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Alternative Treatments Complementary and alternative medicine; natural and holistic approaches

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  #1  
Old Thu Aug 22, 2013, 04:56 PM
Lulu Lulu is offline
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Webcast on alternative treatment of MDS/AA

This looks very interesting:
"Managing Bone Marrow Failure Disease with Complementary and Alternative Medicine and Integrative Medicine"

Curious about managing disease with complementary and alternative or integrative medicine? Join a live webcast on September 7 with George Washington University expert Dr. Mikhail Kogan. http://bit.ly/CAMwebcast

Really looking forward to this, it is good to see alternative approaches making the mainstream!
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  #2  
Old Fri Aug 23, 2013, 08:53 AM
Marlene Marlene is offline
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Thanks for the heads up on this...
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #3  
Old Fri Aug 23, 2013, 11:34 AM
curlygirl curlygirl is offline
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I'm looking forward to it! I'll be at work but will be sure to watch it when I get home.
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  #4  
Old Thu Sep 19, 2013, 10:49 AM
Marlene Marlene is offline
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Did anyone watch this? I was looking for in the "archives" but couldn't find it.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #5  
Old Thu Sep 19, 2013, 01:21 PM
vikasgoyal vikasgoyal is offline
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I watched it and it was good but did not find any concrete information.
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Father 72, diagnosed MDS RCMD June 2011. HGB 5.5, WBC 7.2, Plt 400 Cytogenetics Normal. Blast cell count 2% ( July 2012 ). Currently on Danazol, Ferritin 750
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  #6  
Old Thu Sep 19, 2013, 02:25 PM
Marlene Marlene is offline
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Thanks for the review.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #7  
Old Thu Sep 19, 2013, 03:27 PM
Lulu Lulu is offline
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I watched the last presentation from Mikhael Kogan about alternative treatments, but was out earlier so missed most of the rest. Was hoping the earlier presentations would be available online but I cannot find them.

It was very interesting - he mentioned curcumin, green tea, K2, boswellia and intravenous vitamin C (among other things) as being of interest and discussed antagonisms between vitamin K and D, and the drawbacks of certain treatments like IV vitamin C, and the dangers of bad quality vitamins especially individual synthetic antioxidants. He also emphasised the importance of treating the free radical damage caused by iron overload.

Interestingly he hinted that there was research being undertaken into Ketogenic diets (a kind of 'watch this space'), and the MTHFR gene (which I still do not understand completely!)

He emphasised the importance of organic food especially anything that is juiced as it is concentrating the toxins, and avoiding the 'dirty dozen' veggies which have high pesticide residues http://www.mnn.com/food/healthy-eati...n-produce-list
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  #8  
Old Thu Sep 19, 2013, 04:07 PM
Marlene Marlene is offline
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Thanks Lulu. Hopefully, at some point, they will have the session online.

I think the MTHFR mutation probably plays a bigger role in this disease. But' it's pretty new and not looked at by many as a possible contributing factor.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #9  
Old Thu Sep 19, 2013, 09:02 PM
Chirley Chirley is offline
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Hi, I have the MTHFR mutation (homozygous) and I'm convinced it has something to do with my copper metabolism disorder and MDS as well.

I talked to the Prof of Metabolic Medicine I used to see and he dismissed any relationship but I've been suspicious it was linked to MDS even before I knew about my copper problem. If you look at the copper metabolism pathway and the methyltetrahydrofolate pathway they have some cross links.

I wish I was a bit more intelligent so I could grasp some of these concepts.

Chirley
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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  #10  
Old Sat Sep 28, 2013, 12:34 AM
tom30 tom30 is offline
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if you select Mikhail Kogan, MD from this page the presentation is there https://live.blueskybroadcast.com/bs...=1016&CAT=7309
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Tom- 62 yrs old, dx-eosinophilic fasciitis 2004, 1 yr prednisone resolves EF- now low counts, HGB has been ok... EF has been associated with MDS along with AA.
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  #11  
Old Sat Sep 28, 2013, 11:32 AM
Marlene Marlene is offline
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Thanks Tom....I'll check it out later. How did you discover this?
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #12  
Old Sat Sep 28, 2013, 03:52 PM
Whizbang Whizbang is offline
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Very interesting... watching it now...
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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  #13  
Old Sat Sep 28, 2013, 10:38 PM
sbk007 sbk007 is offline
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Weird

It is interesting. I would of liked to hear what
kind of results he gets with his bone marrow failure patients.
Like how do people respond with vitamin k2 he seems to like.
I know he showed a nice paper that describes DNA methylation but
when he treats patients with k2 & D what does he see?
He sited some trials but I came away confused.
He uses this stuff, he has patients but are they living longer, or
have better blood counts? I didn't get that.
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  #14  
Old Sun Sep 29, 2013, 10:15 AM
Marlene Marlene is offline
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In the short amount of time he had, I think he was trying to highlight some of the more effective integrated treatments. And if you're thinking of doing some type of CAM approach, these are going to be the ones to try based on the research.

