NancyD

We ran the anti-cerebral folate receptor abs test at SUNY under Dr. Edward Quadros and DD's binding antibodies came out positive. Negative for Blocking antibodies. Here are links to Dr. Quadros' study: http://www.nature.com/mp/journal/vaop/ncurrent/full/mp2011175a.html and http://www.nature.com/mp/journal/vaop/ncurrent/full/mp201222a.html

Has anyone tried Leucovorin?

Anyone with homozygous 677 MTHFR trying Lovenox? Have you noticed any improvements? Can you get it dye-free? First we're going to try increasing (slowly) 5-MTHF from 10 mg to 15 mg. But if that doesn't help then our doctor wants to try switching DD from 5-MTHF to Lovenox. We just tested her anti-folate receptor antibodies and while her blocking antibodies came out negative her binding antibodies are elevated. Would love to hear from anyone else who has done this test and anyone who has tried Lovenox.

Please send info to me too. I'd love to go.

Thanks so much, Dedee! I passed your names on to my friend. Really appreciate it! Nancy

I have a friend whose child I am sure has PANDAS but she must see a TN MD as she has TN-state insurance (TENN Care). Can anyone from TN recommend an MD who will at least consider PANDAS and order some baseline tests? I did not see any TN MDs on the pinned list. Thanks!

Have you checked for MTHFR gene mutation? This can cause cardio problems.

Delighted it worked as well for you. So simple!

I taught my DD to swallow pills when she was 4 by having her put the pill on her tongue in the back of her mouth, drink water, and then I would say "LOOK UP AT THE SKY". The pill went down easily and because she did it once she knew she could do it again. There was also a strong desire to not have all her capsules (including omega 3 and CLO) put into her daily juice!

It takes 10 business days to get results from the time they receive the blood. The results will go directly to the doctor who ordered the test. How did her CD57 come out? And did you do c4a/c3a? If IGeneX shows any Lyme-specific bands that are positive then you might want to consider postponing IVIg until after you have started treating (at least a couple of months). Otherwise the benefits from the infusion may be short-lived. You may even find you won't need IVIg after treating for TBIs. I like Dr. T's suggestion to do a slow drip in the hospital over two days. I am not familiar with zofran, lasix, or diamo so I can't comment on that but I would check out their side effects and interactions with other drugs, supplements, and diseases.

Yah...congrats! Which doc will be overseeing it? Not to be a nag, BUT... have you (or will you) be doing IGeneX testing before proceeding with the next infusion? I think it's been ~3 months since your last infusion and it's really important to rule in or out TBIs. Predisone could certainly be the cause of DD's pancreatitis. That is one of the possible side effects. I would definitely steer clear of prednisone, especially since she has a MTHFR mutation and you know she is prone to pancreatitis. Here are the steps we take to ensure a headache-free infusion (my DD has had many over the years): 1. 2 weeks prior, she starts hydrating with lots of water. 2. 2-3 days before she starts taking 600 mg ibuprofen tid. 3. Just prior to the infusion, she eats a healthy meal (don't do IVIg on an empty stomach!), drinks lots of water, and takes 2 benedryls and 600 mg ibuprofen. 4. During the day of the infusion (or days, if she's doing a 2-day infusion) she takes benedryl and ibuprofen every six hours and drinks TONS of water non-stop. 5. The day after the infusion she takes benedryl only if needed, but continues to take 600 mg ibuprofen tid for two weeks. She continues to drink TONS of water for two weeks after. Also after the infusion she takes an epson salts bath 2-3 times per week. This helps with any herxing. 6. Keep stress to a minimum for days (even weeks) after. What is key for my DD: WATER, WATER, WATER and ibuprofen tid. Don't give tylenol as that will lower DD's glutathione levels. Particularly important since she has MTHFR mutation. Hope it goes well! When are you doing it? Nancy

Yes, that's the problem. I just checked HPHC's provider lookup at https://www.providerlookuponline.com/harvardpilgrim/po7/Search.aspx and his name is listed under PPO but not HMO.

When DD last saw Dr. B in Feb 2011 he was contracted with HPHC. They covered DD's visits completely, except for a $20 co-pay. They also covered her IVIg infusions. We have a PPO plan although they covered it in-network.

Just to add to the connection between MTHFR and PANDAS/PANS... As Laura stated, if the methylation cycle is not working properly, folate will not convert to methylfolate. If folate is sitting around unused it can break down into glutamate (an amino acid produced by the body that plays an essential role in metabolism; it is the main component of many proteins and present in most tissues). High levels of glutamate may contribute to obsessive compulsive disorders (OCD). And as Laura indicated, the methylation cycle is responsible for the primary source of glutathione production in the body. Glutathione is the most potent and abundant antioxidant in our bodies, critical for protecting cells and the immune system, boosting the blood, and neutralizing toxins in the body. People with MTHFR abnormalities usually have low glutathione levels, which makes them more susceptible to stress and less tolerant to toxins. http://www.dramyyasko.com/resources/autism-pathways-to-recovery/chapter-3/

I can try to explain as simply as I can and it's connection to PANDAS/PANS but it won't be short. I am off for a couple of appointments and can write something this afternoon. If Laura or anyone else wants to take a crack at it, please do. If not, I'll do so when I get back.

