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marc
Wed Sep 17, 2008, 09:11 PM
Hi all,
I did a quick search and didn't find any info for what I was looking for so I thought I would post a question. Has anyone found any holistic or natural remedies to boost red cell production in patients with AA?

I have PNH and AA with a small sprinkling of MDS as well. THe PNH and MDS are under control, as much as either of those two can be. But the AA is giving me issues. I normally transfused when my counts hit below 8 and the counts would then climb to about 10.5. I usually transfused every three to four weeks.

Lately though, my counts are only climbing to about 9.5 and lasting two weeks. I have literally tried every prescription/infusion/treatment available except a second round of ATG. My hemo doc and I are considering a second round with the rabbit (ATL) in the next month or two. We've done the procrits, vidazas, ananesps (sp), steroids, etc, etc and so on. At this point my options are very limited and a BMT is not on the table at this time due to issues I don't want to go into right now.

I have been to the NIH, Cleveland Clinic, NYU Med Center, Fred Hutch, Loyola and Chicago Hospitals in Illinois as well as Rush University. Since they haven't come up with a new viable option I thought I would see if maybe there was a natural/holistic therapy people have tried and had success with.

Please let me know if anyone has any info, I would greatly appreciate it. I hope everyone else is well and I look forward to your help.

Regards,
Marc

Wendy Beltrami
Wed Sep 17, 2008, 11:24 PM
Marc,

We tried herbs and acupuncture as alternative therapies but didn't really see any significant improvement. That being said, I still believe both of these treatments were beneficial in making our son feel better and keeping his organs healthier.

I think that it might be helpful for you to start asking about the freshness of the blood products you are receiving. RBCs have a fairly long shelf life- we were usually able to get units with nearly a month left before expiring. If you are getting RBCs that are expiring within a week, the bump you get may not last as long as it could.

Wendy/ mom to Grant
dx 12/4/98 AA
MUD BMT 9/11/08
Today is Day +6
SO FAR SO GOOD!

marc
Thu Sep 18, 2008, 09:54 AM
Wendy,
Thanks for the reply and info. My Hemo doc mentioned the same about the blood shelf life so we are looking into that. It's hard to have the blood bank pick and choose though. I think you more often than not get the next unit in line. Which I think is only fair but it would sure be nice to get one with the longer shelf life.

I'm actually heading over for a transfusion today and will ask if they can pick some fresher blood. (I sound like a vampire).

Thanks also about the herbs and acupuncture. I have been in touch with an acupuncturist and may consider it except it's not covered by insurance.

Oh well, gotta go get a fill up. Thanks again.
Marc

Marlene
Thu Sep 18, 2008, 10:52 AM
Marc,

Take look at these. The first two address the use of anti-oxidants to help regulate normal blood cells in MDS and then PNH. The last is something I came across only in the past few months. It's being used for immune diseases, cancer, autoimmune, etc. It's using an approved drug, off-label at very very low doses.

http://seandennis.com/nac4mds/

http://lib.bioinfo.pl/auth:Fibach,E

http://www.ldninfo.org/index.htm

John has used herbs and acupuncture also. He saw no difference with chinese herbs but the acupuncture has been beneficial for his overall energy. He also does lots of stuff with nutrition via what we eat and supplements. Do you know if you are getting an adequate intake of the "classic" vitmains and minerals for supporting blood production?

Marlene

fibogann
Sun Sep 21, 2008, 11:27 PM
Hi Marc,

My son used Blood Well and Blood Tonic from http://www.getwellnatural.com
as herbal supplements that helped. Blood Well was used initially during the treatment phase of his aplastic anemia together with Blood Tonic. When his blood counts stabilise, he used Blood Tonic for another year (maintenance phase) and after that was off all of these herbal supplements. We believed these herbs helped him greatly in his haemoglobin reaching normal counts after his ATG.

