How to start

(last edited: Oct 29, 2015)

WARNING: 

Do not use Curcumin when: 

1. You have gallbladder obstructions. 

2. Are pregnant or trying to get pregnant

3. Breast feeding

4. You have problems with blood clotting
From Longvida Curcumin website: Curcumin may enhance the action of anti-platelet drugs, high doses of non-steroidal anti-inflammatory drugs, or warfarin. Do not take if you have a biliary tract obstruction or are taking a steroidal anti-inflammatory such as prednisone.

and also: do NOT take Curcumin and Glutathione supplements at the same time. It doesn't cause any harm, but they may both become ineffective when taken at the same time. In stead of being absorbed separately, they might bind to eachother in the intestine and both would become useless. Taking them 1 or 2 hours apart, seems to fix the problem. The same could be the case for N-Acetyl Cysteine.

If you are using stomach acid reducing medication, Curcumin could cause stomach pain. I've heard this from two users. Not everyone experiences this, but if you notice stomach pain, this may be the reason for it.

Do not use Genistein when:

1. You are pregnant or trying to get pregnant

2. Breast feeding

3. You have, have had, or are at an increased risk of hormone related cancers. 

Please discuss with your doctor first

Please be aware that Curcumin, Piperine and Genistein (especially at higher doses) can interfere with other medications. Please discuss with your doctor before starting new medications.

If you are often taking other oral or IV medications, I would suggest you use a Curcumin without piperine. like Dr's Best Phytosome Curcumin.

WHICH PRODUCTS DO I USE?

CURCUMIN:

We have always used AOV 811, but lately I've been noticing that it doesn't dissolve well. I find specks of Curcumin visible in J's stools and it doesn't dissolve well in hot milk anymore either. I've contacted AOV about it, but they only checked the Curcumin content of the product and didn't address the problem of solubility at all. I am not the only one that has noticed a change in solubility. I was hoping it would be just one batch that was 'off', but all batches that I've received since then, have shown problems with solubility. If Curcumin doesn't dissolve, it can't be absorbed from the intestine. So we are changing to Vitakruid C3-2X, which is similar to AOV, but contains a little more Curcumin per capsule (650mg in stead of 600mg) and twice the amount of black pepper extract (10mg per capsule in stead of 5mg)
It may be a little more potent because of the extra Bioperine, but we'll figure it out!

Vitakruid Curcuma C3-2X:

Ingredients:

Curcumin C3 Complex         650mg

Bioperine                                10mg

California Gold Nutrition

Ingredients:
Curcumin C3 Complex     500mg
Bioperine                              5mg

Available at i-herb.com
120 capsules for $28 is a good deal

 

GENISTEIN:

AOV 805 Genisteine

Ingredients per recommended daily dose (2 capsules!)
Soy isoflavone-complex         440mg
Isoflavones (40%)                  176mg
Genistein (22%)                       97mg (=2 capsules)

WHERE CAN I BUY IT?

First, if you can find a similar product in your country (less shipping cost) go ahead and try. See if you can find Curcumin with Bioperine, and when looking for Genistein please check for exact amounts of genistein in the ingredients. If you choose to use a completely different product, it might work just as well or even better, it just makes it harder to compare to our dosages and effects…

I have found two Dutch webstores that sell these products, are in English and ship worldwide:
www.vitaminstore1.com
www.voedingssupplementennederland.nl (click the UK flag for English)
For Dutch people ordering in Holland I recommend this website for Genistein as they always give 30% discount: www.koopjesdrogisterij.nl
The Vitakruid product can be bought from www.gezondheidaanhuis.nl (ships to European countries, if ordering outside Europe, try Dr's Best C3 Complex, through Amazon for example)

What else is good?
If you buy Curcumin, make sure it containts one of these: Piperine (or Bioperine), Meriva or Longvida

Curcumin

 

 

GENISTEIN

Note of caution: someone using this Natures Aid Genistein (in high doses) was found to have too high levels of Calcium in the blood. Was also using other calcium supplements at the same time. This product contains calcium although exact amounts are not mentioned on the label.

HOW DO I START?

For anyone with gating mutations, I recommend to start with both Curcumin and Genistein. For other mutations I would personally start with Curcumin only for 1 or 2 months and add Genistein at a later date to find out if it is just Curcumin bringing positive effects or the actual combination of the two supplements. It is still a mystery why CurcuminGenistein seems to work for some other mutations, it could be that it is just Curcumin's strong anti-inflammatory and anti-oxidant effects that people are noticing. You don't want to spend money on Genistein if it's not doing anything.

