Having undiagnosed Lyme disease from 1980 to 2016 I support this move. These so called healthcare agencies had 50 years to DO SOMETHING. They failed conclusively.
Learning who these agencies actually are was the only silver-lining to my ordeal. I knew better than to accept anything they suggested going forward.
I took 3 months of Antabuse to break the disease in 2021. Today many are saying that Ivermectin is working to beat Lyme disease. (IVM should be a far less challenging choice compared to Antabuse, imo).
God-bless this administration’s efforts to get to the bottom of what I believe to be yet another weapon formed against us by “our” government.
This is so long over-due. Now, let’s get to the real truth about Lyme disease and how we got here. Thank You sincerely RFK Jr.
Read “Bitten” by Kris Newby for the rest of the story.
As you are publishing material for an alarmist reaction, many of us with actual real-life experience with a child with chronic Lyme Disease and all of its manifestations, are agreeing with everything the Trump administration is doing regarding restructuring federal government health agencies. The medical community shades their eyes when it comes to blatantly obvious symptoms of neurological Lyme Disease. It is sinister and confusing to those seeking relief from a very complex health emergency. Who did and does have the knowledge to assist with overcoming Lyme disease? Functional/alternative medical doctors - all threatened with loss of their medical licenses. Are you interested in hearing our stories? I'm always willing to share our miraculous personal story of my now-grown child's recovery after four tortuous years with debilitating Lyme disease. CDC.....are you listening??
I hear you. I’ve been working for 20 years to improve the situation for Lyme patients. But don’t shoot the messenger. I’m sharing this info before the budget is set in stone, so people can pressure lawmakers to do the right thing.
Thanks Kris for your response. I admire your work. I just think the knee-jerk reaction of many to these budget cut announcements is that the administration is callous and careless, when, in fact, ripping off the bandaid could be the answer to finding some real answers.
As someone suffering with lyme, bartonella and babesia for 8 tortuous years, I would love to hear your story, especially how your child recovered. Thank you.
Carol Jean......I am so sorry. An infusion of artusenate (which is used successfully as a WHO treatment in children with malaria) was a key factor in her recovery, along with the first-line treatments of detox and a super clean diet. I would be happy to share more with you, as I am certain not every treatment works for everybody.
It sounds like you have been diagnosed with three different brands of disease which all have similar symptoms...have you ever considered that your symptoms are actually caused by other things entirely? I have lots of experience resolving these symptoms by addressing breathing, posture, mindset, movement, and input patterns, and forgetting about the whole idea of some germ causing all of these problems.
Doc Smith....she was a three-season athlete with a clean diet prior to the tick bite behind her knee. Difficult to believe, she had never had a sick-child visit at the pediatrician - only annual check-ups. Never medicated. We were reassured on two doctor visits, just days apart, that she simply had a common insect bite, despite the odd facial symptoms she was experiencing. Next came full-blown Bells Palsy and, with odd pushback from the pediatrician, I had to aggressively request a Lyme test. Seven bands of blood tested positive for Lyme antibodies. Too late for the effectiveness of the standard protocol of doxycycline, the Pediatric Infectious Disease Dept. at the Medical College of Virginia had nothing more to offer. Fortunate for us, we were essentially rescued by a knowledgeable, patient functional medicine doctor. A young adult today, she is an elite athlete - a personal trainer by trade. I am certain her prior good health was also a key factor in gaining control over the power of chronic Lyme disease.
People need to be patient. RFK and several family members have had Lyme. One of his son’s still suffers. He has a vested interest in helping this community. All of the money thrown at Lyme studies has gotten us nowhere. It’s overtime for a restructuring.
