Early results

Early results

March 16, 2015
Someone asked me for an update on new developments and insights, which I thought was a very reasonable question, seeing that this blog has been up for over a year now.
First of all, there have been no real new developments and no new insights, but I'll write a little about how things seem to go in general anyway.
The information below I got from following people's comments on the use of Curc/Gen on Facebook. I collected the info by reading through all the threads and comments, looking for useful information and copy/pasting it into a notebook I started on my computer. One page per person, keeping track of mutations, weight, infections, brands of Curcumin or Genistein used, dosage etc. etc. It was an incredible amount of work and the Notebook got so big, it kept causing my computer to crash. Before sharing on the blog, I had to write a conclusion from their Notebook page and send it to the user for approval. It turned out to be too much work for me. We tried to find a better way of keeping track of Curc/Gen users on Facebook, but that had to be generated by the users themselves and didn't work.

Of course I still get excited when new people start trying and obviously I do read through their comments.
Clearly the effect of Curc/Gen depends on mutation. I have read a comment about a teenager with the G551D/delf508 mutations that was in the VX661/VX770 trial. During the trial, lung function went up (I believe it was around 20%), but as soon as they stopped the trial, LF went back down. So they tried Curc/Gen and lung function went back up again (again I believe around 20%). But that's the only patient with a gating mutation that I know of that has tried it (other than the S1251N patients in Holland). I don't know if the G551D/delF508 patient is still using Curc/Gen.

Among the double delF508 patients there are still people 'popping up' that are noticing definite improvements. The idea I have at the moment is, that there is definitely a sub-group of double delF508 patients with higher than average amounts of CFTR at the cell surface. My theory is, that these patients are the ones seeing improvements on Curc/Gen. They report weight gain, more energy, higher O2 saturation numbers, firmer stools, able to decrease Creon use, and mucus that is thinner and easier to cough up. A small increase in LF of 5% has also been reported.

My conclusion is the same as before. It's definitely worth a try! However, to be able to distinguish between efficacy of Curcumin or the combination of Curc/Gen, I've realised it's probably best to start with Curcumin only. Curcumin has many beneficial effects (anti-inflammatory, anti-oxidant a.o.). These effects are not dependent on CF mutations and are probably not related to CFTR function. To find out if the combination of Curc/Gen does anything positive to actual CFTR, I'd add Genistein about 2 weeks later to find out if it causes any additional improvements or not. If not, stick to just Curcumin. It will save you some money! :)

This blog has had over 30,000 page views by now. I'm sure there are way more people trying these supplements, but I hardly ever receive e-mails through the blog, unfortunately.

March 24, 2014
After posting news about the blog on FB last month, some more people have started taking Curcumin and Genistein.
Thanks to them giving me frequent and precise updates and information, I am now able to give you a small report.
I am happy (very happy!) that most are experiencing good effects from it. Most have noticed thinned mucus in the lungs and/or the nose, almost all within 24 hours!

The most surprising results are the ones with double delF508. I didn't expect Class 1 or 2 mutations would benefit from Curcumin and Genistein, but it seems to be doing something….not sure what, but I hope more people will try and we'll soon know more.


#1: child - 621 + 1 G>T
November 2013
Week 1: thinned mucus lungs and nose, firmer stools, on the verge of constipation. 
Week 2: upped dose, more thinned mucus, throat clearing, lowered enzymes. Cough drying up, increased appetite, pink cheeks, dark brown and firm stools. 
Week 3: weight gain.
March 2014
changing brands, going back and forth between diarrhea and constipation, lowering and upping enymes 
(my best advice in this case would be using a stool softener daily at the lowest Curc/Gen dose and going up on the dose of the stool softener when going up on the dose of Curc/Gen. Possibly adjusting enzymes at a later stage when situation is stable)


#2: child - 3849+10 kb C>T  - Pancreas Sufficient
November 2013
Week 1: thinned mucus lungs and nose, sweats first hours of the night, less salty. 
Week 2: less mucus from nose, cough getting less, sweating has stopped, coughed up dark plug, skin more beautiful. 
Week 3: upped the dose, skin rash, very wet cough restarting, rash disappeared. End of week 3: stopped coughing, started antibiotics because of PA culture, increased energy, weight gain 1kg.
March 2014
PA was eradicated with one course of antibiotics. Now cultures only Staph. Still has runny nose, with yellow mucus and cough probably caused by post nasal drip. No mucus in the lower respiratory tract. Current dose 3500mg Curcumin and 160mg Genistein.
"In the beginning I started to give the combo dissolved in hot milk and then cooled, unfortunately child complained that it burned the throat and disliked the taste of curcumin. So as not to risk getting complete denial I started to make the child swallow the whole capsule (4 times a day) and drinking chocolate milk."


#3: adult - delF508 and unknown mutation - Pancreas Sufficient. 
November 2013
Week 1: within 1/2 hour of first dose, upper airways clearing up, dose ratio first week not ideal, high Curc (2000mg), low Gen (8mg) (ratio 250:1) lungs feel heavy and full. 
Week 2: with each Genistein increase (towards 83mg) producing more sputum thicker and darker than usual. Can breath more deeply and chest feels lighter. Two loose stools, probably due to not enough fat in the meal. Improved mood, improved complexion. Slightly runny nose. 
16 G – 2000 C   1:125  not good

83 G – 2000 C   1:25   better

166 G – 3000 C   1:18   not good

125 G – 3000 C    1:24   better

125 G – 4500 C    1:36   fantastic

Patient reports: "Since starting on this dose (the last one) I have felt great.  Airway clearance is more effective and my energy levels are better. I feel fantastic.

March 2014

"...Just wanted to share some news with you all. I've been on the curc/gen combo since October and have been doing great on it. I had not had a cold or virus since starting it until about 2 - 3 weeks ago when I got a cold - coughing more, runny nose, feeling viral, headachy, sore throat - all the usual stuff.

But the very unusual thing about it is that I felt much better after about a week. No lasting exacerbation on my chest, cold symptoms disappeared within a week - amazing really. I did not take extra ABs, just continued with the usual stuff (plus the combo, of course). My energy levels took a bit longer to improve, but I have recovered very well. It feels great to be able to kick a virus into touch like non-cfers would.

"I've just come back in after playing football with my daughter in our backyard and I was the one who suggested we play! This would never have happened before the combo so you can get an idea of the huge difference it's made to my life already".

"Just wanted to share some fabulous news with you all. Next week I will have been taking the CG combo for five months. And in spite of currently suffering from an exacerbation (cold and chest infection), yesterday I had my best clinic visit in about 10 years!

I was doing an exercise test and ended up doing 3 pfts on two different machines. I got three very different figures(!), but all improved on 8 weeks ago, varying in improvement from 1% to 5 % depending on which reading you prefer. The 5% increase was after exercise and it was an FEV1 figure which I haven't achieved in years!
My exercise tolerance has improved by 25% since my last test 3 years ago and I achieved 90% of what an average person my age, height, gender would achieve. This is AMAZING for me and I just wanted to share my joy"

#4: child - G85E (= a Class II mutation, sometimes causing mild CF, low sweat chloride, but cultures PA)
November 2013
Week 1: Lot of clear mucus from the nose. It comes and goes. Wet cough turning into mucus in the throat. On and off raised body temperature (max 37,5C).
Week 2: Mom suspects viral/bacterial infection. Still runny nose, always clear mucus. Vomited mucus (clear). Child however seems more hydrated, stopped sweating a lot, less pee pee. Not feeling well, low appetite. Stopped supplements. Pediatrician says it's bronchitis, prescribes antibiotics. Unclear what the effects of the supplements were and what part was caused by bronchitis. 
March 2014:
" V has been doing VERY well and has been abx free for 3 months and a half...up until now when V got a kind of a flu that was also passed onto me (I hadn't been that sick in 15 years...) and V was about to start with a new bronchitis so is on ciproxin now. But I have to say, I think V's health has really improved overall, considering it's the first year in daycare. From January V started having colds again, but they never develop in a cough or anything else. Before Curc/Gen I would know that with a cold V would also get a cough and who knows what else!! I think this time was different cause V caught a really nasty virus circulating in school and I can tell you I NEVER get sick. I produced lots of mucus as well and I'm still coughing after more than 10 days! So I'm sure V would have gotten a bronchitis even without CF this time!! I have a sensation V is really different with the combo! V gained weight, is always energetic. Also V is now on colloidal silver (oral). Hope V will get rid of PA with all of these things! I have noticed that when V takes the combo in 3 or 4 doses it is better absorbed. When V goes to daycare I'm unable to give it in more than 2 doses and sometimes V has looser stools. V is now on 600 mg curcumin and 25 mg genistein. Weight is almost 14 kg."


#5: child - delF508/delF508 

November 2013
Week 1: wet cough, runny nose, less frequent and firmer stools, lowered enzymes. Lowered GC dose for fear of constipation, no more wet cough. Going back up on very low doses, slowly adding more. Her baseline cough has disappeared for a few days, without GC.
Week 2: Going up more and more on the dose, wet cough appears again, getting less towards the end of the week.
March 2014
Struggling to get constipation issues resolved. Going back and forth between diarrhea and constipation. Lowering dose, upping dose.*
(*my best advice in this case would be starting a stool softener in low dose daily at the lowest Curc/Gen dose and going up on the dose of the stool softener when going up on the dose of Curc/Gen. Possibly adjusting enzymes at a later stage when situation is stable. Unfortunately this child has had no weight gain so far. Also added high dose glutathione (65mg/kg/day) to daily supplements and I'm trying to find out if this could somehow interfere with Curc/Gen.) They have stopped all supplements for the time being...


#6: baby - delF508/delF508

November 2013
Week 1: No results at first. Not giving enough fat with food. Gave more fat, now loose stools. Upped enzymes. Wet cough and night sweats. Little weight gain. End of the week, more frequent wet cough, no runny nose.
Week 2: Stools good again. 
March 2104
Doing well. No hospital admissions or antibiotics since January. Now weighs 8,3kg (has gained 1,8kg/4lbs since November). Baby is starting to walk. They are very happy.

#7: adult - S1251N

November 2013
After having FEV1 of 70% for a year, and trying several antibiotics to get FEV1 back up, without results, patient on Curc/Gen. After a few weeks, FEV1 up from 70% to 90%!!
March 2014
no update available


#8: child - delF508/delF508
March 2014
"We are still going with our 'experiment' and it was looking like nothing was working. But since the post about the milk we have been doing it that way (about a week). Before he was just taking the capsules. The past two days we have had firm perfect stools that sink. Almost never seen in 10 years from him. He also seems to has more wetness when he coughs. He's not coughing but when he does it's looser sounding. We changed two things this past week. Always mixing Curc and Gen with very hot milk and drinking chocolate and changed the resveratrol dose*."
(*when using several different supplements at the same time, try not to change two things at the same time, as it will be difficult to figure out which one caused the effects.)


#9: teenager - delF508/c.3808delG frameshift - advanced liver disease
March 2014 
"About 10 days ago I had my daughter start the genistein/curcumin combo. She takes one of each twice a day. She immediately noticed an improvement in her bowel movements, decrease in enzyme use and by the next day she had a wet cough. We were excited until she went to clinic about 4 days after starting the combo. Her fev1 dropped by 12% and her lower airways dropped 30%!* She feels great, other than the wet cough that seems to be improving. She is energetic, and feels fine. She did say her lungs feel full or heavy. We ended up stopping the combo. Even after we increased her dose, her cough never got better and never got worse. She also complained of an oily face. She felt very heavy in her chest but not sick."
(*It seems that when starting Curcumin/Genistein, mucus thins and starts moving in the lungs. Extra chest physical therapy treatments could be desirable especially in the beginning. I'd suggest also to drink extra fluids in the beginning. Older users report increased but thinned sputum production at the start of using Curc/Gen, younger users present with a small 'wet cough'. This would be logical when CFTR function improves. With each dose increase, you'll notice the same effects, however these disappear once a new balance is reached in the lungs.)


