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Alternative Treatments Complementary and alternative medicine; natural and holistic approaches

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  #26  
Old Mon Feb 24, 2014, 09:30 AM
Mseth Mseth is offline
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Freedomforever, are you trying any ayurvedic treatment with success?
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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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  #27  
Old Sun Mar 2, 2014, 07:25 AM
joesmith joesmith is offline
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Quote:
Originally Posted by freedomforever View Post
How did you know? Did you have a direct experience with James Vaidyan for you to say that he is charging too much? Considering the cost of the conventional treatment of MDS or AML, and other blood and bone marrow diseases which would cost hundreds of thousands if not millions, what he is charging at $200 (provided your claim is true), is actually nothing compared to the hospital costs.

Better that you share your experience/s here than giving seemingly partial opinions. TIA!
Hello There - I know because I have had direct contact with James Vaidyan and went through the experience. I used the word "seems" as each case and treatment is different. Remember MDS is not a disease but relates to a collection of blood-related diseases. I just wanted to "alert" members of this forum trying to find alternate treatments for their loved ones of the associated costs but I did not want to "discourage" anybody that can afford it. As for the costs, I also clearly indicated that the common man in India cannot afford Ayurveda medicines costing Rs. 1000 per day. However Mr Vidyan has several clients mostly foreign nationals on medical tourism or NRI's who can easily afford his treatment. Probably his treatment is also working but I do not know for sure and cannot comment on that.

I also totally agree that for people who can afford, in your words "hundreds of thousands if not millions", $200 is pocket-change- nothing more than a drop in the ocean.

My loved one is battling MDS but we are unable to afford James Vaidyan's experimental treatment at this stage. "hundreds of thousands if not millions" and/or Rs. 1000/day for an experimental treatment which in Mr Vaidyan's own words may not work, is beyond our humble means.

This was my personal experience with Mr Vaidyan's treatment. We look forward to your "complete opinions" on how this treatment including costs worked in your case. Peace!
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  #28  
Old Sun Mar 2, 2014, 09:30 AM
Mseth Mseth is offline
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Hi Joesmith,

Thanks for sharing your experience with Vaidyan. Since there are very limited options for treatment for MDS, like many others, I am also always on the lookout for any treatment that may give some benefit. And are willing to try experimental treatment also as long as there is no harm.
If you have any further details on the proposed length and type of treatment suggested by him, and if Vaidyan has been able to cure or improve any other MDS case, please do share the iformation. It will be of great help to me and maybe some others as well.
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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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  #29  
Old Sat Mar 8, 2014, 12:18 AM
joesmith joesmith is offline
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Originally Posted by Mseth View Post
Hi Joesmith,

Thanks for sharing your experience with Vaidyan. Since there are very limited options for treatment for MDS, like many others, I am also always on the lookout for any treatment that may give some benefit. And are willing to try experimental treatment also as long as there is no harm.
If you have any further details on the proposed length and type of treatment suggested by him, and if Vaidyan has been able to cure or improve any other MDS case, please do share the iformation. It will be of great help to me and maybe some others as well.
Hi Mseth - Firstly I hope your mom is doing well. I have not tried Vaidyan's treatment as I could not afford it so I cannot comment on the effectiveness of his treatment. However I did connect with few of his patients successfully treated by him and they were complimentary of his treatment. Vaidyan did mention that his medicines are effective for patients with primary MDS versus those with secondary MDS. Each one's case is different so I am not sure what kind of condition your mom is dealing with. Feel free to reach out to me privately if you would like to discuss further. Will be glad to share any information that may help you. Good luck!
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  #30  
Old Sat Mar 8, 2014, 02:00 AM
Mseth Mseth is offline
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Hi Joesmith,

Thanks for responding. Have sent you a pm.
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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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  #31  
Old Mon Mar 10, 2014, 09:26 AM
joesmith joesmith is offline
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Originally Posted by Mseth View Post
Hi Joesmith,

Thanks for responding. Have sent you a pm.
Havent received any private message from you yet!
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  #32  
Old Mon Mar 10, 2014, 09:47 AM
joesmith joesmith is offline
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Havent received any private message from you yet!
Sorry got your pm and have responded. Good luck!
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  #33  
Old Mon Mar 10, 2014, 05:31 PM
Bambam Bambam is offline
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A cure? From Ayurveda?

