Archive for the ‘research’ Category

Lyme/MSIDS and Psychiatric Illness

  Uploaded on Dec 24, 2016
Lecture to American Psychiatric Association NY Branch, Lenox Hill Hospital

This excellent video has Dr. Jane Marke discussing psychiatric illness in TBI patients, and while the technical lecture is given to psychiatrists it will be highly illuminating to patients.  If you only want to know about psychiatric symptoms associated with Lyme, skip to around minute 28.

Marke states,

“Many doctors are convinced that after a short course of antibiotics patients should be well. The huge number of people still ill years after a course of antibiotics belie this assertion.”

http://www.janemarkemd.com/services-provided/lyme-psychiatry/  Her website states:

“Patients with Lyme, and related tick-borne disease, can have symptoms which mimic every known psychiatric syndrome.  Treatment aimed directly at symptoms can relieve suffering rather quickly.  These symptoms include insomnia, anxiety, “brain fog”, obsessive-compulsive symptoms, depersonalization, depression, and rages.  But antibiotics are needed to undermine the root cause of the illness: the bacteria that causes Lyme: Borrelia burgdorferi.”

Other noteworthy comments:

15:12 – Marke describes the flagella of borrelia is more like the winged arms on a wine bottle opener which powerfully propels the organism.

15:40 – She questions if psychiatric disorders are inflammatory diseases.  She lists: Autism, Alzheimer’s, Schizophrenia, Bipolar, PTSD, Depression, Stress, Sleep Deprivation, Self-harm, and Suicid Attempts.  She also describes a study in England observing children for over a decade in which children with a high IL-8 at age 8 have an 81% change of developing depression by age 18 and a 2-fold chance of becoming psychotic.

18:04 – She states that TBI’s (Tick Borne Illness) causes an impaired Hypopituitary Axis (HPA) which on a chronic basis decreases cortisol and increases inflammation.  

20:40 – Neurotoxins in the brain contribute to mental illness by causing problems with Homosysteine metabolism, which supresses remethylation, but that apoptosis (cell death) which can be reversed by supplementing with SamE.

21:30 – She says Post Treatment Lyme Syndrome (PTLS) is like a “dog whistle,” and usually demonstrates a bias on behalf of the authors who believe that 3 weeks of antibiotics cures LD.  She then goes on to tell of a study that revealed that nearly 50% of those labeled as PTLS (with persistent symptoms) had anti-brain antibodies compared to 16.5% of Post Treatment Healthy Controls (no symptoms).

23:15 – She points out that the Lyme vaccine was taken off the market due to people getting sick from it not from “poor sales” as the cabal keeps saying.  http://www.nytimes.com/2002/02/28/business/sole-lyme-vaccine-is-pulled-off-market.html

25:34 – Babesia and Bartonella are of extreme interest to psychiatrists.

*Bartonella produces most of the psychiatric problems as well as photophobia, floaters, blurred vision, bone pain, pain in the soles of the feet, headaches, the hallmark rash that looks like stretch marks, migratory polyneuropathy (burning, weakness, and numbness, on both sides of the body that moves around) and POTS (a fast heart-rate when one goes from a lying position to a standing position).  Patients tend to exhibit OCD, self-mutilating behaviors, seizures, rage attacks, and psychosis (bipolar under this).  

https://madisonarealymesupportgroup.com/2011/09/25/the-bartonella-checklist-copyrighted-2011-james-schaller-md-version-11/  Dr. Schaller’s Bartonella Checklist

https://madisonarealymesupportgroup.com/2016/01/03/bartonella-treatment/

*Babesia patients present with day/night sweats, severe fatigue, and low blood pressure and exhibit anxiety, panic disorders, and depression.

https://madisonarealymesupportgroup.com/2011/09/25/the-babesia-checklist-copyrighted-2011-james-schaller-md-mar-version-20/  Dr. Schaller’s Babesia Checklist

https://madisonarealymesupportgroup.com/2016/01/16/babesia-treatment/

26:35 Persisting atypical and cystic forms drive local inflammation

28:23 Shows an excellent slide of the percentage of patients with late Lyme and various impairments such as Encephalopathy, memory issues, cognitive impairment, motor issues, and more.

