Lyme Disease, Autism Link Debunked

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María Luján
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Re: Lyme Disease, Autism Link Debunked

Postby María Luján » Sun May 26, 2013 3:03 pm

hi kukulkan
The point of testing as difficult implies that no invasive procedures should be used - an aspect that I thought I did not have to clarify but ...

Considering the bolded part, from what I read, the consideration of chronic Lyme is really controversial. It seems that testing and diagnosis are problematic- especially looking at the blood testing only. The consideration of chronic implies that no late stage of Lyme is reached in terms of clinical testing, especially when immune dysfunction is present? It seems that there is a lot to know about this....

There are several conditions today that have these problems

What I do disagree is how for some a quick diagnosis of positive is done ( with personal opinions presented as facts) and for others a fast dismiss is the proof of absence with testing that is problematic or is considered that the state of the knowledge is incomplete. Evidently what I expect is the best approach , that is neither of the above.

Diagn Microbiol Infect Dis. 2013 Jan;75(1):9-15. doi: 10.1016/j.diagmicrobio.2012.09.003. Epub 2012 Oct 11.
Single-tier testing with the C6 peptide ELISA kit compared with two-tier testing for Lyme disease.
Wormser GP, Schriefer M, Aguero-Rosenfeld ME, Levin A, Steere AC, Nadelman RB, Nowakowski J, Marques A, Johnson BJ, Dumler JS.

http://www.ncbi.nlm.nih.gov/pubmed/23062467

Open Neurol J. 2012;6:140-5. Issues in the diagnosis and treatment of lyme disease.
Donta ST.
Since the identification of the causative organism more than 30 years ago, there remain questions about the di-agnosis and treatment of Lyme Disease. In this article, what is known about the disease will be reviewed, and approaches to the successful diagnosis and treatment of Lyme disease described. In considering the diagnosis of Lyme disease, a major problem is the inability of documenting the existence and location of the bacteria. After the initial transfer of the bacteria from the Ixodes tick into the person, the spirochetes spread locally, but after an initial bacteremic phase, the organisms can no longer be reliably found in body fluids. The bacteria are proba-bly present in subcutaneous sites and intracellular loci. Currently, the use of circulating antibodies directed against spe-cific antigens of the Lyme borrelia are the standard means to diagnose the disease, but specific antibodies are not an ade-quate means to assess the presence or absence of the organism. What is needed is a more Lyme-specific antigen as a more definitive adjunct to the clinical diagnosis. As for the treatment of Lyme disease, the earliest phase is generally easily treated. But it is the more chronic form of the disease that is plagued with lack of information, frequently leading to erroneous recommendations about the type and du-ration of treatments. Hence, often cited recommendations about the duration of treatment, eg four weeks is adequate treatment, have no factual basis to support that recommendation, often leading to the conclusion that there is another, per-haps psychosomatic reason, for the continuing symptoms. B. burgdorferi is sensitive to various antibiotics, including pe-nicillins, tetracyclines, and macrolides, but there are a number of mitigating factors that affect the clinical efficacy of these antibiotics, and these factors are addressed. The successful treatment of Lyme disease appears to be dependent on the use of specific antibiotics over a sufficient period of time. Further treatment trials would be helpful in finding the best regimens and duration periods. At present, the diagnosis of Lyme disease is based primarily on the clinical picture. The pathophysiology of the disease remains to be determined, and the basis for the chronic illness in need of additional research. Whether there is continuing infection, auto-immunity to residual or persisting antigens, and whether a toxin or other bacterial-associated product(s) are responsible for the symptoms and signs remains to be delineated.


I have found other manuscript
Clin Vaccine Immunol. 2013 May 8. Lack of serum antibodies against Borrelia burgdorferi in children with autism.
Burbelo PD, Swedo SE, Thurm A, Bayat A, Levin AE, Marques A, Iadarola MJ
.
The work of Swedo is very interesting and serious; I am going to read it to clarify more, especially if the childrenwere tested for immune dysfunction.

Objectively, my main concern is always the same related to positive/negative- besides the testing; what are the assumptions of the clinical status of the patients tested? Were they considered if the immune answer would be the same in the childrenwith autism than in neurotypical ?

