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

Thanks Katherine. Your encouraging words makes my life livable !

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@mayoclinicseeker, HELP! Can anyone jump in and help Pavitra with any names or information .. please help if you can. Call a friend or family member in Tennessee and see if they can help? Thanks to all .. that is why we ARE a caring community! Hugs to all! Katherine

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I think its easy to land on moon than get a doctor’s appointment. Vanderbilt hospital is giving me an appointment on March 20th 2017 for primary care doctor and i cant see infectious disease doctor without referral from primary care. Since i am moving none of the doctors here know anyone in Fraklin and no reference. Cant we as a forum do something about this. When do we need doctors when we are sick not when doctor is available. When doctors can see everyone in a heavily populated country why does it take so much time for the doctors to see a patient here. The time spent per patient is hardly 10 mins . I am disappointed. I think healthcare is basic human right and its not even the point that we are asking help, Everytime i need doctors appointment i am asked to go to emergency is it fair to ask me to go to emergency, My infectious disease doctor asked me to get my MRI done and her appointment is not available till Jan 13th. I dont see them comeup with any solution but they really push us to our edge. I even reached out to public health office but they cant do anything too. Apologies i dont know whom to share my furstration and concern with other than my forum friends. I sincerely apologies. Never felt so helpless and never cried so much in my entire life. Friends i am breaking down. Request you all to pray i find someone who will address my concerns.
Coming to symptoms, Night sweats have not stopped. No fever but the lower abdominal pain is continuous and i have taken a painkiller as i need to travel tonight. Take care. You guys are my ray of hope ! big hug and lots of love. Happy weekend !

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@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

Liked by Jamie Olson

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@mayoclinicseeker

I think its easy to land on moon than get a doctor’s appointment. Vanderbilt hospital is giving me an appointment on March 20th 2017 for primary care doctor and i cant see infectious disease doctor without referral from primary care. Since i am moving none of the doctors here know anyone in Fraklin and no reference. Cant we as a forum do something about this. When do we need doctors when we are sick not when doctor is available. When doctors can see everyone in a heavily populated country why does it take so much time for the doctors to see a patient here. The time spent per patient is hardly 10 mins . I am disappointed. I think healthcare is basic human right and its not even the point that we are asking help, Everytime i need doctors appointment i am asked to go to emergency is it fair to ask me to go to emergency, My infectious disease doctor asked me to get my MRI done and her appointment is not available till Jan 13th. I dont see them comeup with any solution but they really push us to our edge. I even reached out to public health office but they cant do anything too. Apologies i dont know whom to share my furstration and concern with other than my forum friends. I sincerely apologies. Never felt so helpless and never cried so much in my entire life. Friends i am breaking down. Request you all to pray i find someone who will address my concerns.
Coming to symptoms, Night sweats have not stopped. No fever but the lower abdominal pain is continuous and i have taken a painkiller as i need to travel tonight. Take care. You guys are my ray of hope ! big hug and lots of love. Happy weekend !

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It’s the same on the west coast. I thought I was having heart trouble and I couldn’t get in to see my heart doctor..had to go to the emergency room…what good are they if you can’t see them when you need them. Our emergency room nor our town have a heart doctor. I had to wait a month to see one who came to a town from another area. It is so frustrating. I have learned that I must hope my general doctor knows what is going on and then you can’t see him for several days or up to a week either. So I hear you. Know you are not alone.

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@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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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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@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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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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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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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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@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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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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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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@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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