Throwing money at something is not an automatic-good thing. As a Lyme sufferer for over a decade, I’d call it a waste, with zero to show for it. Up until very recently, these so-called scientists denied that chronic Lyme existed. I’d like to see alternative treatments. This is a complex disease that affects everyone differently. We need clinics where we can go for a few months to be tested and given the help that those with a lot of money get. That’s where the funds should go. Research on us humanely.
here are my personal comments on RESEARCH FOR MY HUSBAND'S FUTURE CASE STUDY TO BE WRITTEN & PUBLISHED IN 2025 after 10.5 yrs. and 10 brain autopsies to date!!
MARCH 15, 2025 UPDATED
• My husband, JACK GORDON, DIED 10.5 yrs. Ago nov. 13, 2014 from 4 TICK-BORNE DISEASES:
•
• Borrelia burgdorferi / chronic LYME disease;
• Bartonella/cat scratch disease, 2 species,
• Relapsing fever,
• Borrelia miyamotoi plus
•
• LEWY body dementia causing jack’s visual/violent hallucinations like robin Williams had!
•
• Parkinson’s disease showed up which he was diagnosed with 5 yrs. Prior to his death; essential tremors 5 yrs. Prior to Parkinson’s diagnosis?!
•
• Shocking also: 2 dozen parasitic, nematode round worms having Lyme disease inside of them!!
•
• Jack’s brain was 1st worldwide with 2 diseases never found together before: lyme disease and lewy body dementia!
•
• ALAN MACDONALD, MD / Pathologist promised me he would write up a case study to be published in a medical journal in 2015-16.
•
• It didn’t happen; pathologist became ill with frontal lobe dementia and his brain couldn’t remember anything, etc.
•
• So this began a long string of additional brain autopsies to get results written up as a case study and PUBLISHED in a medical journal.
•
• Jack’s brain tissue is on his 10th/LAST ?? autopsy in Harvard right now and send 2 wks. Ago to GRACE UNIV., FAIRFAX, VIRGINIA.
•
• His brain has been to des moines, iowa; Oklahoma; florida; minn., penn., California; new York city; new Orleans; Harvard in Mass., and Virginia!
•
• HARVARD has a special molecule testing to check IF he had lyme disease / borrelia burgdorfeti since new York city/new Orleans TICK-BORNE DISEASE RESEARCH CNETER.
•
• NO LYME showed up for these 2 labs since jack’s brain had been in formaldehyde for 7 yrs.
•
• Since neither of their labs could find lyme due to formaldehyde, they had to go this route.
•
• Using the final HARVARD results, NYC/new Orleans
•
• Grace Univ., Virginia, will be looking for an INTACT SPIROCHETE/LYME which hasn’t shown up in any other autopsy done to date.
•
• It’s taken me 10.5 yrs. to get this far folks!
•
• FYI, I’m also 55 years with lyme disease & bartonella.
•
• 35 yrs. MISDIAGNOSED by up to 50 drs. before I received treatment; still have them both!
WINONA, thank you for your complimentary comments above.
i'm 76 now; i may have been tempted years ago, but it's all i can do to keep these autopsies going and asking for updates for medical folks to DUMB IT DOWN for a non-medical like myself.
i also got my local state senator, herman quirmbach, to FINALLY write a bill for AMENDING DEATH CERTIFICATES/DC when brain autopsies are done by medical drs. at NO CHARGE to the families of deceased!
it hasn't gone anywhere to my knowledge as iowa's been working on high priorities. this is TO ME ONLY; not to majority of other folks who have not walked in MY shoes!
also after jack's 1st brain autopsy making worldwide news (that he will NEVER get credit for since it wasn't written up as a case study submitted for medical publication).
i contacted iowa's dept. of health, DOH, patty quinlisk, who stated, YES, jack's death certificate/DC, SHOULD be amended adding all the findings would be CONTRIBUTING FACTORS TO HIS DEATH.
contacted state examiner's office. they/DOH gave DIFFERENT info...not same info.
i finally was able to reach woman signing his death certificate who i'd never met in 4 months of long-term living vs. nursing home.
she made same calls as me getting same differing info.
