I’m going to start out this interview by disclosing to readers my own story. I’m both the mother of your patient and your interviewer. You have been treating my own eight year old son, who has autism and Lyme and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep), for over a year now. I had been doing autism biomed interventions with him for five years, before learning he had chronic Lyme disease. During that time I tried many supplements that helped, but he would eventually peter out.
For example, when he was a toddler diagnosed with mitochondrial dysfunction, the mito cocktail increased his energy, responsiveness and activity level for a few months. But he became lethargic again; and although he still did better with the mito cocktail than without it, it no longer helped to the same extent it did at first.
Often the same supplement that helped also hurt. Playing around with palliatives often felt like a game of Whac-A-Mole. For instance, high dose fish oil and vitamin E, which is a popular protocol for apraxia of speech, gave him the newfound ability to climb ladders on the playground and improved his imitation skills. But it also caused him, for some reason, to become very easily overwhelmed emotionally, to the point that he could no longer solve the tiniest problem or deal with the slightest frustration.
Just before we moved to Alaska, my son’s Igenex Western Blot test for Lyme came back positive. Once in Alaska, I tried to tackle Lyme. An Anchorage naturopath told me at our first appointment that he didn’t really think there was enough hard evidence that herbal Lyme protocols work. He wanted to work with a practitioner who was licensed to prescribe antibiotics to children. This promised arrangement never materialized. Eventually I sought an LLMD (Lyme Literate Medical Doctor), but the only LLMD in Alaska doesn’t treat children. She referred me to you, saying you treat kids with autism and Lyme, using a method of your own. I found your book, Thinking Outside the Pill Box, and I could tell from reading it that you are an evidence-based and honest doctor. So I decided to give the Lyme LDI (Low Dose Immunotherapy) a therapeutic trial.
I have not regretted that decision. My son’s progress has not been a miracle cure, and it has also not been a downhill coast. He may be a tougher case than many kids, because he was not a kid who developed normally and then regressed later. He just never developed good communication skills, and his Lyme symptoms go back to his infancy. He has experienced flares from LDI doses that were too strong. He has also required the separation of the Lyme LDI into its separate constituent borrelia, babesia and bartonella LDI doses to find the optimum strength of each.
But persisting in the patient process of adjusting dose strengths has paid off with steady global improvement. Improvements have manifested in such signs as being able to ride a tricycle for the very first time, being able to put his clothes on for the first time, and many other breakthroughs. In particular I’m excited about him busting out of his long stasis in the set of symptoms that gets labeled “apraxia”. (I’ll define apraxia as Ido Kedar, the Ido in Autismland blogger, does: a mind-motor disconnect.) For years nobody except me has been able to understand my son’s word approximations.
The Lyme LDI – and I think it’s the borrelia LDI part of it in particular –brought him gains in speech sound production that he had not been able to achieve in four years of autism biomedical interventions and speech therapy. After approximately a year of Lyme LDI treatment, my son became able to phonetically pronounce every vowel and consonant. Before beginning Lyme LDI treatment, he could only pronounce about half of them. He has just begun to say new combinations of consonants and vowels that he could never say before, such as the “st” sound. I’m also observing him spontaneously become able, as a splinter skill, to say whole words that are understandable. He used to say his placeholder sound, “nnn”, for “left” and not even attempt to approximate it. Now he says, “leh”. He can also be taught to say better approximations very easily, such as imitating “wa…ta” instead of saying “wawa”.
My FaceBook friends and acquaintances, many of whom are mothers of children with autism and Lyme and PANDAS, often ask me questions about LDI. This gave me the idea to interview you. I know you have a very busy practice that has “gone viral”. Not only that, but you are the father of six children. Thank you for taking the time to respond to a few of our questions via email. I’m going to ask you the questions that I have been asked by parents of children who have autism, Lyme, PANDAS and PANS.
Jennifer Elrod: How did you get started working with kids with autism and PANDAS? Were you a DAN doctor before you used LDA or LDI with your patients with autism? What improvements did it bring to your treatment of your autistic patients once you started treating them with LDA and LDI?
