Life for Lyme Hosts Second Public Event in New Jersey, Spreading Awareness and Lobbying the Government 

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By Shimmy Blum 

On Sunday evening, the West Deal Shul in Deal, NJ, hosted a trailblazing event that made a life altering impact for those suffering from Lyme Disease and related diseases, and helped raise awareness that can spare countless others from these debilitating – and enigmatic – diseases. 

The event was arranged by the Life for Lyme organization, a division of the Orthodox Jewish Chamber of Commerce’s Health and Medical Alliance, whose chairman Dr. Robert Mozayeni, is the preeminent expert in the field and serves as president of International Lyme and Associated Diseases Society (ILADS). In addition to a strong representation of men and women from the Deal area community, attendees from Brooklyn, Lakewood and other communities in the region flocked to this event as well. It was life altering for all in the room. 

Although the term “Lyme Disease” is familiar to all, this disease is shrouded in mystery in misinformation, not only amongst the general public, but also amongst many medical professionals and institutions. 

Not everyone afflicted with Lyme or a related disease sees the telltale “bullseye” rash. And there are an incredibly wide array of potential Lyme symptoms that relate to virtually every body function – plus mental illness symptoms – which makes diagnosis incredibly difficult. Furthermore, many of the conventional tests are unreliable, leading to false negatives. And once Lyme disease is missed or misdiagnosed upon onset, it can take years of grueling pain, weakness, treatments and/or serious illness before the body is cleared of the disease – if at all. 

Attendees at this event shared their personal experiences with Lyme Disease, or those of their close friends or relatives. They heard from the leaders and volunteers of Life for Lyme, who have delved deeply into this area of medicine and are uniquely familiar with all its intricacies. They heard from others with similar experience. They received a hefty dose of chizuk and, more so, practical guidance on how they can properly diagnose and treat their conditions. 

Under the leadership of Dr. Mozayeni, Life for Lyme helps guide patients towards the most competent physicians in the field, as well as towards the most advanced testing – all of which most patients would be unaware of if they followed the conventional medical path. Dr. Alain Mass, a prominent Monsey area physician who is uniquely familiar with Lyme Disease, came to Deal to address the audience. Dr. Mass shed much needed light on the disease and its many misconceptions, offering solid medical guidance to all in the room. 

Chamber of Healing 

“Over the years, the Orthodox Jewish Chamber of Commerce has built a formidable network in all industries, including the ‘Health and Medical Alliance’ in the healthcare industry,” explained Duvi Honig, Founder and CEO of the Chamber. His wife, Esther Honig, cofounded Life for Lyme as a division of the Alliance along with activist Menachem Resnick. “We are utilizing this powerful network,” Duvi explained, “to change the landscape regarding awareness and understanding of Lyme Disease at all levels – patients, families, doctors, hospitals, insurance companies and the government.” 

The Deal event follows a similar event that was held in Brooklyn last month in coordination with Sephardic Bikur Holim (SBH). A powerful audiovisual presentation was shown, where several individual who were previously, or are currently, afflicted with Lyme Diseases shared their experiences. In addition to shedding light on the challenging diagnosis, symptoms and treatment regimens, the speakers shared the emotional toll that often comes along with the saga. Particularly, since the disease’s symptoms and diagnoses are so ambiguous, sufferers are often dismissed, even by their close family members, and told that they’re “imagining things” or faking illness. 

Esther Chrem, a Life for Lyme activist, shared her experiences with the disease and spoke of what a difference Life for Lyme is making by providing invaluable guidance and public awareness. She stressed the importance of early diagnosis and treatment when symptoms are first noticed, rather than a “wait and see” approach that some resort to – which significantly complicates treatment options. “Thirty days of antibiotics can be unpleasant but the alternative can be years of suffering,” Esther implored. 