31:15 She sites a study in which researchers set out to prove that there is no such thing as Late Lyme causing psychiatric problems.  Compared to controls, chronic lyme patients met criteria for adult onset ADHD (both inattentive type and hyperactive/impulsive types combined) more frequently.  She encourages doctors to take “syndromes,” and try to find an etiology, rather than the reverse, which is what is typically done.  In this specific case, she’s asking doctors to question and try to find solid reasons (etiology) why an adult would all of a sudden have ADHD.

33:30 She says TBI patients are the worst sleepers she’s encountered.  This is important because it is when toxins are cleared in the brain.

35:30 Depression is common in TBI patients.

36:50 She has an informative slide on suicides from those with Lyme collected from newspapers.

38:55 Shows a slide on Case studies of Intrusive Symptoms such as musical hallucinations, intrusive thoughts, Cognitive Tics, catastrophising, OCD.

40:00 Pediatric Auto-Immune Neurological Disorder (PANDAS) – caused by a lot of different organisms, including TBI’s, and it can also occur in adults.  These folks do extremely well on antibiotics or Immunoglobulin.  http://www.mercurynews.com/2014/04/19/misdiagnosed-bipolar-one-girls-struggle-through-psych-wards-before-stanford-doctors-make-bold-diagnosis-and-treatment/

http://www.pandasnetwork.org/understanding-pandaspans/ivig/

41:00 Depersonalization, Violence, self-harm, and schizophrenia can be a part of the picture with TBI’s. At 41:20 she tells the story of a little girl who would throw horrific temper tantrums in which she would destroy her room and then feel absolutely horrible after the fact.  She also had a psychotic episode.  Her MSIDS testing came back flagrantly positive.

42:21 Autism – There is vertical transmission of Lyme from mother to fetus.  Those with Bb in a study made remarkable improvement taking antibiotics.

42:56 Finding Spirochetes in Alzheimer’s patients as well as other pathogens.

https://madisonarealymesupportgroup.com/2016/04/10/bugs-causing-alzheimers/

https://madisonarealymesupportgroup.com/2016/08/09/dr-paul-duray-research-fellowship-foundation-some-great-research-being-done-on-lyme-disease/

https://madisonarealymesupportgroup.com/2016/06/03/borrelia-hiding-in-worms-causing-chronic-brain-diseases/

http://www.huffingtonpost.com/david-michael-conner/man-diagnosed-with-als-di_b_8891262.html

45:18 She points out the CDC guidelines and controversies, including the very poor testing and the vilification of small labs.  She recommends CLIA certified labs and that there is NO SUCH THING AS AN FDA APPROVED LAB.  She recommends IGeneX labs as they report the bands to you and uses more than 1 strain of Bb.

For more on IGeneX:  https://madisonarealymesupportgroup.com/2016/12/07/igenex-presentation/

48:17 She shows a SPECT scan with marked improvement after treatment with antibiotics for Encephalopathy.  She also states that minocycline probably crosses the blood brain barrier the best.

49:02 is a slide with supplements that directly help detoxification, inflammation, and more.  (vitamins, glutathione, LDN, herbs, diet, and compounds such as NAC, etc).  For info on LDN:  https://madisonarealymesupportgroup.com/2016/12/18/ldn/ and on NAC: http://www.lifeextension.com/magazine/2010/5/n-acetyl-cysteine/page-01

50:40 Marke asks psychiatrists with treatment resistant patients to consider microbes.