Winnie
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Re: Lyme Disease, Autism Link Debunked

Postby Winnie » Sun May 26, 2013 3:40 pm

María Luján wrote:
I have found other manuscript
Clin Vaccine Immunol. 2013 May 8. Lack of serum antibodies against Borrelia burgdorferi in children with autism.
Burbelo PD, Swedo SE, Thurm A, Bayat A, Levin AE, Marques A, Iadarola MJ
.
The work of Swedo is very interesting and serious; I am going to read it to clarify more, especially if the childrenwere tested for immune dysfunction.


The American Lyme Disease Foundation already found it and clarified:

Misinformation about Lyme Disease

Does Lyme disease induce autism in children?

The view that Lyme disease induces autism in children has been advanced by the Lyme-Induced Autism Foundation (LIAF) which claims that up to 90% of autistic children are infected with Borrelia (1). There are no published data to substantiate such a claim. Having a positive ELISA or Western Blot test is not proof of active infection; it might indicate the presence of antibodies that are the result of past infection with Borrelia burgdorferi, the causative agent of Lyme disease. Such antibodies may persist at low levels, months to years after the active infection has been cured by appropriate antibiotic therapy. In some persons, a positive ELISA or Western blot is due to a non-specific cross-reaction (i.e., a false positive test).

There are serious problems with the quality of the laboratory tests used to support the claim that a large percentage of autistic children are seropositive for Lyme disease. First, the actual data upon which the claim is based have never been published in a peer reviewed scientific journal; this casts doubts on their accuracy. Second, there has been no independent confirmation to establish that the results are valid and reproducible. Third, in many cases, it appears that non-standard criteria were used to interpret the Western blots that were used to support an association between Lyme disease and autism. Such criteria are at variance with those recommended by the CDC, thereby resulting in a significant number of false positive tests. Consequently, the unpublished results of the serological tests reported by the LIAF must be viewed with grave skepticism.

The results of two recent carefully conducted controlled studies completely refute the erroneous claim of the LIAF, namely, that Lyme disease induces autism in children (2,3).:

2. "Serologic markers of Lyme disease in children with autism".
Ajamtan, M., Kosofsky, B.E., Wormser, G.P., Rajadhyalsha, A., and Alaedini, A.
JAMA 309: 1771-1772, 2013.

3. "Lack of serum antibodies against Borrelia burgdorferi in children with autism"
Burbelo, P.D., Swedo, S.E., Thurm, A., Bayal, A., Levin, A.E., Marques, A.,
and Iadorola, M.J.
Clinical Vaccine Immunology, May 2013, on-line ahead of print publication.

Continues: http://www.aldf.com/Misinformation_about_Lyme_Disease.shtml


Sample of erroneous propaganda published by LIAF that the American Lyme Disease Foundation must be referring to (Tami Duncan again!):

Think Tank to Examine Link Between Autism and Lyme Disease January 26-28

Why are doctors saying that up to 90% of children with autism are infected with Lyme disease? The Lyme Induced Autism Foundation is holding a physicians' Think Tank on January 26-28th in San Diego, CA to discuss this recent finding.

Continues: http://www.prweb.com/releases/Lyme_disease/Autism/prweb495433.htm



If I had noticed the info from the American Lyme Disease Foundation earlier, I'd have saved a little time chasing the LIAF bunny, but I also wouldn't have known the extent of LIAF's quackery. And it's extensive.

Buyer beware. :)
Winnie
"Make it a powerful memory, the happiest you can remember."

María Luján
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Re: Lyme Disease, Autism Link Debunked

Postby María Luján » Sun May 26, 2013 6:20 pm

Now, I understand why the aldf is presenting this statement. I do think that they are concerned about the 90 % presented as positive in autism, especially looking at the testing aspects and others. I would like to know what is the answer of those who proposed that percentage and the approach.

However, this does not solve the individual situation that may or may not have Lyme disease correlated with autism-like behavioral deficits

Looking at the comments of your link , the main author of the manuscript says
""A case-control study such as this does not address whether Lyme disease may cause autism-like behavioral deficits in some cases," he said.

