Heavy metal detox?

[nippersmomma]

Has anyone tried any of the therapies they are recommending on evenbetternow.com for IC. I read about the heavy metal detox baths and other things. I have had IC for 30 years and have spend a great deal of money on medical and alternative treatments. they also mention a book written by a woman who supposedly cured herslef of IC. i have never heard of anyone who was cured. Please tell me your thoughts on these things, thanks

[vm]

This might be a good area of the ICN Handbook for you to read in terms of figuring out which alternative treatments may or may not be helpful:

http://www.ic-network.com/newsletters/0502.html#F

It is titled: IC Consumer Awareness Alert - False Hope or Good Advertising? You Be The Judge

[purpleviolet]

Hi,

I wander about this site every so often. I've had IC over 30 years, too and spent more money than I care to think about on traditional and alternative therapies and I' m still the same. I'm frustrated in trying to see how therapies have worked with others - there's always wading thru all this emotional stuff which we all have in order to get to the info. I like a site called remedyfind.com because it just is ratings on therapies - no verbage. I encourage all to go there and rate what you have tried. It seems wierd that once in awhile someone seems cured on some wacko thing and others don't respond. Good luck and if your'e succeseful in your search post here please. I know I will.

[nippersmomma]

Thanks, I can relate. I have the most painful stuff tried and tried everything. I have just started with an accupuncturist after having 5 kidney infections this year, something that I have never had, my urologist is not interested in checking my kidneys out, I am starting to hate traditonal medicine. I have had one accupunture treatment and we are going to also try some NAET stuff. I have chronic sinus infections, allergies, muscle pain allover, fatigue, foggy mental status and ongoing respiratory infections on top of the IC. And I have continued to work 4 days a week. It often feels like I am on a merry-go-round that I can't get off. today however I feel good. I will have another treatment in 2 weeks, I will keep people posted.

[ICNDonna]

My IC was diagnosed in 1975. I'll have to admit that at first I was willing to try anything anyone told me might help --- the only thing it helped was to keep my wallet flat and my medicine cabinet full of remedies that did no good. I finally did a trash day and tossed them.

I have become extremely wary of remedies. The only ones I will even try are those which have had clinical trials, such as CystaQ and Prelief. And if anyone touts a "cure" it's an immediate red flag and I just don't even consider it.

The things that help me most are following the IC diet, Prelief, monthly instillations, hydrodistentions about once a year, and physician-ordered medications.

Sending warm healing thoughts,
Donna

[nippersmomma]

Thank you Donna, the last "new" thing I tried was prelief which I like, before that I tried heparin instillations but it was way too irritating for me. Currently the only things I am intersted in are things that are not painful, I have had my limit. This IC board has been a godsend! Best Wishes!

[anxious one]

(A note from ICNDonna - Neither the ICN, nor any other IC organization in the world, has recommended this book. It is one patient's opinion.. not backed by research. We recommend "The Interstitial Cystitis Survival guide" by Dr. Robert Moldwin as a more reliable option. My apologies, but, for legal reasons, we must add this to any message posted on our boards which recommends this book.)

Hi there, it's funny I found your post because I was just about to post something very simlar... I just finished reading Catherine ******s "Awakening from the tears" I'm wondering if thats who you were taliking about??? Anyway, she claims to be "cured" from IC... mind you she must have spent loads and loads of money... she completelydetoxed her body (not a bad idea if possible, I wouln't think) but she had about a zillion therapies, took all these supplements, protein drinks, noni juice, wheatgrass juice, vitamins etc... now I alread take a few supplements (that I can tolerate) and already it costs me a bomb.I see a chiro for my back and that is expensive.

When I was working I tried spiritual healing, kinesiology, natural therapies. reiki, bowen therapy and others. My IC got worse. But if you listen to C. ******, she basically says that it's mind over matter- if you don't believe you can heal you won't. Now I believe this to some degree, but does this mean I am keeping myself sick???

What do you all think??? If we commit ourselves to a similar regime (if we can afford it, I know I can't) can we cure from IC??? She says mainstream medicine makes IC worse... is that true??? Is it just making our bodies more toxic???

I would love your feedback... :idea:

Sara

[vm]

Just my opinion, but I don't buy into much of that. I know there are wonderful alternative therapies that are helpful --- but when any one method says it is a "cure" for IC... I just don't buy it.

[Imustpee]

I was diagnosed in 1976...I tried D.M.S.O. a few times with no luck. So far Elmiron and Nortriptlyne are working for me..

[purpleviolet]

I became interested in NAET after I read some book about somebody claiming it helped IC and after an acquaintance of mine told me her daughter's soy allergy was eliminated. So I trotted to my nearest NAET naturopath to try it. First she tried some one dose homeopathic formula based on my personality and I just got a flare and not a molecule better, so I returned for more assesememt. She recommened I go see her partner across the hall for some allergy testing that was some machine hooked up to these things I held in my hand. She dropped different vials into the machine and listened for the tones the machine made. When the tone was low, I was "allergic" to the substance in the vial, if the tone was high, I was not. Well, I was allergic to about 3/4 of the substances, practically my whole diet! I was mad and never returned. I figured it would take an enormous amount of NAET to eliminate all these so called allergies, and that it was some sort of racket worked out between the two of them. It is conc :toosh: ievable that I have a the 'leaky gut syndrome' which I think probably exists, but I couldn't stomache spending all those bucks on an unproven therapy. Andrew Weil doesn't recommend NAET. However, if anyone thinks it truly works on IC, let us know!

[nippersmomma]

Very interesting, yes I am talking about that book, I am also reading the NAET book and there are ways to do the stuff yourself. I have tried homeopathy, I have tried hypnosis, I have tried therapy, I have tried affirmations, praying, I even had a spiritual tatoo done over the area in my back where I think the nerve does not work. all these things helped me keep going. I probably have fibromyalgia and IBS but have never been diagnosed, I am done with that. The pain I have suffered with legitimate treatments and the money I have spent on those brought me to the brink. Last year my drugs alone were almost $5,000, that is outrageous. I think for me the IC is related to systemic allergies of some kind and a nerve functioning problem. I know it gets worse when I have emotional problems. I think what works for me will not necessarily work for others but I am going to try it. The accupuncture treatment was fine, no real pain, I could handle the needles and have to say it took away some of my pain. We will see what the future brings. Thank you all for being here!!!