Update on visits to my CFS specialist.

Discussion in 'Fibromyalgia Main Forum' started by Trevor1, Jan 27, 2006.

  1. Trevor1

    Trevor1 New Member

    Hello All!,

    Its been a while since ive posted, life has been a little hectic lately. I've been doing alot of reading on the message boards lately, instead of posting so I figured id update you all on my progress, or lack there of.

    As some of you know, if you have seen my posts. I got sick in California on vacation with some buddies, 8 months ago :(. And have all the cfs symtpoms.

    Anyway, I went to every doc in the book and finally ended up at the Mayo Clinic which did nothing. So I headed to a CFS specialist, figuring thats were I belong since every blood test is negative.

    Ive been seeing the specialist for a little over a month now, he has me on a bunch of supplements, but so far no noticable changes.

    However he has come up with a new theory, as a youngin I was always getting strep throat, and still do quite a bit. And he believes that along with the EBV, I may have an untreated strep infection somewhere in my body. He thinks this because my ASO titers, which are strep antibodies where really high, 444 to be exact. And they had risen from 312 on a previous blood test. My other doctors thought nothing of this, but he believes it could be a big part of my symptoms.

    Soo, he has me on antibiotics in hopes to kill whatever strep may be hiding in my body. I have been on the antibiotics for over two weeks now. Sad to report nothing to noticeable. However, somedays I feel as though I have a little more energy but no where near normal. But antibiotics take time so we will see what happens. Ill be taking them for a whole month so time will tell.

    I am still having B12 injections, I think these provide some energy the day you get them, otherwise nothing to special about these. My EBV titers seem to be going down, however its not completely gone yet.

    He explained to me, that he believes the EBV and strep hit me at the same time, when I was on vacation and my body just coulnd't win the fight. Hence why I have been sick for so long.

    So just wanted to update you guys on how I was doing, and if your ASO titer is high get some antibiotics, maybe they can help you out. I go back to him in a few weeks, for another blood test. To check the EBV lvls, and the strep levels. Hopefully they will both be going down!

    I dropped out of Arizona State University, couldn't manage :(. My doctor agrees it was a good move to get better though. I have moved on to Online school, and so far its going ok. Hard to find the motivation to do school when you feel so crappy all the time.

    Well thats it, feel free to ask any questions. And hope you all are feeling better!

    Take care,
    Trevor
  2. Manina

    Manina New Member

    Hope you get to feeling better with the antibiotics! but make sure you take some good acidopholis with those.
  3. Pianowoman

    Pianowoman New Member

    It's always helpful to get reports from other specialists and find out how people are being treated. I know there has been success with antibiotics and antivirals so there is hope.

    Take Care
    Kathy.
  4. GwenGlo

    GwenGlo New Member

    Even though 8 months seems long when you have this disease, I think it is in the early stages and you are fortunate to have found a doctor who seems to be on the right track.
    I would be very optimistic about the treatment you are getting.
    My advice would be to be patient and learn to pace yourself so you get a minimum of relapses/flares.
    I hope you will improve quickly because you are young and need to get back to that university :).
    Keep in touch.
    Blessings........Gwen
  5. sues1

    sues1 New Member

    I always look for you. Thanks ever so much on telling with us your story and trials on your quest for wellness. We can learn from you also. You inspire me and others too I am sure.

    Keep us informed. You seem to be a remarkable young man, so you have much on your side. Keep the work online going, even though it is rough.

    Someone recently Posted:

    "Sometimes we see life through a veil of pain....
    and it is important to know......
    that you are not alone."

    Youth and early detection is on your side.......
    Prayers for your recovery.....Blessings to you and all.....
    [This Message was Edited on 01/27/2006]
  6. Trevor1

    Trevor1 New Member

    Hey all,

    First off, thanks for your responses and concern much appreciated. Wish I could have responded sooner, been busy with the online school and researching as usual. Almost out of antibiotics, but still not feeling much of a difference. Brain is still shot, fatigue is still there. But I suppose the blood tests will determine if any strep went away.

    The echocardiagram of my heart came back negative, its strep free so that was good to hear. So if it isn't in my heart no clue where it is! But oh well, I have another appt in a few weeks, to get some new blood work done and see whats happening. Ill post the results in here to keep you all updated. Hopefully the EBV and strep have gone down.

    I become more restless as days pass, so I hope I can get better soon. The online school is a little frustrating, but im coping and doing well so far.

    Sue and Gwen thanks for your comforting comments, I have researched that young age can be a big advantage in overcoming this. Just hope im young enough heh.

    I'm still on all my supplements, and Im going to give magnesium a try before bed. Seems alot of people on the board get some relief from fog with that. Hopefully it will lift some of mine.

    Well thats about it, still feelin crappy and still truckin. But ive got hope, I hope you all are feeling better and I appreciate your responses.

    Take care,
    Trevor
  7. kellyann

    kellyann New Member

    Is there a chance that you could have been bitten by a tick while on your vacation in California? Have you been tested for Lyme Disease? If not, you should get tested asap!
    Take Care!
    Kellyann
  8. leomonkey

    leomonkey Member

    That is an interesting idea especially since I had many boughts with it as a younger person... otherwise my health was really good until I got the CFS. Thanks for mentioning this... I will investigate this with my doctor as well.
  9. bpmwriter

    bpmwriter New Member


    to what do you attribute your lower EBV levels? you're taking antibiotics for the strep, but this technically wouldn't affect your EBV levels since it's a virus and not a bacterial infection. are you taking something else to help with the EBV??

    eddie
  10. Trevor1

    Trevor1 New Member

    First, Yes I have had a Lyme Screen and it came back negative, got that ruled out early, thanks for the comment though, always up for new tests!

