https://madisonarealymesupportgroup.wordpress.com/2016/05/09/may-meetings-coppe-labs/
Don’t forget Dr. Baewer of Coppe Labs will be speaking this Saturday (May 28, 2016) at 2:30pm about Powassan Virus, other Arboviruses, and Coppe’s research.
See you there!
Next Madison Lyme Support Group meeting: Regular meeting on May 14 from 2:30-4:30 as well as May 28 same time with Dr. David Baewer from Coppe Labs in Waukesha.
Dr. David Baewer, Chief Medical Officer of Coppe Laboratories, will be speaking on May 28 from 2:30-4:30 at the Madison Lyme Support Group.
Baewer received his MD from the Medical College of Wisconsin where he had previously been awarded a PhD in cellular biology, neurobiology and anatomy. His pathology studies were completed at The Johns Hopkins Hospital and a GI pathology fellowship was completed at the Medical College of Wisconsin. He has lectured on the Role of Serology in Herpesvirus Infection and most recently on Arbovirus Infection as Proposed Etiology of Antibiotic Resistant Chronic Lyme Disease.
Baewer has co-authored a number of publications in peer reviewed journals, as well as a GI text book chapter. His most recent publications have looked at the role of HHV-6 in a post-transplant patient with myocarditis and a case of fulminant hepatic failure in an immunocompetent individual.
For the support group he will explain the role of arboviruses in tick-borne diseases, provide information on the Powassan/Deer Tick virus and how it affects the MSIDS patient, particularly how it may explain lingering symptoms in patients, and will present Coppe’s TBI research.
Hope to see you all there!
There is no one better equipped to spread the word about Lyme Disease than you – a sufferer. There’s something authentic about relating to people your personal story.
Highlights of what’s important to share:
1. Lyme Disease is usually a complicated illness for most people as we are infected with far more than borrelia, the causative agent of LD. All of these pathogens work together to evade the immune system. Symptoms vary from person to person and can be anything. If someone is concerned, they should start by filling out some checklists which can be found here:
https://madisonarealymesupportgroup.com/wp-content/uploads/2016/01/symptomlist.pdf
symptom-check-list-chart-dr-burrascano-10
https://madisonarealymesupportgroup.wordpress.com/2011/09/25/the-bartonella-checklist-copyrighted-2011-james-schaller-md-version-11/
https://madisonarealymesupportgroup.wordpress.com/2011/09/25/the-babesia-checklist-copyrighted-2011-james-schaller-md-mar-version-20/
2. Most general practitioners have been educated that LD is hard to get and easy to treat with 21 days of Doxycycline. This is far from the truth unless you are lucky enough to see the tick on your arm and have the classic bullseye rash, and even then it’s Russian Roulette.
3. Testing in a word, sucks. The two-tiered blood testing the CDC supports (ELISA and Western Blot) is no better than a coin toss, and borrelia don’t like to hang out in the blood but rather in immunopriviledged sites like your brain and the synovial fluid in your joints. Going to a regular practitioner and taking the standard tests, if you test negatively, will give you a false sense of security while you may very well be infected. On the other hand, if you test positively, they will treat you with 21 days of Doxy. If symptoms remain they are more likely to give you an anti-depressant than further treatment – while hideous infections are allowed to fester and worsen. While Doxy is a wonderful first-line drug it does not work against Babesia and some other pathogens.
4. The earlier you jump on this the better. Research shows that those who get treatment right away are far more likely to kick this than those who wait. Since many symptoms mimic the aches and pains of age, many chalk up their symptoms to the aging process rather than a disease which can worsen over time and kill – with the ability to enter every organ in the body.
5. After filling out the checklists above, if you have a preponderance of symptoms, get to a Lyme Literate Doctor (LLMD). They are specially trained by ILADS (The International Lyme and Associated Diseases Society) and understand the complexity of MSIDS (multi systemic infectious Disease Syndrome – or Lyme with friends). They typically use a far more sensitive test – that while still a blood test – shows many more elements. They also will diagnose you clinically – not just on what a test shows.
