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Health knowledge made personal
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Health knowledge made personal
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Hi Carol,
Sounds very frustrating what you have been through. Have you looked for a Naturopathic Doctor, Integrative Medicine Physician or Functional Medicine Practitioner in your area? There ARE practitioners who can help and some do telephone consultations if there are no progressive practitioners in your area.
These practitoners can do testing and/or lifestyle coaching that conventional physicians just don't do even though they have access to them.
Carol, if I can give you a bit of advice.
The fact that you have Fibro and your children have autism makes me suspect a few things. The first two, you can have your current MD help you with.
1) Get your Vitamin D levels checked. It's likely that all of you are very Vitamin D deficient. Your doctor will likely not think that this is important, but Vitamin D deficiency could be contributing to the pain of Fibro and the mental impairment of autism. Insist that your doctor check your Vitamin D blood level with a 25(OH)D test and take Vitamin D in large enough doses to keep your Vit D levels between 40 and 70 ng/mole. It's likely that your doctor will do something like put you on 800 IU's per day which is riduculously low. It's likely that you will need upwards of 50,000 IU's per week or EVEN more. Have him recheck your Vitamin D levels every 3 months if, indeed, you and your family ARE deficient
2) Have your doctor check all of you for H-pylori in a blood test. This is a stomach bacteria that can cause a wide variety of symptoms. Again, your doctor will think that this is not necessary because they don't recognize H pylori as a problem unless you have digestive problems. But H pylori CAN ABSOLUTELY cause all sorts of crazy symptoms. And it's transmitted in families through even casual kissing, so you could all have it.
3) It's VERY likely that you are all EXTREMELY gluten intolerant. Conventional doctors ONLY recognize Celiac Disease, the most extreme form of gluten intolerance. But it exists on a range from almost no symptoms to very severe, with Celiac only being one extreme. EVEN IF you have all been tested for celiac disease and have been negative, I would NOT believe the blood tests (for various reasons) and would have you all IMMEDIATELY go on a gluten free and sugar diet!!!
There are a LOT of other things that a skilled practitoner can help you with. You don't have to be so ill.
Let me know if you have any questions. I'd be glad to help.
Kerri Knox, RN
Functional Medicine Practitioner
http://www.easy-immune-health.com
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Posted by allthatjazz
I am 50 years old and since the age of 10 I have been on a downhill run with health issues. I found a doctor last year who actually admitted that my daughter and I are two of the most complicated patients he has ever encountered and that we do have something wrong but he just can't put it all together. We have symptoms of fibromyalgia, we have anklosying spondilitis, weight gain, mood swings, chronic pain, have had mono, chronic fatigue and the latest is serious vitamin D and B defeciencies. We are always tired, our legs feel as if we have run the marathon if we have any exercise or even just going up a set of stairs they become like rubber and lead. We also both have red flushing and now I am having trouble with sweating on my face excessively and I had a hysterectomy 12 years ago and went through the change then. I have no hormones and no stress hormones left. We live a very stressful life...6 children and 3 on the autism spectrum and my daughter has helped me raise them....We have had doctors tell us it is in our heads, make us cry, tell us that 1000 calories in are 1000 calories out...NOT TRUE! Is there any hope for a doctor who may know what is going on with us! We have seen 9 doctors in the past 6 years with complete work ups with each one and them throwing their hands in the air....or pushing off and making us feel like freaks or whiners...that we are not! I work full time and was a single mom until this year and raised 3 autistic children without ever being on welfare. My daughter just graduated with her special ed degree from college but I feel like we are someday going to just lose it! The stress is unbelieveable and I am sure having an affect on our bodies....Sorry for the long post but I had to explain....Carol
PS...I have two sons that can not gain weight...need 4000 calories a day to gain weight and my daughter and I need 500 to lose anything....