RCMD RBC Anemia improvement

[patti]

Jim,

A couple of things for you to consider with treating the MDS naturally. First, if mom and I could do anything over again it would be NOT waiting to find a good cancer naturapath. Mom was taking as many supplements (or more – she was on 50+ pills a day) during the year that we flew by the seat of our pants, so to speak. I’d research and she’d start taking stuff. One of the things the ND did was really cut WAY back on what mom was to taking to the stuff that was actually working (because she knew what would and wouldn’t work from experience). She also explained that too many supplements (especially in pill/capsule form) are not good for the digestive system and can actually be detrimental. So I would REALLY encourage you to find an ND to guide you. If you need a way to find a cancer ND let me know. I can post a website that can help you. I wish you could see mom’s! She’s so good! In case you’re interested, she does phone consults.

Second, if your only abonormal cell line is reds – from the very beginning mom’s chinese doc has said that red cells are easy to fix, white cells a little harder and platelets take years. It took 8 months for him to get mom’s lowest HGB to be 8. No matter how low her HCT goes her HGB stays at 8. The next thing he said we’d see would be her HCT would go up and stay stable. Meaning her red cells would be fixed. That is likely to take another year by his timetable. So far, everything he has told us has happened within the timetable he gave us. Unfortunately for us, all three of mom’s cells lines are affected and it’s likely her body will give out from iron overload before Dr.Kou is successful with the HCT, whites and platelets. Nonetheless, he has succeeded so far with the reds. Since you are interested in natural medicine I would highly encourage you to try chinese medicine. Mainly mom uses acupuncture and herbal teas that she drinks 3 times a day. Again, let me know if you’d like a name and I can find you one.

Glad to hear the natural stuff is keeping you feeling well! I know mom’s quality of life has been really good since doing the natural stuff. Time – we need more time! Don’t lose any time waiting…. it’s not worth it!

Keep at it!

patti

[jga_socal]

Hi all. This is an update on the topic.
My Hgb finally went down to a level I havent seen since last september, 8.9. Then again, I was able to skip a transfusion 5 weeks ago so I shouldnt complain. Stretching my transfusion frequency to 10 weeks from 5 I can live with. I’m still taking the same supplements at the same levels. So, who knows why I’ve had such fluctuations? In discussions with my Doc, he has been unconcerned about my ferritin levels, even after i’ve had 23 pints over the last year. He says you have to get a lot more transfused blood before ferritin levels get dangerous. However, he ordered a ferritin test just to keep me happy. The test came back yesterday at 2743 ng/ml. Normal range is 22-322 according to the read-out. The nurse said she would ask him about the result tomorrow. Does anyone know much about what levels ferritin becomes dangerous? I heard exjade is very expensive.
Thanx,
Jim

[covergirl]

Hi JGA,
Stay on your dr. about those ferratin levels. Once they get up there, it’s hard to get rid of if you are still having transfusions. I’m no doctor, but my level is not as high as yours(if measurement units are the same) and I’ve been on a chelation treatment(either exjade or desferal) for over a year.

Additionally, I would watch an “unconcern” from your doctor. MDS is too fickle to be unconcerned!

Good Luck and hope you continue to do fairly well.
–cheryl

[patti]

Jim,

I think age is a real factor with ferritin levels and the damage it causes. From what I’ve read and working with mom’s doctor, the real young and the elderly tend to suffer damage much faster from the iron overload. My MIL is 76 and has experienced quite a bit of liver and kidney damage from the iron even when her levels were “only” 1500. She is now at 3500. We stopped the Exjade and have decided the let the iron overload go for now because there are other more pressing issues and she is clearly at the end of this disease. That said, when she was taking the Exjade it worked very well and very quickly at very low doses. She never took more then 500mg a day and even being transfused every two weeks was still dropping 250 a month. It is extremely expensive. She has a decent medicare plan that cover most of the cost. The Exjade did drop her white cell count (she couldn’t afford to lose even one) so you would want to watch for that if you take it.

Are you juicing at all? If not, you might consider juicing greens and beets at least once a day (but two or three times is better). Juicing is excellent for holding those counts up. Especially the beets for reds.

To juice greens you can simply juice romaine lettuce, any green lettuces (except iceberg!), throw in a carrot and an apple. Juice and drink right away. Always use organic if you can.

For beets: Juice one organic beet, organic lemon, one organic cucumber. Mix with 1 tbls olive oil. Drink right away.

Doing both of these things will help your counts improve.

Patti

[jga_socal]

Covergirl and Pattie,
Thanx for the posts. I am going to get a second op from another doctor at City of Hope in Duarte about the Ferritin. I saw her last July and she suggested I wait a year or 2 for a SCT. So far hers was good advice. And i’ll check out the juicing.

My Dad (87 years old and doing great) started living with me in January so I started drinking a beer or 2 daily with him in Jan and up to my last CBC. So… now I’m on the wagon to see if the alcohol factors in to my last poor RBC count.
Maybe the RBCs that my marrow make are very ‘delicate’ and killed by alcohol? Who knows. The beer is the only thing I can think of that is diff. Prior to Jan I hadnt bought beer since the summer. I may have had a glass at a restaurant every now and then.

[chuckk333]

Jim,

I have been juicing for several months now. 1/2 pinapple + carrots in the AM and leafy greens in the afternoon. In spite of complex chromosome abnormalities, my wbc and platelts have held there own or improved. My RBC is still in the low part of normal so I am feeling good and continue to ski 3 or 4 days a week.

Chuck

[patti]

Chuck,

I am so excited to hear of the success your having with juicing! I really believe that God has given us everything we need to heal our bodies. It’s just most of us are too impatient to do it and wait for the results! But for now, how fantastic that you feel well. I know that my MIL really felt well until just this past few months. I attribute a lot of that to her juicing.

Take care,

patti

[franb rars dx 12/06 age 57]

Thank you for the info Jim, wish you continued results.

Fran B

[Author]

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