Guest guest Posted March 29, 2006 Report Share Posted March 29, 2006 My son has SMA type II. According to Dr. Swoboda, he is in weak side. We tried him some chinese herbs last year for a while. Overall, he seems to have more energy, better appetite and did some help to his strength. The doctor he is seeing has quite rich experience and has dealt with a range of diseases in China for more than 15 years. It is very important to find a good doctor who knows the foundamentals of TCM. Good TCM doctor knows how to improve your own healing power. The human body is very powerful and tends to heal itself. For SMA, as my understanding, the body is too off its regular track to heal itself without a lot of intervention. I have kept in touch with more then 15 chinese SMA families for a while, most of their kids who are using chinese medicines are quite healthy and haven't progressed for quite long time. One kiddo who took chinese medicines even learnt to stand. That is the best story I have heard. My understanding is that TCM might enhance your overal health and help to remove those toxins produced by the metabolism disorder. Ben did not continue the chinese medicine because he attended VPA trial in Salt lake city. We are not sure whether he is taking the real drug or not. I do notice some positive results. Ben continues his acupuncture treatment 3 times a week since last April. Overal, he is a very healthy boy and hasn't have any scoliosis yet, although his muscle tone is very weak. If you have any questions regarding to TCM, please let me know. -jenny --- Felipe da Motta <felipe@...> wrote: > Someone else have anything o say about? > Felipe > SMA treatment from China > > > > > http://www.damo-qigong.net/treat/myelophathy/SMA.htm > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2006 Report Share Posted March 29, 2006 Hi , My daughter with SMA type II, age 7, is on acupuncture treatment for nearly 2 years. She has the treatment once a week. Overall, she has shown some improvement in her muscle power, she is able to crawl for about 5 to 10 steps now which she is not able to do previously. Would you able to share with us more on the TCM that the doctor prescribes to the kid who is learning to stand ? It is really imazing to hear that! How old is the kid now ? Thank you for your good news ! Rgds, ML Huang <jenny_huang99@...> wrote: My son has SMA type II. According to Dr. Swoboda, he is in weak side. We tried him some chinese herbs last year for a while. Overall, he seems to have more energy, better appetite and did some help to his strength. The doctor he is seeing has quite rich experience and has dealt with a range of diseases in China for more than 15 years. It is very important to find a good doctor who knows the foundamentals of TCM. Good TCM doctor knows how to improve your own healing power. The human body is very powerful and tends to heal itself. For SMA, as my understanding, the body is too off its regular track to heal itself without a lot of intervention. I have kept in touch with more then 15 chinese SMA families for a while, most of their kids who are using chinese medicines are quite healthy and haven't progressed for quite long time. One kiddo who took chinese medicines even learnt to stand. That is the best story I have heard. My understanding is that TCM might enhance your overal health and help to remove those toxins produced by the metabolism disorder. Ben did not continue the chinese medicine because he attended VPA trial in Salt lake city. We are not sure whether he is taking the real drug or not. I do notice some positive results. Ben continues his acupuncture treatment 3 times a week since last April. Overal, he is a very healthy boy and hasn't have any scoliosis yet, although his muscle tone is very weak. If you have any questions regarding to TCM, please let me know. -jenny --- Felipe da Motta <felipe@...