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Alternative Treatments Complementary and alternative medicine; natural and holistic approaches

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  #1  
Old Sun Jul 15, 2012, 11:37 PM
RosaleeS RosaleeS is offline
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Blood tonics, organic juicing, and alternatives

Hello,
Posting this for my mother who was diagnosed recently with AA. The doctor recommends starting out with cyclosporine, but we are trying out some alternatives first. She is taking shark liver oil, and is taking a blood tonic a Korean doctor recommended. She is also juicing everyday with organic vegetables and fruits. Has anyone else had Any success with these types of alternatives?
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  #2  
Old Sun Jul 15, 2012, 11:41 PM
triumphe64 triumphe64 is offline
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Originally Posted by RosaleeS View Post
Hello,
Posting this for my mother who was diagnosed recently with AA. The doctor recommends starting out with cyclosporine, but we are trying out some alternatives first. She is taking shark liver oil, and is taking a blood tonic a Korean doctor recommended. She is also juicing everyday with organic vegetables and fruits. Has anyone else had Any success with these types of alternatives?
I Doubt it.
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Dallas, Texas - Age 77 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #3  
Old Mon Jul 16, 2012, 12:06 AM
RosaleeS RosaleeS is offline
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Blood tonics, organic juicing, and alternatives

Btw...my mother just turned 80 and is a new member to the forum. She has taught ballroom dancing most of her life and has enjoyed good health until diagnosed with AA recently. We think this may have started when she first took Avalon last year for an infection. The Avalox caused a rapid unsteady heartbeat and the doctor started her on Coumadin ever since until diagnosed with AA. She is off the Coumadin now and we have read many encouraging stories about people that tried the alternatives she is now trying, so the doctor said go ahead with them for now if she wants.
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Age 80..diagnosed AA 2 months ago
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  #4  
Old Mon Jul 16, 2012, 12:32 AM
triumphe64 triumphe64 is offline
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Did she have a bone marrow biopsy? Is she getting transfusions?
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Dallas, Texas - Age 77 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/

Last edited by triumphe64 : Mon Jul 16, 2012 at 12:40 AM. Reason: To add another sentence.
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  #5  
Old Mon Jul 16, 2012, 12:43 AM
RosaleeS RosaleeS is offline
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She is currently receiving transfusions and she did have a biopsy to confirm AA.
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Age 80..diagnosed AA 2 months ago
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  #6  
Old Mon Jul 16, 2012, 01:46 AM
Hopeful Hopeful is offline
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I wouldn't delay starting the cyclosporine, as it takes a few months to see the results. You could always try the alternative medicines in parallel (after carefully checking for interactions). If she has an immune attack going on, the sooner she starts treatment, the better chance of it working.
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #7  
Old Mon Jul 16, 2012, 09:20 AM
Marlene Marlene is offline
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There are some who have been successful with just natural treatments. I don't recall anyone on this forum who has done this though. Most combine allopathic with natural/holistic approaches. And with natural approaches, they vary quite a bit. Also, they estimate about 20% go into remission without any intervention. Unfortunately, there is no way to predict outcomes.

With is this disease, it take a while to see a positive response no matter what path you take. Be sure to keep track of CBC's. You want to watch for trends in all three lines....Red, white and platelets. If they continue to trend down or if time between transfusions lengthens, then you may want to reconsider your approach.

It's important that they baseline her iron, B12, folate, copper, Vit D, B6 and zinc levels. A low-normal B12 needs to be treated. So if they have not checked this, find out what her levels are. And if she's supplementing with B12 now, you will most likely get a falsely elevated result unless you stop about one week before testing. To further assess B12, they should run a MMA and homocysteine level. At 80, it's very possible that her B12 is low and with the coumadin, she could have had some bleeding contributing to lower than normal HGB as well lower iron stores. Red cell transfusions will replace lost iron so hopefully you have iron results pre-transfuions.

Please let us know how she progresses with all of this.
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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 January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #8  
Old Mon Jul 16, 2012, 11:43 PM
dfantle dfantle is offline
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I think I remember reading that fish oil is not good to take if platelets are low, so you may want to verify what your mom's platelet count is and talk to her doctors before she takes anymore of the shark liver oil, just to be sure.

