My visit with Dr. Kou.

[John in GR]

As many of you are aware, Cheri (my wife) and I recently visited w Dr. Kou in Portland re treatment through the use of Traditional Chinese Medicine (TCM) including herbs and acupuncture. Patti indicated that her MIL has experienced good results.

I knew I needed help. I did extremely well the first almost 4 years post diagnosis, even participating in a 25 k roadrace at the 3 year mark. See http://www.geocities.com/marlakins/who_is_john_hess.html .

At four years I discovered another rare illness, Sweet’s Syndrome, which is an outbreak of lesions based on an autoimmune wrong reaction. My reds went into the toilet requiring five units of blood. I was prescribed prednisone which worked great at first. Later, however, it became less effective. Higher dosages, but less results. I needed 8 more units between March and the present, I’ve been running high doseage prednisone and for about a month before visiting Dr. Kou, Cheri was giving me cortisone injections at the lesion sites to control the lesions.

All the literature will tell you that high doseage prednisone over extended time is very bad for the body.

Just before going out West my dermatologist after consulting w various experts, recommended Dapsone, another antiinflammatory drug that has the unfortunate side effect of lowering the red blood cells (just what I need).

So I wasn’t doing real well when Cheri and I arrived on June 8. To top it all off, Cheri got some sort of stomach virus, so she was in even worse shape than me.

I did have an opportunity to visit Jimbob and his good wife on the 8th. Jim can testify to the condition of my L ear. We visited w Patti and her family on the 9th. At that time both ears were bound.

On June 9 at 10 am Cheri and I entered the small neat offices of Dr. Kou. Dr. Kou and his wife were present.

Dr. Kou ushered us into one of the treatment rooms where we discussed my situation, treatment of blood disorders, and especially MDS. Although I don’t claim to be an expert, like many of you I have educated myself re blood disorders and especially MDS.

Unlike basically all of the alternative practitioners I have had the opportunity to deal with, Dr. Kou is definitely familiar with blood disorders. He really enjoys treating blood disorders because he has enjoyed much success. He was not surprisingly not familiar with the Sweets but he believes it will resolve as my underlying condition improves. He stated that he has had very good success with MDS patients, especially those who have not become leukemic.

Of course, I wanted to know what he meant by “very good success” or “very good prognosis”. He indicated that based on his experience for persons in my situation (no guarantees, of course), he thought it not to be unreasonable to anticipate being cured, as in no more MDS in 1-2 years.

This is, of course absolutely contrary to the info we all received which was that the SCT was the only shot at a cure.

The next question is whether Dr. Kou is on the level or blowing smoke. We all know that when something sounds to good to be true, it usually is. On the other hand, skepticism can rob us of opportunity.

As an attorney for past 25 years, one of the skills I have tried to develop is reading people. I read Dr. Kou (and his wife) as being honest sincere people genuinely committed to the healing arts and who derive real pleasure from helping people. If they are in it for the money, they are not doing a good job. They charged us an amount that was ridiculously cheap, considering the time Dr. Kou spent on my difficult situation. We saw Dr. Kou Friday, Sat am and then he did something his wife said he never does which was to spend 3.5 hours on Sunday because my right ear flared after the L ear was resolving.

Dr. Kou subsequently called me back in Michigan to see how I’m doing. I am planning to go back in about a month, then monthly thereafter, until my condition settles down. It came as no surprise that these drugs had my system way out of kilter. He mixed up a formula that I take 3-4 times per day and I’m taking some pills. I am no longer shooting up cortisone and am tapering the prednisone (Dr. Kou understood that prednisone should be tapered and not stopped cold turkey). I stopped the Dapsone.

In a pamphlet at his office, a bit more of Dr. Kou’s background and experience was discussed and said in part:

“Mengke Kou is the fifth generation in his chinese medicine fanily. He started Chinese medicine training in his early age from his father and completed 8 years medical training (integrated Chinese and western medicine)and graduated from Chengdu University of TCM, one of the top 5 academic institutions of TCM in China. The teaching hospital has over 700 beds and the clinic has over 5000 patients per day. Mengke Kou was a chief physician in the Hospital. His practice history in China includes 4 years in cardiovascular dept and 3 years in CCU, 4 years in pulmonary ward, 7 years in blood disorder and oncology dept.

In 1997 Dr. Kou accepted a position as supervisor and staff practitioner of Classical Chinese Medicine Clinic at the National College of Naturopathic Medicine and has been serving the Portland community since then. He has had over 30 years clinical experience. . . Mengke Kou married his wife Jianchun Lei, Dr. Kou’s classmate in medical school.”