For your weight in KILOGRAMS:

Curcumin 20mg/kg/day
Genistein 1mg/kg/day

Explanation:
Curcumin: weight in kg x 20 = total amount of Curcumin in mg's for one day, split into 3 (breakfast, lunch, dinner)
Genistein: weight in kg x 1 = total amount of Genistein in mg's for one day, split into 3 (breakfast, lunch, dinner)

Calculation example for weight in kilograms:
Let's say you weigh 56kg's
Curcumin: 56 x 20 = 1120mg of Curcumin total per day
Genistein: 56 x 1 = 56mg of Genistein total per day.
Now look further below for how to split capsules and you'll end up with this:
If you are using 500mg capsules of Curcumin use 3/4 (three quarters) of a capsules 3 times a day.
If you are using Life Ext Soy Isoflavones containing 28mg Genistein per caps, use 2/3 (two thirds) of a capsule 3 times a day.
Breakfast: 3/4 caps Curc and 2/3 caps Gen
Lunch: 3/4 caps Curc and 2/3 caps Gen
Dinner: 3/4 caps Curc and 2/3 caps Gen

For your weight in POUNDS (lbs.)

Curcumin 9mg/lb/day
Genistein 0.45mg/lb/day

Explanation:
Curcumin: weight in pounds x 9 = total amount of Curcumin in mg's for one day, split into 3 (breakfast, lunch, dinner)
Genistein: weight in pounds x 0.45 = total amount of Genistein in mg's for one day, split into 3 (breakfast, lunch, dinner)

Calculation example for weight in POUNDS:
let's say you weigh 73lbs.
Curcumin: 73 x 9 = 657mg total per day
Genistein: 73 x 0.45 = 33mg total per day

Now look further below, at how to split capsules. If you have 500mg Curcumin capsules and 28mg Genistein caspules (Life Extension) you can see how to dose.
For Curcumin the closest to 657mg is 750mg, so 3 x 1/2 (half) capsule of Curc per day.
For Genistein the closest to 33mg is 28, so 3 x 1/3 (one third) capsule of Gen per day).
Breakfast: 1/2 caps of Curc and 1/3 caps of Gen,
Lunch: 1/2 caps of Curc and 1/3 caps of Gen,
Dinner: 1/2 caps of Curc and 1/3 caps of Gen.

Or, if you're not good at math, find your total starting dose per day in this table, the last column showing how much to take when split into 3, take that amount from the last column with breakfast, again with lunch and again with dinner.

So split total amount for the day into at least 3. Remember to take it with a meal with at least 10g of fat! and enzymes!

How to split capsules
It doesn't have to be very very precise. Usually you'll end up having to split capsules into parts. Just open them up by sliding them apart and estimate how much you need. I don't expect that to be a problem.

Below are two examples of how to split a 500mg capsule and a 28mg capsules, since those are what most people use.

CURCUMIN
For 500mg capsules (most Curcumin comes in 500mg capsules)

375mg total per day = use 1/4 (quarter) of a capsule three times per day

500mg total per day = use 1/3 (one third) of a capsule three times per day

750mg total per day = use 1/2 (half) of a capsule three times a day

1000mg total per day = use 2/3 (two thirds) of a capsule three times a day

1125mg total per day = use 3/4 caps (three quarters) of a capsule three times a day

(remember this is for a 500mg capsule of Curcumin only)

GENISTEIN

For the Life Extension Soy Isoflavones capsules containing 28mg of Genistein (most people use that):

21mg total per day = use 1/4 (quarter) of a capsule three times per day

28mg total per day = use 1/3 (one third) of a capsule three times per day

42mg total per day = use 1/2 (half) of a capsule three times per day

56mg total per day = use 2/3 (two thirds) of a capsule three times per day

63mg total per day = use 3/4 (three quarters) of a capsule three times per day

(remember this example is for the Life Extensions Soy Isoflavones Genistein containing 28mg of Genistein per capsule!)

If, for small children, you end up with a tiny amount and have to divide that into even smaller doses throughout the day, you could, for example, dissolve the total amount per day in let's say 40ml of hot milk and keep that in the fridge. Use 10ml of the solution each time if you give it 4 times a day, stir first.

The doses above are good doses to start with.
If you want to 'ease' into it, if that makes you more comfortable or if it's for a small child, I'd recommend starting with only the breakfast dose. Do that for 3 or 4 days, make sure everything goes well. When all is well, add the lunch dose. See how that goes for 3 or 4 days and add the dinner dose.
If, for the smaller children, you are having trouble with constipation because of the supplements, you can consider adding a stool softener like macrogol. We use it continuously and have had to go up on the dose of macrogol, when increasing the Curc/Gen dose.

If you want to go up on the dose at a later time, I recommend going up on Curcumin first and slowly increasing Genistein 3 or 4 days later (please note: going up on Genistein too fast - 100mg increase in one day - can cause a headache). Always give at least 20 times more Curc than Gen. 

