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Hello, My first post. EBV AB VCA, IGG >8 Left my job. Sick.

Discussion in 'Immunological' started by ratdog, Sep 3, 2012.

  1. ratdog

    ratdog

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    Hi,
    Thank you for letting me join the forum. I almost feel comforted in reading some of your posts, it makes me feel not alone. My story would take too long to tell in full, so here is the short version. I really need your help on what to do next. I am a 49 yr old white male, I have worked full time since age 18, and never had to miss much work. I have never been unemployeed. My health background, I have had high blood pressure since age 19, life has always been a bit stressful for me. 12 years ago, I was told I had hypothyroidism and put on meds for that, about the same time I told my dr my sex life was in the dump, so she checked my testosterone levels several times and found my levels very low, so she started me on testosterone injections. I have always had in my adult life what dad called "a nervous stomach", and my doctor one day said I had IBS. Eating cheese or drinking milk makes it much worse. I have always worked retail, standing on my feet, and my knees hurt all the time, popping and crunching if I climb stairs or squat, my mid to lower back, feet and legs hurt/ache as well. Rhuemy dr told me after tests I have ostioarthritis, and I take pain pills for that. I have toenail fungus, athletes foot, and jock itch very often. I have been given all sorts of meds for this, it always comes back. I had a very emotional period last year. My son had to be placed in a group home, and that broke my heart. Around January this year, I began feeling very tired all the time, and nervous. I took a week off of vacation, spent most of it sleeping, or lying in the bed. The week passed, and I dreaded going back to work because I was still very tired. I went to my dr, told her what was going on. She gave me something for anxiety, and something to help me sleep. She ordered many blood tests. The only remarkable tests were cortisol. At 8AM my blood cortisol was 4.3, that was low, but still in the normal range. At 4PM blood cortisol was .4, really low, and at 8PM blood cortisol was .3, also low. So I get sent to an endo for tests for Addisons. He said my numbers were in the low normal range. He let me try hydrocortisone, and said if my cortisol being low was causing my fatigue, I would feel improvement with the hydrocortisone. It did very little, if anything to improve my fatigue. So I go back to my GP, she tests me for hepatitus, all neg. I get a phone call and asked to come in again, and she said she wanted to go over some test results.
    EBV AB VCA, IGG >8.0 Flagged as strong positive
    EVB AB VCA, IGM <0.2 Negative
    Mono Test was negative
    AntiNuclear Antibodies Direct Negative
    RA Latex Turbid. Result 10.3 Unit IU/ml Range 0.0-13.9
    She told me that I had mono recently, that is why I am tired, and according to the test results, I was in the "convalescing" stage. I told her I had never had mono that I was aware of. I am so confused. I still feel overly tired, stay in bed a lot, I used all my vacation time and sick time and I have been out of work now for 16 weeks. No income. I cannot understand what is wrong with me now. I picked a cloudy day last week and mowed my yard on a riding mower, all I had to do was steer. It totally wiped me out for two days. I am sorry my post was so long. I am at the end of my rope. I cannot draw unemployement because I am sick. But if your dead your surviving spouse and child get a check. Your advice would be appreciated.
  2. Gamboa

    Gamboa Senior Member

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    Hi Ratdog,

    I don't have much advice for you at the moment since I am not feeling very good myself. I just wanted to welcome you here to PR and to let you know you are not alone. We are all in various stages of trying to figure out what is wrong with us and how to treat all the various symptoms. Hopefully someone else here is a bit more alert than me and can give you some help.

    Bye for now,

    Gamboa
    merylg likes this.
  3. Ema

    Ema Senior Member

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    Hi Ratdog - Welcome to the forum!

    I am sorry you are struggling.

    If I were you, I would follow up on that morning cortisol. Under 6 is generally diagnostic for Addison's disease on its own and at the very least should have warranted an ACTH stimulation test - preferably a low dose one. I would find a new endocrinologist because I think you have been poorly served by the one you saw. Most endos don't see Addison's patients and don't know how to properly diagnose and treat the condition which can cause all the symptoms you describe. It needs to be properly ruled out (or more likely, IN) before you get saddled with an ME/CFS diagnosis because Addison's is completely treatable.

