anybody tried alternative treatment post-BMT?

[mkogel]

Hi All,

My daughter had stem cell transplant in September 2005 for her relapsed-AML condition. Until 4 months after BMT she showed very little GVHD which was considered to be desirable. At 4th month she had a very bad infection (not know what though) which seemed to trigger a heavy GVHD. Doctors cannot however confirm that, whether the fighting with the infection triggered the GVDH or vice versa. My own theory is the first.

Since then the GVDH turned into chronic and my daughter (12yrs old) has suffered from skin reactions. Luckily her Liver and other organs were ok. But the reactions on skin took different forms. This accompanied with temperature and infections. The found urinal infections, skin bugs etc.

All these made me strongly believe that since she is immune suppressed with cyclosporine, body tries to fight against infections but the new cells attack the skin as well.

What made me annoyed also that each time she developed a temperature she was under antibiotic protocol (5 days of standard antibiotic treatment). This repeated so many times and I think it did not give body a chance to recover properly. And, in many occasions they could not grow anything in the blood cultures.

She was given anti-body treatment to deplete the B-cells to fight against the prolonged chronic GVHD. Doctors found little improvement so far. We are still observing.

I am not a medical expert (have a PHD in chemical eng) but I have learned to read my daughter over the course of her treatment. I can read the signs much better than anybody. I know very well when to call a doctor and when not. Doctors also trust my judgments and allow me on varying her steroids levels etc. within the given limits.

Recently however, I have developed a belief that modern medicine has done everything that was possible for my daughter. I now seek alternatives.

I am asking if there is anyone out there who tried any alternative approach for a similar case. I'll be happy to listen.

[danielst]

My son Gabriel had AA around 4 years ago. He was cured with homeopatichs treatment and food diet. We reject all kind of industrialized drugs after our trip to NIH-Maryland-Bethesda, because the way gave to him, was BMT with less than 50% rate succes.-

My wife get THE MIRACLE. He took the decision to follow only homeopatichs and diet food, and she cured Gabriel.-

I am not online all time on this forum. If somebody need our help, please email me to dstrasberg@cponline.org.ar

Thanks

[glitterandlace]

I am currently emailing with someone who cured her own AA with the raw food diet. There are like 4 other people besides her who have cured AA through diet. I am currently trying to do so myself. The doctors told me I had less than 6 months to live if I refused treatment. It's been 8 months... it's an uphill battle but I am still here!

[tutuAA]

Originally Posted by glitterandlace

I am currently emailing with someone who cured her own AA with the raw food diet. There are like 4 other people besides her who have cured AA through diet. I am currently trying to do so myself. The doctors told me I had less than 6 months to live if I refused treatment. It's been 8 months... it's an uphill battle but I am still here!

Do you ever try chinese herbs like blood well and blood tonic? I know Peter Lim had use blood well and blood tonic and shark liver oil to cure his son with SAA. I'm wondering if anyone else out there has been cured by these chinese herbs. You may search for fibogann (user name on the forums) for his posts.

[glitterandlace]

No I have not tried because the person i am talking to tried Chinese herbs unsuccessfully and I highly value her opinion. Those scare me anyways.....=-0

Originally Posted by tutuAA

Do you ever try chinese herbs like blood well and blood tonic? I know Peter Lim had use blood well and blood tonic and shark liver oil to cure his son with SAA. I'm wondering if anyone else out there has been cured by these chinese herbs. You may search for fibogann (user name on the forums) for his posts.

[Cheryl C]

The Chinese haematologist who does my BMBs advised me not to use chinese medicine because it can be contaminated.

[Robi1Knobi]

I tried this product for 4 mos, and it didn't work for me. It takes 4 mos for your body to make new RBC's, so that's why I bought that much. I do have a TERC mutation, so don't know if that made a difference. I have also tried Chinese herbs by my accupunturist, but I don't know if they worked either, because nothing changed & my blood levels didn't go up. The only thing that I've tried that has consistently helped me is Juice Plus. Its had world-wide double-blind, placebo-controlled studies on it. It doesn't raise my blood levels either, but has kept me from getting sick, even when surrounded by sick people )

[starhope]

We found a mineral and vitamin formula that uses all the natural building blocks the body is made of. It literately is helping my wife rebuild her body from the inside out. The guy who created it has years of research into hundreds of major diseases. He helps people get off of transplant lists and out of wheelchairs. Sounds hokie I know, but he kept my wife off the bone marrow transplant list and all her counts are returning to normal. It's slow, but is definitely working. If you want to see more of her story, you can look at my Facebook page, or see it on the website MAKE ME STRONGER, under the title OUR RECOVERY FROM APLASTIC ANEMIA. If you want me to tell you more about it, my e-mail is 35dbantique@gmail.com.
Thank you and God bless all of those that suffer.
Travis Julius

[Lulu]

Hi Travis

I see you are posting on lots of AA forums, and this is a plug for Dr Joel Wallach's products http://www.youngevity.net which I guess you are selling via network marketing, and your Facebook page is Star-Hope's 90 for Life.

