- Видео 80
- Просмотров 184 118
Project Lyme
США
Добавлен 18 апр 2016
Creating Change: Lyme Disease Advocacy For Patients
About The Event
The goal of this webinar is to teach patients how to effectively advocate for change on the Federal, State, and local levels of government.
Our presenters will discuss multiple topics including but not limited to:
ways to engage with political representatives through letter writing, proclamation requests, and more
how to participate in the upcoming Center for Lyme Action Fly-In
how to advocate for change hyper-locally, such as planning 5k’s, social media fundraisers
About the Presenters
Ali Moresco is the founder of Moresco Public Relations + Communications. Once focusing on entertainment PR and talent relations, Moresco made a pivot to healthcare PR four years ago when her world...
The goal of this webinar is to teach patients how to effectively advocate for change on the Federal, State, and local levels of government.
Our presenters will discuss multiple topics including but not limited to:
ways to engage with political representatives through letter writing, proclamation requests, and more
how to participate in the upcoming Center for Lyme Action Fly-In
how to advocate for change hyper-locally, such as planning 5k’s, social media fundraisers
About the Presenters
Ali Moresco is the founder of Moresco Public Relations + Communications. Once focusing on entertainment PR and talent relations, Moresco made a pivot to healthcare PR four years ago when her world...
Просмотров: 142
Видео
Discussing FDA clearance of Lyme ImmunoBlot
Просмотров 8452 месяца назад
About The Event The iDart Lyme IgG ImmunoBlot Kit is a stand-alone test for the detection of IgG antibodies against Borrelia-causing Lyme disease. The iDart ImmunoBlot Kit features 31 Lyme antigen bands, which are more antigen bands than any other Lyme immunoblot test on the market. Moreover, it is the only immunoblot that includes Osp A (P31) and Osp B (P34). The inclusion of 31 antigens impro...
Recovery From Complex Chronic Illness
Просмотров 2453 месяца назад
About The Event Researchers at Mt. Sinai Hospital are looking into ways to help patients address complex chronic illness including LongCovid, ME/CFS (Myalgic encephalomyelitis/chronic fatigue syndrome) and Post-treatment Lyme disease syndrome (chronic Lyme). The studies will involve the use of medical devices, surveys, video conferences, and dietary supplements to identify results. Dr. David Pu...
Lyme Persistence and Use of Combination Therapies
Просмотров 7176 месяцев назад
About The Event Researchers at Tulane University have found that a combination of antibiotics is more effective in treating Lyme disease than the commonly prescribed course of one single antibiotic. This finding, published in Frontiers in Microbiology, could pave the way for improved Lyme disease treatments, particularly in persistent cases that have not responded to standard antibiotic treatme...
One Health for Tick-Borne Diseases: Linking Human and Veterinary Medicine
Просмотров 3077 месяцев назад
About The Event One Health is an integrated, unifying approach that aims to sustainably balance and optimize the health of people, animals and ecosystems. It recognizes the health of humans, domestic and wild animals, plants, and the wider environment (including ecosystems) are closely linked and inter-dependent. The approach mobilizes multiple sectors, disciplines and communities at varying le...
Dormant Microbes Causing Chronic Illness
Просмотров 1,3 тыс.8 месяцев назад
About The Event The number of patients experiencing chronic illness has grown over the past decade. But many people may not know what or why they are experiencing chronic symptoms. With Lyme and other tick-borne diseases, symptoms may not develop until many months or years after infection, as the spirochete can evade immune responses and remain dormant in the human host for long periods. In lon...
Relationship Between Gut Microbiome and Lyme Disease
Просмотров 3,2 тыс.9 месяцев назад
About The Event Lyme disease and associated tick borne infections can directly affect your gastrointestinal tract. Roughly 80% of the immune system is located around your digestive tract, so if you experience symptoms there will be a larger than usual immune response. Recent research revealed that the gut microbiome of Lyme patients has a distinct signature as compared to healthy control subjec...
Diagnosis and Treatment of Lyme Carditis
Просмотров 86710 месяцев назад
About The Event Lyme carditis is an infection that occurs when Lyme bacteria enter your heart tissue. The bacteria affect your heart’s electrical system or can cause inflammation (myocarditis or pericarditis). According to a study, 90% of patients with Lyme carditis develop cardiac conduction abnormalities and 60% develop signs of perimyocarditis. 5-10% of cases may also present with fulminant ...
