mama2alex

This topic was just discussed on one of my Yahoo groups yesterday. One mom was able to resolve her daughter's long standing stomach pain with an anti-candida diet. Food allergies were also discussed, with dairy and gluten as the most common offenders. If their daughter is willing to eliminate some foods for a while, this could be something to try.

Strep is not the only infection that can cause PANDAS/PANS. Many of these kids have multiple chronic infections due to issues with the immune system. Lyme and coinfections are common, as well as various chronic viruses and candida (systemic yeast). A Lyme-literate doctor will test for all of these, as well as strep, so that can be a good starting point. Most of them have now seen multiple cases of PADAS/PANS and will know more about how to look for hidden strep infection than the average doctor. Light and sound sensitivity are classic Lyme/coinfection symptoms, as are brain fog and anxiety, so I would explore that as soon as possible. Also, if your son has food sensitivities, consider cutting out any foods with added preservatives, dyes, and MSG. Limiting sugar to as little as possible can also be very helpful.

Our doctor has put my son on a gluten-free diet as part of the Shoemaker protocol for treating mold toxicity. Five weeks in, I've come to realize that he's not sticking to the diet whenever he's out with friends. Every time I catch him, he promises he'll stick to it moving forward, but its not happening. I've given him good food that he likes, including spending a lot on sushi for lunch occasionally, going to the GF bakery for sandwiches, but this hasn't been enough. He's a kid who definitely has food addictions (sugar/carbs) and who resists change or doing anything uncomfortable unless he understands WHY he has to do it, but so far I haven't found much to help me explain it to him in a way he can understand. He's 15, but probably has the maturity of a 13-year-old. Has anyone been through this and know of some good online resources and/or books, articles that might help us? I think even a picture book explaining what gluten can do to the body would be helpful. Any help would be appreciated - I'm stuck between the doctor who says we "have to" and the teen who won't!

Bella, What lab did you use to test for Lyme? Did they test for coinfections such as Bartonella, Babesia, Erlichia, and Anaplasma? Lyme tests are notorious for false negatives, and so they can be misleading. If they ran an Elisa or a Western Blot through a lab other than Igenex, I would re-run the testing using Igenex and include coinfection testing. We treated our ds with Valtrex for viruses for a long time (over a year) and then moved to herbals. Our doctor has recommended a low-sugar diet to keep viruses at bay. Antifungals should be used in tandem with probiotics and a low-sugar diet. They've been helpful for us, but the viruses are tough. Hope this is helpful! I'm sure others will chime in.

Glad to read such positive news! How's he doing? Still improving I hope?

We did urine testing through Neuroscience, Inc. Our integrative doc interpreted the results and recommended supplements. Glad you've found something that helps, at least in part! I know it's been a long road for you and your daughter.

Is $1,000 the cost of the appointment only, or does it include the lab work? Because $1,000 sounds awfully steep for an office visit, even the initial appointment, and we live in the SF Bay Area (one of the highest cost-of-living areas in the US). I think we paid about half that for our initial appointment. Just wondering if there's a way to see someone else who charges less.

We saw improvement for 7 weeks, begining about 6 weeks post high-dose IVIG, but the gains vanished with the first virus he caught. We started seeing gradual, but sustained gains after we started to treat for Lyme and co-infections 15 months after initial sudden onset of PANDAS/PANS. We first saw noticeable improvement in OCD and anxiety after his first 6 weeks of treatment, on Alinia and Rifampin. For the most part it was extremely slow and gradual improvement over years, with two exceptions. We saw big gains after we'd treated him for mold for a few months (and moved out of our moldy house). We also made huge progress on school anxiety/refusal after 3 weeks of intensive therapy at Rothman in Florida (3 years after starting Lyme tx). He recently went off abx after 5 years of treatment for Lyme, mold, viruses, methylation, parasites, etc. He is still taking a number of herbals as well as all of his supplements. So it's been a long haul and we've addressed many issues in many ways, but he's doing great and does not have flares with illness. If Lyme, etc treatment isn't working, I would look into methylation and mold toxicity. Mold is often overlooked and for us was a big contributor to anxiety and OCD.

