Getting more discouraged...

Discussion in 'Fibromyalgia Main Forum' started by CAEBVguy, May 28, 2006.

  1. CAEBVguy

    CAEBVguy New Member

    Hi,

    My name is Dave and I have CAEBV (Chronic Active Epstein-Barr Virus). In May of 2004 I could no longer work and had a nervous breakdown. I knew I was sick, but didn't know what at the time. I packed up and moved back home (I'm 36 and was living in Wisconsin.) where I could sort things out. I pretty much lost everything because I couldn't work regular shifts anymore. I was too fatigued and severely depressed. In October of 2004 I was diagnosed with CAEBV from a new doctor, who is an internal medicine doctor and good. I filed for disability not really knowing what to do, just knowing I was sick and couldn't work. I've been denied twice already (that's natural) and waiting for administrative law judge. The waiting is excruciating. I go to my doctor at least once a month, or more if I have an infection or something else that comes along with a compromised immune system. I go to mental therapy twice a month. That is helping. I am not as depressed as I was now that I have the right combination of anti-depressants and therapy, however my medical doctor has informed me that there is no course of therapy for CAEBV and there is no cure at this time. I am also virually active 24/7. Recently on my last visit to my doctor, he said he was sure I could "get past" the CAEBV and fatigue if Ijust lost weight. Yes, I have gained weight since 2004. I have been too fatigued to do the amount of exercise I used to do. This would be natural. But I don't understand the sudden change in response from my doctor. It is strange to me. I was not heavy before and I was diagnosed with CAEBV, why would losing weight suddenly "cure" me? Yes, I no doubt would feel better not carrying around as much weight, but I seriously doubt if it would change some of the other regular symptoms I have of CAEBV. I'm so discouraged, I don't feel well, no one believes me it seems, and I just feel hopeless. If anyone can identify or give advice I would surely appreciate it. I feel incredibly lonely and resourceless at the end of the world here in Kansas.

    Dave
    CAEBVGUY
  2. 1sweetie

    1sweetie New Member

    I understand how discouraged one can get. I assume that it is normal when your whole world is turned upside down and there doesn't seem to be "a fix" let alone a quick fix that we would like. Although it may be normal, I know the feeling of hopelessness all to well. I still try though and I bet you do too. It isn't easy. It's the hardiest thing I have ever faced and I have had bouts and multiple surgeries because of cancer. This is so different and like you said very few people understand.

    I have CFS/FM along with the other associated diseases that come with the package of symptoms. I, too, have gained weight. I was always small and never worried about what I ate. I gained 20 lbs in 11 months and I have no idea why. I eat so little now because I either forget to eat, am not able to fix the food, or I can't eat because of GERD & IBS. I don't understand but it is not your weight that is making you sick.

    I haven't given you any great advise to help you but do know that you are not alone. I come to the board when I can and it helps me to know that there are others that feel like I do. I also have gotten good info from others who have found a way to get a handle of this situation better than I.

    I hope you are able to get the disability that you deserve soon.
  3. Pianowoman

    Pianowoman New Member

    Dave,
    I'm sorry that you are going through this. You have found a place,though, where people can understand what you are going through.
    I agree that weight has nothing to do with it. Your Doctor may just be grasping at straws because he has no answer. There is no cure that we know of but I hope you can do some reading here. You might find some help from things that have helped others.
    This really is a great place to get support and information. Good to have you with us.

    Kathy.
  4. painandagony

    painandagony New Member

    welcome to the boards.
    these illnesses suck. people not understanding it goes on and on.....it's gotten better and better for me over the years but there's always someone new you meet or someone you thought understood and then they say something that just blows you away.
    i don't have any advice, but just know you are not alone. everyone on here is great. it is a good place to come when you're feeling down or want to look up some information/resources.
    take care
  5. Juloo

    Juloo Member

    I'm sorry you are struggling with the EBV, but I am glad that you are here. At least you have good company.

    I've been dealing with CFS for 8 years, but currently have both Lyme and (chronic) active EBV, as does my husband.

    Don't know what to tell you about your doctor -- amazing, though, that he's 'discovered' the cure for EBV!

    As for you, I can appreciate your loneliness. I hope that you try some of the things others mentioned -- both Valtrex and Famvir didn't seem to lower the antibody counts down for me, but I persist. I think that *next* (and in conjunction with the above), I'm going to try qigong. It seems like a mild-enough exercise, so it shouldn't hurt, and it just might even help (there's Mikie's patented? chicken soup rule-of-thumb for evaluating remedies).

    Do you have a decent public library nearby? If so, perhaps you can order a DVD by interlibrary loan. That, at least, shouldn't cost (or if it doesn, just a little bit).

    Keep your chin up -- there are a lot of us out here. Don't give up.
    [This Message was Edited on 05/28/2006]
  6. ANNXYZ

    ANNXYZ New Member

    I got over chronic EBV by using Dr Martin Lerner's protocol . He is an infectious disease doc who had EBV and was also sick. He treeats CFIDS folks like us . My doc used his protocol of high doses of valtrex ( some have even used the old acyclovir if that is all that is available to you ) for two years . It took three months to see improvement , but after the fourth month I never had to stay bed bound. I have recently found I have lyme, but the EBV is not a problem.