For more information on psychiatric Lyme: https://madisonarealymesupportgroup.com/2015/10/18/psychiatric-lymemsids/

For a great article for on-line counseling:  https://www.ruschellekhanna.com/onlinetherapy

Category:

Lyme, Lyme Vaccine, Psychological Aspects, research, Testing, Treatment

Lyme Science Owned By Good Ol’ Boys

http://www.huffingtonpost.com/entry/flunk-the-lyme-test-just-wait-and-get-sicker_us_5873ef2fe4b08052400ee537?timestamp=1483994986602

According to Mary Beth Pfeiffer, an investigative journalist writing the book, “The First Epidemic,” which is about ticks and the diseases they carry, scientific debate on tick borne illness is tightly controlled by a cabal – most of which work at the CDC.

For patients, patient advocates, and medical practitioners trained by ILADS (The International Lyme and Associated Diseases Society) this is nothing new.

However, now Sin Lee, a pathologist and scientist who directs Milford Molecular Diagnostics, is speaking out about it as he has received numerous publication rejections when he attempted to rebut the oft repeated dogma that has ruled the medical world for decades regarding tick borne illness.

Lee believes the current standard advises doctors to take a “wait and see” approach and postpone treatment in patients until diagnosis can be confirmed by serologic tests.

True to form, Paul Mead of the CDC, denies, denies, denies this.

The specific article Lee rebuts https://www.ncbi.nlm.nih.gov/pubmed/27976670 makes it crystal clear that a positive test is “required” without the rash, which the CDC’s website states happens in 60-80% of cases, but other sources and my own personal experience as an advocate claim is much less. In fact, research shows those getting the EM rash to be highly variable – anywhere from 25%-80%. In this first ever patient sample, only a quarter got the rash: 1976circularletterpdf  https://www.lymedisease.org/lymepolicywonk-how-many-of-those-with-lyme-disease-have-the-rash-estimates-range-from-27-80-2/

The Steere article which advocates a positive test before treating also says that in days to weeks spirochetes can spread everywhere.

Huh?

Even the CDC website states patients have symptoms before it has disseminated.

In other words, you win the lotto if you get the rash. If you don’t, well……

Running it to ground, Lee wrote that Steere, Mead, and colleagues “glossed over” the currently accepted testing that, “by design misses early cases” and requires patients to be tested twice, wasting valuable time. Lee says DNA sequencing that has published science behind it, should be used instead. https://www.ncbi.nlm.nih.gov/pubmed/20231610 and https://www.ncbi.nlm.nih.gov/pubmed/21040573. Lee went to international journals and was published after the U.S. Cabal’s rejection.

Lee isn’t alone.

Marcia Herman, Giddens, adjunct professor at Gillings School of Global Public Health at the University of North Carolina states,

“There has never been a well-designed study to examine this issue,” in regard to 80% getting the EM rash.

Christian Perronne, physician on the infectious diseases faculty at the University of Versailles-St Quentin, France, states,

“If you try to publish a little bit different from the guidelines, it’s anti-science.”

And, Lyme literate physician Raphael Stricker goes on record,

“The primer propagates one of the biggest myths about Lyme disease diagnosis instead of acknowledging the dreadful state of 30-year-old Lyme serology and the need for better testing.”

It doesn’t get any clearer than that.
But wait – yes it does.

Benjamin Luft, one of the physicians who wrote the original Lyme guidelines in 2000 admitted that he now agrees that Lyme disease can persist making it infinitely more difficult to treat as time progresses and that The Cabal’s continual emphasis on “false positives” is a red herring – and that early treatment has great benefit.

And lastly, Pffeifer spoke with Raymond Dattwyler, a 1994 CDC panelist that helped write the LD guidelines, who stated,

“Twenty years ago I would’ve said they’re fine. Now I say, ‘oh shit, we were wrong.’ It doesn’t look as good as we thought it was.”

Well, that’s comforting.

Please go here to read about other members of this Cabal who will attack anyone who defies the accepted narrative.  They all have severe conflicts of interest.