On its online and WhatsApp support groups, as well as in one-on-one consultations, Life for Lyme’s counselors and patients network with each other, offering guidance, hope and understanding. Avrumi Safier, who does case work and guidance through Life for Lyme, relates that the Deal event’s incredible impact was evident immediately. In the days following the event, scores of men and women reached out for guidance and are making enormous strides in their diagnosis and treatment paths. Additionally, he has heard from several Lyme patients that, as a result of the awareness at the event, their relatives and friends no longer dismiss their suffering – and are instead offering them sympathy and assistance. 

Beyond this event, Life for Lyme distributed over 2,500 brochures in over 125 bungalow colonies this summer, opening the eyes of countless Lyme sufferers and their families. 

Lobbying the Government 

Adding to the steep challenges of a Lyme Disease patient is the fact that it is very difficult to obtain proper insurance coverage for necessary diagnosis and treatments. 

Since conventional testing and treatments are often ineffective, insurers tend to deny claims related to advanced testing and treatment options as “unnecessary” and/or “inconclusive.” Similarly, since symptoms and tests are so difficult to nail down, patients often require frequent and/or lengthy physician visits – beyond what insurers traditionally allow. This unfortunately presents many Lyme patients with staggering out of pocket costs for medically necessary treatment even if they have proper insurance. Even worse, many patients delay or forgo proper treatment as result – causing untold suffering. 

Life for Lyme is aggressively lobbying government officials at all levels with awareness about the disease and related insurance challenges, and will not rest until governmental and insurance resources properly cater to the needs of Lyme patients. Shortly after the Deal event, Duvi Honig reached out to New Jersey Governor Phil Murphy to discuss Lyme related issues. Within days, he held a lengthy teleconference with New Jersey Health Commissioner Shereef M. Elnahal, M.D., M.B.A., discussing these issues, and especially the urgent need to mandate insurance coverage. A bill mandating Lyme coverage is currently pending in the State Assembly. 

Commissioner Elnahal expressed the respect that he and Governor Murphy have for the Orthodox Jewish Chamber of Commerce and its work. He vowed to work diligently on properly utilizing the State’s healthcare infrastructure on behalf of Lyme patients, as well as working towards passing the crucial pending legislation. The commissioner invited Life for Lyme to the State House in order to coordinate various Lyme related initiatives with the State. An official delegation led by Dr. Mozayeni and Duvi Honig will head to Trenton in the near future. 

“We are thankful to Governor Murphy and Commissioner Elnahal for being so attentive to the needs of Lyme patients and dedicated to making a difference,” says Duvi Honig. “We look forward to continue working together with a diverse group of leaders in our powerful network to bring hope and healing to patients across the Garden State and the nation.” 

{Matzav.com}

19 COMMENTS

  1. Here we go again ……
    Just to remind everyone, “chronic Lyme” is an alternative medicine diagnosis, ILADS is an alternative medicine group. The reason the test are often negative, as mentioned in the article, the reason conventional medicine doesn’t give this diagnosis, is because “chronic Lyme” is a made up diagnosis. The ILADS doctors send off dubious tests, tests that the CDC and FDA recommend against, in order to confirm a “diagnosis” that only they can treat, with treatments that have already been shown by real studies to be ineffective.
    They are taking advantage of vulnerable people who are suffering from real symptoms, and are willing to run to anyone who will promise them a cure. It is unfortunate that OJC and Matzav have partnered with this group of alternative medicine practioners.

      • I’ve seen people suffering, and they keep suffering, despite the thousands of dollars they have spent on “treatments”. Just because they have been convinced by a quack that theu have Lyme doesn’t mean they have it. It means that they have something else, which is not being treated properly.

  2. @Skeptic, because the CDD and FDA have been corrupt for decades, being bought out by big pharma and their billions of dollars and lobbyists. That’s the whole point. We don’t trust these corrupt government agencies which are completely biased.

