Confused granddaughter looking for answers

[Jack_dup1]

I’m sure Patti will say ‘if only I would have found Dr. Kung Pow sooner”.
None of this is disrespecting John, but you surely have to remember how disrespectful and critical John was of conventional medicine, expecially in the beginning.
Maybe if he would have sought conventional treatment sooner rather than later. I always remember him saying “do a coffee enemia daily, but don’t drink coffee”, with that kind of reasoning I couldn’t take any of it seriously.
I am truly sorry for John and his family, it is a loss for all on the forum, he had his beliefs and followed them. John was a lawyer and did not hesitate to voice him opinion, I don’t think he would be-grudge us ours. The last time John posted was when he was asked to name someone who Dr. Kung Pow had healed, no response. They say there are privacy laws, but don’t you think that if there were someone he had healed, they would gladly want there experience shared.
I’m sure I will loose another star for this honest opinion.
Jack

[KWJ]

Tia – I am so sorry for you loss and Cheri too. This disease sucks and seems to take down everyone with it.

[uno grasshopper]

John was scheduled to go back to Dr. Kou monthly. John wrote that he was “in the process of tapering” off his Pred. I have not seen anywhere that he ever “completed” his taper (I would have to ask Cheri to be sure, but this kind of a squabble is the last thing I would want to mention to her). John got e-coli before the month was out, and he called Dr. Kou about what he thought about taking the conventional meds. Dr. Kou told him to go ahead and take the conventional meds. Which, from my understanding he did. As a matter of fact he was hospitalized for his e-coli infection which had gotten into his blood stream. This had all happened by July 4, apparently less than a month after he visited Dr. Kou (maybe only about 2 weeks after, I’m approximating). Shortly afterwards, John got a staph infection and was back in the hospital for a month. Then after his release he had pains in his right thigh, which was soon found to be Sweet’s deep within his tissues. Surgery was done to clean it out and so another hospital stay. I’m sure you can see that John was being treated with conventional medicine at this point–two weeks or so after visiting Dr. Kou.

I’m not writing to defend Dr. Kou. It’s the information you’re trying to pass on that I take issue with. If you truly care about the “truth” then perhaps you should “inquire first” before telling people that John probably would have lived longer if he took Pred. John did take pred for more than a year “before” he visited Dr. Kou, and as I stated earlier, he wrote to me and told me that the high dose pred was becoming less and less effective. And since the Dapsone was lowering his blood counts, who would blame him for wanting off those meds?

Passing judgment on a person when you really know so little of what happened or what is in a person’s heart is offensive to me. I’ve seen annoying arguments on this list, but this type of thing just crosses the line for me. People have the right to choose whatever treatment they want whether you or I like it or not. I may not agree with their choice, but if they end up dying, I’m not about to start blabbing to the world how they made such a poor choice. We’re all adults here. We’re all struggling for our lives. No one wants to make a bad choice. And we all have brains and our “own” daddys. No one on this list has to be “daddy” for us to protect us from the “big bad alternative treatment boogie man.” When other people go through their chemos and BMTs and we get news of their deaths, do we see people saying stuff like, “Gee, if only they didn’t opt for a BMT, they might still be here with us.” No you don’t see that. Why? Not because it doesn’t happen, not because we all agree with the choice of treatment, but because that is just plain rude. Period. Someone died, family and friends are hurting. This is not the time for your petty preferences.

I’ve seen complaints of Patti giving out medical advice. Well isn’t telling people that John should have taken Pred for his Sweet’s, which none of you know much about and you don’t even know John’s pred history, doing just exactly what you attack Patti for? Such hypocrites! Maybe Chris and Jerry and Jody can tell us all of John’s medical history and explain what his proper treatment should have been? Never mind what John wanted.

I only joined this group at John’s request to help answer someone’s question on iron overload way back when. Well, John’s no longer here, and frankly, I have no other reason to be here now, either. Honestly, this is the “first” angry letter I’ve ever written on the net. I don’t like my friends dying and I “certainly” don’t like untruths being passed around about him without him being able to defend himself or at least a family member who “knows” all the details.

I am done with this group.