    Some suggestions for you to research :
    turmeric ( from Ken Lassesen's site cheap help ) which is antiviral

    olive leaf extract - also antiviral

    colostrum - an immune booster

    aggressive approach to maximum nutrition - be sure you have a balance of vitamins, minerals, fish oil or essential fatty acids , and some amino acids . I honestly do not think I would have gotten over it w/o making antioxidants and nutrition a real priority .
    We have to give our cells what they need to function!


    I order turmeric thru Puritan, and olive leaf is not hard to find . Vitamin Shoppe is another good source .
    Colostrum is sold here and other places , just be careful to take it according to instructions .

    I think I had EBV bec my immune system was depressed due to lyme . I paid 250$ for an Igenex test , and I personally encourage everyone here to be sure to get Igenex , bec w/o treating lyme, you will still have a sick immune system . Many of us here are finding after ten years , we actually have lyme . Most likely you do not , but it something to consider . Most other lyme tests are NOT relaible.

    THERE ARE things you can do to get better w/ EBV! It is slow , but it is VERY possible !

    May I add that with most of these things you feel worse before getting better . Even with valtrex. We feel worse for a while bec we are killing of pathogens quickly , and bec our immune systems wake up and fire off interferon.

    I think you would be surprised how much better you can get w/ EBV in four months if you are aggressively proactive .

    You can find Dr Martin Lerner's info online . He is an infectious disease doc in Detroit MI who had to give up medicine for a while til he recovered from EBV .

    You can help yourself !
    [This Message was Edited on 05/28/2006]
  7. Lolalee

    Lolalee New Member

    I'm sorry that you are so discouraged right now.

    I find that many doctors jump on the "weight cure" when they don't know what to do. My sister has Lupus and her doctor kept telling her that her symptoms would go away if she lost weight. Well, of course excess weight is not healthy for anyone, but losing weight is not going to cure CAEBV or FMS or CFIDS.

    If you haven't already told him, you shouldn't hesitate to tell him what you have said here, i.e. "I was not heavy before and I was diagnosed with CAEBV, why would losing weight suddenly "cure" me?." Don't let him use that against you. It is like saying that it's your fault that you are sick. That is wrong.

    I wish you the best.

    Lolalee
  8. ANNXYZ

    ANNXYZ New Member

  9. Marta608

    Marta608 Member

    I don't think its surprising we get discouraged and depressed; I think it's amazing that we do as well as we do!

    I have EBV that peaks every now and then. I can't imagine having it all the time. When it happens I sleep as much as I can and take a lot of vitamin C and zinc. The sleep seems to be key for me.

    There are a lot of good suggestions here and I agree that we need to keep trying. I also agree that many meds can cause weight gain too. As for your doctor, maybe he feels helpless to help you and his "solution" is the weight gain. I'd find me another one.

    Hugs,
    Marta
  10. findmind

    findmind New Member

    I'm sorry to say, some doctors are getting info from somewhere (CDC?) to get their patients CBT and exercise.

    That is what has been pushed in the UK, to the detriment of many patients, I'm sorry to hear.

    However, now that both UK and CDC researchers have discovered genetic findings that help explain our illness(es), maybe new word will get out to them, that exercise makes us worse.

    CBT can help all of us who have a chronic illness. It helps us find ways to cope and deal better.

    You might try the transfer factors available thru this site: post to Mikie, or do a search about them.

    Rest is vital. EBV has an affinity for the heart, I've heard: Dr. Martin Lerner's patients had heart problems. Do a google search on him.

    Forget about your weight, except do try to eat plenty of veggies, lean protein and whole grains (unless allergic). Don't favor carbs, that make one feel good for awhile, then the sugar drop is terrible.

    Do have hope: the most exciting research is coming out now and I feel sure there will be treatments soon.

    Also, do check out the fibroandfatigue dot com site and see if a clinic near you...when you get approved for SSDI, you'll get back benefits and Medicare, and Part D for meds.

    You could choose to use the FFC clinic nearest you for treatment with the back benefits; or, go see Dr. Lerner at Wayne Univ. Hospital, in Detroit. He's also trained others there in his treatment protocol, and it would be cheaper than FFC clinics.

    Please let us know how you are doing, we do care and want to help if we can.

    findmind
  11. UnicornK

    UnicornK New Member

    I know this will sound strange, but your cry for help (understanding) came at the perfect time for me. I was dx a little over a year ago (no EBV...at least not yet) but with CFS/FM etc... And I've had them for at least 20+ years.

    Earlier this week I was so depressed (in addition to everything else I am bipolar and have PTSD) that I wasn't sure I could go on. I posted here about being in such a flare, both physically and mentally, and I got so many wonderful replies.

    Then reading your post. I realized - again - that I AM NOT ALONE!!! And neither are you.

    Whenever you feel down, come here and someone will be here for you. Whenever you are feeling up, come here, 'cause someone will need you.

    My friends and family try to understand, but unless you actually experience these DDs, you can't fully understand us.

    God Bless.
  12. ANNXYZ

    ANNXYZ New Member

    there is a drug that is showing promise for some CFIDS patients , called Valcyte. Personally I am excited, as
    some studies APPEAR ( time will tell) to be able to reset the faulty functioning of the immune sysytem . Some folks ahve been helped a lot by it . I heard that some have posted VERY good things on Yahoo boards . Valcyte is an antiviral drug .

    Who knows , within a year or so, we may have some substantial help from a drug . Yes it will be costly , but eventually it will be available in other countries cheaper .

    An added note , my daughter is living in Rome , Italy .
    Do you know how much a month's supply for prozac is ?
    $ 11 . Can you believe it ?
  13. CAEBVguy

    CAEBVguy New Member

    Thank you so much to all who have repsonded so far. It was so needed. I want to respond to each personally, but I don't think I have the energy! lol. My mom reminded what my doctor said specifically, and to be fair I should restate. He said that by losing the weight "he guaranteed I would feel 100% better", not that I would be cured. She reminded me that there is difference. But I do think it is strange for him to come up with this theory so suddenly. I wonder if he's heard of these new therapies from the UK that someone mentioned here. I've tried to tell him, in more ways than one, that if I exercise I usually end up with extreme post exertional malaise. He says he understands that, and sympathizes, but the exercise is crucial.

    I think more importantly my diet should be re-examined. More fresh vegetables and fruit. I'm already a whole wheat and grain fan fortunately. And yes, as several of you mentioned the weight gain was more likely from my anti-depressant combination. Celexa, Cymbalta, Seroquel, and Myrapex (I have restless leg terribly).

    I also have been diagnosed with PTSD, as one of you also mentioned. This plays into a lot too as you can imagine. What I think is most frustrating is other people and some family members even saying "You look fine. You just need to get out and get a job.". sigh. You just want to give up and shut down. But I just can't do that. I don't want to. I also can't sit and pine for disability, brooding about when it will happen. That would drive me crazy. I guess I was fine until I received an e-mail from an Uncle last week saying I needed to get a job and quit "living off my Mom". This was so painful. I would love to have my "old life" back, working at my old job everyday, my apartment, my car, my friends in Madison, WI. Rather than here and for the most part dependent. Although, to my credit, I did seek and get state assistance which will come until disability is approved. So I do provide for myself as much as I can. This was so hurtful though.

    I have heard that high doses of Valtrex for several months (8 to 12) has worked for people with CAEBV. How much is Valtrex? I'm worried my assistance healthcare would not pay for it. The good thing about my doctor is that he is willing to try anything. Anything I want if it seems to have some merit. We've tried several things. Vitamin/supplement therapy (for 8 months with no improvement), Ritalin (for energy. didn't work.), Zovirax (didn't help.), etc. Maybe some of you are right, he's pulling out the weight card because he's not sure what else to try. It is certainly true that I would probably feel a bit better carrying around less weight. It's the getting there I'm not sure how to do.

    Thanks for so much good info. I will check out Martin Lerner's info. I've read the book "America Exhausted" by Dr. Edward J. Conley, but most of the stuff just didn't work for me. I also read "From Fatigued to Fantastic", but didn't find much in there for me. I did try, several months ago, The Yeast Syndrome Diet. I have to say in all honesty, although I didn't lose weight, and the diet is rather restrictive, I felt a bit better (stomach-wise especially) on it. My medical doctor de-bunked it and said it was crap, that there was no medical basis to it. But my therapist said something interesting to that. If it works for me, who cares! So I may go back on that.

    I really need above all to have a community of people who understand me. Thank you so, so much for answering my call. This was much needed for me, and I would like to return and talk to all of you more often. Thank you for understanding and your compassion. I really appreciate it.

    Dave
  14. ANNXYZ

    ANNXYZ New Member

    I took ( if I remember correctly ) 1000 mg ( big blue pills ) twice daily . I saw improvement begin after the fourth month . I stayed on it two years .

    Acyclovir is cheaper and has also helped some people .
    There are MANY drug companies that WILL provide meds FREE for those sick and unable to pay . Others here have received help thru a program . You could call or write the drug co , and ask for help . Your doc could write a letter for you to give them. There are ways to get help!

    Also , turmeric and olive leaf are cheap and are antivirals . High doses of C kills pathogens AND cancer cells according to my physician. I had a friend who sipped on water with VIT C ( high doses ) for a few months , and got well from EBV . She is now hanging wall paper for a living !

    I encourage you to write Dr Lerner in Detroit and ask him for suggestions . He recovered from it .

    Your uncle is making assumptions w/o getting the facts and that is not fair . Maybe you should explain that you are under a doc's care and that your immune system is not working properly ( disordered) .

    A reminder , most of the things that fire up your immune system to work more efficiently , cause you to feel worse for a while ( interferon increases) . On top of that , the viruses and bacteria that get killed off make us feel lousy as they die and pass thru our system. It is a common experience for many of us to feel worse before improving . The same usually goes for the first month on the ANTIVIRAL drugs . Don't give up bec I KNOW people who got better w/ EBV !