An International Clinical Perspective of Lyme Disease (Part 1)
Просмотров 1,6 тыс.11 месяцев назад
An International Clinical Perspective of Lyme Disease (Part 1)
An International Clinical Perspective of Lyme Disease (Part 2)
Просмотров 68511 месяцев назад
An International Clinical Perspective of Lyme Disease (Part 2)
Pathogenesis and Treatment of Chronic Inflammatory Conditions
Просмотров 2,8 тыс.Год назад
About the Event There are striking similarities between chronic Lyme disease, long COVID, ME/CFS, and other chronic inflammatory conditions. Dr. Bruce Patterson and his team have developed a novel protocol to treat these chronic sufferers and his approach has been found to have excellent results in nearly 500 patients who were treated with the same therapy. This event will cover a variety of to...
Brain Mapping Tick Borne Disease w/ Dr. Robert Hedaya
Просмотров 706Год назад
Brain Mapping Tick Borne Disease w/ Dr. Robert Hedaya
Neuropsychiatric Manifestations of Lyme Disease
Просмотров 10 тыс.Год назад
Neuropsychiatric Manifestations of Lyme Disease
With Christ Jesus Name 1st 2:23 and Isaiah 54- 56 You were Healed Rylan SHELOM SHELOM ALWAYS we have Authority to speak to the attack attacker to take his hands over Rylyn in the Name of Christ Jesus Only Believe with Lots ve
Thank you for sharing this information.
Wow!!! so incredibly comprehensive.
Hands down the world leader in babesia .
50mg Alpha Lipoic Acid a day after the antabuse stopped the neuropathy for me
Excellent
14:00- clinical clues 50:00- hyperbolic therapie
I would love to know: is ozone a good therapy for someone with Babesia? Some say yes, others say it can make Babesia worse.
Here we are two years later and no cure with double dapsone.
In a study called "A Distinct Microbiome Signature in Posttreatment Lyme Disease Patients" they have found - increase in Blautia, a decrease in Bacteroides. So, what a pity these findings don't correlate with Actinobacterie (Bifido) as is discussed here.
❤❤❤❤❤
I wonder if you think in terms of frequencies like Tesla talked about when you work with all these studies and research, where maybe you can find a new key to open new doors
Your in my prayers
Great info, but how the heck do you get treatment when your doctor dismisses your symptoms?
VERY informative!! I wish I had caught this live! Great points about dealing with family members who don’t understand what this is, the diet we are on, and don’t care to find out. My family never asks how I, or my grown son are. They think I’m obsessed with my health, and they have young children under their care. May I ask where Ali found a doctor who could figure out what she has? My grown son is having a huge meltdown after trauma and has had health and mental health problems for 30 years since he had meningitis at age 7 and almost died, but was left with brain damage, CNS problems, body pain and excruciating headaches. No one can or will help him and do correct testing and help him cope day to day with severe Lyme rage and psychosis. I’m afraid for him! I would be happy to get involved in raising awareness, share my story and my 38 year-old son’s story, but I wasn’t sure where to start, so thank you! I’m a retired teacher, and would love to go to schools and give presentations to raise Lyme awareness to kids and tell them about prevention. 🩷
Hello Dr B. I am nearly patient zero for you. Me, my husband, and all of us in Montauk came to your East Hampton NY office in 1982+/- I am still struggling with long Lyme's disease. The current situation is becoming dire. Western medicine doesn't understand what I need to do. I need to figure out which tick born disease I'm dealing with. Bartonella? Babesis? Was it from my time in Western MA / CT? Originating in 1974 in Enfield CT? A lot of us got RA that year. Almost all of my classmates there now have MS, ALZ, Fibro, CFS, EDS, Parkinson's or have passed away too young. I would love to have a conversation with you again regarding this.
I notice Dr Burrascano is listed as a consultant for Igenex on their website and that he has appeared in multiple videos promoting their products - but in the presentation he states he does not work for Igenex. This is a source of confusion and a potential conflict of interest. given Project Lyme's mission statement is to educate, rather than promote commercial products - I hope you will agree your viewers should expect full transparency so we can properly asses the material presented. With this in mind, can you clarify the presenter’s relationship with the test manufacturer. Also - Dr Burascano describes the test as 100% sensitive and 100% specific - this would indeed be a huge step forward in testing - and a potential game changer for addressing the way Lyme disease is managed. However, there were no references given for how this figure was obtained, as far as I was able to see. Now its well-recognised that strong claims require strong evidence - so can we see the validation study that supports this figure please? As I am sure you have noticed - the tone of many of the responses in these comments is wary or even negative. I think we can all appreciate that the chronic Lyme patient community had been gaslight, lied to and generally let down by doctors, institutions and, as highlighted in this presentation, by testing in general. Surely this means, that, as a patient advocacy group with a mission to educate and support patients, Project Lyme has to go the extra mile to provide full transparency, and data to support the claims made by the representatives of commercial entities it gives a platform to. Otherwise, how are viewers to differentiate its materials from commercial product advertising?
