@gmlevinmdgmail-com
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Gary Levin started the topic Trikafta Side Effects in the forum Trikafta: Triple Combination CFTR Modulator 1 year 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]
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Gary Levin and
Jenny Livingston are now friends 1 year, 2 months ago
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Gary Levin replied to the topic Listening To Your Body: Has It Ever Lied? in the forum Adults With Cystic Fibrosis 1 year, 2 months 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]
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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]
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Gary Levin replied to the topic Trikafta update in the forum Trikafta: Triple Combination CFTR Modulator 1 year, 2 months 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]
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Gary Levin posted an update 1 year, 2 months ago
The new combination drugs have increased my son’s PFT to almost 90% and he no longer coughs at night or upon awakening. He senses he can breathe much better. However taking the recommended doses results in some side effects, such as insomnia, hypnogaguic twitching (feet jerking, which awakens. him and severe fatigue. He had to discontinue the…[Read more]
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Gary, how cool that your son’s PFTs have increased so much! How long has he been on Trikafta? I’ve been taking it since November, and I also experienced some negative side effects. Insomnia was a BIG one for me! It eventually subsided after about 5 months — it was definitely exhausting and made for some very unproductive, fatigue-filled…
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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, 3 months 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]
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Gary Levin posted an update 1 year, 9 months ago
@jennifer-livingston My son is 32. He recently started Trifakta. It has made his breathing much better. He is having insomnia and sleeping poorly. He feels llike he is not rested in the A.M. He is also having side effects similar to Ciprofloxacin
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Gary Levin started the topic New Drug Treatment for drug resistant Mycobacterium in the forum CF Science and Research 2 years, 2 months 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.
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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, 5 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]
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Gary Levin became a registered member 2 years, 5 months ago
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Hey Gary! How are you? I’m Luisa and I am a forum moderator here along with @trelarosa have CF, and I am 25. How are you doing — I see that your son has CF? How is he?
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Jenny Livingston
