icnmgrjill
07-03-2006, 10:33 AM
Does this sound familiar??
You're desperate to find relief for your IC. Doctors aren't giving you hope. You might have tried a therapy or two with no luck. Then you hear about a website that shares a few recovery and/or success stories from patients with herbs. The problem is that the doctor is in another state and the only way that you can get care is by paying exorbitant phone consultation fees.
Then, without ever examining you, they recommend buying expensive chinese herbal supplements that they, conveniently, sell. Desperate for relief, you believe the claims and provide your credit card number.
A few months later you realize that you don't even know what you're taking. The practitioner will not disclose to you what is in the product and refuses to tell you and/or your doctor the ingredients. Alarm bells start ringing in your head. Concerned?? I believe that you should be.
This is a true story happening to patients today! Here at the ICN, we've received a number of reports from patients who fell into this scenario and, in one case, they felt that it damaged their bladders badly.
(1) CLAIMS ON THE WEB CAN BE MISLEADING
Desperation is dangerous and you should NEVER believe claims on the web unless they are validated by atleast one research study. Remember, the Oxford Scale for Evidenced Based Medicine rates a patient testimonial as an "F"... along with information provided by someone who is trying to sell you something. And, for all we know, these patient stories could be fictitious. I, for one, have few, if any, succcess stories from patients who found relief with chinese herbs and more who have bad stories to tell.
(2) KNOW THE CREDENTIALS OF WHO YOU ARE TALKING WITH
Look at the credentials of the person who is stating that they can provide you medical care by phone. What academic training do they have?? Have they attended a medical school?? Remember that a Degree and/or Certification in Acupuncture is not nearly as rigorous as an MD with a specialty in urology or gynecology. If you won't pay a urologist or MD $300 to talk on the phone, why would you pay someone with less medical training to provide medical care. I don't believe that you should rate the quality of information from an acupuncturist as being more reliable than a physician.
(3) ANYONE CAN CLAIM TO TREAT IC. WHERE'S THE PROOF??
Are they making claims about treating IC?? If so, how do they justify their claims?? Have they completed any research studies??? Have they published their findings??? Do they work with other IC researchers and clinicians. Are they affiliated with an IC research center? Do any of the major IC researchers even KNOW about their work??? Have they attended a single IC research conference?? If they say they treat "IC" but noone in the IC research community is aware of their data or has reviewed it, it may not be as valid as it sounds. The respect of the IC community should be earned with valid research studies, not just assumed. Ask for scientific evidence!
(4) TREATMENT BY PHONE IS QUESTIONABLE
Phone treatment is questionable, especially when they are asking exorbitant phone consultation fees. I don't know of any major IC clinician who charges for their patients for phone calls. That's what their salaries pay for. I want the doctors who give me advice to have looked in my eyes, who have studied my body and done extensive histories. There's no better substitute than seeing a doctor in person, especially if you're in a flare so that they can see and examine you when you need it the most.
(5) IT COULD BE FOOLISH TO SWALLOW A PILL WITHOUT KNOWING WHAT IT IS
The first rule of therapy is to "do no harm." But, if you don't have an ingredient list, you can't be assured that the product that you are taking is safe for you. What if it includes an herb that you are allergic to. What if it includes a chemical that you are sensitive to. Without that ingredient list, you can't make a determination as to whether this product is right for you.
Every prescription comes with an ingredient list of both active and inactive ingredients. Pharmacists will always provide that information when asked. To blindly swallow a pill or capsule without knowing what is, I believe, foolish.
In "Tips For Seeking Alternative Care" (NY Times, July 10, 2006), Dr. David Katz stated "No legitimate health care provider should have anything to hide from professional colleagues. If your alternative care provider will not share their impressions and treatment plan with your conventional doctor, you should go elsewhere." I agree. If a practitioner is not willing to share what their "formula" is with you, even if it's customized for you, then you've not been given enough information to take this product. The FDA would never allow this on a product sold on the shelves of any drug store today. The FDA has VERY STRICT labelling laws.
Conclusion -
I know that some of you are desperate because I was desperate too. But, there are so many warning signs here. YOU have to be an informed consumer. YOU cannot give your power away to someone you have never met. YOU have the right to know what treatment is being used, with as much specific information as you'd like. YOU have the right to see qualified doctors. YOU also have the right to risk your money in any way that you choose.
This issue has been going on for many years now!!! PLEASE BE CAUTIOUS! Anyone can write a success story and then try to sell you something. That doesn't mean that it's validated by research and/or that it helps patients. We need statistics. How many patients has it helped?? Has any other provider been able to reproduce those research results?? Has any of this data been reviewed by peers and/or published in research studies. If you don't have the info, well then... it's a risk at best.
Jill
You're desperate to find relief for your IC. Doctors aren't giving you hope. You might have tried a therapy or two with no luck. Then you hear about a website that shares a few recovery and/or success stories from patients with herbs. The problem is that the doctor is in another state and the only way that you can get care is by paying exorbitant phone consultation fees.
Then, without ever examining you, they recommend buying expensive chinese herbal supplements that they, conveniently, sell. Desperate for relief, you believe the claims and provide your credit card number.
A few months later you realize that you don't even know what you're taking. The practitioner will not disclose to you what is in the product and refuses to tell you and/or your doctor the ingredients. Alarm bells start ringing in your head. Concerned?? I believe that you should be.
This is a true story happening to patients today! Here at the ICN, we've received a number of reports from patients who fell into this scenario and, in one case, they felt that it damaged their bladders badly.
(1) CLAIMS ON THE WEB CAN BE MISLEADING
Desperation is dangerous and you should NEVER believe claims on the web unless they are validated by atleast one research study. Remember, the Oxford Scale for Evidenced Based Medicine rates a patient testimonial as an "F"... along with information provided by someone who is trying to sell you something. And, for all we know, these patient stories could be fictitious. I, for one, have few, if any, succcess stories from patients who found relief with chinese herbs and more who have bad stories to tell.
(2) KNOW THE CREDENTIALS OF WHO YOU ARE TALKING WITH
Look at the credentials of the person who is stating that they can provide you medical care by phone. What academic training do they have?? Have they attended a medical school?? Remember that a Degree and/or Certification in Acupuncture is not nearly as rigorous as an MD with a specialty in urology or gynecology. If you won't pay a urologist or MD $300 to talk on the phone, why would you pay someone with less medical training to provide medical care. I don't believe that you should rate the quality of information from an acupuncturist as being more reliable than a physician.
(3) ANYONE CAN CLAIM TO TREAT IC. WHERE'S THE PROOF??
Are they making claims about treating IC?? If so, how do they justify their claims?? Have they completed any research studies??? Have they published their findings??? Do they work with other IC researchers and clinicians. Are they affiliated with an IC research center? Do any of the major IC researchers even KNOW about their work??? Have they attended a single IC research conference?? If they say they treat "IC" but noone in the IC research community is aware of their data or has reviewed it, it may not be as valid as it sounds. The respect of the IC community should be earned with valid research studies, not just assumed. Ask for scientific evidence!
(4) TREATMENT BY PHONE IS QUESTIONABLE
Phone treatment is questionable, especially when they are asking exorbitant phone consultation fees. I don't know of any major IC clinician who charges for their patients for phone calls. That's what their salaries pay for. I want the doctors who give me advice to have looked in my eyes, who have studied my body and done extensive histories. There's no better substitute than seeing a doctor in person, especially if you're in a flare so that they can see and examine you when you need it the most.
(5) IT COULD BE FOOLISH TO SWALLOW A PILL WITHOUT KNOWING WHAT IT IS
The first rule of therapy is to "do no harm." But, if you don't have an ingredient list, you can't be assured that the product that you are taking is safe for you. What if it includes an herb that you are allergic to. What if it includes a chemical that you are sensitive to. Without that ingredient list, you can't make a determination as to whether this product is right for you.
Every prescription comes with an ingredient list of both active and inactive ingredients. Pharmacists will always provide that information when asked. To blindly swallow a pill or capsule without knowing what is, I believe, foolish.
In "Tips For Seeking Alternative Care" (NY Times, July 10, 2006), Dr. David Katz stated "No legitimate health care provider should have anything to hide from professional colleagues. If your alternative care provider will not share their impressions and treatment plan with your conventional doctor, you should go elsewhere." I agree. If a practitioner is not willing to share what their "formula" is with you, even if it's customized for you, then you've not been given enough information to take this product. The FDA would never allow this on a product sold on the shelves of any drug store today. The FDA has VERY STRICT labelling laws.
Conclusion -
I know that some of you are desperate because I was desperate too. But, there are so many warning signs here. YOU have to be an informed consumer. YOU cannot give your power away to someone you have never met. YOU have the right to know what treatment is being used, with as much specific information as you'd like. YOU have the right to see qualified doctors. YOU also have the right to risk your money in any way that you choose.
This issue has been going on for many years now!!! PLEASE BE CAUTIOUS! Anyone can write a success story and then try to sell you something. That doesn't mean that it's validated by research and/or that it helps patients. We need statistics. How many patients has it helped?? Has any other provider been able to reproduce those research results?? Has any of this data been reviewed by peers and/or published in research studies. If you don't have the info, well then... it's a risk at best.
Jill