Results 1 to 12 of 12
  1. #1
    ICN Member Katrina's Avatar
    Join Date
    Aug 2001
    Location
    Green Bay WI
    Posts
    9,904

    Question What are your best rules for considering an alternative treatment?

    We need to be careful when we try any new treatment...conventional or alternative. Since with alternative treatments we often have to find out about them on our own what are your rules to make sure that the treatment is right for you?
    Research?
    Ask your doctor?
    Judge the site you get info on in any special way?


    Thank you very much for your help!
    Faith, Hope, and Love,
    Katrina


    I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back! My hope story http://www.ic-network.com/patientstories/katrina.html
    http://mandksales.net
    IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    or find me on facebook http://www.facebook.com/kat671?ref=profile
    Be the Miracle! & Pay it Forward!

    carmelann@charter.net please contact me...I am here to help!http://health.groups.yahoo.com/group/ICinWI/ if your from WI please contact me!

  2. #2
    ICN Member poetgirl's Avatar
    Join Date
    Mar 2003
    Location
    Atlanta
    Posts
    1,424
    Hi Katrina,

    I do a lot of research on my own -- usually on the internet. I try to stick to sites that describe the alternative treatment in measured, medical language and are written by a licensed holistic practitioner (N.D. or D.O.) I tend to be suspicious of any site that claims that a treatment can treat every problem out there or sounds so extreme as to be unbelievable.

    I generally do not consult my medical practitioners (with the exception of my chiropractor) about alternative treatments because they tend to be dismissive of anything they haven't prescribed that isn't manufactured by a large pharmaceutical manufacturer.
    Namaste

    "You must be the change you want to see in the world." - Mahatma Gandhi

    "The most important medicine is tender love and care" - Mother Teresa

    Proud mother of Ahleia, born on April 9, 2007

    -----------------------
    Diagnosed with:
    IC, OAB, Congenital urethral stricture, IBS, Vulvar vestibulitis, Heart murmur, Congenital cervical stenosis...but otherwise doing great!

    Meds:
    Currently in remission, but took the following for 3 years: Elmiron 200 mg., Elavil 25 mg., Detrol LA 4mg, Ovcon-35

    Health treatments/practices:
    Kripalu yoga, Chiropractic, Massage therapy and Reiki

  3. #3
    ICN Member Katrina's Avatar
    Join Date
    Aug 2001
    Location
    Green Bay WI
    Posts
    9,904
    Do you have specific sites you check things out at often? Thanks for your help.
    Faith, Hope, and Love,
    Katrina


    I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back! My hope story http://www.ic-network.com/patientstories/katrina.html
    http://mandksales.net
    IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    or find me on facebook http://www.facebook.com/kat671?ref=profile
    Be the Miracle! & Pay it Forward!

    carmelann@charter.net please contact me...I am here to help!http://health.groups.yahoo.com/group/ICinWI/ if your from WI please contact me!

  4. #4
    ICN Member poetgirl's Avatar
    Join Date
    Mar 2003
    Location
    Atlanta
    Posts
    1,424
    One site that comes to mind right away is: http://www.wholehealthmd.com/
    Namaste

    "You must be the change you want to see in the world." - Mahatma Gandhi

    "The most important medicine is tender love and care" - Mother Teresa

    Proud mother of Ahleia, born on April 9, 2007

    -----------------------
    Diagnosed with:
    IC, OAB, Congenital urethral stricture, IBS, Vulvar vestibulitis, Heart murmur, Congenital cervical stenosis...but otherwise doing great!

    Meds:
    Currently in remission, but took the following for 3 years: Elmiron 200 mg., Elavil 25 mg., Detrol LA 4mg, Ovcon-35

    Health treatments/practices:
    Kripalu yoga, Chiropractic, Massage therapy and Reiki

  5. #5
    ICN Member windwalker's Avatar
    Join Date
    May 2004
    Location
    Michigan
    Posts
    1,554
    I will constantly research, get as much info and opinions as possible before deciding what to do.

