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Alternative Treatments Complementary and alternative medicine; natural and holistic approaches

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  #1  
Old Sun Aug 30, 2009, 05:50 PM
kcbabe kcbabe is offline
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Anyone use Meditation & Visualization?

My brother's on his 5th day of ATG and serum sickness in the form of very high fever. Hard to see him suffering like this. Wondering if anyone has used meditation & visualization in managing their AA? Helping to overcome serum sickness symptoms?

Thanks.
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Reeran, sister of Richard age 49; diagnosed AA 8/09; ATG 8/09 at UCLA Ronald Reagan, now on Cyclosporene 175mg 2/day and weaning off Prednisone from 80mg down.
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  #2  
Old Mon Aug 31, 2009, 09:21 AM
Marlene Marlene is offline
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John used meditation before and after treatment. The meditation helped with the neuropathies to calm the pain. He had a difficult time staying awake to meditate though. Unfortunately, he was so out of it mentally during treatment that he could not focus enough to meditate.

He's done a lot of complementary therapies after his treatment to assist in his healing.
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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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  #3  
Old Wed Sep 2, 2009, 01:59 AM
Steven Steven is offline
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Personally I think meditation/visualization can help. Studies do show that people with a more optimistic outlook or more relaxed state of mind have stronger immune systems.

Even without meditating, it's relatively simple to just tell or will yourself to get better, or imagine your body create more healthy blood every night before you go to sleep. It definitely couldn't hurt.
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Son of 70 yo; diagnosed MDS 11/2008, treated with vidaza; diagnosed AA 3/2009, treated with ATG, cyclosporine and exjade; rediagnosed MDS 7/2009, restarted with 2 cycles of vidaza, but currently halted treatment of both vidaza and exjade due to severe effects from the drugs.
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  #4  
Old Wed Sep 2, 2009, 03:18 PM
kcbabe kcbabe is offline
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Hi Marlene,
Could you discuss what therapies & at what points in recovery John used after his treatment and the results?

My brother will be released today or tomorrow and I'd like to use supportive alternate therapies for him. He's agreed to continue with meditation. I've been using holistic, naturopathic and homepathic remedies for many yrs with my family. Hoping to help Richard's recovery in any way.
Thank you.

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Originally Posted by Marlene View Post
John used meditation before and after treatment. The meditation helped with the neuropathies to calm the pain. He had a difficult time staying awake to meditate though. Unfortunately, he was so out of it mentally during treatment that he could not focus enough to meditate.

He's done a lot of complementary therapies after his treatment to assist in his healing.
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Reeran, sister of Richard age 49; diagnosed AA 8/09; ATG 8/09 at UCLA Ronald Reagan, now on Cyclosporene 175mg 2/day and weaning off Prednisone from 80mg down.
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  #5  
Old Wed Sep 2, 2009, 04:50 PM
Marlene Marlene is offline
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This will be a challenge....

I should have kept a better record of everything but I didn't and will have to rely on my memory.

First, John's treatment was very different from your brother's but the premise to heal still holds. Everything we did was to help his body heal. The treatment took an unexpected and difficult toll on him so he had many things in need of healing besides his bone marrow. John's recovery was very slow. His doc at Hopkins was fully supportive of any alternative treatment we wanted to do and the treatment protocol he did for the SAA was done over a 4 day period so nothing we did conflicted with it. After that, it was all about supportive treatments, recovery and getting the body to respond. I also found that you need to focus on the entire person and not just an organ or disease because nothing is isolated. SAA is a symptom of something else gone wrong and it can vary from person to person. In John's case, there's not one vitamin, herb, medicine, etc that was gonna be his miracle. The treatment stopped the disease but there was nothing they could offer except time to help his bone marrow recover. For others, the treatment was their miracle. They responded and recovered their counts according to schedule and did not drastically change their life style. John was clearly outside the "bell curve".

We did a lot with diet, nutrition and supplements. Even though we ate healthy organic food before the SAA, we found we needed to modify our diet even more to ensure all foods were nutrient rich and added in a lot more protein and healthy fats. Treatment pretty much depleted any nutrient reserves John had and he had more of a need for anti-oxidants and the B vitamins. He was pretty toxic from all the drugs and nausea remained a problem for quite awhile making it a bit of a challenge. We juiced, did whey protein shakes, made bone broths for the minerals and probably more than I can remember.

