input on reactions to probiotics/liposimalase

Discussion in 'Fibromyalgia Main Forum' started by pammy52, Jun 12, 2006.

  1. pammy52

    pammy52 New Member

    On 5/3/06 I started a treatment program for fms and cfids thru a wellness center headed up by a Dr. listed on the Dr. locater on this website.
    Northampton Wellness Center..Dr.Barry Elson.(I am being tx. by Dr.Darren Lynch.) Treatment based on Dr.Tietelbaums protocol.

    On 6/6 started Lipo-simalase and then 6/10 Kyodophilus as prescribed.

    I have begun to feel progressively worse over the past week to the point of spending most of the past weekend in bed with overwhelming fatigue and moderate-severe pain.
    Dragged myself to work yesterday but was just barely functioning.
    Called in today..still super fatigued and legs and arms are at a 7 on the pain scale...even tho I slept fairly well last night.
    Nauseated and alternating from cold and clammy to hot and sweating.

    Have a call in to my doc, but would like to hear from anyone who has taken either supp. and had similar reactions.

    The weather has been rainy and cold as well as having a recent emotional upheaval in my life.

    After several pretty good days at the beginning of the tx. program, I have not seen anything close to that since.
    I am factoring in all the issues but feel the extreme fatigue and jump in pain level is mostly related to the 2 new supp..
    Input most welcome.

    Thanks, Pammy
  2. pammy52

    pammy52 New Member

    Thanks for your quick response.

    I have assumed herxing was the issue. Have read plenty about it on here but have not experienced it and wasn't really sure what to expect.
    Also did not think it would slam me so quickly.

    The enzyme is 1 cap.(640mg) with breakfast and lunch.
    Probiotic is 2 caps. (1.5bill.cells)taken as above.

    Already decided to forget about the lunch dose of the pro. today.

    Next step in the plan is Saccharomyces boulardii.
    Ideally should begin that tomorrow or Thurs.. 1 cap,3x daily with meals.
    Even the name is provoking a physical response at this point!! LOL

    How does anyone maintain any degree of life when going thru this process, if this is how it hits you??
    (Just a rhetorical?)

    Bowels are working...somewhat overworking! ;-(

    Thanks...Pammy
    [This Message was Edited on 06/13/2006]
  3. Marta608

    Marta608 Member

    Yes, it sound like a combination of herx, the weather and stress. As Stormy said, try reducing the probiotic for a bit, wait out the weather and do what you can to get rid of as much stress as possible. You're undertaking a big step. Be sure to give yourself a lot of rest and credit. Don't be afraid to manage doses for your own body.

    That's what scared me off Dr. Teitelbaum's regimin. So many things in such a short time with no apparent allowance for individual tolerance levels. But then, I'm a wimp.

    I'm cheering you on.

    Marta
  4. pammy52

    pammy52 New Member

    Thanks for you responses.

    After 30+ yrs. of dealing with these DDs and finally beginning a recovery program in earnest, it is wonderful to have this board as a back up system to all the books and websites and Drs.,accumulated over the years.

    I found this website and board about 3 yrs. ago and have been here off and on since.
    Now that I am in a position to do battle with these health issues I am relieved to have such a wonderful place to come for advice and support.

    Hugs, Pammy

  5. pammy52

    pammy52 New Member

    Doing a bit better today but not well enough to go to work.

    Taking today off from the probiotics and will start again tomorrow with just 1.
    Just can't afford to miss more work this week so I am praying that the flare in fatigue in pain is truly related to the probiotic and I can recoup enough to work tomorrow and Friday.

    Had taken a part time job 5 weeks ago and am giving that up pronto. Hate to just have to quit with no notice but my body says...now!!
    Not sure how I will continue to afford the supplements.
    A real catch 22.
    Want to proceed with tx. in hopes of gaining better health in order to maintain my full time job and more importantly, have some form of life outside of work.

    Arghhhhhhhhh.

    One minute at a time is my mantra for today!!

    Pammy

    [This Message was Edited on 06/14/2006]
  6. pammy52

    pammy52 New Member

    Just hoping for other thoughts/input.

    Thanks, Pammy
  7. joanng

    joanng New Member

    I posted another topic about feeling really crappy and Jeanne-in-Canada told me to slow down. I never even thought of that. Here I am take 6 probiotics a day, started with 6, not 1!!!! No wonder I feel like garbage. Jeanne suggested I cut things in half because of toxic shock and I did a search and found this....oh my, what an idiot I am!!! Ok, 1 Candidese and 2 probiotics for a week. How's that to "start" with? Thanks guys, next time I'll ask BEFORE I start just taking stuff.

    joann
  8. Prunella

    Prunella New Member

    I never feel good on probiotics, but I have taken them off and on now for at least 15 yrs.

    I react to mold and fermented things and I sometimes wonder if there is a connection there to probiotics or the way they are produced.

    I did a post a while back that I may have titled Don't Take s.boullari. I don't know if this is the same as the one you mentionded, but I just thought I would alert you to that. I don't remember the details, but I do know I came across some negative research about it.
  9. pammy52

    pammy52 New Member

    Thanks ladies for your input.

    I do think the probiotics are necessary for me given my history with antibiotic use as well as dietary choices in the past.

    Obviously taking the appropriate amount is critical in being able to function while letting them do their job.

    Georgia....I understand your frustration with the protocols that are out there and agree it seems as though if each one was the 'answer' then we would all be on the road to recovery.

    Well...the majority of docs in our health system do not promote these types of treatments.
    Too time consuming for the time they are alloted with pts. and they are not going to make much money if they don't roll em in and roll em out of the office.
    Also the pharmaceutical co. and ins. co. do not reward them for prescribing supplements etc..

    Just because something is not what the mainstream of the health industry promotes, it doesn't mean it won't work.
    Also..what works for one might not work for another as those of us who have researched, and tried for years, know.

    The only way you will know if it is going to work is to give it a good run.
    I would rather use supplements and probiotics as the heavy hitters for this DD then a fistful of prescription drugs.
    I have been to many docs over the years and some were way to willing to just write another prescription for pain meds or antidepressants etc after barely listening to what I had to say.

    Those meds have their place and I use them also but they only make the symptoms more tolerable at times and in no way will they help correct what is out of whack in my system.

    These diploma mill docs may not have all the answers but it is up to us to do our homework and with enough reading and input from those who have been there, I think they have better answers than many of the traditional MDs and have the platform to allow those who want to try alternative routes, the opportunity to learn different ways to improve their health.


    Pammy
    [This Message was Edited on 08/02/2006]