace. After all, these are people whose pensions allow them to live fantastically luxurious lifestyles. Even if they lost those pensions by having their positions in govt removed under false pretext, no one could take away the basic state pension, which is pretty low, but is what milllions of pensioners in this country have to live on anyway.
So rather than live like millions of other elderly people in Britian, they would prefer to keep their mouths shut, let millions of people suffer (and an unknown proportion of that figure die),just so they can maintain their decadent greedy lifestyles.
Ihave no sympathy for people like that.
Then there are others, scientists, health officials etc, who ar not DIRECTLY involved in the coverup, but nevertheless have been made to feel they should not speak out or complain if their work is denied publication because it confirms the existence of chronic Lyme, the link between Lyme and ALS/Motor neurone disease etc etc.
This is a much more complex question. Some may have been made to feel they or their families could suffer consequences. Others will just realise they will no longer receive research funding.
I dont believe there are tens of thousands in fear of their lives - some of these people CAN speak out, or at least refuse to be part of it anymore.
McSweegan, IMO is a psychopath, which is why he was a suitable recruit for biowarfare work in the first place.
The NIH scientist who was ordered to try and censor Under Our Skin's interview with Willy Burgdorfer, and to stop any discussion of persistence, did not want to do what he was ordered. He therefore did it badly! He miht be a brilliant scientist, but he turned out to be a lousy bouncer.
They find it hard to find enough people willing to do the hateful things they need done to us.
Down in Hell, the Devil has a staffing crisis, you see!!!
Elena
quote:Originally posted by GretaM: ...I pray everyday for someone in one of the disease centers in north America to do the morale thing and whistleblow.
I think they are spineless and needed to grow a set to speak out, but now I wonder if they are between a rock and a hard place as well.
I don't believe in conspiracies either but I wonder...
What if there IS a cure. But at the CDC they're told it's for national security to keep the cure hidden.
What if the people at the disease centers in north America are being threatened to keep quiet about lyme and co?
It doesn't make it right and I've probably just watched too many Hollywood movies, but it is incredible difficult for me to imagine any situation where one person would CHOOSE to humiliate and demean people infected with lyme.
....
It makes me sick and ashamed to be part of the human race, if this is what we do to each other.
Just sickens me.
Posted by lax mom (Member # 38743) on :
Well, eventually their own families will get infected.
Posted by Eight Legs Bad (Member # 13680) on :
Laxmom, this may not be the case. Their family members may have access to immediate diagnosis, instant curative treatment, or preventive measures that civilian medicine has no idea exist.
One example might be a tick repellent which performs far better than any we know of.
Also, a few of the Denialists, such as McSweegan, are true psychopaths in the medical sense, in my opinion. This means they do not care about ANYONE'S suffering - possibly not even their own families.
Elena
quote:Originally posted by lax mom: Well, eventually their own families will get infected.
Posted by lax mom (Member # 38743) on :
Wow. I was never a conspiracy theorist. I was quite naive.
Last night, when I couldn't sleep due to insomnia, I googled McSweegen. That will give you nightmares.
It makes sense. Why would you care if your family got Lyme if you have access to the "anti-venom" so to speak.
Posted by Abxnomore (Member # 18936) on :
That's why he had so much time to troll on Sci Med under several different monikers.
Posted by Abxnomore (Member # 18936) on :
That's why he had so much time to troll on Sci Med under several different monikers.
Posted by Eight Legs Bad (Member # 13680) on :
I think the "Man with no Work" story was probably deliberately put out in the media to provide a cover for the REAL WORK he has been doing since being transferred from his post as NIH Lyme Programme Officer.
His REAL JOB (still funded by NIH, at least partly) is Head of Online Covert Lyme Disease Disinformation Activities.
The job description is flexible and includes additional "offline" activities, such as personally stalking Lyme disease campaigners and researchers.
And at this job as Disinformation Officer he has been working VERY HARD, night and day, for years!
Elena
Posted by Eight Legs Bad (Member # 13680) on :
Would you all believe, McSweegan is STILL trying to fool people on other Lyme forums that he is a Lyme "patient" called LHCTom (Thomas Eames) even AFTER he confessed here on LymeNet that he was McSweegan!
The dialogue below is from the forum MDJunction:
Here is McSweegan commenting about himself, then pretending nt to be himself:
"A few days ago, Dr Edward McSweegan, formerly the NIH Lyme Programme Officer in the US, and author of many papers promoting the view that chronic, disabling persistent Lyme Disease does not exist, suddenly confessed on a Lyme Disease discussion forum that he had spent the last year PRETENDING to be a Lyme sufferer, using the false name and the internet moniker LHCTom.
I am not Edward McSweegan. I speak for myself."
He then wrote a long diatribe containing the same lies he wrote here before we blew his cover, plus some embelllishments and some new lies, even more farfetched than the previous ones.(see below)
He then panicked and deleted everything except the paragraph above stating he was not McSweegan.
