i have a diagnosis!

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Regular Member


Date Joined Jul 2010
Total Posts : 200
   Posted 11/22/2010 7:40 AM (GMT -6)   
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

Alcie
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Date Joined Oct 2009
Total Posts : 5029
   Posted 11/22/2010 8:29 AM (GMT -6)   
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%."
Alcie
 
 

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 11/22/2010 10:22 AM (GMT -6)   
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
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

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solar powered
Veteran Member


Date Joined Nov 2007
Total Posts : 538
   Posted 11/22/2010 10:23 AM (GMT -6)   
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
If I can laugh at it, I can live with it.

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 11/22/2010 11:46 AM (GMT -6)   
 
  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

TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

Chronic Pain Moderator
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Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 11/22/2010 2:15 PM (GMT -6)   
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!!
Retired Mom

caligirl2001
Regular Member


Date Joined Jan 2010
Total Posts : 197
   Posted 11/22/2010 4:44 PM (GMT -6)   
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
Fibromyalgia, High BP, Migraines, anxiety, Non Celiac Gluten Intolerant
Current medications: Topamax, Maxalt, Lotrel, Wellbutrin

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 11/22/2010 8:46 PM (GMT -6)   
Wishing you lots of healing thoughts. Best luck with the treatment. Be positive.
We're all wishing you well, big hugs Buttercup, golitho

MIKEL99
Veteran Member


Date Joined Feb 2010
Total Posts : 914
   Posted 11/23/2010 8:41 AM (GMT -6)   
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
HIV+. meds - epzicom, Kaletra . oxycontin as needed , indothemiacin . hip replacement surgery done !!! Saw the surgeon and I'm really healing great ! Been in physical therapy for almost 2 months now and I can walk pretty well , only going up and down stairs is still a little tough so one step at a time , but that's because of my knee not my hip , but I can walk again , no cane , just me !!

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 11/26/2010 8:29 PM (GMT -6)   
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
SUZANE

One day at a time!!

left forum.
Regular Member


Date Joined Jul 2010
Total Posts : 200
   Posted 11/29/2010 6:25 AM (GMT -6)   
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

JulietteSuzanne
Regular Member


Date Joined Dec 2007
Total Posts : 104
   Posted 11/29/2010 4:40 PM (GMT -6)   
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.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 11/29/2010 5:44 PM (GMT -6)   
27 pills. ugh.
get well soon.
Joy

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Regular Member


Date Joined Jul 2010
Total Posts : 200
   Posted 11/30/2010 12:39 AM (GMT -6)   
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 :)
15 years old,
Chronic stomach pain with no diagnosis yet and lots of other things.

When the going gets tough, the tough get going.

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3702
   Posted 11/30/2010 10:17 AM (GMT -6)   
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
Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications:Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV I am White Beard with a White Beard!
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