Search results

Whew! I was thinking about a broader audience when I was voicing concern over the impact of CF in raising children. Glad to hear this day went fine, just fifteen thousand to go. Which is the other part of my concern. CF is a battle fought by inches that could go for miles. Just raising average...

From everything you have said, everything is pointing at allergies. An easy naturpathic method of desensitizing a peron's allergies is through the purchase of local honey, purpose grown around the worst local plants, allergy speaking. Heathfood stores carry them everywhere I have been. As for...

triples15 Just curious, are you looking at the trials going on a NJH, (National Jewish Health) in Denver? LL

It is difficult to show no special concern when you are wired to be his ever present protector. Some of the best lessons I learned was how difficult it had been turning loose of me when those milestones toward independence passed. As hard as letting your little one out of your care, you must...

If risk of infection hides anywhere, confined space for long periods with infected people is probably the worst. The air in the campervan should have good fresh air circulation driving and when everybody has a chance to air their differences, and the campervan they do. Outside of that I would...

A lot depends on how much dried up mucus is produced each day. Times I have been fighting an infection might take an eye watering potion. Daily maintenance with a tepid salt solution disolves salty mucus, and kills pathogens on contact. It also toughens the mucusal lining. That is my experience...

The excitement building up to a new school year is challenging for parents and kids. I am not sure which of you really has a stomach bug, you both have the jitters. Some people, like me, have missed nearly every first day of school, hurled back stage before every speech or presentation and...

Melissa, I was looking for a more elegant term myself, but it is a really important landmark. If you imagine pushing your fingers through the front of your pectoral muscle toward your armpit, the painful sensation is showing exactly where the brachial plexus is located. This is one of those...

Kalydeco is a little like the first effective antibiotic. It is the ultimate gateway drug to a new family of drugs, genetic drugs. Vertex isn't resting on its heels, before Kalydeco saw human trials, other CF mutations were being researched and still are. The reason the third most common CFTR...

This can become its own problem but I have used oxymetazoline nasal spray (Afrin) almost forty years, contrary to all the warnings never to try it. It is very easy to fall for the sudden dilation and drying of mucus membranes Afrin's generic moisturizing spray is the best way to go if you try...

Melissa75, I don't know if I helped with your medical mystery but it is a great way of dealing with the constant undertow of CF issues, real and imaginary. For me, knowing and understanding is my defense against the fear of not knowing. I wonder if "axia" might be short for ataxia. Like the...

Melissa75, After I responded to your post I got to thinking about referred pain to the "tailor mark" specific to the right shoulder. The embryonic ties are right shoulder to the diaphram and some strong nerve connections pass between them in most people. A lot of compromised organs surround the...

Thanks Bill. I have some wonderful PMs that warm my cockles. LL

I can't name that pain, but it sounds like symptoms of thorasic outlet syndrome. With emphasis on the "like" part of it all, the nerves exit the cervical vertebrae, those making up your neck, pass between the scapula and the ribs and just under your shoulder to the bracial plexus and down your...

JFLEM, Thanks so much for the update. Great detective work in tracking down a potential culprit. Reading pharmaceutical data sheets isn't exactly easy but understanding the side effects and the side effects statistical charts is critical in my book. I realize this hasn't completely played out...

Any luck finding out the source or solution to your extreme dizziness? LL

All late diagnosed CFers had to work within the means of regular doctors. My CF issues seem to have taken turns at being critical to manage. Little difference in treatment is available for most CF issues, malnutrition being one exception since it is rarely suspected. My ENT does ENT jobs, my...

If a contest were held to fritter away at one missed diagnosis after another, myofascial pain diagnosis and treatment is right up there. With a hunch back, or kyphosis, being a hallmark of the CF stereotype, so much back pain has to do with the battle up close to the spine, presumably inflaming...

I can appreciate privacy, but so far every post looking for a CF center or a new one, won't say where they are. It may be access to an airport or a LLC focusing on CF, but people have to know where to span out from, like your town and zipcode. I am sorry about your hassles and frutration, like...

The blood pressure/blood oxygenation suggestion sounds like a possibility. An EKG could reveal any problem with the heart function, maybe off due to infection. The sinuses can harbor enormous colonies of infection. Waves of dizziness and other "wave" phenomena like nause, flushing and sweating...