https://mailchi.mp/3e52484072a9/4i7vbuaut5-4797205
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*Comment*
I’ve never heard of ozone and IV C causing nerve damage. Ever. My LLMD uses this as a mainstay in treatment and would never use them if they in fact caused nerve damage. Of course the toxin is always in the dose.
Three GLA-funded investigators have been making exciting progress. Dr. Rafal Tokarz’s team has been uncovering key insights into the immune response to specific proteins of Lyme bacteria, paving the way for more accurate diagnostics. Dr. Ben Mamoun has achieved an important milestone by developing the first diagnostic tests for detecting active Babesia duncani infections. Dr. Klemen Strle’s research suggests that specific genetic factors may increase the risk of developing chronic Lyme arthritis. Meanwhile, Dr. Strle’s new findings are shedding light on how certain genetic factors may heighten the risk of developing chronic Lyme arthritis.
Summary:
GLA-funded research continues to shed light on key aspects of Lyme and tick-borne diseases, from diagnostic biomarkers to genetic factors influencing disease outcomes.
Dr. Rafal Tokarz and his team at Columbia University used peptide arrays and machine learning to identify immune reactive proteins in Borrelia burgdorferi to differentiate between phases of Lyme disease. These insights could enhance the accuracy of antibody-based diagnostic tests by improving their sensitivity and specificity (Tokarz et al., 2024).
At Yale University, Dr. Choukri Ben Mamoun and his team developed the first antigen detection tests for Babesia duncani, a parasite often responsible for severe babesiosis. These assays, validated with over 1,700 samples, can detect active infections with high sensitivity and specificity, paving the way for early diagnosis, reservoir animal screening, and improved blood safety (Chand et al., 2024).
Research by Dr. Klemen Strle and his group at Tufts University identified genetic variations associated with chronic Lyme arthritis. These variations are linked to increased inflammation and autoantibody responses, suggesting that some patients may have a genetic predisposition to persistent arthritis in Lyme disease. These findings may guide future biomarker development to predict disease risk (Ehrbar et al., 2024).
These studies reflect GLA’s unwavering commitment to support research that addresses critical challenges in diagnosing and managing tick-borne diseases.
Publications:
Chand, M., Vydyam, P., Pal, A. C., Thekkiniath, J., Darif, D., Li, Z., Choi, J. Y., Magni, R., Luchini, A., Tonnetti, L., Horn, E. J., Tufts, D. M., & Ben Mamoun, C. (2024). A set of diagnostic tests for detection of active Babesia duncani infection. International Journal of Infectious Diseases, 147, 107178. https://doi.org/10.1016/j.ijid.2024.107178
Ehrbar, D., Arvikar, S. L., Sulka, K. B., Chiumento, G., Nelson, N. L. J., Hernandez, S. A., Williams, M. A., Strle, F., Steere, A. C., & Strle, K. (2024). Variants in the late cornified envelope gene locus are associated with elevated T-helper 17 responses in patients with postinfectious Lyme arthritis. The Journal of Infectious Diseases, 230(Supplement_1), S40–S50. https://doi.org/10.1093/infdis/jiae164
https://www.globallymealliance.org/news/decoding-chronic-lyme-investigating-epigenetic-signatures?
By Mase Peterson
In the fight against Lyme disease, cutting-edge research is essential for advancing treatment and prevention strategies. Tanja Petnicki-Ocwieja, PhD, a research assistant professor at Tufts University School of Medicine, is a key contributor to this effort through her work with the Tufts Lyme Disease Initiative. This collaborative group of faculty, staff, and students is dedicated to eliminating the public health threat of Lyme disease by 2030.
Tufts is home to one of the world’s most comprehensive groups of tick-borne disease researchers. Led by co-directors Linden Hu, Paul and Elaine Chervinsky Professor of Immunology, and Robert P. Smith, a physician at Maine Medical Center and professor of medicine, the team recently secured a $20.7 million federal grant, further solidifying Tufts’ position as a global leader in Lyme disease research.
In this Q&A, part of a feature series spotlighting members of the Initiative, Professor Petnicki-Ocwieja discusses her research on the immunological and epigenetic mechanisms underlying chronic Lyme disease and its potential to transform patient outcomes…
Read the rest from Tufts School of Medicine
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**Comment**
I’d love to be hopeful, but when the moniker PTLDS continues to be used it shows an inherent bias that ongoing infections aren’t to blame for people’s ongoing symptoms. This must change.
For more:
https://www.lymedisease.org/overview-lyme-signs-symptoms/
This article was originally posted on Dr. Richard Horowitz’s Medical Detective Substack. You can find more helpful content by subscribing to it here.
