Help I think 13 yr. daughter might have CFS

Discussion in 'Fibromyalgia Main Forum' started by jrcole, Apr 17, 2007.

  1. jrcole

    jrcole New Member

    Hi, I was diagnosed in 03 with FM mainly have pain in my lower back, neck and shoulders plus migraines but taking topamax has greatly reduced them. Anyway my daughter has always required extra sleep and has suffered from frequent headaches with dizziness for over a year but last Sept she had mono which I didn't relaize she was really sick because besides being tired she seemed fine and school had just started so I assumed it was from having to get back into a routine. I took her to the doctor because of being dizzy and they did lab work and found out she had had mono. Anyway she seemed to get better, she has allergies also and suffered from a few sinus infections during the winter but otherwise healthy until mid Feb. she complained of a bad headache and being dizzy (like she had been getting in the past) except this time she has not had a day since it started in Feb she has been totally headache free for a whole day she has gone a partial day for a few days but not a whole day the dizziness comes and goes and she is extremely exhausted no matter how much she sleeps. She can sleep for three hours in the daytime and then go to bed at seven and sleep until six and still be tired. she has been complaining of being cold and it is hot(I am alwys cold so it must be hot if I am hot) We have had cat scans done, blood work eveything and nothing shows up. no meds make a difference and the pain pretty much stays right in the center of her forehead. We have even started allergy shots. She has missed a ton of school and doctors want to right it off as depression. any advice would be appreciated.
    Sorry so long
    Also her knees hurt all the time.
  2. deliarose

    deliarose New Member

    My CFS was triggered by mono. I was exhausted all the time, slept round the clock and was extremely cold (wore thermal underwear in bed regardless of the season).

    There is no test for CFS, but it sounds like her mono has lasted well beyond what one would expect, so she could certainly be a candidate for CFS.

    She is young and hasn;t been ill that long. She has a good chance of recovering.

    Knowing what I know now, here's what I would do if I could turn the clock back: Good food, REST. If it was me, I would even consider pulling her out of school if need be.
    Then I would consider boosting her immune system with Vitamin D, attacking the EBV with Olive leaf, and possibly Transfer Factor (discuss this one with your doc). Using supplements for energy: CoQ10, NADH, Magnesium and D-Ribose.

    Also, search on teh board for threads involving mitochondrial dysfunction and methylation.

    If you go thru past posts, search for Sara's mom. she had a young daughter who recovered.

    Be very wary of antibiotics. They can cause havoc in a pereson with CFS.

    Good luck

  3. deliarose

    deliarose New Member

    You might want to check out a product called Recuperation. Some fibro ppl say it really helps with the pain.
  4. tjsmom

    tjsmom New Member

    Dear Judy,
    Hi, Kim here, TJ's mom - TJ is 12.5 and was dx in Feb with CFIDS - he had EBV MONO in the 4th grade, and had mostly good days after that, although it took so long to "recover",and then this year was AWFUL - all the classic CFIDS symptoms, but of course his doc began with ruling out everything else. It wasn't until I got online and began researching, found a "good doctor" on the list, and contacted her that he was DX - you can read other posts of mine to see a little more of our journey, but I will tell you, his symptoms sound a lot like your daughter's. If she can't make it to school every day, ask about home/hospital tutoring to be provided by the school on days she can not attend. One key question in dx TJ was if the symptoms got worse after excercise - if they do - it's NOT DEPRESSION!!
    We had TJ's 25-D and 125-D levels tested ( complicated draw) and that locked the DX - once we removed all sources of added Vitamin D from his diet, he improved significantly as far as muscle/joint and bone pain. Please note that his 25-D level is LOW - but because of the ratio with 125-D, it showed a need for LESS VitD rather than more as one might expect.
    If you want to talk more about what we have experienced so far - just post a time when you can meet in chat, and I will try to meet you there, and we can exchange email addresses - my heart goes out to you - there is nothing worse than being a mom and not being able to make it all better.
    thoughts and prayers for you and your daughter
  5. deb_46

    deb_46 New Member

    Even if you have had it checked and told it was OK, it's a good chance she is not. The ranges have changed as far as what is considered hypo now and most docs are not aware. If you had it checked and have her labs and don't mind you could post them here with ranges and let me take a look. If you don't have copies of her labs I really recommend that you get them. You can also post them on and ask one of the mods there what they think. They are great at decifering labs and giving great advice on what's going on.