My L ear has totally resolved, and my right ear nearly so. Unfortunately, I now have a lesion on my r buttocks. Dr. Kou is sending out a new formula.

If you decide to use Dr. Kou, I do not recommend starting without a face to face meeting. In fact I recommend 3-4 appointments on successive days. Dr. Kou can look at you and tell the difference from the previous day and adjust the formula accordingly. He is intuitive and interactive, and I don’t believe he can do his best work over the internet or telephone without occasional face to face visits.

His office is a short distance from the Portland international Airport. His email is acuherbalkou@aol.com . His address is 725 NE 102nd which is just north of Glisan just East of I-205 which comes out from the airport. Dr. Kou’s tel is 503-261-9603 and his fax is 503-261-9600.

We are travelling from Mich to Portland because I fully believe that herbs can harm if incorrectly administered. I believe that Dr. Kou and his wife are a very knowledgeable combination. It is, of course, way way early to declare his program, for me, a success or failure. Cheri and I knew we had to move in a new direction and are very comfortable with our choice at this point.

Another option would have been to go with the Dr. Gonzalez approach. A friend from the forum is enjoying success with her mother’s condition. That would be my next approach. You can’t do them all, however.

Hopefully, this provides basic info for those who are interested.

John

[Jerry]

John …

Thanks for the report … keep us informed please … bet that lesion on yer butt is a pain in the a** … hope you get to feeling much better … we were worried about you …

Jerry

[cthomas555]

John,

Would Dr. Kou give you the name of a couple of his patients that he has “cured” of MDS who would feel comfortable talking with you?

Chris

[patti]

Chris,

I didn’t see John answering your question so thought I’d pop in. I’m not sure how often he checks the forum.

I honestly don’t know if Dr. Kou can give out patient names mainly because of confidentiality laws but if he could my guess is most of them would be in China because that’s where he practiced for so long.

He’s only been in the states 9yrs and I seem to remember him telling mom and I that he’d only treated 1 or 2 cases of MDS in the states and lots of people in China. I’m guessing people in the US don’t go running to chinese medicine doctors when they get MDS. He did tell us he was able to heal them though so I’d guess he’d have at least two names of people in the US. It’s a question I will ask him when we see him again. I think we’re not scheduled until the 29th. I’ll have to double check but I’ll let you know what he says.

patti

[John in GR]

Jerry, Chris and Patti,

Jerry, you win the bet. Your assessment of my butt lesion is 100% accurate. Dr. Kou’s poultice seems to be doing the trick, thankfully. It certainly feels a lot better to be solving the problem w some yucky looking crap than shooting up cortisone and taking nasty drugs.

Chris, I think your question is very legitimate. I also think Patti’s response is very accurate. Although Dr. Kou has been in this country 9 years, and although by his own admission he likes working with blood disorders, I don’t think he’s very good at advertising his expertise. He has a small office and treats a myriad of disorders. Patti’s MIL went to Dr. Kou through a referral, but had difficulty finding Dr. Kou. In any case, Patti sees Dr. Kou more often than I will, so thanks, Patti for covering me on Chris’ request.

John

Y

[CarolineG]

Hi John,

I am glad that you are happy with Dr. Kou and his methods. Half the battle is being comfortable with your health care provider. I have been thinking about you and Cheri and have been hoping that you would find good results.

Blessings,

Caroline

[KWJ]

Hello – I am new to MB’s but have been reading a lot lately here. Was wondering how much does it cost to be treated by Dr Kou. I have been trying to talk my Dad in to seeing him. Viadaza not working for him, he is not being sent up to OHSu for s SCT program.

And Patti – I live in St Helens and my parents in Columbia City – just down the street from you. Who does your mom see for MDS?

[patti]

Hey! Someone close to home! How rare is that?

Mom sees Dr. Christopher Reynolds at Providence Portland (off I-84) at Pacific Oncology (used to be Oregon Hematology Oncology). She has been seeing Dr. Kou at the Naturapathic College on 22nd and Pettygrove but her last appt. there will be the 7th. We are going to ask Dr. Kou to transfer her file to his private practice after that. It’s on 102nd and Glisan. At the college it cost about $100 to see Dr.Kou and for the herbs. She usually gets two full bottles of herbs so that’s a pretty cheap visit. I imagine seeing him at his private practice is going to be about the same. I did ask John how much that was and I’m telling you, it’s dirt cheap. This guy does not charge enough for what he does! If you’re ever interested in chatting send me a private mail and I’ll send you my phone number.

all the best,

patti

p.s. we lived in Columbia City for a few months when we first moved here while we were waiting to buy a house. On Pacific.

[KWJ]

My parents live on Pacific! When did you live there? It is a small world. My Dad saw Dr Segel today, no change in counts. He is in isolation again after this last dose of Vidaza. That sucks. He is having a BM biopsy Tuesday.

