Chinese medicine update

[patti]

Mom’s been at the chinese medicine thing for some months now (4? – I can’t remember). She has consistently been adding 5 days to her transfusions. When we started she was transfusing every 10 days. She had a transfusion yesterday and it was 3 weeks and 5 days from her previous one. Her white cells are just dangling below the normal range and she has neutrophils again!! We are hopeful that she’ll be off of the neupogen shots after this next 4 week round. She is continuing to do really well and feel really well. Her last CBC showed her HCT low (22.6)but HGB steady at 7.7. The magic number for the chinese doc is a HGB of 8. She’s been maintaining a HGB of 7.7 for the past few months now no matter how low her HCT goes. So we’re getting there! But for now, we’re pleased to see this stuff is actually working. It’s a slow process to be sure.

all the best,

patti

[eve]

patti

really amazing that your mom is able to function well with a hgb of 7.7 – my dad at 10 is very tired

good luck

eve

[CarolineG]

Patti,

That is wonderful news. You were so discouraged a few months ago and now your MIL is improving so well.

Did you say that your insurance covers the Chinese Medicine and Naturopath?

Best wishes,
Caroline

[patti]

Hi Caroline,

Nope. Insurance doesn’t cover any of it but it’s not that expensive (compared to a doctor’s visit). It’s about $100 (USD) when mom sees the Chinese guy and a little less when we see the regular naturapath. The herbs themselves run about $60 a month for mom (about $30) for me. So, in general, it’s cheaper than going to the regular doctor by the time you pay for insurance and co-pays.

Eve, mom is usually more tired at 7.7 but that’s about the time we transfuse her anyway. She only starts getting tired about 3 days before a transfusion which isn’t too bad by most standards. I think men would notice the anemia more at the lower number because their bodies in general are different/larger, etc. But right now we’re just glad to be stretching the transfusions out. The chinese doc thought that by the 1yr mark she would be transfusion free.

patti

[John in GR]

Dr. Kou, who Patti is referring to is the gentleman Cheri and I are flying out to see this coming weekend. My understanding is that Dr. Kou studied blood disorders and Chinese herbal medicine in China and has worked w other MDS patients besides Patti’s MIL. Dr. Kou apparently has a bit of a national reputation.

BTW I can function pretty normally at 8 including work and activities involving exercise. I do better at 10+.

Cheri and I are hopeful that Dr. Kou can help me with my Sweet’s Syndrome (sores) and MDS. I am on prednisone, a harmful drug to control the Sweets and have needed a total of 11 units of blood; of course I would like to avoid continuing down that path, if possible.

John

[gemloyear]

John, I wish you the best in your journey to seek a safe treatment from Dr.Kou. Keep us updated on his recommendations.It should be of interest to anyone as an alternative to chemo. Good luck,
Ellie & Glen

[gemloyear]

Patti, I’m glad that your Mil’s regimen is working so well, she is an inspiration to other older persons who don’t wish to take or can’t take chem.Wonderful that she’s doing so well.
Take care, Ellie

[Jerry]

John …

Does Dr. Kou have a website or how did you learn of him? … I support Elle in hoping that you will fill us in on the details when you return.
Thank you …

Jerry

[CarolineG]

John,

Best of luck with Dr. Kou. I will be thinking about you.

Caroline

[SRMaven]

Can anyone provide contact information on Dr.Kou please. Sounds like he would be good to see.
Thanks.

[patti]

Stephen,

Dr. Kou is a professor at the National College of Naturapathic and Chinese Medicine Clinic in Portland, Oregon. He is there at the school two days a week and also has a private practice the other three days. He does not have a website that I know of. However, the college has a website. He’s a quiet, unassuming man, who does not boast of blood disorders being his specialty other than to say he has much experience with them. Those around him do all the boasting! I find him to be incredibly knowledgeable and so far, everything he has said has been right on target. At a bare minimum, he has given us a hope that we have never had with the medical doctors. At the best, if he’s right and mom’s body holds out, maybe we’ll see her bone marrow completely healed by the end two years with him. I guess only time will tell.

patti

[John in GR]

Cheri and I will be leaving Thursday and coming back Monday. I will be most happy to share my experiences. We’re all looking for answers, aren’t we?? I am grateful to Patti for sharing w me her knowledge re Dr. Kou.

That’s how we help each other. We’re all a bunch of pilgrims.

John

[Jerry]

John ….

How did it go?

Jerry

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