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Virus Causing Set Back...advice?


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Hi all,

I have been on in a while a doing pretty good. Minus the heat in AZ making it hard to stay hydrated. Anyway, I got sick about 2 weeks ago (sore throat, nasal drainage, SWOLLEN glads, and bad gi pain) with what my primary doc said was a virus and it would pass. Well 2 days later I was back to normal...but then I woke up again and it was worsen then ever. My glands were really swollen and my gi pain was really bad. It been coming and going but wed night things got much worse.

I was having a pretty good day wed until I ate dinner. About 2 hours after dinner i all the sudden knew i was going to throw up..no naeusa or cramping but i know my body. Sure enough as soon as i stood up I was running for the bathroom and barely made it before loosing all my dinner and then some. Since the eating has caused a lot of pain from my upper left abdomen to my lower abdomen. Its a mixture of stabbing and burning pain...ive never had the buring pain before and its unsettling.

Since Wed night my bp has been lower then ever and same with my hr. My hr rarely goes below 80 and yesterday (thurs) it was between 62-85 all day and mainly in the 60's, which concerned me. So today i called my primary and told her nurse i need to be seen and also called my GI. Has anyone experienced that?

My fear is that becasue my pots started after mono, which is a virus, that this virus is causing more and/or worse symptoms :( Time and a doc will tell i guess... I cant see my neuro until end of july.

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How long ago did you have the mono? If it's been within the last six months, it's probably playing with the POTS. I had mono many years ago. I saw an infectious disease doctor and he told me not to consider pregnancy for a couple of years because it might take my body that long to get over mono. I have never been diagnosed with POTS but I know that a double round of flu has set my POTS son backwards. He is nowhere near the level of functioning he had in December of 2012. Cardiologist has run other test because he is wondering if his POTS is being caused by a suppressed immune system.

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I got my POTS after a bad bout of mono. I haven't stopped getting swollen glands since I came down with mono. When I do too much or get sick, I get swollen glands in my throat, armpits, and abdomen. The throat lymph node issue is pretty chronic. The armpit issue is my body telling me to slow down. Sometimes it is bad enough that I can hardly stand clothing touching my armpits or laying my arms against my body. I spent months trying to figure out the cause of my abdomen pain when those lymph nodes first started swelling. No doctor thought of lymph nodes until it was finally gone, but now he feels that is probably what it was. It would get worse when I ate but wasn't dependent on the type of food. I'm guessing just the added pressure on the lymph nodes from my stomach being more full was causing the pain. I still get this intermittently and it always comes after the throat and armpit lymph nodes swell.

When the pain becomes too much, or the flare up lasts more than a month, I do a round of steroids. 2 weeks titrated works best for me. We just have to be careful using steroids and they cannot become a frequently used tool. However, two or three times a year hasn't hurt me so far and has allowed me to beat some pretty bad flares that involved swollen lymph nodes.

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Thank you two for the input! My first mono was in 2003 and it was awful for 6 months, ive never been the same. then it came back in 2008 and thats when the pots really set in and things took a turn for the worst. the last 2 years the GI issues from mono have slowly been getting better. Mid july will be 1 year since my official dx of pots. When i get sick with a cold or virus my pots flares up but nothing like this before...i usually get tachy and bp goes up and things start to resolve with hydration...but nothing is helping.

My primary is out of town for 3 weeks so i saw her partner last week and today I called to get in again and she said she doesnt know all of my history enough to help me...at least she was honest...i guess. So i called my GI and i can be seen by her pa on tuesday.

Im hoping this isnt another mono flare up but that sure what it feels like :( im pretty scared its going to make my pots worse. I see my neuro at the end of july and wants to put me through the autonomic tests again so well seen then. Just feeling discouraged...

Thanks for your input!

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Have either one of you been checked to see if this virus is still running lose in your body? There is testing for this. A doctor ran this test on my son to check for the mono virus. However a different virus showed up and the naturopath doctor put him on an L-lysine supplement. This is an amino acid that helps shut certain virus down. A true immunologist or infectious disease doctor can help with these problems also.

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Good suggestion looneymom. I had the basic test as well as the DNA test -- expensive but worth it to be able to rule out something! I highly recommend the DNA test to determine the virus levels of EBV in your system.

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Aw sorry for the long wait for the doctor jkoconne :( I hope they have a cancellation and can get you in earlier.

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