PANDAS and MTHFR -- Relation?

[LNN]

 

LLM after reading your posts on MTHF 5 I have dialed down DD's dose (turning 9, 65 pounds) She started at the same time as Rifampin for Bart and I have seen rages which I have assumed was Bart. She was taking 5 MG/day. I have 10 MG capsules so am trying my best to approximate 1 MG (am ordering a lower dose) . My question to you is, how quickly do you see a difference? Its so hard to know whats what. Also I have been giving Burbur, it seems to help and she is actually willing to drink it, so I am wondering if it is in fact Bart. Over the weekend she said I don't kmow whats wrong with me, I'm crying and I'm not sad. She said she feels out of control with the rages. Didn't really happen before the Rifampin. The good times are much, much better/more frequent, she wants more activities etc. DD has one copy of 677T and low glutithiaone (sp??). I am giving 300MG NAC, tried more but I dropped it back to 300. (more affordable at 300 anyway lol)

 

Well, you have a lot going on right now, so I'm not sure it's possible to tease out the role of methylfolate dosage. To answer your question - I stopped methylfolate and all supplements entirely (except probiotics) for 2 days in order to do a urine test. At the end of the second day, I saw a dramatic improvement in the rages - but realize she wasn't dealing with bartonella or any other infection at the time. I then added back one supplement at a time, saving the methylfolate for last. When I added the methylfolate back in at the old dose, I saw a return of lability within 2-3 days. So for us, it was pretty clear. At that point, I took her back off and stayed off for a week. At the end of the week, I saw a gradual return of mood issues. So I knew I git ugliness at 400mg daily and ugliness after 7 days of nothing. That became my range of what was too much and what was too little. Then we tinkered until we settled on her current dose of 67mcg every other day (67mcg = 1 drop of Yasko's methylmate B liquid http://www.holisticheal.com/methylmate-b-nutritional-supplement.html)

 

It seems absurd that such a low dose should do anything. But here we are in the 3rd week of January - DDs worst month of the year where she traditionally descends into madness for the past 3 years, and she's steady. No mood issues. So go figure. (DD is 53 lbs)

 

In your case, it's going to be much harder. You don't want to stop the rifampin or even the burbur if it's helping. But both Yasko and Ben Lynch suggest 400mcg/daily as a general dose for children as a starting point (both also say you have to tweak from there - everyone has different needs based on unique combos of other genetic mutations and diet). So maybe discuss this with your doctor and try changing nothing except the methylfolate and see what happens for a week. Alternatively, you could try a one-time experiment using niacinamide (B3) as described in the link I posted above (http://mthfr.net/overmethylation-and-undermethylation-case-study/2012/06/27/). During a rage, give DD 50mg of niacinamide ( I opened a 500mg capsule and sprinkled what I thought was 1/10 of it into some food b/c I couldn't find smaller doses). If the rage subsides within a short time (it worked on my DD in 45 min), then that might be a clue the overmethylation is behind the rage. If it didn't do much, then that might point to herxing instead.

 

Of course, Dr O has way, way more experience at this, so these are just ideas to talk about with her, if you can get a moment of her time. But if you find yourself tearing your hair out one evening, or over a weekend, a one-time niacinamide test or a few days on a methylfolate holiday (w/out any methylfolate) might give you some clues. That's how we ended up figuring it out for my DD.

 

(oh - and just to muck things up more, my DD does not do well on NAC. Tried it twice - both times before treating MTHFR - so that may have had something to do with it. But one other option is to stop the NAC and see if you notice any difference after a week - just to rule it out as a contributing factor).

Edited January 22, 2013 by LLM

[Pandasphilly]

Oh, I blame Pandas for all sorts of things - certainly you can blame it for typos!

 

Ok, glad you're not giving B3. I too once thought about using B3, with all the good stuff I read about it. Until I came across how it works in methylation.

 

The stuff you're giving seems good for the C677T mutation (tho you might ask your Dr about adjusting doses of methylfolate to see if that helps the rages - my DD uses a ridiculously low dose - every other day. When I've done every day, she starts to get agitated again. So playing with dose is just an idea if you get frustrated. Gaba also helps calm both my kids on bad days(one has MTHFR mutations, one doesn't). We don't use Gaba daily - just when they're in rough patches.

 

What I don't see for your DS is anything for A1298C. Are you treating that or just focused on C677T? I can't find tons of info on how to supplement for A1298C - Yasko talks about BH4 which you can't get in the states. She also mentions TMG but not many people talk about how well it does or doesn't work.