Dr. Ty Vincent: I did join the DAN organization (now morphed into the MAPS group and still associated with the Autism Research Institute I believe) around 2009 I believe, and went to conferences for a few years. I started doing LDA (just the allergy portion) in 2008; and I found that many on the autism spectrum would see some improvement simply by treating their food and environmental allergies. As I learned more and experimented more with using other types of antigens (the LDI techniques I developed, starting in 2009-2010) I found more and more relevant antigens in autism. The more relevant antigens I’ve discovered, the more individuals we have been able to help more completely. Autism represents a very complex immunological mess, with numerous triggers being targeted by an extremely confused and distressed immune system. Myself and some colleagues (most notably Dr. Karima Hirani, in California) are seeing more and more success using LDI in autism and related disorders.
Elrod: Briefly describe LDI for unfamiliar readers.
Dr. Vincent: Low dose immunotherapy is a way of restoring immune tolerance for one or many different antigens, by retraining the immune system using very low dose exposure. You must determine both the proper antigen target, and the optimal dilution/dose of that antigen for every given individual. Thousands or even millions of antigens can be given all at once, even when the vast majority of them are not relevant to the patient.
Elrod: How do LDA and LDI differ from homeopathy?
Dr. Vincent: Not much. The mechanism underlying LDI must be via vibrational resonance frequencies, similar to the way homeopathic remedies work. The main differences are the dosing schedule we find works with LDI (every 7 weeks rather than daily or multiple times per day), and the use of large numbers of antigens simultaneously. The harmonic signal seems to be mediated through the immune system to promote tolerance with LDI. Homeopathic remedies don't necessarily involve an immune system response. But, the exact mechanisms of both LDI and traditional homeopathy are really not well understood.
Elrod: Can antibiotics be taken in conjunction with LDI?
Dr. Vincent: Yes, but it is really not preferred when treating with a bacterial antigen. Suppressing the bacterial load in the body with antibiotics alters the LDI dose that will work; and then that same dose often induces a flare response when the patient stops taking antibiotics later on. It’s much better to find the proper LDI dose without antibiotics on board, matching the normal bacterial load for the patient. We do leave them on antibiotics initially, when the use of antibiotics has provided significant symptomatic relief. Then we expect to make the LDI dose somewhat weaker later on, after stopping the antibiotics (presuming they respond properly to the LDI and have better clinical relief).
Elrod: What are your thoughts on how to balance treating the immune dysfunction a pathogen causes, versus killing the actual pathogen itself?
Dr. Vincent: Killing the pathogen is usually a pointless endeavor; because the organisms that trigger chronic inflammation are usually not true “pathogens”. They are more like “normal flora” within the human ecosystem. Trying to eradicate them from the body almost never works; which is why patients are treated with antimicrobial agents for years in many cases without success. What truly underlies the disease process is the immune response to these organisms, not the fact that the organism is present within the body. Every normal, healthy human is walking around with trillions of microbes in their body. That does not constitute “infection”, and they should not be treated as an infection by trying to kill the organism (whether that be a bacterium, virus, yeast, parasite). There is a very important distinction between infection and an immune-mediated chronic inflammatory condition that is targeting a microorganism. Pneumonia and UTI are examples of true infection, and both represent bacterial species that are normal within the human body getting into body compartments where they do not belong; then they can be cleared completely from those regions with short courses of antibiotics (3-10 days). Treating Lyme disease with antibiotics for months or years, and still seeing patients relapse after stopping therapy, should prove to anyone with common sense that you are not treating an “infection” in that case. Therefore, attempting to kill the organisms involved in Lyme disease and similar chronic inflammatory syndromes is the wrong approach. Dealing solely with the immune response achieves wellness and internal harmony for the patient without the collateral damage of antibiotic therapy. That includes herbal antimicrobials, not just prescription antibiotics.
Elrod: Of course we know that every kid with autism is different, but do you see any patterns in your clinical data about our patient sub-population?