Category:

Lyme, research, Testing

Tick Related Red Meat Allergy Found in Minnesota & Wisconsin

http://www.mprnews.org/story/2017/01/12/tick-triggered-meat-allergy-northern-minnesota  (Click here to listen to the audio – approx. 3.5 min)

The Lone Star tick is supposed to stop dead in its tracks below the Iowa border but increasing numbers of people are being bitten by ticks and developing the red meat allergy (alpha-gal allergy) usually pinned on the Lone Star tick.

What gives?

According to Dr. Alaaddin Kandeel, an allergist at Essentia Health in Duluth, he’s diagnosed 18 patients with alpha-gal allergy – 10 from northeast Minnesota and 8 from northwest Wisconsin – hardly accepted Lone Star territory.  In the audio he states he diagnoses approximately 1 patient per month with Alpha-gal allergy and that the reactions can be severe, from passing out to life-threatening reactions.

And he’s not alone.  Dr. Chris Cleveland, also an allergist but in North Dakota, has also discovered alpha-gal allergy in his Minnesota patients.

Elizabeth Schiffman, epidemiologist at the Minnesota Department of Health says they get:

“sporadic reports of lone star ticks, but we don’t know of any established populations because when we’ve gone out and done our routine tick surveillance, what we really find are wood ticks….and then those black legged ticks, or the deer ticks.”

And while tick borne diseases are reportable by law in Minnesota, allergies like the alpha-gal allergy are not, so there really is no way to know how many are affected.

Is something other than the lone star tick causing the allergy?

Scott Commins, one of the researchers who first identified alpha-gal, states that researchers may be guilty of pigeonholing the allergy on the lone star tick due to the fact that there are now patients with alpha-gal allergy from all over the world where a variety of ticks are found.  His current work is trying to identify what is in the tick bite that is causing the allergy.

He does have a hypothesis.

He feels that perhaps when the tick bites an animal that already carries the alpha-gal carbohydrate, something in the tick’s saliva triggers an allergic reaction when it then bites a human.  He also feels genetic factors play a role.  He states,

“We know that in some patients the allergy fades over time. There are others where this appears to be long-lasting,” he added. “The issue is we don’t know what defines the groups or how to predict who will end up in each group at the outset. It may depend on further tick bites.”

Another challenge is that the reaction happens hours after eating so patients don’t make the connection, and according to Commins it causes painful stomach cramps but not the usual itching hives that allergies are known to cause.

However, Suzanne Keithley-Myers, the woman featured in the story had hives that made her want to “claw her flesh,” as well as stomach pain that made her fear for her life.

Alpha-gal allergy was discovered 7 years ago and now there are several thousand patients diagnosed with it.

Commins also states:

“I don’t want to alarm people, but I do feel that there probably is legitimate concern that this may be something that is the tip of the iceberg (in Minnesota) with the cases that you have at the moment.”

Category:

research, Ticks

Help Lyme Research Agenda

https://www.lymedisease.org/lymepolicywonk-help-shape-top-10-survey/  by Lorraine Johnson, JD, MBA, and Chief Executive Officer of LymeDisease.org.

Help Shape Top 10 Priorities for Lyme Research Agenda by Taking Our Survey  

(Click on link above to take survey)

Today, LymeDisease.org launches a survey of 25 research questions for the community to vote on and prioritize. The answers will be used to develop a research agenda for the Lyme community which will be publicized and used as a tool to give patients a voice in the funding of research. The ultimate goal is to ensure that research that matters to patients is funded.

It’s a fact of life that scientists often pursue research questions for their own reasons. Sometimes it’s a pet theory. Other times it may be aligned with a commercial prospect or research that may further their career. Unfortunately, those reasons don’t necessarily line up with the priorities of the people who have the most at stake in the outcome of that research—critically ill patients who are waiting for a cure.

A recent British Medical Journal article by Sally Crowe who works with the James Lind Alliance in the UK explains why patient-driven research agendas should be the foundation of funding grants:

“The …objective of . . . health research is to improve the health outcomes of patients. Our findings show a critical gap between current research and what patients considered to be high priority, and may reflect the lack of patient engagement in research priority setting.”