Betty G, forum organiser at MDJunction then wrote this:
"so tom, If you're not McSweegan, why do you say exactly the same things he did, using the exact same moniker? bettyg"
And she restored the material he had deleted(caution, do not go to the LymeNet Europe link he included unless you are certain you have above-average anti-malware software on your pc):
"It appears the real Edward McSweegan may have reacted to the
negative
reactions to my culture posts. Its not possible to know if
he actually
made this post. I apologize for any confusion or difficulty
through every ALS isolate and compare it against both the
CDC sample and
then against all NCBI database Borrelia pyrG sequences
including full
sequences. I was not trying to show its 100% contamination
but that as
much as half appeared suspicious due to the 27 garinii which
is rare in
the US. I did confirm the CDC table was correct with the
exception of
the "y" substituted in their Bb 603 pyrG sequence.
The "y" and 602/603
match can be ignored for the purpose of contamination
likelihood. It was
just a dumb error by the CDC but irrelevant to the issue I
was
exploring.
There remains some mysteries. Alan reports that the
garinii species samples were geographically isolated. That
doesn't
change the 27 garinii found in the US with most identical
and matching
the CDC samples being a big problem. Even if they didn't
use garinii in
the lab, the 27 garinii that were almost all equal should
not happen.
The source of the garinii contamination must have either
found a way to
get to the other site or there was one garinii patient that
was the
source. These 2 labs most likely had people driving back and
forth
carrying various components of the culture. The garinii
FujiP2 must have
slipped between labs as it seems unlikely ( but possible) a
patient was
the source.
Another Mystery is why ALS did not realize finding
27 garinii isolates was a red flag. Its shown in their paper
in their
phylogenetic tree. This should have gotten their attention.
ALS also
says all isolates were identified with the Bb B31 monoclonal
antibody.
The garinii and azfelii should have failed the monoclonal
antibody test
but passed the polyclonal test. This should have been picked
up by the
polyclonal and that to should have raised a red flag. They
did say the
monoclonal antibody and ployclonal antibody tests worked
correctly. They
picked up the burgdorferi=monoclonal and
non-burgdorferi=polyclonal
correctly. Garinii in the US would have been a BIG
discovery. It should
have come with fanfare since the presence of European
strains in the US
is a controversial point. It happens occasionally but not
50% as in the
study. Many believe the serology tests for all three species
should be
available in the US. This discovery could have changed
that.
So the challenge to ALS is as follows:
Explain how 27 Eurasian garinii strains showed up in
patients distributed across the US and
Explain how 20 ( + 7 near identical) of these US rare
garinii isolates had identical pyrG partial sequences and
Explain how the majority of all samples were identical or
near identical to the 3 ATCC strains purchased for culture
testing
The odds of these genes being accidentally matched is
vanishingly small.
Nearby genes are more likely DNA sequencing errors than real
genetic drift when they are random.
A 603 sequence of 4 letters has 4 exp. 603 possible
combinations is more than the number of stars in the
universe.
Because of this, a Borrelia individual sharing an identical
pyrG sequence must share a recent common ancestor.
The
probability of a pyrG sequence drifting and then returning
to a value
is in the 1/billion odds after just 3 changes. They just
don't
accidentally match after evolution causes them to drift
away.
Because
of this, once they drift they never return - they further
diverge
rapidly. This is why these housekeeping genes make good
genotype
identifiers when combined with their uniform slow forward
mutations.
I'm
sad and unhappy to have to report this and don't enjoy
the negative
response to me. But I feel its important for all Lyme
sufferers to have
access to all sides of the science - something the CDC/NIH
and
mainstream medicine has concealed behind their dogmas.
Again, I apologize if anything I said was inappropriate. I
truly believe my analysis is correct. I am truly unhappy of
this.
Tom"
Good God, McSweegan is crazy! Dr Macdonald has already disproven all those lies he tells above, and clearly stated that there was no transfer of lab strains from Ct to Pennsylvania, yet McSweegan thinks he "knows" people took it back and forth by car.
Maybe Advanced Labs can sue him for libel? We have the proof he confessed he is "LHCTom".
They are simply showing how scared they are of Dr Sapi's culture test, as it will prove not just chronic Lyme, but likely prove the miltiplicity of species and strains infecting Ameicans.
Elena
Posted by lymeboy (Member # 24769) on :
This man is the troll to end all trolls.
Posted by Eight Legs Bad (Member # 13680) on :
It's interesting that reports are emerging to the effect that not everyone in CDC is willing to go along with Barbara Johnson's sabotage of the truth and false allegations against Dr. Sapi's culture test.
Elena
Posted by applewine (Member # 26220) on :
quote:Originally posted by Cold Feet: A reminder: test kits are based on ONE strain of the B31 Borrelia -- there are at least ONE-HUNDRED strains of Bb. Why isn't the CDC informing us of these germane facts?
Cold Feet,
The new test coming out this year will test directly for all strains of Bb. It will test for antigens and not the immune response as well and should work with all stage of infection. They will also be adding more outer surface proteins from Bb in 2015 as well as other tick infections.
This is the nanotrap antigen test developed by George Mason University in Virginia in partnership with Ceres Nano. It will also be FDA approved and should be reputable.
If people start testing positive on this test it will be very interesting. If we can confirm the cause of these symptoms and treatment isn't working then of course a new cure will have to be made as well.
We can't do any of that of course without a reputable and reliable test.
Posted by GretaM (Member # 40917) on :
I hope so.
It would be great to have a test where the "real numbers" of patients is indesputable.
Especially in Canada, where the BC CDC says there have only been just under 300 cases of lyme in BC.
Which is bologney.
And the survey they did, docs admit to under report, even with seropositive tests.
![[Smile]](smile.gif)