Posted a bit about my situation on another thread (www.pdsa.org/discussion-groups/7-treatment-general/9152-steroidsrituxannext-n-plate-splenectomy.html). I'm thinking about going the traditional chinese medicine route after talking with a practitioner who a) says he has had success with ITP patients in the past, and b) made a lot of sense to me in terms of the TCM approach to helping reset the immune system (rather than just treating the symptoms of the problem being created by the immune system).
Anyway, I read the article in a post below about TCM, but didn't see any response about others' experience with it. If anyone has any info to share, I'd appreciate it. Definitely thinking twice about the recommendation to get a splenectomy, but am also a little nervous (as is my doctor) about continuing for a long time with a count <10k.
Of course. That's why I'm looking for people with experiences to share, positive or negative.
I've certainly found a lot of information about splenectomy. And at this point, the irreversible nature of it, the potential post-splenectomy issues people seem to have, and the fact that there's a decent chance (33%) it won't work, have me thinking about other options before I go that route.
Seems like there's some positive information out there on TCM. Definitely like the angle TCM and homeopathy take on trying to fix the problem, rather than just addressing the symptoms. But does it work? What are the risks? Anyone with experiences to share?
Here's some sample research results - I prefer this to anecdotal reports since there are larger sample groups and controlled studies - I stuck with scientific journals rather than wikipedia type sources, searched on 'traditional chinese medicine risks'. I think you'd need to know what specific herbs the practitioner wants to use and then look those up for posisble toxicity etc. A few universities are studing alternative medical therapies and publish good research - I think you'll find a lot of information is available.
Alan Bensoussan, MSc(Res); Stephen P. Myers, ND, BMed, PhD; Anne-Louise Carlton, BSc, MBA
Arch Fam Med. 2000;9:1071-1078.
Objective To investigate the nature and frequency of adverse events that occur as a result of the practice of traditional Chinese medicine (acupuncture and Chinese herbal medicine) in Australia.
Methods Data on adverse events were obtained as part of a comprehensive survey of all occupational health groups, government-registered and unregistered, who practiced traditional Chinese medicine or 1 of its main modalities.
Results Practitioners reported numerous adverse events arising from the application of acupuncture (including fainting, nausea and vomiting, and increased pain), or the consumption of Chinese herbal medicines (including direct toxic effects and allergic reactions). Practitioners experienced an average of 1 adverse event every 8 to 9 months of full-time practice or 1 adverse event for every 633 consultations. The mean adverse event rate of nonmedical practitioners was less than half the mean adverse event rate of medical practitioners.
Conclusions The practices of acupuncture and Chinese herbal medicine are not risk-free and fatalities have occurred. Variation in adverse event rates between medical and nonmedical practitioners may reflect differences in relevant education or different reporting behaviors. These data represent the first step in the evaluation of adverse event rates in traditional Chinese medicine.
Aconitum in traditional Chinese medicine: a valuable drug or an unpredictable risk?
Singhuber J, Zhu M, Prinz S, Kopp B.
Department of Pharmacognosy, University of Vienna, Vienna, Austria.
Aconitum species have been used in China as an essential drug in Traditional Chinese Medicine (TCM) for 2000 years. Reviewing the clinical application of Aconitum, their pharmacological effects, toxicity and detoxifying measures, herb-herb interactions, clinical taboos, famous herbal formulas, traditional and current herbal processing methods based upon a wide range of literature investigations serve as a case study to explore the multidisciplinary implications of botanicals used in TCM. The toxicological risk of improper usage of Aconitum remains very high, especially in countries like China, India and Japan. The toxicity of Aconitum mainly derives from the diester diterpene alkaloids (DDAs) including aconitine (AC), mesaconitine (MA) and hypaconitine (HA). They can be decomposed into less or non-toxic derivatives through Chinese traditional processing methods (Paozhi), which play an essential role in detoxification. Using Paozhi, the three main forms of processed aconite -- yanfuzi, heishunpian and baifupian -- can be obtained (CPCommission, 2005). Moreover, some new processing techniques have been developed in China such as pressure-steaming. The current development of fingerprint assays, in particular HPLC, has set a good basis to conduct an appropriate quality control for TCM crude herbs and their ready-made products. Therefore, a stipulation for a maximum level of DDA content of Aconitum is highly desirable in order to guarantee the clinical safety and its low toxicity in decoctions. Newly developed HPLC methods have made the accurate and simultaneous determination and quantification of DDA content interesting.
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
Re: Traditional Chinese Medicine
12 years 1 month ago #9203
"...adverse events arising from the application of acupuncture (including fainting, nausea and vomiting, and increased pain)..."
Any reason given for these adverse events - like maybe the people don't like needles and probably shouldn't have been stuck in the first place?
I have been having acupuncture for a number of years now - not for ITP but neuropathy. Can't recall how many needles are placed, it can change depending on what I tell her my symptoms are - but at least 20+, so if someone doesn't like needles acupuncture is not for them.
I think if someone is going to use TCM, acupuncture, acupressure, heck even homeopathy, they need to make sure the practioner is legit & has had proper training etc.
Re: Traditional Chinese Medicine
12 years 1 month ago #9218
I have experienced using both TCM and homeopathy now for two different diseases. We used TCM for MDS/AML and homeopathy for ITP and a range of other health issues (including another AI besides ITP). Hands down, the homeopathy is far more effective, easier, and faster. While it still takes several months for things to kick in, once it does, it's a drastic change. The TCM, while it definately supported the person's body and gave them 2yrs they wouldn't have had otherwise, it did not seem to do anything towards healing the spleen (which was a real issue in this particular case). In TCM the spleen involves multiple organs - not just the spleen.
I personally used TCM trying to heal an AI and it was not successful. Used it for two years. However, in a few months of homeopathy (even having it interrupted with a broken leg/sprained ankle) I'm already seeing the AI drastically improved. My DS's ITP is also drastically improved (almost gone).
In either case, the experience of the practioner is crucial. We did have an excellent TCM doctor (straight from China ) who also happened to be a hematologist at one time in China. We tried one homeopath for DS and got nowhere and finally connected with April from this forum. She knows what she's doing! So, as with all forms of doctors, there are good ones and bad ones. I have found word of mouth recommendations to far outweigh pulling out a phonebook in terms of success/experience.
As for toxicity, I would take the hundreds of years of TCM herbs being used long before the hundred years of drug remedies. I can appreciate that some people lean medical, but because they are picking, choosing, and looking for specific things, they will find them. However rare they might be. I would venture to say there is far more risk and danger to the drugs being used for ITP (long term and short term) then any herb used for TCM or homeopathy for that matter. For every "risk" someone could find with herbs/remedies, I can find 10 or more for any given drug. So I find that argument not even valid. Otherwise, people wouldn't be doing these drugs. It will depend if you want real life evidence (know/see/talk to people it's worked for), or a bunch of studies (tested on a small group of people) for evidence. Only you can decide that for yourself. Everyone is different.
In the end, a splenectomy is permanent and there's a solid chance it won't work. From personal experience I know homeopathy does work for ITP (and there are quite a good number from this board that it has worked for) and TCM does work for prolonging life (and others have had success with it in other ways). While I personally would go with homeopathy (cheaper, easier, faster), a person would have to not be thinking clearly to not try all other options long before ever agreeing to have body parts removed (especially one so crucial to the health of the body).
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