mama2alex

I've never heard of it and my DS has ADHD. What is it?

I see four clinics in S. CA on the list - it may be worth giving one of them a call and exploring. I'm going to try it for myself and if its helpful, take my son. They will test for many different allergies/sensitivities at the first visit, so you know up front what you're dealing with.

You are definitely not at a dead end. First, what lab was used to test for Lyme and coinfections? All the labs can produce false negatives, but Igenex is more reliable than the others that are commonly used. So find out what lab was used and if it wasn't Igenex, you should retest. Even Igenex isn't 100% - my son and I both tested negative repeatedly through Igenex, though he did have one positive Bartonella result in the beginning. The best way to determine Lyme and coinfections is to go to an LLMD. The diagnosis is a combo of labs, comprehensive history, and clinical observation. There is also a culture test that can be done once you've been off antibiotics for 2-3 months. This is what finally confirmed Lyme for both of us. Second, was he tested for viruses including HHV6, Epstein Barr, and CMV? Third, has anyone looked at the possibility of Chronic Inflammatory Response Syndrome (CIRS). This generally refers to mold illness. There are genetic and blood markers that can be checked to determine whether this is an issue for your son. Here's a list of certified practitioners from Dr. Shoemaker's website: http://www.survivingmold.com/shoemaker-protocol/Certified-Physicians-Shoemaker-Protocol There's one in New Jersey.

Thanks for all the info and updates. So happy for you! I found a list of clinics (by state) that provide this treatment, in case anyone is interested. Looks like it's available in 41 states. http://allergytx.com/locations.html

What was your reaction to the Docycyclene? I ask because it's possible it was a herxheimer reaction rather than a bad reaction to the medicine. The Lyme tests a regular doctor will use are highly unreliable, and given the air hunger, Lyme and coinfections - especially Babesia and Bartonella - are worth a second look with better tests (Igenex). Muscle trembling can be caused by Lyme, air hunger by Babesia, and OCD/obsessive thoughts by Bartonella. Your best bet to figure this out is a Lyme-literate MD.

I PM'd you. Did you see it?

Bigmighty and HopeinHIM, I have never heard of needing to keep abx and antifungals separate, or even Alinia and Nystatin specifically. My son has taken Nystatin at the same time as a variety of abx, and I'm on Nystatin and Alinia right now. Did your doctors give you a reason? I'm very curious.

PM'd you!

For very sensitive people whose immune systems are involved, mold is not just a matter of whether you are living in a moldy home at the moment - it's a toxic buildup in the system that can cause things to go haywire and needs to be treated. An air filter or other "product" isn't the answer. Dr Shoemaker developed a treatment protocol, so his website Survivingmold.com can be a great resource. You can also find a doctor who knows what blood tests to do through this website. You can start investigating this possibility right away by doing an ERMI test on your home - you order the test kit from Mycometrics, and just vacuum up some dust and send it to them. If you did some test other than ERMI on your first home, (like air testing) I wouldn't rely on that. I can help you read the test results when they come back - just PM me. My doc gave me a "key" to interpret the raw numbers. Here's a good article to start understanding the whole mold toxicity/CIRS thing: https://chriskresser.com/5-things-you-should-know-about-toxic-mold-illness/

Don't forget diet! If possible, reduce or eliminate sugar and carb intake. Candida thrives on sugar.

Also, I can't open the links. Is there a website or some other info you can share?

Wow! That's great news!! Do you need to be toward the end of other treatments, or can it be effective at any point in treatment?

When some symptoms aren't resolving, I think it's always a good idea to look into common root causes that you haven't previously investigated. You know best what those are, but I didn't see any mention of mold - which is more common than people realize - methylation, or viruses.

Great eight-minute video of Dr. Stephanie Seneff of MIT discussing the connections between autism, vaccines, GMO's, pestisides, glutamate, sleep disorders, Tylenol, brain swelling, blood/brain barrier, etc. Very relevant to PANDAS/PANS as well. https://www.youtube.com/watch?v=o3P6wVUH0pc&feature=youtu.be

My son and I tested negative on Igenex repeatedly over the years. He had a couple of Ind bands here and there, but I had no response. We both tested positive on the Advanced Labs culture three years ago. He also tested pos for Bartonella via Igenex seven years ago, which gave us our first clue we were dealing with Lyme & co.