SHE COULD AMEND it since SHE signed it but iowa's laws stated then could only be changed in 6 months unless PERSON SIGNING DC amended it.
she felt uncomfortable and would NOT amend it herself!! grr.
i had my lawyer/nephew make calls; he got the same runaround we did.
when talking to IOWA's DOH NEW DIRECTOR, she told him if i PURSUED this she would get iowa's attorney general lawyers involved in FIGHTING THIS!!
he told me, drop it as it would cost me $40,000+ to pursue this as legal bills had crossed his desk when folks were pursuing other legal matters involving drs. testifying, etc. and their prep time/work!! i did.
state senator wrote it but they showed 10 years in there. i contacted him saying they had to be changed as it's 10.5 yrs. already; he agreed.
i also had liz horn read this....bay area lyme disease bio bank director. she said it was all worded fine covering all bases. sen. herman was glad i'd done that; felt good it was a go ;)
i'll keep you all informed....SHOUTING IT EVERYTHING!! thanks again for your moral support and suggestion on writing a book.
as you can tell, i'm a wordy person once i get wound up. i used to have diaries but burned them when i moved to independent sr. living. betty, iowa sr.
It seems that all the symptoms we attribute to ‘Lyme Disease’ are more rationally-explained by diet, lifestyle, etc…This is the case for nearly all supposedly unique diseases, and it would be great if all such funding was cut because it is all nonsense scapegoating anyway. The suffering and symptoms are real. The only way to resolve them to health is via daily practice over a long period of time. When we scapegoat some microbe for our ills, we lose the opportunity to make the actual changes needed.
Name-calling is anti-scientific...You are doing that because you are all emotional, and not thinking rationally. Stop taking things personally, and then you can return to the conversation like an adult. Or, just believe whatever you are told by people trying to sell you powders, pills and procedures, and enjoy your pharma karma.
By 'school', you mean the institutions created by and for the oil industry over a century ago which have inverted health and dis-ease, creating pseudoscience to sell pills and potions...You can keep that 'school' for yourself. I have a real education based in legit science that was developed long before capitalist pigs decided to take advantage of the situation.
Every single symptom is explained by diet and lifestyle. Headache, fever, fatigue...these are the same symptoms ascribed to countless fake disease brands. The symptoms are real, but they are really not caused by the microbes we scapegoat. If you want to actually heal up, you can do it, and it is free, but not easy. You have to do the actual work to breathe in a healthy way 10,000 times per day, instead of breathing in a way that creates more dis-ease with each breath cycle 20,000 times per day. You have to do the work to have healthy posture so you can have full blood flow to the brain, more airway, etc...and then the fatigue, brain fog and other symptoms will resolve. You have to do the work to have a good mindset so you can maintain the healthy breathing and posture despite ups and downs of daily life. You have to do the work to move instead of being sedentary. You have to do the work to improve dietary and other inputs so the vital organs are well-rested instead of over-worked.
Or, you can believe some bullshit story from The Science about how this or that tiny microbe is the lone culprit, that what you need is more products and technology to test you, and that you do not have to make any actual changes from within.
The sheep have risen. The dumping of piddling $55M funds to old, outdated leadership and power brokers, and Profit takers is coming to an end. I hope. I am told to have hope. Trust will likely not resume for the CDC again until it is doing what it was designed for. And then it failed due to corrupt leadership. The medical community requires leadership that leads, not controls. You can shut down IDSA also. IN MY OPINION
Having undiagnosed Lyme disease from 1980 to 2016 I support this move. These so called healthcare agencies had 50 years to DO SOMETHING. They failed conclusively.
Learning who these agencies actually are was the only silver-lining to my ordeal. I knew better than to accept anything they suggested going forward.
I took 3 months of Antabuse to break the disease in 2021. Today many are saying that Ivermectin is working to beat Lyme disease. (IVM should be a far less challenging choice compared to Antabuse, imo).
God-bless this administration’s efforts to get to the bottom of what I believe to be yet another weapon formed against us by “our” government.
