Renowned Oncologist Neil Spector, MD shares his own personal story of his transition from doctor to patient, and how Lyme disease led to an emergency heart transplant.
Powerful words taken from Lyme Australia's Web page and a statement that no one can disregard. “In the fullness of time the mainstream handling of chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government, and virtually the entire insurance industry have colluded to deny a disease. This has resulted in needless suffering of many individuals who deteriorate and sometimes die for lack of timely application of treatment or denial of treatment beyond some arbitrary duration,” ~Dr Kenneth Liegner, Physician since 1988
Here in North Carolina with Lyme Disease caught here in eastern NorthCarolina with 4 bulls eye rashes and over 60 tick bites in the last year.Medical care not on par with the CDC guidelines.Oil of Wild Oregano&turpentine are my therapies.See the EarthClinic,EarthCures website.Screw the medical profession and their dithering while people suffer.
Sadly Dr Spector has just passed away, he was a rare and wonderful advocate for his patients in both the Oncology and Lyme disease world. We were blessed to have had him in our corner!
Thank you Dr Spector for going through lyme desease and working so hard to help others. What a loss since you left. You will always remembered for helping so many people who are stll to this day suffering and struggling. Love, sincerely
IDSA has much to answer for! As a lyme patient and a doctor of medicine, I feel that we, the patients have been failed! So Sad, I understand that this brave man has now passed away. He was a great advocate for us a Lyme patients....we need more like him.
I am incredibly impressed with the interviewer.Her questions were great. It is amazing that an oncologist could be treated as if he was just stressed. I too have been through an illness that drs. understand little and so used to being told its stress. You get to a place where you just never are taken seriously. and so tired of being 'unheard'.
Thank you for being our advocate ! We are far to ill to be our own advocates, so your involvement is invaluable to us !! I have a feeling that this illness is eventually going to blow out of the water, like HIV in the 80's. This interview is so transparent that I am forwarding it to my doctor. Good work !!
Amazing!! I contracted Lyme last summer. It pretty much went straight to my heart. Friends and Dr.'s either told me it was anxiety or something psychosomatic. What's funny is I'm studying to become a clinical researcher to study disease. I researched and researched my symptoms, suggested it could be Lyme to 2 ER Dr.s, and yet they wouldnt test me...Spreading awareness is going to be important!!!
I am HORRIFIED at the response of professionals towards professionals who obviously would know so much more than us lay people. I hope you got the right diagnosis long before it got to the stage of this dear man.
Thank you for speaking up! I’ve had Lyme Disease for over 30 years, for which 27 years it went undiagnosed. Living like this can be hell, but it sure does make a difference when love and compassion is shown.
@@anythinggoes5574 I’ve had many ticks on me throughout my life in riding horses in the mountains. Even some I’ve had to remove that dug in. But this time I didn’t see or remove any.
I understand. I wish there was a way to communicate it. An effective way. Plus early education about it. However, don’t let this illness kill your heart. Don’t let it destroy your compassion. Let that fucked up feeing of being misunderstood to push you. I know first hand, being pissed at others never helps. This fucked up, but don’t loose your will and compassion. ❤️🌺.
@Tapanga Soul Yep it’s wonderful when family members tell you that everybody gets Lyme Disease and it’s no big deal. Like it’s comparable to a common cold. What’s interesting is all the laws and regulations that dictate how a person is diagnosed. Far as I’m concerned this is a well known disease that they have tried to keep quiet because they know what caused it and the millions of people that don’t know they have it.
I have had Lyme since 2012 and I had a NP find Lyme false positive and less then 2 bands but she decided to treat me for Lyme without sending me to the infectious disease specialist. As soon as I started the doxycycline all the sickness started leaving. I am so thankful she treated me. I was almost in a wheelchair. I saw the infectious disease specialist after I was treated and he said I never had Lyme. I told him he was wrong because I know I had it or I would not be getting better. My heart was racing and my BP shot up so I asked for bloodwork. The infectious doctor said it makes your heart slow down and not speed up. I grew up going to Cranes beach every summer. My mother had a mysterious illness for years that turned to rheumatoid and the meds they gave her hardly helped and killed her at 84. My father had severe dementia that they could not understand for years till they called it Alzheimer's wich killed him at 85. Now I have several family members who could have it but they will never know.
The worst feeling when you feel really bad and your family and friends says it’s because you have too much free time on your hands, you should be positive and don’t think too much.. 😒🙄🙄🙄
People are either ignorant or curious.... Conversing with curious only best and spread intelligence which is sorely lacking in a country which is in a state of flux.
