Archive for March, 2018

March 2018 Support Group Meeting Reminder

Don’t forget our next meeting is Saturday, March 31, from 2:30-4:30 at Pinney Library.

The featured speaker will be Raymond Yingling of Madison Laser Therapy.  Yingling uses a class IV laser, which is a high intensity laser with many health benefits.  For more info:  https://madisonarealymesupportgroup.com/2018/02/27/march-2018-support-group-laser-therapy/

Australian Lyme Disease Research Pilot Funded

https://zcs1.campaign-view.com/ua/SharedView?od=11287eca5f4210&cno=11a2b0b1e77eaf2&cd=11ad775b8721b5b4

120884000001734046_zc_v2_researcher

MEDIA ALERT

Australian Lyme disease research pilot funded

The Lyme Disease Association of Australia (LDAA) is currently funding a new patient focused pilot research study which is taking place here in Australia. The project aims to test clinical samples from patients, embracing an innovative method for the diagnosis of vector borne infections including those from tick bites.

LDAA CEO Ms Whiteman said,

‘Australians who are desperately unwell after a tick bite have waited years for credible research to uncover what is making them sick. This is an extremely exciting project and we believe the results could be ground-breaking.’

‘LDAA received a research grant from the Country Women’s Association (CWA) of NSW and we are delighted to be able to support this research. It is evident the researchers are actually working towards gaining new insights that will help patients receive a reliable diagnosis for this terrible disease. We are hopeful this innovative approach will turn things around for patients.’

The study utilises a proprietary capture methodology that has not previously been employed in the detection of tickborne pathogens in Australia.

The researchers undertaking this project have extensive experience in the fields of microbiology, research science, infectious diseases, auto-immune conditions, and public health. With research previously published in the Emerging Infectious Diseases Journal, a prestigious international journal, they form a formidable team. The lead researcher has worked in the vector borne infectious disease discipline for many years.

Vectors are living organisms that can transmit infectious diseases between humans or from animals to humans. Many of these vectors are bloodsucking insects, which ingest disease-producing microorganisms during a blood meal from an infected host (human or animal) and later inject it into a new host during their subsequent blood meal. Mosquitoes, ticks and fleas are the best-known disease vectors. Vector borne diseases include Lyme disease, malaria and dengue fever.

The study results will be submitted for publication in peer reviewed journals with wide readership by Australian medical practitioners. Ms Whiteman said,

‘Evidence of what is making Australians sick after a tick bite could change the lives of thousands of patients who are currently falling through the cracks in this evidence-based policy world.’

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Photo library: https://www.facebook.com/LymeDiseaseAustralia/photos.

More information: Access the Lyme Disease Association of Australia’s Media Kit.

For any other information you require please contact the Lyme Disease Association of Australia Media Team via email media@lymedisease.org.au or 0406 378 792
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Regards,
Marie Huttley-Jackson
Lyme Disease Association of Australia Media Team

For Lyme Disease Awareness & Action
Lyme Disease Association of Australia
PO Box 137, Stockton NSW 2295
E: media@lymedisease.org.au
W:www.lymedisease.org.au/media

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For more:  https://madisonarealymesupportgroup.com/2017/09/19/tbis-in-australia/

https://madisonarealymesupportgroup.com/2016/11/03/ld-not-in-australia-here-we-go-again/

 

Altered DNA Methylation, Mental Illness, & Lyme/MSIDS

https://www.nature.com/articles/s41537-018-0047-7

Altered DNA methylation associated with a translocation linked to major mental illness

