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Missmom

Entire family has mono

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Well, on our way home from a much needed spring break vacation the entire family all started running high fevers with aches and pains and extreme tiredness, sore throat, etc.... I assumed it was viral because of how fast it hit. My ds12 is currently on augmentin and that was doing nothing to help this. Anyway, his pandas symptoms have seemed to improve as his immune system is busy trying to fight off this new virus. So, after four days of fever, I decided to take my daughter in just to see what it was, and she tested positive for mono. I did not want to pay multiple co-pays until I knew what we were dealing with. Anyway, just wondered if any of you have any advice on what to expect as far as pandas flairs after mono, or epstein Barr Virus. Just trying to prepare myself. Should I just keep giving Motrin while the fever persists, what about abx.... I can increase his dose if necessary. Just want to try stop this from turning into another bad pandas episode.

 

Any advice is appreciated.

Thanks

Linda

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You have to treat the virus. Do you see a LLMD, ND, DAN doc, ART or someone like that? They understand that treating the viruses are very important. Good luck.

 

No, we see a ped. Neurologist who has been very helpful with treating his pandas symptoms. We live in south Mississippi so Lyme is not really a factor here. There are no Lyme friendly doctors anywhere close. How do you actually treat the virus other than treating the symptoms while the virus runs it's course? What are my options?

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I had Mono, I was told you are not supposed to take antibiotics when you have Mono - this happened to me and I broke out in red bumps all over my body. I would recommend cheking with your doctor. They gave me a steroid shot for my throat which had exploded in white lumps. Otherwise no treatment, it took almost a year for me to fully recover. I felt quite sick for at least two months. Sorry you are going through this.

 

And I don't mean to be argumentative but as an aside Lyme and other tick borne infections (rocky mountain spotted fever, tick relapsing fever, etc)are found everywhere in the U.S. due to bird migration, though it is more prevalent in certain states/regions.

Edited by Hopeny

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l-lysine worked wonders when my DD had EBV last year. Tried other antivirals - did nothing. 3 days into giving l-lysine, she felt so much better. You can google l=lysine+EBV or l-lysine+HHV and find pubmed and other research that supports its effectiveness. Three weeks of lysine and she was back in school full time.

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When you have mono and take amoxicillin or ampicillin (Augmentin too b/c it is amoxicillin) it can cause a measle-like rash and/or hives. A lot of times people discover they have mono b/c they are put on amoxicillin for strep or ear infection and then break out in a rash, which causes some drs to test for mono.

 

A good anti-viral that may help is lauricidin (monolaurin).

 

Colleen

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l-lysine worked wonders when my DD had EBV last year. Tried other antivirals - did nothing. 3 days into giving l-lysine, she felt so much better. You can google l=lysine+EBV or l-lysine+HHV and find pubmed and other research that supports its effectiveness. Three weeks of lysine and she was back in school full time.

 

 

sorry LLM -- i know i've asked before -- did you experience/hear of any negative side effects of lysine. ds is back at school this week after 4 day sleeping fever/sickness last week. he is still very tired when he comes home. i'm wondering how much EBV should be in my mind.

thanks.

 

forget it -- i found our old conversation.

 

 

 

curious to those that have had mono -- i think i always remember fatigue being the main symptom -- is that correct? i'm thinking ds is moving into abnomal tiredness after being sick. he had 2 days of fever/sickness; 2 more days of no eating and sleeping all day; 2 days of recuping --mellow but seeming to get better; 2 days back at school but very tired when came home - not able to do much. today very hard to wake up (after early bedtime last night) and VERY whiney about too tired to go to school. i'm wondering if i should be thinking mono -- ??? i don't think he should stil be so tired.

Edited by smartyjones

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l-lysine worked wonders when my DD had EBV last year. Tried other antivirals - did nothing. 3 days into giving l-lysine, she felt so much better. You can google l=lysine+EBV or l-lysine+HHV and find pubmed and other research that supports its effectiveness. Three weeks of lysine and she was back in school full time.

Was this your pandas daughter that had mono? Did her pandas flair from this until you started her on the l-lysine? I have not noticed a rash with the abx, but will keep my eyes open for that now. Thanks.

