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We will have a support group meeting this Friday (Sept 30) from 5:30-7:30p.m. at Pinney Library in Madison.  

Hope to see you there!

http://www.nwahomepage.com/news/local-clinic-denies-a-mom-medical-treatment-for-kids-with-lyme-disease?platform=hootsuite

Local Arkansas woman, Alarie Bowerman, recently pulled more than 20 ticks off her three children after a girl scout trip.

“They had the classic symptoms, they had the bulls eye rash, they had the joint pain, they had fevers and had flu like symptoms, yet we were denied treatment for at least two of them and I don’t understand how this is legal,” said Bowerman.

Two of the girls have a positive test result for Lyme Disease taken at Northwest Arkansas Pediatric Clinic, but the clinic told Bowerman it was likely a false positive and referred her to the Arkansas Department of Health.

According to Dr. Naveen Patil, Director of the Infectious Disease Program, ADH,

“We don’t have Lyme Disease in Arkansas, we have the ticks that transmit Lyme Disease but we don’t have any recorded cases of Lyme Disease.” 

Bowerman also received a letter from the clinic stating doctors would no longer treat her children because she consistently questioned their medical advice and recommendations.

Can you blame her?

C-diff and Anthelmintics

http://patient.info/health/clostridium-difficile-leaflet
MSIDS (multi systemic infectious disease syndrome – or Lyme with friends) patients visibly wince at the mention of C-diff (Clostridium difficile), a bacteria found in the gut that can force you to quit your treatment. For some, it can cause life-threatening inflammation of the bowel.

The challenge with C-diff is the spores which can be quite resistant. These spores can stay on surfaces for years and spread in the air when disturbed – such as when someone changes the sheets that an infected person has slept in. They can also get into food and other objects particularly if the infected and/or carriers of the spores don’t wash their hands properly.

To healthy folks this posses little to no risk of infection, but if your immune system is weakened due to an infection such as MSIDS, and then you are taking antibiotics to fight the infection, you are more likely to get C-diff than a healthy population due to the changes in the gut which upset the balance of healthy vs unhealthy bacteria.

While the majority of cases occur in health care settings such as hospitals, MSIDS patients are at risk because the antibiotics that are found to lead to C-diff infections are broad-spectrum antibiotics most commonly used in MSIDS treatment such as fluoroquinolones, cephalosporins, penicillins, and clindamycin. Also, using multiple antibiotics over a long period of time, (which is precisely a common treatment for chronic MSIDS infection) increases your risk as does taking proton pump inhibitors to reduce stomach acid.

http://www.mayoclinic.org/diseases-conditions/c-difficile/symptoms-causes/dxc-20202389
Common symptoms include watery diarrhea 3-4 times a day for 2 or more days and mild abdominal cramping and tenderness

Severe symptoms include watery diarrhea 10-15 times a day, severe abdominal cramping and pain, rapid heart rate, fever, nausea, dehydration, loss of appetite, weight loss, swollen abdomen, kidney failure, and increased white blood cell count.

http://patient.info/health/clostridium-difficile-leaflet
Currently people with C-diff are given an antibiotic such as vancomycin or metronidazole and should have their own room and toilet facilities, making sure to wash hands, toilets, bedpans, bedding, surfaces, and floors often. Caregivers should wear disposable gloves and aprons, washing hands with soap and water before and after attending the infected. Hand gel may not kill the spores.

Unfortunately, there are cases where the standard antibiotics, even Fidaxomicin, a non-absorbed antibiotic with high selectivity to C-diff, also found to inhibit toxin and spore production, didn’t work. There is concern of antibiotic resistance.

http://www.medicalnewstoday.com/releases/224359.php, and http://www.medicalnewstoday.com/articles/251759.php
Somewhat new are fecal transplants, in which feces from a donor are processed in the lab and then injected into the small intestine and right side of the colon. These procedures, performed by only a few doctors nationwide, have proven effective, but some worry about unknown risks.