Now that you know that Lyme disease presents a regular risk for you and your family due to its worldwide spread, rapidly increasing tick populations due to a warming climate (ticks reproduce faster at higher temperatures), and lack of accurate testing, what are the most common Lyme symptoms, aside from the telltale rash, that you should be looking for to suspect an infection?
There are six major signs and symptoms that allow the Medical Detective to suspect an infection with Borrelia burgdorferi, the agent of Lyme disease:
(1) It is a multisystemic illness. Although it is possible to just have one joint that hurts and may be swollen as your primary symptom, this is not the usual manifestation that I have seen among the 13,000 chronically ill individuals I have diagnosed and treated. A broad range of body systems is usually affected, including the heart, musculoskeletal system, along with neurological, psychological, hormonal, and even immunological consequences, including immune deficiency.
So if you have a multisystemic illness, with many of the symptoms listed below, and your doctor has sent you to specialist after specialist looking for answers, that is a telltale sign Lyme disease may be present.
(2) Symptoms of Lyme disease tend to come and go with good and bad days. In many other chronic illnesses, symptoms tend to be daily without huge variations in intensity or frequency.
(3) The hallmark symptom of Lyme disease is migratory pain. Migratory joint pain, migratory muscle pain and/or migratory nerve pain (neuropathy, which is usually experienced as a burning, tingling, numbness or stabbing sensation) lets the Medical Detective know that a diagnosis of Lyme is likely. (There are only seven diseases that cause migratory pain.)
(4) Symptoms of Lyme disease usually get better or worse with antibiotics. This would not be the case with a chronic fatiguing, musculoskeletal, cardiac, neuropsychiatric illness due to a pure viral infection (which can be the case in CFS/ME, FM, and/or long Covid). Symptoms that can get better (lowering the load of the bacteria) or worse (known as a Herxheimer reaction, which is an inflammatory reaction due to killing off of the bacteria) include the following:
*Muscle and joint pain (which can be migratory in nature)
*Severe fatigue
*Tingling and/or numbness/and/or burning and/or stabbing sensations (neuropathy, which can be migratory in nature)
*A stiff neck
*Headaches
*Light and sound sensitivity
*Dizziness
*Memory and concentration problems
*Mood disorders such as depression and/or anxiety
*Difficulty falling asleep and staying asleep
*Fever and/or chills
*Gastrointestinal issues
*Chest pain with palpitations
*Shortness of breath…and more.
*(I’ll have more details about symptoms in my next article.)
(5) Women usually have a worsening of Lyme disease symptoms around their menstrual cycle: before, during or right afterwards. This is because when estrogen levels drop, the bacteria can become more active.
(6) Finally, there are clues on blood tests that you have been exposed to Lyme disease and associated tick-borne infections, but it is important to know that standard two-tiered testing (STTT), using an ELISA followed by a Western blot–one of the primary ways doctors try to diagnose Lyme disease–is highly insensitive, with the accuracy of about a coin flip.
For early Lyme disease, doctors may use a version of the STTT, called “Modified two-tiered testing (MTTT),” where two enzyme immunoassays (EIAs) are used instead of the traditional Immunoblot. (Although in one Canadian study it was 25% better at diagnosing some early cases, it is still an imperfect test, and other studies have found the MTTT to be more or less equivalent to the STTT.)
Which means that, ultimately, Lyme disease is a clinical diagnosis. An EM rash, the classic rash of Lyme disease, is proof of exposure and does not require a positive blood test. But if you did not see the rash, you need to know that negative testing with a STTT and/or a MTTT does not rule out exposure.
Clues that you have been exposed are Borrelia specific bands in your blood, such as the 23 kDa (Outer surface protein C, i.e., Osp C), 31 kDa (Osp A), 34 kDa (Osp B), 39 kDa and the 83/93 kDa bands. The exception is the 31 kDa band on a Western blot may cross react with viral proteins or reflect an autoimmune process. The 31 kDa band on an Immunoblot, a test that uses recombinant DNA, is however specific, which is why we prefer using Immunoblots as our first line test.
Because testing and treatment can be so complicated, there’s much more info to come….
For now, know that if caught early, the standard treatment for Lyme by some infectious disease doctors is a 14-day course of antibiotics, usually doxycycline or amoxicillin. For an EM rash, some doctors will prescribe antibiotics for up to 30 days.
However, if you have multiple EM rashes, or an EM rash with peripheral nervous system (PNS) involvement (tingling, numbness, burning, and/or stabbing sensations of the arms and legs) and/or central nervous system (CNS) involvement with nerve palsy like Bell’s palsy (where your facial muscles don’t work properly) with associated neuropathy, cognitive difficulties with memory/concentration problems, light or sound sensitivity, dizziness, sleep disorders, new or exacerbated psychological symptoms–short courses of antibiotics will not clear the infection, and you will go on to the chronic form of the disease.
