1. < Infectious Diseases

Diagonised with tuberculosis in the gut and the struggle is never end

Posted by mayoclinicseeker @mayoclinicseeker, Dec 13, 2016

I was having night sweats continuous fevers and lot of lower abdominal pains. i went from post to pillar here in USA none of the doctors were able to diagnose as this is not very prevalent here. Nothing worked out all this went on for 5 months and at last i had to go to India there i was diagnosed in a day. I thought my agony ended and got the medicine and started back working here in USA after 3 months of treatment in India. Now again i have been having night sweats lot of pain and totally uncomfortable. The journey of running post to pillar has started, none of the doctors own up the case infectious disease doctor says i should see a GI and GI says i should see a gynac. I think i should book my tickets again to India all this has been going on from 2 months. Does anyone have this disease who can guide me on the doctors to approach , what to eat and what to expect. Kindly friends please save my life by sharing your story. Thanks

Interested in more discussions like this? Go to the Infectious Diseases Support Group.

mayoclinicseeker | @mayoclinicseeker | Dec 19, 2016
In reply to @katemn "@mayoclinicseeker .. Pavitra, I SO TOTALLY hear your frustration! The medical cost in the USA are..." + (show)
@katemn

@mayoclinicseeker .. Pavitra, I SO TOTALLY hear your frustration! The medical cost in the USA are some of the highest in the WORLD .. yet some of the most inefficient. I won't even go into my experience in Geneva with my pneumonia with a total cost of I think about 100 Euro for a chest Xray .. discussions .. billing payment etc .. ALL done within ONE HOUR!! THAT is why one reason why our medical costs are CRAZY .. people who can't get appointments get SO sick that are REQUIRED to go to the Emergency Rooms at THAT crazy cost! Our whole system is out of whack . . and I don't have the answer for you or for me.. I can only say how sorry I am this is happening to you.

When you call Wendy on Monday tell her you are from India and it is easier to express yourself in an email than by phone .. could you email her with your symptoms? If she agrees email her some of the things you have told us on the Forum .. MAYBE that will help. Don't give up. I hate to see you have to travel back to India to get medical care. Doesn't say much about the USA medical system! Hugs to you! Katherine

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I have just moved to Nashville. Today is my first day in new office so got busy. I wont give up for sure. Either i do or I die but atleast i fight hard to bring in an ounce of change in the system.

One more symptom:
Addicted to your hugs Katherine give me more 🙂

Tight bear hugs. Take care and be safe.

Thanks

Regards
Pavitra

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Katherine, Alumni Mentor | @katemn | Dec 19, 2016

Pavitra, you are one tough cookie .. and a fighter! Because of that I know you won't give up .. just keep on doing what you are doing and I know you will be ok! Keep on .. keepin'on! Hugs to you! Katherine

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Katherine, Alumni Mentor | @katemn | Dec 19, 2016
In reply to @katemn "@mayoclinicseeker .. Pavitra, I SO TOTALLY hear your frustration! The medical cost in the USA are..." + (show)
@katemn

@mayoclinicseeker .. Pavitra, I SO TOTALLY hear your frustration! The medical cost in the USA are some of the highest in the WORLD .. yet some of the most inefficient. I won't even go into my experience in Geneva with my pneumonia with a total cost of I think about 100 Euro for a chest Xray .. discussions .. billing payment etc .. ALL done within ONE HOUR!! THAT is why one reason why our medical costs are CRAZY .. people who can't get appointments get SO sick that are REQUIRED to go to the Emergency Rooms at THAT crazy cost! Our whole system is out of whack . . and I don't have the answer for you or for me.. I can only say how sorry I am this is happening to you.

When you call Wendy on Monday tell her you are from India and it is easier to express yourself in an email than by phone .. could you email her with your symptoms? If she agrees email her some of the things you have told us on the Forum .. MAYBE that will help. Don't give up. I hate to see you have to travel back to India to get medical care. Doesn't say much about the USA medical system! Hugs to you! Katherine

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@mayoclinicseeker Pavitra,
Have just been informed of a GREAT resource for you! Check into this! Good luck! Hugs to you! Katherine

https://medium.com/@michelledigiacomofitzgerald/mayo-clinic-americas-calcutta-bfd60d9e326#.5vlnw928g
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Kanaaz Pereira, Connect Moderator | @kanaazpereira | Dec 22, 2016

Hi @mayoclinicseeker, Pavitra,

I just wanted to jump into this conversation and let you know that you are not alone.

