charles shepherd
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I see that the CDC website FAQs on Lyme Disease was updated on September 30th:
http://www.cdc.gov/lyme/faq/
http://www.cdc.gov/lyme/faq/
Lyme Disease: CDC FAQs
- Thread starter charles shepherd
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The CDC has been a tremendous disappointment for PWME. The most important research is being funded by Norway, a country of about 4 million people (just over 1/100th our population). I believe the CDC cut the meager ME budget down from 5.8 million last year to 0 this year. Thanks CDC...
charles shepherd
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Yes, I am aware of what the CDC says about ME/CFS!
But to go back to Lyme Disease, and Lyme Disease testing, we have a situation here that has some interesting parallels with XMRV testing when it first appeared in that:
A significant proportion of the patient community believes that the only way to get an accurate diagnosis of Lyme Disease is to use a commercial testing facility that most doctors, including infectious disease specialists, are sceptical about and believe produces far too many false positives
So to follow the parallel with XMRV, I think we need to bring together a group of clinicians and scientists that will include people whom the patient community trust in order to set up a validation study that will try to establish if the commercial tests are accurate and valid
You may have seen that we also have a situation here in the UK with a costly commercial test of mitochondrial function that is very popular with patients but not used by experts in muscle disease. The MEA is now funding an independent study which is assessing the value of this test.
MEA study assessing the value of the commercial mitochondrial function test: http://www.meassociation.org.uk/201...-further-mitochondrial-research-20-july-2015/
Well, if you are aware of how the CDC mishandles ME/CFS, why do you appear so eager to direct patients to its Lyme pages?
BTW, I do not agree with the XMRV testing comparison.
Regardless, I concur that validation of tests by agreed-upon researchers and clinicians and patients should be conducted for ALL current Lyme metrics. That includes the WB and C6, as well as PCR, by species, by geography, by strain (so not just B31), and by stage. The team would need to reflect the realities of contention: 1/3 IDSA members, 1/3 ILADS and 1/3 patients.
Sound fair?
BTW, I do not agree with the XMRV testing comparison.
Regardless, I concur that validation of tests by agreed-upon researchers and clinicians and patients should be conducted for ALL current Lyme metrics. That includes the WB and C6, as well as PCR, by species, by geography, by strain (so not just B31), and by stage. The team would need to reflect the realities of contention: 1/3 IDSA members, 1/3 ILADS and 1/3 patients.
Sound fair?
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charles shepherd
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I posted this information about the CDC updating their website entry on Lyme Disease because most (but not all) people on this forum are interested in following developments in relation to ME/CFS, Lyme Disease etc - even if they may not agree with what someone, or an organisation such as CDC, is saying
Regarding a high quality research study that would look at the validity of the commercial Lyme Disease tests I was thinking of the sort of group that was headed by Ian Lipkin in relation to XMRV.
My view is that there ought to be at least one patient representative involved but I don't agree that one third of this type of research group should be made up of patients.
The severity of symptoms is an integral - and, tragically, contentious - part of the Lyme wars. For this reason alone, Lyme sufferers deserve an equal stake. They bring to the efforts a perspective and legitimacy neither of the other two groups can. They've earned an equal seat at that table.
Is your concern that not enough qualified and knowledgeable Lyme suffers are available to join the panel? I am pretty certain this issue could be resolved.
Is your concern that not enough qualified and knowledgeable Lyme suffers are available to join the panel? I am pretty certain this issue could be resolved.
It´s also very different from the XMRV situation - there you had a pathogen that hadn´t been proven to cause disease in humans being implicated in ME because it had turned up in two or three labs. With Lyme you have a pathogen that is known to cause the same symptoms (that´s why it´s on the exclusionary criteria list!) turning up in ME patients across the world, using several different kinds of tests at several different labs.
Why should any patients be involved in the first place unless they have a scientific background? Having patients without the proper background could have several consequences. It might be easier to discredit any consensus as well as possibly lengthening the time it takes to reach it.
Patients are not necessarily scientists. However, patient input is always a plus.
Barb
@barbc56, over 300,000 individuals in the US alone contract Lyme each and every year. At least 10 to 20% of those continue to report unabated symptoms after treatment. . So over just the last five years, it is likely 300,000 or more Lyme patients whose treatments failed them have entered the scene. Push back that curtain 20 or 30 years, and how many symptomatic Lyme patients do you imagine are in circulation in the US alone? Add Canada and the UK and Germany and Norway and France and Sweden and China and...
Don't you think there are some qualified microbiologists and researchers and other related scientists/disciplines represented in that large and daily-expanding pool of Bb sufferers?
Add to that expertise, the expertise and insight peculiar to patients/victims, and you have a group whose proportionate inclusion in the research process should be not merely expected, but demanded.
Don't you think there are some qualified microbiologists and researchers and other related scientists/disciplines represented in that large and daily-expanding pool of Bb sufferers?
Add to that expertise, the expertise and insight peculiar to patients/victims, and you have a group whose proportionate inclusion in the research process should be not merely expected, but demanded.
