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Posted

I have not been able to get back to Thailand for almost 3 years now due to increasing ill health.

UK diagnosis is guesswork and prescription of horrific treatments like steroids which by themselves have probably done more damage than any initial problem have really made things much worse. I have definitely an auto immune condition which has been guessed at as everything from Lupus SLE, polymyalgia ( I'm too young for that) Fybromyalgia , Hughes syndrome, epilepsy and temporal artitis. Basically they don't know. I'm seeing neurologist, rheumatologist and a Lupus specialist.

I'm sick of their lets try this drug and see attitude. Life is one long struggle with dreadful pain and weakness.

I have been searching online for months trying to pick a health detox set up which is responsible and genuine. if they mess up whilst I'm still stuck on steriods I could genuinely snuff it as after so long I am now adrenal dependent though weaning off v slowly. They now want to stick me on another nasty sounding drug with lousy side effects alongside for a few months to try!

I was wondering about the Sanctuary on Koh Phangan or one of the many there seem to be on Samui? I'd really appreciate some advice to make sure I don't get some glossed up spa with no real understanding of my somewhat fragile medical state. I honestly think Detox, Thai massage and Chinese medicine type treatment is the way to go to get the balance back.

Incapacity and keeping my business going whilst having to pay people to do the simplest thing for me has left me much financially depleted so I can't afford some I've come across costing Thousands of pounds for a few weeks.

Can anybody help?

Posted

I think the least expensive, and certainly no frills, place is Health Oasis on Samui.

For Chinese medicine, St Louis Hospital (a non-profit in Bkk) as a traditional Chinese medicine clinci

Of course, you should not abruptly stop or change your medical treatment while trying any of these approaches. If you are on steroids, stay on them (or continue gradula taoering as recommended by doctor).

Have you been evaluated for Chronic Fatigue Syndrome? On what basis has it been determined that you have an auto-immune dosease? If you do, would expect to see noticeable improvement on steroids....

Posted
I think the least expensive, and certainly no frills, place is Health Oasis on Samui.

For Chinese medicine, St Louis Hospital (a non-profit in Bkk) as a traditional Chinese medicine clinci

Of course, you should not abruptly stop or change your medical treatment while trying any of these approaches. If you are on steroids, stay on them (or continue gradula taoering as recommended by doctor).

Have you been evaluated for Chronic Fatigue Syndrome? On what basis has it been determined that you have an auto-immune dosease? If you do, would expect to see noticeable improvement on steroids....

Thanks. Yes I'd kind of narrowed it down to Health Oasis or the Sanctuary on Phangan. I heard good things first hand of The sanctuary from someone who was helped to get rid of kidney stones instead of surgery as the only alternative in his Native US. He was high in praising the place. I've found online reviews aplenty re the Sanctuary . Mostly very good although a few extremely negative. However can't find anything other than a couple of reviews of Health Oasis.

I have CFS and Autoimmune both having been diagnosed after masses of blood tests CAT scans MRI and a lot of other examinations etc agreed between both Rheumatologist and Neurologist. However both believe the Steroids although they helped with pain etc caused a massive allergic reaction. They also agree I need to wean off as fast as possible but with obvious care and caution due to probably now being renal dependent after a year on them. The prednisone caused fits and one massive seizure which left me unconscious for 4 hours and complete paralysis of the radial and some other nerves in my right arm which just dangled for 2 weeks before slowly returning. I was hospitalised for 3 weeks at this point. I've been left with loss of dexterity in both hands also which has remained after more than 10 months. Cutting down the steroids have definitely made me less ill in many ways but the original pain and problems are flooding back the more I reduce.

I wouldn't dream of stopping steroids cold as it would probably lead to renal failure so although I'm dropping the dose as advised ( which is hel_l each time) I would still be on a small dose by the time I went to a detox centre. That's why I want to be sure they know what they're doing as I can't risk the dose not being absorbed.

also I'm not at all keen on being put on another drug with hefty side affects alongside the steroids as a kind of lets try this and see if it helps and then it might be lupus approach! This is the latest route the Lupus unit has suggested despite the positive Lupus result could in fact be down to Hughes syndrome as antibodies were found in one result for that.