So our first step to recovery was FOOD and supplements. (along with blood transfusion and neupogen for white cell growth) We also did what we could to eliminate exposure to toxins. I no longer put down any fertilizers or use insecticide unless it's an extreme case but never in the house. All our personal care product are natural, meaning no petro chemicals, sls, phalates, floride etc. I have a filter on our shower and use filtered water.

We started this once we got home from Hopkins....he was there for four and half months. So that's the foundation for healing and then we incorporated other modalities to address specific issues as it related to overall healing and quality of life.

I'll stop here for now and do a second post regarding specific alternative treatments. In the meantime, please feel free to ask any questions.

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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  #6  
Old Thu Sep 3, 2009, 10:12 AM
Marlene Marlene is offline
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Healing nerves & bladder

First...the bladder. John's bladder was a mess from the cytoxan and the BK virus. He was bleeding a lot from his bladder and nothing helped. They transfused platelets and were able keep them above 50K but the bladder just wouldn't heal. Six months out from treatment and finally it stopped. We attributed this to introduction of cranberries. It was November and cranberries were in season. I kind of went nuts....cranberry chutney, cranberry tart, cranberry jam... you get the picture. Well, to our surprise, his bladder finally healed within 3 weeks of eating these precious berries. There was no change in white count or platelet count during this time and he was not on any other drugs for it. I new, but apparently forgot, cranberries were good for the bladder. I just wish I remembered this earlier.

Next item to tackle was the nerve damage. Not only did he get shingles, but he had peripheral nerve damage, mostly to his feet. He was at 8 or 9 on the pain scale. He was miserable and the only thing they could offer was an off-label, anti-siezure med which was not an option for John. He did not want his brain to shut down again from meds. We approached this with nutritional supplements. When I investigate vitamins for the nerves, I found that they were also good for the blood and bone marrow. The main focus were B vitamins, esp B12. I then introduced alpha lipoic acid. Within 3 weeks, it brought his pain level down to a 4 or 5. This was significant. We did this about 8 months out from treatment. Then we used a device called the Rebuilder which is a foot bath with electrical stimulation. Bingo....this brought the pain level down to about a 2 immediately. We used this at about 14 months out from treatment. So we pretty much saw a direct relationship between the ALA and the Rebuilder and his pain.

Finally...at some point, he went to a Chiropractor. The first treatment helped his feet, his gait and balance. All are off when you have PN and the risk of falling is high, which he did and broke his wrist. He walked so much better after his first treatment. His breathing also improved after the doc adjusted a rib that was out of place. I know some of this sounds odd and like minor stuff, but it all contributes to overall healing.

We continue to work on the feet....reflexology and essentials oil have been very good treatments also. And 7 years out, his feet are still healing. Nerves take a really long time to heal. You also have nerves in your bone marrow.

Next post will address what we did with acupuncture and herbs.

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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  #7  
Old Wed Sep 9, 2009, 02:13 AM
kcbabe kcbabe is offline
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Thank you to take the time to reply

Hi Marlene,
Sorry to read about John's slow recovery. I can't imagine 4 1/2 mos in a hopsital. As I'm finding with my brother, it's sometimes harder on those around the patient. You must have gone through so much.

My brother has started recovery using food and supplements, too. Everything in his house is natural or organic, no chemicals, good air purifier. Thinking of changing his carpets to a hard material. Didn't put a filter on the apt shower. Do you think that's really important?

After reading about your B vitamins I had my brother start taking them along with a multivitamin. You didn't mention a multi. Did John take those?

I'm planning to take my brother to Dr. Huy Hoang, and associate of Dr. Ba's that Peter Lim talked about. Fortunately he's near us. As well as being a master herbalist, Dr. Huy is also an acupuncturist. I am eager to hear how you incorporated that & herbs into John's recovery. Please post when you get the chance. Thank you again for sharing your experience.

