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My two and a half years of Chinese herbs and acupuncture

Discussion in 'Alternative Therapies' started by Jenny, Nov 27, 2014.

  1. Jenny

    Jenny Senior Member

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    Over my 32 years with ME I’ve been very hesitant to attribute any improvement or relapse to anything I’m doing at the time. This is because my most obvious pattern of symptoms has been random fluctuation: mostly it’s been impossible to figure out why I have good and bad spells.

    But I think there’s a good chance that Traditional Chinese Medicine (TCM) has helped me. When I was first ill in the 1980s I had treatment from a very skilled TCM practitioner (Giovanni Maciocia) for several years and I got back to work in the 1990s.

    But I started to get worse in 2004, after a very minor skiing accident which led to widespread pain and a diagnosis of fibromyalgia. Between 2008 and 2012 I had spells of feeling very ill and being bedridden for months on end. Even during better periods I often needed to be lying down most of the day. I could barely look after myself and was at my worst ever. Unfortunately Giovanni had moved to the US, and the TCM practitioners I found in London were of no help. I tried many other treatments (including lymphatic drainage massage from the Perrin clinic, all kinds of very expensive treatments from the Breakspear clinic, and long-term antibiotics and anti-virals) but they had no effect at all.

    On the recommendation of someone on this Board, in the summer of 2012 I started to see a Chinese doctor who practises in London and Sheffield – Dr Dan Jiang. After six months of mostly fortnightly acupuncture and twice-daily Chinese herbs I slowly began to improve. I’ve been seeing her for two and a half years now and I have long periods of feeling 90% well. I still have relapses, usually when I’ve been in contact with someone with a virus infection, but they normally only last two or three weeks at most.

    I thought I’d wait a good length of time before reporting on this, as I think you have to take a long-term view of this condition and anything you try. And I’m still fearful of suddenly getting very ill again. But most of the time my symptoms are quite mild. I still wake up feeling pretty awful, as if I’ve got a mild hangover, with muscle aches and slight depression. But these improve during the morning, and most days I lead a pretty normal life. Some days I can walk several miles.

    When I’m in a relapse, the same old distressing symptoms return, sadly very familiar to all of us, I imagine: feeling like I have bad flu, aching all over, bad headache, no appetite, gastro problems, extreme weakness, sweating and shivering, dizziness, 'wired', very fast heartbeat etc. (I would never say I have ‘fatigue’, rather the experience is of feeling terribly ill, with such utter exhaustion that, when at my worst, recovering from taking a couple of steps required sleeping for 30 minutes.) But now the symptoms aren’t as severe as they were and don’t last as long.

    It may be that my improvement would have happened anyway and has just coincided with the TCM treatment; it’s impossible to know. But a couple of times I’ve been given some milder herbs in the form of powders, rather than herbs you have to boil up, and each time I’ve regressed a bit. This, together with the fact that I improved while having TCM in the 1980s, is some evidence to suggest that the treatment may be doing something.

    Here’s a link to my practitioner’s website, which describes her practice and includes a link to an article she wrote some time ago about treating people with ME. It’s just an informal, uncontrolled study, but it shows where she’s coming from.

    http://www.jiangacu-herbconsultant.com/

    Hope this helps someone.
     
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  2. Esther12

    Esther12 Senior Member

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    I am deeply sceptical about the value of TCM for anything, and on top of there being no good evidence for it being helpful, have also read worrying reports about some of the recommended herbal treatments including some really unhealthy ingredients and contaminants.

    Having said that, it's great to hear that you're feeling better, whatever the cause of your improvement. I hope it continues for you.
     
    Jenny likes this.
  3. worldbackwards

    worldbackwards A unique snowflake

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    Hi Jenny,
    I've seen Dr. Jiang in the past and still do occasionally for acupuncture. I improved a bit under Chinese Herbs and Acupuncture, but there was no dramatic improvement, what I've found was that they enabled me to get the illness and symptoms under control and so I could steady things up and make solid progress from there. Over time, I found that Western herbs were a better fit for me, because I am very sensitive to changes in prescription and Chinese herbalists tend to like to chop and change things about, which put a bit of an extra strain on my system.

    One of the problems I found with Dr. Jiang was that, as her English is a bit ropey, it was a bit hard to get problems like this over to her. I've always felt that she was good at what she does though and that TCM is a useful way to go for treatment in general, if it is the right fit for you as a patient. Certainly, whenever I have stopped doing acupuncture or any variety of herbs for a bit, or done them less often, I have deteriorated sharply.

