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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My Australian mum came to visit me in Finland and unfortunately got Lyme disease during her short stay (called Borrelia here). She noticed the rash on her way back to Australia and I told her to go and get antibiotics and explain to the doctor it’s common here and she should be treated asap. It took ages for the doctors there to respond properly even when I said I’d get my doctor friends here to contact them and give them advice. She finally had treatment and has no long term impact but it was so frustrating!! Her blood test was sent from Adelaide to Sydney to be tested. Seems ridiculous! With the travel people do more doctors globally should be aware. Plus there is a mutation that can effect the ability to digest red meat (I know of a few people here in my region who have it) and bizarrely the other place it’s common is an area around Sydney! From tick bites!

Let’s hope the documentary helps people with Lyme’s disease.

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Apr 29, 2023Liked by Mary Beth Pfeiffer

Ivermectin!

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Are you saying ivermectin is a treatment for chronic Lyme as well? I've been battling for over 20 years. I woke up one morning and could hardly walk. The sheet could not even touch my legs went to the doctor they tested for lupus it was negative, and he chalked it up to a bacterial or viral infection. Several days later I was able to walk normal again fast forward 20 years I've been diagnosed with Dysautonomia pots like symptoms brain fog and now 52 needing both hips replaced. I have severe joint pain throughout my body. The second time I contracted Covid. I was treated with ivermectin and felt better than I had in years. Have you heard of ivermectin treating people with chronic Lyme?

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Please consider watching Dr JP Saleeby's talk at the FLCCC conference in April. He is a lymes doc who then started treating covid issues. Anyone can watch for free.

Prayers to your healing!

https://covid19criticalcare.com/courses/conference-2023-spring-basic/

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Yes. It is non toxic. There are no adverse affects.

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Thank you. Now where to find this since Covid they have pulled off shelves in a lot of places. Go figure🥲

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Dr JP Saleeby's talk at the FLCCC conference - lymes doc who also treats covid issues. https://covid19criticalcare.com/courses/conference-2023-spring-basic/

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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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author

Thank you for your beautiful and heartfelt comment, JC. There is injustice and denial. Too many suffer in silence. What can we do? As you say, keep putting one foot in front of the other… make small differences and big differences. Share the article, gently grab the ear of a doctor who might listen for a minute, see thd film, write to your local legislator. Clearly, this must come from the ground up.

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You may want to turn to nutritional therapies since you are having trouble with other treatments. I was skeptical of herbs, but purchased Reishi mushrooms first, along with The Herb Bible by Earl Mindell, a pharmacist. A few weeks later I added Echinacea/Goldenseal. Then Colloidal Silver, which was the new thing back in the 90’s. WNot medical advice, just another pathway. The natural therapies boosted the effects of the antibiotics, just as they do with chemotherapy.

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I just remembered it was Maitake mushrooms I started with. Shiitake and Cordyceps followed. Within echinacea and goldenseal, the echinacea builds the immune system so is taken longer than the goldenseal, which kills the pathogen. It is used for 10-14 days at a time, then stop so it doesn’t build up in the system. Echinacea can be taken until the immune system is stronger.

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I definitely need a new something:)

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I hope you find it soon. I took afternoon naps too. I was a young mother then and not getting enough sleep. Amazing power of sleep.

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Please consider watching Dr JP Saleeby's talk at the FLCCC conference in April. He's a lyme doc who started treating covid issues. https://covid19criticalcare.com/courses/conference-2023-spring-basic/

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Oh thank you for providing this. I knew he was going to be there but lost track of how I could watch what he spoke about.

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You're most welcome. There's a dr who is working on summarizing all the talks from the conference. You can find him on substack...an "old doc". I am following him and will come back to this comment thread and post what he wrote about Saleeby's talk when I see it.

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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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Plum Island... and the deer would would swim during low tide across the Long Island Sound to Plum Island to feed on the Beach Plum shrubs... that’s where the ticks attacked themselves to the deer and arrived in Old Lyme, CT.... if still in publication , Polly Murray’s “ The Ever Widening Circle.” Also tick carrying culprits are Canada Geese.