Hello. Thank you for reaching out and raising these important questions. We have reached out to Dr. Burrascano for clarification and will update that information as soon as we have it. Have a great day!
@@projectlyme8087 Great to hear - thank you very much - look forward to hearing back.
Hi. Just wanted to follow up with a link to the Lyme ImmunoBlot sensitivity and specificity information. This should provide some of the answers you are seeking: igenex.com/wp-content/uploads/Publication_Immunoblots_with_Recombinant_Borrelia_burgdorferi_Antigens_for_Laboratory_Diagnosis_of_Lyme_Disease.pdf
@@projectlyme8087 This is rather disappointing. The paper quoted indicates that the sensitivity was actually somewhere in the range 84% to 100% - and that was not actually possible to define it further due to the small sample size used (see Table 5). Now, an 84% sensitivity means that 1 in 6 patients would receive a false negative result from this test (be told they are negative - when in fact they are infected) - While the claimed 100% means effectively no-one would receive a false diagnosis. This illustrates just how misleading it is to claim a solid 100% sensitivity when the data says it is just as likely to be 84%. If actual justification exists for claiming 100%, I for one, and I am sure many others, would be keen to hear it - but based on the above - and without such data - such claims would represent obvious false advertising. This brings us to the point of incentives and the distance between the presenter and the product. It has now been 2 weeks since the request for clarification of the presenters’ commercial arrangements with the test manufacturer. Surely the presenter either has or doesn’t have a commercial arrangement with Igenex. Why would it take over two weeks to answer such a simple question - or should viewers interpret the silence on the matter to, in itself, speak volumes? Clearly, it’s in patients’ interests, and therefore in Project lyme’s interest, to clarify this point. After all, if patients cannot trust patient advocate groups - who can they trust? Has Dr Burrascano responded to your follow up in any way - if so, perhaps you can share what was the response? Will project lyme actually bottom this out?
For Lyme are speciall Herbs Buhner protocol ❤
My doctor told me to drink hot chocolate twice a day made with 75% dark organic cocoa & coconut milk. Six months later my immunity had almost doubled. I hope this little guy is healed. My heart melts every time I listen to him sing Don't Worry.
@@lifeinpodunkville543We all love him😊Greetings
He has got such a beautiful Spirit. His smiling eyes and smile lights up my life, for sure. Thank you, for sharing him with us.😊❤
Amo demais Pequeno guerreiro
My brain is still sick. I am in Northern California. I was told for six years that lime disease did not exist here and I knew that’s when I got sick and I had the bull’s-eye rash. I had one course of antibiotics for 30 days. my brain is sick. I feel like I’m gonna die. How do I get help? I’m not opposed to seeing the psychologist or psychiatrist. Whatever she is. I am on psych meds. But they’re not helping anymore and I want to kill myself and I don’t know why.
I hope I can get my doctor to watch this. I am so sick still. And I can’t get any help. My brain is on fire.
If someone is on the pharmaceuticals...antibiotics and antipatasitic regimine, can they also use herbs to stop or slow the herxing?
So what's the best test and most accurate test to diagnose Lyme's disease?
What's the gold standard test to diagnose Lyme's disease?
Lol
my western blot was completely negative absent all way down. 70% false negative rate. I actually have 3 strains Lyme several babesia and bart and Q fever and another one. HOW ABOUT BETTER AFFORDABLE TESTING THAT ALL INSURANCE WILL COVER PLUS BETTER TREATMENTS ITS ALL OUT THERE BUT NOT AFFORDABLE!!!! THIS NEEDS TO CHARGE.
Great explanation
I love all the tech being worked on to diagnose but where are the treatment efforts?
Amazing! Thank you all
Pushing testing is not ILADS approved, these tests are clinical diagnosis..
I am denying and comply withe the listing and also SSDI say I have limitation but can work, very contradictory statement
What happened to Burrascano’s Lyme culture test? The problem is the FDA itself. And Igenex price gouges patients.
Exactly
We can hear you
i have the microti babesia
Are you bleeping these thing out on purpose?
