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It is my understanding, with some CF patients (not all have GI issues) it is a normal CF thing, especially without miralax maintenance. The Doxy, in my case is to kill the overgrowth not maintenance. I determine need by smell and not the calendar. My guess is, the longer that the stool (or...
The Doxycyclin that I take is 50 mg tab - 2 on day 1 and 1 per day for 7 additional days, so only 8 days total. I only take it when my stool "really stinks". About once every three months seems to work. This has been very effective, for me, for several years. You might run that by his GI...
When we swallow mucus, even in our sleep, it eventually mixes with the stool and becomes a glue like substance. The stool then adheres to the walls of the colon and continues to build up upon itself. Therefore causing blockages, nausea, bloating and bacterial overgrowth. This is a product of...
Patti:
When I was first tested for CF mutations, in late 1990's there were only 250 known mutations. I only tested positive for Delta F508. Since that time, many new mutations have been discovered. There are almost 2000 known mutations. Depending upon when you were tested, a new test, a...
There are almost 2000 known CF mutations, any two will cause CF. A newborn screening is usually for the most common 32 mutations. A sweat test will help but I would ask for a FULL CF SEQUENCING.
He must be seen at an approved CF Center by a CF Specialist. A sweat test must be given at a CF...
This is a legal issue. If you think that he is interfering with her taking her medications, you may want to revisit his visitation rights. The court will not look favorably upon his putting her health at risk.
A letter from your lawyer, putting ex on notice, may be sufficient.
I have never tried to keep my CF a secret. Everyone knows that I take a large amount of pills when I eat and they all know why I cough.
It is very normal for someone to say "Hi Bill, how are you feeling". I appreciate their interest in my health.
Welchwitch, in the future, say something...
Jenny:
My second mutation (V562I) is very rare. This mutation means that my lung function is still pretty good. Most of my issues are below my lungs.
Mutations are important in treatment.
Bill
There are about 2000 known mutations. Given that it takes two mutations to cause CF, there are 4,000,000 possible combinations. Therefore 4 million different versions of CF. Allowing that, 70% of the CF population has at least one copy of the Delta F508 mutation, that means that there are...
I am 73 and obviously had CF for all of my life. I'm pretty well educated, with two college degrees. I am amazed by the people here who think treating CF is a Democracy, everyone gets a vote. It is not.
I do have long discussions with my CF Doctor about my treatments but he has the final...
Welcome to the world of CF. I have CF. I'm 73 years of age and in September, we celebtated our 51st Wedding Anniversary.
Now to your son. It is extremely important that he be seen by a CF Specialist at an Approved Cystic Center. Local Doctors are not qualified to treat Cystic Fibrosis,
I...
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