However, the study's sample size is large enough to challenge the idea that 20% or more of children with autism have Lyme disease, Alaedini said."

Therefore I wonder how with this situation those "some cases" would be tested or detected or diagnosed? especially with other comorbilities present in ASD? Controlled studies say it is not 90 %; but it may be not 0% what it is?

OK. Now, this reminds me of other situations- such as the controversy about gluten sensitivity or the significance of certain testing post strep. And I remember how the potential impact of gluten was dismissed only with celiac disease testing in ASD- even when the complexity is different and now is known that for every person with celiac disease there may be 6-7 with gluten sensitivity...also with testing for post-strep impact in OC symptoms and the significance of, that needed years of research and studies...and still... especially in ASD, still very much needed...

I do think that further research on the topic will clarify more the point.

Winnie
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Re: Lyme Disease, Autism Link Debunked

Postby Winnie » Sun May 26, 2013 7:51 pm

María Luján wrote:Looking at the comments of your link , the main author of the manuscript says
""A case-control study such as this does not address whether Lyme disease may cause autism-like behavioral deficits in some cases," he said.

However, the study's sample size is large enough to challenge the idea that 20% or more of children with autism have Lyme disease, Alaedini said."

Therefore I wonder how with this situation those "some cases" would be tested or detected or diagnosed? especially with other comorbilities present in ASD? Controlled studies say it is not 90 %; but it may be not 0% what it is?


That seems self explanatory.

I think you understand that no study could ever be designed to test every single child with autism on the planet.

Perhaps you should examine the quality of the evidence behind the lyme-induced autism claims instead.
Winnie
"Make it a powerful memory, the happiest you can remember."

María Luján
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Re: Lyme Disease, Autism Link Debunked

Postby María Luján » Sun May 26, 2013 8:41 pm

no study could ever be designed to test every single child with autism on the planet.

That´s for sure self explanatory....

Winnie
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Re: Lyme Disease, Autism Link Debunked

Postby Winnie » Sun May 26, 2013 8:44 pm

María Luján wrote:
no study could ever be designed to test every single child with autism on the planet.

That´s for sure self explanatory....



So what do you think of the evidence that the study refutes?

You haven't touched it.
Winnie
"Make it a powerful memory, the happiest you can remember."

kulkulkan
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Re: Lyme Disease, Autism Link Debunked

Postby kulkulkan » Mon May 27, 2013 11:08 am

I haven't researched Lyme or how it is tested in any great detail, but it seems like the testing part is VERY controversial. Until there is consensus on whether the newer PCR DNA testing or other tests are accurate enough (or becomes the new gold standard combined with the 2-tier test), it is premature to make claims of link to autism considering one cannot even make claim of whether Lyme itself is or was present. But the preliminary data in the Bransfield hypothesis does point to something going on that is different in ASD than controls and should be investigated (even if it isn't Lyme).

María Luján
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Re: Lyme Disease, Autism Link Debunked

Postby María Luján » Wed May 29, 2013 7:15 pm

Hi kukulkan
The main point for me is that this situation has already happened in the field. Remember when GI issues were considered "similar in prevalence and everything" in ASD vs neurotypical or the controversy on post strep PANDAS- even when this last one is still under research, especially in ASD. It is not the same for a doctor to know a lot about rheumatic fever in previously neurotypical children than in post strep conditions in children with immune dysfunction- and even immune defficiencies in terms of IgA or abnormal Igs- and with other comorbidities AND also a diagnosis of ASD and potential autoimmune reactions, that is reported to take place even in immunocompetent children.
The testing is controversial such as it has been used and the lack of consideration of the individuality in ASD and potential confounders is also worrisome, because the validity of the test and the immune answer has not been studied to know if it is the same for neurotypical or controls vs ASD. Therefore I do not consider adequate the rush to give high percentages but neither the dismisal without further research.

But the preliminary data in the Bransfield hypothesis does point to something going on that is different in ASD than controls and should be investigated (even if it isn't Lyme).