Thanks for the info on Dr Kou. I could not believe when I was reading about him here that he was in Port. I am trying to convince Dad to give it a try.

[patti]

We were there in 1995 from July 1 until Sept. 29. I think the address was 507 but I can’t remember exactly. It was my sister’s house and we had our travel trailer parked in her RV parking and hooked up to her house. We just stayed there until we sold our house in Idaho and bought this house.

How old is your dad? Where is his doctor at? I hope that your dad will go to see Dr. Kou. My MIL has just passed the 4 week mark since her last transfusion. That is amazing for her. Is your dad transfusion dependent? We are so amazed at what Dr. Kou has been able to do for mom. She feels so well and with her body actually healing we have so much hope. I guess her biggest risk is still her platelets at this point. We just keep praying she holds out with nothing major until Dr. Kou can start treating those. He says that platelets are the hardest to fix of the three blood lines. He said reds are easy and whites not too bad either. Platelets are much harder he said. Does your dad eat a good diet, take care of himself, etc.?

Keep in touch. It would be great to meet sometime.

Patti

[uno grasshopper]

Hi Patti:

That’s interesting that Dr. Kou says that platelets are harder to fix. My experience seems to confirm that, too. Both my reds and whites have returned to normal levels, yet my platelets still have never reached normal levels since diagnosis. Latest CBC was last Wed with WBC 4.7, ANC 2,200, RBC 4.22, Hgb 14.2, and Plts 118K. My platelets have hovered in this range for well over a year now. I’m not sure what’s holding them back from returning to normal. My question is why does Dr. Kou treat the platelets “after” he treats the reds and whites? Why not treat at the same time? And also what herbs or treatment does he recommend for platelets?

Thanks! And great to hear that your MIL’s transfusions are spreading out! For me, I noticed once I got past 5 weeks, I didn’t need them anymore. Hope she’ll be the same!

Take care,

Marla

[patti]

Hi Marla,

Good questions. Dr. Kou’s first priority was to get mom off of transfusions for what I think are obvious reasons. Getting someone elses blood is just not healthy long term and she’s had more than 45 units of blood since the inception of her MDS. Her current herbal formula has herbs focusing on the reds BUT he does have some for the whites and some for the platelets. Just not high quantities or strengths of those. He told us if you give platelet increasing herbs to someone with low platelets they will bleed profusely. I don’t understand how that works but it’s a chinese medicine thing. He said that while he’s treating her reds and whites that her platelets should get up to 60k with the few mild herbs he’s using and then once they hit that he will go whole hog with high doses and strengths of platelet building herbs. While mom’s reds have also been doing well of late she has also had a significant increase in her whites. At last check she had 800ANC’s which is huge for her. She struggles just to keep 300-500 most of the time. Her overall white cell count was up to 2600 or something. So we are also seeing a change in her white cells, albeit slower than the reds. I have no idea what these herbs are that he’s using. They all have chinese names. I only recently found out some of them have American names also. I have a list of her current formula and I will send it to you privately. But it’s mainly for reds, still, you might be able to research the herbs and glean some valuable info from it.

It’s encouraging to hear about the 5 week mark. If things continue to trend as they have we would hit that mark after the next two transfusions. She’ll probably get one next week so we’d have one more after that. It will be interesting to see if she does the same thing you did.

Not sure if any of this helped. I wonder if Dr. Kou would phone consult with you and give you a formula for platelets only? I know it is better to see him in person but that’s not always possible. Just a thought.

Take care,

Patti

[KWJ]

My dad is 64 and sees Dr Segel in Portland at the Rose Garden Cancer Center. After his last dose on Vidaza is white cells are low again and he is in isolation. He is transfusion dependent, every 2 weeks. He can’t have nuepregen because last time he had that he got Sweets Syndrome and ended up in the hospital for 2 weeks. I was afraid he was not coming home after that.

Does your sister still live there on Pacific?? My parents are really close to that, I bet they know each other.

[patti]

Hi KWJ,

My sister moved from Pacific many years ago. She moved to Scappoose to be close to us around ’97. Do they know for sure that the neupogen caused the sweets syndrome? I ask because John also has sweets but he doesn’t use neupogen. Interesting connection. Did the sweets go away after your dad stopped the neupogen?

Patti

[KWJ]

No they don’t know for sure, but Dr Segel does not want to do them now because that is the only thing that had changed, no other meds added. Could just be a coincidence but he is unwilling to chance it. So for now we wait. Waiting really sucks! LOL.

Sweets went away with predisone and no more neupogen. Thank gos it went away. It was horrible.

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