While I would dearly love to believe that Ayurveda can cure my MDS/Acute Myeloid Leukemia, I don't.
I've felt desperate at times, anxious to try anything - and believe me, well-meaning people have suggested everything, from Ayurvedic medicine, mountain plants (boiled in water), Cannabis oil, almond kernel oil and other alternative treatments. Ayurvedic treatment is known to include high levels of metal - not a good idea for somebody with bone marrow cancer. http://www.ncbi.nlm.nih.gov/pubmed/15598918
Although I have for the most part followed a healthy life, consuming good quality food, no alcohol and minimal caffeine, minimal medications, lots of walking and maintaining a healthy body weight, I have had to place myself in the trust of highly qualified doctors, scientists, who know more about the bone marrow than any alternative practitioner will ever know.
I know how desperate one is to find a cure for these dreadful conditions, but I also know that only God and a good Hematologist can effect the best outcome for me.
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DX MDS RA Low Risk August 2012. DX Changed to MDS RAEB1. Progressed to AML July 2013. Participated in clinical chemo trial CPX351 and relapsed four months later in March 2014. Maintenance chemo -VIDAZA (AZA) stopped after 4 rounds. Awaiting full report from BMB.
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  #34  
Old Tue Mar 11, 2014, 07:15 AM
Mseth Mseth is offline
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Treatment

Hi Bambam,

Thanks for the link.
Yes, its the desperation to find a way out that leads us to exploring and experimenting. Whats the choice in a MDS situation, little or no treatment options, no estimation of disease progression, so little known about anything. Its just a crazy flurry of blood tests, injections, appointments, and transfusions. Its now almost a year since my mother's diagnosis, and every month we hope there will be some improvement or something will make a difference, but at the end of the day nothing helps to improve the red cell count.
Its good that you have settled with one form of treatment and have peace on that front at least.
Alll the best to you!!
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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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  #35  
Old Sun Mar 16, 2014, 08:17 AM
ravik ravik is offline
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please help with Ayurveda treatment details

Hi Joe,
My name is Ravi from Bangalore, India. I recently diagnosed with deletion 20q chromosome abnormalities in 35% of cells in my bone marrow. I am desperately looking for Ayurveda treatment. In your post you mentioned that you spoke with some people who got treated successfully with Vaidyan's treatment.

I request you to send those details to my email id ravikumar.pelluru@gmail.com.

You are the only one I know who got some info regarding Ayurveda treatment for MDS. You are my ray of hope now. So please send me some info.

Thanking you
ravi

Last edited by ravik : Sun Mar 30, 2014 at 04:33 AM.
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  #36  
Old Mon Mar 17, 2014, 01:59 AM
Bambam Bambam is offline
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Exclamation Please read all the posts here about Ayurveda

Hello Ravi,
I can understand your wanting to try something that is believed to cure MDS. However, I urge you to read all the cautions in the preceding posts. And to ask yourself, where is the scientific PROOF of a cure? I love the concept of alternative therapies but have learned to err on the side of science primarily, with a little help from scientifically proven supplements, e.g. Omega 3, Vitamin D (we don't have as much sun as Bangalore!) and a multi vitamin that does not contain iron or zinc.
I wish you only the very best and hope you will take the time to read the literature.
Warm wishes,
Bam bam
__________________
DX MDS RA Low Risk August 2012. DX Changed to MDS RAEB1. Progressed to AML July 2013. Participated in clinical chemo trial CPX351 and relapsed four months later in March 2014. Maintenance chemo -VIDAZA (AZA) stopped after 4 rounds. Awaiting full report from BMB.
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  #37  
Old Thu Mar 20, 2014, 12:49 PM
ravik ravik is offline
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Hi BamBam,
Thank u for warning me about Ayurveda treatment. As long as the medicine contains only herbal products then I would like to give a try. But I have to think about the cost. Rs.30,000 is too much for one month medicine.
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  #38  
Old Thu Mar 20, 2014, 05:51 PM
Birgitta-A Birgitta-A is offline
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Exclamation Ayurvedic medicinal products

Hi All,
There are no herbal products that can contain so much heavy metals (lead), pesticides and bacteria as ayurvedic medicinal products. Be careful!