This is so long over-due. Now, let’s get to the real truth about Lyme disease and how we got here. Thank You sincerely RFK Jr.
Read “Bitten” by Kris Newby for the rest of the story.
As you are publishing material for an alarmist reaction, many of us with actual real-life experience with a child with chronic Lyme Disease and all of its manifestations, are agreeing with everything the Trump administration is doing regarding restructuring federal government health agencies. The medical community shades their eyes when it comes to blatantly obvious symptoms of neurological Lyme Disease. It is sinister and confusing to those seeking relief from a very complex health emergency. Who did and does have the knowledge to assist with overcoming Lyme disease? Functional/alternative medical doctors - all threatened with loss of their medical licenses. Are you interested in hearing our stories? I'm always willing to share our miraculous personal story of my now-grown child's recovery after four tortuous years with debilitating Lyme disease. CDC.....are you listening??
I hear you. I’ve been working for 20 years to improve the situation for Lyme patients. But don’t shoot the messenger. I’m sharing this info before the budget is set in stone, so people can pressure lawmakers to do the right thing.
Thanks Kris for your response. I admire your work. I just think the knee-jerk reaction of many to these budget cut announcements is that the administration is callous and careless, when, in fact, ripping off the bandaid could be the answer to finding some real answers.
As someone suffering with lyme, bartonella and babesia for 8 tortuous years, I would love to hear your story, especially how your child recovered. Thank you.
Carol Jean......I am so sorry. An infusion of artusenate (which is used successfully as a WHO treatment in children with malaria) was a key factor in her recovery, along with the first-line treatments of detox and a super clean diet. I would be happy to share more with you, as I am certain not every treatment works for everybody.
Yes, please. I would like to learn more.
You can send a message on SS, if you want. Thank you.
It sounds like you have been diagnosed with three different brands of disease which all have similar symptoms...have you ever considered that your symptoms are actually caused by other things entirely? I have lots of experience resolving these symptoms by addressing breathing, posture, mindset, movement, and input patterns, and forgetting about the whole idea of some germ causing all of these problems.
Ok, so please tell me what causes diabetes? No DX, but all the symptoms. Is that caused by incorrect posture, breathing too?
This relates more to inputs. If a person stops eating carbs, the ‘diabetes’ will resolve to health quickly, within weeks or months.
Respectfully, have you considered that your child’s symptoms are not caused by the tick, but other factors such as diet, lifestyle, etc…?
Doc Smith....she was a three-season athlete with a clean diet prior to the tick bite behind her knee. Difficult to believe, she had never had a sick-child visit at the pediatrician - only annual check-ups. Never medicated. We were reassured on two doctor visits, just days apart, that she simply had a common insect bite, despite the odd facial symptoms she was experiencing. Next came full-blown Bells Palsy and, with odd pushback from the pediatrician, I had to aggressively request a Lyme test. Seven bands of blood tested positive for Lyme antibodies. Too late for the effectiveness of the standard protocol of doxycycline, the Pediatric Infectious Disease Dept. at the Medical College of Virginia had nothing more to offer. Fortunate for us, we were essentially rescued by a knowledgeable, patient functional medicine doctor. A young adult today, she is an elite athlete - a personal trainer by trade. I am certain her prior good health was also a key factor in gaining control over the power of chronic Lyme disease.
Thank you for sharing! Glad she is in good health nowadays, and wish you both wellness.
People need to be patient. RFK and several family members have had Lyme. One of his son’s still suffers. He has a vested interest in helping this community. All of the money thrown at Lyme studies has gotten us nowhere. It’s overtime for a restructuring.
Yes. I’m no big fan of the CDC’s Lyme history, but cutting $32M from an already tiny research budget is significant.