He is such a smart man and such a nice man. The perfect advocate for Lyme awareness. He needs to be appointed to a big position like CDC director, Surgeon General or something like that. Get the ball rolling.
@@soupsandstews625 all that I know is he had gotten very sick again and started getting HLA matched donor T cells to eliminate EBV infected B lymphocytes. That was his last post on FB asking for prayers on June 4, 2020
Misdiagnosed for 37 years, finally diagnosed 2 months ago. Had tachycardia 30 years ago and then heart block 7 years ago, now have pacemaker. Been diagnosed with depression, stress for almost all of the 37 years and couldn't get anyone to listen. Told I was nuts and didn't understand my health. Went from very active person to barely able to walk. So very frustrated with doctors to the point I had anxiety bad when I first went to the Lyme doctor. No one should have PTSD when seeing a doctor. I blame the CDC for not getting info out to doctors about this horrible disease.
That is why I don't believe in any doctor any more. Most of them are all after one thing. They have to be that way, if not they are deprived from their licence.
@@VictoriaSmith-gc5vr How are you feeling these days Victoria? It's been 3+ years since you've posted this comment. Have you gotten at least a little better?
This illness is everywhere, I’m seeing the signs , weight loss , brown age spots appearing , fuzzy hair on nose ears even face sometimes, gut breaks down, heart attacks, varicose veins appear all over , can’t breath and pain like your being stabbed etc etc
Well “post Lyme treatment syndrome” wasn’t even a thing until recently. They estimated 30k cases, and then changed it to 300k. It’s like they are slowly starting to accept there is a problem while protecting their fragile ego. I have been suffering for over a decade. I’m just literally sick, and tired. My test came back negative the first time too. My rash began as what I thought might be poison ivy on my legs, and then suddenly I had bullseyes everywhere. Doctors knew even less then, and said I would only have the bullseye, and only in the place I was bitten. I went months untreated. Then I was under treated.
We've fought the CDC about this for years. They only changed their tune when the NIH wouldn't fund them to create a vaccine because they were low balling the numbers. That's when they went from 30 K to 300K. It was for selfish reasons, because some of those people had investment in the vaccine. The reason it so controversial is because Lyme was discovered in the mid-70s across from a biosecurity lab on Plum Island where there was experimentation on feeding ticks and other biting insects bacteria so their bites would infect humans. There were some children playing at the dock where the ferry brought the employees from their lab to shore near Lyme, Conn. The first cases noticed were juvenile arthritis, Then, the cases begin to spread out from there to the rest of the US. Again, I'm certain the government didn't want to pay for all the cases of Lyme Disease that most likely began with an escape from that lab. But, again, this was a type of gain of function research where ticks were the agent being used to deliver the disease. We were making progress with Congress, to get some type of recognition for Lyme Disease illness and treatment, and then Covid happened. Again, a government not wanting to take responsibility for a mistake, but leaving patients in terrible shape because they are making things in labs that should never have been made. We must as a people take a stand to stop any kind of research whose only purpose is to develop some pathogen or vector able to infect, make ill and kill humans when it would ordinarily not do so. This needs to be against the law. So, it's been deny, deny and deny by the government that people can have long term or chronic Lyme Disease. The heath director of NC finally sent a letter to all doctors instructing them that they were no longer permitted to tell their patients that there was no Lyme Disease in NC, so I know that was a big victory for that state. I'm not certain about other states he may have mentioned. It's too bad this talented doctor had to die early and that he was not taken seriously and given treatment before his heart was destroyed. But, that's the state of our health system and you've now witnessed the total corruption at the CDC and within our government. Only the people of our country can take a stand and demand better. The health of our nation can no longer be determined by the priorities of Big Pharma, but doctors must be given back their practice. Only the people can assist them to make that happen.
neil, i had to listen to this again; so much good info that i need to SHARE it for those just being diagnosed or wondering if they have a tick related disease! thanks so much for sharing your personal story with so many struggles leading up to a new heart. best wishes you are GETTING NEEDED REST NOW to rejuvenate since you were working too many hours daily as oncologist dr. and in a lab for LYME disease purposes. HAPPY EASTER with your wife. all my love and gratitude from ames, iowa .... betty gordon, 50 yr. chronic lyme patient and bart dx diagnosed 2 yrs. ago.
