Why I started Curcumin and Genistein in the first place

When J was born, in stead of breast feeding we had to switch to formula (=powdered baby milk) after about 5 weeks due to complications from the C-section and massive amounts of antibiotics for me.  He was doing fine, weighed 8 kilos (17lbs.), till about 6 months old, when we changed to a different formula. He got sick: diarrhea, throwing up, many colds, sniffles etc. Doctors prescribed asthma meds and allergy meds. He started losing weight. 

When he was a year old, (he was finally back to weighing 8 kilos again), I tried Soy Formula and he gained 2 kilos (4.4lbs) in one month. His airways cleared up, he was doing great again. I was able to stop all asthma and allergy medications. Suspecting food allergy (cow’s milk?) I was slow in adding regular foods. Probably when we substituted his soy milk for regular foods more and more, is when he started producing strange looking diapers (oily stools). Orange spots and weird looking stools. When looking that up on the internet I found CF coming up way too much for my taste. This led me to visit the pediatrician and he took a blood sample to have it tested for CF mutations and did a stool test for Giardia infection (which can also cause malabsorption). Before the blood test results came back, I was relieved to hear he had a Giardia infection, thinking it was not CF. However, a few weeks later, when visiting the pediatrician’s office again to check if the Giardia infection had cleared, he had received the test results for the CF mutations. Only one mutation showed up on that test (delF508) and the advice was: if no clinical presentation of CF it wasn’t necessary to do further testing. In the meantime I had read up on CF and still wasn’t sure he didn’t have it. He tasted very salty. Sweat crystals were in his side burns after playing (we lived in Aruba at that time, and it is extremely hot there). It looked like sand, but it were salt crystals. The pediatrician thought it wasn’t necessary to do further testing, but I wasn’t sure… Since a sweat test cannot be done in Aruba, we made an appointment in Miami Children’s Hospital. And that’s where we heard J had CF.

So what stood out in that history was the time J was on soy formula….(Nutrilon brand). I wondered what was in there that had made him gain so much weight and kept him healthy. When I read about Genistein and CF, it was pretty clear to me that that must have been what had been working for him, and that’s why I started giving Genistein.

I did also try to find out why he was okay the first 6 months. He was on Nestle Good Start at that time (my husband chose that one because the can looked nice!), but I have never been able to find out why J was doing well on that particular formula.

When researching CF, I pretty soon bumped into the possible benefits of Curcumin for CF. Noticing it was considered a very safe supplement, I started giving it to him hoping it would help him somehow and thinking if it wouldn’t help, at least it wouldn’t hurt.

Every day he got his Curcumin, we  mixed it through the applesauce with which we give enzymes. He did not love the taste of it. One day he fell himself a concussion. He felt really bad (poor kid) and didn’t want his orange applesauce, so I had to give enzymes without it. The next day he had horrible diarrhea. They said it could have been from the concussion, so I wasn’t sure it was because of not giving Curcumin.

However in the summer of 2012, the Curcumin manufacturer changed the packaging and without noticing, I’d ordered the wrong Curcumin (without piperine). J’s stools were bad…. We didn’t know what was going on…. Trying all kinds of different things for weeks without results, even going up on Creon didn’t help and we ended up giving a second capsule of Curcumin and stools improved. One morning three months later (I know… embarrassing!) it finally hit me…. Staring at the bottle I suddenly noticed: we had been using Curcumin WITHOUT piperine…!
As soon as we went back to using Curcumin WITH piperine, things improved tremendously! Now feeling sure it was doing great things for him we stuck to 2 capsules a day. He did develop a cough during that time…. A wet cough…. Which had me panicked, because the last time he had had a cough like that it was a Pseudomonas infection… We waited it out a little, but ended up giving antibiotics after 2 or 3 weeks of coughing and the cough cleared. Don’t know if it was a coincidence in timing of things, or if he did actually pick up something bad during the months he wasn’t using Curcumin with piperine, but when other users of Curcumin & Genistein started reporting a wet cough, I remembered what happened with J….

Of course we now know that with every dose increase we hear that ‘typical wet cough’. Probably caused by better hydration of the lungs and lungs ‘settling into a new balance’ of better functioning CFTR. We now also know that the ‘wet cough’ disappears after a few days or weeks, depending on the amount with which the supplements are increased, or the amount of ‘old mucus’ that has to be cleared from the lungs.

So that is how I knew for sure both supplements were working. I did not realize about the synergistic potentiating effect. I did read the particular full article by TC Hwang when it was first published…. I was excited finding something to back up what we saw happening in real life. Coincidently, it was published in the European Journal of Cystic Fibrosis, the only CF journal I had a subscription to.

Of course that was about the G551D mutation and not S1251N. But by that time I had done enough research on S1251N to know that the defect in both mutations was very similar and that it was likely that whatever could fix G551D would work for S1251N as well.

That’s also the article I remembered reading when J’s cells were tested with Curcumin and Genistein and that’s how we knew what we were seeing in those ‘ex vivo’ tests.

That’s how this all started….

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


  1. Hello Sam, Thank you very much for your work! I'd like to ask: Doesn't curcumin leave an unpleasant taste in the mouth for the whole day?

  2. He doesn't complain about it, so I guess he's okay with it. Also he eats right after taking it (with applesauce), or it's mixed into his food. It's actually a good thing to have some Curcumin in the mouth and throat. It's antibacterial/anti-inflammatory and prevents bacteria from attaching to the gums and teeth. It's recommended for people with gingivitis to do a mouth rinse/wash with Curcumin. For example: http://www.ncbi.nlm.nih.gov/pubmed/23507685

  3. Interesting stuff. My sons cf showed right away. I only know one mutation of his which is delta f508. My daughter also. I wish I would have understood more as he was struggling so much as a baby, then teen etc. He passed away nov 2008, complications of pulmonary hypertension while in hospital . He was 17.. He was in transplant evaluations at the time. Anyway, we didn't have all this info from cf groups and people who did other treatments besides "conventional meds". Long story....I guess we could write books about our cf kids.

    1. I'm sorry to hear about your son, Rhonda. Indeed the internet has been incredibly valuable for myself and others involved with CF. By sharing our experiences through Facebook, internet groups and blogs we can all help each other.

  4. Hello, im double delta f508. I starting taking curcumin when I coughed up blood and did notice it helped. Recently, i started making soy protein shakes and put tumeric spice in it. Didnt notice much of a difference. Im 30 years old and my lung function is decreasing mildly. From 76 to 73 percent in less than a year. I also just cultured psudo for the first time. I have been culturing staph, mac, and aspergillus. My weight is good, no problems with that but I have extreme joint pain, cough up blood often and I can feel my lung function decreasing and Im scared. I ordered liquid curcumin and the pill genestin. Can I add these to my vegan soy protein shake with some black pepper? I also put thing like vitamin C in the shake and other goodies. Is that the best way to do this?

    1. I'm sorry to hear you lung function is decreasing, but you're looking into what you can do to preserve it, so be proud of yourself for that. First of all, be careful if you are prone to lung bleeds as Curcumin can work as a blood thinner. So I would go easy on the dose and stop or lower the dose if you notice increased bleeding. You can add Curc or Gen to anything really, but you have to take it with a good amount of fat, or it won't be absorbed into the blood and won't reach the lungs. Both compounds are fat soluble, first they dissolve in fat and then they can be absorbed. If there is no fat in your intestine, it can't dissolve and will end up in the toilet. So make sure you take it with fat (5 to 10 grams of fat each time). Heat increases absorption of Curcumin, so it will work better if you mix it through anything hot (soup, milk etc.). What type of Curcumin did you buy? If you give me the name and brand, I will check for you if it's a good one. Or check the 'how to start' page for recommendations on products. that have proven to work for others. If you are on Facebook, there is a group called DearCF that discusses lots of integrative treatments to support health for people with CF.

  5. Im double delta f508 and 30 years old. Lung function is starting to decrease at an increased acceleration. I ordered liquid curcumin and genestein. Can i put this in my vegan soy milk protein shake along with black pepper?