Published online March, 2018
Daniel L. McCartney, Rosie M. Walker, Stewart W. Morris, Susan M. Anderson, Barbara J. Duff, Riccardo E. Marioni, J. Kirsty Millar, Shane E. McCarthy, Niamh M. Ryan, Stephen M. Lawrie, Andrew R. Watson, Douglas H. R. Blackwood, Pippa A. Thomson, Andrew M. McIntosh, W. Richard McCombie, David J. Porteous & Kathryn L. Evans
npj Schizophrenia volume 4, Article number: 5 (2018)
doi:10.1038/s41537-018-0047-7
Abstract
Recent work has highlighted a possible role for altered epigenetic modifications, including differential DNA methylation, in susceptibility to psychiatric illness. Here, we investigate blood-based DNA methylation in a large family where a balanced translocation between chromosomes 1 and 11 shows genome-wide significant linkage to psychiatric illness. Genome-wide DNA methylation was profiled in whole-blood-derived DNA from 41 individuals using the Infinium HumanMethylation450 BeadChip (Illumina Inc., San Diego, CA). We found significant differences in DNA methylation when translocation carriers (n = 17) were compared to related non-carriers (n = 24) at 13 loci. All but one of the 13 significant differentially methylated positions (DMPs) mapped to the regions surrounding the translocation breakpoints. Methylation levels of five DMPs were associated with genotype at SNPs in linkage disequilibrium with the translocation. Two of the five genes harbouring significant DMPs, DISC1 and DUSP10, have been previously shown to be differentially methylated in schizophrenia. Gene Ontology analysis revealed enrichment for terms relating to neuronal function and neurodevelopment among the genes harbouring the most significant DMPs. Differentially methylated region (DMR) analysis highlighted a number of genes from the MHC region, which has been implicated in psychiatric illness previously through genetic studies. We show that inheritance of a translocation linked to major mental illness is associated with differential DNA methylation at loci implicated in neuronal development/function and in psychiatric illness. As genomic rearrangements are over-represented in individuals with psychiatric illness, such analyses may be valuable more widely in the study of these conditions.
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This study links to Lyme/MSIDS in more than one way.
  • First, many Lyme/MSIDS patients have methylation problems and can not detox properly.  Imagine a kitty litter box that never gets cleaned out.  That’s what happens inside a body that can’t clear itself of debris.
  • Second, many Lyme/MSIDS patients have mental health issues:  https://madisonarealymesupportgroup.com/2017/10/24/the-lyme-wars-faces-of-the-health-crisis-a-digital-documentary/  (5-Part Series showing how Lyme/MSIDS manifests)
  • Third, Lyme/MSIDS mimics methylation problems and vice versa.  One of the challenges of treatment is teasing out what is active infection(s) and what is a methylation problem.

https://suzycohen.com/articles/methylation-problems/  Pharmacist Suzy Cohen states 100’s of diseases are the result of methylation problems, including Lyme, chronic viral infections, schizophrenia, Dementia/Alzheimer’s, addictive behavior, insomnia, cancer, and more.

While methylation problems do not directly cause Lyme (it is caused by a pleomorphic bacteria called borrelia) it causes severe symptoms due to the inability to clear infections & their by-products, as well as repairing the damage they cause.

Methylation also helps you clear toxins such as hormones from chemicals, and rogue neurotransmitters that can cause seizures, anxiety, rage, and insomnia.

If you are extremely sensitive to medicine you probably have a methylation problem.  Cohen also states that while some of this stems from genetics, there are other reasons for it such as a lack of the following vitamins:

  • Zinc
  • B2/riboflavin
  • Magnesium
  • B6/pyridoxine
  • B12/methylcobalamin
  • Folate (from food or folinic acid)

1) Poor diet, poor probiotic status, digestive issues, medications, medical conditions like Crohn’s or Celiac, and other genetic traits may cause any or all of these nutrient deficiencies.

2) Xenobiotics – which are chemicals found in our air, water, food, home, work, schools, parks, beds, cosmetics and more.

3) Taking medications that are drug muggers that deplete you of the nutrients in #1 above. Some of the worst offenders (in terms of stealing your methylation nutrients) are methotrexate, metformin, antacids, acid blockers, proton pump inhibitors, corticosteroids, estrogen-containing drugs and nitrous oxide.

4) Drinking alcohol will pretty much shut down your methylation and wipe out your glutathione stores.