The ER doctors saved my life. I was diagnosed quickly as the second week of illness I woke one morning with facial paralysis (Bell's Palsy). It was my third ER visit within a week - the first visit was because I was covered with large red welts, the second was numb limbs. I was dying fast; I had lost 15 pounds (and I am not obese), was severely dehydrated and my organs were shutting down. I could not speak or talk at that point. After 3 days inpatient on IV antibiotics, I was deemed CURED. I am still suffering two years later and CANNOT convince a doctor that I am STILL dealing with Lyme even though I know it - it is a very distinctive feeling unlike anything else I've ever experienced.
Wow, just wow. This is THE video to watch. This is the video to recommend to others. Did I miss the part where he talks about how he came to his diagnosis of Lyme disease after all he'd been through? I didn't hear that part on here.
Here it is 2024. Four years ago, this amazing man passed away due to problems caused by the post-transplant drugs he had to take. His story is also told in the wonderful documentary, THE QUIET EPIDEMIC, that everyone should watch. The controversy continues. His dream of better days for Lyme Disease victims has not yet come true, though things are ... very slowly ... moving towards more enlightenment. I have Chronic Lyme. I have a wonderful, caring physician, but even she took a very long time before she would write "Post Treatment Lyme Disease" on my chart. I have many of the symptoms Dr. Spector describes in this documentary. I'm currently waiting for the results of my own 72-hour heart monitor tests. I'm scared, and even though things have improved a bit in the medical community where Lyme is concerned, I don't have a lot of hope, should those tests bring bad news. Dr. Neil Spector is one of my personal heroes, and I know that most people in the vast Lyme Disease community feel the same way. Thank you, good sir. You are truly Heavenly Precious to all of us.
I wish I could die from the Lyme that plagues me. It is so painful!!! I'm a victim of medical malpractice and didn't get the long term antibiotics I needed. Please pray God will take me home. I can't take it anymore. I have had fibromyalgia for half my life. I am 49. No doctor will help me. There is no getting better at this painful stage. The docs don't care. I was trained as a PA. I feel just like this precious man!
i know this feeling all to well as i was not this bad for 6 years and now it came back with a vengeance and my body is aching me like a 90 year old!!’God has to help us because no one else will unless u have thousands of dollars!!!!
I believe I got my Lyme from a blood transplant. Dr Spector, thank you so much for this great interview. It offers hope to all of us. What a beautiful story about your new heart ❤️.
What the heck kind of question was that about "whether he felt guilt?" He was told that he didn't have issues and was totally sick. I didn't like that. Honestly, this is also my story, except it went for 20+ years. I didn't have a heart transplant, but I had extreme heart issues. I'm surprised ... and I have this. And we need to start with vector-borne, not Lyme, because it's not always Lyme!
@@fourshore502 I hear what you are saying, but I don't have evidence that he did that. Also, he isn't here any longer. I'm not going to discuss him in a bad way. Plus, he's being asked if he feels guilty for missing his own diagnosis of Lyme. He's not being asked if he feels guilty for dismissing other patients. I re-watched it until that part so I could give a fair response.
Thank you Dr. Spector and Fox5NY for airing this very important special. I am 15 years sick with Lyme, diagnosed properly for under 8 years. Unfortunately the biggest problem is paying for the outside care that is needed. Most get very little in depth treatment and just limp along. I think the public is getting educated slowly but the government health agencies and insurance companies are denying truth and treatment. I am wondering if it is possible to have Lyme bacteria develop into lymphoma? I know of at least one person who was treated for Lyme and then develop adult lymphoma leukemia. I have read there is a possible link to CFS/Fibro and future cancers. We all have heard there may be a link to Alzheimers and Parkinsons, ALS, MS, etc.
Eileen Richter if a person has such an aggressive disease it takes your health away and thus your immune system so we are more susceptible to any illness.
We should come together as a community to deal with the fucked up feeling of people not understanding what we go through. Follow whatever helps you feel better. Ignore what people say. We should come together and find strength. 🧘♀️✊🏽
Bravo to this doctor for coming forward. Testing for Lyme should be one of the first tests. Often people with MS, Alzheimer’s and Parkinson’s, Severe Depression and Anxiety are misdiagnosed when it’s Lyme.
I stumbled upon this interview and can relate. I have been dealing with weird undiagnosed symptoms since 2005. I don't remember being bitten by a tick and don't remember a bulls eye rash. Was first tested for Lyme in 2017 and again 2021 - both positive tests. Was treated by a Lyme specialist in 2017. In 2020 I was diagnosed with a right bundle branch block. I heard Dr. Cass Ingram mention it earlier this year. According to the government, I don't have Lyme. It's a puzzle and takes time for all the pieces to come together. We really have to be responsible for our own health care. Thank you so much Dr. Spector for sharing your story!