I found out a few years ago this is called a paradoxical reaction. My ds had it with Benadryl - it made him angry and aggressive. He also had one with Wellbutrin. It doesn't seem to be uncommon with these PANDAS/PANS kids. Have you tried CBD oil? A local practitioner who works with many Lyme patients said that CBD seems to be most effective for kids on the spectrum (from what he's observed in his clients). Also, have you ruled out mold exposure? I think this is more common that people realize, and it can prevent full recovery from Lyme. Mold turned out to be a big part of my son's anxiety.

I had a rash all over my torso. I think it's just one of the many many possible presentations of Lyme and coinfections. Band 39 is specific for Borrelia Burgdorfori.

With Lyme, the devil's in the details. Here are some additional things to consider with regard to the Lyme: - Did the doc test for co-infections? - Did they look for other issues that often accompany Lyme and can cause neuro symptoms - chronic viruses, mold, methylation, vitamin deficiencies, heavy metals? - What was the treatment? What antibiotics, supplements? - how long did they treat? How did they determine the Lyme (and coinfections) we're completely gone? I'm posing these questions because the idea of treating Lyme for a few months and then stopping when your dd is still symptomatic sends up all kinds of red flags. My son has needed 5 years of rotating abx and other medications for Lyme and co. We stop abx in a month, but even then he'll still be treated with herbals and supps for a time. I'm wondering if you are truly finished with the Lyme. PANDAS and Lyme/coinfection symptoms overlap A LOT, and most kids need to be treated for years.

Hi sarojane, I'm really sorry to hear that your friends haven't stuck by you through this. I think many people see this as mental illness no matter how much you explain it to them, and it scares them. It's just ignorance and not a reflection on you at all. It can be really helpful to try to connect with other PANDAS/PANS (and Lyme, if that's the case) parents in your area. When I talk to friends who've also dealt with this, I don't have to worry about what I say or how they will judge us. I can be totally open and supported, and that has really saved me. Hang in there and keep asking for help and support when you need it.

Fantastic news! So happy for you and your family! Thanks for the detailed post and food for thought. Mine is just starting high school, but always have my eye on the next steps.

We were in a similar place two years ago. He was doing much better, and lots of issues had melted away, but the school anxiety/refusal just wouldn't budge. We took him to Rothman for 3 weeks of intensive therapy and we saw an amazing turnaround. There were still bumps but we'd learned tools to help him through those. Now he's in 9th grade, back in public school (charter) for the first time since 3rd grade and he's gone every day for the first month with no problems. This long story is to say that sometimes these things become habits and they need therapy to break those habits. That's not to minimize the role of the infections or the power of medical treatments, but with the brain it can be complicated. That said, I also agree with Rowingmom. If you haven't tested for coinfections that needs to be done. Also, mold can get in the way too. That was definitely one cause of anxiety for my son.

Just to offer a little more detail - this was a community meeting in Oakland to discuss implementation of SB277, the recently passed law that forces CA parents to fully vaccinate their kids or pull them out of school. The black community is waking up and seriously considering whether they should even comply with this law. The parents and community leaders who spoke were very well informed, passionate and eloquent. They had one rep from the department of health robotically repeating the party line, and it's pretty entertaining to watch how uncomfortable she gets when parents start contradicting her and backing it up with facts and stats. Thanks for posting eamom. I agree - everyone should watch this!

Our ds had debilitating anxiety in the beginning. He only made it to school about half the time that year (3rd grade). He had to be in the same room with me all the time - including the bathroom. He believed there was a robber in our house 24/7. The only thing that helped was treating for Lyme and co-infections, and this was a very slow, but steady improvement over the last 5 years. He is now nearly anxiety-free and going to school with no problems. Belly bloat can be caused by yeast/Candida. You should have her tested. She may need medicine in addition to avoiding sugar (which feeds yeast). The sugar craving is also a symptom of yeast overgrowth.

Great, great article! And timely, since we are having a heck of a time getting rid of Bartonella.

