Dr. O’Hara and Vicki Kobliner held a Question & Answer zoom meeting for topics including COVID-19, Lyme, PANS PANDAS
ASPIRE thanks the NECH team for continuing to host talks and having ASPIRE write notes to share with the community. Patients of Dr. O’Hara and Dr. Wells can ask additional questions in the patient portal. Please check back for the upcoming schedule as well as Q&As and transcripts of previous meetings. NECH Educational Sessions. Patients with additional questions can message Dr. Wells, Vicki Kobliner, and Dr. O’Hara in the portal.
Q: What kind of follow up should we request for primary care doctor if we suspect mild multi-system inflammatory syndrome?
A-Dr. O’Hara: The mild cases are really just like the COVID toes, or some kind of rash. We’ve gotten several pictures of COVID toes so far. I do recommend you taking a picture of it and sending it to your primary. If it is just mild, there is not a need to reach out meaning, if your child does not have a high fever, is not showing any symptoms of lethargy, discoloration of fingers or toes, or any of the symptoms we listed during our talk on MIS-C. http://aspire.care/featured/multi-system-inflammatory-syndrome-with-covid/
If your child has had COVID-19 symptoms (http://aspire.care/featured/covid-19-qa-with-dr-nancy-ohara) and they have been resolved for more than a few days, I would contact your pediatrician about COVID-19 antibody tests (http://aspire.care/featured/covid-19-antibody-testing). We have found Diagnostic Solutions to be 100% accurate so far. We had a few false negatives from the Boston Heart test from people we know had corona.
Q: My child is an only child and we have been very strict in terms of distancing but now we want to consider letting him play with other children. What is your opinion of controlled playtime and attending camps?
A-Dr. O’Hara: I think the first thing in regards to seeing friends is asking how safe have they been. Will I have my friends that I feel safe with over for a party? No. But I will go on walks on the beach with them. Playing outside with families you trust is fine. With regards to camps, that is going to depend on the camp. Some camps are not opening as they do not feel they can provide a safe environment while providing all the activities they usually do. For example one patient was looking into a hockey camp but they were going to let all the kids in a locker room and they were not going to take any extra precautions, so in that case, that is a camp I probably would not recommend right now. We need to be with our pets and we need to be in the dirt. We need to be outside. Otherwise, we increase the risk to our immune systems if we make things too sterile.
A-Vicki Kobliner: I know a lot of people who have not been as safe as I would like so I would not be inclined to let my children hang out with them. As far as outdoor activities, I think it is important to look at how much exertion that activity takes. The more exertion, the more droplets, the more exposure you are going to have. Tennis is a great activity or throwing a ball. We do have to start leaving our homes. We do have to get the opportunity to build our own immunities. We want to be cautious but if we keep people separate, don’t do activities that will make you breathe heavily In close proximity, wash up and use foundational immune support it is probably a good time to let kids see each other again.
Q: What about masks? Should we consider homeschooling if our kids can’t wear masks?
A-Dr. O’Hara: A lot of the kids we see can’t handle wearing them. In our office, we are not expecting them to. This will be a problem when school opens back up. I think it is too early to answer questions about school. We need more information about risk rates when school starts.
Q: What about COVID-19 antibody testing.
A-Dr. O’Hara: You can refer to our talk on COVID-19 antibody testing. I will reiterate, that testing is not a free pass to go do whatever you want. If you had an illness earlier than March or even in March or April that you’re not sure if it was COVID or not and you want to know, that is a good reason to do the antibody testing. Another reason to test is if you know you had COVID and you want to see if you built up antibodies perhaps to give your plasma, as plasma from people that have had COVID has been helpful in treating patients that currently have it. Also, we have had parents who have had to continue to work or are about to go back to work and they just want to know.
Not all antibody tests are reliable; there are many that are not good. And even a 95 -96% accuracy is not enough for many of these tests because we’re talking about a prevalence of the disease that maybe 2-3%. If the prevalence of the disease is 20% and a lot of people out there are asymptomatic carriers, then 95-96% sensitivity and specificity are okay. But if it’s a 2-3% prevalence for this disease, then you’re going to miss a large percentage when you’re only getting 95% sensitivity, meaning there’s 5% false negatives or 96% specificity, meaning there is 4% false positives. So we have had some false negatives.