I think they will never address this in a proper way. They would have to disclose that they made this by weaponizing syphilis. My husband has been ill for 20 years. It has robbed his life. Very sad to hear this good man passed.😢
Please please do something to change the medicine system, with a better lab work system instead of patients continuing to receive a negative results and being sent away
In the uk no doctor is even looking for Lyme and co infections. My whole family have every symptom yet no help as the test does not work. I’m watching my husband die a slow painful death , he also has had a heart attack at 35 , lungs collapsed, pain , can’t eat on peg feeds that he reacts to , we can’t think straight. It’s truly wicked and there is no help , many millions probably infected and have no symptoms yet..thanks doctor for talking about your case , he seems a nice fella.
There is a German doctor Klinghardt that has a test that is 99% accurate but it's nearly $1000 and he doesn't accept insurance. Many of us are on our own.
Sharon Hansen yes I read about the German tests, £700, even if I could save it , in uk theNHS will still ignore it apparently ! It’s evil to treat us this bad.
Lyme disease is a most horrible disease!!!! Please PLEASE can they do more research and better testing for us!! I know I nearly died!! I felt my spirit leaving me.
The CDC brainwashes the medical community and tells them to tell us there is no such thing as Chronic Lyme. This has almost cost me my life. God bless this man and his family. My condolences to the family.
@16:34 I don't understand it either. So much symptoms, crying out loud about lyme, but nobody believes it's Lyme. And yet, if doctors don't WANT to diagnose it for one of their co-workers, it means they are not allowed to diagnose it. There are unknown reasons or unknown purposes.
I am SO ANGRY with the medical world, but more so the insurance companies & pharmaceutical companies who force doctors to test/treat patients in a certain way against best medical procedures! My son is in exactly THIS situation for 7 (seven) years & no one will even consider it. God help us.
thomas higgins yep, lyme disease is definitely man made it was made for Bio Warfare in the 40's, they were going to drop buckets of these "impossible to cure" infected ticks on Japan. Instead, Plum Island where they were making Bio Warfare and bizarre animal mutations, the ticks that were "made" somehow crawled out and attached to birds, which flew the 50 miles straight to "Old Lyme, Connecticut" they attached to deer, field mice any forest animal, I don't know how or why they got to children 1st, perhaps because they play in trees and grasses were ticks live. 1975 a bunch of children all came down with the same exact strange symptoms. That's where Willy Burgdorferi stepped in. he studied the blood night and day of these children and found the spirochetes which looked exactly the same as the syphilis spirochetes although different. syphilis is easily treatable. Borelia burgdorferi, lyme, is not curable - yet. I don't think it takes a rocket scientist to figure out that someone could take a syphilis bacteria and twist & turn it into a bizarre tick borne illness. Any one reading this search "Plum Island" be prepared, it's very graphic although important to look into.
thomas higgins Lyme (no S) was perhaps experimented with at Plum Island research facility, but it was not created there. It is the most complex bacteria known to man and has been around a very long time. No doubt they tried to alter it for biowarfare. It's actually classified as a bioweapon. Fact. The CDC lies and perpetuates falsehoods and confusion because they falsified testing in Dearborn, Michigan in order to cover up that their Lymerix vaccine made people sick with Lyme.
@@jessd956 All true, Borellia has been around for million years. However they force fed ticks in Plum Island and used everything from Rabies and more. Every single person needs to read the recently released book BITTEN - By Kris Newbury. Explains exactly what the government did w ticks... I'm sure y'all have heard the House passed the bill to force the Pentagon to open those Biowarfare records.
Correction: According to CDC there are minimum of 300,000 infected each year!! Imagine all those getting dx'd with Fibromyalgia or CFS or other garbage diagnosis when its very likely Chronic Lyme and/or tick co-infections. I was dx'd with Fibromyalgia at age 21, and my Mom was age 30 something when she got Fibromyalgia after she gave birth to me so it's likely I got it in utero or she got it before me when we vacationed in Northern WI, an endemic state. Later I was dx'd too. People are suffering in hell due to the ignorance of the medical establishment. Research Plum Island. Research why the testing was put forth too strict so they could make big $$ (Patent) on a lyme vaccine (patent) that actually had to be pulled from the market bc it gave people lyme. The testing was missing the sickest patients bc it only tests for antibodies which means that it misses so many who's lyme disease actually shuts off the immune system, so they test negative. If one cannot afford the more advanced tests you will suffer for the rest of your life, wishing for death due to the pain and life altering fatigue with no treatment and or hope and decades of misdiagnosis. We are then labeled malingerers/lazy by loved ones who don't understand the depth this disease disables you. I was diagnosed finally in my early 40's, did targeted antibiotics for 12 months with some improvement however it didn't help for long. I had lyme by this time over 20 yrs. I became officially disabled at age 46. Please find a cure for those who've had lyme for decades. Please!