Regards

Peter Lim

kcbabe
Thu Aug 27, 2009, 11:52 AM
Hi Peter,
My brother is under going ATG treatment, today is day 2 of 5. I'm looking to supplement his treatment. How much of each did you give your son during treatment? How much during the blood count stabalizing phase & how long was that? Was the Dr. ok with it? How is your son doing now and what other alternative remedies have you tried?
Thank you,
Reeran


Hi Marc,

My son used Blood Well and Blood Tonic from http://www.getwellnatural.com
as herbal supplements that helped. Blood Well was used initially during the treatment phase of his aplastic anemia together with Blood Tonic. When his blood counts stabilise, he used Blood Tonic for another year (maintenance phase) and after that was off all of these herbal supplements. We believed these herbs helped him greatly in his haemoglobin reaching normal counts after his ATG.

Regards

Peter Lim

Ruth Cuadra
Thu Sep 3, 2009, 02:52 AM
Hi, Reeran.

Peter has not been around on Marrowforums for about a year, but I can tell you that his son made a complete recovery from aplastic anemia. I've contacted him privately to see if he could come by and provide an update for you, but in the mean time you might like to read some of his older posts by clicking "Find all posts by fibogann" on his profile page.

Regards,
Ruth

kcbabe
Thu Sep 3, 2009, 12:08 PM
Thanks for the notice. I'm so happy to hear Peter's son made complete recovery. We've only just begun ours so the road seems daunting. I'm also still trying to figure out how to use this forum and still reading all the posts when I have time. Thanks for having such a great forum!
Reeran

Hi, Reeran.

Peter has not been around on Marrowforums for about a year, but I can tell you that his son made a complete recovery from aplastic anemia. I've contacted him privately to see if he could come by and provide an update for you, but in the mean time you might like to read some of his older posts by clicking "Find all posts by fibogann" on his profile page.

Regards,
Ruth

fibogann
Fri Sep 4, 2009, 09:55 AM
Hi Peter,
My brother is under going ATG treatment, today is day 2 of 5. I'm looking to supplement his treatment. How much of each did you give your son during treatment? How much during the blood count stabalizing phase & how long was that? Was the Dr. ok with it? How is your son doing now and what other alternative remedies have you tried?
Thank you,
Reeran

Hi Reeran,

The supplements taken in the recovery phase were recommended and prescribed by Dr Ba Hoang of http://getwellnatural.com and he sits on the Advisory Board of Allergy Research Group. You can get to know more about him from the writeup on the Allergy Research Group here at the following link:
http://www.allergyresearchgroup.com/Advisory-Board-sp-17.html.

We started off the supplements immediately after the ATG. Following is an excerpt from our story as lodged in aplasticcentral's stories section:

"SHARK LIVER OIL THERAPY
====================
The shark liver oil worked to stabilise the falling blood counts and within two weeks started to indicate improvements to platelets, WCC and neutrophils. Beginning from that time onwards, Stan became transfusion independent, as the shark liver oil begin to help his bone marrow function.


HERBS
======
The herbs were in capsule form and as a herbal tea tonic. The herbs and tea worked according to the general projection by the complementary doctor's timing. He told us the herbs worked fast and within 2 to 3 weeks we would see improvements, and it was so. Stan's platelets was the first to improve with 10K increase every 4 days and then lately it jumped 25K a week with the effect of the herbs and shark liver oil working together
We were very concerned about the platelets, because the period for the platelets transfusion was getting shorter and shorter so that every 4 days it was needful to have a platelets transfusion after the ATG. We were prescribed shark liver oil to help in platelets production. Within a week of taking the shark liver oil, the platelets count stayed and improved and no further platelets transfusion were required.

However his haemoglobloin and white blood cells continued to drop, and Dr Ba put my son on Blood Tonic and Blood Well tea. I was told it would take around 4- 5 weeks or so to see the effects of the herbs. Indeed, at the end of 4 and a half weeks after taking the Blood Tonic and Blood Well tea, white blood cell counts and haemoglobin improved and he became free from the red blood cells transfusion. He was treated with ATG on February 2002, and was transfusion independent in late April 2002, and was off all drugs since then, including cyclosporine."

