102 Comments
Apr 29, 2023Liked by Mary Beth Pfeiffer

Thank you for sharing this piece. I truly hope this becomes a landmark case that it deserves, as this is a global problem. In Australia, Drs have literally be told that Lyme disease does not exist- the primary reasoning, because they believe that Borrelia burgurferi species does not exist in Australia.🤔🤨🤦‍♀️

However, scientists and doctors have repeatedly shown evidence to suggest that there is an Australian species of Lyme. Regardless, the AMA stance is to advise Drs that there is no treatment for Lyme as it does not exist, so refer to mental health and palliate symptoms.😐😑🤦‍♀️

This is global as as a friend of mine, a gifted pianist/singer who is 80% bed ridden with the disease, has a permanent carer and never leaves her house for fear of a debilitating onset of symptoms, I can atest- this disease is devastating and life altering disease.

There are cures for Lyme if caught early, but unfortunately, there is no cure for ignorant and stupid doctors, which does greater harm.

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Apr 29, 2023Liked by Mary Beth Pfeiffer

Ivermectin!

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Apr 30, 2023Liked by Michael Capuzzo

I had no idea when I opened this e-mailed substack article today that it would be about Lyme and written by no less than Mary Beth Pfeiffer! I read The First Epidemic a few years ago and enjoyed every well written word. I cannot recall any of it, of course, as Lyme brain is not kind on the memory.

I appreciate your writing about Julia and the lawsuit. I recall when she was in the news as Pope Francis blessed her. She seems a remarkable young woman with a supportive family. God bless her efforts to become a medical professional. Something has to change in the terrible treatment of many Lyme sufferers.

I have held out hope now for the 12 years since being diagnosed, that my own answers would be right around the corner. I’ve traveled to see Lyme docs as our own state lacks a knowledgeable pool of people to help. And as my symptoms progress and vary, I do not tolerate so many drugs or therapies. And I’ve lost touch with others who suffer since ditching FB a few years ago. It’s lonely and frightening at times.

What can I or any of us do but to put our shaky and unbalanced foot forward each day and carry on as best we can? And keep searching when we are not too tired or in pain to do so.

It is so nice to be able to write something about Lyme suffering! Thank you for the opportunity and for going to bat for all of us who suffer silently.

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Apr 30, 2023Liked by Mary Beth Pfeiffer

Right now, there is a young mother being denied a transplant because she will not take a covid shot. She has antibodies from a natural infection. Like this young woman, another victim of criminal indifference.

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Apr 29, 2023·edited Apr 30, 2023Liked by Mary Beth Pfeiffer

This was an excellent article, much needed in this time we are in. I read a couple of books about Lyme disease and how it was enhanced in biological labs off the coast of Long Island {near Connecticut} and a lab in southwest Montana. Gain of function anyone? It was released and soon after an epidemic started near Lyme, Connecticut. I forget the name of that island where the lab was.

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Apr 30, 2023Liked by Mary Beth Pfeiffer

I’ve just started reading the book Chronic by Steven Phillips MD and Dana Parish, which is all about chronic Lyme and its associated diseases. It’s an excellent resource.

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Lyme affected for 30 years. Had to leave my director’s position at the hospital where I was employed because of pain, confusion and debilitating fatigue. Our one infectious disease specialist was abusive to the people who looked to him for answers. If you felt bad when you made your appointment, you would feel worse after you saw him. He was the Fauci of Iowa. Told me that I could not have Lyme, even though I had all of the symptoms, because there were no deer ticks in Iowa, only in Minnesota and Connecticut. Went for 15 years believing I had Chronic Fatigue Syndrome, until I ordered a test kit from Igenix which came back positive. Did IV rocephin for 17 months, daily, with little change. I would do the research, and went from doctor to doctor looking for someone to treat me. I found a few brave souls, but I was too far along in my infection. Doctors said the spirochete most likely had morphed into other organisms over time, and were embedded in many areas of my body. It is horrible to be that sick and have to deal with people who shame you as a hypochondriac. And if Plum Island is confirmed as a bioweapons lab some day which released this plague on us, well, it is the Wuhan of the West, as far as I am concerned.