    If your doctor didn't know how to diagnose Addison's, your trial of HC was probably insufficient and not timed properly as well. HC needs to be split dosed across the day to mimic the way the body naturally produces it. You may also need fludrocortisone depending on your aldosterone status and electrolytes.

    Please get a second opinion!

    Ema
    ggingues likes this.
  4. Ema

    Ema Senior Member

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  5. ratdog

    ratdog

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    Thanks Ema for the reply, I was afraid my post was getting too long, so I did not tell the whole story with the endo. I was given the ACTH stim test, after driving 1 hour in rush hour traffic, at 8AM. Pre injection cortisol was 8.4 one hour later was 12.7 I was started on 20mg of hydrocort per day, I felt no change, I begged to get the dose increased, so it was raised to 30mg per day. I took it as 15mg at 8AM, 10mg at 2PM, and 5mg at 4PM. I got no change at all in my energy levels. Blood Pressure went up a little, and my feet swelled. I feel less jittery off the stuff. Just no energy at all.
    taniaaust1 likes this.
  6. Ema

    Ema Senior Member

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    So you failed the stim as well and your doctor still didn't diagnose you with Addison's?

    Many men (and honestly women too) need as much as 40 mg in the first 6 months after diagnosis to rebuild cortisol reserves. Your dosing wasn't awful but could have been improved.

    Did you get your electrolytes tested? Aldosterone and renin?

    Far be it from me to "diagnose" but you have Addison's by every objective criteria. There is no question in my non-medical opinion and not replacing cortisol in this case can be lethal. I hope you can find an endo that will recognize this and treat you properly for this life threatening condition.

    You might want to join this group as well:

    http://www.addisonssupport.com/

    Dusty is a real inspiration for all those with Addison's.

    Ema
  7. Ema

    Ema Senior Member

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    Also, the energy problems are probably from a lack of balance with thyroid hormones and sex hormones. They all work together. It's vital to test the free thyroid hormones - FT4, FT3 and RT3. The TSH is basically useless for most of us especially after starting thyroid meds.
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    you sound alot like a cfser to me.
    I would look into ways of treating ebv, google dr lerner and antivirals, you will get alot of hits on that. Also check out the antiviral threads here.

    good luck,
    cheers!!!
  9. taniaaust1

    taniaaust1 Senior Member

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    It isnt uncommon for those who have ME/CFS to have issues with cortisol insufficiency too. By the EVB sounds to me like you could have more then just low cortisol going on and sound like a ME/CFS case. Im in a similar boat as you.. had abnormally low cortisol on 24 hr urine testing (several times) and taking replacement for it didnt help me.

    Maybe antivirals for the EBV (finding a ME/CFS specialist into antivirals) would be a good way to go.

    I dont know what country you are in but many countries have a sickness benefit/allowance for those who are sick so cant go onto unemployment but arent bad enough to be on disablity pension. There should be some payment you could be on, its just finding out what it is...

    In my case I stayed on unemployment for 8mths but just keep getting sickness certificates till they started to refuse those. (I should of complained higher up cause I was then forced to work a few hours per week which made me sicker.. my disability case was going throu appeal). If you post what country you are in..maybe someone could more advise you... its essential you arent pushing yourself at this point of time in the early stages of the illness.

    Note.. maybe you have post viral syndrome.. that used to be known to often clear up within 2 years but nowdays comes under CFS. If you have that.. you also need your rest.

    Maybe contact a social worker to help you work out what to do about getting gov payments ....
    merylg and heapsreal like this.
  10. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Wow, so sorry for all your suffering. Not sure how unemployment works in your state, or any. Not sure if they are al the same? I don't think so. I think most states do not allow collection unless you are laid off?

    Have you checked out the co.cure.org website for a good Dr? Although sounds like yours has done some good tests, but if you have CFS, I think it would be best to find someone more familair with the illness.

    http://www.co-cure.org/USA_NC.htm I have another website I could give you, if interested, just get my attention, and start a conversation with me.

    GG

    PS Hope someone jumps in here, and is more helpful.
  11. ratdog

    ratdog

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    Thanks GG so much for the doctor list. This may be helpful in the future if I do not start to feel better as she thinks. Have a great day.
  12. ratdog

    ratdog

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    Thanks to all for taking time to read and share advice. As far as the Addison's go, I hoped that was my disorder, because I knew the hydrocortisone would help. My endo said from the start your am cortisol is much higher than someone with Addison's, he said someone with true Addison's would have a blood cortisol between 0-2 at most. In the beginning he said I could have mild adrenal defeciancy, but as time and tests went on, he said he did not think so, he said your symptoms are much, much worse to be justified by your blood work. So, since the only change I feel taking the hydrocortisone is higher blood pressure, a little more anxious, and swelling in my feet, is there any reason to take it at all? I live in North Carolina, and there are no benefits here for being sick and out of work. I am 49 and have never had to sign up for unemployeement, but I would if I could now. Going up and down the basement steps one time makes me feel like I just ran a one mile race. My wish is to get well and work again, but that does not seem to be happening. Do you think it would be a waste of time to try and file for disability?
  13. Ema

    Ema Senior Member

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    I'm really sorry but your endo is not correct on this issue. Cortisol of 0 would make you dead. PLEASE find a new one that understands Addison's. I know they are hard to find but it will be worth it - make some calls and find one that actually treats regularly and up to the latest standards.

    I'm not saying that you may not also have ME/CFS but that can't be determined until you are properly medicated for Addison's and hypothyroidism (possibly hypopituitary as well taking into account your low T).

    Think about it from this perspective - You had a test that artificially stimulated your adrenals with 250 times the amount of ACTH that your body would ever make on it's own. Your adrenals were not able to respond properly to give you a level that would even be sufficient for an AM cortisol by itself after being stimulated with more than 250 times what your body would normally produce on its own. Your adrenals are broken. The ACTH stim test misses a lot of people with Addison's disease but it has "caught" you and any endocrinologist worth anything would know this.

    The reason to take HC is because it will literally save your life. If you get into an car accident or other extremely stressful event and are not able to make enough cortisol (which your stim test has already beautifully demonstrated), your blood pressure will drop to nothing and you may die. It's called an Addison's crisis and it can be lethal. You must be educated and carry an injection kit and wear a med alert bracelet at all times.

    You may be able to file for disability but that is not based on your diagnosis but your functional limitations. Getting a proper diagnosis is a good first step though and I encourage you to research the process both here and elsewhere on the Internet before getting started. I would also recommend finding a lawyer in your area that specializes in disability to advise you of the pitfalls of which there are many. The process takes most of us 2-3 years.

    Ema
    merylg, Wayne and Enid like this.
  14. Enid

    Enid Senior Member

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    Just to say welcome - there is so much good advice and informed people here (a great help to me).
    merylg likes this.
  15. lnester7

    lnester7 Seven

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    Welcome, lesson learned, the faster you treat the better chance you have of recovering of CFS. If you go the regular Dr route, it has taken me 5 years to be diagnosed and ended in bed. I have cfs specialist now and have gotten so much better. They check the immune system and make sure is stable for you to fight the reactivation infections, so you have a better chance to stabilize.
    Nielk, taniaaust1 and merylg like this.
  16. Tammy

    Tammy Senior Member

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    In the meantime while you are trying to get this all figured out..............please don't push yourself..............try to simplify your life and balance your energy levels as best as you can. Sending big Hug.............Tammy
    Nielk, merylg and Wayne like this.
  17. Marlène

    Marlène Senior Member

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    Hello

    Here you find an overview of cortisol levels: 7 stages of adrenal exhaustion
    [​IMG]
    http://www.chronicfatigue.org/ASI Normal.html

    This is absurd, it should be between 15-30. A level below 5 is the latest stage of adrenal failure, stage 6-7.

    http://adrenalsweb.org/iron-and-ferritin.php
    Your iron and ferritin levels are very important factor in your
    health. If these levels are low you will not be able to tolerate
    thyroid treatment. (another important factor to have checked)

    http://www.holtorfmed.com/
    http://www.holtorfmed.com/dr-pdf/Diagnosis Treatment CFS FM.pdf

    Your adrenals are the gatekeeper against viruses, ... Low cortisol cannot defend you against chronic re-activation of viruses, parasites and bacteria. You need to get those adrenals fixed and rule number one is rest rest rest. They are your batteries. It takes months, sometimes years to have them back in shape.

