Friday, September 19, 2014

FDA plans to severely restrict Lyme testing


 
Lyme-related news from our blogs 
Whose interests are being protected by the FDA? Not Lyme patients, apparently


The FDA has announced it plans to severely restrict diagnostic testing for Lyme disease. Click here to learn more.


  

More from our blogs:

 

NEWS: Newspaper says Lyme treatment costs must be lowered

 NEWS: Under Our Skin's sequel, Emergence, now available

 

TOUCHED BY LYME: Getting a good night's sleep 

 

TOUCHED BY LYME: No magic bullet for Lyme, but useful ideas 

 

NEWS: Watch Amy Tan and Dr. Stricker's San Francisco interview 

 

LymeDisease.org, publisher of The Lyme Times, advocates nationally for people with tick-borne diseases, educates the public and helps fund medical research. We are the go-to source for news, information and health policy analysis in the Lyme community. Become a member today.

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Thursday, September 18, 2014

Amazing photos from our NY Times Lyme Protest

Here are photos from our NY Times Lyme protest yesterday. Greta Van Susteren, Fox News reporter, tweeted about it. Severn Butoh dancers performed. People came in from Quebec, Missouri, Texas, Washington State, Washington D.C. and surrounding NE states.

 



































Here is one observer's commentary about the event:

"Having been at yesterday's protest, I can only say that it was an overall success, and the way our money was spent was obvious. It was not cheap to transport the wheelchairs, hire the security guard, have the butoh dancers, make professional signs, transport the beautiful and large banner.  The butoh dancers  beautifully conveyed the pain of the illness and riveted passersby who asked questions.
 
We had contact with NYTimes reporters that was unexpected in its openness and time commitment.  The 10s of journalism students were eager to learn, naïve though most were, asked good questions, and are all eager to build resumes by submitting articles to small, neighborhood newspapers, off-center newspapers, and wherever they can get them.  Great that they were assigned covering us. We had Columbia Journalism students and NYU students.  Not a bad lot!  Of course they won't make a mainstream newspapers.  It's a beginning.  I don't know if  you consider the Poughkeepsie Journal mainstream, but it sure has been important to us, and as far as I'm concerned, deserves a Pulitzer.
 
I found the NYTimes infectious disease Reporter was stunned to learned that doctors are being sanctioned, though he was clear he is only free to cover Ebola right now.  He was also interested in the zoodiagnosis studies.   
 
I thought 100 people turning out was terrific; we were seen by many; passersby were interested and asked questions.  Student reporters and reporters asked questions, and all was good."

Wednesday, September 17, 2014

Erica’s Fight Against Chronic Lyme Disease » Jenna's Video Lyme Blog

I just came across this video account of Erica Volker's Lyme story. It's very intense, so make sure you're ready to see a serious case of neurological late-stage Lyme. The good news is that she is on the mend. Hard to believe, since in some of the videos her full-body tremors are so incredibly pronounced. I encourage you to show this to friends and send the link around. I have gone through much of what Erica has, but without the many doctors who misdiagnosed me. I was lucky to be diagnosed earlier or at least in an earlier stage. (Although it was after 30 years of initial ifection!) Despite many forms of treatment, however, my tremors and neuropathy (especially in my legs) continue to worsen, interrupting my sleep and making daily activities such as walking, cooking, dressing, and socializing increasingly difficult.

Erica's case is a classic example of how often doctors who don't understand that Lyme is a multi-system and multi-microbe disease that can require long-term treatment with different medicines for each pathogen. A single tick can deliver a payload consisting of a large number of pathogens. Scientists may not yet have identified all of them, some researchers speculate.

Ticks that transmit B. burgdorferi to humans can also carry and transmit several other parasites, such as Theileria microti and Anaplasma phagocytophilum, which cause the diseases babesiosis and human granulocytic anaplasmosis (HGA), respectively. Among early Lyme disease patients, depending on their location, 2–12% will also have HGA and 2–40% will have babesiosis. Ticks in certain regions, including the lands along the eastern Baltic Sea, also transmit tick-borne encephalitis. Some ticks can carry Bartonella, Ehrlichea, and Protomyxzoa.

As you can imagine, the number of permutations of actual infections in a given patient can vary widely. Thus, each patient's symptoms and presentation can be unique and vastly different from another patient's. Add to this the fact that Borrelia is called the Great Imitator (similar to Syphilis) because it can invade different organ system and thus imitate the symptoms of over 200 different diseases. Considering all of the above, t's no wonder that doctors have extreme difficulty diagnosing the disease.

