ADCLS and CFS share common phenotype, study shows.

[Valentijn]

To be fair I don't think they failed to replicate studies of OI. They haven't tried and it was not the goal of the study.

I think they cannot define OI as a 1 minute standing test.
I think they should have called it drop of BP at one minute standing.

Agreed ... it was not proper OI testing, and if they'd even skimmed the literature they would know that. At most it was testing for immediate onset of tachycardia when standing. But by referring to it as Orthostatic Intolerance, they make it sound like they've proven that none of the patients had any form of it. But they did no such thing, and their claims are misleading as a result.

Maybe we should write some letters to the journal publishing this big steamy turd of a paper

 

[Dolphin]

From Co-Cure: https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1508d&L=co-cure&F=&S=&P=2997
(August 24)

Note: 8:56 video clip w/ interview of David Patrick on differences in Lyme disease testing procedures. Also, Dr. Patrick is currently looking for women in BC, Canada to take part in a two-day exercise challenge research study.

https://www.facebook.com/pages/Vanc...the-CCD-Study/468387359875730?hc_location=ufi

----------------------------------------------

http://globalnews.ca/video/2098060/explaining-the-mysteries-of-lyme-disease

Explaining the mysteries of Lyme disease

Fri, Jul 3 – Dr David Patrick, Director of the School of Population and Public Health at UBC, joined Aaron McArthur on BC1 to dispel some of the myths surrounding Lyme disease.

 

[msf]

Haha, ´definitive study´, nice try...

 

[msf]

According to the abstract, the study showed that one speciality lab had poor specificity using in-house criteria, but the other did not.

http://www.ncbi.nlm.nih.gov/pubmed/25182244

 

[msf]

Oh, and they tested two labs, neither of which were named in the abstract...very useful!

 

[duncan]

Give me Science instead of spin or pr campaigns.

I get it. In far too many ways, it's just a business. Maybe this is why Blumenthal supposedly attacked the IDSA from an anti-monopoly stance.

But, I tire of commercials, and I resent attempts at overt manipulation of the facts - and me - by either vendor.

It's the 17th century all over again, and the scientific revolution is taken hold in principle and spirit. All around me the Age of Enlightenment is promising a new future founded on Science. Only I have to sit on the sidelines as one apothocary tries to leech me, and another spreads lies about me and advocates burning me at the stake for witchcraft.

For some unknown reason, there are still places where Science hasn't really been practiced. Here, the hucksters and mercenaries and zealots reign.

Meanwhile, the rest of the world watches slanted commercials, and sharpens their enlightened disinterest on sarcasm and condescension.

 

[barbc56]

Oh, and they tested two labs, neither of which were named in the abstract...very useful!

I would think this is in the full abstract. Hopefully.

Blumenthal supposedly attacked the IDSA from an anti-monopoly stance.

The IDSA was exonerated.

The special review panel was formed after Mr. Blumenthal threatened to take antitrust action against IDSA. Society President Dr. Richard Whitley said Thursday the legal attack on medical guidelines by an attorney general was unprecedented.

Mr. Blumenthal and IDSA agreed to let Dr. Howard Brody, a medical ethicist at the University of Texas Medical Branch, screen all panelists for any conflicts of interest. The panel spent a year exhaustively reviewing the guidelines, conducted a public hearing and took evidence from more than 150 individuals or organizations before issuing its 66-page report with 1,025 citations.

http://www.theday.com/article/20100423/OP01/304239950

 

[duncan]

There was a settlement, @barbc56.

Regardless, that was not my point.

My point was that, where Lyme is concerned, to me it appears science to date may frequently have been a no-show, or been too amorphous, or too contradictory to act on.

That what patients may find themselves dealing with - far too often - are beliefs. Beliefs are not facts. Or facts, but only some of the facts, seldom the whole picture.

I am no more comfortable with a dogmatist than I am with a snake oil salesman. Both at times can seem indiscriminate about facts or truth.

 

[barbc56]

I think the study mentioned in the video is pretty definitive as far as how Lyme can be misdiagnosed by a false positive from the alternative labs as well as the conflict of interest between these labs and LLMDs. The more patients that are sent to the labs, the more money they make. The more patients diagnosed with Lyme, the more money the LLMDs make.

This in no way is saying that Lyme isn't serious or sometimes underdiagnosed without a test.

While either tests certainly have their drawbacks, I think the odds are better finding true Lyme is to go with the IDSA recommendations.

The "settlement" was not what is often thought of when we hear this term.. It simply meant Blumenthal agreed to the make up of of the committee investigating the recommendation and he dropped the charges. To his chagrin the IDSA guidelined were upheld.

In November 2006, Blumenthal launched an antitrust investigation into the Infectious Diseases Society of America's (IDSA's) 2006 guidelines regarding the treatment of Lyme disease.[53] Responding to concerns from chronic Lyme disease advocacy groups, Blumenthal claimed the IDSA guidelines would "severely constrict choices and legitimate diagnosis and treatment options for patients."[54] In 2008, Blumenthal ended the investigation after the IDSA agreed to conduct a review of the guidelines.[55] In 2010, an eight-member independent review panel unanimously agreed that the original 2006 guideline recommendations were "medically and scientifically justified" in the light of the evidence. The committee did not change any of the earlier recommendations but did alter some of the language in an executive summary of the findings.[56] Blumenthal said he would review the final report

.

