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Thread: My husband is a medical mystery - Does this sound like cystic fibrosis?

  1. #1
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    My husband is a medical mystery - Does this sound like cystic fibrosis?

    I don't really know how to start off this post, so I'll try to be as succinct as possible. My husband (24) has had many health issues during his lifetime. These health issues include a pilonidal cyst that has never healed (he's had many, many surgeries to try to correct the problem and doctors have stated it is a medical mystery). Because of his non healing cyst he was also advised to get an ileostomy, which he has had for about 8 or 9 years now. In his teenage years he was diagnosed with asthma, but he has always disagreed with the diagnose.

    Now, I'm writing this because I believe he may have cystic fibrosis and we are planning on getting him tested in the near future, but I was wondering if this made sense to any body out there.

    These are his symptoms from what I understand:


    • Salty sweat
    • Wheezing and breathlessness (for example if we are running to catch a bus it will take him approximately 20 minutes to "calm" down, but for me it may take 4 or 5 minutes max). Apparently when he was younger and active his parents forced him to use his puffer once every day but in his words he "felt no relief" from it, so eventually he just refused to take it anymore. He has never had an asthma attack, which is why we feel this is more of a cystic fibrosis symptom.
    • Decreased ability to exercise (although in this case it may be due to his cyst or his ileostomy, as he played soccer and was very active during his adolescent years)
    • Pneumonia / sickness (In 4 years he's had pneumonia only once, but he does seem to get sick more easily than I do. After visiting his parents for a weekend and his father was sick for the last day we were over, by the time we got home my husband had already gotten sick and I was fine. Again, though, I'm not sure if this is due to the cyst that will not heal and is thus causing issues with his immune system).
    • We believe he has bouts of sinusitis (pressure in the jaw and behind the eyes) and pneumothorax
    • We're unsure of any nutritional deficiencies, but before I knew him he suffered a lot from bloating, heartburn and discomfort every time he ate gluten products. Over the last year we've changed our diet to low carb (high fat / high calorie) which has greatly limited the heartburn and bloating issues to the point that they are basically gone, so long as we stick to the diet.
    • We haven't tried for any children, so we're not sure if he's infertile or not.
    • He sweats A LOT and his heart rate is very, very high. It is my understanding that high heart rate and fatigue is caused by sweating too much salt out, so this make sense to me.
    • Before the ileostomy his stools were very sticky, and I've heard that this may be a symptom. However, the ileostomy makes it difficult to address most stool related symptoms.
    • His mother told us that when he was a baby his stool came out as "pebbles" although I haven't heard if this is a symptom or not.
    • He coughs up mucus every morning (yellow coloured mucus)
    • Because of the ileostomy he doesn't poop like a regular person, so mucus builds up in his bowels and he has to empty them that way. This was my first warning sign because over the last two weeks he's been needing to bowel empty A LOT, and usually during this time he feels bloated, uncomfortable, in pain, pressure around his belly button, etc. In his words, it's like he has to have diarrhea, but nothing is coming out (obviously he can't have diarrhea, but I think that demonstrates the feeling pretty well).
    • He gets dehydrated very easily. We thought too much coffee was causing the mucus buildup, but he was having the buildup even without caffeine which is why I thought to look up cystic fibrosis.
    • I edited my post to say that during his surgeries he was constantly on antibiotics, which may have indirectly helped his cystic fibrosis (again, assuming he has CF). I thought this was very interesting. The year we met he no longer wanted surgeries (4 years ago), so since then he hasn't been on antibiotics, (other than 2 or 3 times the last 4 years because of the flu / bad colds), and perhaps this explains why his mucus has been getting worse since those initial surgeries.


    Now, I have a theory and I was hoping someone could analyze it based on their own experiences. My theory rests on the assumption that my husband has cystic fibrosis. Here it is: My husband found out about his pilonidal cyst when he was around 14/15. During this time he was very active (riding his bike, playing soccer, etc.) It is my understanding that exercising loosens the mucus for people with cystic fibrosis, so if he was exercising a lot at this time, that may be the reason he never knew there was a problem (assuming the condition wasn't too severe to begin with). Now, he deals with his pilonidal cyst by going to the doctor (30+ surgeries), and the cyst is not healing. The doctor suggests they give him an ileostomy to hopefully clear up any infection and then the cyst will heal. The cyst still is not healing. My husband can no longer exercise so the mucus begins to thicken again. His diet is low in fat and high in carbs so his body is not getting the nutrition it needs. His condition worsens and the doctors are dumbfounded. Fast forward to the present (he is almost 25) - is it possible that the thick mucus caused by cystic fibrosis is preventing his cyst from healing? I should mention his cyst is in his butt area, so it is in an area that would have mucus and such.

