Now My Sister has CFS/ME…

[Snowdrop]

There are treatments that have been effective for some here in terms of improving functioning. The effectiveness of a treatment varies from person to person and is usually found through experimenting and is often in conjunction with other treatments to effect the improvement.

But you probably know all that. Pacing is the premier choice for first line defense but it's no cure and doesn't necessarily hold the promise of symptom remission.

I say all this because the best hope for your sister is exactly the same as the best hope for all of us. We need a treatment that has been proven to work for ME because it targets whatever is happening to us in those biological pathways that have been so badly disrupted.

Doing testing and then trying treatments can be useful and ultimately help but it's all shots in the dark (or at least twilight). Many of us have our theories as to what is causing all this and my opinion of that is; whatever the theory, unless we're talking about Jonathan Edwards or a few others our theories are most definitely absurdly simplistic to the point that they are irrelevant to being useful to really understanding what is going on.

If any of us really wants to get well what we need is advocates to lobby for exploring the causes of ME and to develop appropriate treatment strategies.

It is early days for your sister and she has you to help her navigate the complex issues around this. This is good and hopefully she will in fact improve as a result.

 

[wintersky]

So far, the items mentioned successfully used by people here in this thread:

Licorice (Gan Cao)
Barley (Yi Mi)
Acyclovir (Xia Ku Cao)
Cats Claw ( Gou Teng)

These 4 items have been used by Eastern Medicine doctors as part of a combination of various herbs to heal CFS-type conditions, written down in documented medical texts 2,000 years ago. There is a striking similarity here, if anyone notices....

 

[Tammy]

Tammy How do you take the licorice root? In a tea or ??

I'm taking Natures Answer Licorice root liquid. I'm taking 6 drops 2x daily. Actually worked up to that as I am sensitive.......and that I feel is a good conservative dose.

 

[Aurator]

the herb Prunella Vulgaris, is known in Chinese Medicine as Xia Ku Cao and is one of the very few herbs used to cure CFS

Two friends of my family are highly qualified and highly regarded Chinese doctors practising TCM in China. They have earnestly tried but cannot cure me, and have the integrity to admit that my disease appears incurable at present, whether with Western medicine or TCM. I'm not sure what to make of your own completely opposing claims.

 

[Effi]

@Aurator I'd be interested to know what you've tried in terms of TCM (just out of curiosity). There's a recent thread where we discussed TCM, but nobody seemed to have any inside info. I'll tag you there so this thread doesn't go off topic, in case you feel like sharing. Thanks!

 

[SB_1108]

Two friends of my family are highly qualified and highly regarded Chinese doctors practising TCM in China. They have earnestly tried but cannot cure me, and have the integrity to admit that my disease appears incurable at present, whether with Western medicine or TCM. I'm not sure what to make of your own completely opposing claims.

Nice to know I'm not alone after seeing multiple acupuncturists and TCM Doctors!

 

[SB_1108]

Were either of you tested for tick borne illnesses?

We've both had a number of different tick borne illness tests performed however neither of us have had the Igenex Lyme test, so that will be our next plan of action.

 

[wintersky]

Two friends of my family are highly qualified and highly regarded Chinese doctors practising TCM in China. They have earnestly tried but cannot cure me, and have the integrity to admit that my disease appears incurable at present, whether with Western medicine or TCM. I'm not sure what to make of your own completely opposing claims.

Nice to know I'm not alone after seeing multiple acupuncturists and TCM Doctors!

Keep trying. Dont give up. It will be false if we can safely say that every single person with illnesses will definitely be cured. It depends on your individual severity and case but you 2 might be the rare exceptional case. If you read the link i've provided before, it's been stated that for those who already have years of this issue, it will take way more than three months to resolve this. Not to mention that for herbal effects to occur correctly, it could take many months and years of taking, depending also on the personal experience of the TCM doctor in that particular field. Within TCM too, there are also specialist doctors dealing in specific broad illness categories. Highly reputed TCM doctors doesnt mean that they would have a better solution to your problem. I've known people who visit highly reputed doctors from China too with no results, but instead get healed by other TCM doctors with local country doctors (for non- CFS conditions). There are always exceptions

Personally, my experience visiting TCM doctors (for non-CFS minor illnesses for instance) is that there are some TCM prescriptions for which i can take for weeks and see no improvement and actually get worse, yet, when taking a prescription by another TCM doctor, i can get healed within just 2 or 3 days.

My individual story here is that while ive not been formally classified as CFS condition (never bothered trying to do too many endless tests on end since i've done alot of various tests and it was just all bad anyway). You could say that i have had symptoms similar to CFS but wasnt CFS really, thats fine too. Let me describe my symptoms:

1. Insomnia
2. Weird headaches and dizziness
3. Inability to recognize people from around me alot times and yes, inclusive of ability to recognize my own name when i need to fill in my name on forms or when someone was calling me. Sometimes this lasts long minutes and hours that it got very embarrassing and terrible when i was in school back then.
4. Inability to coordinate my muscle movements. For instance, wanting to pick up a piece of paper with my hand at table height, but not able to do so. It feels like a single piece of paper is just way way too heavy.
5. Weird muscle aches
6. Contracting flu, fever coughs on a very frequent basis and very easily.
7. Skin issues ie. itches, rashes that happens daily 24 hours a day, instant allergy to sunlight, dust, metal, seawater and a whole lot of other stuff which was just totally bewildering and crazy. Couldnt go out of the house for many many months literally just due to sunlight alone.
8. An unexplainable constant feeling of tiredness/fatigue even if i did nothing physical and just sat down on a chair the whole day
9. Gastric problems which happened even if i was eating meals regularly and at the right times.
10. muscle pains which happen for no known reason or physical activity.

etc etc

If you say the above isnt CFS, thats fine. But im sure that some symptoms at least match CFS. My personal experience is that i stopped taking the whole load of Western medicine after many many months of it. Changed my diet radically to eat much more veggies and ate TCM herbal medicine for afew months. Most of the symptoms cleared up in afew months.

Unlike most of you here i believe, i did not drag going to see TCM doctors beyond a year as TCM is more widely accepted in my Asian region. Most of my symptoms cleared up within say 3 or 4 months (around there) and i got back to normal schoollife after being away from school 1 year+. Under TCM, it's been said that illnesses which have been allowed to drag on for more than a year without being healed, are called chronic cases. I am no trained TCM doctor but have some minimal self-learning in tongue diagnosis to know that there are also some rare cases when seem from their tongue features, that some people are incurable for their conditions. These belong to the chronic cases which have not been successfully treated for years. But these are really very rare and TCM doctors will probably tell you upfront that your body cant be healed, no matter how many years + change of herbal prescription.

Whatever it is, wish you all the best