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Smarty - I didn't see any side effects. Over time, lysine can cause anxiety and that's why we only did 3 weeks at full dose, then moved to every other day for another two weeks before stopping completely. I didn't see any anxiety but wanted to be cautious. Don't know what to say about whether EBV should be a concern for you but if I recall, it takes awhile for the body to make antibodies to EBV so I think we waited a month after we suspected EBV before we did a blood draw to confirm. Tried to give her body time to fight it and that didn't work. So maybe google on how long you should wait before testing. In the meantime, you might try CoQ10 to help with energy. It's expensive in most places but I've found an inexpensive one from Full Circle in my grocery store (Big Y but not sure you have them by you).

 

Missmom - my daughter is not my Pandas child. She had a CamK of 179 and fits some Pandas symptoms, but has never had strep and she doesn't get full blown OCD - she gets stuck on worry thoughts, but they come without any compulsions, not even mental ones. So I haven't pursed a Pandas label for her. She has been treated for chronic infections and her behaviors certainly get worse when her body spends a lot of resources on fighting something, so I could probably get a PANS dx for her but her issues are better explained in my mind from methylation problems. EBV did not exacerbate her behaviors. (she was too tired to misbehave anyway). But I have to add the my Pandas/lyme son does not get a ramp up in behaviors from viruses. Only bacterial infections. I know some kids do flare from a virus but my kids fortunately don't. If you're worried about this, I'd put more emphasis on anti-inflammatories (motrin, enhansa) instead of increasing antibiotics.

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I'd put more emphasis on anti-inflammatories (motrin, enhansa) instead of increasing antibiotics.

 

 

Oh LLM -- you know i can't let things go without jumping on them -- it was first a cup of coffee that moved into a dinner -- now i'm going to owe you a beach vacation!

 

 

have you used enhansa? did you see JAG's recent post on it? i'm thinking that may be something to try in the summer.

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I'd put more emphasis on anti-inflammatories (motrin, enhansa) instead of increasing antibiotics.

 

 

Oh LLM -- you know i can't let things go without jumping on them -- it was first a cup of coffee that moved into a dinner -- now i'm going to owe you a beach vacation!

 

 

have you used enhansa? did you see JAG's recent post on it? i'm thinking that may be something to try in the summer.

 

I only tried enhansa for a brief time. Our LLMD gave me samples but I tried it last summer when I was ODing DD on methylfolate and so I never saw any benefit. I tried it for DS a few times but motrin seems to work better for him. Jill promises me I'd love it. I believe her. But like her DH, mine is on a crusade to reduce the pills I make the kids take, so Enhansa is a back burner thing for me. I have 17 pills left in my sample bag - let me know if you want them. (Or I can bring them with me when we meet at the beach! :D )

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You can also mix enhansa into juice. I'm a big fan of it too. My mono exhaustion was beyond anything I have ever experienced. I was at a conference when I got the dx and I would lgo back to my hotel to sleep In between exhibit hall breaks. My dr originally thought it was strep. Could not manage more thank two hours of activity. Exhaustion is not even a strong enough word for it. I felt like my body was broken down.

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This is the strangest thing we have all experienced. Our main symptoms have been high fever that just keeps returning once Motrin wears off and cough. We have been more sleepy than normal, but it's not like we are sleeping all day. The incubation period is 4-7 weeks so it seems odd we all came down with this within 24 hours of each other. Also, my pandas son is such a germaphobe that we never share anything. I just can't imagine how we would have spread this around the family because it can only spread through bodily fluids. All I know is that my daughter did have a positive mono test so here we go again.

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MissMom.......I think you can expect anxiety and sep anxiety with EBV......also almost like depression but different....absolutely zero, nada energy......which was our major with oldest dd9 year or so ago. I second the Monolaurin or Lauricidin as an antiviral.

 

We have been decent this winter with colds and infections. Middle dd8 who has been much worse with Pandas for a long time is also on it. She had the flu or some other virus twice....we think with high fevers. 102-103. I know this sounds bad, but we do not treat with Advil during these types of viral fevers. We have just seen them do too much good with "resetting" the immune response and clearing out anything that might be lingering. These two fevers this winter have been great for her and she has recovered much faster on the DAN protocol along with letting the fevers run their course. We just keep her pumped with fluids, soup or whatever.

 

All in all 15 months post DAN treatment start up......we are happy where we are at.

 

PM if you questions.

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