    Please go to another endo to save your adrenals and health.
    merylg likes this.
  18. Patrick*

    Patrick* Formerly PWCalvin

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    Welcome to the site! I don't have anything to add that wasn't already said so well by others above. But I have one question? Is your screen name Ratdog a nod to the band of the same name led by Bob Weir? If so, I like it!
  19. rlc

    rlc Senior Member

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    Hi ratdog, I would like to back up what Ema is saying you need to find a better endo as soon as possible you have failed a very important test, the ACTH tests which potentially means your life is in danger, your cortisol results did not double with the ACTH stimulation tests which they should do if your cortisol production was normal see http://en.wikipedia.org/wiki/ACTH_stimulation_test and your morning cortisol result also shows adrenal insufficiency see http://www.nlm.nih.gov/medlineplus/ency/article/003693.htm

    There are several reasons why you may not have noticed a improvement when taking hydrocortisone, one is the dose may not have been enough, two you may need to take Florinef as well, because some people with adrenal insufficiency do not produce enough aldosterone and need Florinef to replace it.

    The third reason is that primary adrenal insufficiency (Addison’s disease) can be caused by many different illnesses, all Addison’s diseases means is destruction of the adrenal glands, and just treating the lack of cortisol will note get rid of all the other symptoms that these other diseases can cause.

    On this page it shows all the different diseases that can cause Primary adrenal insufficiency (Addison’s disease) http://www.harrisonspractice.com/practice/ub/view/Harrisons%20Practice/141327/all/Primary+Adrenal+Insufficiency

    And you will soon see by reading it how much you endo has failed to test you for. The most common cause of Addison’s is auto immune this can be tested for by testing for adrenal antibodies. Another common cause is Hemochromatosis (genetic iron overload), have you had full iron studies test done?? If not get your doc to do them. This illness is very common and frequently starts happening in men of your age. The excess iron not only destroys the adrenal glands but poisons many other organs and just treating the lack of cortisol will do nothing to resolve the other problems. Hemochromatosis also causes osteoarthritis and low testosterone. TB also causes Addison’s as do many fungal infections and metastatic cancers.

    Have you noticed any increase in skin pigmentation, such as not losing you tan, increased pigmentation where cloths rub against your skin, darkening of nails or inside your mouth? If you don’t have these symptoms you may have secondary or tertiary adrenal insufficiency this is caused by problems with the pituitary or hypothalamus, These problems are often caused by benign tumors, these can mess with other hormones and just treating the lack of cortisol is not enough to solve the problem.

    So my advice is to find a better endo, a lot of them have very little experience with these kinds of problems and spend most of their time dealing with the diabetes epidemic. The ACTH test that you have failed is a very major test to fail and indicates a potentially very serious problem. Yes there are studies that show subtly lower cortisol in CFS patients, but there is absolutely nothing subtle about your failed test results. Personally I think attributing your problems to CFS when there is so much that needs to be tested for that hasn’t been done yet, has the potential to be a very serious mistake.

    Please find a better endo who will do all the tests to find the cause of your failed ACTH tests before deciding that your problems are caused by CFS.

    Hope this helps

    All the best
    Ema likes this.
  20. ViaSwiss

    ViaSwiss

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    My story is similar.

    Take hydrocortisone again. 7.5mg 4 time a day starting at 6am and every 4 hours

    Get cmv hhv1 hh6 mycoplasma and vzv tested

    Take antivirals depending on which infections u have

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