    • Actually, the CDC is recommending against the use of antibiotics in “chronic Lyme”, so their position hurts big pharma.
      But your comment really shows what this is all about-those who follow the evidence vs. those who think everything is a big Pharma conspiracy (think anti-vacccers, alternative medicine quacks, etc.)
      I would suggest to all those who don’t really follow this that they talk to their doctor, most of the local doctors are well aware of “chronic Lyme” and are familiar with the real guidelines and k ow what is right and what isn’t. The ILADS people keep talking about how doctors are unaware and uneducated, in reality they are quite educated, and see through this quackery

  3. To ‘sceptic’. You’re a disgrace. I’ll bet that if you or your loved one would be affected you wouldn’t be singing the same tune .

  4. @skeptic let’s address your points one by one with facts since you are highly misinformed even with what the cdc says. One you say “chronic Lyme” is an alternative medicine diagnosis. Do you know that everyone agrees that if someone is cdc positive for lyme and has all the tell tale symptoms including bullseye rash and does not get the proper treatment in time that it will turn into chronic Lyme with neurological symptoms? Every expert infectious disease dr agrees to this. Yet there are still local doctors and patients that are still uninformed about this because they are not up to date on what Lyme disease is. This is one thing the organization is trying to make sure all local doctors know. Everything that the cdc and infectious disease doctors say about Lyme disease so that people can get the correct treatment right away.

  5. The reason these comments seem valid and invalid to me is that really you can call it what you want. Lyme disease is obscure because most people who are referring to lyme are really referring to MSIDS – Multiple Systemic Infectious Disease Syndrome. The immune system does not properly mount a response to the infection (create antibodies that are ‘testable) that is why there seems to be negative test results when patients are really sick and do get better with proper treatment that isn’t only long term antibiotic therapy but also immune therapy, antihistamines, diet to starve yeast which allows bacteria to thrive, oxygen and glutathione therapy which strengthens cell health and detox pathways, and other body strengthening programs to improve overall health so the immune system can kick WHICHEVER bacteria is causing the systems that are blanketed a lyme symptoms. It’s simple science. Unfortunately “lyme” has gotten a bad rap, but its not abt lyme its about a body attacked or riddled with infections. There is no reason to be in a ‘camp’ pro or against. If someone is sick and this helps them its what they need to do. Noone is spending that much time and money on their health for attention or what they believe is falsehood.

  6. @skeptic let’s address your second point that ilads is an alternative medicine group. Well like you say it’s a “group” like all doctor groups like AMA American medical Association. Did you know that there were doctors that are part of AMA that are murderers? You know because the AMA is a group of 250,000 drs that doesn’t vouch for each member or do background checks. The only thing you need to be is a dr and pay your dues. The same thing with Ilads they are a group of drs and they don’t vouch or do background checks on all the drs that want to join. So rather than judge them as a group because then we can find horrible people in every group I ask did you ever check the studies done by individual doctors or watch their videos like dr mozeyni or dr Phillips both well respected Yale trained doctors who only joined ilads out of necessity since they found no support for their work. See pubmed for published studies by them.

  7. @skeptic let’s address your third point the reason the tests are negative. On this you are totally misinformed because the cdc admits itself that the tests can be inaccurate in the beginning stages of the disease and they themselves recommend retesting later on. Don’t take my word for it check out cdc.gov/lyme see their testing page and their FAQ page where they address the problem with testing. Unfortunately many local drs do not know this information and trust the tests as 100% accurate which even the cdc says not to. The CDC recommends that if a patient has a 100% recognizable lyme bullseye rash but the test is negative for lyme you ignore the test and give medicine right away. Most local drs do not know this.

  8. @skeptic let’s address your next point that because the tests are negative therefore if the person is symptomatic it can’t be chronic Lyme because that is made up. There are cases in our community where lyme was suspected but it came up negative on testing. The dr not recognizing the other symptoms of lyme and being misinformed about the testing refused to treat for lyme. The dr sent the patient out to many specialists and many other tests to see what is causing the symptoms and when everything else was ruled out the dr retested for lyme which this time came out positive and now the Dr was ready to treat. However it was too late for this patient because by the time they went to all these specialists and did other testing it already became the real chronic Lyme with neurological symptoms because it was left untreated.

