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Hayitsmenadine
Thu Nov 8, 2012, 02:11 PM
Hello everyone,

My name is Nadine and I was diagnosed with aplastic anemia and PNH in May of 2010. I am currently on Soliris and shark liver oil. I was on cyclosporine for 14 months and as of December 2011 I have been blood transfusion free. My levels are still on the lower end but are manageable. My platelets have been dropping and rising which led to me to seek alternative treatments.

Yesterday I went to see a holistic dr referred to me by a family friend. She said she was able to pinpoint the cause of my disease and how to treat it. Apparently I have formaldehyde toxicity in my liver. My spleen is overproducing red blood cells that my liver isn't breaking down. She did some pressure points on my liver and spleen to get circulation going and prescribed me cardio plus pills. I was also told not to eat any products with sodium nitrate (packaged lunch meats and subway.)

I am a very open person to new ideas and I am remaining hopeful that in 8 weeks I should be fine again, as she said. I am just wondering if anyone else has seeked out holistic treatment and how their experience was? I will keep everyone posted about how this whole treatment pans out.

Marlene
Fri Nov 9, 2012, 09:04 AM
Hi Nadine,

Keep us posted. I'm curious as to how she was able to pinpoint the cause of your disease.

We've done and continue to utilize a holistic/alternative approach in addition to the orthodox medicine. I cannot say that any one thing (in the alternative world) has had a direct effect on John's bone marrow. However, it has had a tremendous impact on his overall health. He had a lot of damage from treatment and we found alternative medicine and nutrition to be most helpful in healing.

Healing these serious blood disorders usually involves a more complex, comprehensive approach. Sometimes the best you can do is stop the progress. But anything you can do to facilitate healing, is a good thing. I hope you get good results from this treatment.

Marlene

Hayitsmenadine
Sat Dec 1, 2012, 04:06 PM
Hello everyone,

So I have seen my holistic dr about 3 times now. It has been a very interesting experience. Without sounding too crazy, she is able to have conversations with my body and tell me experiences about my past that have had toxic effects on my body. On my second visit she told me my spleen was damaged and unable to produce antibodies to help fix it. She did a few pressure points and gave me burdock to take. On my most recent visit I was told my small intestine was attached to my appendix and causing my appendix to hold a lot of toxins. She did some more pressure points and I am now taking folic acid, burdock and astragalus. I am scheduled to see her one last time and should be fine within a few weeks.

I have never asked how she knows what she knows because I am so desperate to be normal again that I will try everything I can. I will be getting my blood work done Monday and every two weeks there after to see how my body reacts. I should also say that I have completely changed my eating habits. No fast food, no processed food and lots of veggies and fruits. And I also asked my dr to take me off Soliris. I have been getting Soliris every 12 days and if I can successfully get off it I will be more than happy about it. So far I feel fine.

Lulu
Sun Dec 2, 2012, 02:03 PM
Hi Nadine, I guess your holistic Doc may be a Kinesiologist? They use a system of muscle testing which is alleged to find imbalances/weaknesses/nutritional deficiencies, and some use electronic diagnosis like the Vega machine or Biocom, where they put probes on acupuncture points. I trained as a nutritional therapist and some of my colleagues were very into these systems, but I have always been a tad sceptical of 'hocus pocus' therapies! However a relative had been ill for several years with an undiagnosable muscle wasting condition and progressive paralysis, went to a Kinesiologist who tested her muscles and told her she had lead poisoning. She had her water tested, and lo and behold, there were very high lead levels. She had the water system replaced and is now recovering. I saw the same Kinesiologist who knew nothing about MDS but after testing me, recommended shark liver oil. I am still a little sceptical about the methodology behind his diagnosis, but since taking SLO my white cell count has gone up to normal levels. Sometimes the diagnostic 'map' alternative therapists use is rather weird, but if it is doing no harm and you are feeling better, I would stick to it. It is more than can be said for the Western Orthodox medical system at times. Burdock is a herb traditionally used to help the liver and digestive system, and astralagus is a traditional chinese blood building herb, so there is a basis in science there. Are you taking folic acid as a precaution or because you have been tested as deficient? I would advise taking B12 as well as they are synergistic, and if you are low in B12, excess folic acid can make it worse. If your alternative therapist is a devout vegan, they may have selective hearing when it comes to the benefits of B12! Good luck anyhow, I will get off my nutrition soapbox now :)

