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Holistic therapies 10 years 2 months ago #27508

  • ddinap@aol.com
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Has anyone had any luck with Holistic drs or therapies for ITP? I just finished Rituxan last month and currently my platelets are stable, but I am thinking that if there is something I could eat or a supplement I could take, or even something I could avoid eating, that might help, then I am willing to check it out. I had a terrible experience with Rituxan and would like to avoid doing any treatment like that again for a long time. And I also want to be off prednisone (which I have now been on for close to 9 months, and am finally tampering off of it).

I am not looking for a miracle cure, since I dont think that exists, I just thought if there was a supplament or anything I could take that may help and was more natural that I would look into it. I have an appointment with a local holistic doc this week, but was wondering if anyone here has had any luck with supplements or foods that may have helped.

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Holistic therapies 10 years 2 months ago #27510

  • eklein
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Ann has a list of the 70+ foods and related items that members have claimed will aid ITP. She's posted it on several other threads and will probably post it here - Ann? I can only ever remember blueberris and celery, and rubbing some kind of oil on the skin near your spleen.

If you get normal counts after Rituxan you have a good chance of a remission lasting years.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Holistic therapies 10 years 2 months ago #27515

  • Ann
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Here you go.. 73 potential cures in alphabetical order.

Achillea Millefolium (Yarrow)
Acupuncture
Alpha lipoic acid
Ambrosia tablets
Anamu
Asparagus
Astragalus
Avoid processed foods
Avoid stress
Ayurvedic herbs
Beet juice
Bergamot oil
Blood stim liquescence
Bloodwell herbs
Blueberries
Castor oil massaged into spleen area
Cayenne pepper
Celery
Chamomile tisane
Chickens' feet broth
Chinese herbs
Coconut oil
Colloidal silver
Colostrum
Copper
Dandelion flowers
Ear massage
Essential oils
Euphorbia hirta
Fasting
Ginkgo Biloba
Gluten free diet
Glyconutrients
Goji juice
Helminthic therapy
Hema-Plex multivitamins
Holy Basil
Homeopathy
Hornbeam
Hulda Clark's zapper
Limu juice
Maharishi Amrit Kalash nectar
Manuka honey
Meditation
Multivitamins
Nettle tea
Noni
Olive leaf extract
OML Plus (Omnilife)
Orange juice
Organic meat
Papaya leaf extract
Peanut skins
Peppermint tisane
Phycocyanin
Physical exercise
Plantago major
Pomegranate
Prayer
Probiotics
Qigong
Reiki
Revigor
Spirulina
Swedish bitters
Tai chi
Transfer factor
Vascuzyme enzymes
Vitamin B12
Vitamin C
Vitamin D
Vitamin K
Wheat grass juice
The following user(s) said Thank You: kym

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Holistic therapies 10 years 2 months ago #27518

  • ddinap@aol.com
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that is quite the list! thank you! intersting that i also have a B-12 deficiency, and that is one of the items on the list.

my platelets are currently hovering around 115. they were up to 180, but then dropped to 115 last week. they have been there for about 10 days. i go for more blood tomorrow to see if they are still there, since i am tapering off the prednisone now. i am hoping they stay and i am in remission.

i just made an appointment with 2 different holistic doctors in my area to see if they have any suggestions. i am willing to try anything that won't hurt me if it might help me stay in the 115 range as long as possible.

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Holistic therapies 10 years 2 months ago #27663

  • Nitin
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Ann has quiet a list there, and very interesting indeed...
I would like to add Yoga to it.
I myself am taking Homeopathy treatment and doing Yoga in the morning..
My doc is also ok with Homeo treatment on the side....
I hope to have normal count after my Rituxan treatment and will continue
with these alt therapies...

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Holistic therapies 10 years 1 month ago #28758

  • ddinap@aol.com
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Went to see an integrative dr last week. She is a medical dr that specializes in nutritional needs as well (which most medical drs do not do). She said she has had luck with people with autoimmune diseases going on gluten free diets. She says tThere is something in the gluten and how it is now processed that can irritate the immune system and cause an imflammatory response in the body, causing the immune system to attack things it is not supposed to, like platelets.

So, i have been gluten free for a week now nad going back in a month to see if it has had any effect. I figure why not give it a try. I honestly think if someone told me eating dog food would help me not have to go through what I went through this year again then I woudl try it!

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Holistic therapies 10 years 1 month ago #28781

  • firkins
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DD, did your doctor say gluten free is good even for people who are not celiac? I've wondered about t his for my duagh4eer but, glory, the kid has never had a great palette (milk allergy as a baby which often morphs into being a picky eater) and she just LOVES pasta. I don't know how I'd get her off gluten. Had the celiac blood test. Negative, Which I know can mean nothing. Interested in hearing how it goes for you. good luck!
Firkins (mom of Zoe (15) and Mia (13). Mia has ITP. Diagnosed 3/2012.

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Holistic therapies 10 years 1 month ago #28785

  • ddinap@aol.com
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Sounds like you are in the Boston area like me. I can get you the name of the Dr i saw about the gluten thing. She is at VIsions Health Care in Wellesley. Not sure where you are located, but if you are going to MGH you can't be too far. I see a hematologist in RI since I am in southern MA.

The dr I saw in Wellesley is a medical dr who specializes in how nutrition can help heal the body along wiht medicine. I was refered there by a friend. The dr said gluten can cause an inflammatory response in the body, and cause havoc on your immune system, causing it ti attack things it is not supposed to, like your platelets in the case of ITP. I was never much of a believer in alternative medicine until this year, and I keep hearing about all these people with diseases that I had never even heard of when I was a kid, so I am starting to be a believer.

She told me to try gluten free for at least a month to see if it helped. We shall see. I figure it is a small sacrifice to make if it works. I also do not have celiac. I will keep you posted on how it goes. If you want the drs name, let me know.

I was also hesitant to have my spleen removed. After a few IVIG's i had the Rituxan. I reacted terribly to it. I was a mess for the entire month I was on it. I had chemo like reactions. If I had to do it again, I would probably get my spleen taken out instead! I am just glad the Rituxan worked.

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Holistic therapies 10 years 1 month ago #28786

  • firkins
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Hi DD,
I'm in the town next to wellesley actually. We have a family nutritionist actually because my older daughter has struggled with eating issues (now fine, thankfully) and she has been great. I also have an autoimmune disease -- hashimoto's -- far preferable to ITP but a long history of family a/i diseases so I would love to look into what you learned. I will look up the practice. If you could send me the doctor's name that would be great! Really glad the rituxan worked and hope it keeps doing so.
Best, Firkins
Firkins (mom of Zoe (15) and Mia (13). Mia has ITP. Diagnosed 3/2012.

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Holistic therapies 10 years 1 month ago #28806

  • ddinap@aol.com
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The drs name is Dr Margaret Gold and the number there is: 781-431-1333
Here is there website: www.visionshealthcare.com/

I have multiple auto immune diseases, the ITP being the most bothersome. I have the same thyroid condition as you, a b-12 deficiency, and i also had arthritis when I was a small child. All of them came on after either having the stomach bug or some other nasty virus where my immune system attacked the wrong thing!

Let me know how it turns out! I figure it can't hurt to try anything diet related. It may or may not help, but if it does, it would be worth it to me.

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