    Not many things talked about on this board have any solid evidence behind them, it's simply a case of finding out what works for you. I would say that people whose opinions I respect consider Dr. Jiang to be very knowledgable in the field and that the kind of stuff that makes people ill in TCM is generally not used by the people who know what they're doing. That said I'm not about to get into a 'my treatment's better than your treatment' row: the important thing is that people improve and this is something that has helped for at least two people here to varying degrees, so I'd recommend people give it a try if they've weighed up the pros and cons and it's what they want to do.
     
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  4. Dreambirdie

    Dreambirdie work in progress

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    @Jenny I'm happy to hear you are having some improvement with TCM. That's great!

    TCM is the main treatment modality I use as well. I was doing fairly well with just that until 2009, when I decided to consult doctors and take their advice. This led to a disastrous crash that I am still trying to get over.

    Though it has not cured me, TCM has definitely helped me manage my symptoms, and that in itself helps my overall energy. Acupuncture and acupressure have been very helpful. Another really good thing is that I have never been made ill by any of the herbal formulas prescribed to me by my TCM practitioners. DO NO HARM is a good way to go!
     
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  5. bertiedog

    bertiedog Senior Member

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    Acupuncture helps me everytime I have a treatment with my local Chinese doctor. I go about every 10 days - 2 weeks especially for the horrendously frequent migraines I can have. Usually a treatment will bring a run of migraines to an end and I do know there is scientific evidence that acupuncture helps with migraine. Acupuncture also helps me with a feeling of well-being.

    The Chinese doctor's treatments are way better than anything I have had on the NHS acupuncture-wise.

    Pam
     
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  6. worldbackwards

    worldbackwards A unique snowflake

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    My understanding of acupuncture on the NHS is that physios tend to go on courses that last about three days and don't get taught about anything that helps with anything other than basic muscle pain relief. I've found that approach to be not up to much for ME symptoms, the more useful stuff is to do with detox and stuff that boosts the system as a whole.
     
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  7. Hip

    Hip Senior Member

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    Which Chinese herb or herbal formula did you actually take?
     
  8. alex3619

    alex3619 Senior Member

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    There is considerable interest in many traditional Chinese herbal remedies from modern scientists. The theory might be a bit whacky but many of the herbs (not all) have a powerful pharmacological effect.

    TCM was the only thing that dulled my pain symptoms in the late 80s. It didn't remove them though.
     
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  9. Jenny

    Jenny Senior Member

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    The prescription contains many herbs and it changes a lot, depending on how I am. She doesn't write them in English so I don't know exactly what they are. I did ask once if she was using sophora, which I believe Dr Chia uses in his treatment, and she said she was. Most are for 'dampness' and for spleen deficiency.
     
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  10. Hip

    Hip Senior Member

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    It's normal for a Chinese herbal formula to contain around half a dozen different individual herbs. These formulas are often standard ones (called classic formulas); they have their own name, and contain the same herbs.

    Here is a list of these standard Chinese formulas. You might find what you are using in that list.

    You could always just ask your herbalist for the English name.
     
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  11. maryb

    maryb iherb code TAK122

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    @Jenny
    so glad to hear of your improvement. Do I remember you being diagnosed with Lyme also?
     
  12. Jenny

    Jenny Senior Member

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    Yes, indeed. She rarely uses any of the standard formulas. I've not really felt the need to know exactly what each prescription contains though I do have a list of the ones I have most frequently. Chinese medicine attempts to gear treatment to each person's unique needs, so people with the same diagnosis based on Western medicine won't necessary benefit from the same herbs. Also, they are supposed to act synergistically, and the list changes a lot. And it would use up valuable consultation time to ask her each to translate each name from the Chinese characters!
     
    Last edited: Nov 28, 2014
    Dreambirdie likes this.
  13. Jenny

    Jenny Senior Member

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    Yes, I was diagnosed with Lyme by Breakspear. But after years of abx, including IV, which did nothing, they told me I had probably never had it!
     
  14. maryb

    maryb iherb code TAK122

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    Oh no @Jenny that's pretty bad, god I daren't tell my family after what I've spent at B/spear, how can they then say that after testing positive?? beggars belief. All the money we throw at this, I met someone there who is spending her life's savings on treatment, originally meant to help her enjoy retirement after working all her life, its so demoralizing.
     
