fatigue, myalgia/arthralgia, ASO 487, C4 12, ANA speckeled 1:80, fever...help

[girodrn]

I am a mom of a 17 yo daughter who has had a difficult year.  In the past 6 mo - 1 yr, she has been almost constantly sick.  It started with her 3RD bout of mono (yes, all verified by IgG/IgM and monospot).  She has since had continuous fatigue, myalgia, arthralgia, small amt of weight loss, pale, low grade fevers at night, and multiple infections.  Our family Dr has ran multiple tests with some out of range results.  Her C4 is low at 12, her ANA is 1:80 speckled (checked twice), ESR is normal, H/H is always "borderline low" (love that physician term), WBC and RBC trending downward with normal platelets, Reumatoid factor negative, DsDNA negative.  She recently started to fight a Streptococcus G infection with full doses of Levaquin, then Zithromax, then Cleocin, and now after an ASO of 487 she is on the end of a 40 day dose of Penicillin.  (she does not have rheumatic fever...already checked)  Our last Dr she went to said to go to an infectious disease/immunologist (she was a rheumatologist).  She ran down a laundry list of "possibilities", but that is not helping her NOW.  She is a sophomore in college who carries 10 - 12 credit hours and lives at home.  She only has enough energy to go to class, study (at home) and sleep.  She cannot enjoy being a teenager or being at college.  I just want to help her.  I don't know where to turn or other possibilities.  We just cannot keep stabbing at possiblilities in the dark... she will never get help or find a definitive answer.  I would appreciate any help you can give.  Thank you very much...Angela (a worried mom in WV)

[dkaf]

A related discussion, Help with Chronic Fatigue was started.

[NZDutchie]

Hi from New Zealand.  I feel so sorry for your daughter and thought to pass this on: my daughter contracted Mononucleosis a few years ago. The only treatment reccommended was rest and extremely high doses of Vitamin C, the non acidic, slow release kind.  It helped.  Because this is a virus and stays in the blood, flare-ups are to be expected, especially at times of stress and illness. My daughter was born highly strung and for her to learn to relax is what we call 'a mission', but it as essential. CFS is a life-quality thief, regardless of how old or young one is, and becomes a source of frustration, stress and depression, all of which in turn negatively affect the condition so it becomes a viscious circle. I know, because I have Fibromyalgia and the requirements for managing that are the same. I don't know about the USA but here in New Zealand FMS is 'treated' at Queen Elizabeth Hospital in Rotorua in the North Island.  The hospital itself was built in the Second WW and so it shows its age, but the treatments are akin to being in a Spa.  One is also taught how to manage the condition mostly without medication. In my experience, the available and fairly experimental medication's side effects are worse than the conditions. Mostly, for my family, a change in lifestyle, outlook on life, a Low GI diet and a lot of kindness and consideration are the best things for a patient to feel better. When we take a good Bvit.complex and 3x daily 1000mg. of Vit.C as well as Vit.D in winter when sunshine is not so strong and available, all help.  I hope this might give some encouragement in a very hard time.
Clementine.

[PlateletGal]

Hey... an old discussion !

I'm the co-community leader of MedHelps fibromyalgia / CFS board. There is also an EBV board and I frequently post there as well. Feel welcome to post there if you'd like and you can meet other people who can relate and give you input for your daughter.

I would also consider googling, "Co-Cure's Good Doctor List" to find your daughter a physician in your area who knows not only how to properly diagnose CFS, but also treat it as well.

[minnow1]

My daughter had mono 4 years ago and has the same symptoms.  Some doctors make us feel like she is faking.  We are finally working with an infectious disease doctor and a rheumatologist.  We have had tons of tests.  Some days she cannot get out of bed.  I have had to carry her to the bathroom, bathe her, and even feed her.  A week later she is up and about.  All of her tests come back normal.  She is 16 and is missing out on life.  