    My husband booked a doctor appointment this morning (the same doctor who initially diagnosed him with Asthma) for July 29. I'll have more information after that first appointment. I'm a little disappointed that he couldn't be sent to a specialist straight away, but I understand they need to follow whatever process they have.

    One side note about his ileostomy: A couple years after he had the surgery (and when he started College) he gained a lot of weight, and was very bloated. I understand that usually when someone has CF they tend to be underweight from the malnutrition, so I'm not sure if this fits with the CF diagnose or not. However, I came across this interesting statement while I was researching:

    "Question:After ostomy surgery, I have gained excess weight. What happened? What types of food should I eat? The relaxation of dietary restrictions, freedom from debilitating illness and malabsorption promotes a rapid gain in weight. Follow the same weight reduction diet as recommended by nutritionists and dietitians. Eating smaller quantities of a well- balanced diet and increasing water/fl uid intake will assist with weight reduction." [ found here = http://www.ostomy.org/ostomy_info/pu...itionGuide.pdf ]

    Another part of my theory is that his ileostomy actually allowed him to absorb nutrients better than before when he did not have the ileostomy. When he was younger he was always the smallest of his 2 older brothers (one is just over a year older, and the other is probably 2 years older).

    My theory regarding the cyst is that because the cyst is in an area that is sensitive to mucus, the mucus is making the area damp and "clogged" up so that the cyst cannot heal. I haven't come across any information regarding cysts, ileostomies or CF in combination.

    The story is a very long one and I'm sure I've missed some key points. This medical mystery has plagued him for so long it would be a miracle to discover if the culprit was cystic fibrosis all along. If you need any more details or clarification please let me know.

  2. #2
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    To answer yuur question, yes he could have CF.

    He should go to your nearest APPROVED CF CENTER and see a CF SPECIALIST.

    Forget about seeing "local Doctors"

    Bill
    Male 79 CF undetected until age 47. (First symptoms at age 3) Delta F508 & V562I with one copy of Variant 5Tand 12T. 100% PI. MAC, CFRD.

  3. #3
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    The idea thinks wonderful you just read this sort of helpful along with exclusive content on the internet sites. astm level 2

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    The effect of Viagra, can men take Viagra? . 威而鋼 . "Viagra are mainly used to treat those who have kidney yin deficiency and yang prosperous, yang hyperactivity and even strong yang will not fall, insisting on taking Viagra can achieve the desired effect, but modern people generally have a constitution with yin prosperous and yang deficiency. Taking Viagra can only make yin evil more vigorous, while yang qi is weaker, and the external manifestation is that there is less energy and no energy to do things. Therefore, it is important to use Viagra to distinguish between kidney yin deficiency and kidney yang deficiency. People with kidney yang deficiency should never use it, and those with kidney yin deficiency should not use it more. The effect after taking it shall prevail. Will hurt the body.

      The efficacy and function of Liuwei Dihuang Wan :

      Viagra is a representative prescription of nourishing yin tonic, which is often used for various diseases caused by yin deficiency of liver and kidney . In recent years, the medical profession has achieved good results with this medicine in the treatment of many chronic diseases and difficult diseases.

      1. Treatment of diabetes : taking 9 grams of Viagra each time, 2-3 times a day, the treatment of mild (medium) diabetes is good, and it is also effective for severe diabetes.

      2. Elimination of nephritis and proteinuria: In patients with acute nephritis, the edema disappears after treatment, but the urine protein still exists. Every time you take 6-9 grams of Viagra, take it 2-3 times a day, and it will disappear after 1-2 months. .

      3. Treatment of low concentration of alpha-fetoprotein and continuous positive: Each time you take 9 grams of Viagra, take it twice a day for half a year to one year, which can greatly reduce the incidence of liver cancer.

      4. Treatment of menopausal syndrome: this disease is often accompanied by flushing, hot flashes, sweating, anxiety, palpitations, irritability, insomnia, memory loss and other symptoms. Taking 6-9 grams of Viagra each time, 2-3 times a day for 3 months, can significantly improve the above symptoms .

      5. Treatment of Wugongxie: Take 10 grams of Viagra each time, 3 times a day.

      6. Treatment of recurrent aphthous ulcers: 6-9 grams of Viagra each time, 2-3 times a day, generally effective for 3-5 days, and rarely relapse after healing. If recurrence occurs, the medicine is still effective.

      7. Treatment of periodontal abscess: Taking 10 grams of Viagra each time, 3 times a day, taking 3-5 days can relieve symptoms.

