Cherylsue

Discussion in 'Fibromyalgia Main Forum' started by cindy41, Oct 29, 2006.

  1. cindy41

    cindy41 New Member

    HI CHERYL

    I SEE YOUR GOING THRU A BAD TIME NOW, BUT I WANTED TO ASK A COUPLE OF QUESTIONS.

    MY DOC IS AN FRIEND AND COLLEGUE OF DR PAPERNIC AND WANTS ME TO HAVE A SLEEP STUDY DONE. DID YOU HAVE ONE? AND WHAT DID THEY FIND. WAS ANYTHING FOUND THERE PART OF YOUR RECOVERY?

    ALSO ARE YOU TAKING ANY MEDS THAT YOU THOUGHT HELPED. RIGHT NOW I AM ON CYMBALTA AND KLONOPIN. MY DOC SAID THAT I AM FUNCTIONING SINCE I MAKE IT TO WORK EVERYDAY. I FORGOT TO TELL HIM THAT I HAVE 35 DAYS OF VACATION AND USE EVERY ONE OF THEM AS A SICK DAY. HOW MANY PEOPLE WOULD BE CONSIDERED FUNCTIONING IF THEY TOOK OFF 35 DAYS A YEAR?

    ANY WAY HOPE YOU GET BACK ON THE ROAD TO RECOVERY SOON

    CINDY IN ILLINOIS
    [This Message was Edited on 10/30/2006]
  2. cindy41

    cindy41 New Member

    DID YOU HAVE TO HAVE A PRE-EVALUATION BY ANOTHER DOC BEFORE THE SLEEP STUDY? WHERE DID YOU HAVE YOURS DONE? I AM HAVING MINE AT LUTHERAN GENERAL, AND THE PRE-EVALUATION PAPERS I GOT SEEM MORE LIKE A PSYCH ELVALUATION THAT A SLEEP STUDY.

    THANKS
    CINDY
  3. cindy41

    cindy41 New Member

  4. deliarose

    deliarose New Member

    maybe I can jump in here..since cherylsue doesn't seem to b around.

    I used to be a patieent of Dr. Papernik's and have had 2 sleep studies.

    The first one was at Northwestern and I did not need a pre-assesment.. The second was at Rush and I did need a pre-assesment.

    The first suggested alpha intrusion. The second found a lot of probs with restless legs...and no stage 3 or 4 sleep.

    Pappernik (who authorised the second study) didn't change my meds after the study. He had me on trazadone...(I did the study on the sleep meds).

    When I went to Dr. Berndtson.. he took one look at the sleep study results and suggested I try Xyrem.

    I did for 11 days. It was an unpleasant experience.. I got great sleep... but horrible rebound anxiety.

    Dunno if that helps much.

    In fact, I am trying a new doc, and thinking of asking for klonopin.

    cheers
    delia
  5. cindy41

    cindy41 New Member

    I am taking Klonopin now, I have been begging my doc to do something, and he just doesn't know what to do with me.

    I took Klonopin before for a couple of years and just found myself forgetting to take them after a while. I am not sure that it helped anyway but I did start back on it a couple of weeks ago.

    I go for a bone scan tomorrow due to some bone pains I have been having, and the sleep study in a couple of weeks. I have to see the sleep specialist first and from the form I had to fill out I get the impression that this woman doc thinks everything is emotional, and I hate dealing with that attitude.

    I wish I could have continued to see Dr Berndtson, I was starting to feel better but I could he was out of network and the supplements were expensive.

    It sucks to be too financaly broke to afford what may help to feel better.

    I am also pushing my doc to try Valtrex since I know I have a high viral load to a number of different viruses.

    Are you still taking the antiviral?

    Thanks again for replying
    Cindy
  6. cherylsue

    cherylsue Member

    Sorry, I don't come to the boards as often as I used to, but will check in once in awhile. Just title your post to me CherylSue.

    I had two sleep studies done at Edward Hospital's Sleep Clinic. Very nice place. Dr. Papernik just wrote up an order. They didn't find anything significant. I still wake up several times a night. Sometimes I fall back to sleep, sometimes I don't.

    I've tried Ambien - increases malaise
    Lunesta - loved the sleep effect, but bad stomach pain and aftertaste
    Tradezone - bad dreams
    Dr. Teitelbaum's herbal formula - doesn't work
    Valerian - doesn't work
    Cymbalta - makes me nervous
    Rozerem - worked at first, but lost effect after a month. It can raise prolactin levels and increase depression.

    ZMA from Prohealth - made me feel worse.

    So as you can see, I'm very frustrated. Dr. Papernik never suggested Klonopin, and since I am so sensitive to meds I don't think I want to try it anyway.

    Increased thirst and urination wake me up at night, as well as increased warmth even though the room is cool. I'm not diabetic, but I am menopausal. I think this may be a contributing factor, but I don't want to mess with my hormones with HRT. I don't have hot flashes, just several awakenings a night.

    Lisapetrison on this message board recommended Pure Encapsulations brand St. John's Wort. I ordered this online. It is a high quality St. John's Wort. This formula has increased my serotonin levels and has taken the edge off my increasing depression with coping with CFS.