If symptoms persist, brace yourself! You could find yourself at the mercy of the bacteria that will make your life a misery. Like Stephen.
When Stephen came to see me in March 2020, he told me he’d had to drop out of his first semester at college because he couldn’t function anymore. He’d been suffering for 10 years—no, that is not a typo!–from a strange disease that had brought his life to a halt, going from one doctor to another trying to find a cure.
When I asked him to describe his symptoms, he took a deep breath. The list was long. “Well, I’m tired all the time, no matter what I do,” he told me. “My joints and muscles always ache. I get these sharp stabbing pain in my hands or legs or chest. Sometimes it’s a burning pain.” He shook his head, confused. After all these years, he still couldn’t understand why this was happening. It didn’t make sense.
Working on a theory, I asked if he experienced shortness of breath or night sweats. He did. But then, carefully avoiding my eyes, he confessed to the worst symptom of all. “Sometimes —not always—I see or hear things that aren’t really there.”
My heart went out to him. This bright young man with such a promising future had suddenly developed auditory and visual hallucinations when he was 18 for no apparent reason. A psychiatrist decided he was schizophrenic, and prescribed an antipsychotic that came with serious side effects. Once Stephen had this diagnosis, no doctor had ever listened to him the same way again. Until now.
“Have you ever been around cats?” I asked him.
“Not lately,” he said. Then he remembered that, growing up in rural Pennsylvania, he’d had a cat. Inevitably, she had scratched and bitten him more times than he could remember.
“How about tick bites?”
“Sure,” he said. “But that was years ago…”
As I questioned him, the pieces of the medical puzzle started to fall into place. I’d seen the same series of infectious and environmental assaults in patients with this illness for decades. I thought it might also stem from the same infections.
When I asked Stephen to stand up for the physical exam, he felt dizzy. I checked his pulse. It had jumped more than 30 beat per minute and stayed high for several more minutes.
That was a clear sign of POTS (Postural Orthostatic Tachycardia Syndrome), a dysregulation in areas of the nervous system that controls our blood pressure and pulse rate. I see this problem regularly in my chronic Lyme disease patients, those suffering from long Covid, as well as those with problems due to environmental toxins like mold.
When he lifted his shirt so I could listen to his lungs, Stephen muttered, apologetically, “Oh, I have a rash…” That was an understatement. Spreading across his entire middle and upper back was a distinctive purple rash that looked like horizontal stretch marks.
I smiled. “I need to confirm it with blood tests, but I think I know what’s causing your symptoms.”
Stephen was stunned. “What is it?”
“A parasite,” I told him. “It’s called Babesia. It’s a protozoan, like malaria, that can cause sweats, chills, shortness of breath. And I also strongly suspect you have contracted a bacterial infection called Bartonella, often transmitted through cat bites and scratches.”
When we got his laboratory results back, they confirmed my suspicions. “Bartonella could’ve caused all of your neuropsychiatric symptoms—and the rash!” I told him.
That said, a condition as extreme as Stephen’s is not just about parasites and little-known bacterial infections. There were a lot of contributing factors. He’d been exposed to environmental toxins like mold, along with vitamin and mineral deficiencies, and this had exacerbated and compounded his symptoms, preventing his immune system from clearing away any lingering infections and making it difficult for him to detoxify and improve.
With so many things going on, it was clear that Stephen didn’t just have Lyme disease. He had Multiple Systemic Infectious Disease Syndrome (MSIDS). He had multiple overlapping sources of inflammation with downstream effects making him ill.
When I started Stephen’s treatment, using dapsone combination therapy for chronic Lyme disease and Bartonella, he soon felt like a completely different person. For the first time in over a decade, his pain was gone. His joint and muscles didn’t ache. The stabbing, burning nerve pains had disappeared. No more night sweats (we will devote an entire article to Babesia in the future). No fatigue.
Even the hallucinations were almost gone. After struggling to regain his health for so long that he had nearly given up hope, Stephen was almost completely back to normal — in months — after finally getting the right treatment.
And you can get the right treatment too.
In upcoming articles, I’m going to talk much, much more about MSIDS, and the 16-point treatment plan that I used my Medical Detective skills to develop. It’s a treatment plan that works for not only chronic Lyme disease, but many other chronic illnesses which share overlapping biological processes with the three I’s: multiple infections, inflammation, and immune dysfunction.
