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mayoclinicseeker
@mayoclinicseeker

Posts: 17
Joined: Dec 13, 2016

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

Posted by @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

REPLY

HI @mayoclinicseeker,

Welcome to Connect. I can only imagine how difficult this must be for you, and I sincerely hope someone who has had a similar experience will join this discussion.

Although, not directly related to your condition, I would like to tag @danielad, @flor, @melissa23, @sauwoon8, @jordan52, @lbotyans, @ross, as they have discussed some form of TB. I also wonder if Katherine, @katemn, one of our wonderful mentors may have some insight?

In the meantime, if you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here: http://mayocl.in/1mtmR63.

@mayoclinicseeker, how are you currently managing your symptoms?

I am so sorry to hear about your issues @mayoclinicseeker! I am afraid I cannot provide any insights; however, I wanted to reach out and give you a “virtual hug”. Know you are NOT alone; many are thinking of you and will write back with any additional information.

Daniela

Hello MayoClinicSeeker, Welcome to Mayo Clinic Connect! You have found an excellent source of information and support. I myself know ZERO about the VERY real symptoms you are experiencing .. but I know a LOT about dealing with doctors and medical issues in general! Might I suggest you take a look at my particular Mayo Clinic Connect Forum that deals with a type of Non Tubercular lung issues .. frankly MANY of the members on our Forum have been MISDIAGNOSED and UNTIL they become advocated for themselves .. EDUCATE themselves .. due their OWN “Due Diligence” .. they do NOT get the proper medical attention! Sorry but this has been the truth.

https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=18#post-243182

On this particular Forum you WILL learn how to advocate for yourself .. how to put together a game plan .. now NOT to be pressured into ANYTHING because you have educated YOURSELF! Once on our Forum all of us will try to help you further. Read a few pages of our Mayo Clinic Connect .. after you have done so .. post a few questions .. then we will all try to help you further. We will be there for you on this journey as far as we can despite the fact we have NOT had your particular symptom nor been to India”.

One thing I WOULD say is PLEASE do NOT get a ticket back to India!! I BEG of you to call Mayo Clinic in Minnesota 507-538-3270 7 a.m. to 6 p.m. Central time, Monday through Friday! Tell them what you have told us .. THEN book a flight to Minneapolis (MSP) and get here ASAP! How do I know?? I had a rare lung disease (Mycobacterium Avium Intracellular Complex) that I was blessed to find an EXPERT who speaks Internationally on MY lung disease! Mayo Clinic in Rochester MN is “Mecca” as far as I am concerned! People fly here from all over the world/USA to consult with the doctors here. The blessing is that they work as a “team” .. you get the brains of a team of doctors who consult with each other .. NOT just ONE doctor! It is your hands .. but if I was sitting in your shoes .. I’d make that phone call and get those plane tickets! You will rent a car and drive from the Airport to Rochester .. rent a hotel room and you are on GO! DO IT! You do NOT need to go to India to get the best care .. it is right here under your nose! Sending you a hug! Katherine

Good Luck MayoClinicSeeker, hope the above helps you just a little. I know this is a really tough time for you .. sending you a Hug! Katherine

@katemn

Hello MayoClinicSeeker, Welcome to Mayo Clinic Connect! You have found an excellent source of information and support. I myself know ZERO about the VERY real symptoms you are experiencing .. but I know a LOT about dealing with doctors and medical issues in general! Might I suggest you take a look at my particular Mayo Clinic Connect Forum that deals with a type of Non Tubercular lung issues .. frankly MANY of the members on our Forum have been MISDIAGNOSED and UNTIL they become advocated for themselves .. EDUCATE themselves .. due their OWN “Due Diligence” .. they do NOT get the proper medical attention! Sorry but this has been the truth.

https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=18#post-243182

On this particular Forum you WILL learn how to advocate for yourself .. how to put together a game plan .. now NOT to be pressured into ANYTHING because you have educated YOURSELF! Once on our Forum all of us will try to help you further. Read a few pages of our Mayo Clinic Connect .. after you have done so .. post a few questions .. then we will all try to help you further. We will be there for you on this journey as far as we can despite the fact we have NOT had your particular symptom nor been to India”.