  9. @Skeptic let’s address your point that chronic Lyme is a made up diagnosis. Let’s get all the facts straight since we already proved that that term includes a real disease that everyone agrees with so let’s explain the terms of disagreement. 1) every expert dr agrees that Lyme disease if left untreated can become chronic Lyme with very severe symptoms including death (see lyme carditis) 2) the points of disagreement are if the tests are negative but don’t have 100% the bullseye rash if you can make a clinical diagnosis based on the other symptoms of Lyme disease. Some infectious disease drs day no and you should rule out a thousand other things first even if it might become chronic Lyme afterwards while ilads drs say no these are symptoms of Lyme disease so let’s make a clinical diagnosis and start treatment just in case and rule everything else out afterwards so it doesn’t become chronic Lyme 3) another point of disagreement is that infectious disease drs do not believe that other infections that mimic lyme are as widespread and therefore most drs do not even bother to check them on the cdc and fda approved labs this is just plain medical malpractice that due their own understanding they refuse to do testing which can prove them wrong.4) another point of disagreement is the proper dosing of medication for Lyme disease according to the CDC and infectious disease society this dosing has changed multiple times over the years based on statistics that leave out a vulnerable 10% because that number is low enough to be ignored medically and therefore they are counted as rare and drs forget these exceptions exist and therefore assume they are like the other 90% and don’t treat them properly. Ilads wants push the statistical number to as close to 100% as possible and treat these exceptions with the proper dosing. There are published study disagreements between American drs and European drs on the proper treatment of Lyme disease. I think you would agree @skeptic that European drs are not quacks because they disagree with their American counterparts. 5) another point of disagreement is after getting the suggested treatment if the symptoms persist why? The infectious disease society says it is Post Lyme disease symptom and it is in the patients head and it will all go away on its own in 6 months. Patients that have followed this recommendation have now been been suffering for years. Even dr Gary wormser in a NY Times article 13 years ago (google it can be found online) said that treatment for Post Lyme disease syndrome requires more research and now after 13 years of twittling his thumbs and pushing sufferering patients away he is finally doing the research with NIH, Tufts, and NY medical college. While he was doing nothing the researchers at Columbia, Johns Hopkins and Ilads were figuring out how to help Post Lyme disease syndrome patients which some call “chronic Lyme”. They have found based on legitimate published studies that some bacteria does survive the original dosing and that some symptoms are caused by the host’s body immune response. Based on this new research Even non ilads expert drs like dr Brian Fallon of Columbia, dr Alan Pollack of NYU, dr Brian scully of Columbia and dr John aucott of Johns Hopkins are treating Post lyme syndrome/chronic Lyme patients with either longer term of antibiotics for the resistant bacteria or with immune response drugs. Patients suffering for years finally see relief.

  10. @skeptic let’s address the next point dubious testing that the CDC and FDA don’t approve of. Did you know you that there is regular tests from labcorp, quest, bioreference, shiel etc that have nothing to do with Lyme disease that regular drs use that are not fda approved? Why don’t you ask the regular drs why do they use these tests? The answer is the tests are not required to be fda approved and the drs using them know they work and know the fda is a bureaucracy that can take 10 years to approve anything. The same thing with these tests the drs using them have studied them and know they work and even admit their faults. The life for Lyme organization chairman Dr Mozeyani who uses these tests will not solely rely on them to treat ( when he can and make a lot of money scamming people) but rather he tries to confirm the diagnosis with as much data as possible including skin biopsies and blood smears looking for the infections himself under an extremely powerful microscope. If he does not get a confirmation he does not treat. This is the standard he wants for all Ilads drs but unfortunately he is one man and can not be in control what a dr does in his own office. Which is why life for lyme is lobbying the government for proper oversight and not witch hunt oversight.
    With the CDC admitting that testing is inaccurate there is no time to wait for proper testing to come out and the FDA needs to rush their checking of it because waiting another 10 years for a a diagnostic tool is just way too long.