    And Bpmwriter, your right since the EBV is viral the antibiotics are doing nothing, my lvls had dropped a bit even before I started on them so I know they have nothin to do with it.

    The only thing it could be is the supplements ive been taking, and trying not to exert myself to much. I take 3 pills a day, twice a day. Try to have a multivitamin shake everyday also. Attempt to get good sleep, but can't always pull that off. I believe the supplements are helping my immune system fight the EBV, it isn't close to being gone though thats for sure but I think my body may be staring to get rid of some of it.

    Im going for new blood tests soon, and ill post the results if the EBV has gone down anymore. And ill ask my doctor what he thinks is going on with it. To try and give you guys a better answer. Thanks for all your comments, ill get back to you to answer any questions and with updates.

    Take care,
    trevor
  11. Trevor1

    Trevor1 New Member

    bump, for those who asked questions.
  12. Rosiebud

    Rosiebud New Member

    I hope the antibiotics work for you. At least you have found a specialist who is trying to help you.

    I take a weekly B12 injection too and it does help me on the day, my mind is clearer, I can actually do the crosswork like I used to, and a tiny bit more energy. To me its worth taking although if I'm very ill it doesnt help at all.

    Please keep in touch and let us know how your treatment goes and good luck with your online course.

    love
    Rosie
  13. ellenelle

    ellenelle Member

    Trevor,

    The thinking among the most CFS doctors now is that is equally if not more effective administered subcutaneously as opposed to intramuscularly, and many are prescribing B12 injections for home use. That makes it possible to maintain a constant level, which could help your energy considering that you respond to the injections so noticeably. Also, if you're using any form of B12 other than methyl B12, you might want to switch to the latter, which is more efficiently utilized by the body. Do a google search on methyl B12 and CFS.

    Ellen

    [This Message was Edited on 02/05/2006]
  14. cherylsue

    cherylsue Member

    Last year I lived on this board as I was suffering from a bout of viral induced CFS. (You can check my previous posts for my history) Today I am working full time in a school around hundreds of sick kids and I have an active social life. I guess you could say I am remission. I've had CFS bouts twice in five years and both lasted 14 months.


    If you suspect you have a viral CFS I would suggest you take Sambucol elderberry extract (local health food stores) and ProBoost from Prohealth. Both of the above products have been in clinical trials for efficacy and they certainly helped me get better. Antibiotics from your doctor will take care of the strep.

    Be patient. Improvement is gradual. Get the rest you need.

    God bless,

    CherylSue
  15. Bambi

    Bambi New Member

    it knocked it out in a day! I was SO sick, hallucinations and the whole schmeer. Interested in what you find out.
  16. zoemurr

    zoemurr New Member

    I always look for you too.. as I know you have 24hr. fog like I do. :( Does your doc have any explanation for this? Please let me know if you ever find a way out of it.. My chiro has helped me get a handle on the pain, but she can't seem to find my brain.

    -Sherry
  17. Trevor1

    Trevor1 New Member

    Hi all,

    Thanks for the responses they are appreciated. In regards to the B12 injections, I do find that they help me on the day I get them. I feel a little more aware and have some more energy. But it doesn't last long, but im keeping up with them at home. My mom gives them to me, just bought a new vial yesterday =).

    Cherylsue, I do believe my CFS is viral induced. I got the EBV at the beginning and still have it. I think my EBV turned into the CFS. Because my onset was flu like symptoms, severe nausea, felt like I had a fever, and the brain fog hit me like a ton of bricks within one day. And then the fatigue came. I will look into the Sambucol and ProBoost and appreciate your information. I also try to get the rest I need, although im a major insomniac, I try to sleep in to make up for lost rest.

    Bambi, rosie and ellenelle thanks for your comments. I will always post my updates. Usually will be in here unless I start a new thread. Chances are I will keep this one going. My next doctors appointment is on Valentines day the 14th, im going to get more bloodwork done before I go see him. To check the EBV levels and strep lvls. I will update with the results and any comments my doctor makes. Looking forward to the visit.

    Zoemurr, good to hear from you again. Sorry to hear you still are experiencing the 24hour fog. I still am, and it makes me crazy!. God, id give anything to get rid of it and actually feel "here". Anyway, this is my Number ONE! question to ask my doctor on my appt on the 14th. Im going to really stress that my brain is mush, I feel detatched and I can't concentrate or remember anything to save my life. The brain like I always say, is my worst symptom by far and really debilitates what I do. I can't remember who mentioned it on here but someone said your bodies alive but your soul isn't. That is what It feels like. When I discuss the fog with my doctor I will post all his comments and what he plans to do about. Currently I take Omega 3, also known as fish oil. But it hasn't even put a dent in the fog. Worth a try though, if your not already on it.

    Thanks again all for your comments, I appreciate the responses and concern. I will get back to you all after the appt hopefullly with some positive news.

    Take care,
    Trevor
  18. andrea1459

    andrea1459 New Member

    i just got tested for that and my titer reads 456...what anitbiotics are u on for that?

    also go here-- it shows what abnormal results means..

    http://health.allrefer.com/health/aso-titer-results.html
  19. Cromwell

    Cromwell New Member

    This makes sense. I have EBV ana and hx of lots of strep throat. I will ask the rheumy about this.


    Take your probiotics.

    Anne
  20. Trevor1

    Trevor1 New Member

    I take Cephalexin also known as Keflex. My doc put me on it for a month, and im almost done. So far ive taken 86 250mg pills. I take them 3 times a day, and ive only got 4 left. I have noticed I feel physically a little better, nothing to drastic like ive been saying, but I do thing they helped. And I will know for sure once I get the blood work done to see if they have brought the titer down.

    Take care,
    Trevor