Marla

[Jack_dup1]

KWJ and Marla
If you want to get “pissed off” do it to someone else, not me. I gave my opinion, just like John would give his, my complaint was John would belittle people for conventional treatment and that was wrong. I repeat, he did what he thought was right for him, just like I do what I think is right for me. I don’t know who is right or wrong or if there is a right or wrong. He was fighting the battle just like us only trying differnt weapons.
Jack

[patti]

Chris,

Thought I’d answer your question about my MIL. Mom has been seeing Dr.Kou and her regular naturopath since the middle of March this year. So about 8 months. She was diagnosed on Aug. 4, 2004.

Is it working? I’ll let you be the judge. When she started seeing him she was getting blood tx every two weeks. Within two weeks of taking the herbs and doing acupuncture her transfusions spread to 3-4 weeks. When we started her low hemoglobin before a transfusion was 6. Her low now is 7.6. Always. Our current goal is to get her HGB to 8. It was “expected” to take 1 year to do that. So we are within a few months of that time. I guess we’ll see when we get there. Her white cells have seen increases and decreases. Quite frankly, her doc thinks she has had leukemia for the better part of a year. She had more then 30% blasts in her marrow at diagnosis. So even before we started seeing Kou. Her doctor (read that as her hematologist) believes that every time mom’s body has started to kick into full on AML (meaning white cells quickly climbing) the natural stuff mom is doing forces the leukemia back down in her body. Does she still have it? Probably. The point is that something she is doing (or Dr.Kou or her naturopath) is keeping her body from going full force into AML. Can we prove all this from the doctor’s standpoint? Not without a biopsy. But they don’t want to do that because the last time we did something traumatic to her body it took months to fix it (when she got her picc line). However, this doc is the best qualified that we’ve had (out of 4). The only outward sign of leukemia we’ve seen was some blasts in her peripheral blood at one point. They were gone four weeks later (she CBC’s every two weeks). When mom got her picc line her platelets took a huge hit. Prior to that she’d maintained 8K and not had any bleeding problems for more then a year. She started to have problems after the picc went in and we’ve been dealing with platelets almost weekly since then. Dr.Kou has been busting his butt to try and boost her platelets enough to keep her from tranfusing them anymore. Platelets are the most difficult cell line to fix. After several months of pouring platelet herbs into her it looks like we finally may have put a stop to what happened when her picc line went in. Her platelets stopped dropping last week. We are hoping and hopeful that this means she’s done with transfusing platelets for awhile. We’ll know for sure by this Friday. Cautiously optomistic.

So I guess you can be the judge. We’ve only been seeing Dr.Kou and mom’s naturopath for 8 months. Prior to that we flew by the seat of our pants researching everything we could find for blood cancers (because nothing natural was available for MDS). We did an okay job as she surpassed what the docs said she had in time – but we needed guidance and we finally found someone who could help.

In the end, if God chooses to take mom home without healing her bone marrow (because quite frankly we see God as the ultimate healer) then we will have no regrets about any steps that we took. Mom has had a very good quality of life with very little medical intervention and for that she is very greatful. She is 76yrs old. She watched her husband go through chemo for lymphoma, twice. She had no desire to go that route and I respect her for that. And she wouldn’t have done anything to fight the disease (because of her age) except she has a retarded daughter she wanted to continue caring for. That was/is her only motivation for doing anything at all.

Prior to mom being sick I didn’t even know what herbal healing was. My family ate like crap (compared to how we eat now). Mom’s illness changed OUR lives – and hers.

The thing I see her being most affected by right now is the iron overload. The exjade is working but it is slow. Thankfully, it doesn’t affect her quality of life.

Perhaps what you may not understand about Dr.Kou (nor does it probably really matter to you) is that in China MDS patients are in the hospital for a year. He was an MD as well as a TCM doc. Every day he worked with those patients. Fine tuning herb changes daily, acupuncture for the bone marrow, diet changes, etc. As well as any medical care they needed for acute conditions. He had patients get AML that he sent for chemo to get them out of the acute stage. I think he’s a very balanced man. He sees mom once a week when she’s struggling with a particular issue and usually only every two weeks otherwise. He can only accomplish so much with that time. Do I care to visit with the chinese patients he says he’s healed? Sure. Unfortunately, I don’t speak Chinese and the phone bill would be hideous. Aside from the whole privacy issue. Would it change our course of action? Absolutely not.