Laura, I agree that it may not be easy finding a doctor who understands how to treat MTHFR mutations (although many integrative or DAN doctors do) and I agree it can get costly. However, I have to respectfully disagree with your suggestion that parents should treat on their own without the guidance of an experienced doctor. There is very little I disagree with you on, but I think this is potentially risky given the complexity of so many children of parents on this forum. Not every parent will research and pour through studies and journals the way you and some other parents do. And not every parent will try the proper supplements slowly and methodically. Furthermore, there is a different treatment for the different genotypes. Plus, without knowing what other genetic mutations the child has that may interact with the methylation process (COMT, for example), you don't have the entire picture. So I encourage parents to work with a DAN or integrative clinician who understands how to treat MTHFR mutations. Or at least, go online and order the nutrigenomic testing from Amy Yasko, PhD and you will receive from her lab a report with recommendations for treatment. You can then join her forum for guidance. No tomatoes here, but I had to speak up.

Buie is very supportive of DAN but he's not a "DAN doctor". You won't find a DAN doctor affiliated with a major teaching hospital like MGH. Did you try scheduling him at Newton-Wellesley? Or get on his cancellation list? For treating MTHFR you really need to see a DAN or integrative doctor. Would love some help on this one please. I have no idea what to do... Also , would you suggest we all get testing in the family?

It sounds like Bartonella to me too. Foot pain is a common sympton. I'm guessing your DS is experiencing herxing from the Rifampin, which is frequently used to treat Bartonella. My foot pain got worse after starting Rifampin and then it got better. Finally disappeared. I found Epsom salts baths helped, as well as saunas and aleve (for me, ibuprofen for DD16). DD also did bentonite clay. Diet has worked wonders -- i eliminated all dairy, cafeine, sugars, simple carbs. Eat mostly vegetable-based diet, protein, fruit. Very difficult to get a child or teen to eat this healthy. Be sure to support liver and adrenals with supplements and don't forget to detox, detox, detox.

I am wondering how much of a role the COMT gene plays, since that affects methylation as well. Does it add another more complex layer to repairing the cycle? Has anyone tested COMT for mutations?

HPHC has changed their policy a few times re IVIg for PANDAS over the years. It's crazy...one year PANDAS is included, the next year it's excluded, the next year it's included, now it's excluded again. I would think you could fight this. Have you tried going to the state insurance commission? That was where I was headed just before Dr. B got us approved based on low serotypes. I don't know if you'll do any better with BC/BS -- they consistently denied IVIg for PANDAS. They would only cover it for low IgG levels.

My DD got rid of her tics before we started treatment for Lyme and Bartonella, thanks to HD IVIg, and thankfully they never came back. DD was 13 at the time and she had severe motor and vocal tics. About 10 weeks post-IVIg she was ~70% and within a year she was 100%. BUT, IVIg never helped her anxiety/OCD -- in fact, it got worse. It did help to put her others symptoms (rages, sleep problems, mood dysregulation, etc.) into remission for a year at a time until we treated Lyme and co-infections. DD is 16 now and we're still trying to get to the bottom of the anxiety/OCD (her only remaining symptom), two years post-Lyme/Bartonella/MycoP treatment.

I know the battle all too well...although I have to say I had much better luck with HPHC than with BC/BS of MA. BC/BS of MA would only approve infusions for low IgG levels. Are you doing IVIg through Dr. B? Because he got DD approved for 3 infusions two years ago through HPHC when my MA doctors could not -- DD's IgG levels were high this time because of prior infusions however she failed most of the Strep Pneumoniae Serotypes, IgG (14 subtypes). DD had many infusions in 2008-2009 at CHB and they were covered by HPHC, but she had low IgG levels. We had Tufts PPO many years ago and it was horrible. I had to fight for EVERYTHING. So check it out carefully before going with Tufts. I am considering going back to BC/BS now that DD no longer needs IVIg. BC/BS covered my integrative doctor whereas HPHC won't cover an integrative doctor under any circumstance (not even standard lab tests).

We use someone I found on the IOCDF website who is really excellent, ERP trained, and she takes HPHC. But I can't remember where you live. She's in Wenham -- that may be too far for you. If you want her name PM me. Otherwise you may want to check out the therapist finder on the IOCDF site. I suggest you find someone who is ERP trained.

What do you need this person for -- testing, CBT/ERP, school observation, evaluations, recommendations? Does it need to be a psychologist or can it be a social worker? What about insurance?

I have always gotten back 80%. We have run IGeneX a few times for DD and myself.