LivLyme 2023

LivLyme once again had a wonderful, information filled conference this year in 2023, with many physicians and specialists sharing new information as well as reviewing old experience and data; both of which are relevant to patients and practitioners working with chronic conditions.

The notes below are by no means a comprehensive log of the information presented, but rather what I felt were either new interesting pieces of information or excellent summaries of experience in treating these conditions in patients.

Dr. Alan Macdonald and microscopy studies

Dr. Alan Macdonald MD had a presentation updating some of his pathology studies. He reported on information of ELISA seronegative lyme patients who actually did have antibodies against lyme on further direct, microscopic exam. ELISA testing is the first step in the usual 2 step testing of lyme disease by CDC criteria. ELISA looks for antibodies against lyme, but the antibodies have to be unbound, free in the serum, as the blood sample is allowed to clot and then the red cells are separated from the free floating serum before being sent to the lab.

In his data, he found in a group of ELISA negative patients that were suspected of having chronic lyme infection, he found on microscopic visualization that they had spirochetes in their blood, and in fact did have antibodies bound to the spirochetes. He used a Coomb's regent (a compound that binds to human antibodies) and found that the spirochetes were coated in these antibodies, which were absent from the free floating serum.

There was some discussion that such a test could be used to follow activity of a patient's disease, and when I was researching this possibility, his published article came up - which is open access and available to review.

He did speak briefly about Lewy bodies (associated with various neurogenerative conditions including Lewy Body Dementia) having whole spirochetes, spirochetal DNA as well as protein. He has a podcast on Lewy bodies and Lyme as well.

Bartonella talk

Dr Ed Breitschwerdt, DVM, had a talk on bartonella. I have used his lab on occasion, Galaxy Diagnostics for their bartonella culture. This is a test where they culture whole blood and serum after inoculation on specialized media that allows bartonella growth, and then tests for PCR of bartonella.

Amongst many interesting points, Dr Breitschwerdt discussed how most patients on treatment with resolution of bartonella will go seronegative, meaning their antibodies will disappear. He also noted that in studies in veterinarians (who have higher incidence of exposure working with animals), the most common new symptom onset included headaches, insomnia, irritability, muscle pain and memory loss. A cross sectional study of veterinarians vs non-vet healthy controls showed that 28% of the veterinarians were positive for bartonella vs none of the controls.

His research and follow up has found that doxycycline as a sole antibiotic is in many instances ineffective for bartonella.

He also described a case (that is also described well on invisble.international) of a pediatric autoimmune neuropsychiatric syndrome (PANS) patient who had a sudden onset of psychosis, hallucinations, and delusions. He had not responded to psychiatric treatment nor to immunosuppressive treatment for autoimmune encephalitis. (The latter is very interesting to me as I do find that many patients respond to a variety of immune modulating treatments, though I have not treated the symptoms of frank psychosis).

Culture and sequencing studies had confirmed bartonella infection, which was run after a nurse had recognized linear tracts / rashes on his thigh and axilla. These can mimic "stretch marks" but are sometimes indicative of bartonella infection.

In this case, the patient did not respond to doxycycline alone initially, but after a variety of combination therapy protocols he did respond and was able to wean off his psychiatric medications.

Of course, this does not mean all such cases are related to infection, in fact likely it is a very, very small proportion. But it may indicate that sole infection with bartonella should be considered if there is a sudden onset of neuropsychiatric symptoms. This is often already considered in the case of streptococcal infection and pediatric cases of sudden onset psychiatric conditions post infection.

Dr Scott Miller on his experience with atypical multiple sclerosis and lyme disease

Dr Miller presented at the conference sharing his experience and exposure to lyme in the context of a patient who had been diagnosed with ALS, but who had MRI findings that were similar to multiple sclerosis. Dr Miller is an internal medicine physician whom had retired in 2008. He used his expertise to search the literature for patients who had physical exam findings of ALS, but MS like MRI findings - lyme disease was one of the things that came up.

He shared his experience with focusing on specialty labs that focus on tick borne illnesses citing that these labs will use many different species of Borrelia in their testing instead of a single strain. When his patient was treated based on this positive specialty testing, she outlived her prognosis significantly and passed away from an unrelated cause.

He described provocative testing in which he had experience with giving presumptive treatment for lyme infection first, in order to prevent immunoevasion and thus a false negative test. This is essentially referring to the theory that lyme can evade the B cells of the immune system and thus patients can have a less pronounced antibody response, often thus showing as negative when they may in fact be infected. He described his experience that when patients were treated with often a month of antibiotics first, their serology testing often was positive, at a frequency higher than without provocative treatment.

There was discussion of treating different morphologies of lyme, including the persister forms. Often, this would involve metronidazole as a tratment option, or herbal options. He referenced a study from Norway in 1990, in which conventional antibiotics did not affect the cystic persister forms of borrelia, but when metronidazole was added, the efficacy of the antibiotics was restored.