Coming up next, I’m going to share the Lyme questionnaire, taken from my book. How Can I Get Better? and published in the International Journal of General Medicine. We validated this questionnaire in 1,600 individuals, both healthy and sick, with help from researchers at the State University of New Paltz. I know it’s going to help if you worry at all that you or someone you know might have Lyme disease. Then, in future articles, we are going to dive into the broad range of testing available to help diagnose early and late disease.
This article was originally published on Substack by Dr. Richard Horowitz.
Dr. Richard Horowitz has treated 13,000 Lyme and tick-borne disease patients over the last 40 years and is the best-selling author of How Can I Get Better? and Why Can’t I Get Better? You can subscribe to read more of his work on Substack or join his Lyme-based newsletter for regular insights, tips, and advice.
For more:
https://www.lymedisease.org/four-decades-lyme-misery/
By Christian Scarborough
Nov. 5, 2024
I grew up on a little farm in Northern Virginia, just outside Washington DC, in what was then a very rural, middle-class community. That part of Fairfax County is now one of the wealthiest in the nation.
In addition to being around livestock, grass fields and woodlands, my brothers and I liked to hike, camp, hunt and fish. In Virginia, that meant encountering ticks! We routinely pulled them off our bodies, thinking nothing of it. We also dealt with plenty of fleas from barn cats and house dogs.
As a teenager, I began experiencing severe pain in my hands and other joints. An orthopedic surgeon prescribed me the first NSAID – Clinoril – which was later pulled due to its dangerous side effects. He said he felt strange giving a 16-year-old arthritis medication, but that I clearly had it systemically. This was also around the time I started struggling with anger issues, depression and anxiety. I was given prescription sleeping medication by an internist.
I have always been an adventure athlete and health/fitness geek, which as it turns out has saved me many times. People look at me and say you look amazing at 62, but they have no idea of the battle I’m fighting and why so many health issues I’ve had most of my life now make sense.
It all came to a head in May 2023, when I began to have severe GI issues and lost 27 pounds. After eight months and several false diagnoses ranging from pancreatic cancer to SIBO, the top GI practice in Austin punted. They said, “You have irritable bowel syndrome. Don’t eat anything and take these horrible meds forever.”
Well, the meds were awful. My gut would spasm so violently that it tore up my insides, but the antispasmodic they gave me had terrible side-effects, too. Another medication swung things to the opposite extreme, leaving me constantly balancing between diarrhea and constipation. And along with this I had severe shin and foot pain at night, no energy, blurry vision, an overall feeling I was falling apart.
I finally went to an integrative physician who specializes in treating complicated illnesses. Unlike other doctors, she spent close to two hours with me, asking detailed questions about my medical history. I told her everything.
Even before I had the very expensive, cash-only blood tests, she said, “I’d bet my medical license that you have Lyme.” And boy was she right! It turns out I also have Babesia and Bartonella.
The first thing she did was address my severe GI pain, spasms and diarrhea – and in a way not one GI doctor had ever suggested. She put me on a nightly microdose of naltrexone, and within a week I was much better. At normal doses, naltrexone is used to treat opiate addicts and alcoholics, but you have to think outside the box in order to effectively treat Lyme.
As anyone who is being comprehensively treated for chronic Lyme disease will tell you – treatments aren’t fast, easy, painless or cheap. The months of oral antibiotics made my already fragile gut worse. Then, they switched me to six weeks of intramuscular Rocephin shots, four days a week rotating between my glutes and thighs. It was as brutal as it gets.
Rocephin is so painful it’s mixed with straight lidocaine, and it still feels like someone hit you with a hammer. I am a tough man. But those shots made me want to cry. The volume is so large it has to be split into two syringes of material with the viscosity of motor oil. I sit in an infusion center every week surrounded by very sick people, many with Lyme, mold, cancer or a combination.
I have been getting weekly procaine IVs with vitamin B12. The results have been amazing! I am sleeping through the night for the first time I can remember – albeit I am still taking Clonazepam before bed. And I find myself in a calmer, more relaxed state in general.
Procaine helps reset the central nervous system. In combination with the daily microdose of ketamine I take per my psychiatrist, it has greatly improved my quality of life and my outlook on fighting Lyme. And at least now I can make sense of why I’ve had three total joint replacements, a foot of colon removed, shin pains, foot tumors, insomnia, anxiety, overall fatigue and brain fog, etc.
I am convinced there are many people like me who are suffering from vector-borne illness and have tried everything with no results. They need to know there is hope.
This week the 25th annual conference of the International Lyme and Associated Diseases Society is being held in San Antonio, Texas, and my doctor is one of the featured speakers. I hope healthcare professionals in the audience listen and learn from her.
Christian Scarborough lives in Texas.
Madison Area Lyme Support Group 