    If you have not had thyroid labs done I really recommend that you do. The tests that she will need are TSH, Free T3, Free T4, Anti-TPO and TgAb. Make sure it is the Free T3 and T4 and not the regular T3 and T4, very important.

    If she is hypo, like as not that's why she ended up with mono. That's what happened to me, was untreated hypo due to ignorant docs which put such a strain on my immune system I ended up with a horrific case of mono plus candida plus adrenal fatigue all from untreated thyroid. I had the joint pain as well that quickly resolved when I got on thyroid meds as well as the being cold all the time.

    Good luck, I hope she gets to feeling better soon.

  6. TerryS

    TerryS Member

    Hi Judy. I've got a 16-year-old daughter who fell ill last September with mono...very acute case. Actually, let me back up a year. The year prior to the mono, she had had a very bad year. Dizzy, sudden weakness, etc. She was very active with dance team, cheerleading, dance lessons, etc. There were multiple times at dance that she had to sit out due to dizziness and weakness. Also, had to sit out at some of the games (while cheerleading) for the same problem.

    I took her to the doc. We "decided" jointly that it must be a blood sugar issue (hypoglycemic). We put her on a very healthy diet with little to no junk food and lots of water. It seemed to help somewhat, but didn't completely take care of the problem.

    In the meantime, I was having problems myself with dizziness and heart flutters. Had to go to the ER because of the heart acting up and scaring me. The ER doc heard what she thought was mitral valve prolapse. Then found out that my dad also has mitral valve prolapse (never knew until he told me).

    When my daughter was a toddler, she had a mild heart murmur and had problems with fainting from time to time. She seemed to have grown out of this, and no doc since then had heard any murmur.

    After my ER doc heard my MVP, I had my daughter's doc listen to her heart, and the doc confirmed that she thought my daughter also had MVP.

    I took the two of us to Birmingham to the Mitral Valve Prolapse Center. They confirmed via sonogram that both of us have MVP. They also confirmed via other testing that we both have "dysautonomia" which can cause all of the dizzy, weakness, etc. So, I just kind of wrote off all our problems to the MVP/dysautonomia.

    Then, fast forward to August 2006. I fell ill with severe exhaustion, weakness, dizziness, extremely achy body, achy throat and headaches, and I had to go out on a medical leave from my job. My labs tested positive for "chronic/reactivated Epstein Barr Virus". Five weeks later, my daughter fell ill with a seriously acute case of mono. Fortunately, she was on a one-week break from school that week, so by the time school started back, her fevers were down pretty well. She went back to school and has continued to go this whole time. She had a rough time. Sleeping through some of her classes, collapsed in the middle of the hall one day, has had to leave early of multiple days, etc.

    She is much improved from last fall, but she still continues to fight this thing. She naps almost every day after getting home from school, sometimes as much as three hours. She had to completely drop out of all activities and has not been able to resume them. She has bad days/weeks, and now often has almost normal days/weeks. I think she is just having a very slow recovery from the mono. At this point, our doc says she also has to have a diagnosis of CFS because her EBV panel showed "old infection".

    I'm hopeful she will get her life back, at least to the point she was before the mono. The MVP/dysautonomia will always be there. She hasn't been diagnosed officially, but I think she also has FM. My eldest daughter (25 years old) has FM and has had it since elementary school. Again, not officially diagnosed, but same crap I've had since my childhood, so we know what's going on. My eldest tested positive for ANA last fall. She needs more blood work, but has no insurance right now as she is a college student.

