Before I get into the protocol we’re using to recover Nicholas, I just want to mention that Andy’s books, Amalgam Illness and Finding Hidden Hair Toxicities have been two of the most helpful books I have purchased yet. (Best place to purchase them is from noamalgam.com) Amalgam Illness has a wonderful section all about supplements and I’ve referenced this section more times than I can count. He explains the plateau many parents experience while chelating – and why you should continue because you will start seeing gains again.
The Protocol:
Dosing – 1/8 to 1/2 mg of DMSA (and then add in ALA after a few rounds or months if there was recent mercury exposure) per pound of body weight. So, a 50 pound child’s dose would be 6.25 – 25mg per dose.
Dose Frequency – Every 3 hours from Friday through Monday (including overnight – you can stretch to 4 hours while asleep, but no more)
We chelate every weekend unless I need to sleep through the night without getting up to give him his dose or if we have something else going on. Some parents do every other weekend.
Many people ask me how I possibly get up in the middle of the night to give him his dose. Well, I have no other choice. After researching other protocols, I felt that this was the one that was safest. I know there are others who give their child DMSA every 8 hours and still see gains, however, I have also heard from many others that this worked for a while and then they hit a wall and their child regressed. The problem with infrequent dosing protocols is that the half-life of the chelator is not taken into account. For example, when you give doses of dmsa every 8 hours for 3 days, this is what is happening: dose > redistribution > dose > redistribution > dose > redistribution > dose > redistribution > dose > redistribution > dose > redistribution > dose > redistribution > dose > redistribution > dose > redistribution. When you dose properly in 3-4 hour intervals, this is what is happening: dose > dose > dose > dose > dose > dose > dose > dose > dose > dose > dose > dose > dose > dose > dose > dose > dose > redistribution. You want to minimize redistribution as much as you possibly can.
Getting up does get easier, I can assure you. On these weekends, my husband and I take turns with the night doses – I take the first one (and sometimes I stay up researching, then go to bed) and then he takes the 6am dose – so at least we both got a descent stretch of uninterrupted sleep.
Many people have also asked me about yeast during oral chelation because they have been made to believe that yeast would be uncontrollable. We were told by a DAN that our only choice for chelation would be IV because my son is a gut and yeast kid. Well, in our case, he could not have been more wrong and unfortunately the strong-arm technique to get me to subject my son to IV’s (when taking him for bloodwork was a nightmare) and not even agree to oversee my son’s case for a trial of this protocol just ended up in him losing a patient – and a recovery story.
The yeast has not been what I thought it would be – and in 31 rounds, we haven’t skipped weekends because of yeast or gut issues – NOT ONCE. I have Nicholas taking 40mg of Biotin every day split into 4 doses of 10mg. Nicholas is also taking 900mg of Enhansa now (best supplement EVER!) and 2 caps of Klaire’s detox probiotic, 2 culturelle and a dropperful of Living Streams probiotics. That’s it.
The key here is to start slow – making your child sick or intolerable does not mean you are going to recover him/her faster. Giving larger doses increases your chances of gut issues, yeast flares, etc – and you will have to stop chelating to deal with these issues – so in the end, it’s just not worth it. You want to find a dose they are comfortable with so you can continue to live your life while chelating. This is not a race – and this process can take you 1 or more years, so keep telling yourself… This is not a sprint, this is a marathon.
How do you split up 25mg capsules? Well, some folks open the capsule out and dump it onto a clean surface and split the piles into equal sizes (using a razor blade, credit card, etc.). If you want a 5mg dose, you split a 25 capsule into 5 equal piles. Exact measurement is not required — the dosing frequency is more important than having a 5.25mg dose and then a 4.75mg dose.