5) Green coffee bean extract is incredibly high in catechols and those use up your methylation pathway nutrients fast!

7) If you have Lyme disease, and many people do whether they know it or not, the Borrelia burgdorferi germ uses up all your magnesium (this supplement is a unique and highly absorbable form) to make biofilms and hide. Low mag reduces your ability to methylate. As an aside, this explains why some ‘Lymies’ have bad reactions during antibiotic treatment. Those drugs kill the organism but then your body is faced with poison such as ‘dead bug parts’ as well as ammonia which spikes when Borrelia dies off. Point is, you can’t remove easily the toxins from your body and it backs up in your system (by christopher at www.dresshead.com). If this is you, then use really low doses if you have to take antibiotics, until you’ve opened up your methylation (and other detoxification) pathways.

8) If you take nutrients that deplete methyl groups (like high dose niacin, or the prescription version of that called Slo-Niacin and Niaspan).

9) Heavy metals (think mercury in your diet, or your teeth) or lead in your bloodstream, cadmium if you smoke, high copper, arsenic, etc.

10) High levels of acetylaldehyde, this is a potent neurotoxin released by Candida, and also a by-product of drinking alcohol (even red wine). Don’t drink if you’re a poor methylator. Most of you know who you are, meaning you are a lightweight when it comes to alcohol. Yep, it is likely you are a poor methylator. I will share more about the Candida toxin known as “acetylaldehyde” shortly.

12) Anxiety or a lot of stress. I’m not sure why, but a pessimist or “I can’t do it” kind of outlook seems to make things worse. I think it has to do with your belief systems and how they impact your genes. In my summary, I’ll give you some links to an author and lecturer that has clues on how to change your outlook. (Dr. Bruce Lipton).

Please see Cohen’s article for options if you suspect a methylation defect:  https://suzycohen.com/articles/methylation-problems/

 

ME/CFS Summit – “Test for Lyme”

https://www.medscape.com/viewarticle/893766?nlid=121255_4503&src=wnl_dne_180313_mscpedit&uac=166940EN&impID=1580105&faf=1#vp_1

Much Can Be Done to Ease ‘Chronic Fatigue Syndrome’ Symptoms

Miriam E. Tucker, March 12, 2018

SALT LAKE CITY, UT — The illness commonly known as chronic fatigue syndrome is complex and currently incurable, but clinicians can still do a great deal to manage symptoms and improve patients’ quality of life, experts agree.

In a 2-day meeting held March 2 and 3, 2018, specialists in the condition, now termed myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), met to discuss their assessment and treatment approaches. The aim of the “summit,” organized by Lucinda Bateman, MD, and held at her Bateman-Horne Center facility here, was to initiate development of expert consensus ME/CFS guidance for primary care and specialist clinicians, and to identify research priorities to address major knowledge gaps.

“One of the messages I’d like to send to physicians is not to have an all-or-nothing approach to this illness, but to break it down into its parts, and see what you can get hold of with the history, objective markers, and clinical intuition. And then, it’s not unreasonable to try some things that are not harmful or expensive,” Bateman told Medscape Medical News.

The 13 panelists, who hail from primary care, infectious disease, immunology, neurology, endocrinology, pediatrics, and integrative medicine, discussed and prioritized elements of history-taking, physical exam findings, diagnostic tests, and treatment approaches for each of the illness’ major components. The core features include fatigue, impaired function, postexertional malaise, sleep dysregulation, neurocognitive impairment, and orthostatic intolerance; other commonly reported features are widespread pain, immune dysregulation, and infection.

Panel members focused on approaches they have found to be most helpful and that can be accomplished in primary care, as well as more advanced modalities that would be more feasible in specialty practices.

Assessing the Illness

The document the group produces will endorse the 2015 Institute of Medicine diagnostic criteria, which defineME/CFS as 6 months of unexplained fatigue with substantial functional impairment, postexertional malaise, unrefreshing sleep, and either cognitive dysfunction or orthostatic intolerance. The symptoms must be moderate to severe and present at least 50% of the time. (Five summit participants, including Bateman, were on the writing committee for that report, and three others served as reviewers for it.)

