Gary Levin

Gary Levin started the topic Trikafta Side Effects in the forum Trikafta: Triple Combination CFTR Modulator 9 months, 3 weeks ago

My 32 year old son started the drug and his PFT went from 70% to over 90% in less than one week. He stopped coughing and also improved his activity level considerably. He is also a CF diabetes patient and was started on insulin. He gained 20 pounds over two months. He had some debilitating side effects, insomnia, involuntary leg jerking. He…[Read more]

Gary Levin replied to the topic Listening To Your Body: Has It Ever Lied? in the forum Adults With Cystic Fibrosis 11 months, 3 weeks ago

It is common for patients to be in denial. And the symptoms you have may change as different organs are affected by CF at different times. CF affects all the mucus glands, pancreas, sweat, intestines and even the colon. Ulcers develop from stress and cortisone levels go up during stress. Steroids commonly cause ulcers….Always listen to your…[Read more]

Bailey Vincent replied 11 months, 3 weeks ago

Thank you for this insight and support! I have definitely had ulcers over the years (one time, over 6 at once!) and all sorts of issues that I didn’t think “came with CF.” Currently, it’s actually my bone health and spine that are impacting me the most. It makes sense with all the coughing and degeneration, but in my mind… It seems so…[Read more]

Gary Levin replied to the topic Trikafta update in the forum Trikafta: Triple Combination CFTR Modulator 11 months, 3 weeks ago

My 30 year old son noticed an immediate improvement within 24 hours, his sputum was liquified and he spit out a lot of fluid. He felt so much better, and realized he had never breathed so easily, he stopped coughing almost immediately, and walks easily without shortness of breath. He did have some serious side effects, jerking, insomnia,…[Read more]

Gary Levin replied to the topic Just found out that our baby has CF in the forum Friends and Family of people with Cystic Fibrosis 1 year, 1 month ago

Ok Ashley. You and your husband are carriers, which means you each carry at least one 508 mutation. Each gene has two loci, one may be normal. The highest probability if you are both carriers is that your child wouldl have a probability of having CF is 50/50, the same as flipping a coin. So you have a good chance at having a perfectly normal…[Read more]

Gary Levin started the topic New Drug Treatment for drug resistant Mycobacterium in the forum CF Science and Research 2 years ago

Phage therapy is being used to treat drug-resistant mycobacterium in CF patients. A phage is a bacterial virus that injects it’s DNA into bacteria, which may modify its sensitivity to antibiotics.

https://www.sciencemag.org/news/2019/05/viruses-genetically-engineered-kill-bacteria-rescue-girl-antibiotic-resistant-infection

Gary Levin replied to the topic Interactions Between CF-associated Bacteria and Fungi Impact Each Other's Growth in the forum CF Science and Research 2 years, 2 months ago

In vitro studies of bacterial growth often reveal antibacterial activity of fungi. That is how Penicillin was discovered. This phenomenon dates back to Fleming in 1940 when he was growing staphylococcus and discovered a fungal contaminant on the plate. The areas surrounding fungal colonies had no staphylococcal growth. There may be other fungi…[Read more]