From what I could tell, he believes that improving your general health is necessary instead of just focusing on the diagnosis. Regarding the vitamin D/K2...Correcting this is important in that most of us are deficient in these and are involved in so many aspects of our health. Same for the Folate/B12. They are not well know or understood by doctors yet.

Based on what I've read, pretty much everyone needs to include K2 with their Vit D3.

It would have been helpful to hear some case studies on how he's treated patients with bone marrow failure and the outcomes. But I don't think he had the time.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #15  
Old Sun Sep 29, 2013, 04:54 PM
sbk007 sbk007 is offline
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Quote:
Originally Posted by Marlene View Post
In the short amount of time he had, I think he was trying to highlight some of the more effective integrated treatments. And if you're thinking of doing some type of CAM approach, these are going to be the ones to try based on the research.

From what I could tell, he believes that improving your general health is necessary instead of just focusing on the diagnosis. Regarding the vitamin D/K2...Correcting this is important in that most of us are deficient in these and are involved in so many aspects of our health. Same for the Folate/B12. They are not well know or understood by doctors yet.

Based on what I've read, pretty much everyone needs to include K2 with their Vit D3.

It would have been helpful to hear some case studies on how he's treated patients with bone marrow failure and the outcomes. But I don't think he had the time.
Marlene, Where can you get the real b-12,Folate and K2 and D3? His opening line was don't buy from CVS(Retail pharmacies). He didn't like the mushrooms either. When I look online its hard for me to tell who I should buy from or how I know its the good stuff. I wasn't sure if he was talking about multivitamins or vitamins in general but same difference..
Thanks.
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  #16  
Old Sun Sep 29, 2013, 08:11 PM
Marlene Marlene is offline
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I saw that he uses the Thorne curcumin called meriva. My ob/gyn suggested I try this for a shoulder issue I have. I tried some other brand along time ago but it gave me heartburn and was not excited to try Thorne's. But Thorne's did not cause any problems. So that's a good thing. http://www.thorne.com/articles/meriva.jsp

Thorne is very reputable and in the past was only available to practitioners. But now you can get it online from iherb.com. Thorne has a few different combinations of the B vitamins. There's one called methyl guard plus that has the folate and B12.

We use Thorne, Life Extension and Jarrow (and some others).

The one thing I caught, and I need to research further, is finding the adequate dose of folate. Sounds like it varies by individual. I need to check out this site on MTFHR and see if I can find something about it: http://mthfr.net/
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #17  
Old Mon Sep 30, 2013, 01:37 PM
Mseth Mseth is offline
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Hi all,

Interesting to watch & hear. I had read about Vitamin K2/D3 combination therapy earlier, now giving it a try. I have got Vitamin K2 from Thorne Research, through iherb.com. Also the curcumin my mother is using is Meriva from Thorne Research. Glad both products were referrred to in the presentation. She has been tolerating the curcumin well, K2 has just been started@ 5 mg X 3 times/day. Will build this up gradually to the 15 mg X 3 times/day dose. Its a tasteless liquid and easy to take.

Yet need to understand the MTFHR issue. Is the Folate level in the blood, sufficient to determine a deficiency or are there other tests? My mothers Folate is in high normal range, last tested, few months back. Any advice will be appreciated.

Thanks.
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Mother age 79, dx MDS RCMD low risk del 20q April 2013, no response to EPO, Danazol. pRBC tx dependent - 2 units every 3-4 weeks, exjade Dec 2013 - Mar2014, restarted Dec 2014
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  #18  
Old Mon Sep 30, 2013, 02:19 PM
Lulu Lulu is offline
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K2

I am one of the lucky people who has responded dramatically to vitamin K.

When I was v ill in desperation I googled "myelodysplasia+vitamin" to see what would come up as suggestions, and found various Japanese clinical trials.

I have had gut problems for years and was recently diagnosed with a condition called Bile Acid Malabsorption (which took much hassling to get them to test for). This causes loss of fat soluble vitamins especially vitamin K.

Interestingly, as someone with a pre-existing malabsorption condition I would not have been eligible for any of the Japanese trials into vitamin K and MDS. I suspect that a if they ran those trials again with their excluded patients they would have had even more significant results.

I am saving up to do this test https://www.23andme.com/health/Warfa...in-Sensitivity
Some people have mutations on the VKORC1 gene which affects their ability to utilise vitamin K. At present this is only used to check how much warfarin (coumadin) to give people, but I wonder if this test might help weed out MDS patients who might benefit from extra vitamin K.