Well, this board - just a separate post with a title that reflects what you're looking for...

Hi Seamom, I just read your post from a while back saying that your son developed PANDAS/PANS after his HPV vaccines. Given that his immune system had a bad reaction to a vaccine, it follows that really anything could trigger it, not just a particular strain of strep. I'd urge you to talk to an integrative or functional medicine doctor. They look for root causes of illness and can treat immune system dysfunction. Given the vaccine reactions, I just don't know that abx will be enough.

Mom2amaz2boys, You should create a separate post asking for doctor recommendations in NJ. Otherwise most don't know you're asking for this. Also, I believe LLM has a good one in that area, so you could PM her. As for an immunologist, I would wait until you've seen the Lyme doctor and see what comes of that. Lyme doctors see immune issues all the time - that's the nature of the illness.

I'm sorry you're feeling lost and confused - I think that's how all of us felt at the beginning of this, so know that you're not alone or different. As you learn more, get more information and see some progress, you'll start to feel more in control. I think it was misleading of Dr. T to tell you your son's immune system is functioning well. If he has PANDAS/PANS and specific antibody deficiency, then by definition his immune system is not functioning normally. Many things can contribute to this, including any number of chronic infections. But there can also be vitamin/mineral deficiencies, food allergies, methylation issues, heavy metal toxicity, and mold toxicity. We've had to address all of the above to get our son better. If a neurologist ran a Lyme test, he/she most likely did not run the best lab test (they are generally not well educated or experienced with Lyme), and it looks like they didn't run all the necessary tests for co-infections. Lyme tests are notorious for false-negative results, but if you run it through Igenex Lab, you have a better chance of an accurate result because they test for more Lyme-specific bands than the other labs. Also, you need to run tests for Bartonella, Babesia, Erlichia and a few others. I would get a second opinion from a Lyme-literate doctor (Dr. T is not Lyme-literate), as many kids with PANDAS/PANS have turned out to have Lyme. If you are in/near New Jersey, you should have no problem finding a good Lyme doctor to run these tests and do a full evaluation. Many of them have seen a number of PANDAS/PANS kids, so they will understand what you are dealing with.

Great articles! Thanks for posting.

Glad you've found this group and are on your way to finding answers for your daughter. Many parents have come to realize that autism is medical and that treating underlying medical issues often helps children shed their autism symptoms/diagnosis. There are a host of medical issues involved with autism and Lyme and coinfections is definitely one. So, while I do think treating Lyme will help her, I think you need to do much more. Here are a few things that many autism parents do to recover their children: gluten/casein-free diet (almost always an issue for autistic kids); eliminating other foods as needed, such as sugar, soy, corn; chelating heavy metals if found; stopping vaccinations as these stress the immune system and contain heavy metals; supplementing deficient vitamins/minerals; correcting methylation pathway issues; testing for and treating other chronic infections such as Candida, parasites, viruses; and healing the gut/immune system. An integrative LLMD or DAN! doctor should be able to help with all of these. Good resources include Autism One, Generation Resue, Safe Minds, and any online group for parents treating their children medically. Their are thousands of parents doing this, so the resources shouldn't be hard to find.

This is just an idea, but we are on a wait list to work with Amy B. Scher, who wrote the book This is How I Save My Life. She is an "energy therapist" who was recommended by our Lyme doctor several years ago. She focuses on energy, emotional healing from trauma, thought processes, attitude, etc. My ds15 and I got on her wait list 9 months ago - at the time she estimated a 6 month wait for us. I had talked to her 4 years ago, when she had no wait list, but I was skeptical at the time. The more I learn, the more convinced I am that she will be an important component of healing for us. She has a website and FB page you can check out, and has an online group she runs (which I believe has no wait list). She was very ill with Lyme as a teen/young adult, so she gets it.

I recommend starting a new thread with a title something like "Need PANDAS-literate/Lyme-literate MD in Manitoba." That way more people will see what you need right away. And if you see a doctor who knows PANDAS AND Lyme, you will be in good hands.