    Jenny likes this.
  15. Jenny

    Jenny Senior Member

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    Yes, it's very sad that most of us with any money to spend on 'treatment' often end up no better, or worse, and always very much poorer.
     
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  16. Tammy

    Tammy Senior Member

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    My health also improved after seeing a skilled TCM practitioner............but sadly he moved and the practitioner that took his place just didn't cut it. Wow.............Giovanni Maciocia.............I would have loved to be treated by him. As much as I like and believe in TCM you still have to find the right practitioner. There are different schools of thought even among TCM doctors. If you find the right one.............they are worth their weight in gold.
     
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  17. worldbackwards

    worldbackwards A unique snowflake

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    Yeah, I've seen TCM people who clearly didn't know what they were doing, qualifications or not. Also, there seem to be a lot of otherwise unqualified acupuncturists who throw a bit of medicine in on the side, because the field is poorly regulated. Always best to see someone on the TCM register (in the UK) as, although this is no guarantee of quality, they are far more likely to know what they're doing.
     
  18. Hip

    Hip Senior Member

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    Well if you ever do get curious to know what herbs you are taking, you can use Google translate to easy convert Chinese medicine names to English, and you can use a website like this one, which allows you to draw a Chinese symbol with your mouse, and it will convert it to the appropriate Chinese character, which you can then use in Google translate.
     
    wintersky and Jenny like this.
  19. wintersky

    wintersky

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    Hi Jenny,

    If you could, kindly give us more detailed updates about your current progress on this thread with Dr Jiang time to time, whether be it positive or negative. Among the few ME-debilitated individuals with immobility who have tried TCM, you might be perhaps the only one who has made some kind of progress after having it for so many years, so it does make for an interesting experience.

    Personally, for my health maintenance regime, i've always found powder/pill versions to be very much ineffective (as some have been made like years ago) It is also a commonly-held viewpoint by other TCM doctors that herbal decoctions are more effective than pills/powder.

    Another thing i am also interested to know about is if Giovanni/Dr Jiang has ever mentioned if they tried using any toxic herbs specifically. In TCM, using toxic herbs is always a last resort for chronic patients who do not respond to normal non-toxic therapy. This is because in TCM, some toxic herbs are said to have the very best healing functions. Very very few TCM doctors use toxic materials (partially due to inexperience and also due to country legal restrictions) but ive heard of some very rare experienced TCM doctors who specialize in using toxic materials to treat successfully chronic conditions which have no visible improvement using non-toxic therapy.

    As a side note, patient TCM doctors usually will advise even those with significant improvement from chronic conditions to not over-exert physically and to refrain from getting into accidents of even a minor nature as relapses can happen. It is said in TCM that for chronic conditions, individuals need at least afew more years to stabilize properly. It is unfortunate that you had a minor accident. Dr Giovanni in his book classifies you as not having a moderate case of Qi deficiency (lung + spleen) but as reaching an extreme stage of Qi exhaustion. For those with Qi-exhaustion history especially, TCM seriously cautions such people against physical exertions or any accidents of any nature.

    If you have the energy to, keep us updated of your status occasionally. Thanks.

    Wintersky
     
  20. Jenny

    Jenny Senior Member

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    Hi Wintersky

    So it's nearly a year since my post on this. I've had the best year for 10 years or so. Over the summer I was 99% well for 4-5 months, and stopped the herbs and acupuncture. Stopping them didn't lead to any deterioration. I was regularly walking 3 miles or so. I'm in my usual autumn downturn now - over the last week or so I've been feeling a little fluey, achey and sneezing a lot. But I'm still doing normal everyday things, like shopping, cooking etc.

    On your question about toxic herbs, neither Giovanni nor Dr Jiang ever mentioned these. The herbs I have these days still change a lot, and sometimes they are more for 'dampness' and sometimes more 'tonifying'.

    I'm not sure about physical over-exertion in my case. When I was much improved in the 1990s,I was pretty active - playing badminton a lot, running and skiing. None of these led to a relapse. When I did feel worse, it almost always coincided with a change of season, or with catching a virus infection.

    Hope this is helpful! As I said before, I really cannot say that the TCM treatment has caused these improvements. If there is one defining feature of my condition, it's the way it fluctuates, seemingly randomly - from hour to hour, day to day and month to month, and TCM often doesn't have an immediate effect on symptoms. If it is helping, it is a very long-term effect.
     

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