Dr. Vincent: Complex, multifactorial, neurological inflammation is the convergent problem in autism spectrum disorders. What is different within the population is the particular immune triggers that are relevant to each individual. Common antigens include: foods, food additive chemicals, chemicals, environmental allergens, Strep, Lyme organisms, yeasts (Candida and others), Herpes simplex, other Herpes viruses, Clostridia bacteria and their chemical byproducts (propionic acid derivatives), Mycoplasma, GI parasites and other bacterial flora. It can be a long, challenging process to determine what all the triggers are for a given individual; but it is extremely rewarding to figure it all out. The typical biomedical interventions of diet, nutrition, supplements and supportive therapies are all very important as well. Even if you succeed in putting out the fire in their brain, you then have to retrain the brain to function more normally.
Elrod: Approximately how many patients with autism/PANDAS do you currently treat?
Dr. Vincent: I have no idea. Dozens is the best estimate I can give.
Elrod: Approximately what percentage of your patients with autism have responded to the Lyme LDI?
Dr. Vincent: Probably 60-65%, or about 2/3. But we haven’t worked through all the doses for some yet – I don’t consider it a “failure” until we get to as strong as 5C with the Lyme mix.
Elrod: Describe the most typical Lyme symptoms of your pediatric Lyme patients who also have autism.
Dr. Vincent: “Lyme” in my opinion includes reactivity to Borrelia, Bartonella, Babesia, Ehrlichia, Coxsiella and possibly Anaplasma. Symptoms we see within that cluster can include: lethargy, poor muscle tone, coordination problems, speech delay, visual integration or motor problems, learning problems, irritability and social interaction problems, temper outbursts and poor impulse control, tremors, seizures, stimming behaviors, insomnia, unexplained fevers, hyperacusis (sound sensitivity), light sensitivity, tactile sensory problems, joint or muscle pain, gut inflammation, rashes, dilated blood vessels or little red spots, swollen lymph nodes, and other symptoms.
Elrod: Describe the most typical yeast symptoms of your pediatric autistic patients.
Dr. Vincent: Belly bloating, constipation (some can have diarrhea instead, but that’s far less common), thrush, diaper rash, rashes in the buttock folds, groin or armpits; sugar/starch cravings, fatigue, silliness or inappropriate laughter (especially the kids who wake up laughing in the middle of the night and act like they’re drunk), balance and coordination problems, speech delay and lack of initiative.
Elrod: Could you summarize the most successful Lyme and autism case history in your practice?
Dr. Vincent: 17 year old male with moderate persistent autism features consisting mainly of social interaction issues, social anxiety, OCD tendencies, difficulty breaking routine, poor conversation ability. The Lyme LDI improved all of those things to where he started driving independently, running errands for his mom, and even got himself a job. He began having meaningful abstract discussions with his mother too. These were major changes, and he is now much more likely to live and function independently as an adult.
Elrod: Could you summarize the case history of an average patient with Lyme and autism?
Dr. Vincent: Most have the typical problems with communication, learning and social interaction as well as mild neurological symptoms such as stimming behaviors and sensory integration problems. Many will have gut issues or other allergies. It is most typical to require 3-5 different LDI antigen mixtures to see truly significant improvement across all features.
Elrod: What is an example of a very tough case who has autism?
Dr. Vincent: Our toughest is a 26 year old man who regressed after vaccine reaction in infancy and became not only nonverbal but very violent and inconsolable. He has remained so, to the point that only his mother can care for him, and is herself injured by him at times. He is still nonverbal and cannot do anything for himself besides using the bathroom independently. Marijuana is the only thing that has ever calmed him enough to be more manageable; and none of the LDI antigens we’ve tried thus far have had any notable effect.
Elrod: How many of your patients with Lyme and autism also turn out to have PANDAS?
Dr. Vincent: Maybe 20%, which is a total guess.
Elrod: Describe the most typical symptoms of your PANDAS patients.
Dr. Vincent: Anxiety and OCD features.
Elrod: Could you tell about the most dramatic PANDAS success?
Dr. Vincent: Most will have very significant or complete resolution of the OCD and most of their anxiety with using the standard Strep antigen we get through Dr. Shrader.
Elrod: Could you tell about the toughest PANDAS case?
Dr. Vincent: They aren’t tough. Some are so reactive as to need diluted versions of the Strep antigen, rather than full strength. For the most reactive thus far, we’ve had to dilute the usual antigen mix another 100,000:1, I believe.