Throwing money at something is not an automatic-good thing. As a Lyme sufferer for over a decade, I’d call it a waste, with zero to show for it. Up until very recently, these so-called scientists denied that chronic Lyme existed. I’d like to see alternative treatments. This is a complex disease that affects everyone differently. We need clinics where we can go for a few months to be tested and given the help that those with a lot of money get. That’s where the funds should go. Research on us humanely.
here are my personal comments on RESEARCH FOR MY HUSBAND'S FUTURE CASE STUDY TO BE WRITTEN & PUBLISHED IN 2025 after 10.5 yrs. and 10 brain autopsies to date!!
MARCH 15, 2025 UPDATED
• My husband, JACK GORDON, DIED 10.5 yrs. Ago nov. 13, 2014 from 4 TICK-BORNE DISEASES:
•
• Borrelia burgdorferi / chronic LYME disease;
• Bartonella/cat scratch disease, 2 species,
• Relapsing fever,
• Borrelia miyamotoi plus
•
• LEWY body dementia causing jack’s visual/violent hallucinations like robin Williams had!
•
• Parkinson’s disease showed up which he was diagnosed with 5 yrs. Prior to his death; essential tremors 5 yrs. Prior to Parkinson’s diagnosis?!
•
• Shocking also: 2 dozen parasitic, nematode round worms having Lyme disease inside of them!!
•
• Jack’s brain was 1st worldwide with 2 diseases never found together before: lyme disease and lewy body dementia!
•
• ALAN MACDONALD, MD / Pathologist promised me he would write up a case study to be published in a medical journal in 2015-16.
•
• It didn’t happen; pathologist became ill with frontal lobe dementia and his brain couldn’t remember anything, etc.
•
• So this began a long string of additional brain autopsies to get results written up as a case study and PUBLISHED in a medical journal.
•
• Jack’s brain tissue is on his 10th/LAST ?? autopsy in Harvard right now and send 2 wks. Ago to GRACE UNIV., FAIRFAX, VIRGINIA.
•
• His brain has been to des moines, iowa; Oklahoma; florida; minn., penn., California; new York city; new Orleans; Harvard in Mass., and Virginia!
•
• HARVARD has a special molecule testing to check IF he had lyme disease / borrelia burgdorfeti since new York city/new Orleans TICK-BORNE DISEASE RESEARCH CNETER.
•
• NO LYME showed up for these 2 labs since jack’s brain had been in formaldehyde for 7 yrs.
•
• Since neither of their labs could find lyme due to formaldehyde, they had to go this route.
•
• Using the final HARVARD results, NYC/new Orleans
•
• Grace Univ., Virginia, will be looking for an INTACT SPIROCHETE/LYME which hasn’t shown up in any other autopsy done to date.
•
• It’s taken me 10.5 yrs. to get this far folks!
•
• FYI, I’m also 55 years with lyme disease & bartonella.
•
• 35 yrs. MISDIAGNOSED by up to 50 drs. before I received treatment; still have them both!
OMG...... you should write your own book about your and your husband's life with Lyme, I'd love to read it.
WINONA, thank you for your complimentary comments above.
i'm 76 now; i may have been tempted years ago, but it's all i can do to keep these autopsies going and asking for updates for medical folks to DUMB IT DOWN for a non-medical like myself.
i also got my local state senator, herman quirmbach, to FINALLY write a bill for AMENDING DEATH CERTIFICATES/DC when brain autopsies are done by medical drs. at NO CHARGE to the families of deceased!
it hasn't gone anywhere to my knowledge as iowa's been working on high priorities. this is TO ME ONLY; not to majority of other folks who have not walked in MY shoes!
also after jack's 1st brain autopsy making worldwide news (that he will NEVER get credit for since it wasn't written up as a case study submitted for medical publication).
i contacted iowa's dept. of health, DOH, patty quinlisk, who stated, YES, jack's death certificate/DC, SHOULD be amended adding all the findings would be CONTRIBUTING FACTORS TO HIS DEATH.
contacted state examiner's office. they/DOH gave DIFFERENT info...not same info.
i finally was able to reach woman signing his death certificate who i'd never met in 4 months of long-term living vs. nursing home.
she made same calls as me getting same differing info.