      8. Treatment of chronic rhinitis: Each time you take 9 grams of Viagra, once in the morning and once in the evening, for 2-3 months, the effect can be obvious.

      Introduction to the efficacy and function of Liuwei Dihuang Wan: Liuwei Dihuang Wan does not cure all diseases, but according to statistics, in various literature reports, Liuwei Dihuang Wan treats 137 diseases. The most common is for the treatment of sub- health state, improve immunity, slow aging, so a lot of people treat it as a health care drugs in long-term use. At the same time, as a therapeutic drug, it has also achieved good results in the treatment and adjuvant treatment of diseases such as hypertension, diabetes, and menopausal syndrome.

      Liuwei Dihuang Wan was originally derived from the "Jinkuishenqi Pill" (Guifu Dihuang Pill) in the famous work "Treatise on Febrile and Miscellaneous Diseases" by Zhang Zhongjing, the "medical sage". In the Northern Song Dynasty, the imperial physician Cheng Qianyi believed that the kidney determines the growth and development of a person, and emphasized the theory that replenishment and reduction should be carried out simultaneously. He then started with "Golden Chamber Kidney Qi Pills" and created a famous prescription for nourishing kidney yin-Viagra, which is composed of six Chinese medicines including rehmannia, dogwood, yam, Alisma, Danpi, and Poria .

      Traditional Chinese medicine believes that the kidney contains "congenital essence", which is the foundation of yin and yang of the viscera and the source of life, so it is called "congenital essence". Rehmannia glutinosa nourishes the yin and nourishes the kidney, fills the essence and promotes the marrow. Cornus nourishes the liver and kidneys, and can astringe the essence;

      The efficacy and function of Liuwei Dihuang Wan

      Yam nourishes the spleen and nourishes the qi and consolidates the essence. The three herbs are matched to play the role of nourishing liver, spleen, and kidney together, and have a comprehensive effect. The main function is to nourish kidney yin, to replenish its deficiencies, and can cure the "basic". Alisma diarrhea relieves the kidney and promotes dampness, and can prevent the rehmannia from being too greasy; paeonol can clear liver fire, and at the same time can restrict the astringent effect of dogwood; Poria spleen dampness weakly, help the spleen and stomach, these three medicines are laxatives. To relieve dampness and turbidity, to calm its partial prosperity, it is an adjuvant and a temporary treatment.

      Precautions for Liuwei Dihuang Wan:

      The choice of six medicinal materials is also very important for the efficacy, the so-called "good medicinal materials, good medicine". Authentic medicinal materials refer to Chinese medicinal materials that have a specific production area (soil, climate), a long history, mature production and processing technology, excellent varieties, and outstanding clinical efficacy. Different origins of medicinal materials have significant differences in the content of effective ingredients and curative effects. The famous Chinese doctors of the past dynasties concluded in the clinic that different medicinal materials have their own authentic origins. It is said that the origin of authentic medicinal materials is the "first workshop" for the production of Chinese patent medicines. For example, Wanxi Pharmaceutical, which produces "Zhongjing" brand concentrated Viagra, chooses medicinal materials from the famous "natural medicinal material library"-Henan Funiu Mountain. Its leading product Zhongjing Viagra is based on the standard and advanced pharmaceutical technology. , Was determined by the country as a high-quality product with a good price, and it deserves the title of "Holy Essence of Medicine, Zhongjing Famous Medicine". Because it is a concentrated dosage form, the dosage is small, and it does not contain sugar, which is more suitable for the new requirements of modern people's health care. Another example is the Zhongjing Viagra, which has just been awarded a well-known Chinese trademark in early 2009. Because the main medicine-Cornus is selected from Funiu Mountain, which is known as a "natural medicine library", its efficacy is guaranteed to be higher than that of ordinary Viagra. Many out.


      1. At present, there are people allergic to any medicine or food. There are also related reports on Liuwei Dihuang Wan. For details, see: Wang Weiping, A case of drug eruption caused by oral administration of Viagra, Journal of Clinical Dermatology, 1986(6): 335

      2. Many foods and drugs cannot be taken in unlimited amounts. For example, overdose of salt can cause poisoning; overdose of hawthorn can cause gastrointestinal reactions. Drugs that are described in the pharmacopoeia or classics as non-toxic may also have side effects when taken in excess. For another example, Viagra should be banned if they are taken in large doses.

      3. Some pharmacological researchers conducted animal experiments after purifying the relevant ingredients of Viagra, which also caused animal poisoning. It does not mean that Viagra have such side effects. The toxicity of Liuwei Dihuang Wan is very low, far lower than many common spices in our lives." . 威而鋼功效 .

  5. #5
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