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A Few Well Wishes Needed


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19 replies to this topic

#16 foam

 
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Posted 31 July 2013 - 08:22 AM

 

What the heck are you going in that often for?

 

 

 

 

My doctor and I are trying to find a cure to Kimura's disease.. :) So every two to four weeks we try something new and compare my bloods to how they were before the test. You need to do even more tests that often if you are on powerful drugs to make sure your kidneys don't crash, although I haven't tested drugs that strong yet, I will be soon. These two weeks I'm doing before and after of 3 million units per day of Nytastin (anti candida), next test after that is Ketotifen. If we see a real improvement in the lab results then I use it longer term, if not, it goes to the rubbish. The only things that have passed the test so far are Zyrtec and Loratadine. But I'll give you the tip now (3 days in) that Nystatin is looking good to stay long term


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#17 Rowena

 
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Posted 31 July 2013 - 09:26 AM

My doctor and I are trying to find a cure to Kimura's disease.. :) So every two to four weeks we try something new and compare my bloods to how they were before the test. You need to do even more tests that often if you are on powerful drugs to make sure your kidneys don't crash, although I haven't tested drugs that strong yet, I will be soon. These two weeks I'm doing before and after of 3 million units per day of Nytastin (anti candida), next test after that is Ketotifen. If we see a real improvement in the lab results then I use it longer term, if not, it goes to the rubbish. The only things that have passed the test so far are Zyrtec and Loratadine. But I'll give you the tip now (3 days in) that Nystatin is looking good to stay long term

 

 

What's Kimura's disease?  And holy cow, that's a lot of Nystatin!   My son has to take that for his thrush!  Can't imagine 3 million units a day!  Must be expensive!  I hope it all goes well for you!


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Gluten Free since Oct. 1, 2010
Fish/Seafood Free since 1997
Chocolate Free (with a few taste tests to see if I'm just crazy) since 2001.
Officially Dairy free 8/5/2013 (mostly dairy free before that, but I like my cheese and things) (dx'd officially with lactose intolerance, suspect casein too though)
Esophagitis dx'd 8/5/2013 thus doing a diet devoid of acidic foods and stuff


#18 Rowena

 
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Posted 01 August 2013 - 11:13 AM

Phone cord... Why oh why did I forget you?  Rather, why did I forget to charge my phone last night!  I hope and pray doc calls once my phone is plugged in... And pretty much the instant its plugged in.  If not... that's it.  I'm calling!  I AM TIRED OF WAITING!


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Gluten Free since Oct. 1, 2010
Fish/Seafood Free since 1997
Chocolate Free (with a few taste tests to see if I'm just crazy) since 2001.
Officially Dairy free 8/5/2013 (mostly dairy free before that, but I like my cheese and things) (dx'd officially with lactose intolerance, suspect casein too though)
Esophagitis dx'd 8/5/2013 thus doing a diet devoid of acidic foods and stuff


#19 foam

 
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Posted 02 August 2013 - 09:02 AM

What's Kimura's disease?  And holy cow, that's a lot of Nystatin!   My son has to take that for his thrush!  Can't imagine 3 million units a day!  Must be expensive!  I hope it all goes well for you!

 

Indeed what is Kimura's disease.. You could ask that to ten thousand doctors and I doubt more than one would know what it is and even the one that knew what it was would have no idea what it is... lol. The actual answer is, not a single qualified person on this planet has a clue what it is.. unfortunately.

 

Of course I'm 100% sure it's related to leaky gut as the blood work with high IgE and Eosinophilia is just too similar. If you asked me what is Kimura's disease today. I would tell you this..

 

Kimura's disease is an inflammatory benign condition that mimics several malignant conditions. The Kimura tumour itself is a lymph node or gland that has been "enhanced" by some ancient human genetic ability to help filter excessive amounts of Eosinophils and reactive cells in the blood, it's sponge like filled with pockets of Eosinophils and other broken down immune cells, surrounded with vascular structures, all this becomes more enhanced and more vascular as the years go by. The surrounding unmodified lymph nodes are enlarged to cope with the eventual drainage which happens daily once you are up and moving. High IgE levels correlate exactly to the high eosinophil level in the blood (less IgE is less eosinophils). It's a hypersensitivity towards TH2 immunity caused by a bacterial / fungal imbalance to "something" or you should probably say to "almost everything" ie.. it is leaky gut + a enhanced tumour/node + an immune system shift. That's from my perspective having it and having read every research paper about it. Although my version is quite a bit different to the papers :).

 

3 million units a day of Nystain is about $22 per week, that's ok because I'm only taking it for two weeks as a test. It's giving me a little bit of a headache but not so bad. I actually found 4 other people with Kimura's disease in the world so far and talked to them online, very interesting!. I've read more or less every published paper about it and talking to other people with it still blew my mind with how similar their stories are with long diagnosis times excessive testing and thinking they had a terminal cancer for the entire time it took to diagnose (it averages 8 years for Kimura's diagnosis). In the end it's pretty much a terminal disease anyway although a very slow one.

 

The good news is it's been cured ONCE and that was with a single injection of IVIg, which caused an immune system shift back towards TH1, unfortunately IVIg is $15,000 a shot and due to the rarity of cases and not knowing if it'll work on other people it hasn't been tried again yet.

 

You can get a bit of a laugh out of it though, I go to so many doctors and they all get a verrrrrrrrrry confused look on their face. I was supposed to have a ultrasound guided biopsy on my neck last week because I went to a new doctor and the imaging guy got so freaked out after looking on the ultrasound he wouldn't do it and sent me home.. This kind of thing happens all the time. It _looks_ really dodgy on the scans but what the doctors can't see and don't know is that sometimes it's almost gone, other days it's 10 times the size it was when I saw them. The week after it maybe small again... Even I don't know how it will be on an particular day. But I do know it's very reactive (to an unknown stimulus, that I and no one else have ever been able to pinpoint) and NOT a solid mass of dodgyness. All my 4 fellow sufferers say the same yet that is never mentioned in medical papers about it. Because the doctors that write the papers only see the person one week here, one week there.. and write the paper, they aren't in the mirror seeing what is what every day :).


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#20 Rowena

 
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Posted 05 August 2013 - 08:13 AM

Hassled my doc on Thursday afternoon... They didn't have the results from the hospital yet, so they said that they'd hassle the hospital for them, and then get back to me.  Granted they really only had one business day between then and now (Friday) but STILL I'm frickin annoyed!  If I don't get news today, I'm seriously contemplating checking myself into the hospital!  I've only been able to eat at MOST one meal a day!


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Gluten Free since Oct. 1, 2010
Fish/Seafood Free since 1997
Chocolate Free (with a few taste tests to see if I'm just crazy) since 2001.
Officially Dairy free 8/5/2013 (mostly dairy free before that, but I like my cheese and things) (dx'd officially with lactose intolerance, suspect casein too though)
Esophagitis dx'd 8/5/2013 thus doing a diet devoid of acidic foods and stuff





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