I honestly think the steroids have caused more damage than good and if I had come to Thailand with my initial onset it would have probably been addressed with positive results but now steriods for so long make it more complex.

If anyone has any experience of this kind of health problem and positive treatment results to share I 'd be really grateful for their contribution.

This has pretty much wiped my life out.

Posted

The info you have provided is not at all clear so I don't think anone can determine if they have the same problem or not.

Are you saying you have been given a definitive diagnosis of both CFS and Lupus? because that seems rather unlikely.

My main concern re your doing a "detox" regime is the large number if herbal concoctions that are given. Many people have the mistaken imopression that "herb" equals harmless, not necessarily true at all. Herbs can have adverse effects and adverse interactions with other drugs. It will be difficult to find out exactly what is in all the supplements given and even if one could, no way of knowing if or how these might interact with the other medications you are on. Are you on anything other than prednisone? I am particulalry concerned if you are on any type of anticoagulant as many herbs have coagulative effects.

Hughes Syndrome (APS) and lupus can coexist in the same patient.

Lupus is for some reason very common in SE Asia and there are many Thai doctors specializing in it. There is also, for sure, no magic cure for it to be found in Thailand anymore than elsewhere. However you might like to take advantage of the comparitively low cost of medical care here and abundance of well trained specialists to consult a specialist in it for a second (or, in your case, third/fourth/fifth whatever) opinion. From what you describe I suspect that the problem may not be as much in what your doctors have prescribed/done as in their taking enough time to throoughly explain things to you. Anyhow, if you want a specialist recommendation let me know and bring all medical records along. It can't hurt and as it sounds like you have already had comprehensive tests doen is likely to cost you only the consultation fee, probably about 1000 Baht.

Posted

My experience of most healing centers in Thailand is that they are focused on cleaning the colon in an attempt reduce the volume of toxins stored in the body and allow the immune system to strengthen. With the immune system strengthened the body can then address imbalances and conditions.

There are two healing centers I know of that go beyond this paradigm and also look at what to put back into the body as opposed to just looking at what needs to be taken out. Neither are in Koh Samui.

Dao Garden in Chiang Mai is a large center that has been around a long time. Mantak Chia is the founder he is a world authority on Traditional Chinese Medicine and has published many books.

Atmanjai Wellness on Koh Phuket is only about 2 years old but is I understand having great success with all manner of conditions. They limit the number of clients to 12 at any given time.

Good luck.

Posted
The info you have provided is not at all clear so I don't think anone can determine if they have the same problem or not.

Are you saying you have been given a definitive diagnosis of both CFS and Lupus? because that seems rather unlikely.

My main concern re your doing a "detox" regime is the large number if herbal concoctions that are given. Many people have the mistaken imopression that "herb" equals harmless, not necessarily true at all. Herbs can have adverse effects and adverse interactions with other drugs. It will be difficult to find out exactly what is in all the supplements given and even if one could, no way of knowing if or how these might interact with the other medications you are on. Are you on anything other than prednisone? I am particulalry concerned if you are on any type of anticoagulant as many herbs have coagulative effects.

Hughes Syndrome (APS) and lupus can coexist in the same patient.

Lupus is for some reason very common in SE Asia and there are many Thai doctors specializing in it. There is also, for sure, no magic cure for it to be found in Thailand anymore than elsewhere. However you might like to take advantage of the comparitively low cost of medical care here and abundance of well trained specialists to consult a specialist in it for a second (or, in your case, third/fourth/fifth whatever) opinion. From what you describe I suspect that the problem may not be as much in what your doctors have prescribed/done as in their taking enough time to throoughly explain things to you. Anyhow, if you want a specialist recommendation let me know and bring all medical records along. It can't hurt and as it sounds like you have already had comprehensive tests doen is likely to cost you only the consultation fee, probably about 1000 Baht.

it's a long story and too complicated to go into at length but I do already know and understand the points you make. CFS however goes pretty much hand in hand with many Autoimmune conditions as well as being a side effect of Prednisolone so I am a bit concerned that you say otherwise so confidently! Particularly as decreasing the dose has shown a noticeable improvement although it's still pretty severe.

