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Still have mono. Immunologist and Infectious Disease Consults?

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Posted 3/18/2013 4:28 PM (GMT -5)
I've had mono now for way too long due to immune suppression from Remicade. I'm considering seeing both an immunologist and an infectious disease specialist to just bounce ideas back and forth to see if they have any ideas of things I might try. Do you think this is a good idea?

I think the immunologist could help me analyze my immune system better, and see if there are any levels that indicate that something needs assistance.

I think the infectious disease specialist could help me analyze and treat the chronic mono.

To me it seems like a good idea. What do you think?
Posted 3/18/2013 4:43 PM (GMT -5)
I personally think you are overanalyzing it too much. The Remicade is weakening your immune system, which is enabling your Mono. I don't think there is anymore to it than that. I know it is a really tough situation and I feel very sorry for you but it is my opinion that you aren't going to get any further than the basics I already outlined. I hope I'm wrong.
Posted 3/18/2013 5:12 PM (GMT -5)
Gary has a point it does sound very simple. But the thing is we are not doctors and we don't really know. I say the chances are slim but they exist so give it a try!
Posted 3/18/2013 5:29 PM (GMT -5)
IMHO, it may not be a bad idea to see an immunologist.
I found this info online:
http://www.webmd.com/a-to-z-guides/infectious-mononucleosis-cause

In addition to the discomfort it's causing you, it's possible you may actually infect others.

None of us has the knowledge to advise you but, IMO, it can't hurt to get as much info as possible and you might find a doctor who can help you to feel better.

It would probably be a good idea to ask if the doc has experience treating people who have taken immunosuppressants.

Have you discussed this with your GI? Any recommendations?
Posted 3/18/2013 8:49 PM (GMT -5)
I have not discussed this in detail with my GI yet. A month ago I was feeling amazing, better than I had in a very long time. My gf then contracted the mono, and then I kissed her (unknowingly at the time). AND, apparently I either got it back, or it came back on its own. I saw my GI a couple weeks ago, but was feeling well then, so I didn't mention all of this.

Tonight my gf asked in passing if I'd be better off just having surgery, if I'd feel better... but I don't want it, and all of its risks.
Posted 3/19/2013 11:07 AM (GMT -5)
Go see a Lyme Literate Rhematologist. He should also be clued in on other infections like EBV. EBV can effect your gut. It is ridiculous that you are on remicade instead of on the medicines you need for your known infection... and someone should be trying to find out if the remicade or EBV opened the door for anything else.


Good luck to you.. try to treat the source instead of just removing the problem.
Posted 4/6/2013 10:50 AM (GMT -5)
Thoreau: I am following your saga here, because my daughter is in you "boat". An infectious disease doc can analyze interrelationships in your blood work and may help. We have consulted one and are in the process of figuring this HPV/Remicade relationship out. Also working with our GI. No insights yet, as we are only 1 week into acute Mono that is quite threatening. Daughter's immune system in overdrive trying to dampen an enlarged spleen, gigantic lymph nodes, fever, tonsil/adenoid infection, fatigue,crazy labs on liver, SED rate, WBC high, etc...
I think getting a few more big brains on your condition is a fine idea.
Posted 4/6/2013 11:15 AM (GMT -5)
Katmom, I'm so sorry to hear your daughter is in this boat as well. Sometimes I wish there was a way to just step outside my body for a little while and get things done, then resume the sickness... if I have to. It is definitely a battle between taking these medicines and fighting side effects from a dampened immune system.

I will put any updates I have onto this forum then, to make sure you have something to compare to. As PathogenKiller noted, seeing a Rhuematologist (however it's spelled) is probably a good idea as well. I have a call in to my GP to see what he thinks about this. He mentioned earlier this week that he thought it may be a good idea. Now he has my labs in his hand, so he can make the judgment call I guess.

Good luck to you.
Posted 4/6/2013 11:58 AM (GMT -5)
ya, i agree with gary - and kinda what you are saying only different - i think you need to take a look at what your symtoms are, figure out if you can live with them (seems like they were not that serious but maybe i'm wrong) and step away from the drugs, the docs and all the distractions that go with it - give it a rest - just let your body take care of things -

of course if someone said that to me, i'd probaly think they were an idiot !
Posted 4/6/2013 12:24 PM (GMT -5)
Lol... so are you saying you think of yourself as an idiot, Soystud?

It's like this at the moment: I could not work because of the pain I had from mono, and the need for sleep in the morning. This happened the day before my Remi dose, so they said postpone it. I HAVE to figure the mono stuff out. But, I have to pay attention to my colon and how it's feeling as well. If I need some pred or uceris to get through this a bit then maybe so be it. I need at least a couple/few weeks off of Remi.
Posted 4/6/2013 12:58 PM (GMT -5)
"Lol... so are you saying you think of yourself as an idiot, Soystud?"

not all the time - when i'm sleeping i'm actually quite intelligent !

Posted 10/23/2013 2:03 PM (GMT -5)
Just wondering, Thoreau, if you ever followed up with a specialist for your mono. My granddaughter is 23 with mono for two months. I keep telling her to see an infectious disease dr. to see another opinion. Did you have any success.
Posted 10/23/2013 9:14 PM (GMT -5)
I did see an infectious disease doctor. He had blood work drawn to check for actual viral replication of the EBV (Epsteiin Barr Virus) that causes mono. It came back as not-replicating, which meant my body aches were from something else... which we're now attributing to Remicade.

Mono is tricky because a lot of regular GP's don't run such a special test, and when they pick up signs of mono it can actually just be from a previous infection which left antibodies... or something along those lines. The basic thing is to see an infectious disease doctor, which helps tremendously in understanding and getting an accurate picture of the disease/infection state.
Posted 12/14/2021 10:36 AM (GMT -5)

Thoreau said...
I've had mono now for way too long due to immune suppression from Remicade. I'm considering seeing both an immunologist and an infectious disease specialist to just bounce ideas back and forth to see if they have any ideas of things I might try. Do you think this is a good idea?
I think the immunologist could help me analyze my immune system better, and see if there are any levels that indicate that something needs assistance.
I think the infectious disease specialist could help me analyze and treat the chronic mono.
To me it seems like a good idea. What do you think?

I know it is an old post, but I just began Remicade this year....everything good...on remission....but my abs lymphocytes are out of range....to high....up to 5000...already 3 months like that....I just saw an hematologist and he did some tests.....and also I have been thru 3 courses of antibiotics....cough, throat is red but no fevers....as soon as I stop after a little while the infection comes back....I am thinking that maybe I got mononucleosis?....EBV??....I really hope is something like that because the alternatives are not good LOL.....my Dr wants me to stay in Remicade but I dont like that thing, I never had these problems before. Did you issues with Remicade got better with time??

Post Edited (kannassee) : 12/14/2021 10:48:32 AM (GMT-7)

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