curcumin and CoQ10
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February 5, 2007 at 5:19 am #17033ZoeMember
I have seen research for using both curcumin and CoQ10 in MDS. Since apoptosis is a large part of counts dropping particularly in the early stages of MDS, and these substances seem to increase apoptosis, I wondered if it was only to be used later. Although the research I read seemed to indicate it was for any stage. I did try them though and within just a couple weeks my hemoglobin and white counts dropped to their lowest ever for me. I felt so terrible I did not take them for several days. Friday I was pretty non-functioning, went to bed early, slept 12.5 hours and felt great when I woke up. I went in for blood work, a shot of aranesp and a possible transfusion only to find that my hemoglobin had gone up. My whites are still trending down.
I have to wonder if quitting the CoQ10 and curcumin helped my hemoglobin go back up. Does anyone know of any research which shows if these should be used only for later stage MDS? Other thoughts on if maybe this was just coincidence, or was timing wrong, or if this is just a reaction some people have?
I would love to find a good naturalpath to work with, but don’t know of any in this area. I am in Southeastern Ohio. Anyone know of one? I hate trying to figure this out on my own.
February 5, 2007 at 6:55 am #17034pattiMemberZoe,
Curcumin is a natural “cancer killer” and CoQ10 is a cell energizer at the molecular level. I’m not exactly sure what happened with you taking them. Could have been coincidence, could have been your body just doesn’t like the two together. If you’re brave enough to experiment, you could try taking one or the other by itself for a month and see what happens to your counts. Then switch. If you do this it will give you a good idea of what is happening. I know both are good for the body but as with all things natural, not everything works for everyone.
I would second you finding a good naturapath! Ours has done mom so much good in giving guidance and direction. I was only able to find one name in Ohio. You could try this guy or call him and ask him if he knows of any ND’s in your area that are cancer specialists. That’s the one thing I would emphasize is that it’s important to find someone who has experience in dealing with any cancer patients. Doesn’t need to be MDS. I’ve just found that family ND’s are not up to the challenge that MDS presents but cancer ND’s are. Because the basis of cancers are basically the same on a natural scale.
Here’s the guy’s info:
Erin Holston, ND
Biotherapeutic Drainage, Gastrointestinal Disorders, General Naturopathic Medicine, Nutrition, Hydrotherapy, Food Sensitivities, Classical Homeopathy, Drainage Homeopathy, Auricular Medicine
2460 Fairmount Blvd., Ste. 219
Cleveland Heights, OH 44106
Phone: (216) 707-9137
email: eholston@email.msn.comHe doesn’t necessarily look like a cancer guy but he might know one in your area.
Hope this helps.
patti
February 5, 2007 at 2:21 pm #17035Russ P.MemberZoe, If you go to the UMass web site you will find that Dr. Raza has run trials with Co Q10. Also trials are indicated for curcumin. I have taken Co Q10 (200mg/day) mainly for help with the liver when on the statin drugs for high cholesterol. Have continued since some of the chemo is also hard on the liver. Took curcumin along with gingerol for awhile but had a hematoma in my knee which I relate to these spices. The labels caution about stopping them before any surgery because of bleeding so this caution should apply when low platelets are involved.
February 6, 2007 at 5:16 pm #17036ZoeMemberThanks for the responses. I did read at the UMass website among others. Makes me wish I lived in Mass :^) I think I am going to try staying off everything for a couple of weeks and slowly re-introduce things one at a time for a month each.
Zoe
February 7, 2007 at 3:13 am #17037SimonChaiMemberZoe: Could you afford to see Dr. Raza even though you’re in Ohio? I know she takes out-of-state patients as I considered seeing her once and I live in DC.
Simon C.
February 7, 2007 at 3:35 am #17038J.claireMemberI live about 45 minutes from Dr. Raza and Umass Medical and you could stay with me (unless you are allergic to cats and dogs, as I have two of each). I have extra beds because of kids in college and I would love to be of help to anyone who needed it. You could also borrow my car or I could take a day off from work and drive you there.
February 7, 2007 at 4:05 am #17039ZoeMemberJ.claire, I am so touched by your offer! I would love to take you up on it, however, I’m afraid I have a houseful of girls (I do foster care), and 3 dogs myself. I work only very part time and have no other income. I get the bills paid, have some blow dough to do things with the girls, have an occassional splurge on myself, and that is about it. My medical bills are increasing dramatically. I am not sure how I am even going to stay on top of them. So, Simon, no, I am afraid I could not afford to see Dr. Raza. Patti, I copied the info about the dr up north in Ohio you provided-thank you! I will e-mail him to see if he knows anyone this way.
Thank you all for your support. It really is touching. It means all the more coming from people who are also dealing with this. I was talking to a friend last week and I shared how tired I was. She responded by telling me she knew what I meant. She then listed all the things she had been doing to support how tired she was. I felt so jealous because I was just as tired, but I had really not done anything except for the bare necessities–and even those were really not done well. I know you all live with this either directly or because of a close family member. You have walked where I walk, and you take the time to share. Thank you.
On the up side, since Friday’s sleep marathon, I had another 10 hours of sleep Saturday night. I am continuing to feel better and stronger. I even have the energy to laugh again (for a while there I felt so bad that it seemed all my energy went into just functioning, there was nothing left over to enjoy life). Maybe I just pushed too hard and needed to hibernate a while. The Aranesp can’t be hurting either :^)
Zoe
February 8, 2007 at 11:59 pm #17040chuckk333MemberI travelled to Umass in Aug 2006 to see if I could get on the Dr. Raza study on the combination of circumin/gingerol. After seeing the result of another bone marrow biopsy at Umass, she recommended that for me she would recommend Vidaza for me. She did not recomend that I get on her study of CoQ10 since I have a history of atrial fibulation. If the Vidaza worked and I achieved “remission” she would then recommend that I go on the “natural” treatment, ie, one of her studies. I would suggest that you email her, telling the details of your own trial with the 2 spices. She might respond. She did for me several times.
By the way, I took the advise of some other experts on MDS, and since I am feeling well, wait until some adverse changes accur and then consider Vidaza. Since I am still feeling well and since I monitor my counts ever 3 or 4 weeks, I am doing what I do every winter–live in CO and ski 3 to 5 days a week and continue my normal life. -
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