Click here to see Erica's video:

http://neuro-lyme.com/videoblog/ericas-fight-against-chronic-lyme-disease/

Our Lyme demonstration in NYC today

Greta Van Susteren from Fox News saw the Lyme protest in front of the NYT today and tweeted asking if anyone knows what was going on. We're trying to bombard her with tweets. Can you spread the word and post asking people to tweet her with our press release and tweet her yourself?: 

Here's the post:

Please tweet Greta Van Susteren from Fox News immediately! Greta saw the Lyme protest in front of the NYT and tweeted asking if anyone knows what was going on. Please have everyone you know bombard her with tweets with our press release: http://truth-out.org/speakout/item/25963-lyme-activists-to-speak-out-at-new-york-times-with-silence-against-silence


Tuesday, September 16, 2014

Lyme-caused paralysis in rabbits

Since I have some Parkinson's-like symptoms such as tremor and rigidity, I found this article to be of interest. Apparently other mammals can be affected in ways that look Parkinsonian, by infection with Borrelia burgdorferi sensu lato (s.l). 

- Bob

Tick Paralysis in a Snowshoe Hare by Ixodes pacificus Ticks in British Columbia, Canada
John D Scott, Catherine M Scott and John F Anderson
Journal of Veterinary Medicine and Science, 2014; 2(2): 5.

http://www.avensonline.org/wp-content/uploads/2014/09/JVSM-2325-4645-02-0010.pdf


Abstract


We provide the first reported case of tick paralysis in a wildlife animal caused by the western blacklegged tick, Ixodes pacificus Cooley & Kohls. 

Six I. pacificus females and one male were collected from a feral Snowshoe Hare roaming the coastal area of southwestern British Columbia, Canada. When the hare was rescued from the forest habitat, it was unable to walk, and showed typical symptoms of tick paralysis, including ascending flaccid paralysis. 

At the nearby wildlife rehabilitation centre, engorged I. pacificus females were collected from the hare. Because of the rapid progress of tick paralysis, the Snowshoe Hare, Lepus americanusErxleben, died shortly after the start of rehabilitation. X-rays were normal, and reveal no physical injury.

Since the Lyme disease spirochete, Borrelia burgdorferi sensu lato (s.l) Johnson, Schmid, Hyde, Steigerwalt, and Brenner, was circulating enzootically in this area, we tested all ticks infesting the Snowshoe Hare. Using PCR, a single male was positive for B. burgdorferi s.l., whereas all of the attached I. pacificus females were negative. 

Since only the single I. pacificus male was infected with Lyme disease spirochetes, we intuitively conclude that the engorged I. pacificus females were the cause of tick paralysis. Medical practitioners and wildlife rehabilitators are advised to consider tick paralysis in their differential diagnosis when people, livestock, companion animals, and wildlife animals present with acute ascending motor deficits after exposure in grassy and wooded areas.


Free, full text of this Open Access Research Article (pdf file, 2.8 MB):
http://www.avensonline.org/wp-content/uploads/2014/09/JVSM-2325-4645-02-0010.pdf

Monday, September 15, 2014

New technique for deep brain stimulation surgery proves accurate and safe

This article is a little bit old, but I hadn't heard of the DBS evolution before so I offer it up, here. For anyone considering DBS, I'm getting the sense it is worthwhile doing some research about who has done it most successfully, with fewest complications, and best post-installation programming of the control unit.

 As an aside I should relay that I had a conversation with a fellow who was in his 70s and who had serious tremors from Parkinson's. He is ecstatic about the success of his DBS surgery which she had done in Zürich, Switzerland, claiming that they have the best track record of anyone. His claim was that they had the most advanced surgical techniques as well as the highest accuracy in electrode placement and control-unit programming. He told me that he's back to bike riding, and he's riding 1000 miles a year. Apparently, he had been to the point of not being able to ride a bicycle at all.

-Bob

Date:June 5, 2013

Source: Oregon Health & Science University

Summary:
The surgeon who more than two decades ago pioneered deep brain stimulation surgery in the United States to treat people with Parkinson's disease and other movement disorders has now developed a new way to perform the surgery -- which allows for more accurate placement of the brain electrodes and likely is safer for patients.

The success and safety of the new surgical technique could have broad implications for deep brain stimulation, or DBS, surgery into the future, as it may increasingly be used to help with a wide range of medical issues beyond Parkinson's disease and familial tremors.

