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i have a diagnosis!

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Chronic Pain
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Posted 11/22/2010 12:40 PM (GMT 0)
Hey :)

Haven't been posting much lately! But have been reading when i can!

still feeling pretty yuk, but went to the doctor today because had gotten results back!

he said i have blastocystis hominis, a parasite in my body. it explains the chronic fatigue, nausea, fainting, and the extra pain.. he doesn't know if this is the original cause of the pain, he said its unlikely because its so severe and the internal bleeding doesn't fit but its possible. but if its not he has lots of other ideas and tests to run and thinks we might be able to find a reason for all of this, even if its not fixable, knowing what it is will help me deal with it :)

for the blastocystis hominis, he said its pretty bad and has caused my gut not to be able to absorb most foods and just not working properly, but once its gone that should all clear up eventually. i have pretty bad mind fog at the moment, can't remember anything before today and just can't think properly, that too hopefully will clear up :)

but yeah i'm starting the treatment next week.. hes said its pretty tough on your body and will be amazed if i make it out of bed in the mornings.. but i guess i will just see how it goes :) if the treatment doesn't work then i will have to go over east to have radiation therapy and some other colonoscopy with antibiotics? not exactly sure but hopefully this first treatment will work and i will be feeling better than i have in a long time :)

if anyone has any information/advice please let me know :)

i'm also only eating fruit vegetables chicken and fish at the moment to clear my body.

xx
Posted 11/22/2010 1:29 PM (GMT 0)
Radiation therapy? I'd get a second opinion from somebody in parisitology. I would try all sorts of antibiotics first, also Rifaximin, which treats bacterial overgrowth.

The Mayo website says " metronidazole (Flagyl), the combination medication sulfamethoxazole and trimethoprim (Bactrim, Septra, others), and the antiprotozoal medication iodoquinol (Yodoxin, others)."

I have a relative who contracted something like this on a trip. Colonoscopy was useless, stool cultures showed nothing, but blastocystis was a possibility. It took nearly a year for the condition to clear up with Rifaximin, which stopped it, but had to be repeated for a week or so every couple of weeks.

Medscape article: "Several studies conducted during the past 5 years indicate, however, that metronidazole 800 mg three times daily for 5–10 days is effective in some patients, although the paucity of information means that the accurate prediction of a response is difficult in individual patients.[77] Co-trimoxazole in standard doses (sulfamethoxazole 800 mg and trimethoprim 160 mg, twice daily for 7 days) is, however, reported to eradicate the organism in more than 90% of infected, symptomatic individuals.[78] Numerous other antiprotozoan componds have been tested, with variable results, but perhaps the most promising new drug is nitazoxanide. A placebo-controlled trial of nitazoxanide 500 mg twice daily for 3 days reported a clinical and parasitological cure rate of 86%."
Posted 11/22/2010 3:22 PM (GMT 0)
I don't have any useful information on this, but will Hope that
whatever this first round treatment might be, will work for you.
Please keep us posted when you can on your progress.
Prayers and Healing Hugz coming your way...
(((((((((((((((((((((((((((((((((Buttercup)))))))))))))))))))))))))))))))))))))))))))
Healing Hugz and Prayers
Posted 11/22/2010 3:23 PM (GMT 0)
Hi buttercup. We haven't talked before but I have been following your posts. I am really happy for you that you have a diagnosis. Like the doctor said it may not be the only thing going on but at least it is a starting point towards feeling better. I hope the treatment isn't as bad as the doctor made it sound. If it is just hang in there and remember that it is part of the process of healing. Good luck with that and please keep us posted. You are a very brave girl and will get through this. Your HW family will be here to cheer you on. Please take care, Lisa
Posted 11/22/2010 4:46 PM (GMT 0)
 

  Oh ButterCup!

   You and your parents must be so relieved! After further reading, the symptoms match what you have been experiencing to a T. It ecplains so much! It is such wonderful news to hear that you  finally have a diagnosis. How soon will you be able to begin treating the parasite? Will you have to miss school?

 

     *warm hugg*
           dani

Posted 11/22/2010 7:15 PM (GMT 0)
Hi Buttercup,

I'm so happy you have found your answer.  It seems like such a strange diagnosis that it's no wonder it took so long to find out what the problem was.  You should be able to get help now and to quiet all of those big mouths who thought you were just putting on.  I'm so glad that you have the potential to get better and can lead a normal life in adulthood.  I have often wondered how you would cope with this as you continued to go to school.

You are a very special person, with a great deal to offer the world.  I would never wish your pain on anyone, but I know you will be forever changed to understand others and their needs because of what you have experienced.  I am proud of you for not giving up and for seeking an answer.  The treatment may be hard, but we will be here for you if you need us for anything.

I'm happy to see you find your diagnosis!!

All my best!!

Posted 11/22/2010 9:44 PM (GMT 0)
Hi Buttercup - So glad to hear that you have a diagnosis and that there is a treatment! :) You have been through so much and I am so happy that you will soon be feeling better.

Melissa
Posted 11/23/2010 1:46 AM (GMT 0)
Wishing you lots of healing thoughts. Best luck with the treatment. Be positive.
We're all wishing you well, big hugs Buttercup, golitho
Posted 11/23/2010 1:41 PM (GMT 0)
You got some good advice here Buttercup I hope it helps . For me , I know how it is not to have a diagnosis , to be suffering and not know why is tough , at least you have some info now . Follow up and make sure but I know how knowing something can be a great comfort . I really hope the treatment works well for you and you respond well , best of luck my friend ! Mikel
Posted 11/27/2010 1:29 AM (GMT 0)
Hi my sweet little Buttercup. How are you feeling this last week. I am glad they found out what is going on as you have been going thru way too much. You are so brave and courageous to have all these symptoms and still hang in there with school.
So is it pills that you will be starting with? Let me know.

Please keep us up to date hon as we are all concerned for you.

Hugs and prayers

Love
Posted 11/29/2010 11:25 AM (GMT 0)
Hey everyone
Thanks heaps for your replies :)

I started my first lot of treatment today, 27 pills a day.. I actually don't feel too bad :) just a very tired and slightly more nauseous but if this is as bad as it gets then I will be so glad to only have to go through this but be feeling so much better after!!

I will keep you up to date with how I'm going :)

Thanks all of you for the amazing support, it really does help soo much and mean alot,

only one week of school left til summer holidays!


xx
Posted 11/29/2010 9:40 PM (GMT 0)
My Goodness how bizarre! A Parasite! Go figure. You need to be on one of those "medical mystery" shows on TV.

How again did you get to this diagnosis? By a test? Amazing.
Posted 11/29/2010 10:44 PM (GMT 0)
27 pills. ugh.
get well soon.
Posted 11/30/2010 5:39 AM (GMT 0)
It is pretty weird!! It was a stool test? Not cheap either, he did a few different ones to make sure he checked everything so it was expensive but mum said she would pay anything to figure this out and i guess it paid off :)
Posted 11/30/2010 3:17 PM (GMT 0)
Buttercup

I have not been posting very much lately, I glad you are finally getting some answers for your condition! As you have in your signature block " when the going gets tough, the tough get going!" Being retired military, that is one of the things that I have lived my life by, and have also said it many times even on this forum, just keep that saying close to your heart, and you will get through all of this just fine!

 

Good Luck to You!

 

White Beard

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