    I think our girls have the same problem!!! Maybe it's more than "dysautonomia"...heck, I don't know. But the fact that they were both dizzy for the previous year and then came down with mono last fall...that's such a coincidence.

    Anyhow, hope your daughter starts improving. I put mine on a good vitamin regimen, and our doc put her on Ritalin recently to help with her energy for the time being. She says the Ritalin helps her somewhat, and I can definitely see improvement in that area.

    Please keep us posted on your daughter's progress.

  7. tkeelan

    tkeelan New Member

    You may wish to check into Dr. St. Amands Guaifensin protocol.

    If you have not read this book ... you may want to do so.

    The book is available now from earlier pubs.
  8. bunnyfluff

    bunnyfluff Member

    I have been Dx'd with FMS/CFS and chronic EBV for quite some time. My EBV titers stay near 2500. I have exhaustion, joint pain, migraines, depression, you name it. What I actually have is undiagnosed Lyme.

    My Lyme tests came back neg last year, not uncommon. If you look into it and do some research, you will find it to be true in many instances. You can even get it from a mosquito bite, and very few people get the rash. Here is a good link:

    I had a microbiologist/ Holistic D.O. find it "live" in my blood under a microscope. I started taking the Samento a week ago, and I am already seeing marked improvement. Before with my other Dr's (rheumy, neuro, etc.) I got drugs, but contined to get worse over time.

    The Lyme can cause EBV titers to continue to be high, as it throws off the immune system balance. This is not uncommon when you start to read the stories of others. I am only sorry I have lost so many years of my life already to this disease, but happy I am getting cured.

    Please also look into this for her sake.

    Yours in Health,
  9. Lichu3

    Lichu3 New Member

    There's a lot of work looking at HHV-6. Look under search here or google for "HHV-6 Foundation" or (website).

    Cat003, one of the posters here, came down with mono in her 30s and also recently tested high for HHV-6. She is now possibly going to be in the Stanford trials for antivirals.

    I also came down acutely with CFS, dx'd with mono, and am also turning out to have high HHV-6 titers and possible active infection. HHV-6A may reactivate EBV.

    Not all folks with CFS have HHV-6 and the treatment is not clear yet, but I think it's worth finding out if it may play a role in your daughter's illness given cat's and my own illness patterns.
  10. iforgetto

    iforgetto New Member

    Dr.David S. Bell, MD has been treating Young people with CFIDS for years ,he has a few books one is A Parent's Guide to CFIDS: How to Be an Advocate for Your Child With Chronic Fatigue Immune Dysfunction, and a free one on his web site!
    and here is a youth and parents,site
    [This Message was Edited on 04/19/2007]
  11. mrdad

    mrdad New Member

    I'm so sorry that your Daughter is not doing well.

    When in Grad school, I was hospitalized with a

    severe case of Mono that forced me to drop out of

    School for a semester. It took months and months

    to get back to "normal", but it seems I never did ach-

    ieve my former energy . It just may be a lingering effect

    but it is difficult to know?

    Another thought would be to have her tested for LYME

    disease. My Daughter became ill in highschool with

    it and it took a while to diagnose the problem. She is

    30 y.o. now and is doing well considering but the dis-

    ease is more common than one would think. Please

    consider this even if your Daughter has had little con-

    tact with the "great outdoors"!



    [This Message was Edited on 04/19/2007]
  12. Nanie46

    Nanie46 Moderator

    It sounds very possible that your daughter has mono if everything else has been ruled out by a good Dr. I have FM and my Dr helps FM and CFS patients. I am getting better with antiviral medication and the elimination diet following delayed food allergy testing. I urge you to take a look at the info on these sites: and I'm sure the last thing you want is for her to be on a long list of meds to treat her symptoms. It makes sense to go after a cure based on the cause. Good luck!

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