http://www.nbcnewyork.com/on-air/as-seen-on/LYME-WARS-1508783640861_New-York-452543463.html Published Oct. 23, 2017 (Click on link for video)
The Lyme Wars
This powerful segment gives three Lyme/MSIDS patient stories.
Julia, is still wheelchair bound after presenting with the tell-tale bullseye rash. Her arms and legs went numb at school. She’s seen 60-70 specialists but tested negative for Lyme. Her greatest advocate is her dad who became an internet researcher to figure it out.
Kyra, didn’t have the normally thought of symptoms – just horrible anxiety, depression, and hopelessness. Her doctor knows Lyme is the great imitator and suspected it despite a negative test. She tested positive for Ehrlichia, which implies contact with a tick. Due to the Lyme/MSIDS diagnosis Kyra went from blaming herself to understanding she now had something she could fight. After doxycycline they chose IV Rocephin – and Kyra became herself again. “The feeling of actually starting to recognize pieces of what I was before was such an amazing feeling.”
David, felt pretty good after 30 days of antibiotics but after researching on the internet and understanding the probability of coinfection involvement and some persisting symptoms, he wanted a Lyme literate doctor (LLMD) to appraise his case. He handles his symptoms by avoiding carbs, alcohol, and doing homeopathy. David says there might be 7 deer on his lawn on any given day, so he bought the Japanese Barberry plant to thwart them; however, research has shown the plants harbor ticks and mice. David states you have to be your own advocate, that every case presents differently, and that you have to do your own research but not drive yourself crazy, remembering that someday the sun is going to rise and you are going to feel better.
For more facts and info: NBCNEWYORK.CO/LYME
Excellent, excellent story with wonderful information. If you do a tally, two of the three tested negative (David didn’t say) – which is very common. Patients so desperately want that positive test but they must understand testing for tick borne illness (any of the pathogens) misses half of all cases. There is a small window in which the test even works and even then some people never mount an appropriate immune response.
More on testing: https://www.lymedisease.org/lyme-basics/lyme-disease/diagnosis/
Finally, after 40 years of suffering, even the CDC is stating to treat if TBI’s are suspected: https://madisonarealymesupportgroup.com/2017/07/12/start-treatment-if-tbis-are-suspected/
Please know an EM rash IS LYME DISEASE. No testing required! According to ILADS you need medication for 3-4 weeks and NOW! https://madisonarealymesupportgroup.com/2017/03/24/one-pill-of-doxy-only-reduces-prevalence-of-rash-not-lyme-disease/
Dr. Elena Frid has excellent advice on things for parents to look for: https://madisonarealymesupportgroup.com/2017/09/19/three-things-for-parents-to-watch-for-regarding-tbis/
When Lyme isn’t caught early: https://madisonarealymesupportgroup.com/2017/09/05/when-lyme-isnt-caught-early/
Kyra‘s sudden mental changes are key symptoms that need to be acknowledged. If your child suddenly has drastic mood changes, please consider TBI’s as well as PANDAS/PANS: https://madisonarealymesupportgroup.com/2017/10/09/today-is-panspandas-awareness-day/
Recently, the CDC came out with a damning report based on 5 patients who had adverse outcomes after IV treatment. Please understand that thousands of Lyme/MSIDS patients’ lives have been saved using IV treatment – Kyra’s included. For more: https://madisonarealymesupportgroup.com/2017/09/08/another-lyme-patient-benefits-from-iv-treatment/ What’s important to remember is many of these pathogens can infect the brain, requiring drugs that cross the blood, brain, barrier. You can throw doxy like napalm until you are blue in the face but it will not eradicate organisms in some. There is a concern of doxy throwing the spirochete into a non cell wall form to lurk until later – perhaps causing or exacerbating Alzheimer’s and dementia: https://madisonarealymesupportgroup.com/2017/06/10/the-coming-pandemic-of-lyme-dementia/
More on psychiatric Lyme: https://madisonarealymesupportgroup.com/2015/10/18/psychiatric-lymemsids/
David rightly warns of coinfections as research has shown Lyme rarely comes alone: https://madisonarealymesupportgroup.com/2017/07/01/one-tick-bite-could-put-you-at-risk-for-at-least-6-different-diseases/
Japanese Barberry: https://madisonarealymesupportgroup.com/2015/09/30/barberry-friend-or-foe/