So that’s how my MIL is doing. I would say she’s doing pretty well and at least equal too, if not better then if she had chosen to go the conventional route (which at the time she was diagnosed they only had vidaza – it was too new for any real statistics on it). Do I think others shouldn’t do conventional medicine? Every person has the make the decision that works for them. And that will be different for everyone. What I struggle with is that there was NOTHING when I went looking for my MIL for the natural route. A few of us at least aim to put the information out there so people can have a little more to research then we did.

BTW, John approached me privately about Dr.Kou.

Hope this answers your question about mom.

patti

[patti]

KWJ,

I’m sorry you got caught in this exchange. I pray that your dad’s transplant goes off without a hitch and he returns to you healthy and happy again.

Hey, you’re up the street from me! Perhaps we could lunch at Ichabod’s sometime? Take care and hang in there.

Patti

[ButchL]

Quote:

Originally posted by KWJ:
snip….
I think people are smart enough here to take every tip with a grain of salt and talk the tips over with a doctor.
snip…

This is the most important thing said in this thread. Take it all as advice and make your own decisions people. No one is right or wrong here if you just evaluate it for yourself……

[cthomas555]

It seems to me that the persons most yelling foul for me questioning the safety and efficacy of alternative medicines that are based purely on anecdotal reports, are the same persons who have consistently openly condemned conventional medicine on this forum. What hypocrisy!

[Jack_dup1]

KWJ,
You don’t know what you are talking about so I won’t say to much. How long have you been on this site. When Patti makes statements like “you need to find a Chinese Medicine Man” its hard not to say something, not a certain doctor or person, a chinese medicine man. There just may be a few chinese medicine med that are quacks, the race does not make the man or make him an expert. If I thought it would help, I would pay a Voodoo doctor to drip chicken blood on me, but at this point that would only help the voodoo man and the guy selling him the chickens. If you had followed Johns postings at all you would know he was very much against SCT, again, that was his opinion, and he was free to express it.
Jack

[Bkwits]

KWJ

Positive thoughts and prayers for your Dad as he goes through his SCT.

On another note — The forum is a free exchange of ideas, and there will be disagreements from time to time. Some discussions are pretty much shut down by an individual’s strong opinions. I hope that we can all express our opinions in a civil manner.

Barb

[Jimbob]

I read this forum throughout the day, almost everyday, but am not able or sometimes just not willing to post. Th bickering over what could be very useful information is ridiculous. I hope that no one would insist that a medical expert not provide appropriate care based solely on something they read on the internet. On the otherhand, using this site to get information to then research further is an important part of being able to make informed decisions. I doubt that there are people posing here as patients or caregivers in an attempt to confuse people while that does happen on some websites.
As far as complementary or alternative methods to treat this or other disease, the center that treated me (Oregon Health % Science University Hospital) now includes such information as part of the patient history and profile. I was really impressed when I went in for my last CBC and checkup. They now interview each patient to determine all of the meds (prescription or OTC), any supplements, herbs, other treatments or doctors they may be seeing. Also, the chief pharmacologist is now giving seminars to healthcare proiders and other interested people on Complimentary and Alternative methods.
Personally, I do not believe that using other methods caused me to have an extreme leukemic evet (false confidence and over-stressing myeself did that) but I do believe that I was able to have a much better quality of life up until that point and was able to have and recover from a SCT because I had faithfully followed alternative and complementary methods, with the “regular” doctors’ knowledge.
However one proceeds with their own care should be entirely up to them and I hope they make informed decisons instead of only using limited information.
btw, there are now colleges and medical centers that provide training and grant degrees that makes one elgible for state licensing in Oriental Medicine. That is something that one should determine about some “Chinese medicine man” that they might be considering.
Jim

[shirlsgirl]

KWJ, I wish your Dad the best of luck with his SCT. I really hope he can beat this. I would like to hear more of his story…

[Jack_dup1]

KWJ,
You have made this some kind of personal battle, Patti has been on the site for quite a while and has always been able to defend herself, all of a sudden it’s about you and you father. A SCT is the toughest decisions one has to make, I will also have to make it. I take supplements that I think help me, but I don’t say it is a cure, I just know it helps me. There are a lot of new people on this forum who are scared and desperate, they need facts and expert help, not just someone who talks like an expert, and this is not directed at Patti in particular, some of the advice she gives is great, but it is still just an opinion of what works, not based on scientific fact. You have tried tp paint me as something I’m not and to say every time Patti posts I comment on it is just plain wrong. You have me confused with someone else. PS Johns posts go back to 2003. I won’t comment on this crap any further.
Jack
Jack

[Caroline]

I don’t post often and when I do, I usually say too much. Forgive me for being verbose but I want to say my token piece.