----------------------

During the recovery phase, 600 mg of shark liver oil, twice a day half hour before meals. The standard capsule comes in 1000mg, so it was needful to break the capsule to acquire the necessary dosage. I do not have the dosage for the other herbs handy as it has been more than 7 years since, but I do recall the doctor increasing the dosage based on the response. There is a recommended dosage on the packaging as well, but I'm clear that the dosage was more than that listed on the bottle during the early stages and was modified and adjusted by Dr Ba as the progress became known.

My son has completely recovered. It has been more than 7 years since his episode with AA. He still takes the shark liver oil as a daily supplement, and other herbal supplements from time to time esp to ward off the winter flu as he doesn't go for flu jabs and so on. His blood counts are all normal.

Dr Ba is currently now in Vietnam assisting the vietnames government in setting up a specialised cancer hospital but I understand his associate is practising in San Jose with a clinic that is open for consultation.

I hope my recollection of events has been of some help.

Warmest Regards

Peter Lim

kcbabe
Fri Sep 4, 2009, 10:44 AM
Hi Peter,

Thanks for coming back to email me! I sincerely appreciate it. Let me tell you that your posts have been so reassuring and informative to someone who's a big believer in complimentary therapies. I sent you a private email about my correspondence with Dr. Ba whose address I got from your previous post.

Dr. Ba Hoang basically referred me to his associate (brother perhaps?) Dr. Huy Hoang who's in Lawndale, CA. I'm going to contact today for appt. Going to drive Richard to see Dr. Paquette today also and get his ok to take the Blood Well, Blood Tonic and Minecel.

Can you tell me where you're purchasing the shark liver oil?

fibogann
Sat Sep 5, 2009, 11:38 AM
Hi KCBabe,

I purchase the shark liver oil from Nutralife. It is important that you select the shark liver oil that is made from deep sea sharks that is free from pollutants, such as the deep sea sharks of New Zealand and Australia. The shark liver oil is ordered through the local Health shop and Nutralife has their website on http://www.nutralife.com.au and http://www.nutralife.com.nz

Do not mix up shark liver oil with the pure squalene that is being promoted heavily nowadays.

Regards

Peter Lim

Robi1Knobi
Fri Oct 16, 2009, 03:50 AM
Hi there,

Thanks so much for mentioning alternative therapies. This is a hard disease to swallow, if you don't know how to help yourself. 3 years ago I was diagnosed with mild aplastic anemia, but now think it is progressing to moderate based on my labs. I don't feel any different, but Dr. Neal Young will let me know when I visit him Thanksgiving week. Anyway, I wanted to tell you not only do I try to eat macrobiotically as much as possible, but also started taking Juice Plus supplements over a year ago. I am a full time RN, working in a NICU, who was working 2-3 shifts (24-36 hrs) a week, but since hubby's layoff in February, have been working 4 night shifts a week= 48 hours. I would not have the energy to do that if it weren't for Juice Plus. It is 17 different RAW fruits and vegetables in capsules, and also 9 RAW berries in capsules. The reason I think its so great is that it has been studied worldwide, and it works! It has been proven to prevent DNA mutations, which is huge, since I already have a TERC (RNA) mutation. I need all the help I can get. It has not boosted my Hgb, but it does give me the energy I need to go to work, and also keeps me from getting sick. I have only been sick once in a year. If you would like to look at my webpage to see the research, please do www.helpyourselfwithjuiceplus.com. Sincerely, Linda
p.s. I am not trying to sell this product to anyone, just wanting to share information....

gina66
Mon Nov 12, 2012, 05:32 PM
Fibogann,

Did your son stop taking all medicines when he started the shark liver oil?