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Thank you! I will check it out. I read a book all about Plum Island and the lab in southern Montana. I need to get it back out and revisit it.

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Perhaps Plum Island?

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Yes it appears that Lyme disease is a bio weapon like Covid, and might have been cooked up in a military biolab on Plum Island. The same misdiagnosis and medical malpractice have taken place in France, and one of our beloved freedom fighter doctor, Christian Perrone, had been fighting for treatment for Lyme for decades already. It’s most peculiar that (most of) the medical apparatus reacted in the very same way about Lyme as they are now with the vaxx injuries - can’t be THAT! It’s in your head! I’m disgusted by the medical profession in general (and I come from a family of doctors- not one that I could respect during the plandemic- wondering what my father (also a doctor) would have made of the madness; thankful he died 10 years ago and avoided this nightmare...). A doctor I’d trust is one who would have lost his/her license.

Kudos to Julia and her amazing spirit!

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Apr 30, 2023Liked by Mary Beth Pfeiffer

Beautifully stated. Thank you.

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May 6, 2023·edited May 6, 2023

Worth noting: Apparently Lyme existed in nature prior to the Plum Island experiments. This is where you lose a lot of people, so it's an important distinction.

Lyme may not have been CREATED by the government, but like Covid, it may have been worsened by experimentation. That's the real story, the real place for a lawsuit. The government should be paying the medical bills for all patients with Lyme Disease, plus monetary damages for our suffering.

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Maybe that's why the government denies it is more than a 2 week illness. The money it would cost them.

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Yes, that is exactly why. Because the whole “this is not a big deal, it can easily be cured with a short course of antibiotics” thing is based on the version of Lyme that used to exist in nature before the government messed with it. The current version of Lyme is different, but they can’t/won’t acknowledge that, so their treatment and testing guidelines remain stubbornly stuck decades in the past.

It’s similar to Covid, which is a coronavirus, similar to the common cold and other coronaviruses which are not normally that bad. But the Chinese government messed with it and made it worse and it got out and became such a big mess that it couldn’t be ignored anymore.

If there more awareness of the horrible impacts of Lyme and how many people it is affecting, governments would be forced to do something about it. But as it is, it remains a silent pandemic, and governments refuse to blow the alarm because if they do that they will have to deal with it and to acknowledge that they’ve been wrong about everything they’ve been saying this entire time.

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SMH!

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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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Did it give you any course of action to combat chronic Lyme on your own? I've tested from igenix and 2 of my bands were positive 31, and 41 which meets IGX criteria of being positive but they did recommend one more blood test 489 which was 31kDa Eptitope and it came back positive. That particular Dr wanted to do a ton on antibiotics first some antifungal stuff to combat the candida that tested positive, then I also tested positive for Epstein Barr. It just seemed very overwhelming and here I am 7 yrs later and I have the Dysautonomia and horrible bone on bone in my hips to only be 52. Guess it's gone after my joints now. I'm going to try the ivermectin if I can find it. I'm in TN. Thank you

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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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author

I am so sorry for all you have been through. Your story is tragically common. We must change this. Please share my article on social media to get this message out. Julia's can be a case that makes an important point. Maybe doctors will listen.

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Apr 30, 2023Liked by Mary Beth Pfeiffer

Just like with Covid, the majority of doctors are owned and financed by big pharma. I am afraid this will not change until doctors review their Hippocratic oath and refuse to comply with a corrupt system. Until that happens, we must continue to create a culture that will listen, provide care and be compassionate toward Lyme victims. Thank you for publicly defending those devastated by Lyme and standing with us.

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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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Interesting notice; are comments limited in length?

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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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What kind of IV antibiotic? And how long did you take cipro and hydro?

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It was so long ago, I don’t know what the IV was. I took Cipro and PlaQUINel for 60 days… symptom free and something with my sed rate returning to normal… I was 45/46..im 71 now.

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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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Could you please tell me the name of the Dr. Who is treating you in Petaluma CA

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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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