Elrod: Have you found the Mycoplasma LDI helpful for PANDAS patients?
Dr. Vincent: No. Mycoplasma has nothing to do with PANDAS, which is defined as reactivity to Strep. But there are similar symptoms in some with Mycoplasma reactivity (irritability, mood swings, resistance to change and some other common autism symptoms).
Elrod: Does the strep LDI lower the ASO and AntiDnase b levels?
Dr. Vincent: I don’t know. I haven’t bothered to retest anyone; seems like a waste of money.
Elrod: Is there such a thing as LDI for helminths?
Dr. Vincent: Sure. You could make an LDI for anything you want. I am not aware of anyone using any helminth antigens yet however.
Elrod: What about LDI for viruses?
Dr. Vincent: Yes, we use a number of viruses for the proper clinical indications. Those we’ve currently used with some success in various clinical settings include, HSV-1 and 2, EBV, and Varicella. We also have HHV-6 and CMV, but haven’t seen them work for anything yet.
Elrod: What about LDI for autoimmune sequalia of vaccine injury?
Dr. Vincent: Most of the time a vaccine is merely the “catalyst” for the development of immune inflammation against some other internal target. The Lyme organisms are common targets that become sensitized following vaccines. Yeasts, viruses, foods and environmental allergens are also common targets for sensitization triggered by vaccines. The vaccines themselves are not typically the ongoing immune targets; and therefore they have not so far proven useful as LDI antigens. I’m sure there are cases where that will prove useful though.
Elrod: How is LDI different than a vaccine?
Dr. Vincent: It causes the total opposite effect. They are only similar in that you are giving someone the very thing that is the target or desired target for immune response. Giving a strong concentration causes an increased immune response, which is vaccination. Giving a very weak concentration (tiny dose or even no measurable antigen at all – just the vibrational signature – as in many LDI doses) causes a decreased immune response. The differences are the dosage/dilution and the resulting immune response change.
Elrod: Some people wonder where LDI and LDA therapy fit into the treatment for MCAS/MCAD (Mast Cell Activation Syndrome/Mast Cell Activation Disorder). What is your opinion?
Dr. Vincent: Mast Cell Activation Syndrome is not a “real” disorder. No more than Fibromyalgia, Irritable Bowel Syndrome, or Autism. Those terms all represent symptom complexes without any description of cause or pathophysiology. Using diagnoses like these distracts people away from trying to figure out the underlying processes and causes. Those who are diagnosed with MCAD/MCAS have acquired so many allergic triggers that their immune system has developed a “hair trigger”, and gets set off with little to no provocation now. The mast cells are only acting on orders from above, and are not themselves dysfunctional. The goal is to stop all the allergic triggers using the relevant antigen mixtures within LDA/LDI; and then the symptoms become controlled. The typical approach of using antihistamines, mast cell stabilizers and other agents to stop the downstream immune responses are merely symptomatic and do nothing to really improve the underlying process or provide long term resolution of the problem. LDA/LDI can essentially stop the problem from closer to the root cause.
Elrod: A few people who have kids diagnosed with MCAD/MCAS wonder if LDI is safe for their kids. Some of them think any kind of immunotherapy is unsuitable for an MCAD patient, whether IVIG, LDI or low dose Naltrexone. Do you have an opinion about this?
Dr. Vincent: That’s totally wrong in my opinion. Loading their kids up with a bunch of symptomatic drugs that do nothing to address the real problem is what isn’t safe.
Elrod: At least one study found that kids with autism have low T cells in general, and another study found they have low T regulatory cell populations. Some people have asked me whether you know if LDI can help a patient who has basic problems in T cell pathways.
Dr. Vincent: Giving them vitamin D in therapeutic doses (1,000iu per 10# body weight, up to 10,000iu daily max) is the best way to boost their T cells, particularly the Treg cells. Controlling the immune activation problems with LDA/LDI should help too – by stopping the “consumption” part of the problem. When something measures low, you really don’t know if that represents a decrease in production or an increase in consumption/excretion, or possibly both.