If you don’t own a jet and aren’t quite ready to introduce someone else’s poop into your body, there’s good news on the horizon.

http://www.nature.com/articles/srep33642
Researchers at Scripps Research Institute in San Diego, CA, have found that salicylanilides, commonly used to deworm sheep, goats, and cattle, stopped the growth of numerous C-diff strains, even some that cause recurrent infections. Closantel, rafoxanide, niclosamide, and oxyclozanide all showed some effectiveness with Closantel and rafoxanide being the best for halting C-diff growth, but also showed some work against “stationary-phase” C-diff cells – the cells responsible for producing the toxins behind inflammation of the colon as well as the spores that persist on surfaces which increase transmission rates.

Also, the low oral bioavailability and high fecal excretion demonstrates an appropriate gut concentration to target C-diff in the colon.

The study authors, after theorizing that the compounds change the electrical properties of the bacterial cell membranes, created new compounds boosting this cell membrane altering effect, which increased the effectiveness. Also, the newly created compounds didn’t affect the beneficial gut bacteria thereby showing C-diff won’t have to evolve to develop resistance.

Researchers are now testing the compounds in animal models and are in the process of trying to license them as a treatment for C-diff in humans.

http://www.wildcondor.com/one-tough-bug.html  For one person’s experience with C-diff while on MSIDS treatment.

Make sure to talk to your health care practitioner about things you can do to lower your risk of C-diff while on MSIDS treatment.

Some suggestions

*Eat a no sugar diet

*Avoid alcohol

*Eat a no to low carbohydrate diet – particularly omitting things such as pasta, bread, rice, potatoes, bananas, and other carbs which have a high glycemic index

*Take copious pre and probiotics to foster a healthy gut micro biome

*Pulse antibiotics rather than using them continuously, or take an antibiotic holiday periodically

*Try and remind yourself that MSIDS treatment is long, so healthy habits are a must to go the distance.  Everything you do early on has long-term ramifications.

Mosquito Repellent

http://www.medicalnewstoday.com/articles/312185.php#natural_mosquito_repellents

Mosquitoes are out in force in Wisconsin, and when you are armed with the knowledge they probably transmit Lyme Disease, https://madisonarealymesupportgroup.com/2016/07/23/german-study-finds-borrelia-in-mosquitos/ are proven to transmit encephalitis, yellow fever, malaria, West Nile virus, dengue, and others, we should all be avoiding them.

A few simple things to do:  http://articles.mercola.com/sites/articles/archive/2014/08/23/mosquito-repellent.aspx

*Drain any standing water around your house

*Wear light colored, loose clothing with long sleeves and pants, hats, and socks

*Plant marigolds around your house as bugs do not like the smell they emit

*Avoid outdoor activity from dusk to dawn, the peak time for mosquito activity. http://www.mnn.com/health/fitness-well-being/stories/7-ways-to-avoid-mosquitoes-this-summer

*Use natural repellents when outdoors

Natural mosquito repellent recipe

Apple cider vinegar helps to kill bacteria on the skin that the mosquitoes are attracted to and the high concentrations of essential oils repels them.

In an 8-ounce spray bottle, combine the following:

4 ounces apple cider vinegar
3 ounces water
100 drops citronella essential oil
50 drops lemon eucalyptus essential oil
50 drops clove oil
Shake first and test on a small area of skin first to test for sensitivity. If no reaction occurs then apply to clothes and skin often when outdoors.

Numerous studies show that lemon eucalyptus oil, citronella, and clove oil work as well if not better than DEET without causing the adverse health effects commercial sprays do.

http://www.mnn.com/health/fitness-well-being/stories/7-ways-to-avoid-mosquitoes-this-summer  Professor of medical entomology at the University of Florida in Vero Beach, Jonathan Day, says 20% of us are “high attractor types,” due to higher carbon dioxide, metabolic rate, lactic acid, acetone, and estradiol. It’s even worse if you wear red, navy blue, or black.  Medical entomologist and technical adviser to the American Mosquito Control Association, Joseph Conlon, states they are also more attracted to folks who drink a 12-ounce beer.

