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can someone relate to this?

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Old 01-10-2006, 09:01 AM   #1
matt's mom
Join Date: Jan 2006
Posts: 84
matt's mom HB User
can someone offer advice or help me?

Hi Everyone,
I am new and was wondering if anyone can help me get some information. My son who is seven has had chronic sinus infections, ear infections and pnuemonias. He has had two negative sweat tests and his genetic testing came back negative but with three polymorphisms testing positive one of them being m470v in 7t. I hope I am writing this correctly. I can not get a doctor to help me. They keep passing us from doctor to doctor-ENT, gastro and immune. He does have reflux and gas issues. He has had sinus surgery and his sinuses are clogged up less than a year later. He is constantly sick he just finished a round of cipro antibiotics-3 weeks on and he is showing signs of getting sick again. Does anyone have this experience ? Any advice?
Thanks- Matt's mom

Last edited by matt's mom; 01-12-2006 at 11:43 AM.

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Old 02-07-2006, 05:54 PM   #2
Sayer Ji
Join Date: Feb 2006
Location: Bonita Springs, FL
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Re: can someone relate to this?

Did any of your doctors ever describe to you the "side effects" of antibiotic therapy? Namely, chronic reinfection caused by the compromised immune system these drugs cause. Probiotic therapy is a necessary follow up, with the addition of natural broad spectrum anti-microbial supplements: collodial silver, manuka honey, oil of oregano, again: probiotics or good bacteria, and the removal of immuno-suppressive non-foods such as dairy, wheat, non-fermented soy, and gentically altered corn. Even when you find these products in their whole, or unprocessed form, they have probably either been sprayed with chemicals, grown in dimineralized or sewage ammended soil, or worst of all: irradiated with nuclear waste (an FDA approved and promoted process since 1963).

Old 02-08-2006, 07:01 AM   #3
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Location: Midwest
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Ratatosk HB UserRatatosk HB User
Re: can someone relate to this?

I'd try to get an appointment with an accredited CF facility. Or go to a children's hospital in a larger city where there are more specialists. Could be something as simple as not using the correct antibiotic -- that the cipro is resistant to the bug that your child is culturing.

DS is on antibiotics as prescribed by an infectious disease expert. I wouldn't suggest throwing a bunch of holistic vitamins, etc, at him 'cuz they could have adverse affections.

Old 02-10-2006, 08:50 AM   #4
matt's mom
Join Date: Jan 2006
Posts: 84
matt's mom HB User
Does climate make a difference incf patients?

Thank you so much for your help. My husband and I are thinking of going down to North Carolina. They say there is a cf center there. Does anyone have information on how the climate effects people with cf? Is it better to live in a certain area?
Thanks- Matt's mom

Old 02-11-2006, 09:15 AM   #5
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Location: Bullard, TX
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BYHOPE1113 HB User
Re: can someone relate to this?

My 3 year old daughter also tested negative for CF but positive for the polymorphism M470v on both genes. I'd be happy to answer any questions you might have. There is another thread on healthboards where I have talked alot about her health issues. I'll post the link and you might find some of the information there familiar to you experiences. This is actually on the asthma board because that was the final diagnosis for my daughter.

Moderate-severe asthma
Homozygous (meaning two) for M470V

Basically she was treated the same as a CF patient would be, due to her symptoms. Our doctor was a CF/Asthma Specialist. Karly actually started getting better after taking Cipro, but they tested all sorts of drugs in the lab to determine exactly what antibiotic would kill the bacteria she had.


Old 02-13-2006, 08:41 AM   #6
matt's mom
Join Date: Jan 2006
Posts: 84
matt's mom HB User
Re: can someone relate to this?

Thank yo so much. I am going to the website now. I am so glad to have someone to help me. I will read your posts and then probably have many questions to ask or just may need some support. I feel so alone sometimes.

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