One thing I WOULD say is PLEASE do NOT get a ticket back to India!! I BEG of you to call Mayo Clinic in Minnesota 507-538-3270 7 a.m. to 6 p.m. Central time, Monday through Friday! Tell them what you have told us .. THEN book a flight to Minneapolis (MSP) and get here ASAP! How do I know?? I had a rare lung disease (Mycobacterium Avium Intracellular Complex) that I was blessed to find an EXPERT who speaks Internationally on MY lung disease! Mayo Clinic in Rochester MN is “Mecca” as far as I am concerned! People fly here from all over the world/USA to consult with the doctors here. The blessing is that they work as a “team” .. you get the brains of a team of doctors who consult with each other .. NOT just ONE doctor! It is your hands .. but if I was sitting in your shoes .. I’d make that phone call and get those plane tickets! You will rent a car and drive from the Airport to Rochester .. rent a hotel room and you are on GO! DO IT! You do NOT need to go to India to get the best care .. it is right here under your nose! Sending you a hug! Katherine

Good Luck MayoClinicSeeker, hope the above helps you just a little. I know this is a really tough time for you .. sending you a Hug! Katherine

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Thank you everyone need every bit of information and all the hugs. i forgot to tell i have a condition called wanting all the hug condition 🙂

@katemn

Hello MayoClinicSeeker, Welcome to Mayo Clinic Connect! You have found an excellent source of information and support. I myself know ZERO about the VERY real symptoms you are experiencing .. but I know a LOT about dealing with doctors and medical issues in general! Might I suggest you take a look at my particular Mayo Clinic Connect Forum that deals with a type of Non Tubercular lung issues .. frankly MANY of the members on our Forum have been MISDIAGNOSED and UNTIL they become advocated for themselves .. EDUCATE themselves .. due their OWN “Due Diligence” .. they do NOT get the proper medical attention! Sorry but this has been the truth.

https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=18#post-243182

On this particular Forum you WILL learn how to advocate for yourself .. how to put together a game plan .. now NOT to be pressured into ANYTHING because you have educated YOURSELF! Once on our Forum all of us will try to help you further. Read a few pages of our Mayo Clinic Connect .. after you have done so .. post a few questions .. then we will all try to help you further. We will be there for you on this journey as far as we can despite the fact we have NOT had your particular symptom nor been to India”.

One thing I WOULD say is PLEASE do NOT get a ticket back to India!! I BEG of you to call Mayo Clinic in Minnesota 507-538-3270 7 a.m. to 6 p.m. Central time, Monday through Friday! Tell them what you have told us .. THEN book a flight to Minneapolis (MSP) and get here ASAP! How do I know?? I had a rare lung disease (Mycobacterium Avium Intracellular Complex) that I was blessed to find an EXPERT who speaks Internationally on MY lung disease! Mayo Clinic in Rochester MN is “Mecca” as far as I am concerned! People fly here from all over the world/USA to consult with the doctors here. The blessing is that they work as a “team” .. you get the brains of a team of doctors who consult with each other .. NOT just ONE doctor! It is your hands .. but if I was sitting in your shoes .. I’d make that phone call and get those plane tickets! You will rent a car and drive from the Airport to Rochester .. rent a hotel room and you are on GO! DO IT! You do NOT need to go to India to get the best care .. it is right here under your nose! Sending you a hug! Katherine

Good Luck MayoClinicSeeker, hope the above helps you just a little. I know this is a really tough time for you .. sending you a Hug! Katherine

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Mayoseeker .. do you have a first name .. makes it so much more personal! What a GREAT response! Loved it! Sending you yet ANOTHER Big Hug! Katherine

@Kanazpereira: I have been taking Rifampin, Ethambutol, Isoniazid and Pyrazinamide from almost 8 months. I do regular meditation which keeps me sane most of the time and helps with pain. Friends like all of you keep my spirits up to fight this menace
@katemn: I want to go to Mayoclinic minnesota as suggested but i dont understand where should i start i dont know which doctor to meet. I hope there too they dont start from primary care. More than anything if they can find out whether i am really having MDR or whats going on rest all can be managed. Throw some light on how to manage the insurance and the cost of treatment.

Liked by juliannestrack

Dear Mayoseeker,
1. call 507-284-4162 .. tell them your story .. symptoms. That you want the FIRST available appointment with a doctor in he PULMONARY dept specializing in MDR .. that you will take a cancellation. Those doctors work as a team .. consult with each other .. you will be in good hands.
2. Call your insurance company .. ask in Mayo Clinic, Rochester MN is their “network” of clinics/doctors. If NOT .. what is the cost to you to ‘GO OUT OF NETWORK”. It is commonly 80/20 .. they pay 80% of the costs .. you pay 20% of the costs of Mayo will be “out of network”.
3. You will fly into the Minneapolis airport (MIA) or fly directly into Rochester MN
4. or Rent a car .. drive from MPL to Rochester .. approx. 1.5 hour drive
5. stay at a hotel in Rochester .. there are ones that are walking distance to Mayo .. google and then call and ask if they are walking distance

If I have forgotten something .. just ask me! Sending you a hug! Katherine

Hi @mayoclinicseeker,

I’m so glad that you are being an advocate for your own health, and would like to come to Mayo Clinic.