  6. #6
    ICN Member massagedoula's Avatar
    Join Date
    Feb 2005
    Location
    Olympia, WA
    Posts
    1,917
    I research (gotta love research) and then ask my naturopathic doctor.
    30 year old Mother, Midwife, Birth Doula, Herbalist, and Massage Therapist with sudden onset of IC approx. 2/16/05 (after a PAP smear and routine gynecological exam). I tried a HUGE list of natural and alternative treatments (including Cystoprotek, Desert Harvest Aloe, Aloe gel, Glucosamine/Chondroitin, L-Argenine, Quercitin/Bromelain, Marshmallow Root...etc) for the first 9 months of having IC, without much relief, until I finally researched and started Elmiron.

    My experience:
    ~Previously took Elmiron 100mg three times a day
    (9/29/05-7/06)
    ~Experimented with dosage (1-2 Elmiron a day recapped into a plain gelcap) and did well with occasional mild flares. (7/06-9/09)
    ~Stopped all together at the 1 year mark (9/29/06) for 10 days. Still felt good, with low-level symptoms.
    ~Decided to go back on it (10/16/06) to see if another year on it will bring me into full (zero symptoms) remission. Currently taking 1-2 pills a day, recapped into a plain gelcap.
    ~ 6/08...Tried to go off Elmiron again, had huge flare at the 3 week mark, went back on 100mg once a day for maintenance.
    -I went off Elmiron for 2 months due to pregnancy and had a complete relapse of IC symptoms to pre-diagnosis levels of pain/frequency. I then went back on Elmiron at 10-12 weeks, but was unable to take it further due to severe morning sickness. The 2nd/3rd trimesters were MUCH better IC-wise, and postpartum is the best I have felt in years. I am no longer on Elmiron for now.
    -20 month postpartum remission from 4/17/09 to 12/10/10.
    -Out of remission after a pap smear on 12/10/10. Pap smears are obviously the main IC trigger for me. Currently trying to cope with loss of the remission.

    Also doing:
    ~Sugar-free/gluten free and strict IC diet (With an emphasis on organic, alkaline and whole foods)
    ~Prenatal DHA/Fish oil supplement
    ~Vitamin D supplement
    ~Culturelle probiotic

  7. #7
    ICN Member Dixiefireball's Avatar
    Join Date
    Jan 2003
    Location
    South Carolina USA
    Posts
    6,851
    i research, ask question here on the boards, then take the information i have with me to my uro. I don't take anything new with my meds without his approval. I learned this a long time ago with trying new treatments. I was in so much pain i was looking for a quick fix, but with IC and other disease there is no quick fix out there. i use to say to myself that i would give it a shot for a week or two then if it didn't work heck with it. Now i've learned better and i learned from my own mistakes. when trying new treatments i give it at least four to six mths to see if i'm going to see a diff. If i hadn't followed that advice i wouldn't had those eighteen mths of remission i had. I'm fighting hard to get that back and believe once we get these uti i get under control i will gain remission back again. Everything takes time in order to work. However I do believe anytime we are trying something new we should have our pain under control also. If the new treatments your trying is for pain control remember it will take time, but ask your doctor can he/she help you out with something mild for break threw until you have had time to see if its going to work.
    I hope this makes sinces its pass my bed time and i've already had my meds, but i explained it the best i could.
    Oh and something else i've learned from other memebers only try one new treatment at a time never mix new treatments if you do you want know what is working or what is helping.
    Hope this helps someone.
    Rhonda
    Medicine taken daily or as needed:
    1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
    2. MS.Cotin 100mg 3x daily
    3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
    4. Fentanyl 100 mg Change every 48hrs.
    5. Gentamicin 80mg install after each rescue treatment
    5 Leviquin 500mg self start as needed.
    6. Klonopin 1 or 2 daily as needed.
    7. Prosed/DS as 1 every 6hrs as needed.





    I have IC, but IC doesn't have me anymore!

  8. #8
    ICN Member ICPrincess's Avatar
    Join Date
    Jun 2005
    Posts
    460
    The first thing I always do is enter the name of the drug or supplement into the search engines here. I read what the other members have had to say about it. What their experiences were. I then go to DrugDigest which has that wonderful interactive search engine. There you can enter all the drugs and OTC supplements you are taking now and cross reference it with the new potential drug or supplement to see what reactions there might be if any at all.