The new surgery also offers another distinct advantage: patients are asleep during the surgery, rather than being awake under local anesthesia to help surgeons determine placement of the electrodes as happens with the traditional DBS surgery.
A study detailing the new surgical technique is being published in the June 2013 edition of the Journal of Neurosurgery, and has been published online at the journal's website.

See the rest of the story:


Monday, September 8, 2014

More ticks and Lyme disease in northwestern California

 

….”This study demonstrates that tick activity patterns are more extended than previously recognized in northwestern California.”


Seasonal activity patterns of the western black-legged tick, Ixodes pacificus, in relation to onset of human Lyme disease in northwestern California.

 

http://www.ncbi.nlm.nih.gov/pubmed/25113980 


Sunday, September 7, 2014

Lone Star tick bite causing meat allergies

There is a rare, newly diagnosed meat allergy resulting from tick bites, but a good one to know about because the symptoms can be so severe, even fatal. These reports come from the ISID (International Society for Infectious Diseases), not to be confused with the IDSA (Infectious Diseases Society of America).

-Bob

LONE STAR TICK - USA: (PENNSYLVANIA, OKLAHOMA), MEAT ALLERGY
************************************************************
A ProMED-mail post
<http://www.promedmail.org>
ProMED-mail is a program of the
International Society for Infectious Diseases
<http://www.isid.org>

In this posting:
[1] Pennsylvania
[2] Oklahoma

******
[1] Pennsylvania
Date: Mon 25 Aug 2014
Source: KDKA [edited]
<http://pittsburgh.cbslocal.com/2014/08/25/lone-star-tick-can-cause-beef-allergy/>

It was just a small tick on her foot, just part of working in the
woods, the woman thought. "My husband took it off with a pair of
tweezers, didn't think anything else about it," she said. Then weeks
later, she woke up in the middle of the night swollen with hives and
unable to breathe. "They said I was probably 20 minutes from dying at
that point, so it was scary, one tick," she said.

Eventually, doctors figured out the woman had developed a severe food
allergy. That lone tick bite left her completely unable to eat red
meat. "It's actually called the unintentional diet," she said. "This
is to the point that if I didn't make those changes, I'd die."

Doctors are seeing more and more of this rare allergy, which is
actually not against the meat, but a sugar on red meat called alpha
gal. "It's very new. This disease is really first described in 2008,"
allergist Dr James DeAngelo said.

Alpha gal is also in the saliva of the biting tick, which is how the
allergy starts. All mammals carry the sugar, except primates. Humans
are primates, and therefore react against the sugar in other mammalian
meat. Steaks and burgers could cause a problem, but not chicken or
fish.

"It's also dose dependent. Unlike the peanut allergy, where even a
little drop can cause a reaction, in this case, it's very hard to
reproduce. In other words, the person has to consume enough beef to
produce an allergic reaction, and then you have to wait, [up to 8]
hours afterwards to confirm the reaction," Dr DeAngelo explains.

The Lone Star tick is seen mostly in the eastern and south eastern
USA. Its area is expanding and includes Pennsylvania. Dr  DeAngelo
says local tick analysis has not shown any in Allegheny County, though
residents have found the tick on themselves, but it's thought to be
brought from other areas.

The allergy can be confirmed with blood tests, though these aren't FDA
[Food and Drugs Administration] approved yet, and could be a big
out-of-pocket expense. There are no shots or tablets available for
densensitization. But the allergy can be self-limited. "Fortunately,
it does go away. In the majority of the cases, if the person avoids
future tick bites, it will gradually diminish over time," DeAngelo
said.


******
[2] Oklahoma
Date: Tue 26 Aug 2014
Source: CBS News [edited]
<http://www.cbsnews.com/news/oklahoma-man-develops-rare-allergy-to-red-meat-from-tick-bite/>

If you've been spending a lot of time outdoors and have suddenly
developed an allergy to red meat, you may want to check yourself for
ticks. The Lone Star tick can set off a potentially life-threatening
red meat allergy. That's what happened to an outdoorsman and arborist
from Tulsa, Oklahoma. He told CBS Tulsa affiliate KOTV that he didn't
remember any ticks biting him, but a severe allergic reaction after
eating a taco last fall prompted him to seek medical attention.
"Itching, hives, sweating, couldn't breathe, throat closed up," he
recalled the terrifying reaction.

Doctors can be slow to recognize the problem, and the man's trip to
the ER failed to provide him with answers. After a 2nd reaction to
eating a cheeseburger a few days later, the avid carnivore went to an
allergy clinic for testing. "They said, oh, well, you're allergic to
red meat. And I asked, I said, Are you sure you're looking at the
right person? Because that's what I've lived on my whole life. And
they said, Yeah, this is you," he said.

