Webcast on alternative treatment of MDS/AA

[Lulu]

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!

[Marlene]

Thanks for the heads up on this...

[curlygirl]

I'm looking forward to it! I'll be at work but will be sure to watch it when I get home.

[Marlene]

Did anyone watch this? I was looking for in the "archives" but couldn't find it.

[vikasgoyal]

I watched it and it was good but did not find any concrete information.

[Marlene]

Thanks for the review.

[Lulu]

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-eating/blogs/2013s-updated-dirty-dozen-produce-list

[Marlene]

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.

[Chirley]

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

[tom30]

if you select Mikhail Kogan, MD from this page the presentation is there https://live.blueskybroadcast.com/bsb/client/CL_DEFAULT.asp?Client=680927&PCAT=1016&CAT=7309

[Marlene]

Thanks Tom....I'll check it out later. How did you discover this?

[Whizbang]

Very interesting... watching it now...

[sbk007]

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.

[Marlene]

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.

[sbk007]

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.

[Marlene]

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/

[Mseth]

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.

[Lulu]

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/Warfarin-Coumadin-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.

[Mseth]

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!!

[Marlene]

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?

[Marlene]

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.

[Mseth]

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

[Marlene]

I meant to include this link on the folate:

http://mthfr.net/how-much-methylfolate-should-i-take/2012/03/22/

[Lulu]

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-Orthomolecular-Research-AOR-Series/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

[Marlene]

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.

[Lbrown]

Very interesting about the vitamin K Lulu. I suspect undiagnosed celiac and malabsorption problems in my case. I've been transfusion dependent for 4 years now and have had at least 200 units of packed red cells. Since going strictly gluten free in May of this year, my rash went away and I feel stronger. I can tell I *am* stronger because I can ride my horse better. For 10+ weeks my HGB was doing better as well. I think I got glutened by mistake around Aug 30, my next test was worse. I am hanging in there and staying on the diet, in spite of what my drs think.

It's mind boggling to think gut problems might be causing a lot of these blood disorders.

Deb

[Glenda H]

I have been looking at a few of these presentations. There was another one on Nutrition I looked at as well as the main one in this thread. I may have a look at some more which are archived.

[Lulu]

It's mind boggling to think gut problems might be causing a lot of these blood disorders

Yes, and I think it is absolutely criminal that the medical profession (mostly) dismiss the link as insignificant. I had one consultant telling me I was clutching at straws and that he would not test for "serum rhubarb" (ie whatever he thought was irrelevant). Fortunately they listen to me a bit more now, but some take the "maybe you don't really have MDS" line, which is about as logical as the old witch trials whereby if you float you are a witch and if you drown you are innocent!

Lbrown, good to hear your diet is helping. I have had several coeliac tests and they all come out negative, but I think I have an issue with Fodmaps (which includes wheat) http://en.wikipedia.org/wiki/FODMAP
http://www.ncbi.nlm.nih.gov/myncbi/browse/collection/41655527/?sort=date&direction=descending

Good to see they have put the presentations online now, I look forward to catching up!

[Mseth]

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-Orthomolecular-Research-AOR-Series/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

Hi Lulu, i lookes up Bile Acid Malabsorption and you are right, Cholecystectomy is listed as a type 3 for Bile Acid Malabsorption though my mother does not have the symptom of chronic diarrhea. Are there tests and treatments for this specific condition?
Does this condition affect Vit K2 absorption or other nutrients too?
Any specific reason for moving from Thorne liquid K2 to the capsule form? Thanks in advance for your answers.

[Lulu]

Hi Mseth, the test for bile acid malabsorption is called a Sehcat test. http://en.wikipedia.org/wiki/SeHCAT
I have heard it is not available in the US, I don't know if this is still the case.

BAM particularly affects the fat soluble vitamins (A,D,E,K) and possibly others but K is apparently particularly vulnerable as it is usually not as abundant in the diet.

The treatment for BAM is bile acid sequestrants, drugs that bind to the bile acids and slow digestive transit. This can stop the diarhoea but does not treat the vitamin deficiency as it binds the vitamins also. I have since read that Psyllium and slippery elm do a similar job. Nobody seems to know what the root cause is, but my problems started after a stomach bug about 20 years ago.

I moved from the Thorne drops to the capsules as it was cheaper!

[Mseth]

Hi Mseth, the test for bile acid malabsorption is called a Sehcat test. http://en.wikipedia.org/wiki/SeHCAT
I have heard it is not available in the US, I don't know if this is still the case.

BAM particularly affects the fat soluble vitamins (A,D,E,K) and possibly others but K is apparently particularly vulnerable as it is usually not as abundant in the diet.

The treatment for BAM is bile acid sequestrants, drugs that bind to the bile acids and slow digestive transit. This can stop the diarhoea but does not treat the vitamin deficiency as it binds the vitamins also. I have since read that Psyllium and slippery elm do a similar job. Nobody seems to know what the root cause is, but my problems started after a stomach bug about 20 years ago.

I moved from the Thorne drops to the capsules as it was cheaper!

Thanks Lulu for the information. Dont know if this test will be available in India.
Moving to capsules is definitely a good decision, we pay customs duty to import it into India, over and above the online cost of $62!! I am just hoping and keeping fingers crossed that it can help raise her Hb a liitle bit at least. Currently Hb drops by 2 - 2.5 points in 4 weeks, even a longer transfusion interval will be such a relief.
Thanks for all your help!!

[curlygirl]

Lulu, by pure coincidence I was Science Daily today and came across this article on IBS, interleuken 10, and Lymphoma today and thought of your posts on this thread.
http://www.sciencedaily.com/releases/2013/10/131002103313.htm

"Genetic Anti-Inflammatory Defect Predisposes Children to Lymphoma"

[Chirley]

I'm sorry if this isn't relevant because I'll admit I haven't read the posts thoroughly or the articles but the main excretion pathway for copper is in bile. (In my case urine, but what the heck, I'm abnormal, what can I say!).

[Lbrown]

Chirley - I think we're all abnormal around here!

Thanks for posting about FODMAPs. I think my husband was talking about that just the other day, except he wasn't making a lot of sense. I will look into it more.

BTW, copper deficiency is mentioned in this article from Blood: http://bloodjournal.hematologylibrary.org/content/109/2/412.full?sid=606a9bbd-0903-4783-a75d-448bb8e8572c#aff-1

Also, I have read that the celiac tests aren't necessarily all that accurate. I refused the test due to having to go back to eating gluten again - no way. I was not willing to make myself sicker than I already am in order to test positive for celiac.

I got some gluten by accident on Aug 30th and it's taken 4 - 5 weeks for my counts to improve. This fits with my observations in April when I binged on pizza for a week, and had a huge drop that took about a month to recover from. In Sept I had a large drop in HGB, then an average one, now a less than average one. I had just over 10 weeks this summer with less than average drops as well, after going strictly gluten free on May 25. The only supplement I take is B12

Deb