Notgivinup Posted October 15, 2009 Report Share Posted October 15, 2009 But my POTS symptoms are better. Actually better than they've been for a long time. I'm on an antibiotic, but before I even started it, I felt better POTS wise. I am afraid to jinx myself by saying this. The only other different thing I've done is start zyrtec. I have no allergies at all. But I remembered something the other night. About 3 years ago I woke up with hives in the middle of the night. For a week or so I kept getting them every night. I just took benadryl & never thought twice about it. They went away.Now that got me thinking. Hmmm, well I don't ever flush, but I do have some strange spots on my back that have been there for 3 years also. Flat brownish spots. Could be anything, but now I'm thinking MCAD. IDK. It's so confusing. Quote Link to comment Share on other sites More sharing options...
futurehope Posted October 15, 2009 Report Share Posted October 15, 2009 Interesting. Was your doctor %100 sure you had a UTI? Did he find out for sure you had bacteria by culturing your urine? Did you have symptoms? My PCP thought I had a UTI because he saw white blood cells and red blood cells in my urine and suspected it. I knew better (because of my interstitial cystitis), and waited for my urine culture results before starting antibiotics. I was right. I did not have a UTI.I'm asking because I suspect in me, my "reaction" to certain foods and allergens inflames my bladder. It is called Interstitial Cystitis. It feels like a UTI, but there are no bacteria involved. Maybe it has to do with my bodies' reaction?In any event, I am on raniditine (a histamine blocker) daily before bed, and hydroxyzine HCL (an antihistamine that also helps interstitial cystitis). The combo keeps me feeling good.It's possible you do have some allergy reaction going on which exacerbates POTS symptoms?BTW, antibiotics can make the bladder feel better even if you don't have a UTI because they supposedly have anti-inflammatory properties. I learned this from my IC (interstitial cystitis) forum.I hope you are closer to good health because of your awareness. Keep us posted. Quote Link to comment Share on other sites More sharing options...
Notgivinup Posted October 15, 2009 Author Report Share Posted October 15, 2009 Interesting. Was your doctor %100 sure you had a UTI? Did he find out for sure you had bacteria by culturing your urine? Did you have symptoms? My PCP thought I had a UTI because he saw white blood cells and red blood cells in my urine and suspected it. I knew better (because of my interstitial cystitis), and waited for my urine culture results before starting antibiotics. I was right. I did not have a UTI.I'm asking because I suspect in me, my "reaction" to certain foods and allergens inflames my bladder. It is called Interstitial Cystitis. It feels like a UTI, but there are no bacteria involved. Maybe it has to do with my bodies' reaction?In any event, I am on raniditine (a histamine blocker) daily before bed, and hydroxyzine HCL (an antihistamine that also helps interstitial cystitis). The combo keeps me feeling good.It's possible you do have some allergy reaction going on which exacerbates POTS symptoms?BTW, antibiotics can make the bladder feel better even if you don't have a UTI because they supposedly have anti-inflammatory properties. I learned this from my IC (interstitial cystitis) forum.I hope you are closer to good health because of your awareness. Keep us posted.The gyn just said something about a PH balance? Can't remember exactly what he said, but I think he said that shows the beginning of an infection. The symptoms I had were frequent urination, and one time a little burning. You're right I should of waited to take the antibiotics. He did say he was sending it out for a culture, but in the meantime gave me bactrim (sp?). I wonder how hard it will be for me to get a dx of MCAD?I really do feel better on the antihistamines. I quit all other POTS meds. Or maybe I'm just going thru a semi-remission. I guess only time will tell, but right now I'm enjoying feeling "normal" So scared it will come back.Thanks for your thoughts. Is there any easy way to find out if it's MCAD? Of course I could quit the zyrtec, for a while, but no way! I don't want to feel bad again. It's like these days are so precious, I can't even spare one. LOL Quote Link to comment Share on other sites More sharing options...
juliegee Posted October 16, 2009 Report Share Posted October 16, 2009 Glad you're feeling better with the zyrtec. It's quite remarkable that it had such a beneficial effect. Google urticaria pigmentosa re. the spots on your back. If that seems to fit, you probably should see a dermatologist to confirm. There is a condition similiar to MCAD called mastocytosis & some patients have the UP spots with that, in addition to the MCAD/POTS symptoms. Zyrtec is a part of the treatment. A good place for your doc to start firming up a DX is to order a blood test to check your serum tryptase level. If that's high, mastocytosis is likely. If that's low...you could still be looking at MCAD. Futurehope's comments are interesting as interstitial cystitis is commonly found with MCAD. AND, zyrtec is a treatment option for that as mast cells become inflamed in your bladder. Hope you keep feeling better & better Julie Quote Link to comment Share on other sites More sharing options...
Notgivinup Posted October 16, 2009 Author Report Share Posted October 16, 2009 Wow, thanks guys, you sure know your stuff. I did google pics. of UP, they look the same to me. I guess a derm. should be my next doc.visit. Thanks for all the info, you guys are invaluable. Is there a MCAD forum I could join? Tried looking, but no luck. Quote Link to comment Share on other sites More sharing options...
daisy Posted October 16, 2009 Report Share Posted October 16, 2009 Hello -I started getting hives earlier this year...just from touch. I was diagnosed with dermographism and MCAD. I have been taking Zyrtec ever since and it has taken care of the hives. I was also diagnosed with interstitial cystitis a couple of years ago. I can't tell you how many times I was treated for a UTI when I didn't have one. The IC feels exactly like a UTI when it flares....I had heard of the connection between IC and MCAD (wow, too many abbreviations in this note....IC, MCAD, UTI....lol!) but never really pursued it...I was just happy to have an answer! Hope you feel better....Oh, by the way, there are pretty accurate over the counter tests for UTIs now in the drugstore. They are the ones used in primary care physician's offices. They won't be specific to the type of bacteria you're dealing with but it will give you an indication if you have one or not. Quote Link to comment Share on other sites More sharing options...
futurehope Posted October 16, 2009 Report Share Posted October 16, 2009 Daisy,Word of caution, since I do not know exactly which UTI test kit the stores currently sell. I once got my own test kit, and with the interstitial cystitis, I usually come out positive on the white blood cell count, but negative on the nitrites. In the test I took, since I was positive in one (the white blood cells) and negative in the other, I still wasn't sure I had a UTI until I was cultured by a doctor.Apparently, for me, I have to come out positive in the white blood cells, and positive in the nitrites to show an infection on those "home" tests.Anyway, the home tests are not accurate for me. Quote Link to comment Share on other sites More sharing options...
daisy Posted October 16, 2009 Report Share Posted October 16, 2009 Thanks futurehope - that's good to know..... Quote Link to comment Share on other sites More sharing options...
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