Reeran
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Reeran, sister of Richard age 49; diagnosed AA 8/09; ATG 8/09 at UCLA Ronald Reagan, now on Cyclosporene 175mg 2/day and weaning off Prednisone from 80mg down.
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  #8  
Old Wed Sep 9, 2009, 04:36 PM
Marlene Marlene is offline
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I do feel the shower filter is important especially to your lungs. The chlorine, in vapor form is worse than drinking it. Your skin will also feel better for it. Less drying especially in the winter months.

John did take a multi-vitamin. We constantly modified the various supplements depending on what we were doing. Key nutrients for blood are B12 (the methyl form is best), Folic acid, B6 (p-5-p form is best) plus a general B complex. A good omega 3/flax seed oil and probiotics have been constant through out. Zinc and vitamin D for a strong and balanced immune system.

At one point, we found he was deficient in vitamin c and B5; and zinc was borderline.

Regarding the acupuncture:

John started back up with Traditional Chinese Medicine (TCM) about one year after his treatment. He still had very low platelets (4K) and the nerve pain was still a problem so he did not do the needles. Instead, our acupuncturist utilized various energetic modalities which included moxa, homeopathy, laser light acupuncture, patent herbs and some other bio-energetic medicines. His counts did not improve but his energy did. Also, she would do an annual protocol to address “Wei Chi” to strengthen and protect his outer chi during cold and flu season. This worked very well for him. He did this two years in a row and never caught a cold or flu. And this was when his ANC was around .8 .


I cannot remember how long he did the TCM but at some point he did stop. He did start up again in 2007 but with a Chinese doc who studied under one of the top Chinese doc in China who was doing a clinical trial treating SAA patients with a combo of Eastern (TCM) and Western (ATG/Cyclo) medicine. This doc was very skilled with herbs. This time, John did acupuncture along with herbs which we brewed. He did the herbs for six month but saw no change in his counts so he stopped them. The herbs are adjusted weekly according to your needs and the expectation is that if they are going to work, you will start seeing some movement early on. The Acupuncture really helped his fatigue and overall feeling of wellbeing. He continued with this for about six more months but stopped. It got to be too much to do with working full time. The time-off he needed each week was lot.

Bottom line....there are definitely benefits to TCM, but in John’s case, none that effected blood counts. All you can do is try it and see if it works for you. It’s pretty much like any treatment... It doesn’t work for everyone.

You may want to check out another SAA’ers website. She chose not to do ATG and was able to recover using natural methods. I know she too tried the chinese herbs without success. Here’s a link to her blog: http://www.geocities.com/marlakins/index.html (scroll down to “Alternative treatment used for my AA”

Hope this helps....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 January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #9  
Old Sat Sep 12, 2009, 02:50 AM
kcbabe kcbabe is offline
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Hi Marlene,

Did you get the dr's approval for all of this, especially the tcm herbs? Richard's dr already nixed the supplements that I want him to try. Formulating a game plan for on how to convince the Dr. to consider it. Another person told me to suggest passing the ingredients to a pharmacist and get them to ok for no drug interaction with cyclosporine. The herbalist has already told me that there is no interaction and I tend to believe him since he seems to have treated many AA patients with them.

How did you find that John was deficient in the particular vitamins? Did you visit an ND?

Thanks for the link. Checked out her story. Brave woman. It's incredible that people have maintained their blood levels using natural approaches.

Your information has been helpful and thank you for sharing it with everyone.

Reeran
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Reeran, sister of Richard age 49; diagnosed AA 8/09; ATG 8/09 at UCLA Ronald Reagan, now on Cyclosporene 175mg 2/day and weaning off Prednisone from 80mg down.
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  #10  
Old Sat Sep 12, 2009, 10:57 AM
Marlene Marlene is offline
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John was not on cyclo. I believe the docs concern is that supplements can interfere with maintaining proper levels of the drug in the blood which should be a non-issue since they must monitor it anyway and adjust the dosage accordingly. But without knowing his reasons this is just a guess.

The doctor should be able to tell you why he doesn't want him to take supplements. And he should be able to provide the back-up data to prove what he's saying. Many times, it's because they don't have enough knowledge to feel comfortable enough to say "yes".

John's Doc at Hopkins told us we could to any complementary approaches we wanted. He was not at all threatened by our approach. There was one time he told us we may want to stop the fish oil to see if it was holding back his platelets. He said maybe switch to flax oil instead. So we did stop supplementing with fish oil but found there was no change in his platelets and John went back on it.