 

LLM,

Bh4 has become available online through NutriMedical. It comes in 60 capsules of 2.5mg. I ordered & received it. They did not mention it comes in US mail bag with refrigerated packs and I hadn't checked the mail. It happened to be a warm day so I'm not sure if it's compromised. Something to help others as it was a bit expensive. Dr. Neil Rawlins has it posted where to find it.

[dut]

Hi - our dd is compound hetero with c677t and a1298c and ds homo with c677t. (I'm also compound like dd).

 

We are all taking methylguard plus by thorne.

 

Funnily enough, the person who gets the most from them is dh. He hasn't been tested but has vascular disease in family and must carry at least 1 c677t cos of son's double... so he gets them and has seen a real turn around in mood. Much more even keel, rebounds better emotionally, less easily aggravated, easier anger management. My dh just doesn't take rx/otc stuff but has consistently reminded me to top him up

 

Pr40 - methylguard plus has TMG as one of its ingredients. It has been the only place that I could find it - although, I didn't do an exhaustive search.

[LNN]

 

LLM,

Bh4 has become available online through NutriMedical. It comes in 60 capsules of 2.5mg. I ordered & received it. They did not mention it comes in US mail bag with refrigerated packs and I hadn't checked the mail. It happened to be a warm day so I'm not sure if it's compromised. Something to help others as it was a bit expensive. Dr. Neil Rawlins has it posted where to find it.

 

Good to know - thanks! Have you noticed anything?

[Hopeny]

She started the MTHF, Rifampin and Klaires probiotic at the same time so you are right it is hard to tease out what is fron what. We are also treating yeast, another complicating factor. Since starting a compulsion returned (skin picking), and some raging and rigidity. I put all the supps in a smoothie and she went three days without it and she actually seemed worse. Initially when I started the smoothies she was much better and had pain reduction but pain returned I have done my best to estimate 1/10 of a capsule to cut the MTHF dose down and I have to say I am seeing a bit of an improvement. I will defintely speak to Dr. O'. about this, but my consult is weeks away and she already answered one email for me on something else so I don't want to ask if I don't have to. I am not sure how I feel about the NAC, definitely higher doses were not good. I read about the biofilm busting aspect so am trying to plow through. She has made so much progress generally and is sooo much better most of the time that I feel that this is working fairly well.

 

 

 

LLM after reading your posts on MTHF 5 I have dialed down DD's dose (turning 9, 65 pounds) She started at the same time as Rifampin for Bart and I have seen rages which I have assumed was Bart. She was taking 5 MG/day. I have 10 MG capsules so am trying my best to approximate 1 MG (am ordering a lower dose) . My question to you is, how quickly do you see a difference? Its so hard to know whats what. Also I have been giving Burbur, it seems to help and she is actually willing to drink it, so I am wondering if it is in fact Bart. Over the weekend she said I don't kmow whats wrong with me, I'm crying and I'm not sad. She said she feels out of control with the rages. Didn't really happen before the Rifampin. The good times are much, much better/more frequent, she wants more activities etc. DD has one copy of 677T and low glutithiaone (sp??). I am giving 300MG NAC, tried more but I dropped it back to 300. (more affordable at 300 anyway lol)

 

Well, you have a lot going on right now, so I'm not sure it's possible to tease out the role of methylfolate dosage. To answer your question - I stopped methylfolate and all supplements entirely (except probiotics) for 2 days in order to do a urine test. At the end of the second day, I saw a dramatic improvement in the rages - but realize she wasn't dealing with bartonella or any other infection at the time. I then added back one supplement at a time, saving the methylfolate for last. When I added the methylfolate back in at the old dose, I saw a return of lability within 2-3 days. So for us, it was pretty clear. At that point, I took her back off and stayed off for a week. At the end of the week, I saw a gradual return of mood issues. So I knew I git ugliness at 400mg daily and ugliness after 7 days of nothing. That became my range of what was too much and what was too little. Then we tinkered until we settled on her current dose of 67mcg every other day (67mcg = 1 drop of Yasko's methylmate B liquid http://www.holisticheal.com/methylmate-b-nutritional-supplement.html)

 

It seems absurd that such a low dose should do anything. But here we are in the 3rd week of January - DDs worst month of the year where she traditionally descends into madness for the past 3 years, and she's steady. No mood issues. So go figure. (DD is 53 lbs)

 

In your case, it's going to be much harder. You don't want to stop the rifampin or even the burbur if it's helping. But both Yasko and Ben Lynch suggest 400mcg/daily as a general dose for children as a starting point (both also say you have to tweak from there - everyone has different needs based on unique combos of other genetic mutations and diet). So maybe discuss this with your doctor and try changing nothing except the methylfolate and see what happens for a week. Alternatively, you could try a one-time experiment using niacinamide (B3) as described in the link I posted above (http://mthfr.net/overmethylation-and-undermethylation-case-study/2012/06/27/). During a rage, give DD 50mg of niacinamide ( I opened a 500mg capsule and sprinkled what I thought was 1/10 of it into some food b/c I couldn't find smaller doses). If the rage subsides within a short time (it worked on my DD in 45 min), then that might be a clue the overmethylation is behind the rage. If it didn't do much, then that might point to herxing instead.