Others, myself included, will take 5 teaspoons of juice (I use 4 25mg dmsa caps and 2 25mg ALA caps now for 5 doses) and will mix all of these capsules up very well. I will then put one dose in a syringe that hold’s a teaspoon and do this 5 times. I put the syringes, tip up, in the refridgerator until I am ready to give the dose. (I do this when I need to give dose 1, so that the last dose has only been in the fridge 12 hours. Longer than this, you can start losing potency from what I understand. Then when you are ready to give it, squirt it in a cup or whatever you are giving it in and you’re done. Using an acidic juice, like orange, works best.
There are suggested (required, really) supplements that your child should be on prior to starting. They are probably getting many of them in their multi-vitamin, but check just to be sure. As with all supplements, add one at a time so you if your child is reacting to one supplement in particular.
Calcium: 5-20 mg/pound divided into four doses over the day
Essential Fatty Acid (fish oil or flax, see notes above) 1 to 3 tbsp/day
Magnesium: 10 mg/pound divided into four doses over the day
Milk Thistle: ¼-1 cap (20-80 mg) per dose/ 4 times a day
Molybdenum: 5-20 mcg/pound divided into four doses over the day
Selenium: 1-2 mcg/pound/divided into four doses over the day
Vitamin A: 5 RDA’s/day. Be sure to consider if your EFA is a source
Vitamin B: 12.5-25 mg/4 times a day
Vitamin C: 5 to 20 mg/pound per dose/4 times a day
Vitamin E: 500 IU/day
Zinc: 1 mg per 2 lbs + 20 mgs divided into four doses over the day.
Want support from other parents using this protocol?
Join us on this group:
http://health.groups.yahoo.com/group/AndyCutlerChelationForAutism/
A great post from Andy:
Andy’s post about recovery percentages, etc.
March 21, 2010 – Edited to add:
Change the variables and you’re not doing Cutler’s protocol…
Cutler’s protocol is not just simply dosing dmsa & ala every 3-4 hours. If you change any of the variables, you are not necessarily following Andy’s protocol. I’m getting more and more feedback lately from parents that concern me, so I just want to clarify a few things in hopes that it helps…
1. Night dosing IS required. Skipping the night doses or deciding to dose at midnight, then 8am – is NOT this protocol. Eliminating the dose in the middle defeats the purpose of doing the protocol as you are now creating several opportunities for the redistribution of metals versus the one per round stated on Andy’s protocol.
2. If you start with high doses, versus the 1/8th -1/4 mg per pound, you are not increasing the amount of metals that are going to be pulled as much as you might think. The whole point of the protocol is to dose low so as few side effects are experienced as necessary, not to make yourself or your child miserable. You DO NOT start a 40 pound child on a 25mg dose. We saw results with 8mg! Have a little faith before you go overboard with the dose.
3. The top dose is 1/2mg per pound. Again, you are not increasing the amount of metals that are going to be pulled as much as you might think. The whole point of the protocol is to dose low so as few side effects are experienced as necessary, not to make yourself or your child miserable.
4. Giving a “sprinkle” of ala or dmsa is not Cutler’s protocol. Capsules should be divided into the doses you intend to give. I hear of parents opening capsules and just giving a sprinkle of each not knowing how much they are or aren’t giving. If you cannot eyeball the contents of the capsule to divide into the appropriate dose, ask your dr for a script and get them compounded to the correct dose.
5. Starting an aggressive anti-viral protocol at the same time you start chelating is not recommended. Most find that waiting to start addressing viruses until after round 50 makes life so much easier for all involved.
6. Do not assume that your child does not have yeast issues. If you are chelating and not seeing gains, it could be that any gains you would see are hidden by yeast. Get on a good anti-fungal, whether it’s natural or rx and see if that clears it up.
7. Adding products like NDF, NDF+, chorella, cilantro, etc.Adding any of these to Cutler’s protocol is not a good idea. You can search Autism-Mercury’s archives for Andy’s explanation if you so choose and I would actually recommend you doing just that. For me, there is not enough research about any of these being a true chelator doing more than just moving metals around. Using dmsa and ala have worked very well here.