As I said although Hughes antibodies are present it does not mean I have Lupus . The positive Lupus result may only be because of the Hughes AND virtually all my symptoms apart from chronic paralysing muscle pain ( which could be simply Fibromyalgia) started after Prednisolone use which the Neurologist has strongly said I am highly allergic to.

The need to still be on the low dose of Prednisolone is why I am so particular about Detox with a Centre with practitioners trained enough to understand whether certain parts of the programme could be non compatible with these meds. That was why I made this post.

Thanks anyway for your input and trying to help.

Posted
My experience of most healing centers in Thailand is that they are focused on cleaning the colon in an attempt reduce the volume of toxins stored in the body and allow the immune system to strengthen. With the immune system strengthened the body can then address imbalances and conditions.

There are two healing centers I know of that go beyond this paradigm and also look at what to put back into the body as opposed to just looking at what needs to be taken out. Neither are in Koh Samui.

Dao Garden in Chiang Mai is a large center that has been around a long time. Mantak Chia is the founder he is a world authority on Traditional Chinese Medicine and has published many books.

Atmanjai Wellness on Koh Phuket is only about 2 years old but is I understand having great success with all manner of conditions. They limit the number of clients to 12 at any given time.

Good luck.

Thank you for the response. What you say about going beyond just cleansing is what I'm hoping to find as well as understanding that I may not be able to follow a standard cleanse

as I have to keep that steroid dose in long enough to be absorbed.

Do you mean Tao Garden perhaps? I looked at them and it certainly appealed as they have Qualified medical Doctors on staff which seems safer.

Also I have the other you mention jotted down as a possible. Where did you get info re their success from? i'm searching diligently t make sure I get genuine feedback.

I guess I was hoping for some examples of personal experiences at a various places from Thai Visa members.

For example Rheumatoid arthritis is an Autoimmune condition so wondered if anyone had found improvement on that.

Posted
CFS however goes pretty much hand in hand with many Autoimmune conditions as well as being a side effect of Prednisolone

Fatigue can be a side effect of steroids but not CFS. CFS is a specific condition with specific diagnostic criteria, one of thise is the exclusion of other causes of chronic fatigue.

I assume that when you talk about a "positive lupus test" that may be due to Hughes Syndrome you are referring to the "Lupus Anticoagulant" test. LA is actually a misnomer as it is not, in fact, test for lupus. The best screen for lupus is the the ANA titer. Although ANA can be positive for other conditions (eg RA), a titer of 1:320 or higher has only a 3% chance of not being lupus.

I am not aware of any detox or natural health center with medical doctors on staff let alone ones specializing in immunology/rheumatology. A naturopath may be quite knowledgable about herbal remedies etc but is unlikely to be knoiwledgable about potential interactions with prednisone. Unfortunately, neither is a medical doctor, in that instance because of lack of knowledge regarding herbal/traidional medications. In other words you can find people knowledgable about one or the other but it is hard to find someone knowledgable about both. :)

The safest course of action would be to taper off or the prednisone or at least down to a minimal dose before starting alternative treatments. Otherwise you will just have to take your chances and be alert to the possibility of an untoward reaction, if this is the route you want to go.

If you are on anticoagulants, as you may be if Hughes is a consideration, that's a whole other matter in itself, many herbs and dietary supplements affect the action of anticoagulants.