Elrod: Thanks again for taking the time to answer the questions I’ve received the most often in my online community. My hope is for parents who read this interview to gain more awareness and understanding of LDA/LDI as treatment options. I feel blessed that the Lyme LDI has been available as a choice for my own kid. It has been an affordable, non-invasive and safe treatment. It’s easy to get him to take the nearly tasteless squirt under his tongue. There is no crying. Even on days when he’s being a stinker, he always cooperates with taking his LDA/LDI dose, as if he knows it makes him feel better.
And it has been fascinating for me to keep a log of his responses, as a part of my role in this treatment: my own child’s best observer and reporter. I feel like I’m following a crude approximation of the scientific method, as a citizen scientist for my own little N of one, every round of LDA/LDI. I have learned more than I ever imagined I could know, about which triggers cause which neurological symptoms in my kid. The result has been a growing security and confidence that, if he’s doing well, I know why. It’s not a mysterious weather change that will last for a while and then shift. And that’s a great feeling that I wish as many parents as possible could experience.
Update - I received the below from Jenny Elrod in June 2017:
My son's speech therapist says she can now understand 80-90% of his spontaneous speech during therapy sessions. She is recommending he does not need a speech generating device anymore. She said it is very unusual for a kid his age (9 yo) to be able to learn to speak intelligibly. She said usually if they can't speak intelligibly by age 7-8, they never can.
I don't think he ever would have, if not for treating his chronic auto-immune Lyme disease. Among other symptoms, Lyme was causing dysarthria, or facial muscle weakness. It was especially pronounced on the left side. He was able to hold a bite block on the right side of his mouth for 6-7 seconds at first, quickly working up to 10 seconds. He could not hold it longer than 2-3 seconds on the left side, when he was due for a Lyme LDI dose. Immediately after a Lyme LDI dose, he was able to hold a bite block on the left side for 6-7 seconds. His ST had no idea of his Lyme LDI dosing schedule.
It was also important for a qualified ST to look inside his mouth and rule out anything structural. She looked on her own and made some tentative assessments. To confirm what she suspected, not only did she send us to an orthodontist, but also to an ENT specialist.
An RPE (rapid palatal expander) turned to be critical for a subset of consonants -- those that require the middle of the tongue to touch the roof of the mouth. The RPE widened the roof of his mouth, bringing the top down, so it was easier for his tongue to reach it. This affected the K and G consonant sounds. He had been substituting D for G and T for K sounds.
It took two years of Lyme treatment before he was able to say all of his consonant sounds. He was even able to say the G and K sounds, but not consistently, only in some words and only occasionally in isolation. Then it took a year of ST to get him to be able to speak intelligibly to most listeners.
It was after the RPE was in his mouth for 3 months that he got up to 50% consistency on his G and K sounds in words. Then it took a couple months to reach 80% consistency and become self-correcting outside of ST sessions.
It was also necessary to get him to slow down his speech. When he spoke too fast, he dropped more consonants and slurred more words. The longer a sentence was, the faster he talked, and the more his speech slurred. The Feingold diet helped him to slow down his speech automatically on his own outside of ST sessions. Before Feingold, in ST sessions he would slow down when prompted but only for 3 word sentences -- not longer sentences yet.
I think he still would have been okay even if not learning to speak intelligibly. He would have used his speech generating device, or if not able to do that yet, he would have used a letterboard as in RPM. Many teens with autism don't speak but are attending college after RPM therapy.
But it's important to rule out possible things that could be corrected to allow for speech acquisition, even in kids who are older than 7 years of age. Lyme disease is one of those things, and the Lyme LDI is one possible treatment.
Jennifer Elrod lives in the Anchorage, Alaska area, where she is a full-time mother and a part-time freelance writer.
Editor's Note: I am honored to share this article from Jennifer on the topic of LDI. It is one of the emerging therapies that I have personally been using and am very excited about. I thank Jennifer for sharing her experience and the interview above with all of us.
Note: This article has been published with the direct permission of Jennifer Elrod. Permission was also secured from Dr. Ty Vincent by Jennifer Elrod. No permission is granted for copying this article elsewhere unless granted by Jennifer Elrod. Sharing a link to this article is, of course, not a problem.