[Jerry]

Thanks Jack,

I have ordered them, but my Cleveland Clinic Dr’s want me to take copper pills because my copper level is a bit low and they have seen that as causitive for this disease. Soooo, I will take the copper for a while to see if it does any good and then, if not, I will introduce the Noni. I don’t want to start them at the same time because I won’t know which is helping me. When I told Debbie that I had to buy copper pills, she said I could save money and help the country by eating pennies!! I see you are from Iowa. Are you an Iowa Hawkeyes fan? I hope you understand when I say, “Go Bucks”. Thanks again.

Jerry

[Jerry]

Linda,

I was just at Cleveland Clinic last week. Who are you going to see? I saw Dr. Maciejewski and Dr. Haddad. I was VERY impressed with them and they have already called me with some preliminary results of my blood work. They said they will call when they get the rest of the results. I hope you have the same positive experience. Good luck!!

Jerry

[Jerry]

Hi Jody,

I took Jack’s advice and bought them online from Noni Maui. They said I would have to go to Hawaii to pick them up … so I’m packin’ right now. Actually, they will come in 2 days via FedEx or Brown. (Can’t remember which.) But in Feb ’06, Debbie and I are going to Hawaii and I plan on looking into them just a bit more. Then maybe I can write off the trip. (Don’t I wish !!!) And finally, with my hearing these days, I could really use another ear. Debbie gets tired of my “huh’s”. Anyway, good luck to you.

Jerry

[Jerry]

Hey Jack,

I just spent the dog food money and bought some Noni capsules. I see that you take one in the morning and one in the evening. How long after you started taking them did you see results? It makes me a little nervous to take something like this, so please be honest. You did not grow a second nose or a third eye did you? Ha Ha, just kidding! Thanks for your input.

Jerry

[Jerry]

Caroline,

I am really out of my league here, but has your Dad explored the option of having his kidney stones zapped by ultrasound? I have not had it done, but I have heard of it and it is not invasive at all. Just a thought.

Jerry

[Jerry]

Warren,

Take a deep breath and try to relax. I am fairly new to this forum but I can tell you there are some very knowledgable people on here. Most of us have (or had) the same fears and lack of knowledge that you have. For myself, I just had an appointment at Cleveland Clinic yesterday and my doctor told me how good Dr. List and the group at Moffit are. So that is a big postive for you. My suggestion is to take some time and read previous posts here and to follow the links on the home page here: https://www.mds-foundation.org/ and then go to the Moffit site and see what you can learn. If a BMT is in your future, it could be very positive for you. For me, I am too old (61) and with my kidney disease, I would not survive it. So it is not even a consideration for me. So, I try to live each and every day to the fullest and enjoy my friends and family. I fully intend to be here 10 years from now to irritate them all. A final but important thought. New medicines and treatments are being discovered and tried almost monthly in the MDS world. So, as Jim Valvano said, “Never give up, never, ever give up”. Good luck to you.

[Jerry]

Terri,

Have you ever looked into giving Bob his Procrit shots yourself? Debbie gives me mine and we can store a month’s supply in the refrigerator. Of course, if the power is out and we had no ice, we would be in a world of hurt! On the other hand, when she gives me the shot after dulling the needle (I swear she does!) it is a world of hurt anyway. Good luck down there in Florida.

[Jerry]

Thanks Jack !! I think I have BMBB … Bone Marrow Being Bad … I go to Cleveland Clinic tomorrow. Maybe I will recommend a whole new set of classifications to them for this stuff. Then, they will send me to the mental ward. Keep your sense of humor. It does you and us a great deal of good.

[Jerry]

Jack,

I have the same question that Jody does. I looked Noni capsules up online and found several sources for them. My experience with health foods has been that they are almost always much less expensive online. However, each of these sources claims to “be the best and the original” etc. My question is who you get them from and if you are happy with the service? Thanks so much.

Jerry

[Jerry]

OMG Terri !!!!! Don’t forget the beer. LOL. Good luck …

[Jerry]

JulieMarie,

I will look forward to it. I am from the Columbus area and will get a lot of The Cleveland Clinic in the next couple of weeks. I have an appt with Dr. Maciejewski on the 26th. So, by mid November, I should know a lot more about this disease.

[Jerry]

Does pinapple juice bought in a jar work? Or, do you need to juice a “fresh” pineapple?

[Jerry]

Thanks for all the suggestions. We have a humidifier on our furnace, but I think I will add a portable to the bedroom. Have a great day.

[Jerry]

Marie …

I am fairly new here but it was with a very heavy heart that I read your post this morning. Please know that people that you do not even know have you in our prayers today. My heart goes out to you and your family. God Bless.

[Jerry]

Lynne,
You are getting some very conflicting information her and I am sorry if I have contributed to that. I am 61 and have received my Procrit shots for over a year. ALL of the nurses that we have talked to have told us 1) insert the needle quickly and 2) let it warm to room temperature (about 20 minutes and/or you can roll the syringe between your hands for a minute) since it is a thick medicine and flows more smoothly at warmer temps. The advice to let the fluid go in more slowly is good advice but not for the needle. Our pharmacy provides us with pre-filled syringes with extremely short needles and alcohol swabs. We have never put the shots in my stomach or thigh because the arm is very tolerable for me. I hope this helps you, but if your are confused, speak to the nurse at your Dr’s office. By the way, my wife learned to give me my shots. (I always kid her about dulling the needle before she injects me… LOL) Good luck.

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