We are using two tests on people that could afford it so we can continue to do our own internal vetting. We may be changing those tests over time. But those are the reasons that we would get the testing. There may be some protection by having immunity but again, we don’t know enough yet whether the virus will mutate or how long the immunity will last. It could be months, it could be years. We don’t know yet. Most likely it will be a year or less that immunity would last.
Q: What are your thoughts on a vaccine?
A-Dr. O’Hara: I really don’t want to get into that yet. I think that the idea that we’re going to have it before the end of 2020 is probably not substantiated. I also want to remind you this is a Coronavirus, which means it’s in the family of the cold virus. We have not yet been able to develop a vaccine for any cold or Coronavirus. I will withhold my recommendations on that. There is a new article out today, also, that I welcome you to read, Analysis of health outcomes in vaccinated and unvaccinated children: Developmental delays, asthma, ear infections, and gastrointestinal disorders. (https://doi.org/10.1177/2050312120925344)
Q: MTHFR A1298 and B12 and folate – Do you recommend that PANDAS kids take B12 and Folate?
A-Vicki Kobliner: A1298 is one of the SNPs and then there’s another one called C677. A1298 is actually less linked to problems with methyl folate and B12 processing. The double mutation for C677T is the one that is generally more improved with folate support. Whereas, A1298 has more to do with things like catechol-O-methyltransferase and B6 and BH4.
Q: What are your views on private boarding schools in New York as well as colleges?
A-Dr. O’Hara: What you need to know is, are the schools thinking about it thoughtfully? What is their plan? Are they having box lunches? Are they having more spread out classes? Are they having modules or do they have a separate area where kids who may be exposed or may test positive can go? Do they have good health services and also social services in place? Are they going to be taking temperatures? Might they provide additional support for older professors? You know, I think our teenagers, and young adults, the ones who might be attending boarding schools and colleges, unless they have pre-existing conditions, are safer than others.
A-Vicki Kobliner: We spend a lot of time in these conversations talking about not getting infected or what to do if we’re infected or how to protect ourselves from infection and how to protect our kids. But the thing that I don’t think we talk about enough is the mental health impact of what we have all experienced. I work with a lot of therapists and I am affiliated with a therapy group and the onslaught of mental health issues that they’re seeing is pretty profound.
I’m also worried about what’s going to happen when we put a bunch of college-age kids on campus when their emotions and their anxiety and their depression is activated. I think we have to be extremely cognizant with our children who even if they can’t express it are feeling the anxiety, feeling the tension, and feeling the changes. Make sure that we’re providing them ample emotional support when wanted or needed.
Q: What about COVID-19 and pregnancy?
A-Vicki Kobliner: I’ve been doing a lot of research on pregnancy and COVID. Because I’m concerned this is a viral infection that women are getting when they’re pregnant. And women are not being allowed to breastfeed their kids because they’re worried about passing the virus to them. So if you know anybody that’s pregnant or is wanting to become pregnant, please let them know I am available. Pregnancy in the time of COVID has to be addressed a little bit differently and I believe we should all do preconception and pregnancy counseling anyway. There’s a new study out there showing that we think COVID can affect the placenta. So it’s something that I’m concerned about. If you know people who are pregnant, it would be something to talk to them about. We want to be proactive about this.
A-Dr. O’Hara: I am giving a lecture at IFM on the first thousand days. The first thousand days doesn’t start when your baby’s born. It starts at conception, and it’s really a very important point. We welcome more consultation about these issues and hopefully preventing later neurodevelopmental problems.
Q: I want to start SPM Active, Chinese skullcap, NAC, quercetin, Japanese knotweed. But I’m scared to start before my PANDAS son has his first appointment.