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Apr 29, 2023Liked by Mary Beth Pfeiffer

I was in the same situation Julia. Good for you, I hope you win your lawsuit.

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Apr 29, 2023Liked by Mary Beth Pfeiffer

Best wishes, Julia. I predict you will be an excellent doctor. Who listens!

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Once again, Mary Beth Pfeiffer shines with incredible brilliance.

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Apr 29, 2023Liked by Mary Beth Pfeiffer

Mary Beth, Thank you for this and all of your excellent and important reporting.

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Apr 30, 2023·edited Apr 30, 2023

I was successfully diagnosed 45 years after contracting Lyme, with two co-infections, Babesia and Bartonella. A few years ago, the blood banks began refusing donors who answered the question if they’d tested positive for Babesia, so the diseases are known in medical circles. Just like with COVID, the medical community has been given the narrative to follow to cover the government’s part in these subsequent illnesses against its own citizens. I’m very fortunate to be functioning pretty well, but I’ve done my own research and have found physicians open to treatment options these past 10-12 years. I’m currently on a BluePrint®️nutrition protocol with Annodyne®️red light therapy and Rebuilder®️electromagnetic stimulation to repair neurological damage to my feet and hands. I’ve received TMS®️to repair neurological connections in my brain, damaged by the Bartonella. It can be a devastating disease for so many and many can’t afford the non-insurance covered treatments. To allow insurance coverages would open up too much and require the government to admit its role in this travesty.

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May 3, 2023Liked by Michael Capuzzo

I’m so sorry for this young girl. Her story is almost exactly my son’s story. Medical professionals told him he was faking and considered him a psych patient. My husband and I were accused of Munchhausen by proxy and physically abusing him. Seven different hospitals. Cleveland Clinic being one of them. It makes me sick of all the abuse and financial stress it puts the patient and families under. I would be more than happy to share our story with anyone it can help.

Kristen Everett

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Wow!! A poster on another Substack shared this link with me...why?? Because, after 18 months of Medical Twilight Zone , I was diagnosed with late stage Lyme Disease. This was in 1996, I was 44. After testing negative for just about everything and being told I was “ crazy”, I tested positive for Lyme. I was aggressively treated with a course of IV abx and then a lengthy course of Cipro and....wait for it, Plaquinel! Yup, Hydroxychloroquine. And that is why when Fauci, etc declared HCQ to be ineffective and actually dangerous, I knew we were being lied to. About what all, I’m not sure. I know the vaccine would not have qualified for EUA if there was a effective treatment... so, there’s the entrance to this long outrageous rabbit hole we’ve all been shoved down.... my Lyme has never returned, I’m very lucky. I have two finger pads that have remained numb, but that’s it. My heart breaks for this lovely, young warrior!

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May 6, 2023Liked by Michael Capuzzo

I am so happy Julia is perusing her dreams and fighting this. I should have done the same years ago! I went to Cornell, Columbia, Stanford, UCSF and took every test including a spinal tap, MRI, SPECT scan, endoscopy, colonoscopy, nuclear studies, nerve conducting test, poked and prodded, I was told by the head of infectious disease that I needed crazy pills. I could barely walk, could not take care of my toddlers. I was 39, I was giving up on life. A doctor in Petaluma finally diagnosed me with Lyme(he was an integrated doctor and is still my doctor today), I am 56. I paid for a biopsy of my groin lymph node out of my own pocket to prove I had the disease and the tissue came back positive from two labs including UCSF. I was so sick, headaches, stomach issues, nerve problems, burning, list cartilage. The treatments cost me so much money as the insurance would not cover IV antibiotics. We lost our house and all our savings. My husband god bless him said that my girls needed a mama more than a house. I’m still sick because it took five years to diagnose me, but my girls are grown now and I thank god everyday for my doctor and my life. I should have sued, but honestly I never had the strength or the stamina. I’m so proud of Julia! She is an inspiration to all of us!❤️

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May 6, 2023Liked by Michael Capuzzo

God bless you Julia and may your efforts change how lyme is diagnosed and treated.

From a fellow lyme warrior 💚💚💚

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