Our survey is the next step in a process launched in November 2015 at the American Association for the Advancement of Science (AAAS) in Washington D.C. Fifty Lyme disease experts participated in the conference—including 23 patients, 17 researchers, and 10 clinicians. Kristen Honey at the White House orchestrated the convening. LymeDisease.org was given the lead in developing the research question prioritization process and three of its board members spoke at the conference. I was fortunate to participate on a big data panel, with Dr. John Aucott, and D.J. Patel, White House Chief Data Scientist, and announce the launch of our big data project, MyLymeData.

Many physicians from the International Lyme and Associated Diseases Society, including Drs. Ken Liegner, Sam Shor, Chris Green, and Betty Maloney attended. Participating researchers included Drs. John Aucott, Ying Zhang, Nevena Zubcevik, and Cheryl Koopman, Patient community leaders included Phyllis Mervine, Jill Auerbach, Pat Smith, and others.

A series of short presentations sparked debate and dialogue among those attending and ultimately resulted in a preliminary list of research priorities. The decision could have ended there, in the hands of 50 people. However, the goal was to submit the research agenda to the community at large to ensure broad, inclusive participation from the community for those who did not attend the conference.

After last year’s kick-off conference, over 1,000 MyLymeData participants ranked the importance of the preliminary questions and suggested new questions to include on the list. We are now asking for your help in the final step of prioritizing the questions.

This will help us understand which questions are most important to patients, carers, families, researchers, and healthcare professionals for future research.

Please take part if you or a loved one has Lyme disease, or if you are a clinician working with Lyme patients, or a scientist conducting Lyme disease research. Organizations representing the interests of people with Lyme disease may also participate.

Our process is loosely based on that of the James Lind Alliance, which brings clinicians and patients in the UK together to establish research priorities. The James Lind Alliance process typically involves a number of in-person meetings and takes two or more years. We are using technology to amplify the patient’s voice and increase the reach of the survey to include patients who were not involved in the initial meeting.

If you want further inspiration on what’s important for research, we recommend that you take a look at a guest blog by Lyme patient Sherrill Franklin giving her views.

The survey takes roughly 5-10 minutes to complete. Please take the survey so your voice can be counted!

Crowe S, Giles C. Making patient-relevant clinical research a reality. BMJ. 2016;355.

The LYME POLICY WONK blog is written by Lorraine Johnson.  You can contact her at lbjohnson@lymedisease.org. On Twitter, follow her @lymepolicywonk. If you have not signed up for our patient-centered big data project, MyLymeData, please register now.

 

Category:

Activism, research

Dentistry Furthering Lyme Research

https://www.utoronto.ca/news/how-bacteria-invade-u-t-research-sheds-light-age-old-mystery

Senior author and researcher Tara Moriarty, assistant professor at the Faculty of Dentistry and the Department of Laboratory Medicine and Pathobiology, Faculty of Medicine at the University of Toronto, has not only discovered live-imaging where the team has watched borrelia in the blood stream use ‘catch bonds’ and ‘tethers’, to survive being swept away with the force of blood, they have also found bone loss in mice directly correlated to the bacterial load of Borrelia burgdorferi (Bb) found in the bones.  http://iai.asm.org/content/early/2016/12/08/IAI.00781-16.abstract  It also took only four weeks to advance to Osteopenia – a condition that leads to osteoporosis.

https://www.utoronto.ca/news/u-t-researchers-find-ancient-iceman-s-infection-helps-lyme-disease-bone-loss-discovery  They also found that while Otzi the ice-man did not die from complications from Bb, these same researchers feel he might have suffered bone loss as a result of having Lyme Disease.  

“Bone pain has been reported since Lyme disease has been studied, but it’s not something that has been investigated,” said Tara Moriarty.

The findings suggest that it may be wise to monitor bone loss in patients with Lyme Disease.

“We need to know how long the osteopenia lasts after bacterial infection, and whether it progresses to osteoporosis,” added Moriarty.

 

Category:

Lyme, research