I agree, even when there is two Medical hypothesis papers and one review and I did not find other manuscripts on the topic Did you?.

kulkulkan
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Re: Lyme Disease, Autism Link Debunked

Postby kulkulkan » Wed May 29, 2013 11:26 pm

Maria what is the other medical hypothesis and review are you referring to? Below is one of the studies referenced in the bransfield hypothesis. Mycoplasma confection (58%) was even higher than lyme and this author has written about it on other neurodisorder as well.

http://www.immed.org/NeuroDiseases/Neta ... rRev3i.rtf

mimicry
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Re: Lyme Disease, Autism Link Debunked

Postby mimicry » Thu May 30, 2013 6:25 am

There is a huge difference between gi issues (vague, common) as co-morbid and lyme disease causing 90% of autism... First lyme is relatively rare and relatively localized, look at a lyme map. Second there is only two ways to transmit lyme. From a tick bite or from a mother with an active AND untreated infection to a fetus. Next we can consider other studies that indicate that debunk the "chronic lyme" theory. The disease has a stage of progression with brain damage in the final stage. I say right now that there is no way that any one especially any parent concerned enough to be on this forum, would have been blind to miss the first two stages and the very high likelihood of a huge infected tick bite. The joint damage in stage 2 alone would turn most kids into daily crying heaps. It's not a joke, it hurts like hell! And as my knees and hips daily remind me, does not go away.

María Luján
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Re: Lyme Disease, Autism Link Debunked

Postby María Luján » Thu May 30, 2013 8:40 am

Hi mimicry
You are right and I did not try to support that percentage, only to show the situation in ASD about how in certain conditions for neurotypical population sometimes complexity in ASD is not taken into account..

The controversy on Lyme needs further research
Please look
Int J Gen Med. 2013 Apr 23;6:291-306. doi: 10.2147/IJGM.S44114. Print 2013.
Review of evidence for immune evasion and persistent infection in Lyme disease.
Berndtson K.

http://www.ncbi.nlm.nih.gov/pubmed/23637552

Now, is there any evidence that Lyme has not a presentation without acute symptoms?I have found some case reports only...
and thank you for sharing your personal experience.

mimicry
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Re: Lyme Disease, Autism Link Debunked

Postby mimicry » Thu May 30, 2013 11:53 am

Study that indicated reinfection in all cases. http://www.medpagetoday.com/InfectiousD ... ease/35952

Even if lyme is present without symptoms, it doesn't make sense that it progresses to the third stage of brain damage with zero indication of the first two stages. Since lyme seems to have many of the same characteristics of syphilis, and that is a much more common disease, are there studies that indicate final stage syphilis with no symptoms? I can buy varying severity of infection, some immune systems may not even need antibiotics, but I don't see how the disease can skip it's own progression.

There's much that's unknown about lyme disease, which makes people paranoid and allows for much woo to surround it.

María Luján
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Re: Lyme Disease, Autism Link Debunked

Postby María Luján » Thu May 30, 2013 1:31 pm

What do you think about this site?
http://www.lymeneteurope.org/

It seems that a case per case approach is being developed? this is old...
http://www.lymeneteurope.org/info/why-t ... me-disease


http://www.lymeneteurope.org/info/late- ... me-disease
The incidence of asymptomatic infection has not been adequately delineated. There appear to be substantial numbers of patients who remain asymptomatic, but reactivate their disease a number of months or years later, following trauma, pregnancy, a medical illness for which an antibiotic is prescribed, or other stresses, including psychological stresses

9. Donta ST: Reactivation of latent Lyme Disease. X Annual LDF International Conference on Lyme Borreliosis, National Institutes of Health, April 1997
Is there something like latent Lyme Disease then?from the manuscript you posted it seems that in those patients there were reinfection and not relapse. Therefore the controversy is with the tests, with if are there asymptomatic patients with the conditions, and with the latent/chronic vs reinfection situation and so on.

mimicry
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Re: Lyme Disease, Autism Link Debunked