Although your approach does look like spam, I realise you may just genuinely want to raise awareness, and network marketing does not necessarily equate to a bad product (we all have to make a living!)

So please can you give us details of the products your wife is using, at what dose, and for how long she has been doing it for? Has she also modified her diet?

If you could provide a link to the ingredients list in these products it would be especially helpful, as I cannot find this online. Also most AA/MDS patients will need to ensure that the products do not contain iron.

[Marlene]

Thanks for your thoughtful post Lulu. I too need to hear the details in order to assess this. For me knowing the counts, BMB results, prior lifestyle, etc are important details to know.

As you can tell from my posts, I'm a big advocate of nutrition and the role it plays in recovery. Especially, gut health and B12/folate/b6 as key to healing. But as we all know, not all Aplastic Anemia is a b12/folate issue.

I was able to find the list of ingredients for the basic formula:

http://www.youngevity.net/mm5/graphi...supplement.jpg

I think the selling point for this product is that it's made from whole foods versus synthetics. And that it has all the essential minerals and amino acids. But the forms of B12,folate and B6 are not the bio-active forms which I feel are better forms.

Travis, I'm happy that your wife's anemia responded well to the supplements. It's alway good to hear success stories. If you come back to check your post, hopefully you'll share more details.

Marlene

[starhope]

I have to apologize for sounding like spam. Yes I will admit that it is in a network marketing setup. I guess some of this comes from my own ignorance of other people's experience. Where Doc Wallach helped my wife so well, and you know it's a B'12 and folate deficiency, why aren't more doctors treating it from that direction. I can honestly say that the reason I'm hitting so many blogs is because it really makes me feel awful that I see so many people going through such a hard time with the transfusions and immunosuppression therapy. And I don't know what the answer is when the levels get low enough, I think we may have caught it earlier than a lot of people do, but I still feel that Youngevity could do a lot to help.

My wife was a vegetarian for years which we both believe to have contributed to it. However, we put her counts an a spreadsheet when this started happening, and we really feel like the main cause of her AA was the proton pump inhibitors (acid reflux medication) that she was put on, and heavy doses of it. Later we found out that she didn't even have acid reflux.

Any way, that's a different story. Doc did focus on her diet as well as digestion issues. He had her go gluten free, no soda pop 1 hour before or two hours after meals (she simply gave up the 1 or 2 cans a day of soda pop), digestive enzymes with every meal, flora (good bugs for the intestines) in the evening, this was all to reestablish her digestive system. For the B12 and folic acid he put her on two scoops twice a day of the Beyond Tangy Tangerine (BTT) (it's a mix you put in water) and one D-Stress capsule per meal (we found that my wife was sensitive to the velarian root in the Distress as it's a calming herb, it made her depressed). So she found a doctor that would give her a prescription for B-12 injections. Doc also recommended 3 essential fatty acid gel caps with each meal, but she couldn't take that many due to bruising so she started at one per day. She's now up to three EFAs (2 fish oils and one primrose oil) per day. He also started her on his calcium/magnesium formula, 1oz 2x per day, called Beyond Osteo-FX.

I understand you are concerned about iron, is this because of a buildup from blood transfusions? I had another guy mention this. BTTs have 1 mg of iron in it, but it's balanced with copper. If I remember right, you would have to confirm this, but I believe copper can be used to deplete high iron levels. But it has to be the right form of copper. Once again, that's going on memory, not any of Doc's instructions, and I'm definitely not a doctor.

I will gladly give you more details if you want. Usually if you type in Youngevity Beyond Tangy Tangerine Nutrition, you will find a page that shows all of his ingredients. I will send you a link as soon as I figure out how. I'm real new to this blogging thing, and I'm not the best with computers (good thing I picked mechanical engineering as as career, not computer science)

The one thing that has really impressed me about Doc Wallach is his knowledge on co-factors required for the the body to make use of each thing, i.e. calcium/magnesium/boron etc. He has a lot of years of research into them, and he used that knowledge to build his formulas. His book of a lot of his founding research is in the Smithsonian Institute (yes, please verify it for yourself, because it is a huge claim). It's Joel Wallach, the book is titled something like DISEASES OF EXOTIC ANIMALS.