SHE COULD AMEND it since SHE signed it but iowa's laws stated then could only be changed in 6 months unless PERSON SIGNING DC amended it.
she felt uncomfortable and would NOT amend it herself!! grr.
i had my lawyer/nephew make calls; he got the same runaround we did.
when talking to IOWA's DOH NEW DIRECTOR, she told him if i PURSUED this she would get iowa's attorney general lawyers involved in FIGHTING THIS!!
he told me, drop it as it would cost me $40,000+ to pursue this as legal bills had crossed his desk when folks were pursuing other legal matters involving drs. testifying, etc. and their prep time/work!! i did.
state senator wrote it but they showed 10 years in there. i contacted him saying they had to be changed as it's 10.5 yrs. already; he agreed.
i also had liz horn read this....bay area lyme disease bio bank director. she said it was all worded fine covering all bases. sen. herman was glad i'd done that; felt good it was a go ;)
i'll keep you all informed....SHOUTING IT EVERYTHING!! thanks again for your moral support and suggestion on writing a book.
as you can tell, i'm a wordy person once i get wound up. i used to have diaries but burned them when i moved to independent sr. living. betty, iowa sr.
So sad, having pulled 2 ticks off me in the past 3 days, just saying!
Wasting money
Considering the government weaponized the ticks to screw up Cuba, they likely have the cure. They need to be forced to reveal it!
Minor Crumbs!! get rid of the damn PREP act would you! Hey! quit screwing around!!
It seems that all the symptoms we attribute to ‘Lyme Disease’ are more rationally-explained by diet, lifestyle, etc…This is the case for nearly all supposedly unique diseases, and it would be great if all such funding was cut because it is all nonsense scapegoating anyway. The suffering and symptoms are real. The only way to resolve them to health is via daily practice over a long period of time. When we scapegoat some microbe for our ills, we lose the opportunity to make the actual changes needed.
Name-calling is anti-scientific...You are doing that because you are all emotional, and not thinking rationally. Stop taking things personally, and then you can return to the conversation like an adult. Or, just believe whatever you are told by people trying to sell you powders, pills and procedures, and enjoy your pharma karma.
By 'school', you mean the institutions created by and for the oil industry over a century ago which have inverted health and dis-ease, creating pseudoscience to sell pills and potions...You can keep that 'school' for yourself. I have a real education based in legit science that was developed long before capitalist pigs decided to take advantage of the situation.
Every single symptom is explained by diet and lifestyle. Headache, fever, fatigue...these are the same symptoms ascribed to countless fake disease brands. The symptoms are real, but they are really not caused by the microbes we scapegoat. If you want to actually heal up, you can do it, and it is free, but not easy. You have to do the actual work to breathe in a healthy way 10,000 times per day, instead of breathing in a way that creates more dis-ease with each breath cycle 20,000 times per day. You have to do the work to have healthy posture so you can have full blood flow to the brain, more airway, etc...and then the fatigue, brain fog and other symptoms will resolve. You have to do the work to have a good mindset so you can maintain the healthy breathing and posture despite ups and downs of daily life. You have to do the work to move instead of being sedentary. You have to do the work to improve dietary and other inputs so the vital organs are well-rested instead of over-worked.
Or, you can believe some bullshit story from The Science about how this or that tiny microbe is the lone culprit, that what you need is more products and technology to test you, and that you do not have to make any actual changes from within.
The sheep have risen. The dumping of piddling $55M funds to old, outdated leadership and power brokers, and Profit takers is coming to an end. I hope. I am told to have hope. Trust will likely not resume for the CDC again until it is doing what it was designed for. And then it failed due to corrupt leadership. The medical community requires leadership that leads, not controls. You can shut down IDSA also. IN MY OPINION
LYME IS MAN MADE- DEMONS- AIDS IS MAN MADE. C19 IS MAN MADE. …DEFUND DISSMISS—-GET THE ANTIDOTE