The Lone Star tick, found in the south and the eastern half of the
USA, carries a sugar called alpha-gal that humans don't have. This
sugar is also found in red meat, beef, pork, venison, rabbit, and some
dairy products. When the tick bites, it can trigger a person's immune
system to create antibodies to the sugar that, in turn, cause their
body to reject red meat, setting off a serious allergic reaction.

And, because the slightest cross contamination could be fatal, dining
out can become a matter of life and death for those affected. The man
is now restricting his diet to "fins" and "feathers," just fish and
poultry. "Seafood's not bad, but there's only so many ways you can
cook chicken and turkey," he said laughing.

This man, and others affected by the allergy, have reason to hope for
a time when they can reintroduce red meat into their diets. Doctors
have yet to confirm whether the allergy is permanent, and there is a
chance some people will grow out of it. But, be warned, if you get
another tick bite, the allergy will return along with the severe
symptoms.

Though this patient's reaction occurred almost immediately, the
symptoms can take up to 8 hours to show after ingesting red meat in
some cases. Allergic reactions can be treated with antihistamines to
ease itching. In case of an extreme reaction, the patient carries a
medicine kit with an epinephrine shot.

--
communicated by:
ProMED-mail
<promed@promedmail.org>

[It seems that in some tick-endemic areas, this association is being
increasingly recognized. One relevant study was published in 2011
[Commins SP, James HR, Kelly LA, et al. The relevance of tick bites to
the production of IgE antibodies to the mammalian oligosaccharide
galactose-alpha-1,3-galactose. J Allerg Clin Immunol. 2011;127:
1286-1293.] The abstract can be found in ProMED-mail: Lone star tick -
USA: link to meat allergy 20120623.1178567.

It has been known for several decades that an immunological reaction
occurs to tick salivary antigens in animals fed on by the tick.
Indeed, a large amount of research has been published regarding the
protection of humans and animals from tickborne diseases by
immunization with tick antigens which may block the ability of the
tick to transmit infection (for a review, see: Lee R, Opdebeeck JP.
Arthropod vaccines [in: New vaccines and new vaccine technologies,
Lutwick LI (editor)]. Infect Dis N Am. 1999;13: 209-226).

This study came about related to the monoclonal antibody cetuximab,
which is specific for epidermal growth factor receptor and was
approved for use in treating cancer in 2005. Subsequently, it became
clear that a significant number of treated patients were experiencing
severe hypersensitivity reactions during their 1st infusion of this
monoclonal antibody. Those reports appeared to be restricted to an
area of the southeastern USA, including Tennessee, North Carolina,
Arkansas, Virginia, and the southern half of Missouri. In 2007, a
detailed investigation of serum antibodies established that these
reactions were occurring in patients who had preexisting IgE
antibodies specific for the glycosylation on the Fab fragment of the
monoclonal antibody. The relevant oligosaccharide was found to be
galactose-alpha-1,3-galactose (alpha-gal), which is a blood group
substance of non-primate mammals.

Of note, the known distribution of the immediate reactions to
cetuximab was similar to the areas with high prevalence of Rocky
Mountain spotted fever and human ehrlichiosis. The authors of the
paper became aware of patients who thought that reactions to red meat
started after receiving multiple tick bites and were informed that
several allergists had reported to their local allergy meetings about
patients who had become allergic to meat after experiencing multiple
tick bites.

Diseases linked to _A. americanum_ include erlichiosis, tularemia and
STARI (Southern Tick-Associated Rash Illness,
<http://www.cdc.gov/stari/disease/>). Pictures of the lone star tick,
including one of engorging female _A. americanum_ ticks, can be found
at: <http://www.tickinfo.com/lonestartick.htm>.

It is increasingly clear that the same delayed (3-6 hours) IgE
mediated hypersensitivity from meat can be associated with other ticks
such as _Ixodes holocyclus_ in Australia (1) and _I. ricinus_ in
Sweden (2) and Spain (3); and not only can beef be an issue, but also
lamb, pork and game (1). Additionally, alpha-gal has been identified
in the gastrointestinal tract of ticks (2). The curious delayed nature
of a usually rapid onset immune reaction may be explained by the
slower absorption of the alpha-gal expressing glycoproteins
transported with dietary triglycerides (4).

