I have just been diagnosed with active TB. Can anyone share their treatment experience and perhaps recommend an infectious disease Dr at Mayo?
Interested in more discussions like this? Go to the Infectious Diseases group.
Welcome to Connect, @cubs0816,
Since it is a disease that mainly affects your lungs, here is some information about Mayo Clinic doctors who specialize in treating tuberculosis TB:
I encourage you to view this discussion on Connect, "Looking for others who have latent tuberculosis (TB)" https://connect.mayoclinic.org/discussion/looking-for-patients-that-have-latent-tuberculosis-and-know-about-their-medicines/ and I'm tagging Mentor @windwalker as she might be able to introduce you to a few Connect members who've shared their TB experience.
Could you share a few more details, @cubs0816? What symptoms did you have that led to the diagnosis of TB?
Thank you for the reply. Night sweats, cough, headache, chills. GP thought pneumonia and diagnosed a med pack with no result followed by prednisone. Once prednisone was complete – symptoms returned. Chest CT yesterday (attached) led to diagnosis.
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@cubs0816 – I'm sorry to hear you're having such issues. I'd like to preface this by saying I am not a medical professional by any means; I'm just a regular gal who had a (now-presumed-to-be) false positive TB test recently when trying to find answers for chronic health issues.
Keeping that in mind, here's some thoughts:
1. First and foremost, if you do indeed have active TB, the most important thing to do right now is STAY ISOLATED. A truly active case means the state health department will be getting involved and conducting an investigation into any significant contact you've had with anyone since the start of your symptoms; the more you are "out and about" the more extensive the investigation will be and the greater the risk that someone else may become infected.
2. I find it interesting that it sounds like prednisone actually improved (albeit temporarily) your symptoms. Prednisone/medrol are steroids, and they lower your immune system response (because they're treatments for inappropriate or overreactive immune system response); as a result, if you do in fact have TB, your infection should have spread significantly/become significantly worse on those medications. I had been set to start a medrol dose pack for a suspected autoimmune disease, but had to put that aside once the positive TB test came back (see my post https://connect.mayoclinic.org/discussion/any-false-positive-tb-blood-test-results-out-there/) — your prednisone use should have been even more dangerous, not helpful, with TB. Maybe consider getting tested for autoimmune diseases (which WOULD have seen improvement on Prednisone/medrol); it's just a simple ANA panel your primary care can run, or wth a referral to a rheumatologist. A negative panel would largely rule out an autoimmune condition.
3. The regimen of medications for TB (both inactive/latent or active) are very long and pretty hardcore. Your CT scan results indicate that TB is a possibility, but by no means a certain conclusion. The CDC recommendations are acid-fast bacilli stains of three sputum samples several hours/days apart for official, most accurate diagnosis of active TB. While everything certainly seems to fit, and you want to get started right away, TB treatment/diagnosis is a lot more involved than a misdiagnosis of a sinus infection or UTI for example, and once you start treatment (of any kind), your chances of getting a fully confident 100% diagnosis decrease should it be called into question, and you'll have trouble determining whether subsequent test results are different because one result was wrong (and who knows which) or because you're on or have been on XXXX medication. Because the treatments are so hard on your system, I just recommend you make certain you're absolutely sure and well-tested on that diagnosis before you start down that road. Do your required cultures, take a TB blood test and examine your risk factors before surrendering to that as the answer. See more at https://www.cdc.gov/tb/education/corecurr/pdf/chapter4.pdf and https://www.cdc.gov/tb/publications/factsheets/testing/diagnosis.pdf.
4. Again, not a medical professional, but I'm not sure that your chest results necessarily indicate "active" TB rather than latent/inactive OR reactivated. Once you've had pulmonary TB, even often whether you were aware of it at the time or no (it's possible to have had it and felt poorly for a few days in the past but then your body fought it off effectively enough to tamp it down briefly), your body will likely always show the impact of that infection, however brief or intense, on your lungs — it wouldn't just go away. So, the nodes and things noted in your report could from my understanding (again, not a doctor) be leftover from past TB, and not active TB. Or, it could be a past TB infection becoming reactivated, which would be valuable information to know when developing treatment.
Again, not a doctor, and you have a lot of the symptoms and even a positive CT scan for TB, so it absolutely is still a possibility, and maybe you've already had additional more conclusive testing that you didnt mention. I would just want to make sure it's the right diagnosis so A) you're not being treated with the really potent TB stuff if that's not your problem and B) you'e not missing/delaying a diagnosis of what your problem really is. I'm unfortunately falling asleep here, but I will check in again tomorrow and make sure what I said makes sense lol. Night!
Thank you Peabody88. I will be following up with an infectious disease doctor and Pulmonologist today so I will keep you posted.
After being quarantined in the hospital for 3 days, the quaniferon gold (spelling) came back negative. I am still awaiting an explanation Re: symptoms and the CT images. Just thought I would keep you up to date.
@cubs0816 – Oh dear! I was afraid that might happen. I've been thinking about you — hope you're feeling better and they figured out what's going on! Please feel free to share an update even — and maybe especially if! — it's just good news that all's been cured! Hang in there!
So here we are. After spending a week in quarantine Ibwas released. Here is what I know: no lung cancer! Tests are trickling in but it is believed that I do not have TB but perhaps Blastomycosis. Blastomycosis is known to mimic lung cancer and TB. I cannot stress this enough and hope everyone who is told they might have lung cancer or TB advocate for themselves and look at Blastomycosis.
Although an official diagnosis will not be for a number of weeks, I opted to start as a proactive measure the taking of Itraconazole. This is prescribed for the treatment of Blaxomycosis.
Lastly – the power of prayer is the most power tool we have!
Praying for you!
Hello all- I am a mentor for the lung health and lung cancer groups. I was sent this today and thought that you might all like to read this.
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