DAN! Doctor Update

We had an appointment with Dr. Berger last Friday. We did this appointment via phone, and it lasted for 1.5 hours. We discussed A LOT. Instead of trying to type all of it out, I've copied and pasted the notes from our call.

ES 2 cups per bath
ES rubs once a day
Cod liver oil 2 tsp daily
carnosine 2 cap twice a day
Nu Thera 1 cap twice daily
Calcium 1/8 tsp twice a day
Factor-4, 1 cap daily
Diflucan 1/2 tsp daily
Vitamin C 1/16 tsp twice daily

AKG - much rocking and agitation
Wt: 34 1/2 lbs

The repeat zinc level was not high like before, that must have been a lab error. The ratio of copper to zinc is mildly high but I don't think it is significant. The family reports they really can only do 1 Epsom salt rub a day in addition to the baths. I advise they do the best they can, but the sulfate level is in range now so he must be getting plenty. The ammonia level is normal. I see no reason to give the alpha ketoglutaric acid. The glutathione level was again low on the repeat (though not as low as we had originally seen). I would recommend the continuation of glutathione as a primary therapy. I would first like to do this as a transdermal agent to try and avoid IVs if at all possible. If we do not see a clinical improvement like we did with the low dose IV glutathione (we never got to the higher dose) or if with the transdermal we are not seeing the values of glutathione coming up, then the IV should be reconsidered. We will make up a transdermal glutathione that has 500mg per dose. For the first week, apply 1 dose a day. Then if all is fine increase to 1 dose twice a day. This is applied to the chest or back.

In addition, we discussed how MB-12 is a vitamin that helps to stimulate the internal production of glutathione. I would like to also start this therapy. The MB-12 is given as a subcutaneous injection (at a 30-degree angle) to the outer buttocks or thigh. It is given every 3 days. Place a pea-sized drop of EMLA cream (lidocaine) on the appropriate spot on the skin and rub it in well (mark the area with a ball point pen) and then give the injection about 45 minutes later. Just prior to administering, wipe the area twice with alcohol. If you see a bubble form under the skin you went to shallow, if you see any pink color to the urine, you hit the muscle and went too deep. We will use a dose of 1250mcg. It will come as pre-filled syringes. Keep them in the fridge until 1 hour before administering, then take out so it warms to room temperature. If you do not have 60 minutes ahead of time, roll the syringe between your hand for 5 minutes. Just before you give the injection, pull back on the syringe so that a small amount of air enters the syringe, then slowly squeeze the air back out. This is so the plunger will slide smoothly. Do not pinch the skin before administering. If you see anything negative from the MB-12, immediately start giving him 1/2 capsule of folinic acid twice a day. if there is still a problem 4 days later increase to 1 full cap twice a day. If things are not better several days after that, stop both treatments and call me. If you do not see anything negative, do not start the folinic acid now, rather we will try it in about 2 months into the MB-12, as for some people the addition of folinic acid brings even greater benefit. The reason we do not do it to start off with is that there are some people for whom the folinic acid blocks the action of then MB-12.

We are still seeing high dihydrotestosterone and DHEA, so we know the fluconazole did not treat this appropriately. We are seeing absolutely no yeast in the stool now, so we know that the fluconazole worked for this and any clinical improvement that was seen due to the fluconazole must have been through yeast elimination. If we were to not continue any antifungal therapy, there is a very high chance the yeast will come back I would therefore like to start him on Nystatin in place of the fluconazole and see if there is anything negative when the change occurs. If not, then in a few months we will repeat the stool to see if the Nystatin is holding the yeast down. The dose for the Nystatin would be 1/4 tsp of the pure oral powder twice a day. When you get the package, please make sure it says "for oral use".

For the hormones that are high, we discussed the various treatment options that are available (including licorice root, cortisol, lupron and spironolactone) , and at this time the family would like to try licorice root. The active ingredient that we dose on is called glycyrrhizin. The dose would be 3mg twice a day (which is just under 0.2mg./kg/dose). Prior to starting this please have his blood pressure checked locally, and until we get settled on a dose (we may need to go higher if we are not seeing the hormones come down but if the cortisol stays down) we should get the blood pressure repeated every 2 weeks. Then after 1 month we will repeat the testosterone, dihydrotestosterone and DHEA and see if there was a change. We also will get a cortisol level and there are a few other hormones that can be affected as well that we have not checked yet but I would like to look at for safety purposes. Please do not stop this therapy (unless there is a negative reaction of course) and get a refill to get you through to our next
appointment if you need to.

We went over the basics of performing a chelation challenge. I would go with rectal EDTA CaNa2 at a dose of 750mg as the challenge. We can discuss this further in the future or if the family wishes to go forward before we formally speak again, I can send the instructions. We also discussed the possibility of doing an IV chelation challene at the same time we poke him for blood since we will be in his vein already. If this is an option lets discuss it for 15 minutes before we get to the blood draw appointment.

First change over to the Nystatin.
Assuming all is fine, 1 week later start the TD glutathione at once a day.
Then 1 week later increase the glutathione to twice a day.
Then 1 week later start the MB-12.
Add the folinic acid if needed.
Then 2 weeks into the MB12 start the licorice root.
Then after 1 month of the licorice root we will repeat the hormones.
If the family is going to do the chelation challenge test before we speak again, do it 2 weeks after starting the licorice root (or with the blood draw if IV). Then we would have the urine results back by the time the hormone results are back.

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