    I then go online and begin doing my own research. I do not take into consideration a place that might be selling the item. They can be biased (as this site might be for the items it sells). I try and find informational sites. I then gather everything together and make a decision. I do not always ask my doctors because they can be dead wrong about things as it is. If it's something really questionable like powerful herbs I have never heard of or components I am unfamilar with, I will then call and ask my Doctors what they feel about it. There are many wonderful things that my doctors never told me about that I had to learn on my own so I do not hang on every word they say to be frank. For something as simple as calcium, basic vitamins, aloe vera etc, no...I am not going to pester my physician there. I think through the many sources I can find online as well as cross referencing it with what I am taking now through the pharmacies search engine, is quite enough. If it is something that I am nervous about or that I am unfamiliar with, I will make the call. There is alot of wonderful information out there available to us online. The Internet is like one massive library. You can learn a great deal from it. It's also good to trust your own instincts about something. I think we all have a sixth sense to some degree. Call it intuition or whatever you will. We get vibes about certain things for a reason. Just as we do about certain people.

  9. #9
    Forum Manager ICNDonna's Avatar
    Join Date
    Mar 2000
    Location
    Oregon
    Posts
    32,578
    I learned fairly early on that if the only evidence that something is helpful is testimonials on a web site selling a product --- that I need to research more. I also check at http://www.quackwatch.org before trying anything.

    Donna
    Have you checked the ICN Shop?
    http://www.icnsales.com for US & Canada
    http://www.icnshop.com for all others

    Patient Help: http://www.ic-network.com/patientlinks.html

    Diet list: http://www.ic-network.com/diet/2009icdietlist.pdf

    You'll find my story at: http://www.ic-network.com/patientstories/donna.html

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    Anyone who says something is foolproof hasn't met a determined fool
    .....My Meggie.....

  10. #10
    ICN Member windwalker's Avatar
    Join Date
    May 2004
    Location
    Michigan
    Posts
    1,554
    Thats a good site Donna, I've checked there a few times

  11. #11
    ICN Member Katrina's Avatar
    Join Date
    Aug 2001
    Location
    Green Bay WI
    Posts
    9,904
    Thanks all! These are great ideas
    Faith, Hope, and Love,
    Katrina


    I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back! My hope story http://www.ic-network.com/patientstories/katrina.html
    http://mandksales.net
    IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    or find me on facebook http://www.facebook.com/kat671?ref=profile
    Be the Miracle! & Pay it Forward!

    carmelann@charter.net please contact me...I am here to help!http://health.groups.yahoo.com/group/ICinWI/ if your from WI please contact me!

  12. #12
    ICN Member Katrina's Avatar
    Join Date
    Aug 2001
    Location
    Green Bay WI
    Posts
    9,904
    Repost
    Faith, Hope, and Love,
    Katrina


    I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back! My hope story http://www.ic-network.com/patientstories/katrina.html
    http://mandksales.net
    IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    or find me on facebook http://www.facebook.com/kat671?ref=profile
    Be the Miracle! & Pay it Forward!

    carmelann@charter.net please contact me...I am here to help!http://health.groups.yahoo.com/group/ICinWI/ if your from WI please contact me!

Thread Information

Users Browsing this Thread

There are currently 1 users browsing this thread. (0 members and 1 guests)

Similar Threads

  1. I need help with BCG!!!
    By yvette in forum BCG (Bacillus Calmette Guerin)
    Replies: 19
    Last Post: 06-11-2008, 04:32 PM
  2. I wonder if this treatment could help some cases of IC??
    By ICLori in forum Other Treatments
    Replies: 5
    Last Post: 12-17-2004, 06:33 PM
  3. alternative treatment
    By heiwalove in forum Alternative Therapies
    Replies: 2
    Last Post: 08-14-2004, 05:29 AM
  4. Tb test for BCG study
    By Lyn40 in forum BCG (Bacillus Calmette Guerin)
    Replies: 11
    Last Post: 08-03-2004, 03:21 AM
  5. Scared of BCG
    By Ann Oliver in forum BCG (Bacillus Calmette Guerin)
    Replies: 4
    Last Post: 12-24-2001, 11:10 PM

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •