this person did mention a couple of sources for Omega 3 but otherwise, how did you learn of him Norma?

Good Morning Helen, Well you know how trusting I am and he was sending me private messages with spelling errors galor, not what a typical physician would write for sure. Also was using phrases that didn't fit what he was talking about. He claimed to have a very ill child with Chrones disease and that she was in liver failure. None of it fit.. He even went as far as giving me the email addy of a doctor in California that had PKD, which he continually spelled "PKD" that had used these omega 3's to cure his disease. Complete remission he stated. So just for the heck of it I sent an email to the address he gave me...so such person existed. I was scammed big time, but you know how I am. I did a little investigating and found out thathe has done this before with other support groups, only uses different screen names. So I talked with Ruth about it, sent her the emails he had sent to me and we both decided that I am been scammed. Why would a person do such a thing? Sick in the head? maybe, but he won't be doing it anymore, not on our support group anyway.

Boy, talk about spelling errors, I'am at it big time this morning. He continually spelled PKD, "PDK" is what I meant to say. This is just one of many clues that gave him away.

his post sounded like a scam but I have learned not to judge people by their spelling. I am always amused when I pick up simple things like shopping lists that Jim writes, if he leaves me a note it can be hilarious. I recently told my 9 year old grandson he spells better than Jim and he was surprised, but its so true.
anyway, Jim would be the last person to try and scam someone.
the thing is Doc didn't seem to be trying to get anything from anyone, unless he is an owner of the products he promoted.

In terms of scam, he's peddling a dangerous treatment to unsuspecting, desperate patients (see the side effects of the Omega-3s in my post). And that was only 1 gram of purified Omega-3s, not 15 grams! I can only imagine the potential damage that 15 grams could do, especially if it's from the wrong source (e.g. borage, which is found in health food stores and has no warning label...now that will put you in liver failure!). It will also thin your blood so much that any leaking aneurysm will be fatal; you will have no clotting factors available in your body to stop the any bleed (welcome to the world of self-induced hemophelia!

And a "complete remission" of PKD, give me a break! How do you get a complete remission of a gene? It's present in every cell of the body and affects way more than JUST the kidneys! This guy grossly misrepresents who he is and what he knows and thus is a danger to others. And THAT is why he needs to be banned from DS, which he has undoubted been time and time again and just keeps coming back under a new name and email address

BTW, in his message to Norma he claims he's been giving this message to people in various forums for 7 years, yet he joined DS on Wednesday (2/8) apparently for the sole purpose of targeting our group with his Omega-3 message (probably has a program that trolls message boards for the term "Omega-3") and to try to scam Norma (who, since she innocuously sent an email to the address given, will probably receive all sorts of spam, phishing attempts and illicit/lewd emails even though the email address didn't technically exist. She still sent an email to it and that may well have generated a program that sends out her email address and IP address (which is embedded in the header information of every email) to hackers and spammers indicating someone is prime for attacks).

BTW, it's very easy to check someone's history within DS to include when they joined, their profile and to view all of the messages they've ever posted. His are exclusively to us (and possibly anyone else who responded under the same thread (undoubtedly Dawn also received a message; he as much told Norma that he sent a message to the woman with the sick child...obviously has no clue who anyone is or anything about PKD...or PDK!). If you don't want someone researching you, make your profile private, not just private within DS (which means only DS members, which can be anyone, can see your information). Private means only your friends, those who you choose to accept as friends (and I wouldn't recommend it be everyone asks) and can remove them as friends at any time, can see your personal information, and that can be as detailed or as limited as you want (all you "have" to supply is a user name and a email address that only DS managers have access to). You can also make your journal and other information private even if your profile isn't. Just some internet security ideas to keep your identify safe.

So spelling errors or not, this so-called doc is misrepresenting himself and a treatment/cure and thus needs to be banned as dangerous to others. We wouldn't tolerate someone selling snake venom as a cure; why should be tolerate this alleged doctor?

It saddens me that he referred to his work as a "mitzvah" which is an act of kindness or an act done out of a sense of moral or religious duty. Do what you will but don't claim to have right on your side when you are spreading false hope that could cause real damage.

This is Doc2 I have made no claims although I am a phsyician. Norma claims Im a scam artist, what have I tried to sell? I have shared information that I felt was valuable and am disappointed that that norma would be so rude. I have replyed all of normas email honestly and politely. i wish she had afforded me the same courtesy.

Doc2

Dear I havepdk This is the first time that I have ever posted on any PDK site or ever about PDK. In a reply to norma I mentioned that I have posted on crohns site in regards to my daughter who has crohns and sclerosing cholingitis for the past 7 years ( just so you dont have to look it it means she is developing terminal liver faliure ) I am selling nothing and supplied norma with the email of the doctor who has PDK and put it in remission using omega 3's. In regards to omega 3's the standard dose that patients I am seeing have been placed on by there family physicians or cardiologist is 3 grams and this is widely accepted as a safe dose; although as I stated earlier most fish oils have limited active ingredients and it is more important to look at dosage. I spent last wed reviewing hundreds of pages of research on Omegas in relation to vascular disease and arthristis and in all of these articles side effects were minimal if any. I do have concerns about the quality of many supplements out there and therefore I recommended the brand intergrative theraputics. Interegative theraputics is one of only a few companies that is voluntarily and at there expense evaluated by the FDA for quality and purity. To recap
1. I shared information that I thought would be of interest to people on this forum
2. I am selling nothing
3. I provided the email to Norma of the doc with PDK who had shared with me his success on treating himself and family members with this disease so that she could verify this information and follow up for herself.
4. I was maligned on this friendly loving forum for providing information that I thought might be of interest.

I pray that in the future you wont be so judgmental to new members.

Doc2

OK I'am going to be the first one to say that I'am sorry, if I am wrong. I do however, find it difficult to believe that a physician can tell us that it's ok, for us to take massive doses of OMG 3's. He still has not told us how that can happen when research in medical study's warn us of the complete opposite. Particularly in over the counter omega meds and their purity. I did send an email to the person that you told me had a complete remission, and I got no response. Why would that happen? I would think he would be shouting it from the mountains!

Because you seem to be unaware of the genetic issues with PKD and that it's impossible to be in complete remission from this disease, I have every reason to be seriously doubtful. Maybe it's your inexperience with support groups that provoked you to write such a letter to us all. Perhaps I shouldn't have believed you without asking more questions?

Essentially, we need more information from you if you expect us to believe that you truly know what your talking about. You can't just walk into a support group and tell them that you know there is a cure or however you might like us to believe, walk away and not expect reprocussions. We know all about PKD, you do not! First of all I would like to inform you that this disease is called "Polycystic Kidney Disease" PKD, not as you refer to it time and time again as PDK. That is basic, you are a "physician" My GP does not continually refer to Polycystic kidney disease as something else. She at least knows the difference in spelling, not much more, but at the very least, she knows that much.

There are guidelines for people in kidney distress or failure. One of them are kidney dosages and believe me, you are not anywhere near close when you talk about the dosage that we as kidney patients are allowed to have. Any ordinary physician would be more than aware of that. I'am not being critical as I also know that there are more doctor's than not, that know little to nothing about Polycystic Kidney Disease.

All we ask is for you to explain yourself. We are a family here and we don't accept things like this litely. We have a disease that is cruel but we learn from each other how to live with it and how to make the best of what we are given. Essentially we know what we are talking about, that is Paramount! Don't try to fool us as we are a force to be dealt with!

Norma....

I guess that almost a apology is better than none. I do apologizes for being a little dyslexic in writing PDK and PKD . You are right there is no research that Im aware of on omega 3s and PKD. This is why I shared with you the contact info of the Physician/patient who has used this as a treatment and has claimed to gain remission. If I had PKD I believe that I would want to speak to someone whos claiming this success. You have also repeatedly talked about the research on the dangers of Omega 3s I would appreciate you sharing the research. Omega3s do have blood thining properties. but unless you are on a coumadin/ aspirine regiment this is unlikely to be a issue. Mayo clinic and the Linus Pauling institute both state that a 3 gram dose is generaly safe dosage and the new pharmacuetical LOVAZA is a 4 gram dose. At 2 grams per 100 gram serving one pound of salmon would provide approx 10 grams of omega 3's probably more than I would eat in a meal but most of us wouldnt think of this as a dangerous meal. I regards to where is the research, who would perform it and why would they want to there is no finanial incentive in selling omega3s. A great example is my daughter when diagnoised with Crohns and PSC , she was to be place on horrible meds with severe side effects. We were blessed to be led to a doctor who has a very unique treatment and used a common antidepressent (wellbutrin) as a TNF inhibitor which appears to have the same action as remicade and humira.
My daughter gained remission in a very short period of time on the wellbutrin. The difference between those drugs and welbutrin is that wellbutrin has few to no side effect and costs $15-30 per month. Remicade costs $6000 per dose which for many is every six weeks and it causes liver damage. I have as I said in my letter to norma posted for seven years on crohns web sites and in that time have had six people take the wellbutrin and gain remission of their crohns but more frequently I am met with sceptisizm. I am tired of beating my head against the wall. Crohns patients suffer horribly and yet most have been unwilling to look at another possible option because this isnt a standard medical treatment. The maker of wellbutrin also makes crohns meds and has a crohns med under trial why in the world would they want this med to become a treatment. Please feel free to verify this if you like the doc my daughter originally saw is richard kast , if you google his name and buproprian youll bring up many references so tha you can verify that im not trying to scam you. The doctor with PKD who shared his experience with me about his PKD was likely hoping that others would hear and that it might help them. Do with it as you like.

Doc2

I appreciate your coming to our support group with this information about Omega 3's. I used to take Omega 3's in capsule form but then I asked my nephrologist and primary care doc if these capsules may be not good for my polycystic liver. I felt pain after taking the capsules in my liver. So, I stopped them at my docs request. I tried organic shelled hemp seed from local health food store and 2 tablespoons a day once a day does not hurt my liver. I'm getting 2000 mg. of Omega-3 and 11 Grams of Protein per serving. Plus it contains all 10 Essential Amino Acids. Plus is has a delicious nutty flavor and is fresh plant food that I enjoy on my cereal.
Thank you for your views. Welcome to our support group. Thank you for sharing about your daughter's illness.
Let's keep supporting one another as we share our opinions with each other.
Respectfully,
Jessica

Jessica thanks for the reply, you spoke of polycystic liver disease, did you mean kidney disease? If you did maybe my previous dyslexia is contagious.

Doc2

doc2,
I have Polycystic Kidney Disease and Polycystic Liver Disease. It is all because I inherited the gene from my mother. If you read on the PKD Foundation website you'll learn how this is genetic. We can't go into "remission" but we can hope to slow down the progression of this disease. I think your doc friend who went into "remission" may have used another term to describe "slowing the progression"of this disease? What field of medicine do you practice? Are you a M.D? Are you a Naturopathic or Allopathic Physician? What kind of doctor is your friend with PKD? There are things we do to control our symptoms but there is no cure. There is hope though.
Jessica

The doctor who i spoke of is a DC and a nurtitionist. I am also a DC and I was not aware of polycystic liver disease. My daughter has sclerosing cholongitis another liver disease without a great outcome, we anticipate her being on a transplant this summer. I would agree with you that the omega 3's are not a cure but if they keep the disease in remission its the next best thing. Ive enclosed a couple of interesting links.

Doc2

http://www.barleans.com/literature/flax/127-flax-an-kidney-disease.html
http://www.ncbi.nlm.nih.gov/pubmed/20493605
http://wiki.answers.com/Q/Food_good_to_eat_with_polycystic_kidney_disease

Does your daughter have PKD as well? So sorry to hear that she is ill.

Yes, PKD can affect more that just the kidneys. I also have PLD (Polycystic Liver Disease). Not only that, it can contribute to anurisms, heart problems, cysts on other organs. It is a curious disease. I would like to echo what others have said about this disease being heriditary. And, unfortunately cannot go into remission. The cysts will always be there, and once the damage has been done, we cannot go back and it does not go away. As Jessica said, we may be able to slow the progress, but at this point, there is not evidence that the disease can be stopped. Another note: only 50% of all PKD patients actually have to go on dialysis or have a transplant. It may very well be that the Dr. you speak of was one of the lucky ones that would not progress into dialysis or transplant, and in taking preventative measures, was able to slow down the process even further. But again, I don't believe remission is possible. Maybe your definition of remission is different than mine? My understanding of remission is "being eliminated". When you hear of a cancer patient being in remission, you know that the cancer has "been eliminated"...at least for the time being. In PKD patients, that is not possible, because it is a defect in our genes.

Thank you though, for your input. I think we all like to hear the possibilities, but we are all very aware that each one of deals with PKD in our own way, and what may work for one person may not work for another. So, we each take the information that we have learned or come across to our own Dr.s and they help us decipher what may or may not work for us. In fact, a good friend of mine is selling vitamins, that a woman she knows, has been told she will not have to go on dialysis any more. Of course my friend is encouraging me to try them, but I told her not until I discuss this with my Neph. PKD kidneys do not fail in the same manner that other kidney diseases do, therefore, some remidies may actually be more harmful than good.

Please understand that we don't mind your opinions here, but others have been burned before, and we are just cautious.

God Bless,
K~