#10: teenager - delF508/G542X - 42kg
March 2104 
"My son gets Curcumin and Genistein since 10 days. Today he had a FEV of 94%. For several months/years he only blew 74%. We didn't change anything else in his therapy. He is 13 years and has a delF508/G542x mutation. No weight gain but much more appetite. I can't believe that the combo made him blow a 20% higher FEV. I really don't know...
His energy level is getting higher though he only gets a low dose of the combo. The clinic repeated the FEV test 2 times because they also couldn't believe it.
He weights 42 kg (curcumin 2000mg/genistein 500mg). He also has a runny nose. That's new to us. I bought Turmeric Curcumin from the brand Puritan's Pride and Genistein Soy complex from Source Naturals. I just ordered it at amazon without thinking about which brand or what dose. Couldn't stand waiting for a Kalydeco combo. Oh sorry, 500mg isoflavone-rich Genistein. But things are changing and there is nothing else we change.
Serving size 2 tablets, 8mg -> 4mg per tablet. Puritane pride Curcumin 1 caps = 900 turmeric, 100mg curcumin (95%) 5mg bioperine."


#11: adult - between 40-50 yrs old - delF508/P67L - pancreas sufficient - late diagnosis
March 2014
"I started the Combo in Nov 2013 and after fifteen months of non stop IVs last year I'am doing much better since. You see I felt unwell on Stephen's day (Dec 26) and got through until now with out IVs and a course of Oral meds. However, I started IVs today. My main point is to let you know the combo shifted so much mucous within two hours. The first two weeks a lot came up and until now it's shifting. My Dr. told me on clinic examination yesterday, "wow your lungs sound so clear this is great".
I know it's down to the combo and I'm so thrilled. I am only doing one medication of IVs Septrin to help Ralistonia M to be shifted. This is a first."


#12: baby - delF508/delF508
March 2014 
"I started my DJ at 10/11 months on the curc/gen. He's been really healthy all along - PI only and he was having a lot of trouble gaining weight. I was living in terror of them bringing up the idea of a feeding tube. The curc/gen combo completely turned the corner for him on his weight gain. A few days ago, I linked to an album of pictures over the last year. The change from Sep to Nov, when we started the combo is amazing. He looks like a different little boy.
He's been on Planetary Herbals genistein powder and Vitacost curcumin c3 complex with bioperine since Oct/Nov 2013. Worked our way up to 10mg gen and approximately 170mg. (measuring is not precise when separating capsules into small bits). Both are given in warm goat's milk. Main benefit we've seen has been weight gain. 
I love what the curc/gen combo has done for DJ's weight gain. According to one online calculator, it looks like he is now at 48th percentile for weight, which is amazing! However, I am really struggling with the constipation side of things. (He was having trouble with constipation before curc/gen so I'm not blaming that.) Although he has ups and downs, it seems that the general trend has been moving toward more rather than less for him."


#14: baby - delF508/delF508 - 13kg
March 2014
"Taking Dr's Best Curcumin and Life Extension Super Absorbable Soy Isoflavones. At 625 mg curcumin and 28mg Genistein split into 2 - 3 doses in warm hemp milk with hot chocolate mix and about half a tsp of coconut oil.
He had a wet cough and a big clearing out of mucus from his nose. Less smelly poops and also darker and more firm. He's had more energy and rosey cheeks and has been able to fight off infection without antibiotics although we have used oregano oil and silver at the first sign if anything. We are so happy and hopeful about the results."