> wrote: > Someone else have anything o say about? > Felipe > SMA treatment from China > > > > > http://www.damo-qigong.net/treat/myelophathy/SMA.htm > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2006 Report Share Posted April 3, 2006 SMA treatment from China > > > > > > > > > > > > > > > http://www.damo-qigong.net/treat/myelophathy/SMA.htm > > > > > > > > > > __________________________________________________ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2006 Report Share Posted April 3, 2006 Hi, I just worried about that one: http://www.damo-qigong.net/treat/myelophathy/SMA.htm They want 200 dollars for one month... I think is very expansive, also I need justify this for my parents. Where did you find that medicines? Could I contact them? Thanks Felipe SMA treatment from China > > > > > > > > > > > > > > > http://www.damo-qigong.net/treat/myelophathy/SMA.htm > > > > > > > > > > __________________________________________________ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2006 Report Share Posted April 3, 2006 Felipe, I think that it is expensive although the price depends on the composition and the dosage. My son took herbs which might not be the same. The doctor here in San Diego prescribed very different medicine for Ben and it costed about 18$ for two weeks. I need to get a good chinese-english herb dictionary so that I know what each composition is, then I can get quote from chinese herb store for you. I will contact those guys in that site some time later. Once I get to know those composition in chinese, I can talk to my son's doctor too. Hope this helps. jenny --- Felipe da Motta <felipe@...> wrote: > Hi, > I just worried about that one: > http://www.damo-qigong.net/treat/myelophathy/SMA.htm > They want 200 dollars for one month... I think is > very expansive, also I > need justify this for my parents. > Where did you find that medicines? Could I contact > them? > Thanks > Felipe > > SMA treatment from China > > > > > > > > > > > > > > > > > > > > > http://www.damo-qigong.net/treat/myelophathy/SMA.htm > > > > > > > > > > > > > > __________________________________________________ > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2006 Report Share Posted April 3, 2006 Dear , Do you think you can get the name of the herb prescribed in Chinese and get it scanned and post it here, maybe some of us can help ? Rgds, Foo Huang <jenny_huang99@...> wrote: Felipe, I think that it is expensive although the price depends on the composition and the dosage. My son took herbs which might not be the same. The doctor here in San Diego prescribed very different medicine for Ben and it costed about 18$ for two weeks. I need to get a good chinese-english herb dictionary so that I know what each composition is, then I can get quote from chinese herb store for you. I will contact those guys in that site some time later. Once I get to know those composition in chinese, I can talk to my son's doctor too. Hope this helps. jenny --- Felipe da Motta <felipe@...> wrote: > Hi, > I just worried about that one: > http://www.damo-qigong.net/treat/myelophathy/SMA.htm > They want 200 dollars for one month... I think is > very expansive, also I > need justify this for my parents. > Where did you find that medicines? Could I contact > them? > Thanks > Felipe > > SMA treatment from China > > > > > > > > > > > > > > > > > > > > > http://www.damo-qigong.net/treat/myelophathy/SMA.htm > > > > > > > > > > > > > > __________________________________________________ > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 I realy don't know, but he prescrive me this by e-mail: After studying the information you provided we prescribe the following two kinds of medicine from the Amyotrophy Convalescence Pill Series: Motor Neurons Refunction Capsule(serie #1), 8 boxes (600 capsules) Bulboparalysis Rehabilitation Pill (serie #2), 2 boxes (60 bags of small pill) In the site I find that below: 1. Modified Formula for Muscular Paralysis Indication: Spinal muscular atrophy (SMA) Preliminary Composition: Radix Achyranthis 20g, Radix e Sinensis 20g, Fructus Chaenomelis 20g, Ramulus Mori 30g, Radix Aristolochiae Fangchi 15g, Lumbricus 20g, Scorpio 5g, Radix Codonopsis Pilosulae 20g, Rhizoma Atractylodis 20g, Semen Lablab Album 20g, Poria Cocos 20g Variation: 1. For patients with symptom as weak lower limbs, inability for long time standing, dizziness, ear ringing, enuresis, fine pulse, which fall into category of liver deficiency , sparrow withered and sinew paralysed, add following herbs: Ramulus Loranthi 20g, Radix Dipsaci 20g, Semen Psoraleae 20g, 2. For patients with symptom as weakening limbs, poor appetite, belly distention, short breath, fatigue, pale complexion, which fall into category of deficiency of both spleen and stomach, stagnant transformation of essence, add following herbs: Fructus Amomi 30g, Pericarpium Citri Reticulatae preparata 20g 3. For patients