We did tell his docs for some things and continue to share the supplements John is taking with both. But I don't think we ever asked permission. We didn't say anything about the herbs because we knew, based on past experience, that his local doc would basically say he has no experience with them and therefore cannot recommend them. So what's the point. Most of the chinese herbs and for that matter western herbs, are food grade and I know the ones he took, included things like tangerine peel, goji berries, mushroom, licorice root, etc. There are more "medicinal' herbs but his chinese doc does not use them. Also, many herbs are high in vitamins and minerals, a good way to get them since they are natural and combined the way nature intended.

Both docs knew John did chiropractic care and acupuncture. The only concern early on by his local doc was risk of bleeding and infection. But John did not do needles until his platelet got up to 30K and his ANC was above 1. Other than that, they were supportive. In fact, his doc at Hopkins suggested B12 early on for the nerve damage.

We worked with a nutritionist (PHD type) about 1 year out of treatment and she used hair analysis. She wanted to do blood but John did not have enough white cells to run the test.

In 2006 we did go to doctor of functional medicine to get an assessment and got some additional info but it was incomplete. We dropped him because his agenda was not in line with ours. I belong to Life Extension Foundation and ordered some tests from them. Also, his chiropractor assesses them using muscle testing, Applied Kinesiology and other stuff.

I can go back and look up some the of the labs we used and you may be able to go directly to them for testing but his doc can do some of the basic ones like B12, B6, folate, zinc, copper,D, etc. If he does, you need to get a copy of the results because most docs will tell that a low normal B12 reading good. That is not the case especially for someone with blood or nerve disorders. For John, early on, we pretty much knew his entire nutritional status was poor. The drugs took such a heavy toll on him and depleted him so it was pretty obvious a general, all encompassing program would help.

Many docs hold to the belief that if you eat a balanced diet, you would then get adequate nutrition. But our food is not what it used to be and more people eat processed food which is harmful. Our meat has antibiotics and hormones, high fructose corn syrup is in most processed food, and contain many preservatives/chemicals. Our bodies are over-burdened because we are exposed to so much. All of this effects how well our bodies function.


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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  #11  
Old Sat Sep 12, 2009, 12:59 PM
Hopeful Hopeful is offline
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Hi Reeran,

I'd be really cautious about using supplements at this point, especially if his doctor is against it. ATG with Cyclosporine has a long track record for the successful treatment of Aplastic Anemia.

Cyclosporine is a very complex drug and there are many unknowns as to why and how it works. The absorption profile varies for different individuals. You really don't want to risk interfering with its absorption and the possibility that your brother may be a responder! Your brother is very early in his treatment, and patience is key at this point.

Dr. Paquette is an expert in this field. Your brother is in good hands.
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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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  #12  
Old Sun May 27, 2012, 03:14 AM
tutuAA tutuAA is offline
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Quote:
Originally Posted by kcbabe View Post
Hi Marlene,
Sorry to read about John's slow recovery. I can't imagine 4 1/2 mos in a hopsital. As I'm finding with my brother, it's sometimes harder on those around the patient. You must have gone through so much.

My brother has started recovery using food and supplements, too. Everything in his house is natural or organic, no chemicals, good air purifier. Thinking of changing his carpets to a hard material. Didn't put a filter on the apt shower. Do you think that's really important?

After reading about your B vitamins I had my brother start taking them along with a multivitamin. You didn't mention a multi. Did John take those?

I'm planning to take my brother to Dr. Huy Hoang, and associate of Dr. Ba's that Peter Lim talked about. Fortunately he's near us. As well as being a master herbalist, Dr. Huy is also an acupuncturist. I am eager to hear how you incorporated that & herbs into John's recovery. Please post when you get the chance. Thank you again for sharing your experience.

Reeran
Hi Reeran,

How is your brother doing? Did he take blood well and blood tonic after he saw Dr.Huy? Is the herbs working for him? Do you know if Dr. Huy will do long distant treatment? My nephew just got dx with SAA with low platetes at 3K. I'm looking for a supplement treatment for him. Can you send me the contact information of Dr. Huy?

Thanks
Sharon
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