Dr. T is not a Lyme specialist and uses the CDC/Infectious Disease Society of America testing and diagnostic guidelines, which miss many, possibly most, cases of a Lyme and coinfections. It looks like he didn't even look for coinfections, which is a big mistake. Bartonella and Babesia can cause a lot of PANDAS-like symptoms. If your child has Lyme and coinfections, Augmentin, Clindamycin and Rifampin could all cause a herxheimer reaction, which is is basically a worsening of symptoms due to rapid die-off of the bugs that overwhelms the body's detox systems. Also, if your child has chronic infections, prednisone suppresses the immune system, which could also cause symptoms to increase. Your best bet to determine if Lyme and co is part of the picture is to see an integrative LLMD who will test through Igenex for Lyme, but will also test for coinfections such as Bartonella, Babesia, Erlichia, etc. They will also know how to make a clinical diagnosis taking tests into account but not relying on them 100%. Also, they'll know how to support the body with supplements and herbals to minimize the herxheimer reaction.

For anyone looking into mold illness, I just came across a paper written by an integrative doctor in Park Ridge, IL. It's completely based on Dr. Ritchie Shoemaker's work, but it's the most clear and concise explanation of the diagnosis and treatment of mold illness I've ever read. http://www.survivingmold.com/docs/Berndtson_essay_2_CIRS.pdf

Here's some great info on testing and diagnosis from ILADS: http://www.ilads.org/lyme/about-lyme.php Also, here's a questionnaire developed by Dr. Richard Horowitz, a well respected LLMD, which can help determine whether a person might be dealing with Lyme. You might see if you can get her to fill it out. http://www.cangetbetter.com/symptom-list

Here are some tests that your pediatrician can probably run, so you have the results ready for your specialist appointment: For strep - ASO and Anti-Dnase B Immune function - IgA, IgM, IgG subclasses 1-4 Epstein Barr - LabCorp For mold - MMP9, Human Trans Growth Factor Beta 1 (TGF-B1), Melanocyte Stimulating Hormone (MSH), Vascular Endothelial Growth Factor (VEGF) - LabCorp can do these C4A - Quest can do this Human Herpes Virus (HHV6) IgM and IgG - LabCorp Lyme and coinfection - Igenex Lyme and coinfection panels - for this one, you can call Igenex (or just stop by the lab since you're in the Bay Area) and ask them which tests to start with - they can give you (or send you) the kits and you can take these to your pediatrician and ask him to sign off. Mold in your home - you don't need a doctor for this one - just call Mycometrics (phone # is on their website) and order an ERMI kit to run the test on your home - you'll need help interpreting it though Methylation - you can order the 23&Me test and do it yourself, but you will probably need a specialist to help you interpret and determine what supplements are needed. I've found a PAMF doctor who can do this, but she's in the concierge practice and that costs $300 per month just to be a member. Let me know if you want her name.

Is her doctor monitoring her liver with periodic blood tests? What other treatments are they doing for her PANDAS?

Hi, I don't have any info for you, but I know there are a few families from Europe who've posted here in the past. Two ways to connect with them: 1) Do searches of this forum on words like Europe, UK, etc, and then PM those who are anywhere near you, and 2) start a new thread with a title that mentions where you are, and hopefully someone from your area of the world will respond.

A trial of a gluten-free, dairy-free, soy-free diet for both kids would probably be well worth it. Give it 6 weeks before re-exposing them to foods one at a time to see if they react.

All of their symptoms sound very much like Lyme. I know you had them both tested through Igenex, but I'm wondering if they had any IND or + bands on their results - even if the overall finding was negative. I ask because my son and I repeatedly tested negative on Igenex, though he had a couple of Lyme-specific IND bands here and there. I had no +'s or IND's except 41. We finally both tested positive on the culture test in 2013. The western blots - even Igenex - do not test for all the possible strains of Borrelia and are not 100% accurate. It may be worth revisiting Lyme with an LLMD, but obviously you know your situation best.

Here's a link to the lab tests recommended by Dr. Ritchie Shoemaker. I'd encourage you to read other sections of his website to learn more. Our doctor originally did the HLA-DR genetic test, and when it showed that I was mold susceptible and my son was multi-susceptible, he ran the MSH, TGF-beta 1, C4A, MMP-9, Visual Contrast Sensitivity (VCS), and maybe a couple of others - they were all abnormal, with our C4A's being sky high. He also had us do an ERMI test on our home and that was high. http://www.survivingmold.com/diagnosis/lab-tests

Hi, we are one of the families in N. California who has been dealing with PANS and Lyme. As it turned out, I have Lyme too and most likely gave it to my son during pregnancy/birth. We also both have "co-infections" of Lyme, including Bartonella and Babesia. LLM explained the relationship between PANS and Lyme better than I ever could. Our focus, once we learned about Lyme and co-infections, has been to treat the infections while simultaneously supporting the immune system and detoxing. Mold exposure has repeatedly thrown a wrench in our progress, so it has been a long road for us. We have a wonderful LLMD on the SF Peninsula, so I will PM you his name. We recently switched doctors after working for a few years with a doctor who specialized in mold, but also treats Lyme. We're now working with a doctor who is more of a Lyme specialist, but he has definitely worked with a number of PANS kids and understands the relationship.