12 y/o with prolonged mono...need advice

Discussion in 'Fibromyalgia Main Forum' started by KimDC, May 31, 2010.

  1. KimDC

    KimDC New Member

    I used to post here when I thought I had CFS. I'm one of those people that turned out to have Lyme and am currently receiving treatment for that.

    My question is about my 12 y/o daughter. She's had mono for 2.5 months. Her recovery has been very, very slow. She's missed 10 weeks of school. She tested positive for Epstein-Barr in mid-March. Her IGM was 3.7 and her IGG was 3.7. Recent tests showed that her IGM is down to 1.9. Her ANA was positive, but all other immune tests were negative. I've thought about Lyme, but her only symptom is fatigue (no neuro symptoms, no joint pain, no recent exposure to ticks).

    I can't find any information on prolonged mono in pre-teens/teens. All the literature says that kids recover in 2-3 weeks and that a small percentage develop CFS.

    Is there anything we can do to prevent CFS?

    Does anyone else have experience with teens and mono?

    I appreciate any advice or experiences.

  2. SnooZQ

    SnooZQ New Member

    My daughter had 10 weeks in bed w/mono at age 17. She was so weak her eyes were crossing (we had never seen that before), yet the ped. kept running the same chem panel & telling us, "some kids just take longer to recover."

    Then came the depression screenings & hints of malingering. But that was not the problem.

    My concern was that there was some "drain" on her immune function that was retarding her recovery. Since our family is rife w/food allergies & doc had been reluctant to run tests, I pushed until the tests were run. DD turned out to have multiple food allergies, in addition to a number of different celiac antibodies.

    The miracle: within a week of strict dietary change, I found DD sitting at the kitchen table working on her calculus. Had been too weak to concentrate or even read, previously. She was able to return to school part-time a few days later.

    We were referred to an internist for further testing, including several X-ray series & tests to rule out cancer, mostly because our ped did not believe that food intolerance could cause extended mono. Thankfully all of those test results were good.

    DD did end up with a fairly severe post-mono CFS that plagued her for about 18 mos. Starting college was a horrific experience -- she needed to use a mobility scooter, because her stamina was shot.

    CFS not uncommonly occurs after protracted bouts with mono, according to my grapevine (not scientific studies).

    I'm not saying that your daughter necessarily has a food allergy problem, but I would look for anything that could be a drain on her immune system. A simmering pre-existing infection, gut dysbiosis/yeast, community exposures, mold sensitivity or environmental allergies, personal & family histories are a good place to start.

    Best wishes.

    [This Message was Edited on 05/31/2010]
  3. KimDC

    KimDC New Member

    Thank you for your replies, snooZQ and gb66. I think testing for food allergies is a good idea because I have food sensitivities and my daughter has severe seasonal allergies. I hadn't thought of allergies as affecting her immune system, also.
  4. victoria

    victoria New Member

    Having mono for a year when I was 18-19 yo was my downfall, was never quite right after that. After 3 months thinking I was recovered, I got the type of meningitis associated with it, took 6 months to recover from that as there was nothing they could give at the time. Worst thing (IMHO) was back then nobody was suggesting a good supplement/vitamin support or even giving advice that maybe I should take longer to convalesce after that. I think both would have helped.

    As it was, I kept going in cycles of not being able to do much, recovering enough to feel good and push for a year or 2, then fatigue where I couldn't do much. Just never bad enough to warrant attention, especially when mono tests always came back negative. Perhaps if it had been more dramatic symptoms? But probably would've been accused of malingering. I pretty much got that dx anyway I think.

    Best I ever felt was the 7 year period I was pg, had 2 kids, & breastfeeding. Now I have Lyme and lots of other things likely that are hard to test for...

    best advice I can give is get her to pace herself, give supplements and a really healthy diet...

    all the best,

  5. richvank

    richvank New Member

    Hi, Kim.

    As you probably know, EBV is one of the herpes family of viruses. It is not possible to rid the body of these viruses. The best we can do is to put them into their latent state so that they do not cause symptoms. A large majority of the population is carrying latent EBV virus in their bodies, and so long as it remains latent, there is no illness.

    I cannot give individual treatment advice, because I am a researcher, not a licensed physician.
    However, I can give you some information that you may be able to use in cooperation with your physician.

    There are three ways that may work to put the herpes family viruses into latency. The first is to raise the level of glutathione in the cells. The reason is that the herpes family viruses code for a substance known as glycoprotein B. These viruses must complete the formation of this glycoprotein in order to make the outer shells they need to move from one cell to another. This requires formation of disulfide bonds. Having a good glutathione status will prevent these bonds from forming. Some people have taken NAC (N-acetylcysteine) to support the synthesis of glutathione. There are also other ways to build glutathione, including the liposomal glutathione supplements, MaxGXL, and OSR#1.

    The second is to raise the ratio of lysine to arginine in the cells by taking lysine as a supplement. The herpes viruses make proteins that are rich in arginine, and having a high lysine to arginine ratio interferes with that.

    The third is to increase the methylation capacity, which may help to methylate the viral DNA and silence its expression. This one is more speculative. SAMe (S-adenosylmethionine) is a supplement that will raise the methylation capacity.

    In addition to these, the Life Extension Magazine some years ago carried an article reporting that taking Tagamet (an over-the-counter histamine H2 receptor blocker used to stop acid production in the stomach) will block the signal that EBV is using to shut down the immune system's response. This will reportedly activate the immune system to knock out the viral infection.

    None of these methods get much publicity, because there are no patentable drugs involved, and thus not much profit. Hence, doctors are largely unaware of them.

    Nevertheless, I recommend that you consult with your doctor if you want to consider using these approaches, and also get your doctor's advice about dosages.

    I hope your daughter gets well soon.

    Best regards,

    [This Message was Edited on 06/02/2010]
  6. KimDC

    KimDC New Member

    Thank you, Rich. I did know that EBV is part of the hepes family, but I did not know any of the other info. that you gave me. I think NAC is a great one to try, as my daughter has OCD and there's been case studies showing NAC curing OCD.