References:
1. Van Nunen SA, O'Connor KS, Clarke LR, Boyle RX, Fernando SL. An
association between tick bite reactions and red meat allergy in
humans. Med J Aust. 2009;190: 510-511.
2. Hamsten C, Starkhammar M, Tran TAT, et al: Identification of
galactose-alpha-1,3-galactose in the gastrointestinal tract of the
tick _Ixodes ricinus_: possible relationship with red meat allergy.
Allergy 2013;68: 549-552.
3. Nunez R, Carballada F, Gonzalez-Quintela, et al. Delayed mammalian
meat-induced anaphylasis due to galactose-alpha-1,3-galactose in 5
European patients. J Allergy Clin Immunol. 2011;128: 1122-1124.
4. Saleh H, Embry S, Nauli A, Atyla S, Krishnaswamy G. Anaphylactic
reactions to oligosaccharides in red meat: a syndrome in evolution.
Clin Mol Allergy. 2012; 10(1):5.
- Mod.LL]

[See Also:
2013
---
Lone star tick - USA: link to meat allergy 20130614.1773380
2012
---
Lone star tick - USA: link to meat allergy 20120623.1178567
2006
---
Lone star tick - USA: New England 20060724.2038]

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are  posted,  but  the  accuracy  and  completeness  of  the
information,   and  of  any  statements  or  opinions  based
thereon, are not guaranteed. The reader assumes all risks in
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and  its  associated  service  providers  shall not be  held
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Saturday, September 6, 2014

Michael J Fox teams with Intel in PD research


Michael J Fox teams with Intel to use big data and wearables in Parkinson's research

Analysis Will track patient data and improve treatment
Thu Aug 14 2014, 13:03
INTEL HAS PARTNERED with The Michael J. Fox Foundation (MJFF) to improve research and treatment for Parkinson's disease through big data analytics and wearable devices.
The collaboration consists of a multi-phase research study using a big data analytics platform that detects patterns in data collected from patients via wearables, which monitor symptoms. Intel claims this will aid researchers and physicians to measure progression of the disease by capturing and objectively measuring patients' actual experiences and thus speed progress of breakthroughs in drug development, diagnosis and treatment.
Affecting about 5 million people worldwide, Parkinson's disease is the second most common nerve degenerative disease in the world. MJFF CEO Todd Sherer said that the major problem in diagnosing and treating patients is that we are still "subjectively measuring" Parkinson's disease in the same way doctors did when it was first described by Dr James Parkinson in 1817.
Read the full article:







Thursday, September 4, 2014

A comparison of Lyme disease serologic test results

A comparison of Lyme disease serologic test results from four laboratories in patients with persistent symptoms after antibiotic treatment.

Fallon BA, Pavlicova M, Coffino SW, Brenner C.

Clinical Infectious Diseases, online before print 2014 Sep 2. pii: ciu703.

http://doi.org/10.1093/cid/ciu703


Abstract

Background. As the incidence of Lyme disease (LD) has increased, a number of "Lyme specialty laboratories" have emerged, claiming singular expertise in LD testing. We investigated the degree of interlaboratory variability of several LD serologic tests—whole cell sonicate (WCS) enzyme-linked immunosorbent assay (ELISA), IgM and IgG Western blots (WB), and an ELISA based on the conserved sixth region of VlsE (C6)—performed at one university laboratory, one commercial laboratory and two laboratories that specialize in LD testing. 

Methods. Serum samples from 37 patients with post-treatment Lyme syndrome (PTLS), as well as 40 medically healthy controls without prior Lyme disease, were tested independently at the four laboratories. 

Results. In general there was little difference among the labs in the percentage of positive test results on the ELISAs and IgG WBs, although the number of discordant results was often high. When in-house criteria for positivity were used at the two specialty laboratories, specificity at one lab declined considerably on both the IgM and IgG WB. The CDC 2-tiered criteria improved overall concordance. At the two laboratories that performed the C6 ELISA, the percentage of positive tests was comparable to that of the WCS ELISA while providing higher specificity. The IgM WB performed poorly in our patient population of individuals with later stage illness, a result consistent with previous studies. 

Conclusions. While there was surprisingly little difference among the labs in percentage of positive results on most assays using CDC criteria, interlaboratory variability was considerable and remains a problem in LD testing.


http://doi.org/10.1093/cid/ciu703

[published in IDSA journal, late stage patients, what is said about antibody testing in that population, if anything]

Comment:

Here is a link for anyone who wants to download the full article:


https://www.yousendit.com/download/ZUcwWGJKTlFiR0pESjhUQw

 

Lab B in the study uses the same diagnostic criteria as iGeneX, so I’m guessing that Lab B is iGeneX. Or is there another lab out there that uses the same diagnostic criteria?


(I'll try to update this if I get an answer.)