Then I think all of us understand that ayurvedic medicinal products never cure leukemia. If this was true this forum wouldn't have any patients from India but we have many persons with MDS from this country.
Kind regards
Birgitta-A
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  #39  
Old Fri Mar 21, 2014, 03:30 PM
Bambam Bambam is offline
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Exclamation Please clarify

Quote:
Originally Posted by Birgitta-A View Post
Hi All,...

... Then I think all of us understand that ayurvedic medicinal products never cure leukemia. If this was true this forum wouldn't have any patients from India but we have many persons with MDS from this country.
Kind regards
Birgitta-A
Hi Birgitta, please clarify what you mean. Not only do I have MDS but I also have secondary AML, so am trying to understand what you mean, for every comment matters to me. Thanks
__________________
DX MDS RA Low Risk August 2012. DX Changed to MDS RAEB1. Progressed to AML July 2013. Participated in clinical chemo trial CPX351 and relapsed four months later in March 2014. Maintenance chemo -VIDAZA (AZA) stopped after 4 rounds. Awaiting full report from BMB.
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  #40  
Old Fri Mar 21, 2014, 03:34 PM
Bambam Bambam is offline
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Exclamation Herbal does not mean toxin free

Quote:
Originally Posted by ravik View Post
Hi BamBam,
Thank u for warning me about Ayurveda treatment. As long as the medicine contains only herbal products then I would like to give a try. But I have to think about the cost. Rs.30,000 is too much for one month medicine.
Hi Ravi,
Please understand that the earth in which herbs grow will affect the quality of the plant. It follows, then, that herbs grown in toxic soil will produce toxic plants. Therefore, all things "herbal" are not necessarily good for us. Do you have a reputable and reliable hematologist?
__________________
DX MDS RA Low Risk August 2012. DX Changed to MDS RAEB1. Progressed to AML July 2013. Participated in clinical chemo trial CPX351 and relapsed four months later in March 2014. Maintenance chemo -VIDAZA (AZA) stopped after 4 rounds. Awaiting full report from BMB.
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  #41  
Old Fri Mar 21, 2014, 03:45 PM
joesmith joesmith is offline
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Quote:
Originally Posted by ravik View Post
Hi Joe,
My name is Ravi from Bangalore, India. I recently diagnosed with deletion 20q chromosome abnormalities in 35% of cells in my bone marrow. I am desperately looking for Ayurveda treatment. In your post you mentioned that you spoke with some people who got treated successfully with Vaidyan's treatment.

I request you to send those details to my email id ravikumar.pelluru@gmail.com. If you have skype id, please share with me so that we can talk over weekend. my skype id is ravipelluru.

You are the only one I know who got some info regarding Ayurveda treatment for MDS. You are my ray of hope now. So please send me some info.

Thanking you
ravi
Hi Ravik - Firstly I am so sorry to hear about your condition. I have shared your information with a very good friend of mine that will contact you shortly. Please stay strong. Several patients have been able to overcome and/or keep the disease in its tracks without letting it worsen. Things will work out. My friend will contact you on your private email shortly.
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  #42  
Old Fri Mar 21, 2014, 05:19 PM
Birgitta-A Birgitta-A is offline
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Ayurvedic medicinal products

Hi Bambam,
You know there are so many research centers all over the world trying drugs for MDS. If ayurvedic medicinal products did cure leukemia or MDS researchers especially in India would try it.

In the US they actually look for herbs that can have a positive effect in cancer patients without being too toxic.
Kind regards
Birgitta-A
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  #43  
Old Wed Mar 26, 2014, 05:45 PM
joesmith joesmith is offline
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Quote:
Originally Posted by Birgitta-A View Post
Hi Bambam,
You know there are so many research centers all over the world trying drugs for MDS. If ayurvedic medicinal products did cure leukemia or MDS researchers especially in India would try it.

In the US they actually look for herbs that can have a positive effect in cancer patients without being too toxic.
Kind regards
Birgitta-A
Birgitta - It is not only in the US but also in India (and also the other countries such as Israel) researchers are looking for herbs and treatments that can have a positive desired effect without being toxic. This is not just something that is done in the US. Not sure what your experience or expertise is with India but I have traveled extensively and been to India a couple of times and can assert this from my personal experience.
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  #44  
Old Wed Mar 26, 2014, 08:10 PM
Chirley Chirley is offline
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Hi Joe. My haem/Onc is Indian. He warned me specifically not to trust Indian medicine nor to have any treatment in India because they don't have the same Quality Control Laws and Guidelines as most other countries.