His minerals and vitamins come from a mine in Utah. It's a bed of ancient vegetation, rich in nutrients and void of poisons. And his standards of excellence for his vitamins are high enough that he has a book published comparing his stuff to other top notch vitamin brands.

If you want to know more just let me know. I will try to remain diligent about checking on the blog. You also welcome to check out the Youngevity Webinar, every Tuesday at 7:15 mountain time, or either of his two radio shows every weekday, I think they start at 1. Once again, if you need more details, let me know. Doc also has videos and interviews on YouTube that I have seen.

Anything I can do to help, AA sucks, like so many other things. But this one hit close to home and it grates on me that it didn't have to happen. No one should have to suffer, I wish I knew and could do more. If you want to know Sheri's numbers, I'll look them up and post later, it's getting late and I want to have my facts straight.

God bless,
Travis

[Marlene]

Thanks for the information Travis. So sorry they missed your wife's B12/folate deficiency. It is so important to get a correct diagnosis otherwise, you end up chasing the wrong treatment plan. Long term use of proton pump inhibitors can and do cause nutrient depletion in many and has been overlooked by many doctors as a cause of disease.

I do believe they need to give more attention to nutritional status. The current assessments used by many are inadequate. It takes a while for main stream medicine to adopt more aggressive approaches to diet and nutrition. I think this is partly due to the fact that we haven't fully appreciated the changes taking place in our health due to our modern farming practices and the over reliance on processed, genetically modified foods. Eating a balanced diet no longer equates to good nutrition for many reasons.

Your story reinforces the need to ensure nutrition is a major factor in diagnosing and treating of any disease. Rule out the easy stuff first.

Regarding B12 shots...you may want to consider using the oral methyl form of B12. It's been shown to be equal, if not better to the shots. 1000 to 5000 mcg/day depending on what her B12 levels are now. If you search on B12 and folate/folic acid on this site you will find several threads that have some very in-depth info on it. Generally, the nutrients that play a key role in blood production are B12, folate, B6, copper, iron, zinc and magnesium. Vitamin D is also something to assess.

[starhope]

Sheri found the B12 injections just as a way to put additional B12 in her system, she figures it can't hurt and it's cheap. In actuality I do think she gets the majority of her B12 from Doc Wallachs formula Beyond Tangy Tangerine (BTT). It is in fact the methyl form of B12, 500mcg per serving, as well as containing the copper, zinc, D, and a ton of co-factors just as you described, and all set to the right ratios so one doesn't deplete the other. You know your stuff well, how come your not a doctor?

Okay, I got some of Sheri's numbers but I wrote some down wrong, so I need to get back to the files, but I will get her numbers posted. I don't know how to cut and paste a link, and you were looking for information, particularly on his formulas. I will attempt that as soon as I can get on a real computer. Trying to type on this small pad is a real bear, and I really messed up my first attempt. I do know that I can do a search on 'youngevity beyond tangy tangerine' which is the majority of what he calls the 'essential 90', it will put you on a site that has a link to a variety of products, including the 'BTT', if you click on the link to the Beyond Tangy Tangerine it will take you to a page just about it, and you will see link in there for SUPPLEMENTAL FACTS, that's where you can find the nutritional information breakdown. If you don't find it, let me know, and if you want me to drop it, tell me. I want to know more about AA and what I can do to help. You sound like you are either well studied up or from the medical field. Can you teach me more?

I'll get back with those numbers and hopefully a link.
God bless,
Travis Julius

[Marlene]

Hi Travis,

I did find the list of ingredients. Unfortunately, it doesn't spell out the form of the vitamins. Usually, when the label just says B12, it's usually the cyno form. When the manufacturers use the bio-available forms, they will state that.

Your best teacher for bone marrow diseases is to really spend some time reading the many posts on this board. There is quite a bit of good information on all aspects of blood disorders here. The folks here are a great resource and you will learn so much just by staying involved here and seeing the various nuances of the aplastic anemia. Most of the time I feel that the more I learn, the less I know. There is no "right" answer for everyone and I think you'll see that as you explore this forum.

Marlene