[girodrn]

Spoke with my daughter's PCP today.  She ordered another round of blood tests (c4, c3, c50, ASO titer).  she wants her to get a pneumococcal vaccine.  She then wants her to have a kidney and skin biopsy.  the plan after that is to sent her to a specialist at a university hospital...the tentative diagnosis ........... LUPUS

Somehow, my daughter and I knew this.  It just took some time to get the Dr to listen.

anyway...if there are any thoughts...I would appreciate them....thanks   :)

[PlateletGal]

http://www.wfae.org/wfae/nav1024.cfm?cat=18&subcat=93

Charles Lapp, Dr. Laura Black and Kim McCleary talked with host Mike Collins about the push for recognition of CFS and its diagnosis, treatment and impact. The program is now available on the station's web site (link above).

[PlateletGal]

I forgot to mention earlier something you can do right now and see it helps your daughter. Dr. Paul Cheney has a basic treatment plan for CFS. You can google those exact words and you will find the link. He mentions B12 injections, magnesium and other supplements and some prescription drugs to treat chronic fatigue immune dysfunction syndrome. I would suggest asking your daughter's physician first... maybe about the supplements only and hopefully that will help your daughter in the meantime.

[PlateletGal]

When I read your daughter's story it sounded almost exactly like mine. I had mono when I was 18 years old and right after I recovered, I had another illness. After that, I had infections of all sorts. I had strep throat several times so physicians' decided to remove my tonsils. After my tonsils were removed, I had sinus & respiratory infections. I was always on antibiotics for one thing or another.

I have CFS and I also have a high ANA titer --- very high 1:640 (speckled pattern). Often I feel like I have the flu. My doctor, a specialist in Endocrinology, told me that people who have CFS with a positive ANA titer can sometimes have symptoms of lupus.

Anyway, it sounds like your daughter's physician has done all of the necessary labwork. You may want to check if she did a copper level, serum protein electrophoresis, a cortisol level (often CFS have low cortisol levels) and uric acid (we often have low uric acid levels as well). Also, make sure at least two tests for lyme disease were done (often you get false negatives). I know the physician did a sed rate -- if it is CFS.... CFS patients' normally have low normal sed rates, also low blood pressure. However, you may want to get a CRP done -- it is a more sensitive test that also measures inflammation. My sed rate was normal, but my CRP was high.

You may want to check google and type in "Dr. David Bell" + "symptoms of CFS" and "Dr. Paul Cheney" for more information on CFS. I am currently being treated on the Marshall Protocol (you can google and find their website... type "Marshall Protocol" + "success stories") It is a new research therapy and two physicians' recommended it for me. Also, if your daughter gets diagnosed with CFS.... there was a very recent research study done at Stanford University and 85% of CFS subjects are 100% better after taking an anti-viral medication, including the co-founder of Petsmart!

Sorry this is so long... = )

[girodrn]

thank you alchris and plateletgal.  I could only fit some of the information on the post so i put as much pertinent information as i could.  she has had x2 neg lyme tests.  her RBC count has been "borderline" anemic ... low normal but never falls below normal values.  she has started to take multi vitamins.  her thyroid tests are normal.  she has not had CRP/uric acid/copper etc, but i will request them at her next appt.  we are waiting now for an appt with an immune/infect disease doc.  the one part that may fit with "lupus like syndrome/symptoms" is the low C4 complement.  I have read various places about a C4 deficiency and immunosuppression.  I have asked her primary doc about CFS/fibromyalgia and she does not think it is that, but the more I read, the more i think it is some type of Immune deficiency syndrome or CFS or Fibromyalgia.  The bottom line is we do not care what the name is, she just wants to feel better.  if there is any other things you can think of to help, i would appreciate it.  i check the site daily, and will update any new information we have...Thanks

[alchris]

Goodness I had mono only once and it wiped me out completly.  I still suffer from chronic fatigue.  Your poor daughter had it 3 times which is a complete drain too many times on the body.  It is possibly that she is still suffering the aftereffects.  When I had mono i went for weekly B12 shots which grealty helped.  Has she been tested for auto immune diseases or thyroid.  Get her vitamin levels checked.  This will tell if she does have a defineccy which might help her greatly.  Was she ever checked for Anemia since all this, this too can arise from her problems.