The closest you might get to someone familiar with both would be an MD specializing in Chinese medicine e.g. the Chinese medicine clinic at St Louis, but this is not a retreat facility, and of course limited to Chinese traditional medicines rather than a larger gamut of traditional and herbal remedies.

Posted

sorry to hear about your condition. I suffer from peripheral neuropathy and hive given up the pain killers don't like the side effects. Tell your doctor what you intend doing and follow his instruction. You will no doubt feel much better after de tox , just being away from the stress of running a business whilst ill will be a great medium term remedy, good luck

Posted
I think the least expensive, and certainly no frills, place is Health Oasis on Samui.

For Chinese medicine, St Louis Hospital (a non-profit in Bkk) as a traditional Chinese medicine clinci

Of course, you should not abruptly stop or change your medical treatment while trying any of these approaches. If you are on steroids, stay on them (or continue gradula taoering as recommended by doctor).

Have you been evaluated for Chronic Fatigue Syndrome? On what basis has it been determined that you have an auto-immune dosease? If you do, would expect to see noticeable improvement on steroids....

Thanks. Yes I'd kind of narrowed it down to Health Oasis or the Sanctuary on Phangan. I heard good things first hand of The sanctuary from someone who was helped to get rid of kidney stones instead of surgery as the only alternative in his Native US. He was high in praising the place. I've found online reviews aplenty re the Sanctuary . Mostly very good although a few extremely negative. However can't find anything other than a couple of reviews of Health Oasis.

I have CFS and Autoimmune both having been diagnosed after masses of blood tests CAT scans MRI and a lot of other examinations etc agreed between both Rheumatologist and Neurologist. However both believe the Steroids although they helped with pain etc caused a massive allergic reaction. They also agree I need to wean off as fast as possible but with obvious care and caution due to probably now being renal dependent after a year on them. The prednisone caused fits and one massive seizure which left me unconscious for 4 hours and complete paralysis of the radial and some other nerves in my right arm which just dangled for 2 weeks before slowly returning. I was hospitalised for 3 weeks at this point. I've been left with loss of dexterity in both hands also which has remained after more than 10 months. Cutting down the steroids have definitely made me less ill in many ways but the original pain and problems are flooding back the more I reduce.

I wouldn't dream of stopping steroids cold as it would probably lead to renal failure so although I'm dropping the dose as advised ( which is hel_l each time) I would still be on a small dose by the time I went to a detox centre. That's why I want to be sure they know what they're doing as I can't risk the dose not being absorbed.

also I'm not at all keen on being put on another drug with hefty side affects alongside the steroids as a kind of lets try this and see if it helps and then it might be lupus approach! This is the latest route the Lupus unit has suggested despite the positive Lupus result could in fact be down to Hughes syndrome as antibodies were found in one result for that.

I honestly think the steroids have caused more damage than good and if I had come to Thailand with my initial onset it would have probably been addressed with positive results but now steriods for so long make it more complex.

If anyone has any experience of this kind of health problem and positive treatment results to share I 'd be really grateful for their contribution.

This has pretty much wiped my life out.

Hi - I first went to Health Oasis when I arrived in Thailand and subsequently have used the detox facilities at Spa Samui (beach) for an extended cleanse with life-changing benefits. Spa Samui wins hands down - no contest. PM me if you want more details.

Posted

I would also recommend Tao Garden in Chiangmai as a good place to detox and recover. While there, you might also like to make contact with Dr Eddy Betterman, who used to head their medical staff but now has his own medical practice. He is a highly qualified German doctor with extensive training in holistic approaches to health maintenance and recovery. Check out http://www.dreddy-clinic.com/.

Good luck.

Posted

Thanks for all the responses amd useful advice from everyone.

I've checked out VITALGIRL's suggestion but got no answer to a PM so I guess shes not been online since I saw her post.

No disrespect to anyone else but I was hoping for personal experience. Has anyone else on Thai Visa used Spa Samui or any others?

I love Chang Mai but am leaning toward Samui because it seems to be quite a hub for such centres.

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