#15: teenager - delF508/delF508
Dr's Best Meriva Phytosome and Life Extension Super Absorbably Soy Isoflavones
March 2014 
"Hi Sam, just wanted to give you a one week update. I cannot believe this but we've had a 4 pound weight gain!!! And that was only off of 500mg of curc and 29mg of gen!!! Stools are firmer and gas is less. She is having more of a runny nose and coughing up more mucous. I am ecstatic!!! For her to gain weight was like asking for me to win the lottery 5 times in a row! It was not going to happen! BUT I checked and double checked and it is correct!  
Week 2 and she's up to 91.3 pounds!!!! So that makes 6.3 pound weight gain in 2 weeks.
Week 3 Daughter began at 85lbs and as of today is 92.4!!!!!" 


#17: adult - delF508/P67L
November 2013
"I can't tell you how happy I am about starting the Curc/Gen combo! I hate to be so excited - but in 2 days I can already tell a HUGE difference. I really can't believe there could be such a difference in a couple days but there truly IS. I have not felt as good as I do today in 6 months! I pray this kind of result continues." (Next day) "Well, I guess I spoke too soon because this afternoon I got severe stomach pains and a fever. I think I wasn't drinking enough water because my fingers were also shriveled. So I downed a bunch of water and am back on track. As for the differences I have noticed, pink cheeks, runny nose the first day but less runny than even normal today, my breathing is a lot better today than in the last 3 months! I have actually been off oxygen all day and totally forgot I didn't have it on! My energy is also better today for a change. Night sweats last night but still breathing better than usual…yippee"
February 2014
"I'm afraid I may not be getting enough fat with it and not getting the benefit that I should. I don't eat a diet high in fat at all and am practically a vegetarian. I actually DO feel better and I DO think it is working - I just want to make sure I am doing all I can for the max benefits."
"Since starting the curc/gen combo & glutathione, I have experienced such an improvement in my breathing and energy that I sat down and cried my eyes out the other day...just amazing."

(later that month) "I have been on oxygen 24/7 for 2-1/2 years with a FEV1 of 32%. After being on the curc/gen combo for just 2 months, I am already able to be OFF of oxygen during the daytime. I have more energy than I have had in 2 years and expect that I will continue to improve as I add other natural remedies to my lifestyle (like juicing). As I told you the other day, I actually sat down and cried my eyes out because I can't believe what a miracle this seems to be for me. I thought my life was over and I now have hope that I will get it back. I realized how well I was doing when I was doing a few things around the house and reached for my oxygen tubing to carry it so I didn't trip over it (as I have become accustomed to doing) and realized I wasn't wearing oxygen! When you don't even realize that you aren't on oxygen, it PROVES that you are doing better! I am so angry that no doctor has ever suggested this to me. I go to my pulmonologist next week and I can't wait to hear him tell me how well I am doing and after I get him to verify how much I have improved I will tell him why I am improving!"


#18: teenager - delF508/delF508 - 40kg

Effects in 24 hours runny nose, wet cough and feeling crappy
Last 2 weeks okay, runny nose is gone, cough has stayed.
Easier to cough up and can breath deeper. Peak flow higher than ever before.
Weight gain 1kg, but eating more fat than usual

Doctors best Curcumin 3500mg
Natures Aid Genistein 140mg


Thank you, everyone! for giving me feedback on how you are doing! With your invaluable information you are helping others find their way with Curc/Gen.

I am convinced there are way more people trying Curc/Gen than I know about, since one of the webstores I've posted a link to, was out of Genistein, so there must be a lot more out there somewhere, giving this a try. I would really really appreciate it if you would let me know how you are doing. Especially the adults, since they have a much better 'feel' for what's going on in their bodies.

Please feel free to send me an email at


Thank you so much for you help!

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

No comments:

Post a Comment