Can someone help me?

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by JennMarie, Sep 24, 2013.

  1. JennMarie

    JennMarie Member

    I am taking charge of my health. :) I have been reading medical information regarding EBV and based on a lot of what is going on with me, and am afraid I might be heading down the CFS route and want to do whatever I can to avoid that. I read that so many CFS suffers had some sort of trigger period (for lack of a better term), and I'm afraid I'm at that point and want to be proactive in doing everything I can to avoid this debilitating disease.

    Basically right now I'm exhausted. Have been since early July. Gave birth 11/2012. REALLY heavy periods following that. Contracted a nasty HSV 1 virus February 2013 (confirmed culture). Continued heavy periods. Started aggressive training for triathlon I did July 2013. Gave blood in June (while on a VERY heavy period BTW). Early July I was hit with extreme fatigue and general yuckiness. Assumed it was stress (marital difficulties at the time) and/or a b-12 deficiency so I started supplementing (and laid down the law with the hubs LOL). That didn't get better. In August I lost most central vision in left eye, which promted a few dr visits. After several visits and many tests, I have "intermediate mono" and iron deficent anemia. I want to be REALLY agressive with the mono because a) it's my FOURTH time having it and b) it seems that CFS can be triggered by both the herpes virus and EBV and since I've had both recently and am generally unwell right now anyway, I don't want either settling in and starting CFS for me.

    Basically here's what's going on:
    Extreme fatigue with alternating excessive sleep and insomnia
    Something in my retina that is a result of a virus (can't remember name), like lesions that are supposed to heal on their own but some university study is having success treating them with Valtrex
    Hair loss
    Chest pressure
    Sore Tongue

    So could someone look at some of my tests results and give me some general guidance? I would be really grateful. I think you guys are undoubtedly more well read and knowledgeable about EBV/CFS, etc. than my family practice doctor or eye doctor! Basically everything has been run. Thyroid tests all perfect, Lyme negative, HSV no active infection, vit b-12 good. Oh, and my hormones are in the tank. Basically perimenopause levels but I'm only 36 and they were good in February. Undetectable levels of estradiol and progesterone.

    EBV
    EPSTEIN BARR VIRUS EARLY ANTIGEN D AB (IGG) 1.19
    EPSTEIN BARR VIRUS VCA AB (IGM) < OR = 0.90
    EPSTEIN BARR VIRUS VCA AB (IGG) >5.00
    EPSTEIN BARR VIRUS (EBNA) AB (IGG) >5.00

    IRON, TOTAL 27, 40-175 mcg/dL
    IRON BINDING CAPACITY 401, 250-450 mcg/dL
    % SATURATION 7, 15-50 % (calc)
    FERRITIN 5, 10-154 ng/mL

    Interestingly, ferritin was checked in February and was 61.

    My hemoglobin is 11.1 (hematocrit low, MCV low, RBC count normal). Also there was one elevated marker, the cardio CRP at 6, but I don't have any other cardiac risk factors at all.

    So basially the doctor says that I have later stage mono and it should clear on its own and I'm a little iron deficient and should supplement with OTC iron pills. I had to fight him to start Valtrex and he only gave me 1 week, which I'm taking now. The neuro opthalmologist had suggested the Valtrex originally because it can help the eye resolve quicker but I don't see him again until next week. I can ask him for more Valtrex.

    So first, is the EBV diagnosis correct do you think based on the results above? Is the fact that this is my FOURTH episode of mono and the fact that it's presenting TOTALLY different this time than it did when I was younger concerning? Is this the start of CFS, and if so, what steps should I take to combat it early on? Should I demand a longer course of Valtrex and if so, how long? Or is it just garden variety mono (again...) compounded by an iron deficiency?

    Also, does anyone know if mono can cause iron deficiency? Or is that just likely due to blood loss and over exercise?

    In the meantime, I've ordered monolaurin and floridix.
  2. Soul*

    Soul* Active Member

    JennMarie, I don't know about test values but the first time I saw a doctor I was send home with was supposed to be an iron deficiency too and should be back on my feet in no time according to the neurologist.

    Later on my gp said my iron levels from that test weren't worrysome at all. Whether or not that neurologist send me home thinking it was all in my head and I'd be fine if he gave me pills that supposedly would make me better we'll never know but it never made me feel better that's for sure.

    EBV has probably been the onset for me too on top of other things. Though I never knew I have had mono. Only heard that I tested positive on EBV a few years ago and looking back it does match with the time the first signals started to appear. I've had bold patches on my head to a few times, years later though.

    All I can say is take plenty of rest and take plenty of time to take all the rest you need. It seems that there is a bigger chance to get better in the first two years if you do not push yourself. No guarantees but well worth to take your bodies signals extra seriously.

    Try not to live ON the edge but a few steps away from it so you don't get knocked of when life does give you an unexpected extra push. Don't continue with activities until you feel tired but try to take rest BEFORE you reach that point. I'm still learning that but it does help.

    Maybe some others on here can be of more help with the details you are asking for.

