That's okay...I have problems with my fingers doing too much walking LOL! Sunny :)
didn't mean to repeat emily . . . sorry!
I am not quite sure of the name, but I will try and find out. I know I take a thyroid hormone replacement treatment, but I am also not sure of its name.
Emily ♥ emily
Do you happen to have hashimotos? That is an autoimmune disease of the thyroid..I too have it as well, was diagnosed about 13 years ago. First my thyroid went into overdrive and then it crashed. I take hormones to replace the ones that my thyroid now refuses to produce, Synthroid. This is different than an immune deficiency though, your body is producing auto antibodies that attacks its own tissues, organs etc...
You are right, you should not be this sick...keep being such a strong advocate in your healthcare and don't stop until you find answers!
Please do keep us updated, if you have more questions..shoot away. Sunny :)
Yeah, I have an auto-immune disease that effects my thyroid. Basically, my body is making antibodies, but they are slowly killing my thyroid. Although this is my immune system, they said I still shouldn't really be this sick always.
Hope that this forum is at least providing you with some support and realization that there are other people "out there" that are dealing with similar issues. I think it is great that you are advocating for yourself!! I joined the forum to help others and as a way for me to deal with my son's problems. Another thing we are exploring is his immune system. We live in the Chicago suburbs and found a great allergy/immunology dept at Rush University. They ordered a blood test that indicated some of my son's antibody levels were low. Then he was re-immunized and his blood will be tested again after 4-6 weeks to see if his body responds correctly and makes the antibodies. I will keep you posted. I will be thinking of you...
I too do sinus rinses which does help some, allergy season is here and it is tough even with good rinsing though. Emily, how frustrating...I hope that your parents reconsider taking you to a new ENT, hopefully one who is associated with a good teaching hospital and with tons of experience in resistant cases. Do some searching online for doctors in your area and then present the list to your parents. I didn't realize you were 15...you have had so many problems with those sinuses, you deserve another look by another doctor. I pray that you get somewhere with this...Sunny
Yeah my ENT has treated me for a fungal infection, and there was still no difference. I use a saline rinse everyday, two a day. I am young and I have asked my parents to take me to a different doctor, but they don't really want too, because this is my third ENT (only because I moved.) Anyways, I have also had the endoscopy cleaning, but within a day or two, everything is back.
Emily
Hi- my son has chronic sinus problems - has had 3 surgeries, allergy shots, etc. One thing we did was try a different Ears, Nose Throat doctor and he did have some different ideas. Cultures are difficult to get for sinus secretions but his doctor has tried treating it as fungal and my son has not has a sinus infection since his last surgery in 8/07. He does continue to have much pressure and congestion. For that he goes into the ent office about once a month to have a nasal cleaning done. We also took a trip to Mayo clinic and they agreed with Dr.'s care but also HIGHLY recommended daily saline nasal rinses you can do at home esp important for my son now that spring allergy season is here. Good luck.
The thing about our lungs are often difficult even for the Asthma specialist to diagnose. Allergies are often contemplating areas of what if, so how this is, is. You are the patient/doctor and so like a PI, you need to look at what's in your home, detergents, plants, animals, new clothing that has dye issues. Animals that are outside bring in all kinds of interesting things. Have you had the bed cleaned recently?
Dust, and mites are common, repeated colds etc . . .
Perfume in anything and everything.
Even licking the envelope to close it.
The food you eat, packaged or fresh.
The shampoo/conditioner
Ions particles that you will get from the TV, Computer, Radio etc.
Deodorant
Eye drops-funny how that is, but you never know.
Toothpaste-replace your toothbrush every 3 months, because no matter what you were sick with in the first place, you are only inviting it back if you keep the same toothbrush.
Chemicals you use to clean your bathroom, even organics can be bad.
Makeup
soap, bodywash.
Anything new, you've bought should be washed, then worn.
When there is a draft-cold air.
Someone is sick, and you got it again, so your immune system is crashing, what now?
The best way to deal with this is, talk to someone in the health food store near you, because they would be more able to help you than a docot who just keeps giving you more medication, when you don't really need it.
Can you believe this, perhaps your mind is allergic to you. The mind is a very smart tool, all you have to do say is: Gee I would like to be healthy and sick free, yeah apply the secret, it works. The mind is very powerful, make it work for you, you never know, you might just get better.
Be well
It keeps deleting some of my post, probably reads my symbols oddly, so I will write it out
Negative is less than 40
Borderline is greater than 40 but less than 60
Positive is greater than 60
I hope this works now....geesh!!! ;)
Okay.....let's try this again..not sure why this is happening
Normal 40 less than 60
Positive >60
Ooops, it appears that some of my post went to cyberland..
It should read (when describing results of sweat test):
"Normal values are 40 but 60"
Hi Emily...when they test for CF, many docs usually send you first for a sweat test which is really nothing. They put a patch on your skin with medication that stimulates sweating. After about a hour, they remove it and check the amount of salt. Normal values are 40 but 60. Most CF'ers are positive at this stage, but there are some (including myself) that fall in the negative, borderline areas. The next step (which I recommend anyways) is to get a full CF genetics panel offered by Ambry genetics. Believe it or not, there are over 1500 mutations (with more being added to the panel frequently) of CF.
While it is true that most CF'ers are skinny and have a tough time keeping weight on, about 15% have what is called pancreatic sufficiency. They are able to digest food normally and have no trouble with keeping weight on, even can be a bit chubby!
I used to be pancreatic sufficient, now I am not so I take enzymes with my meals to digest my food and to keep my weight on.
It is odd that nothing is cultured from those sinuses....you would think that with such infections bacteria would be found. I wonder if they are getting good samples.
I hope that this helps...If you have any more questions, I would be happy to help you out as much as I can. Sunny :)
I really don't think I have CF, thought, because I am overweight and people with CF are usually the opposite, right?
Emily
I have had the mucus from my sinus cultured, but it came negative for everything. When I was younger, I was told that I had asthmas, but very mild. In the past year, my allergist retested me and decided that I didn't have, which is what I always thought. I often have a cough and find myself short of breathe. I have a friend with CF and never thought of myself of having it, since he is always coughing and I only cough occationly throughout the day. How do they test for that?
Emily
Did the doctors culture your sinuses to see what is growing in them? Just curious...It really sounds like you have been through quite a bit regarding sinuses and other problems. Do you happen to have any lung issues as well? I have atypical CF that was just diagnosed 3 years ago mostly because of my lung problems but also because I have chronic sinus problems with many infections. It is worth ruling out if anything especially if the doctors are at loss. I am sure that there are other disorders out there that can explain the repeat infections that you have. I hear you as far as doctors treating things separately according to what they specialize in.
I hope that you get answers soon...Sunny