Marla,

Would you please send Cheri condolences from Peter and myself? Tell her that we were looking forward to having lunch with her and John the next time they passed through town on their way to the theatre at the Stratford Festival. John emailed me several times and hoped that we could meet him and the love of his life in person. Then he stopped writing and I assumed that they got busy. I never expected that he was so sick. Patti, if you had known that I was talking to John, you could have told me that he was so sick but you didn’t know.

Now…..I am going to throw my 2 cents’ worth in here. I will apologize now if anyone gets annoyed with what I have to say. I don’t know what John’s circumstances were. In one of his emails before he met Dr. Kou, John told me that he was going to throw it all to the wind and let God plan his course for him. That was the last time I spoke with him. John was an educated man and he was also very strong in his faith. He liked some approaches and he disliked others. He did not shy away from voicing his opinions.

One year ago when we learned that my Dad was terminally ill, I entered into a nightmare that I still have not awakened from. Some days/weeks are better and some are worse. I think that we all feel this way. That foot is always ready to drop no matter how well we or our sick loved one seems to be doing in this disease. I am glad that I am a good typist because my eyes are squeezed tightly shut as I type this next part…..We are ALL going to die. There is NO magic bullet. HOW we die is about the only thing we can control and in many cases we can’t even do that. Some of us use conventional medicine, some alternative, some complementary. Some combine them and some do nothing at all. It was decided the day that we were conceived just when and how we would die. All we can do is learn as much as we can and do what feels right for us. Nobody can tell us that we have made good or bad decisions. BUT… we can and we should share what we have learned. I am so thankful for all of the different pieces of advice that I have received over the past year…you have no idea. Some of it helped Dad, some of it did not help him and some of it was not what he wanted to try. Dad is still chugging along. He has better days and worse days. Sometimes they load him up with medicines and other times he is on nothing but a good multi-vitamin and good home cooking. Scientifically, Dad should have been dead by this time last year. He was out raking his wet leaves today….nice Ontario weather eh Jodi?….if you are a duck. It really needs to turn to snow.

When I first found this site, I was terrified. After reading for a few nights, I felt a comfort from all of you…alot of people who became friends are dead and gone now. I felt welcome and I also felt like I could say anything without being chastised. Once a person told me that I talk too much but that wasn’t new news to me. All I did was stop posting so often. Anyhow, I did not hesitate to ask questions or to give my own personal advice based on what we were doing with my Dad.

I have to wonder how new people feel when they find this site now and start desperately searching for that piece of advice that will save their lives? People who are in the same position that we were in at one time…scared, unsure, feeling like they just had the rug ripped out from under them. As they read post after post, do they feel welcome and secure the way that we did when we first came? Do they hesitate to join and ask their questions or give their opinions for fear they they will be admonished? I think I would probably read but not post if I were new. Some of this bickering is pretty heavy business. We are beginning to allow our feelings to dominate. Shouldn’t it remain more clinical? If Patti wants to share alternative therapies….then share. If someone else gets relief from taking Tylenol, then share. Whoever reads the advices given MUST weigh everything that they read out and then make decisions that they think will benefit them. I understand that some of us get on each other’s nerves. I’m sure that some of you are thinking that you wish I would shut-up right now. But, there are others who are getting something out of what I have to say. I think that we should all continue to say our pieces and be allowed to say them. We can disagree nicely and clinically but maybe we can think of the New Guys who are reading this before we say things that may make them feel even more insecure. We are here to help each other….not to chase people away.

Again, I don’t want to stir the pot and make anybody angry. I just want us all to realize that like it or not…we are in this together and we will all benefit from agreeing to disagree instead of making it personal.

I am finished now….

Blessings,
Caroline

[Tia]

Thank you all for voicing your concern. Some of the things said here have really helped lead the way to more research. There have also been a few post that have the answers I was looking for. Thank you all once again.

Tia

[Author]

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