Dr Richard Horowitz on his high dose anti-tubercular antibiotic studies

Dr Horowitz shared his experience with high dose, pulsed dapsone therapy. He has described an 8 week protocol that had approximately a 50% success rate for chronic lyme disease and post-treatment lyme disease syndrome. He found that in his most difficult patients, there were often coinfections of babesia and bartonella that were driving some of the chronic symptomology, and found that higher dose pulsed dapsone was effective in eradicating the coinfection persistence. His experience is described on his website.

Dr Horowitz is well-known for his MSIDS map, which describes many other factors that drive inflammation. He notes that dysbiosis with firmicutes and prevotella driving inflammation, alongside food sensitivities, intestinal hypermeability, and mast cell issues. He describes poor sleep driving elevated inflammation with increased cytokines such as IL-6, as well as finding mold toxins in a high percentage of his patients.

Part of his holistic treatments include blocking microglial cell activation (neurological inflammation) with low dosages of medications, alongside diets that were low in allergenic foods, sugars, red meat and eggs. Hormones such as adrenals and sex hormones were balanced, and a focus on mitochondrial support to offset the side effects of the medications used was discussed.

Importantly, he also described limbic retraining programs. I have found such programs to be profoundly useful in some of my own patients as well. They are essentially self-taught through lectures and workbooks online.

Dr Neil Nathan on the connections between mold toxins and lyme

I have written about mold toxins elsewhere on this website. Dr Nathan reviewed some of his extensive experience during this talk as well.

He described that mold "weakens the immune system" which can predispose to chronic lyme after infection. The symptoms are closely related and they both seem to be triggers for limbic system dysfunction (the danger, emergency response) as well as mast cell activation type syndromes.

Dr Nathan described his preference to treat mold toxicity first, in a patient who is presenting with both conditions.

He described an extensive list of symptoms that are often seen in mold toxin patients, including:

• fatigue, weakness
• muscle pains
• ice pick or lightning bolt type pain
• headache
• sensitivity to light
• vision changes
• sinus congestion, cough
• shortness of breath or air hunger
• abdominal pain, diarrhea
• joint pain and morning stiffness
• cognitive impairment
• skin hypersensitivity
• mood swings
• temperature swings
• numbness and tingling
• frequent urination with and without thirst
• nausea

He had emphasized that he often came across mold as being an important factor in those patients who were diagnosed with an atypical presentation. This could include "atypical rheumatoid arthritis", or "atypical Parkinsons".

Symptoms that Dr Nathan saw as being more indicative of mold toxicity patients:

• electrical shocks
• ice pick pains
• paresthesias that did not follow the usual nerve distribution
• internal vibration sense (though he noted this is often seen in his patients with bartonella infection)
• increased "sensitivity to everything"

Testing involved usually spot urine testing for mycotoxins, often after provocation with glutathione.

Treatment of mold toxicity 1) eliminate daily life exposure eg home and work' 2) eliminate the toxins from the body 3) most of Dr Nathan's patients were colonized - and if no response to detoxification then he would consider use oral and nasal antifungal treatment

Testing home for mold: 1) mold pour plate: buy plate, take top off for 2 hours, replace the top. 2) ERMI testing 3) independant environmental evaluation 4) remediation may be expensive and may not work

In addition to discussing the usual detoxification treatments, Dr Nathan shared his impression that a basic diet for such patients typically was higher protein and lower carbohydrate. He preferred something along the lines of 20-60 grams of carb per day, more towards a paleo diet.

Dr Adrian Baranchuk (cardiologist) on lyme carditis

Dr Baranchuk has emphasized that we should be considering lyme carditis in patients with lyme disease. There can be direct invasion of spirochetes into different layers of heart tissue, triggering an inflammatory and autoimmune reaction. The conduction system of the heart is especially susceptible, and there seems to be a 3:1 bias in a male:female ratio.

4-10% of untreated lyme patients will get lyme carditis, while only 1% will get the classic AV block of lyme carditis. However, he notes that these statistics are based on studies where lyme patients were not screened for carditis, but were done on patients who developed symptoms.

Dr Baranchuk has found a higher incidence in patients when they are routinely screened with a 12 lead ECG. Some symptoms of the conduction system being affected can include fainting, dizziness, shortness of breath, palpitations, and chest pain.

He noted that in long term followup, up to 21 months, in patients who were adequately treated, there was no recurrence of lyme carditis except in one patient (who he believes may actually have been reinfected as there was a high IgM antibody titre).

He makes the following points in Lyme carditis and conduction abnormalities:

1. may be early manfestation
2. if younger person has severe conduction abnormalities should consider lyme
3. AV block can progress rapidly
4. early treatment with antibiotics may prevent irreversible conduction disease
5. before pacemaker, await response to antibiotic therapy

Dr Fallon on Neuropsychiatric Symptoms and non-antibiotic treatments

Dr Fallon had a very informative presentation as well, but instead of posting it on this blog page I have made a separate page.