I have to trust that he knows what he's talking about.

Personally, I like to think that by using natural herbs and plants that effective treatments and cures will be found and if I was younger and terminal with no available scientifically tested and proven treatment available I might just be tempted to try natural remedies and alternative treatments but I don't think they should be the first line of treatment.
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  #45  
Old Sun Mar 30, 2014, 04:17 AM
ravik ravik is offline
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thank you

Quote:
Originally Posted by joesmith View Post
Hi Ravik - Firstly I am so sorry to hear about your condition. I have shared your information with a very good friend of mine that will contact you shortly. Please stay strong. Several patients have been able to overcome and/or keep the disease in its tracks without letting it worsen. Things will work out. My friend will contact you on your private email shortly.
Hi Joe,
Thank you for sharing my details with your friend. I am waiting for his reply.

Thanks
ravi
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  #46  
Old Sun Mar 30, 2014, 04:29 AM
ravik ravik is offline
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Ayurveda can't be ruled out completely

Quote:
Originally Posted by Chirley View Post
Hi Joe. My haem/Onc is Indian. He warned me specifically not to trust Indian medicine nor to have any treatment in India because they don't have the same Quality Control Laws and Guidelines as most other countries.

I have to trust that he knows what he's talking about.

Personally, I like to think that by using natural herbs and plants that effective treatments and cures will be found and if I was younger and terminal with no available scientifically tested and proven treatment available I might just be tempted to try natural remedies and alternative treatments but I don't think they should be the first line of treatment.
Hi Chirley,
As for as I know Ayurveda is an ancient science in India like Yoga. So I think we can't rule it out completely. I agree that at present it is being practiced by individuals who are not under any regulations. But now a days there are so many colleges that are teaching Ayurveda as a science. So I hope things will improve in future if Indian government takes some measures.

Thanks
ravi
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  #47  
Old Sun Mar 30, 2014, 06:45 PM
Chirley Chirley is offline
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Ravi, I hope that there are strict regulations put in place too because I believe that like Chinese Medicine there has been thousands of years of wisdom and knowledge behind Ayurveda.
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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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  #48  
Old Mon Mar 31, 2014, 09:18 PM
Kathy S Kathy S is offline
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I think everyone wants the "miracle cure" out of desperation. I personally do not feel that the pharmaceutical companies have ever found a 'cure' for anything. Doctors cut out, burn with radiation or fill bodies with harmful chemicals in hopes of halting the progress of these horrible diseases. Whatever keeps the hope alive for anyone of us is a plus. Have just read Radical Remission..surviving cancer against all odds by Kelly A. Turner, PhD. I believe anything that works is worth trying. Life should be about no regrets.
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Kathy,wife of 69 year old male with DX June 2013 with MDS= RAEB 2refractory with Extra Blast Very High Risk WBC 1.9-RBC 2.29-HGB 8.1-PLT 32-, as of Aug 2013:. BMB 12/4/13= WBC 5.57/RBC 4.86/HGB 15.5/HCT 42.8/RDW 49.6/PLT 188. 3% blast.BMB 4/11/14 WBC1.6,PLT12,RBC2.6,HGB9.2
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  #49  
Old Tue Apr 1, 2014, 08:11 AM
Marlene Marlene is offline
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Radical Remission is on my reading list as well as the Doctor that Cures Cancer. I take it from your post, that it's worth it.

Thanks....M
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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 July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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  #50  
Old Tue Apr 1, 2014, 10:20 AM
Kathy S Kathy S is offline
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I feel anything that has a possibility of 'HOPE" is worth looking into. Blessings and hope you find it interesting. Found that many of the things in Radical Remission are what my husband has done to put him into remission. How long it last is in Gods hands.
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Kathy,wife of 69 year old male with DX June 2013 with MDS= RAEB 2refractory with Extra Blast Very High Risk WBC 1.9-RBC 2.29-HGB 8.1-PLT 32-, as of Aug 2013:. BMB 12/4/13= WBC 5.57/RBC 4.86/HGB 15.5/HCT 42.8/RDW 49.6/PLT 188. 3% blast.BMB 4/11/14 WBC1.6,PLT12,RBC2.6,HGB9.2
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