Regarding the Korean blood tonic, I wonder if this is Red Ginseng, do you know? I just googled "Korean blood tonic" and that is what came up.

Best, Dena
Sent from my mobile phone
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Dena
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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  #9  
Old Tue Jul 17, 2012, 05:56 AM
NLJabbari NLJabbari is offline
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Hi, I haven't posted in a while, but do come by to see what's new...I've heard or rather know of only one person w AA who has done well using an alternative method instead of (ATG/cyclosporine). I believe her name is Marla Brown...I'm not sure if she visits this forum though. BTW, If I recall correctly--I think her method only involved juicing though. She did get supportive care via transfusions for quite a while till things turned around for her.
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06/2004 my son was dx with SAA at the age of 10. No sibling BM match. He underwent ATG (H)/CsA. Relapsed 05/12 & dx'ed w/PNH. Currently in wait/see mode for Solaris as he is asymptomatic...
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  #10  
Old Wed Jul 18, 2012, 02:25 AM
Lisa V Lisa V is offline
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Originally Posted by NLJabbari View Post
Hi, I haven't posted in a while, but do come by to see what's new...I've heard or rather know of only one person w AA who has done well using an alternative method instead of (ATG/cyclosporine). I believe her name is Marla Brown...I'm not sure if she visits this forum though. BTW, If I recall correctly--I think her method only involved juicing though. She did get supportive care via transfusions for quite a while till things turned around for her.
I was thinking of Marla too, Norma. She is the only person I can think of who has had measurable success using alternative methods, and it wasn't easy. I can't recall if she tried any herbal medications, tonics, shark oil etc. It seems to me it was mostly diet and lifestyle, and she was (and presumably still is) extremely disciplined about it. She was transfusion dependant for quite a while too, during which time she had some bad reactions to certain donors' blood products, and built up quite an iron overload. Her platelets actually got down to zero at one point, and she said she could actually sit and watch the bruises appear on her skin without her doing anything to prompt them! If I recall correctly, it seems like it may have been a couple of years before she started to see improvements. The whole process would probably have scared most people into going the conventional medical route, but her feeling was that she'd rather die than take immune suppressants.

My own feeling is that if you feel that strongly about it, then it's your choice to make, but if you aren't prepared to dedicate yourself to it completely, it may not be the best course for you. I don't know of anyone who just took some natural remedy and had things miraculously turn around for them. Marla did her research and became extremely knowledgeable about nutrition, AA and all of the available treatment options. She wouldn't take something unless there was a sound medical basis for it, and basically was willing to use herself as a guinea pig. I wish she still had her website up and running. I don't like speaking for her, and I don't think she'd like it much either.
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-Lisa, husband Ken age 60 dx SAA 7/04, dx hypo MDS 1/06 w/finding of trisomy 8; 2 ATGs, partial remission, still using cyclosporine

Last edited by Lisa V : Fri Jul 27, 2012 at 07:47 PM. Reason: thread moved to appropriate section
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  #11  
Old Wed Jul 18, 2012, 02:07 PM
Marlene Marlene is offline
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Hi Norma,

Just read your signature line and saw your son has relapsed. So sorry to hear this. I hope they can reverse that without too much trouble.

Marlene
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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 January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #12  
Old Wed Jul 18, 2012, 10:43 PM
tom30 tom30 is offline
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I believe this is the Marla being referenced, her old Web site with her AA details can be found here.. http://goatrevolution.com/marlakins/
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Tom- 62 yrs old, dx-eosinophilic fasciitis 2004, 1 yr prednisone resolves EF- now low counts, HGB has been ok... EF has been associated with MDS along with AA.
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  #13  
Old Sat Jul 21, 2012, 08:13 PM
Lisa V Lisa V is offline
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Yes, thanks for finding that, Tom! I thought she'd taken it down.
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-Lisa, husband Ken age 60 dx SAA 7/04, dx hypo MDS 1/06 w/finding of trisomy 8; 2 ATGs, partial remission, still using cyclosporine
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  #14  
Old Thu Jul 26, 2012, 04:05 PM
Lbrown Lbrown is offline
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Thanks for posting that. I'm on an alternative treatment myself (it does use drugs, just not IST). I have gone the conventional route and it didn't work for me, so I will be reading her story. Much appreciated!