Assessing functional capacity is key, Bateman said.

“It’s an illness that impairs people’s ability to function in their daily lives. Clinicians need to ask about function, and what happens when people exert themselves both physically and cognitively.”

One revealing question is, “What would you be doing now if you weren’t ill?” Typically, as opposed to depressed patients, those with ME/CFS will have a laundry list. “Our patients are trapped in bodies that don’t work,” Bateman said. “They’re desperate to do more.”

Laboratory tests such as complete blood count with differential, complete metabolic panel, erythrocyte sedimentation rate and C-reactive protein, antinuclear antibody, rheumatoid factor, lipid panel, thyroid-stimulating hormone, and celiac screen should all be performed to investigate symptoms, but are often unhelpful. (As reported previously by Medscape Medical News, evidence suggests that the inflammatory cytokines involved in ME/CFS are different from those that induce C-reactive protein.)

In contrast, assessments that often yield valuable information in patients with ME/CFS include evaluation for orthostatic intolerance and autonomic dysregulation (ideally via tilt-table, but also can be accomplished with the 10-minute “Lean” test), and laboratory tests for Lyme immunoglobulin G (IgG) and IgM;lymphocyte subsets; IgG subclasses; Epstein-Barr virus, including early antigen antibody; herpes viruses; urine or serum markers of mast cell activation syndrome; small intestinal bacterial overgrowth; and natural killer cell function (almost universally low in patients with ME/CFS).

Brain imaging with magnetic resonance imaging or electroencephalography may be indicated in patients who exhibit “brain fog,” headaches, or other neurocognitive symptoms.

“A lot of the testing we do is the differential diagnosis, and we’re looking for comorbid conditions, treatment targets, and subgroups, like people with [small intestinal bacterial overgrowth] or mast cell activation. In the clinical setting, we don’t have to make sense of it all. We just have to identify it, and see if the patient responds to treatment,” Bateman said.
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What is Air Hunger, Anyway?

https://globallymealliance.org/air-hunger-anyway/

WHAT IS AIR HUNGER, ANYWAY?

By Jennifer Crystal MARCH 22, 2018

CHRONIC LYME DISEASE & ITS CO-INFECTIONS, LIKE BABESIA, CAN PRODUCE UNIQUE SYMPTOMS. ONE OF THEM IS REFERRED TO AS AIR HUNGER.

When I tell people I have chronic Lyme and some of its co-infections, they often look at me quizzically and ask: “What’s a co-infection?” I explain that in addition to Lyme ticks can transmit other diseases as well. I get an understanding nod until I say the names of the diseases. Rarely have people heard of them: Babesia, Ehrlichia, and Bartonella. One of my graduate school professors got so tired of trying to say “Babesia” that he jokingly renamed it “babelicious.”

I get a similar reaction when I tell people that a chief symptom of Babesia is air hunger. Some hear the term and think of marathon runners or asthma patients. Most really have no idea what it actually means. Literally, it means to be hungry for air. But how is that related to Babesia, and what does the symptom actually entail?

Babesia is a parasite that eats the oxygen in red blood cells. This result is low blood oxygen levels in the body. When you are hungry for food, your stomach might grumble, and you might feel a gnawing or emptiness, a craving for sustenance. You might become lightheaded or even faint. The same is true when your blood is hungry for oxygen, except you feel the hunger in your cells rather than in your stomach.

You know when exercising how you can feel your blood pumping, whereupon endorphin release makes you vivacious and energized? That feeling when your muscles are a little tired from running or biking, but you’re also exhilarated, hitting that “runner’s high” when you feel like you can do a million jumping jacks?

I used to feel that, too. I used to ski for eight hours in the back bowls of the Rocky Mountains, bouncing through mogul fields with reckless abandon. And at the end of the day, my body would be loose and limber. I was tired, sure, but it was nothing that a good meal and a good night’s sleep couldn’t fix. The next morning, I’d be ready to ski again.