Are you originally from India? So am I, and I can completely understand how difficult this must be for you, especially being on your own.
I would also really encourage you to check out this discussion here, on Connect, about visiting Mayo Clinic for the first time: http://mayocl.in/2hgasVG

@katemn has given you wonderful advice, and I'm sure you find great comfort in her support. Keep us updated with your progress.

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mayoclinicseeker | @mayoclinicseeker | Dec 23, 2016

Does anyone on the anti tab therapy feel anxious and as though they may pass out or die. My pain has not come down and trying hard to keep my head sane. I have started drinking something called arrow root powder helps my pain. Take arrow root powder available in Indian stores mix it with water keep stirring n boiling add lil sugar n drink. I have heard it reduces internal swelling. I'm not an expert so please find out your allergies n medical option. Turmeric capsules also help in immunity building I have heard. Try at your own risk.

I am thinking of going to emergency or urgent care so that they can refer me to some infectious disease doctors here . Wish you a merry Christmas and a happy new year my buddies. Hope the medical world becomes more humane this year
Take care!
.

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mayoclinicseeker | @mayoclinicseeker | Jan 11, 2017

Hi my soul sisters and my buddies,

I tried my best to reach out to doctors here in Nashville.I found a nice caring doctor too but my pain is neither going away nor reducing again I'm put on the cycle of infectious disease, gi, gynecologist , so I thought about it and decided it's not worthy of risking my life and bearing this pain. Today it will be exactly 5 months of pain. I am about to book my tickets back home to India next week which is 21st Jan. I wish you all speedy recovery. I'm hoping for some miracle to happen. God be with you all, if there is at least something remaining of me I will reply back. Take care. I luv you all to the moon and back. Please do not get demotivated by my story. Hope to see you soon. I can't hold my tears back. You all are amazingly inspiring. Katherine can you give me your tight hug please, I need it bad .

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Katherine, Alumni Mentor | @katemn | Jan 12, 2017

@mayoclinicseeker .. Pavitra, STOP!! If you can afford a ticket back to India .. then book a ticket to MAYO CLINIC, ROCHESTER MN!! People go there from all over the world .. it is "mecca" to the world to seek a solution to their medical issues!

On 12/15 you wrote:
I just called Mayoclinic minnesota but here is the catch they want my primary care doctor to send them the reports and my primary care doctor did not even give a proper report to my short term dissability. I have asked him to refer many time but he does nothing i cant depend on anyone else. Can my dear friends tell me a way out to reach out to infectious diseases doctors in MayoClinic. Anticipating your reply.

I then gave you information on getting into Mayo Clinic .. so DO IT! Or if this just does not feel like the right thing .. book the ticket to India and go in peace. Seek help where you need to .. butt do it. There is nor reason to endure 5 months of pain. Pavitra, just keep us posted .. we will be sending you lots of positive energy and Hugs! Katherine

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mayoclinicseeker | @mayoclinicseeker | Jan 23, 2017

Hi Katherine ,

Good news good news. I have been asked to stop tb medication. They don't see any tuberculosis bacteria anymore. It's a miracle but as a side effect is I am having intestinal stenosis and slight abdominal wall thickening. I got a colonoscopy and biopsy of the terminal illeal done. All my symptoms of pain was due to this and now behind a different monster yet again another struggle story. If anyone is suffering from that please let me know so that we can discuss the best practices. Thanks luv you all my angels.

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mayoclinicseeker | @mayoclinicseeker | Jan 23, 2017

Dear Katherine,

I have enrolled into mayclinic and filled in all the forms asked to fill in. I'm just waiting for them to call me. I'm happy this new year has new challenge in the form of intestinal stenosis. I will keep you all posted. Thanks a ton 🙂 for everything.

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3 replies
Katherine, Alumni Mentor | @katemn | Jan 23, 2017
In reply to @mayoclinicseeker "Dear Katherine, I have enrolled into mayclinic and filled in all the forms asked to fill..." + (show)
@mayoclinicseeker

Dear Katherine,

I have enrolled into mayclinic and filled in all the forms asked to fill in. I'm just waiting for them to call me. I'm happy this new year has new challenge in the form of intestinal stenosis. I will keep you all posted. Thanks a ton 🙂 for everything.

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Good News .. BUT .. I have checked with Colleen so see if there is a Forum for your new issue .. will let you know when I hear. Hugs to you! Katherine

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