I think Barb is just suggesting that patients w/o any science background shouldn't be defining health policy. I think patient input is always a good thing. Patients should be listened to and taken seriously, and hypotheses should be rigorously medically tested. Unfortunately that costs money, which is in short supply in ME, and requires doctors interested in treating it as a real illness, also in very short supply. I do not believe one need be a doctor to contribute to the progress of science. There are many examples of individuals w/o medical training making substantial contributions - but one must guard against non-scientific patient approaches.
I would not disagree with this. Well, maybe a little...
I do not have a science background. I'm not even all that good at Lyme science.
I know the politics of both major camps, though. I know what drives each. I know the biases and strengths and weaknesses. I am familiar with both the mercenary and legacy concerns inherent in each camp. And there are many like me.
What kind of role might a non-science patient assume? That of a watchdog or a referee.
But point taken. I readily concede patients admitted to the process should be qualified scientifically.
I do not have a science background. I'm not even all that good at Lyme science.
I know the politics of both major camps, though. I know what drives each. I know the biases and strengths and weaknesses. I am familiar with both the mercenary and legacy concerns inherent in each camp. And there are many like me.
What kind of role might a non-science patient assume? That of a watchdog or a referee.
But point taken. I readily concede patients admitted to the process should be qualified scientifically.
Antares in NYC
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The only thing that has changed is the tone, much more aggressive in the defense of their outdated thesis, and an outfront attack on IgeneX or any other testing center they did not sanction (coincidentally, they make money of the two tier Elisa/WB, as they hold the patents).
These revised FAQs reek of desperation, probably as a response to the flawless studies released in recent months by Dr. Kim Lewis and Dr. Zhang, which pretty much incontroversially prove that borrelia is resistant to most antibiotics and requires massive pulsed doses to truly eradicate it.
Their response is another round of vigorous propaganda. Nice to see where their priorities lie.
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In general a two tiered elisa/wb approach makes sense for many illnesses. For example, elisa has a better sensitivity than blot for HIV positivity. Blot has a better specificity than elisa. So first you test on elisa, and then reflex to blot to see if the positive is confirmed before you even report the results back to the patient. This both saves money (elisas are faster, simpler, and cheaper) and reduces false positives and false negatives. If the 2 tests do not agree, generally the blot is given precedence, unless the blot is rather weak/ambiguous.
I don't know enough to say whether the bands they are looking for are appropriate - but I would defend, in general, the appropriateness of the strategy of using an elisa with reflex to a blot.
Personally I still favor the theory that at least most cases of "chronic lyme" are actually a "post lyme" autoimmune syndrome. This may be a case of molecular mimicry akin to GBS. It could also be an inflammatory cascade or damage caused by a former Bb infection. I do believe there is a connection between Bb and some ME cases, or at the very least, that they look awfully similar in terms of symptoms. One paper I read suggested that certain HLA's increased risks of chronic/post lyme, and it related to how effective a person's immune system was in effectively responding to Bb. It turns out I have an HLA-DR which means I'd be particularly able to fight off Lyme - which might explain why my blots and elisas have all been negative (my doc checked it many times early on, and I had another one done recently to be sure - not one band on the blot was positive).
That doesn't mean no one else has that reaction. I'm convinced I do not have Lyme and my ME is caused by something else - in my case I believe the trigger was viral, but the infection was not persistent. I only point this out to show that not everyone with ME is Lyme related. I do think Lyme shows evidence of being one of many triggers for ME though - and once started it may not look much different, although it perhaps has some more prominent arthritic symptoms.
I don't know enough to say whether the bands they are looking for are appropriate - but I would defend, in general, the appropriateness of the strategy of using an elisa with reflex to a blot.
Personally I still favor the theory that at least most cases of "chronic lyme" are actually a "post lyme" autoimmune syndrome. This may be a case of molecular mimicry akin to GBS. It could also be an inflammatory cascade or damage caused by a former Bb infection. I do believe there is a connection between Bb and some ME cases, or at the very least, that they look awfully similar in terms of symptoms. One paper I read suggested that certain HLA's increased risks of chronic/post lyme, and it related to how effective a person's immune system was in effectively responding to Bb. It turns out I have an HLA-DR which means I'd be particularly able to fight off Lyme - which might explain why my blots and elisas have all been negative (my doc checked it many times early on, and I had another one done recently to be sure - not one band on the blot was positive).
That doesn't mean no one else has that reaction. I'm convinced I do not have Lyme and my ME is caused by something else - in my case I believe the trigger was viral, but the infection was not persistent. I only point this out to show that not everyone with ME is Lyme related. I do think Lyme shows evidence of being one of many triggers for ME though - and once started it may not look much different, although it perhaps has some more prominent arthritic symptoms.
Antares in NYC
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I don't discard that possibility, but at this point it's just a theory since it has not bee proven. Not once.
On the other hand there are over 270 peer-reviewed research studies showing persistent borrelia. Funny enough, a number of these studies come from the same people denying in public that chronic Lyme exists. They don't call it "chronic", but use euphemisms like "persistent", "treatment-resistant" or "antibiotic refractory Lyme". "Chronic" is a no-no word with this crowd, an admission of their failure.