Then I got Lyme, Babesia, and Ehrlichia. At first, before the illnesses were properly diagnosed, I simply noticed that I couldn’t keep up with my fellow skiers as I used to. I tired more easily, needed more breaks, and often experienced blood sugar crashes and lightheadedness after a particularly intense run. Skiing at a high altitude means there’s less oxygen available, to begin with, but what I didn’t know was that a blood parasite was also compromising my oxygen levels.

As the tick-borne illnesses slowly took over my body, my post-exertional fatigue and hypoglycemia increased. Sometimes I’d experience these symptoms when I was simply walking down the street. I started to get terrible migraines, always after exercise but sometimes just after a long day of teaching, and sometimes for no apparent reason at all. What I didn’t know was that the oxygen level of my red blood cells was getting lower and lower, causing these debilitating symptoms.

One day towards the end of my second year of teaching in Colorado, I tried to go for a short hike near my apartment. I barely made it a few feet up the dirt path before I found myself gasping for air. I wanted to take a deep breath, but couldn’t get one. As I clutched my chest, another hiker asked if I was okay. “Asthma,” I wheezed, even though I’d never experienced that condition before.

A doctor did diagnose asthma but didn’t explain the sudden onset. He didn’t realize that my gasping for breath was a literal manifestation of air hunger caused by Babesia. Instead, he gave me an inhaler, which I sometimes needed to use in class; in the middle of a lecture, I would get so lightheaded and short of breath.

Later, when I was finally diagnosed with and treated for tick-borne illnesses, I experienced Herxheimer reactions so bad that skiing, hiking and even walking became activities of the past; I could barely get up a flight of stairs. Often my arms and legs would feel jumpy like I was having a panic attack. This is because they weren’t getting enough oxygen; the jumpiness was their way of “grumbling” like a stomach does when it needs food. My limbs felt, how can I put this? They felt empty, the opposite of the way they used to feel when they were pumped full of healthy oxygenated blood during exercise. I wanted to take a deep breath and send the air right to my limbs, right to my cells, to re-invigorate them, but I couldn’t.

Overeager during treatment, I started physical therapy too soon, and paid for it. A mere thirty seconds on a stationary bike left my limbs gasping for air. It seemed like a thick molasses was seeping through my whole body, weighing me down. A heavy sensation crept into my head, filling it with pressure until I was overtaken by a full-blown migraine. After, I was in bed for a week.

The good news about that experience is that it told my doctor I needed to increase my Babesia treatment. Anti-malarial medication got me back on my feet, eventually back on the stationary bike, and, finally, back on my skis. I don’t think I’ll ever be able to bounce through moguls for eight hours at a time again, but I can ski a full morning without getting air hunger. I can paddle-board or canoe for hours. Sometimes, when I push myself too hard, I feel a tightening in my chest for a day or two after exercise. And sometimes I begin to feel air hunger in my cells as I’m walking around the city, getting that jumpy feeling in my limbs when I climb a flight of stairs or get a headache shortly after exercise. This tells me that it’s time to increase the homeopathic drops I now take to keep Babesia at bay.

Now I can say to my doctor, “I’m starting to feel some air hunger,” and he knows exactly what we need to do. Hopefully, this explanation will be a revelation for those readers who, like me, were so long perplexed by this frightening undiagnosed symptom.

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

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**Comment**

Great example of a nasty Babesia symptom.  My husband struggled particularly with the blood sugar crashes that could come on at any time, necessitating his keeping protein bars with him at all times.  He would literally begin shaking.  It was a frightening symptom that thankfully passed with treatment.

Besides air hunger, Babesia is known to cause horrific headaches and dizziness as well as chest pressure.  The good news is proper treatment will alleviate and often eliminate these symptoms, but doxycycline won’t do it.  You need proper anti-malarial drugs to kill this monster.