HughHC
Sun Dec 2, 2012, 10:20 PM
I have been disgnosed with low risk MDS. As with any Bone Marrow disorder we are dealing with a serious and powerful disease.

I am absolutely opposed to limiting my avenues of potential therapeutic procedures to any holistic Doctor. I will continue to rely on established procedures for my hopeful therapy.

While I encourage anyone to seek all possible means for a hopeful recovery or at least forestalling further deterioration I would caution anyone from abstaining totally from mainstream medicine There have been all kinds of
"witch doctor" approaches that do nothung more that extract money from physically ill people desperate for a cure that cannot be found.\\Please be very careful

Momhope
Tue Jan 29, 2013, 11:19 PM
Hey how you did with this new doctory my mom is looking into this and would like to know how you did, so I can tell her, could you let me know. please??

Cheryl C
Thu Jan 31, 2013, 01:35 AM
I use some natural remedies too, but it's always best to check with your specialist re complementary medicine or do thorough research because there are some natural treatments which can actually be bad for blood diseases, eg Vitamin E if you have low platelets, etc. I watched an interesting presentation on complementary medicine on the AA and MDSIF online learning website soon after diagnosis.

LoveRapheal1
Sun Feb 17, 2013, 10:55 PM
I also have aplastic anemia. I completed the ATG treatment in October. I am still waiting for a response and have a 10/10 unrelated donor waiting for me in case this treatment does not work. I did purchase a book on herbal remedies. It is titled ConquerLowPlatelets.Com. I wouldn't suggest taking any herbs without consulting a doctor because they may interfere with your treatment or have harmful results. I am going to consult a specialist about this because I was thinking of taking herbs if all else fails or possibly before the transplant. The book is interesting and the author represents how it is important to cure the root of the problem which usually begins in the organs such as the liver digestive system as opposed to suppressing the problem with cyclosporine. The author also mentioned testing the liver and digestive system. Different herbs sound great but not with medicine interactions. I really don't know the answer myself but I wouldn't take any herbs without consulting a specialist. I'll let you know what happens when I see the doctor about it. Good Luck
Hello everyone,

My name is Nadine and I was diagnosed with aplastic anemia and PNH in May of 2010. I am currently on Soliris and shark liver oil. I was on cyclosporine for 14 months and as of December 2011 I have been blood transfusion free. My levels are still on the lower end but are manageable. My platelets have been dropping and rising which led to me to seek alternative treatments.

Yesterday I went to see a holistic dr referred to me by a family friend. She said she was able to pinpoint the cause of my disease and how to treat it. Apparently I have formaldehyde toxicity in my liver. My spleen is overproducing red blood cells that my liver isn't breaking down. She did some pressure points on my liver and spleen to get circulation going and prescribed me cardio plus pills. I was also told not to eat any products with sodium nitrate (packaged lunch meats and subway.)

I am a very open person to new ideas and I am remaining hopeful that in 8 weeks I should be fine again, as she said. I am just wondering if anyone else has seeked out holistic treatment and how their experience was? I will keep everyone posted about how this whole treatment pans out.