A-Vicki Kobliner: Yes, with regard to COVID-19, we need to understand more, though the evidence is emerging, we don’t have a lot of data that really, really supports direct use of some of these herbs or some of these supplements for COVID directly. For some of them, we are getting more and more information. (Dr. Wells’ talk on COVID-19 Melatonin, Quercetin, Vitamin C. and Dr. Wells’ talk on COVID-19 & Zinc)
First, as a practice, we don’t recommend starting lots of things all at once. To start all of those at once may not be ideal. I tend to target the ones we know the most about and that have the best risk-benefit ratio. Something like quercetin can be extremely helpful for many things. One of the things quercetin is going to do aside from helping with inflammation, is through the zinc ionophores it helps zinc get into the body. For a child who has PANDAS, reducing inflammation overall can be something that is very helpful. I think the same is true for SPM active. It is used for kids with PANS/PANDAS. There is some information that SPM may be helpful for COVID so using something like that can be specifically helpful and there is a very low risk with it. The question is what are you worried about? If you are worried about an adverse effect, there is very little that would be negative about SPM or quercetin. But make sure you do them one at a time, don’t start a whole bunch of things at once.
Q: Chronic Lyme – Can you talk about some of the interventions?
A-Dr. O’Hara: For those of you who do not know, Vicki has worked a lot with some of the herbal Lyme protocols for patients with chronic Lyme, particularly the Cowden protocol.
A-Vicki Kobliner: When we use antibiotics, whether a short or more lengthy course, we are doing something we know we don’t want to be doing to the gut. Antibiotics can induce some the Lyme spirochetes and co-infections to go into hiding. So when you give antibiotics, you kind of clear the top layer. It’s kind of like the Titanic. Think about the iceberg. You know, the antibiotics may get rid of the top of the iceberg, but what’s below the surface is not always completely addressed. Getting to what lies below the surface requires generally a combination of three things: higher dosing, much longer term therapy, and an Increased combination of interventions. Some people use triple antibiotics, but we can use herbs as well. What you want to do though, is make sure that you’re doing it long enough. For somebody who has had Lyme for 10 years, we are looking at probably years of therapy to get to the root of what’s happening. Also, to really address the underlying co-infections, that may be housed in biofilms, which are like blankets that germs will hide inside, like bomb shelters, we need comprehensive interventions. When there are bombs in the area we go into a bomb shelter and to wait till the bombing stops, then we’re going to creep back out again. So that’s what a lot of these infections do.
A really good intervention for Lyme is going to be one where you continue to bomb, then you allow short breaks so that the germs can reemerge from their bomb shelters, then you bomb them again, and you continue to do that. Then you let them emerge, and then you bomb again. And you continue to do that with a variety of different herbals. So that you don’t have resistance, you cover all the bases of the different germs that might be existing there. And you also continue to allow them to reemerge when they go into hiding. And that’s what a lot of short-term Lyme protocols don’t do. These treatments are long; you have to assume it’s going to be six months to 12 months, probably possibly 18 months or more, depending on the seriousness of each person’s infection. But yes, there are good protocols that can address it, but they are long term and you don’t get immediate results.
A-Dr. O’Hara: And a follow up to that was about research about bleeding abnormalities involved with Lyme diagnoses. Like we talked about with the multi system inflammatory syndrome post COVID, with Lyme disease, we have to think about it as a multi-system disease. Keeping that in mind, the other potential benefit of the herbs is that there are anti-inflammatory properties, within the protocols there are detoxifying properties. You also have to have mineral and mitochondrial support. It is not just about treating the infection. It is a multi-system disease, and this, it has to be a multi system treatment. In some rare cases, there can indeed be bleeding tendencies with Lyme disease, either clotting or excess bleeding.
Vicki Kobliner, MS, RDN, of Holcare Nutrition provides functional nutrition services for children and adults seeking an integrative approach to health.
Nancy O’Hara, MD, MPH, FAAP, a member of the ASPIRE Professional Advisory Board, is a board-certified Pediatrician. Prior to her medical career, she taught children with autism. Dr. O’ Hara entered general private practice in 1993, and in 1998 began her consultative, integrative practice solely for children with special needs. Since 1999 she has dedicated her practice to the integrative and holistic care of children with neurodevelopment disorders, ADHD, PANDAS/PANS, OCD, Lyme and Autistic Spectrum Disorder. She is a leader in the training of clinicians, both in the US and abroad. Dr. O’Hara’s Website & Full Bio