What is she talking about deserving. He didn't deserve this. What world is she living in. THATS NOT HOW DISEASE WORKS. There's no deserving or undeserving it's a fucking disease.
I pray for God's healing upon Rylyn may the Lord heal and restore you totally. Amen 🙏
Looking for Input - Suggestions - Resources … Now the question is… when I am treating chronic bartonella - not henselae or the other strains tested for by Igenex - AND chronic babesia - not the ones Igenex tests for so perhaps odocollei… AND this shit almost killed me several times over the last decade.. AND I am very financially challenged.. WHAT is absolutely necessary re supplements. And HOW/WHEN am I supposed to take them throughout the day? AND if things get staggered, how to stagger (like days on/off etc)? I just started Tafenoquine as recommended by Dr H. Lindner due to very recent published research - not covered by ins - I paid $255 for 16 tabs.. Also taking Azithromycin 2x/wk, Atovoquone liquid, and Artimisinin Can’t currently get MB from a compounding pharmacy so I get pharma grade liquid 1% - this is necessary to combat methemoglominemia caused by Tafenoquine (also I used it previously when on Horowitz Double double dapsone protocol) How much should I take? Can I put in my vitamix blender with MCT oil to make it more absorbable? Does another thing (emulsifier) need to be added? I’m at my end. Can’t work full time, daughter has had chronic illness, now she needs a major surgery in Dec so I’ll be off work about 3 weeks.. Im trying to just pray & trust that somehow it’ll all just work out but I do need to come up with a plan for the meds - on/off days & when/how, etc. I can’t afford to travel states away to see a high priced llmd. My current dr knows a fair amount and has been very willing to learn more and work with me so we are working together to come up with a better plan for tmt that maybe will get better results I told him no more whack a mole - I want to treat Bart & babs at same time otherwise it’s too much switching due to severe symptoms.. And I told him I don’t ever want to stop tmt.. get to a good place then go on a maintenance plan until I die or until I need to ramp up again. I’ve been treating since 2016 but have had much longer.. every time I stop tmt the most I’ve had of feeling good is a few months. It sucks and I’m so sick of it. Any input / suggestions / resources are appreciated! I’m watching & taking notes from Horowitz, Birrescano, Lindner, Klinghardt, Igenex, and Jemsek I am trying to get answers to my questions and will go over things with my Dr. I do have a plan work-in-progress but do appreciate wisdom shared from others in the community. Thanks
I would like to be your friend Rylan I think you’re great we could play music together❤I play the guitar and sing to
Nem sokat tudtunk meg. Ők is keresik a módját, ezért nem jutunk előre ezzel a videóval. Sokan vannak online. Miért van olyan sok beteg? Vannak, akik ártani akarnak az embereknek. Isten itt nem segít!
So I’m disable from the marine corps and try applying for ssdi and got denied and now the lawyer is in play and told me might not get it cause I’m 48 and medical records clearly states spinal cord is fuse to the back bone so the dr packed it with back muscle to protect it. So now I’m just waiting. Guess my question is does the age play a factor
Get well soon! ❤
How come I can't get help in Texas if this is so common.can you help?
I am 68 years old. I was denied 2017. I realize 67 cut off for disability, but my hope is my hope is I can obtain Disability Social Security level pay. I believe in my opinion I cannot get SSDI but still could get SSDI level social security pay. Am I right? I live in Indonesia, so if accepted, can I get you to represent me in Absentia or by video? I have presntly 80% disability VA and presently working with a VA lawyer for 100 becase doctor says I cannot stand too long or Inwil fall, TDIU. What can you do for me?
It seems the lawyers are making a lot of money. LOL
QQQ - what do you think about QNRT and also what do you think about the David Device? I had the opportunity to receive neurofeedback with a type of QEEG and I feel it was really helping. My daughter started treatments but then shortly after she started the provider quit working due to covid. Sadly he had bought into the scary hype around it all. Our treatments were weekly. I really do think it helped. I forget that we have the David device so maybe I need to restart that…
"lyme has even reached some areas of Eu" Eu is completely black on the map! XD haha its worse over here than it is in USA and Canada I have chronic Lyme+ babesia and overgrowth of Akkramansia when i did gi map 2 years ago
From my own oregano, cinnamon, cur cumin, ginger, garlic,red onion, black and red pepper and cayenne pepper, mint, parsely,curry leaves oliv e leaves bay leaves green and black tea saffron white tea red bush tea from South Africa.,,