Mayo has 3 campuses: Jacksonville, Florida; Rochester, Minnesota and Phoenix, Arizona. On this webpage, http://mayocl.in/1mtmR63 you’ll find the contact information for each of the locations.
If you would like to call the Minnesota campus for an appointment, here’s the number: 507-538-3270
They will discuss your medical history with you and match you to a specialist suited to your situation. They can help you navigate your healthcare journey, answer your questions and guide you through the treatment plan.

For billing and insurance information you can call Patient Account Services at 800-660-4582, or click on this link: http://mayocl.in/2hpba1s

@mayoclinicseeker, we sincerely hope you find the care that you need; do keep us updated.

@katemn: I do have a first name and all of you can call me Puffs or Pavitra. I know it feels good to be called by our name.

Today i went to a GI practioner she did not own up my case she rather advised i should go to India as they have seen this disease better there than here :(. I had high regard for doctors untill i faced this issue. No offence to genuine ones but most of them are treating us like their business units which unit can make more money).

List of my worries:

I trust Mayo clinic but how do i know which of the 3 is better for my case
How easily they are reachable as this needs close monitoring and reassurance
How easy it is to schedule and cancel appointments
i dont have lung issue and tb is in my tummy, most of the doctors have seen it in lungs can i find someone who will treat it in tummy
If i need to undergo invasive treatment and if i should be hospitalised there how do i manage without my family as i told you earlier i stay alone here
Can anyone share their experience at mayo clinic who have had surgery

Thanks for all the advise. Big Hug to all brave people here. One more challenge to me is i dont drive so probably i may have to take a bus or hire a cab. Here its very difficult without driving. I am worried as to how much all this may cost. But i am surely going to call those folks and once again my besties thanks for keeping up my spirit

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. Thanks

@mayoclinicseeker

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. Thanks

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Pavitra, I have sent you a Private Message! Katherine

@mayoclinicseeker

@katemn: I do have a first name and all of you can call me Puffs or Pavitra. I know it feels good to be called by our name.

Today i went to a GI practioner she did not own up my case she rather advised i should go to India as they have seen this disease better there than here :(. I had high regard for doctors untill i faced this issue. No offence to genuine ones but most of them are treating us like their business units which unit can make more money).

List of my worries:

I trust Mayo clinic but how do i know which of the 3 is better for my case
How easily they are reachable as this needs close monitoring and reassurance
How easy it is to schedule and cancel appointments
i dont have lung issue and tb is in my tummy, most of the doctors have seen it in lungs can i find someone who will treat it in tummy
If i need to undergo invasive treatment and if i should be hospitalised there how do i manage without my family as i told you earlier i stay alone here
Can anyone share their experience at mayo clinic who have had surgery

Thanks for all the advise. Big Hug to all brave people here. One more challenge to me is i dont drive so probably i may have to take a bus or hire a cab. Here its very difficult without driving. I am worried as to how much all this may cost. But i am surely going to call those folks and once again my besties thanks for keeping up my spirit

Jump to this post

Pavitra, be sure to keep us posted on your progress. You can fly right into Rochester MN then can rent a hotel room that is walking distance from Mayo Clinic. You can google all these things. I have stayed in hotels in Rochester .. not fancy but close by. You will not need a car. Let us know how you are doing after your Mayo Clinic phone calls! Hugs! Katherine

Hi All,

I am moving out from this place and moving to a new town. Taken opinions from almost all doctors here 1 infectious diseases doctor, 2 GI’s, 1 primary care, not feeling great my friends have not been hearing anything encouraging. Hope dark tunnels always lead to bright ends. I will keep you posted on whats happening. Last week has been a painful week lots of pain and intermittent bleedings . Taking life as it comes and i will fight it back. i will fight it back. This is mantra i have been saying and hope to live by it. New town, new people, new doctors and loads of holiday doesnt look very promosing, but you know what all your posts and messages make me wait for a new day and make me more positive. Iam sure to win my way :).
Hope new place will bring in peace. Luv you all and tight hugs. Take care.

Regards
Mayoclinicseeker

Liked by Dee

Pavitra, please do keep us posted .. what a tough time you are having .. you are in our thoughts! Hugs to you! Katherine

Anybody knows any doctors in Nashville (Fraklin) Tennassye please help me with their names even primary care but good one is ok.

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