Deb
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  #15  
Old Fri Jul 27, 2012, 05:45 AM
NLJabbari NLJabbari is offline
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Hi Marlene, yes unfortunately Yashar relapsed and I'm somewhat confused with this whole "relapse" thing. In hindsight, his counts had dropped a couple of years ago and his Hematologist at the time (Pedi Medicine) boosted his CsA really high (600mg 2X) and this seemed to stop the downward spiral of his counts rather quickly. His counts would rise slightly, but not to original numbers. They would level off and his doctor would then bring his CsA dose back down to within a therapeutic range. Yashar could maintain his numbers, but is very sensitive even to the slightest wean. Prior to the relapse, he was on 200mg 2X daily for about a year.

As it so happens, this past May his Pedi Hemo Dr. retired for good and it couldn't have happened at a worst time. Relapse had not been confirmed, but we knew his numbers had dropped ( Hgb: 7.3, Plt: 66, WBC: 6.5) Mainly his Hgb and plts dropped. He was then transferred to Adult Med. where the dx of "relapse" was made. So,... not only are we dealing with relapse, but are dealing with a new doctor too. She, ordered a BMB to get a clear picture of what's going on w/Yashar's bonemarrow. She did say that his cellularity was at around 25%. She then increased his CsA dose to 300mg 2X daily and it seems like his numbers are once again stabilizing. His Hgb. is slowly creeping up, but he has had 3 PRBC transfusions since May...they are getting further apart though. His platelets haven't moved from around 66K and his WBC and ANC are Normal. The doctor had scheduled Yashar for a visit with the Bone Marrow Transplant Team at Stanford and they are currently searching for a MUdonor. She really seems to be pushing BMT (She gave us the whole lecture of why this choice was best)....but, I think we should wait a little to see what happens. We're also considering another round of ATG, but rabbit this time; since Yashar had Horse the first time around. Yashar is just tired of dealing with all the Ups and Downs of AA. He has expressed that if a "good donor match" is found for him; he wants to go that route.

We have a lot to think about...just hope Yashar continues to be semi-stable and actually feeling well.

Thanks for asking Marlene...
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06/2004 my son was dx with SAA at the age of 10. No sibling BM match. He underwent ATG (H)/CsA. Relapsed 05/12 & dx'ed w/PNH. Currently in wait/see mode for Solaris as he is asymptomatic...
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  #16  
Old Fri Jul 27, 2012, 09:04 AM
Marlene Marlene is offline
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Hi Norma,

Since you are considering a MUD, you may want to connect with Johns Hopkins. They have been doing BMTs followed by HiCY to prevent GVHD. I think they've had some good success with that approach. You may want to ask your doc to contact Dr. Brodsky and speak to him about it. There are so many protocols out there that I cannot even imagine how settle on one over another.

I'm sure you're also looking into the HIV drug article you posted. That sounds promising too.

Marlene
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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 January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #17  
Old Sat Jul 28, 2012, 04:36 AM
NLJabbari NLJabbari is offline
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Hi Marlene, I do have John Hopkins in the back of my mind and I'm currently researching options. I'm following a couple of BMT patient's journals to compare protocols, outcomes, etc... I recalled reading that you had mentioned something about JH and the use of Cytoxin post BMT to prevent GVHD. I meant to look deeper into that, but as you can imagine this all becomes very overwhelming and sometimes I just have to back off. I keep in mind that we are fortunate that things are stable for the time being, but of course that all could change quickly.

Stanford has offered us (Yashar) to participate in a study: (Fludarabine-based Conditioning for Allogeneic Marrow Transplantation From HLA-Compatible Unrelated Donors in SAA) Preconditioning drugs: Fludarabine, Cyclophosphamide for 1 or 2 days TBD, Antithymocyte, plus 1 day full body irradiation.
I'm not sure why I get this gut-feeling that I'm not "feeling" this protocol. It makes me very uneasy...of course we don't have to agree to participate, but I'm not really sure what the standard protocol entails otherwise. I really do have to either call them back to talk to someone or make another appointment to ask more questions. Our initial appointment with the transplant doctor didn't go quite as well as I'd hoped. It seems that even though I'm officially Yashar's "Medical Agent" as he has signed an Advance Directive stating that he wants all "medical discussions" to be discussed with me. Instead, the doctors insist on talking with him! Honestly, Yashar really doesn't want to handle this himself and I don't blame him. Seems like all discussions go in one ear and out the other. It's just how he copes, I guess. Anyway, the doctor didn't seem to like that I was doing all the questioning and even asked me to refrain from questions until she was completely done explaining what she had to explain (BMT stuff). We left the appointment feeling that we still had questions to ask...the "standard" protocol was the main question I didn't have answered.