So there you have it.  If you are out at dusk, wearing black and drinking a beer, expect to be eaten alive.

 

 

The Glibowski Case

https://www.linkedin.com/pulse/legal-case-may-benefit-federal-government-those-lyme-luche-thayer?trk=hb_ntf_MEGAPHONE_ARTICLE_POST

The New Mexico US District Court – 2009-1039 Glibowski versus United States Office of Personnel Management (OPM) offers hope for Lyme patients trying to get insurance coverage.

After running to ground the internal appeal process through their insurance as well as an external review by OPM, a federal branch of government to protect access to evidenced-based care for the chronically infected, Robert and Debra Glibowski sought out an attorney to sue OPM.

After a long and grueling battle the tide finally turned when in 2013 a judge ruled in favor of the Glibowskis and required OPM and the insurance company to ‘justify any denials of coverage based on any lack of medical necessity under the policy.’

After a black out, another motion was filed for the judge to take up the case.

It is thought that the judge will rule to take this to the higher court of appeals, the Tenth Circuit Court of Appeals, representing one of 12 regional circuits in the nation which are right below the Supreme Court.

This is big.

Lyme Disease has a chance to be on legal record, and according to the attorney, there is a great chance this higher Court will rule in favor of the Glibowskis, setting a precedent for all OPM external reviews of Lyme Disease, not to mention shake up the insurance world by making it tougher to deny coverage.

A big “thank you” to Jenna Luche-Thayer https://www.linkedin.com/in/jenna-luche-thayer-b75b902b for a superb article delineating all of this.

Contact Your Senators

https://www.lymedisease.org/last-chance-fed-lyme-bill/?utm_source=Sept+14–fed+bill&utm_campaign=Sept+14–Holler&utm_medium=email

Soon, a major piece of health legislation is likely to be voted on by the U.S. Senate. If this happens, a bill we support–the Lyme and Tick-Borne Disease Prevention, Education and Research Act (S. 1503)–will be offered as an amendment.

To help prepare for this, we urgently need to add additional co-sponsors to the bill. Please take a moment to contact your U.S. senators to let them know how important this legislation is to you (even if you’ve already done so in the past).

The legislation would create an advisory committee within the Department of Health and Human Services (HHS) to identify best practices to combat tick-borne diseases. The group would be comprised of patients, advocates, researchers, medical professionals, and government officials. The bill would also require the HHS Secretary to coordinate efforts to strengthen disease surveillance and reporting, develop better diagnostic tools and tests, create a physician-education program, establish epidemiological research objectives for Lyme and other tick-borne illnesses, and prepare regular reports to Congress on the progress of efforts to combat these devastating diseases.

Voter Voice is a system that lets you easily contact your senators. You supply your name and contact information.  

Click on the link at the beginning of the article to go to Voter Voice.

  Published on Sep 8, 2016

Dr. Jay Davidson gives a half hour long interview with Dana Walsh (appeared in the documentary “Under Our Skin,” the best primer on Lyme Disease) and Brent Martin.

They discuss the obstacles individuals with Lyme or other illnesses have to face and how to overcome them. Brent and Dana help build a support community and teach everyone how to better their lives.

Show Details:

1:20 – How Dana and Brent fit into the lyme world
3:00 – Background on Dana
4:40 – How LymeLessLiveMore.com helps
12:54 – Seasonal “sessions” for healing the body
19:25 – Dealing with emotional trauma
25:45 – LymeLessLiveMore.com  Go to this website to sign up for FREE 12-Day Access to the Lyme Less Live More “Core Series.”  There are also other informative videos on this website with Dr. Klinghardt and much more.