This is happening to me now. After having my 2nd child I suddenly have hard blood pressure and Arrhythmia. I contract at Lyme disease when I was 12... My cardiologist had me on I halter monitor for 24 hours I see him tomorrow to get the results...
Thank you for your Story, Dr Spector. I am living in Germany and its exactly the same here. So many people suffering and misunderstood...... .What was the cure for you? Only Antibiotics? Special one?
Wow, I wanted to say that I’m not someone that would go to a MD to for help with Lyme because of all the reasons Dr Spector spoke of and his tragic situation as one in the medical field is just horrendous, but what a doctor he he. Such an open mind which is all that is really required. It’s like so many doctors are brainwashed into thinking they know all, hopefully Dr S can help initiate the change we need to see in the field. Of course we know, don’t we, that big pharma has a massive influence on the doctors today. Great interview, I’m so glad the good doc is still here to help us, and thank you to Precious Vickie, for the gift of life. Xxx
Rip dr. Spector he played the game so well and got these points across very well. He is holding back so much good luck everyone it’s getting harder and harder cdc did just admit faulty information about Lyme in cdc website and need for total overhaul of diagnosis and treatment go figure it’s 100% Rico lawsuit.no settling out of court we need to all come together and get the ball rolling.
I got bit in 2002 and started having problems. It is now 2020 and I finally said to my VA doctor, "Test me for Lyme Disease" since I have had heart issues lately. It came back positive. I am fighting the disease via a natural method not via antibiotics... My immune system should be able to fight it. One reason I know this is my wife is a school teacher and brings home colds and flus all the time. I have not been sick from a cold or flu since 1992.... My VA doctor sent me the antibiotic mentioned in this video... I had to tell my VA doctor what I had, for 3 years they have done nothing to solve or identify my issues. I will go "alternative" and see what happens.
Every doctor should be required to watch this video! Change and awareness is not happening soon enough! I am finally getting the help I need from holistic integrative doctors. Unfortunately insurance does not cover any type of functional medicine doctor or the treatment. So then we desperately Go into debt trying to get our life back.
Why don't doctor's plug our symptoms into a computer algorithm so they aren't relying on things they happen to think of or remember? It seems they are afraid that if they use a computer that their patient will think they are stupid, but it actually makes them stupid to not use a computer to google things or use a symptoms algorithm.
Many of them do use google. But the more complex diseases aren't that easy to diagnose. Take a look into IBM Watson though, scientists are training that work with doctors to help diagnose these difficult diseases.
Adam Covati I'm sure difficult diseases pose a challenge. But often it seems just thinking of the disease requires too much and solving that problem alone is beneficial. Plugging in the symptoms and getting a list of possible diseases and reviewing that list should be standard. A prioritized list and other things could be helpful. I know that list can be long, but it should be done. Also, starting with things that could be cured or are urgent or severe would be logical to put at the top of the list chronologically.
Lyme symptoms can be all over the map, this isn't the flu where most people have similar symptoms. Some with Lyme have heart problems, others have extreme fatigue, yet others have nervous system problems, or a combination of these. Testing for Lyme is another huge problem -- at this time there is NO test that is specific and sensitive for the Lyme pathogens. The CDC and IDSA (Infectious Diseases Society of America) put a lot of faith in the ELISA test which looks for antibodies. Unfortunately it misses around half of the cases, probably because the Lyme bacteria are able to hide from the immune system and the net result is antibodies are low. The CDC now estimates 300,000 new cases of Lyme each year. The reality is we have a large number of people who are very ill and suffering greatly, and fall through the cracks just because their crappy ELISA test was seronegative.
Do you not know about the nano-trap antigen test? That should be specific and sensitive. I got that test and it said I was negative. Also, if there was no test then you wouldn't ever know you had it. It would be like imaginary monsters.
Fibromyalgia is not an illness. It is a symptom. That’s like saying “I have headache.” Or “I have sweating.” Fibromyalgia is an effect, not the cause. I hope you find a smart doctor, because these regular docs aint it.
The ignorance in the medical field were Lyme disease is concerned is disgusting. Iv suffered since 2011 with Lyme I have now gone on to develop Morgellons from Lyme. Which is dismissed as delusional. If I’m delusional my husband, family and friends are delusional aswell then
