Discussion in 'Fibromyalgia Main Forum' started by cindy41, Jul 15, 2006.

  1. cindy41

    cindy41 New Member

    Did you ever make it to see Dr Berndtson? I was just wondering how it went.

  2. cherylsue

    cherylsue Member

    Are you from Chicagoland, too? I heard of Dr. Berndtson. Next week I have an appointment with a Dr. Lu from Loyola who practices integrative medicine. I would be interested in your doctor's opinion.

  3. deliarose

    deliarose New Member

    apols for not getting back..I saw him. I like him. He's thorough and conservative.

    He put me on Valtrex (and Vascuzyme). I've been raving about it since..fog has been lifting.

    My other doc is supposed to be getting me Xyrem.

    Berndtson suggested it would help, but he can't Rx it.

    How are you doing?

    CherylSue.. let us know how the loyola doc works out.

  4. place

    place New Member

    I think we are on the same treatment path!

    I will be trying Xyrem within the next couple of weeks.

    And this week, I am seeing Dr. J from the FFC (left to start her own practice). So I am sure I will be getting some sort of treatment for infections.

    I just hope that the two efforts will work in synergy together to make a big difference.

    Unlike many on this board, I have just started down the fibro path and have not progressed as far.

    I am hoping to see result more quickly than most patients, but knowing the way things tend to work out, It will be the opposit. Murphys law just loves me! <br>[<i>This Message was Edited on 07/15/2006</i>]
  5. cindy41

    cindy41 New Member

    Right now I am not doing to good. But I really felt like Dr Berndtson was on the right track. But with hubby being out of work, I can not afford it now. But as soon as he is back to working I plan on going back to the doc. Now I am on cymbalta, xanax, Transfer Factor, and nystatin and an over the counter supplement for the yeast. Keep me posted and let me know how it is going for you.

  6. cindy41

    cindy41 New Member

    Have you checked out Dr Berndtson yet. He is the most knowledgeable doc on CFS and Fibro that I have found in 12 years. He is a very gentle and caring person. He has offices in Elmhurst, Glenview and Chicago. He might be worth looking in to for you too.

  7. deliarose

    deliarose New Member

    did Berndtson put you on Transfer Factor and Nystatin?

    What TF are u taking and are you reaping much benefit?

  8. cindy41

    cindy41 New Member

    Dr Berndtson put me on the Natto, baby asprin and cerefolin for the Lipoprotein A and what he referred to as sticky blood. He put me on the Nystatin for the yeast which he did a blood test for and mine was very high. The Natto was very expensive so I stopped that. But since he gave me a large amount of the nystatin I decided to start that again recently.

    He also suggested Liver support which I took for awhile.

    The TF System 100 I decided to take after reading about it here. I have very high level of EBV and CMV, and while I know everyone has those antibodies, working in a lab I also know that most people do not have them in the thousands like I do.

    I am taking an over the counter supplement called Yeastfend that I got from the Vitamin Shoppe and I am waiting for a delivery of the Fatigued to Fantastic that I ordered from here.

    My GP put me on an antidepressant. So far with all of the above I have not noticed any improvement yet, but I have only been taking this for about a month.

    Although when I started the Yeastfend my IBS did straighten out almost immediatly.

    With the hubby being out of work it is hard to afford some of this so I have to pick and choose what I take. I am really considering asking my GP for an antiviral. Not sure how he would take that suggestion since his specialty is Fibro, he is not too up to date on CFS.

    <br>[<i>This Message was Edited on 07/17/2006</i>]
    <br>[<i>This Message was Edited on 07/17/2006</i>]
    <br>[<i>This Message was Edited on 07/17/2006</i>]
  9. deliarose

    deliarose New Member

    thanks for responding.

    I found the anti-virals worked within a perhaps a couple of weeks' road test would be sufficient to tell you whether they were right for you?

    Just a thought.

    Also, what liver support are you taking? Milk thistle, Liv52?

  10. Neshema1

    Neshema1 New Member

    What an amazingly kind, brilliant guy, who is a doc who actually likes complicated sick ppl. Hard to get into. Didnt know he has glenview office. Anyone have his contact info there. I need to see him ASAP. Saw him a few times but then was out of state. He is really thorough. He is a very cool guy. Does he test for XMRV or Mito? Does he prescribe klonopin? If you know any answers to these questions, pls let me know. I couldnt get an appt as soon as i need in park ridge. THANKS!