Also, let's not forget, the testimony of thousands and thousands of patients treated by LLMDs with IV antibiotics that did recovered from Lyme.
That is the study from Dr.Brigitte Huber at Tufts. People with the HLA-DR4 gene allele can't produce the antibodies to fight Lyme, so the bug becomes... yes, chronic. Nothing "post-Lyme", "ex-Lyme" or "former-Lyme" about it. Your body can't fight it, so the bug camps in your system.
Completely agree there. I'm in the camp that considers ME/CFS a severe immune dysfunction that can have many different triggers. Many roads lead to Rome with ME/CFS, and I'm convinced that persistent, treatment-resistant, antibiotic-refractory or (gasp) Chronic Lyme is one of those paths, specially if untreated for many years.
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Antares in NYC
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By the way, this week I met in person two different people (one of them a nurse) who recovered from severe Lyme with long term IV antibiotics. One of them said she thought she was going to die, but thanks to the abx therapy she fully recovered. Her memory and cognition are back, neural issues resolved, and within 6 months she was no longer housebound.
Just saying.
Just saying.
There is certainly very strong evidence that untreated Lyme can become a chronic infection. I don't think anyone disputes that. However, these people will test positive for Lyme. It's the people who test negative for Lyme but have an ME-like syndrome that I think are "post-Lyme". I don't believe there is any incurable Lyme - which is not to say that we've cured it all, only that we can with existing drugs. That doesn't mean that the individual won't suffer long term consequences. We do need a better way to test for active versus post-Lyme. I would think PCR of the CSF would do it - but that's just a guess, I can't prove that.
People with HLA-DR4 are not completely unable to fight Lyme. First of all, there are many HLA's involved, and you have 2 copies of each, one from each parent. Even if you were homozygous for DRB1*04, you'd still have other HLA 2's that could react (e.g. DP, DQ). Some HLA's, however, seem to choose very effective peptide fragments to react to, whereas others tend to choose less effective ones (the exact fragments chosen are very closely related to the exact HLA's a person has). You'll still produce antibodies though - everyone will - but it might influence how effectively the pathogen is controlled.
I suspect there are other factors involved which cause the long term immune dysregulation to become chronic or not. I think the HLA's come in in that if you rapidly subdue a pathogen, you're less likely to go into a chronically altered immune state. I suspect that the mechanism of post-Lyme is autoimmune, possibly something like a GBS with campylobacter. Some people recover fully, some develop long term chronic illness, even though both sets clear the pathogen.
I doubt that chronic Lyme really looks like ME. I think it looks more like acute Lyme, but lasting longer, and progressing ultimately to death if untreated. I don't know of any chronic bacterial infections that cause long term illness but are not progressive at all. Syphilis takes a long time to kill you, but it does indeed get you in the end. If there's a relapsing-remitting course, that strongly suggests autoimmunity. A progressive course could be autoimmune or chronic infectious.
People with HLA-DR4 are not completely unable to fight Lyme. First of all, there are many HLA's involved, and you have 2 copies of each, one from each parent. Even if you were homozygous for DRB1*04, you'd still have other HLA 2's that could react (e.g. DP, DQ). Some HLA's, however, seem to choose very effective peptide fragments to react to, whereas others tend to choose less effective ones (the exact fragments chosen are very closely related to the exact HLA's a person has). You'll still produce antibodies though - everyone will - but it might influence how effectively the pathogen is controlled.
I suspect there are other factors involved which cause the long term immune dysregulation to become chronic or not. I think the HLA's come in in that if you rapidly subdue a pathogen, you're less likely to go into a chronically altered immune state. I suspect that the mechanism of post-Lyme is autoimmune, possibly something like a GBS with campylobacter. Some people recover fully, some develop long term chronic illness, even though both sets clear the pathogen.
I doubt that chronic Lyme really looks like ME. I think it looks more like acute Lyme, but lasting longer, and progressing ultimately to death if untreated. I don't know of any chronic bacterial infections that cause long term illness but are not progressive at all. Syphilis takes a long time to kill you, but it does indeed get you in the end. If there's a relapsing-remitting course, that strongly suggests autoimmunity. A progressive course could be autoimmune or chronic infectious.
Citations? Numbers?
This is why antibiotics are used for treatment.
The point is not that the lyme is persistent. It is. The issue is if you need to take an antibiotic on a long term basis to kill the persitent borella.
Anecdotes might have a place as far as generating a hypothesis but they can't be comaped to credible science based data/studies.
I read about a patient who was treated for lyme and it turnrd out he had something else and susequently died. Does that mean my anecdote has the same weight as yours and they cancel each other.
In the study/video that was cited on the other thread by @Dolphin there were many samples from healthy people to an alternative lab and their blood tests were diagnosed as positive. There are big implications from this. In case anyone wants to watch it again:
http://globalnews.ca/video/2098060/explaining-the-mysteries-of-lyme-disease
Barb
ETA I will post the citation for the man that died. I think I know where it is but I've read so much on Lyme this past week, it may take me some time.