I would not be surprised if mutations on the VKORCI gene + small bowel malabsorption = "idiopathic" MDS.
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  #19  
Old Mon Sep 30, 2013, 03:23 PM
Mseth Mseth is offline
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K2/D3

Hi Lulu,

Great to read that you have done so well on K2. You give me hope!! Were you getting RBC transfusions prior to taking K2? Do you take the recommended 45 mg with/without D3?

My understanding on malabsorption and the gene you mention is unfortunately almost negligible. My mother has had her Gall bladder removed many years back, other than that she has a weak digestive system and major GI problems with diff types of food(specifically sour foods like tomatoes/lemon etc) and 'ALL' types of medicines. She even considers these supplements & vitamins as medicines and is a believer in natural foods.

She also takes probiotic (Biocare powder) for the last 8 weeks or so. Hope that will be of benefit.

Wish you continued good health!!
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Mother age 79, dx MDS RCMD low risk del 20q April 2013, no response to EPO, Danazol. pRBC tx dependent - 2 units every 3-4 weeks, exjade Dec 2013 - Mar2014, restarted Dec 2014
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  #20  
Old Mon Sep 30, 2013, 03:27 PM
Marlene Marlene is offline
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Mseth.....From what I can tell, the standard folate test is not adequate to assess folate. Sometimes, a high normal can indicate that it's not being utilized by the body. It's very confusing, even to the professionals. Spend some time on the mthfr.net site I referenced earlier. This article on the site gives you an idea of the dosing and how complex it can get.

I hope the D/K2 helps. How much D is she taking?
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #21  
Old Mon Sep 30, 2013, 03:30 PM
Marlene Marlene is offline
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Lulu... Glad you're having good success with the D3/K2 combo. How much of the two do you take? And how long did it take to see results?

I've often thought about doing 23andme but have yet to take the plunge. I wonder how well they translate the results so a layperson can make sense of it.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #22  
Old Mon Sep 30, 2013, 03:41 PM
Mseth Mseth is offline
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Folate

Hi Marlene, thanks for responding.

My mother has a vegan diet, yet her B12 has always shown normal(low normal) and folate a mid to high normal. The B12 values always surprised me since she takes no known source of B12. After MDS dx, she has started taking B12 supplement, even though her doctor did not think she needed it. I will go thru the link you have recommended.
D3- She started with a weekly dose of D3 - 60,000 IU for 8 weeks, after 4 weeks her levels went up from a 15(below normal) to 37(normal range 25 - 100 i think). After 8 weekly doses, she now takes the same dose fortnightly. Its a 1 gm sachet, of Cholecalciferol.Have not had it retested beyond 4 weeks, its an expensive test and we have no insurance in India. Every test/treatment is self funded.
The presentation and the Japanese study mention 0.750 mcg/day. In what form can D3 be taken at this dose? I need to figure this out.

Thanks
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Mother age 79, dx MDS RCMD low risk del 20q April 2013, no response to EPO, Danazol. pRBC tx dependent - 2 units every 3-4 weeks, exjade Dec 2013 - Mar2014, restarted Dec 2014
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  #23  
Old Mon Sep 30, 2013, 05:19 PM
Marlene Marlene is offline
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I meant to include this link on the folate:

http://mthfr.net/how-much-methylfola...ke/2012/03/22/
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #24  
Old Mon Sep 30, 2013, 06:42 PM
Lulu Lulu is offline
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Hi Mseth, Marlene

Yes I was reliant on transfusions for a year or so, Hg was down to 6.7 when diagnosed. I'd say my MDS is mild as in it used to go down 1-2 points a month rather than each week, and cytogenetics are normal.

I started v cautiously with the Thorne K2 drops and am now on these at 45mg daily http://www.amazon.com/Advanced-Ortho.../dp/B00457KVBM
I think it took about 4 weeks for my blood count to improve slightly, and I relapsed when I stopped taking it so I must have a higher than normal need for it.

I also take vit D3 in the winter (3000iu spray), and 1mg B12 (methylcobalamin form), emulsified vitamin A (in small doses), shark liver oil, probiotics, magnesium, and wheatgrass. Diet-wise, I avoid gluten, cows milk and beans as much as possible, as these aggravate. I used to be almost vegan, but have found that I do better on a more paleo-style diet.

Mseth - from what I understand about gallbladder removal this can cause severe Bile Acid Malabsorption, so there may well be a link here.

Good luck everyone! x
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Old Tue Oct 1, 2013, 08:57 AM
Marlene Marlene is offline
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Thanks Lulu. That's good info to know about your response. We too had a mostly vegetarian life style. We both do better with eating meat though. I could not believe how much stronger I felt.

We take v D3 all year round. We are not out in the sun enough and too far north to really get adequate exposure.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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