  11. @skeptic let’s address your last point that the drs are taking advantage of patients with real suffering. Yes on this we agree as with any capitalist system there will be greedy drs that take advantage. This is the whole goal of the organization life for lyme to separate the bad drs from the good drs and send these suffering patients to the right drs that will treat them properly. Just because the other drs deny their suffering does not make them right either like you say. Rather there are bad doctors on both sides. Did you know there are drs that treat chronic Lyme that do take insurance and heal their patients in a short time? Only really complicated cases unfortunately have to go to our recommended lyme experts who charge because they spend 1-4 hours hearing from the patients every symptom they have which in some people can be over 75 symptoms ( call life for lyme 3479276198 they can give you the full list with actual testimonials) every test they have done by specialists to figure out a diagnosis and then finally talk treatment. The insurance companies pay for 15-30 min max not the hours required to hear the patient out. Why don’t you ask the insurance companies why they will pay for 15-30 min at 20 specialists each but won’t pay for the same amount of time for one doctor to hear what each of these specialists said?

  12. @skeptic regarding your point that you have seen people suffering and they were not helped by Even seeing a lyme dr. This organization agrees with you that not everything is lyme which is why they tell patients to rule everything out. The problem is the regular drs and the infectious disease drs do not include lyme and the other tick borne infections in their ruling out and they ignore them. The chairman Dr Mozeyani got a patient that was unsure if it was Parkinson’s (due to inconclusiveness from their drs or bartonella (one of the other tick borne infections) he did a whole bunch of testing and discussion with the patient and decided in the end it was Parkinson’s and sent them back to their regular drs to be treated for it. This is the goal of the organization to help people find their way properly. They don’t agree with all cdc, infectious disease, local drs or even all ilads drs they just know there are problems all around and are trying to guide people in the best possible way.

  13. @skeptic you are right that being against long term antibiotics seems to go against the “big pharma” but there are reasons that the drs could be against it the main one being the egos of the infectious disease drs like dr wormser who can’t admit that they were wrong. Famous author (of thinking fast and slow) and psychologist Daniel Kahneman coined a phrase “theory induced blindness” that a person can believe a theory (which is not a proven scientific fact) so much that they become blind to hearing arguments against it. Rav Yisroel Belsky who has guided some members of the life for lyme organization and researched ilads drs and believed in chronic Lyme based on the research he did said the same thing about the “theory of evolution” it has never been proven as scientific fact and remains a theory to this day but some scientists treat it as scientific fact refusing to hear any arguments against it (Rav Belsky’s words on this topic can be heard on the shiur called da ma litashiv liapikores). The gemarah says the “best of the doctors go to gehinnom” one of the commentors there says the reason is due to the egos of the doctors they refuse to admit when they are wrong and cause undue suffering to their patients. Life for lyme is here to help guide patients to The right drs.

  14. @skeptic you say all the local drs are all educated in Lyme disease. Life for Lyme has found this to be untrue that most drs do not even know the basics of what the cdc says. They don’t know what a bullseye rash is. They don’t know what ticks carry lyme. They don’t know the proper treatment or diagnosing according to the cdc. They are not up to date on the latest resarch which the cdc is constantly changing. Life for Lyme wants every dr to in our community to be educated on Even the basics of Lyme disease since some patients will be confused by their uninformed drs. Life for lyme has gotten calls that drs were googling what the cdc says at the appointment or checking their red book this should not be the norm. Drs in our community should be masters in the basics since this has become a prevalent problem and any dr that refuses to learn the basics of what the cdc says is just a bad dr.

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