LoveRapheal1
Sun Feb 17, 2013, 11:01 PM
I don't mean to scare you but I am Norwegian and have heard of Shark Liver Oil. It is used in many treatments in Norway. I heard that it is an ambiguous drug. It can heal but it can also increase risks of cancer. Let me know what you find in your research. I do know that many drugs can do the same such as cyclosporine. The doctors told me it was a 5% risk but I am reading other statistics. Either way I do wish you well. I only mention this because I was going to take the oil myself. Maybe it does work. If so that is great but I'm not sure, so it would be wise to consult other doctors or specialists. Good Luck

Hello everyone,

My name is Nadine and I was diagnosed with aplastic anemia and PNH in May of 2010. I am currently on Soliris and shark liver oil. I was on cyclosporine for 14 months and as of December 2011 I have been blood transfusion free. My levels are still on the lower end but are manageable. My platelets have been dropping and rising which led to me to seek alternative treatments.

Yesterday I went to see a holistic dr referred to me by a family friend. She said she was able to pinpoint the cause of my disease and how to treat it. Apparently I have formaldehyde toxicity in my liver. My spleen is overproducing red blood cells that my liver isn't breaking down. She did some pressure points on my liver and spleen to get circulation going and prescribed me cardio plus pills. I was also told not to eat any products with sodium nitrate (packaged lunch meats and subway.)

I am a very open person to new ideas and I am remaining hopeful that in 8 weeks I should be fine again, as she said. I am just wondering if anyone else has seeked out holistic treatment and how their experience was? I will keep everyone posted about how this whole treatment pans out.

LoveRapheal1
Sun Feb 17, 2013, 11:24 PM
I am also receiving standard treatment but I must say I have thought about herbal remedies if all else fails. My only concern is how these drugs can counteract with meds that are still in your system or even interfere with increased risks of graft host rejections for future bone marrow prospects. This is what concerns me. I am going to consult my doctor about it. I was thinking about trying a trial period with herbs if this ATG and cyclosporine doesn't work before this bone marrow transplant procedure. I'm going to tell the doctor my plans and ask him if or when it is safe after weaning of cyclosporine and all these meds. I don't think it can hurt if it is short term and I believe I'll survive this. That is what we have to think. Our doctor's are their to help.

I have been disgnosed with low risk MDS. As with Iany Bone Marrow disorder we are dealing with a serious and powerful disease.

I am absolutely opposed to limiting my avenues of potential therapeutic procedures to any holistic Doctor. I will continue to rely on established procedures for my hopeful therapy.

While I encourage anyone to seek all possible means for a hopeful recovery or at least forestalling further deterioration I would caution anyone from abstaining totally from mainstream medicine There have been all kinds of
"witch doctor" approaches that do nothung more that extract money from physically ill people desperate for a cure that cannot be found.\\Please be very careful

Lulu
Mon Feb 18, 2013, 09:19 AM
I don't mean to scare you but I am Norwegian and have heard of Shark Liver Oil. It is used in many treatments in Norway. I heard that it is an ambiguous drug. It can heal but it can also increase risks of cancer.

Hi Raphael, I have had a look for any references to it increasing the risk of cancer, and the only thing I can find is that SLO (and any fish liver oil for that matter) has the potential to be contaminated with PCBs and other heavy metals, which are carcinogenic. So it depends where the shark has been feeding. For this reason I only buy New Zealand SLO, which is less likely to be contaminated. Obviously sharks travel, so this doesn't guarantee anything, I know!

LoveRapheal1
Tue Feb 19, 2013, 09:53 PM
LuLu

I did not mean to offend anyone. I was thinking of taking herbs myself and just ordered a book of herbs that are used around the world. I was thinking of taking herbs myself and I was just concerned about my health as everyone else is. Thank you for your feedback.
Hi Raphael, I have had a look for any references to it increasing the risk of cancer, and the only thing I can find is that SLO (and any fish liver oil for that matter) has the potential to be contaminated with PCBs and other heavy metals, which are carcinogenic. So it depends where the shark has been feeding. For this reason I only buy New Zealand SLO, which is less likely to be contaminated. Obviously sharks travel, so this doesn't guarantee anything, I know!