Postby mimicry » Thu May 30, 2013 1:42 pm

That's the question. There are people who claim latent lyme exists, but that study I linked said no, it was reinfection. It's been almost 20 years for me since getting it. I have health issues for sure, but nothing like when I had the active infection. I have been tested twice when I was sick to see if active infection and no evidence was found. I have read much of the woo around lyme for the past 20 years, it has a "biomed" following similar to autism, with new theories and treatments. For me, other than the theory that the lyme attacked my glands, instead of just my joints (thyroid was swollen at time of infection then later quit working, and I have other hormonal issues) my experience has been exactly what the cdc says.

kulkulkan
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Re: Lyme Disease, Autism Link Debunked

Postby kulkulkan » Thu May 30, 2013 5:10 pm

It seems to me that ultimately it all boils down to accurate testing and whether one believes it or not (including researchers and doctors). I would think that a PCR DNA (or RNA) type test, whether blood, fluid, or in tissues would have almost 100% specificity, though much lower sensitivity (so lots of false negatives, so I understand why that shouldn't be the standard first tier of testing) - but is it valid test is the question and if so, one can draw more appropriate conclusions on the various presentations and strains of Lyme. Another plausible theory is that the immunological changes (such as microglial activation) due to pathogens may exist for months and years even after the pathogen is gone.

María Luján
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Re: Lyme Disease, Autism Link Debunked

Postby María Luján » Thu Jun 27, 2013 7:36 pm

New findings on Lyme
http://news.wjct.org/post/unf-researche ... me-disease
First, only one Lyme bacterial species, Borrelia burgdorferi sensu stricto, was previously recognized to cause disease in North America. Current testing methods and interpretation criteria, designed to detect just one species, may explain many of the complaints involving the unreliability of Lyme disease tests in the U.S....

“Additional evidence presented suggests that some people may develop chronic infections, and the current antibody testing approach for Lyme disease may not identify the infections.”



Int J Med Sci 2013; 10(7):915-931. doi:10.7150/ijms.6273 search Paper

Lyme Borreliosis in Human Patients in Florida and Georgia, USA

Kerry L. Clark1,✉, Brian Leydet1,2, Shirley Hartman


http://www.medsci.org/v10p0915

mimicry
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Re: Lyme Disease, Autism Link Debunked

Postby mimicry » Thu Jun 27, 2013 10:16 pm

The research coming out of columbia university will be the one to watch. They had a primate study that suggests that active bacteria may last when treatment is delayed. But it still raises the question of latent lyme progressing to neurological damage without indication of symptoms in previous stages (as would pertain to autism).http://www.columbia-lyme.org/research/abstracts.html
Theoretically, that may happen in utero, but the numbers on that would be small. We're talking untreated, asymptomatic mother, passing to a fetus. That would be a tiny population, certainly not enough to explain autism.

sarahsu9
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Re: Lyme Disease, Autism Link Debunked

Postby sarahsu9 » Sun Aug 11, 2013 7:57 am

The testing of Lyme disease has always been difficult - however, there is a newer method of testing, in which a blood sample is cultured for Lyme spirochetes:

http://www.advanced-lab.com/spirochete.php

If positive, a picture of the Lyme spirochete is sent to you to hang on your refrigerator. Pretty irrefutable.

I have no desire to debate Lyme disease, chronic myth, post studies, and so forth.

Winnie
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Re: Lyme Disease, Autism Link Debunked

Postby Winnie » Sun Aug 11, 2013 12:39 pm

sarahsu9 wrote:If positive, a picture of the Lyme spirochete is sent to you to hang on your refrigerator.


Or craft into spirochete placemats with fabric transfer paper, or mod-podge onto the kitchen table.

All sorts of pinterest possibilities there.


(kidding :wink:)
Winnie
"Make it a powerful memory, the happiest you can remember."

sarahsu9
Posts: 169
Joined: Fri Jul 23, 2010 4:44 pm

Re: Lyme Disease, Autism Link Debunked

Postby sarahsu9 » Sun Aug 11, 2013 2:11 pm

Ah, if only my own PCR positive blood test for Lyme, and co- infection Bartonella anti-body positive test
were pin interest art projects.

If anyone would like some real information on Lyme disease, the politics, or just a fascinating read,
I recommend the book
Cure Unknown by
Pamela Weintraub

http://us.macmillan.com/cureunknown/PamelaWeintraub


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