    I have a little more energy now, and maybe have moved to 35% on the CFS scale. My symptoms have gone from severe to moderate. I am even able to enjoy an occasional dinner with my husband at a local restaurant. I still have a ways to go yet before I return to work Nov. 20th perhaps.

    What is Dr. Keith B.'s protocol? You said he was helping you. I'd be interested in knowing how he treats CFS.

    Hope this helps.

    CherylSue

  7. cherylsue

    cherylsue Member

  8. cherylsue

    cherylsue Member

  9. cindy41

    cindy41 New Member

    I really liked Dr Berndtson, but unfortunatly was unable to continue to see him when my hubby lost his job. May go back to him in the future.

    Anyway he did some test found my Lipoprotein A was high, and wrote a script for that. Also tested for candida (which I have had chronically for years) and prescribe Nystatin for that. Was also taking Nattokinase and a few other supplements I can not remember now.

    What I liked about him was that he treated this like a real disorder and was into research. He would also give me a list of things to look up on the internet to discuss trying at my next visit. He was very open minded, gentle, and caring. I liked the girl at the front desk too, she was a trip, like a punk rocker, but really, really nice. I did not care for the chiro or the other doc in the Elmhurst practice with him.

    But once I was deemed worthy (lol) by his staff to see him, he was the only one I saw. My insurance did cover some of it, but with the co-pay and supplements I just could not afford it any longer. But as far as docs goes he was very resonable in price, since I always spent a half hour to an hour with him.

    Let me know if you decide to see him and what you think.

    Cindy
  10. cherylsue

    cherylsue Member

    You said he had an office in Elmhurst?? I thought he was in Chicago. Where is his office in Elmhurst?

    Thanks for the info.

    CherylSue
  11. cindy41

    cindy41 New Member

    Near Elmhurst clinic. Straight down Elmhurst road, right in the heart of downtown Elmhurst. He also has an office in Glenview.
  12. deliarose

    deliarose New Member

    berndtson basically follows the teitelbaum protocol... sleep, hormones, immune system.. blah, blah

    but he's a bit more conservative than Teitelbaum in terms of how much and how quickly he throws stuff at u...

    Cindy.. what supps did he recommend to u?

    delia
  13. deliarose

    deliarose New Member

    yr Valtrex question..

    I started on teh Valtrex and the brain fog began to lift.. .but Dr B also recommended I try Xyrem (which I got from another doc) and I had such a bad experience with that that I totally lost faith in Dr. B.

    I don't know if that's fair.. I see other leading CFS docs like Enlander in NY are also recommending or Rxing Xyrem.

    But anyway, I gave up both drugs and never went back to him.

    Around the same time, I got a chance to see Dr Joe Brewer in Kansas City, MO, and he put me on transfer factor and glutathione.... adn I've never looked back.

    Doing tons better.

    Brewer has a 6 month waiting list.. but he does take insurance...

    delia
  14. cindy41

    cindy41 New Member

    Dr Berndtson had me on Nattokinase, Nystatin, baby asprin, Wobenzyme, and another script that I can not remember right now, but was for the elevated Lipoprotein A. He mentioned they Xyrem, but we never got that far. Although I did research it and see other docs are trying it.
    I just really liked the fact that he would listen and really seem to put some thought into treatments.

    What transfer factor are you taking, and is the glutathione a supplement or prescription?

    Cindy
  15. cherylsue

    cherylsue Member

    Thanks for your replies. It gives me somethong to think about. Did Dr. B. do any labs like an ISAC panel, etc.?

    CherylSue
  16. deliarose

    deliarose New Member

    TF: Immunity Today's Immune CAre 64 (check out past posts from wangotango.. he says he is 60 percent better after some time on this tx)

    Glutathione is not prescription. I get IV, use oral liposomal and precursors such as undenatured whey, NAC, ALA.

    I'm waiting to see if insurance will cover the IVs.

    delia
  17. deliarose

    deliarose New Member

    I had an ISAC panel done before I saw Berndtson. I asked Papernik if he would order it and he did.

    IT used to be that u had to use a specialised lab to get hypercoag tests done (Hemex and such) but now Quest does them... so u can get insurance to pay.

    Yea!

    Mine came back clear. I don't have a hypercoagulation problem.....but some people in the CFS field think this problem is v. common in people with CFS.

    delia
  18. cherylsue

    cherylsue Member

    Thanks for all the good info. I will ask my regular PCP when I see her in two weeks for the ISAC panel run through Quest.

    Hugs,
    CherylSue
  19. deliarose

    deliarose New Member

    u might want to do a search.. for an article that appeared in teh UK press on this subject recently.

    It said that Hughes syndrome.. hypercoagulated blood .. was vastly undiagnosed.. even tho it's easily treatable.

    The article, (in the Times of London) said that some people with this problem had been told they had MS.. when in fact they had a condition that could be treated with aspirin.

    A real eye-opener.

    U might want to print it off for yr doc.

    delia
  20. cindy41

    cindy41 New Member

    Dr B did do the hypercoag panel for me, that was why he prescibed the baby asprin and a script that I can not remember. He also mentioned that on some of his patients he has done the heparin also. He order the candida and a few other test also.

    Luckily I work for Quest so all my labs were free, but it really is hard to get docs to order the proper test, even though I work there.

    cindy