6. One of the best ways to inform folks is to have them watch the documentary, “Under Our Skin,” which does a superb job of showing the schism in the medical community as well as real people who are suffering due to the politically incorrect position of MSIDS in the medical community. Nothing quite replaces seeing 30-40 people all saying, “I was diagnosed with MS, Lupus, Chronic Fatigue, and the whole time I had Lyme Disease.” It is a sad but effective movie that most accurately expresses what MSIDS patients face. For me it nailed my diagnosis before I had seen one doctor – it’s that good. I bought 4 copies and dole them out to people. It’s the best investment in people you could make – besides your time.
7. Bring people to your local support group. Being in a room full of people fighting the same battle is something to behold. Often, this disease isolates folks, even from their own family and friends – as it’s almost impossible to believe unless you are walking the path and have experienced it personally. The sufferers that bring their spouses and family feel much more supported – but for those that don’t have support – the support group is a great place to feel understood and believed, as well as to learn as we educate each other. Many have been marginalized for so long from supposed “professionals” that they are quite beaten down and low. Come up along side them and listen – supporting them in any way you are able. Those actions will do far more than you could ever know.
8. Feel free to copy these things to keep them in your purse or car. That way you have some information at your fingertips. Also, https://www.lymedisease.org/lyme-basics/resources/books-articles-videos-links/ here are some great resources to check out.
9. Never give up hope.
10. Next Madison Lyme Support Group meeting: May 14 from 2:30-4:30 and May 28 same time with Dr. David Baewer from Coppe Labs in Waukesha. Bio forthcoming.
As you know, May is Lyme Disease awareness month. In that spirit we will be having two support meetings: Saturdays May 14 and 28 (2016) from 2:30-4:30pm at Madison Pinney Library, 204 Cottage Grove Road, Madison, WI 53716
May 14 will be a regular support meeting. Feel free to bring what has helped you the most. Sometimes we learn the most from each other. Also, feel free to bring questions as many have tried various things and can give feedback.
May 28 Dr. David Baewer of Coppe Labs will be speaking to the group. Stay tuned for a bio and the details of his talk.
Stay safe while gardening and enjoying the beauty of Wisconsin. For more information on how to do that:
Please tuck your pants into your socks and wear light colored clothing. Perhaps choose 1 set for this purpose. Then go out and buy some Permetherin spray. You can find this at most outdoorsy types of shops like Gander Mountain. Spray your shoes, socks, and pants down and let try. This spray will hold for 6 weeks provided you wash the cloths by hand and hang dry. Also, wear a light colored shirt (preferably long sleeved) and gloves. Spray the gloves as well, making sure everything is dry before putting on. If you are underneath trees and vegetation, wear a hat that’s also been sprayed.
Should you find a tick, remove carefully without squeezing. Some are now recommending using an ether spray (like the kind you use on warts) on the tick and waiting until it falls off.https://madisonarealymesupportgroup.wordpress.com/2016/03/16/tick-removal/
http://sectionhiker.com/treating-your-clothes-with-permethrin/ Excellent article on using Permethrin with details such as how long it lasts on your clothing under various conditions. You should not spray this on your skin – only your clothing.
***Also, please note that Susan Paskewitz, Professor and Researcher, Medical Entomology Laboratory, UW Madison, says they are finding ticks in open spaces now – meaning, places like soccer and football fields with short grass. This presents a risk for everyone but particularly children playing sports in open fields. Please share this information with your family and friends and educate anyone who will listen.
***Also, be careful when mowing or cutting down areas that contain ticks. Make sure to blow away from your house not toward it. I found ticks on my basement screens and crawling up my walls last summer due to a farmer unknowingly mowing a tick infested area toward our house.
Stay safe and try not to freak out. You are educated and know what to do. Knowledge is certainly power when it comes to ticks.
https://madisonarealymesupportgroup.wordpress.com/2015/03/21/meeting-reminder-and-ticks/
https://madisonarealymesupportgroup.wordpress.com/2016/03/22/dr-isom-to-speak-4916/
Dr. Eileen Isom, owner of Madison Chiropractic-Monona, will be speaking at our next support group meeting Sat. April 9, 2016 from 2:30-4:30. She practices Specific Upper Cervical chiropractic and is also certified in Chiropractic Spinal Trauma (CCSP).
Several of her family members have been diagnosed with Lyme/MSIDS (multi systemic infectious disease syndrome or Lyme with friends), and she has also treated many people with that diagnosis. She will explain how chiropractic care can be an integral part of a whole body approach to chronic illness.
Madison Area Lyme Support Group 