The idea is to find the most effective dose and/or ratio between Curcumin and Genistein for yourself, while still comfortable with knowing that anything higher than the recommended daily dose by the manufacturer is considered experimental.

My personal thoughts on the best dose
J has stayed very healthy while using 600mg of Curcumin and 25mg of Genistein for 2 or 3 years. In 2012, after noticing the acute effects of Curcumin (see post: why we started giving Curcumin and Genistein in the first place) we went up on the dose to 1200mg Curcumin and 50mg Genistein. It was also time to adjust the dose to his weight at that time I think. His sweat test drop on that dose in 2013 was 28mmol/L (from 118mmol/L to 90mmol/L)
We went up further on the dose after the ex vivo tests in June 2013, very slowly and while being extremely observant of effects and side effects.

So a low dose (600mg Curc and 25mg Gen) has been very effective for J. Would it have been better if we'd given him a higher dose from the start? There is no answer to that. I don't know, we have nothing to compare it to. It would seem logical to some, BUT the human body is a complicated thing, it could also have caused side effects, that we don't know about.

So if you ask me what the 'most effective dose' is, I don't know. How much CFTR function is needed to stop progression of CF? The scientists have not agreed on that yet, it is not known. For J 600mg Curcumin and 25mg of Genistein seem to have been very helpful in keeping him healthy! Of course a significant sweat test drop is an excellent marker of improved CFTR function. However, it may very well be that Curcumin and Genistein levels in lung tissue are higher than levels in the skin on the underarm. We don't know that.

There are too little facts, things we know for sure, to give advice on the 'most effective dose'. We have J's health that stands out, but we don't know how he would have done without the supplements. We know he had a significant drop in sweat chloride, that's a fact. We know his dose and we know which brand we use, that's a fact. But we don't know how those facts correlate to lung health exactly or to long term side effects, those are estimates and thoughts, not facts. Higher doses come with increased risk of unknown side effects. 

Am I 100% comfortable with the dose we are giving J? To be honest, no. I have doubts if we are doing the right thing. Of course I have. I THINK we are doing the right thing. I THINK giving him the supplements is better than letting CF progress and possibly causing irreversible damage. I am taking a chance, thinking the odds are in our favor.

Would I be 100% comfortable giving Kalydeco? That answer is 'no' to that as well. It's been on the market for a relatively short time. It has been trialled in a relatively very small group of patients. We don't know about long term side effects yet. And for Kalydeco I am taking into account that the manufacturer is making billions of dollars and would have good reason to try to hide possible long term side effects. So no, I am not 100% comfortable with that either. Same thing, I would be taking a chance, thinking the odds are in our favor.

Weighing pro's against cons, I think we are doing the right thing. But I wonder sometimes if we shouldn't go back to a lower dose, since I think it has shown to be effective enough in preventing damage to the lungs, without side effects. The 59mmol/L drop in sweat chloride has given us a clear answer that it is effective in increasing CFTR function. My question is, how much increase do we need to stay healthy with the lowest possible risk for unknown side effects in a 7 year old child?

I also think we should consider the age of the person trying Curcumin and Genistein and the state of the lungs when deciding on what dose to try. For very small children, whose bodies are developing, I would stay on a low dose (somewhere close to the starting dose). Their lungs probably need a small increase in CFTR function to prevent damage and/or infection (as has probably been the case with J). At the same time their developing bodies might be at a higher risk for unknown side effects.

On the other hand, for older patients, with more progressive lung disease and fully developed bodies, the risk for side effects seem smaller to me and at the same time I think they would need a larger increase in CFTR function. Why? Because they probably are dealing with scarred lung tissue and chronic bacterial infection(s). Scar tissue does not have CFTR in it. So the unscarred tissue has to compensate for it. Most older patients are chronically infected with bacteria as well. Probably one would benefit from a higher dose also when trying to eradicate infection (again weighing pro's and cons). On the other hand, higher doses also increase the risk of interference with other medications. Lowering the dose temporarily might be an option when on IV"s for example. On the other hand, Curcumin is known to have synergistic effects with many antibiotics without increasing blood levels. Weighing pro's and cons…..

Adult patients can 'feel' what Curcumin and Genistein are doing for them. Small children have to be observed very closely, since often they can't tell us what is going on on the inside….

To conclude, to me it feels like a balancing act on an invisible tightrope. But I'm thankful I have found the invisible rope and that there is a chance of making it across unharmed. I'm also thankful I am able to share it with others.

If there are any new developments or patterns emerging from people that are trying Curcumin and Genistein, I will post them on the blog.
(this post was last edited on March 21, 2014)

Please see the top right hand side for links to other pages or click here:
Our story
Why I started Curcumin and Genistein in the first place
How to start?
What to expect?
Early results
What else do we do/use?
CFTR and Genistein
Curcumin general info