    I could also recommend checking if you have some food intolerances. Pacing and diet have helped me at least with managing the pain levels in such a way that it has become tolerable whilst I used to be in pain 24/7 in such a way I could hardly walk or ride a bike anymore or even hold a pen.

    Take good care and hope you find the best possible way to manage.
  3. mbofov

    mbofov Active Member

    Jennmarie - I don't know the answers to your questions re EBV. However, your very heavy periods and hair loss (and some of your fatigue too) could be due to hypothyroidism. I had some verrry heavy periods in my early 40's - lost 1/2 my blood at one time. I was so white - I looked like a ghost. The doctor ended up doing a D & C. I guess he didn't know what else to do. He never checked my thyroid. I learned this later about the connection between low thyroid and heavy periods. Also, hair loss is another symptom of low thyroid. I later ended up taking Armour thyroid.

    Someone can have "normal" results on the standard thyroid blood tests but still be hypothyroid. Many doctors now go by symptoms, as well as blood work, and they don't all agree on what are "normal" thyroid levels - see stopthethyroidmadness.com for more info. Check your morning temperature. Low temp is very often associated with hypothyroid.

    Do educate yourself about this. Many docs only prescribe synthroid, which only has T3 or T4 (I can never remember which) but many people need both, and for that you have to take something like Armour thyroid or Naturethroid, or westhroid - dessicated thyroid extract.

    But again, educate yourself first before talking to your doctor because chances are he or she will follow the standard party line on this - may say your results are just fine so need to dig deeper.

    Definitely blood loss could be the cause of your iron deficiency. I think mono causes iron deficiency. And of course iron deficiency will make you very tired and it's easily fixed,

    Another good thing to do would be to see an integrative medicine doctor. They're generally much more knowledgable about treating hypothyroidism and EBV and CFS in general. If you go to acam.org, you can find IM doctors in your area. Scroll over "health resources" at the top of the page and you'll see a search feature to find IM docs in your area.

    Four bouts of mono is a lot of course. It sounds like your immune system is weak. You might try something called Moducare, it's OTC. It has helped my immune system a lot. It's a very interesting product. I used to have almost continual sinus infections and this has helped me so much, after trying almost every herb out there with poor results.

    I think it would help to get your hormone levels back up. Bio-identical hormones are the best way to go. The major study done several years ago which showed the potential dangers of hormone replacement therapy were done using horse hormones - premarin, something none of us need. They did not study bio-identical hormones. I would find a doctor who knows about this and who can help you there. I have read of women whose energy picked up once they got their hormone levels normalized. Again, an IM doctor should be able to help you with this.

    If you over-exercise, this can raise cortisol levels. If you've had a lot of stress, this raises cortisol too, and high cortisol can cause all sorts of problems. Again, this is something that should be checked out. I don't know for sure, but I strongly suspect that my CFS was compounded by severe stress. I don't know if it was the cause but definitely a contributing factor.

    You've got so much going on, if at all possible, see an IM doctor. I've had to pay out-of-pocket very often to get any help. Most standard MD's are not very good with these issues.

    Mary
  4. mbofov

    mbofov Active Member

    A few more things: The best test for measuring cortisol levels is the Adrenal Stress Index Test - it's a saliva test which uses samples taken 4 times during the day/evening, which shows how cortisol levels rise and fall. Most doctors only order a blood test which only shows cortisol at the time the blood is drawn. Again, because of your high exercise and stress, I think this is something that should be looked at. If your cortisol levels are high, they can be normalized with something called Seriphos (phosphorylated serine). I found it was best to take in the morning.

    But again, checking out your cortisol levels and adrenal health would be best managed by an IM doctor.

    I was helped a lot by a chiropractor who does muscle testing. He found my weak adrenals and helped me so much - gave me an adrenal glandular product by Standard Process - Drenatrophin PMG. Weak adrenals will make you very tired and my energy started to pick after a couple of days of starting the Drenatrophin, though I had to take about 3 or 4 times the regular dose because my adrenals were so weak.

    You've got a lot going on. I think there are solutions but fear your regular M.D. won't have the answers. Good luck -

    Mary
  5. mbofov

    mbofov Active Member

    Jam, thanks for your kind words.

    Jenn - one more thing (again! :): if your adrenals are stressed, that can cause physical fatigue. Besides adrenal glandulars, pantothenic acid is very important for adrenal health. And minimizing stress, caffeine, alcohol and sugar which all deplete the adrenals. Meditation is excellent for stress relief.
  6. lea

    lea Member

    You may want to look into lyme or tick diseases.
    It would be wise to learn about them since most physicians will not properly diagnose you.
    good luck
  7. jumpshot

    jumpshot Member

    jean marie, I've had CFIDS for l5 yrs. been to 2 or the best drs. in the USA, the latter Dr. Guyer in IN> has helpe d me more although no one can figure out a constant sensation of fireants and sandpaper (dry) in my mouth throat in broncials loads of Neurontin helps, see my last post for energy help (adenosine and Nadh and 5 hr. energy if you tolerate it I do, when I get off of famvir I get sore throats a lot more , later jumpshot in KY