LLMDs dont take insurance which means they can charge exorbinate prices for their servicee and mark up the price of antibioticd and supplements. Any doctor who sells supplements is considered a conflict of interest. Unsupported and unnecessary tests which aren't recognized also bring in big bucks.

So, I would definitely think the ILMDs have a conflict of interest. They prey on patients who are desperate for an answer to explain their health problems.

Barb

 

[Valentijn]

While either tests certainly have their drawbacks, I think the odds are better finding true Lyme is to go with the IDSA recommendations.

There are potentially fewer false positives with the standard tests. But there is indisputably an unacceptably high rate of false negatives as well. Alternative tests will continue to flourish until that is rectified.

This is also why Lyme remains a largely clinical diagnosis, based on symptoms, exposure, and peripheral testing which can support or discount the presence of Lyme. The Lyme tests themselves are simply not reliable enough to be the biggest factor in deciding upon diagnosis

 

[justy]

I would definitely think the ILMDs have a conflict of interest. They prey on patients who are desperate for an answer to explain their health problems.

This is a pretty sweeping statement Barb - I don't have personal experience of the States, but there are Drs in Europe who are working tirelessly to find answers to their patients health problems, who are harassed and hounded by the medical authorities, threatened with having their licenses taken away (repeatedly), are inundated with more patients than they can possibly handle and more work than any person could possibly want. I have seen two such Drs, and I can firmly attest to the fact that they were not 'preying' on me - in fact at times it has felt like the patient group is preying on them - demanding more and better tests and treatments, asking them to give up all of their time for us.

 

[duncan]

@barbc56 , what happened with the composition of that panel?

This is reflective of difficulties with trying to defend some of the supporters of the IDSA's Lyme dogma.

Some of these rail against the evils of false positives, while massive numbers of false negatives may be ravaging areas across North America and Europe. I'm sure everyone here is familiar with the debate over persistent IgM's surfacing in individuals with Lyme. IDSA supporters insist that, with Lyme as with most infections, IgM values must convert after 30 to 60 days to IgG values.

But an opposing theory pays homage to the relapsing-remitting nature of Lyme, or, to be more precise, to the shifting antigenic properties that characterize the spirochete. That theory suggests the constantly shifting outer surface proteins keep preventing IgM's from converting, for any sustained period, to IgGs - people infected with Lyme maintain elevated IgMs, but more or less normal IgG's.

Most IDSA supporters denounce that theory. According to these supporters, people with elevated IgMs after a certain timeframe cannot still have Lyme. Period. But most of that same gang ACCEPT that theory as proven for dogs. Dogs also get Lyme disease. But veterinarians know that canine Bb IgMs remain elevated. Of course, dogs aren't humans, but if a broad immunological principle can be undone in canines, and this theory apply to canines...well, you get my drift.

Or some preach about dispensing too many antibiotics, while sick people may be jettisoned prematurely from medical clinics, or denied insurance coverage.

Like I said: half-truths or partial pictures.

Case in point: The IOM, in an unbiased effort to make Lyme panels more balanced, recommended to the IDSA for its new guidelines that it add a couple patients to its panel. Seemed like a reasonable suggestion - to offset accusations that these panels are stacked with a certain point of view.

Well, only one patient was added, and that patient wasn't even a Lyme patient. I think she was a cancer survivor. When asked what she knew about Lyme, she basically admitted she knew very little indeed. One patient, not sick with Lyme at all. Technically, they DID add a patient...

 

[barbc56]

I'll stick with the IDSA. If ILADS had credible science behind them, that's where I'd be. IMHO, they don't.

Barb

 

[duncan]

This doesn't have to be a dichotomy.

It doesn't have to be IDSA vs. ILADS, black or white.

How about choosing for unbiased Science and the patients?

Start from scratch. Throw out all of your assumptions.

I realize you've neither the time nor the inclination. Just saying don't presume that being disenchanted with one camp necessarily means the other is good or right part or all of the time.

 

[Dolphin]

They are also terrible at maths, or I am:

'Independent evaluation
has found that specificity at alternative laboratories can be less than 50% In BC, Lyme
disease prevalence in the tested population is well below 1%, meaning that false positive
diagnoses from an alternative lab can exceed true positives by a ratio of at least 50 to one.'

I'm pretty sure they should have said that the ratio was one to one.

The video from Dr Patrick explains it:
http://globalnews.ca/video/2098060/explaining-the-mysteries-of-lyme-disease

 

[msf]

Thanks, Valentjin already explained it. I was terrible at maths (and still am).

 

[Research 1st]

This is quite hysterical that the state are in denial with Germany at 1,000,000 new cases a year. (A denial process of Lyme is only short term cost effective, hightly profitable but once all the human stock's DNA is infected, then there's a problem).

Figures or authority deny infections in CFS or Chronic Lyme (of any type) despite research showing a whole host of viruses and bacteria present . Yet science understands infections will always be seen in humans with unexplained immune suppression.