 

Of course, Dr O has way, way more experience at this, so these are just ideas to talk about with her, if you can get a moment of her time. But if you find yourself tearing your hair out one evening, or over a weekend, a one-time niacinamide test or a few days on a methylfolate holiday (w/out any methylfolate) might give you some clues. That's how we ended up figuring it out for my DD.

 

(oh - and just to muck things up more, my DD does not do well on NAC. Tried it twice - both times before treating MTHFR - so that may have had something to do with it. But one other option is to stop the NAC and see if you notice any difference after a week - just to rule it out as a contributing factor).

[Pandasphilly]

 

LLM,

Bh4 has become available online through NutriMedical. It comes in 60 capsules of 2.5mg. I ordered & received it. They did not mention it comes in US mail bag with refrigerated packs and I hadn't checked the mail. It happened to be a warm day so I'm not sure if it's compromised. Something to help others as it was a bit expensive. Dr. Neil Rawlins has it posted where to find it.

 

Good to know - thanks! Have you noticed anything?

 

We have yet to add it to his regime. Let me know if you get any results and I'll do the same

[Hopeny]

double hmmm, just posting an update since approx 1 week I have lowered the dose to the best I can approximate 1 MG insteaad of 5 I have seen a HUGE (maybe 80+%) reduction in skin picking which was one of DD's original compulsions that began when DD's mess started, went away and came back due to what I thought was Rifampin but now I am suspicious was maybe too much MTHF-5. DD also seems to be less anxious about getting to school, has been sitting in kitchen with coat on 15 minutes before start time again since around starting MTHF (again I attributed to Rifampin/Bart) and on Friday I actually had to tell her it was time to go. Must be extremely powerful stuff!

[pr40]

Hopeny -- would you mind reposting after another week with further results?

thanks

[Pic13]

On 1/25/2013 at 8:12 AM, Hopeny said:

It seems absurd that such a low dose should do anything. But here we are in the 3rd week of January - DDs worst month of the year where she traditionally descends into madness for the past 3 years, and she's steady. No mood issues. So go figure. (DD is 53 lbs)

Hi all, new here and may need help with acronyms - what does DD, DS, DH stand for?  I'm thinking D (dear??) daughter, son, husband?  Am I way off?

Noticed in quote above DD worst month of year is January for past 3 years.  Same here for my son, who started out of the blue with sudden onset OCD leading into severe panic attack, anxiety, separation anxiety and school refusal.  He was just talking to me today about how the last few years it's started in January with original onset starting at 13 in September (3 days into school year).   Dr. says almost surely a candidate for PANDAS, tested positive for MTHFR mutation, as did I but I don't have the symptoms he does with it (I am diagnosed with Autism, high functioning with ADHD. He was recently diagnosed with ADD as well, but more the focus not the scatteredness I experience.)  He is currently having a flare, which always comes with cysts around or in his ears.  Currently also accompanied by two different stys on his right eye.  The cysts are very painful, always in different degrees of size and duration.  But always come with anxiety or depression.  He is taking a slew of suppliments, using Manuka honey topically that seemed to be working, but here we are again.  He is now 17.  Got bloodwork for strep titres today.  

One of my questions for any or all of you is -  has anyone else seen cysts with flares?  Dr. feels they are built up toxins trying to get out of his body as he does have issues clearing toxins.  Anyone read anything here I've written and have any input at all I'm all ears.  This kid never had any issues in his life, at all.  Star soccer player, successful in school, quiet and shy but has a great group of friends through it all - thank God -  then this came out of nowhere and changed everything.  Oh BTW started AIP diet monday.  any ideas on when we may see some kinds of results or any experiences you want to share?  Also started antibiotic ointment for the eye and cysts, but weren't getting better, so started oral antibiotics today.  In the past they did nothing for the cysts but we have to do something.  Also want to ask, do y'all find antibiotics to be helpful for PANDAS or not or detrimental?  I'm open to hear anyone's thoughts and experiences and I'm glad I found this page.  

[MaryAngela]

@pic13  You are correct about the acronyms. Have you considered having your son eating the Manuka Honey?  I’ve been giving it to my DS 14 this winter.  He had a flare in fall, and used antibiotics, but they tend to cause gastrointestinal issues, so I switched to Manuka Honey.  

Please post any updates on AIP diet.  I’m curious.