BTW, is Cytoxan and Cyclophosphamide the same drug? Thanks!
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06/2004 my son was dx with SAA at the age of 10. No sibling BM match. He underwent ATG (H)/CsA. Relapsed 05/12 & dx'ed w/PNH. Currently in wait/see mode for Solaris as he is asymptomatic...
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  #18  
Old Sat Jul 28, 2012, 10:23 AM
Marlene Marlene is offline
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Yes they are one in the same.

Figuring out BMT the protocol would be very overwhelming. I too would not be feeling that protocol with Full Body Radiation. Since Yashar is stable, this is the best time to explore the options.

I do think finding the right doctor for you is an important part of the treatment and sometimes, it takes a couple of appointments to establish the relationship.

Good luck with all this.
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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 January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #19  
Old Thu Oct 18, 2012, 05:03 PM
glitterandlace glitterandlace is offline
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Marla has been transfusion free for 11 years now,,, I sometimes talk to her and she is helping me tremendously with my alternative approach to AA. It took her 18 months to stabilize and another 6 months see improvements in her counts after that. There is also another guy named Bruce who cured himself alternatively,,, and a guy named Roger,,, and another named Ashkay, and another named Gabriel. Gabriels dad Daniel answered another question on the alternative forums here, that is how I got a hold of him and he gave me advice. Marlas web site has been posted above,,, but here is Bruces-
He also has a newer more recent web site but I can't find it right now,,, but here is his old one.
http://aplastic.livejournal.com/

Last edited by glitterandlace : Fri Oct 19, 2012 at 05:58 AM.
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  #20  
Old Thu Oct 25, 2012, 07:29 AM
fibogann fibogann is offline
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My son has been off all medications for very severe AA after ATG with cyclosporine for more than 10 years now, with the help of the Blood Tonic and Blood Well and shark liver oil. The only supplement he is taking now is the shark liver oil. Those who are interested in these alternative and supplementary methods may like to look for some of my past posts. And yes, Marla Brown's story was one that really encourages my heart from the start....so thank you.
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Peter Lim, Dad to Stan, age 17 at time of dx Feb 2002VSAA; tx. ATG, cyclosporine, predisone; alternative herbal supplm & shark liver oil, off all meds 5/2002 normal blood counts. Only on shark liver oil.
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  #21  
Old Mon Oct 29, 2012, 03:43 PM
Lulu Lulu is offline
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alternatives

I have been diagnosed with Fibrotic MDS - RAEB (10% marrow blasts, anaemia and slightly low white cell count). Started shark liver oil a couple of months ago and my white cell count has risen to normal levels. Am also taking a Chinese herbal mixture (no idea what is in it), high dose Vitamin K, B12, D3, beta glucan, IP6 and wheatgrass.

I am wary of posting here saying how well I feel, in case I 'jinx' it, but my last blood test showed my Hg had gone up. I am sure it is due to the supplements I am taking, as I felt so rotten beforehand and Hg kept going down. My haematologist is a complete sceptic and keeps talking about various drugs they could try, but I don't like the sound of any of them. Shame these supplements are so expensive though!
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  #22  
Old Tue Oct 30, 2012, 12:36 PM
Neil Cuadra Neil Cuadra is offline
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Originally Posted by glitterandlace View Post
There is also another guy named Bruce who cured himself alternatively,,, and a guy named Roger,,, and another named Ashkay, and another named Gabriel. Gabriels dad Daniel answered another question on the alternative forums here, that is how I got a hold of him and he gave me advice. Marlas web site has been posted above,,, but here is Bruces-
He also has a newer more recent web site but I can't find it right now,,, but here is his old one.
http://aplastic.livejournal.com/
Bruce Lande's current site is http://aplasticcentral.com/wordpress/ and is still partially under construction as he migrates content from the origial Aplastic Central system.
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