1 - 0 to the Chronic Lyme lobby.

We now have the following stupid terms suggested by confused authoritarians:
Post Treatment Lyme
Alternatively Diagnosed Chronic Lyme

Ignore this nonsense and focus on what is happening in basic raw facts. Politically, we the public cannot have Chronic Lyme in people. Medically we can though and medicine follows science.

What is the medical findings using science not politics?

We have patients with denied Chronic Lyme who have Borrelia Positive blood tests, who have the signs and damage of Borrelia Neuroborreolosis (CNS infection) and it's co infections.
The following signs of ME and Chronic Lyme occur in Neuroborreolosis. Neuroborreolosis causes a condition called, Encephalomyelitis. If you have ME you may recognise the name......

Lyme Encephalomyelitis caused by CNS infiltration of Borrelia can lead to:

Autonomic Dysfunction - as in ME and MS
Arthritis - as in ME and MS
Loss of IQ and Cogntive problems - as in ME and MS
Neuropathy - as in ME and MS
Trigeminal Neuraglia - as in ME and MS
Seizures - as in MEand MS
Neuropsychiatric changes - as in ME and MS
Hormonal imbalances - as in ME and MS
Bone loss - as in ME and MS
Brain atrophy - as in ME and MS

So it doesn't take a genius to work out that untreated infections lead to autoimmune disease.
It doesn't take a genius either to learn that path studies on deceases MS finds Borrelia over and over again and has done for decades, as in Alzheimer's.

For those interested, this is Steere himself: concluding untreated Lyme leads to brain disease

The course of initially untreated Lyme disease in children may include acute infection followed by attacks of arthritis and then by keratitis, subtle joint pain, or chronic encephalopathy. (N Engl J Med 1991; 325:159–63.)

ME is a chronic encephalopathy.
ME is CFS is Chronic Lyme = but no private labs results accepted that test positive.
What a curious situation.

Remember this admission of Steere in 1991 (Now apparently a Chronic Lyme denial doctor with the IDSA?) is in untreated patients. Why does this matter?

All ME CFS who are infected and unaware of Lyme, (by definition they aren't tested), are untreated Lyme patients. They too just happen to have a chronic encephalopathy but need CBT and GET and to go nowhere near Lyme tests that aren't based on the single B31 strain the CDC and IDSA 'approve' that will test negative. But they are based on other methods of Borrelia detection (such as Lymphocytes recognising Borrelia) or other variants entirely. Lyme variants.

I rest my case for the nitwits who control patients lives and keep them sick intentionally by denying them tests.

So we have to remember ME doesn't exist and we have Fukuda CFS or SEID - not linked to inflammation and not linked to Encephaloymelitis like Lyme. Don't go having those alternative Lyme tests now you naughty naughty people. Stick to CBT GET, clearly it works and nothing is wrong.

This is why the following never was published in 1991:

The course of initially untreated Lyme disease in children may include acute infection followed by attacks of arthritis and then by keratitis, subtle joint pain, or chronic encephalopathy. (N Engl J Med 1991; 325:159–63.)

This is why it's best not to get tested according to those who know better than patients, people who have their health and freedom..this is advise given to patients who've never had the tests.

The IDSA is correct? I wonder.

Read the paper attached and decide for yourself if Chronic Lyme doesn't exist.

 

[barbc56]

realize you've neither the time nor the inclination. Just saying don't presume that being disenchanted with one camp necessarily means the other is good or right part or all of the time

I'm assuming that you are assuming my presumptions.

Barb

 

[barbc56]

Read the paper attached and decide for yourself if Chronic Lyme doesn't exist

.
I just read this. The authors are talking about the serious consequences of untreated Lyme. I'm not sure how this relates to Chronic Lyme.

It also states that the titers are raised for quite a period of time after the initial exposure.

I am not doubting the seriousness nor the long term consequences of Lyme.

What I do doubt is that long term antibiotics are an appropriate treatment.

Barb

ETA
The authors also state that a positive antibody response by itself indicates an active infection. The paper was written in 1991.

I can't copy and paste from a PDF on my tablet to be more specific.

When I looked at this study on pubmed, it looks like it was published?

 

[alex3619]

For some unknown reason, there are still places where Science hasn't really been practiced. Here, the hucksters and mercenaries and zealots reign.

I think its worse than that. Its more like the age of de-enlightenment, as the corporate interests and marketing over-ride the science.

I was just thinking about things around these issues earlier today. Corporations do NOT make good citizens. They cannot. They have the appearance of good citizens sometimes, but that is just public relations and spin. The board of directors are obligated to do what is right for the company, even if that is not good for society. The laws, regulations and culture around this need to change. That does not mean that individual directors or corporate executives cannot be good citizens, on a person by person basis. Its the nature of corporations themselves.

So stuff gets marketed and sold but we cannot be sure of its veracity or usefulness.

Similar arguments apply to corporate funded science.

However its a far leap to claim that someone with Lyme must have CFS or visa versa. It happens. Its not universal. The symptom profiles are similar, but in one study the biochemisty had overlap but was different (plasma or spinal fluid proteomics, iirc).