Making a Splash in Cystic Fibrosis Research!

CF Carrier Experience

I do not have CF, I’m a carrier of dF508 mutation, aged 64, with mild non-specific auto-immune disease (subclinical hypothyroid, Raynaud’s phenomenon, joint & muscle pain, fatigue, elevated ANA), as well as possible CF carrier symptoms (salty sweat, sinus problems, etc, but I have never been properly assessed for this, as no doctor has been interested or willing to do it). I also have an MTHFR mutation. MTHFR stands for methylene-tetrahydrofolate reductase, which is an enzyme that converts folate you eat into the active form (5-Methyltetrahydrofolate). It is hereditary, but none of my kids have been tested for it (yet), and I take a special formulation of B vitamins and others to overcome this. Other than all of that, my general bloods are classically normal.
More info here: http://www.mthfrsupport.com.au/what-is-mthfr/

My first thought was to take Indrepta (and NAC – see below) in parallel with my daughter, so we could be “meds buddies” and have extra info in case of any side effects, whether positive or negative. Then I realised, in online chat with Nell, that my health might also benefit. And today it occurs to me that one way of supporting Sharktank’s production of Indrepta (and other projected supplements such as NAC) would be to make it available to a wider market – at least some time down the track – since the polyphenols it contains all have general health benefits beyond those specific to CF, and medical science will eventually catch up with this!

At this stage, I’ve only been on 1 capsule of Indrepta A per day, with breakfast, for 6 days. So there’s not a lot to report yet, except that, for the first 3 days I felt very tired, slightly light-headed (low blood pressure? I don’t know), and had sinus congestion and a persistent headache. All of that has cleared now, and I feel normal (i.e., no different to before taking Indrepta). The other thing to note is that I’ve been passing more urine. Not more frequently, just more volume each time. That made me think the headache and fatigue may have been due to some dehydration, so I upped my intake of water as of Day 2. Or it could be that all of it, headache, sinuses, fatigue, extra urination, might be effects of mild detox. I’d be interested to know your thoughts on this, and to read of others’ experiences. After a week on 1 cap a day, I will add 1 per night to the regime for a week, and so on as the weeks progress. I may alternate the A and B versions, either daily, weekly, or monthly, depending on what my daughter decides to do. As you can see I am doing this very slowly. As I don’t have CF, I may not end up taking the full dose of 9 per day, although I may try it for a month, just to see if there are any effects, positive or negative, to this kind of dose, independent of CF status.

Prior to starting Indrepta, I was taking curcumin with piperine, multi-B vitamins, Zinc, Magnesium, and bio-identical HRT (progesterone & estrogen). All pharmaceutical grade. I have now stopped the curc/piperine, as this is in Indrepta, but am continuing with the other supplements, as the combination has been working well for me. I also plan to try NAC (effervescent tabs), both for my own health and also as a “meds buddy” to my daughter, although I may not need as high a dose as her.

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