with symptom as heavy body, fever, short and yellow urination, yellow tongue fur, tidal heat arising from below, which fall into category of prevailance of both swampness and heat, stagnant movement of both Qi and blood, add following herbs: Cortex Phellodendri 15g, Rhizoma Atractylodis Lanceae 15g, Radix Salviae Miltiorrhziae 30g, Celosia cirstata 15g, 4. For patients with symptom as vexation, thirst, dry stool, short and yellow urination, inner driness due to heat inside, which fall into category of liquid deficiency by heat with lung, less nourishment towards sinew, add following herbs: Semen Persicae 20g, Rhizoma Anemarrhenae 20g, Radix Rehmanniae preparata 20g, Gypsum Fibrosum 20g. Administration: Decocted with water. On time daily. Clinical Fact Sheet 28 received the treatment. Among them 12 gained much improvement, 5 gained minor improvement. 2. Gui Long Paralysis Removal Formula Indication: Spinal muscular atrophy (SMA), Multiple Sclerosis (MS), ALS Preliminary Composition: Carapax Et Plastrum Testudinis Preparata 15g, Draconis Os Preparata 15g, Hydrocotyle sibthorpioides 9g, Herba Cynomorii 12g, Rhizoma Polygonati Officinallis 12g, Radix Ophiopogonis 9g, Radix Achyranthis 9g, Rhizoma Dioscorea Batatis 20g, Rhizoma Atractylodis 9g, Poria Cocos 9g, Radix Pseudostellariae 3g Variation: 1. For patients with much heat, add following herbs: Gypsum Fibrosum, Rhizoma Anemarrhenae, Caulis Lonicerae 2. For patients with much dampness, add following herbs: Rhizoma Atractylodis Lanceae, Semen Coicis 3. For patients with lower limbs paralysis, add following herbs: Fructus Chaenomelis, tiger bone 4. For patients with waist and back impediment involved, add following herbs: Cortex Eucommiae preparata, Gou Ji 5. For patients with deficiency of both Qi and Yin, add following herbs: Radix Astragali preparata, Fructus Schizandrae Administration: Decocted with water. On time daily. Clinical Fact Sheet Effective rate: 84% Thanks for reply Felipe SMA treatment from China > > > > > > > > > > > > > > > > > > > > > > > > > > > http://www.damo-qigong.net/treat/myelophathy/SMA.htm > > > > > > > > > > > > > > > > > > __________________________________________________ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 Did anyone notice the reference to 'semen'? Are they saying that if I consume semen, my SMA will go away? Seriously now, be very careful because some of these things could be toxic and may have side effects. Regards Re: SMA treatment from China I realy don't know, but he prescrive me this by e-mail: After studying the information you provided we prescribe the following two kinds of medicine from the Amyotrophy Convalescence Pill Series: Motor Neurons Refunction Capsule(serie #1), 8 boxes (600 capsules) Bulboparalysis Rehabilitation Pill (serie #2), 2 boxes (60 bags of small pill) In the site I find that below: 1. Modified Formula for Muscular Paralysis Indication: Spinal muscular atrophy (SMA) Preliminary Composition: Radix Achyranthis 20g, Radix e Sinensis 20g, Fructus Chaenomelis 20g, Ramulus Mori 30g, Radix Aristolochiae Fangchi 15g, Lumbricus 20g, Scorpio 5g, Radix Codonopsis Pilosulae 20g, Rhizoma Atractylodis 20g, Semen Lablab Album 20g, Poria Cocos 20g Variation: 1. For patients with symptom as weak lower limbs, inability for long time standing, dizziness, ear ringing, enuresis, fine pulse, which fall into category of liver deficiency , sparrow withered and sinew paralysed, add following herbs: Ramulus Loranthi 20g, Radix Dipsaci 20g, Semen Psoraleae 20g, 2. For patients with symptom as weakening limbs, poor appetite, belly distention, short breath, fatigue, pale complexion, which fall into category of deficiency of both spleen and stomach, stagnant transformation of essence, add following herbs: Fructus Amomi 30g, Pericarpium Citri Reticulatae preparata 20g 3. For patients with symptom as heavy body, fever, short and yellow urination, yellow tongue fur, tidal heat arising from below, which fall into category of prevailance of both swampness and heat, stagnant movement of both Qi and blood, add following herbs: Cortex Phellodendri 15g, Rhizoma Atractylodis Lanceae 15g, Radix Salviae Miltiorrhziae 30g, Celosia cirstata 15g, 4. For patients with symptom as vexation, thirst, dry stool, short and yellow urination, inner driness due to heat inside, which fall into category of liquid deficiency by heat with lung, less nourishment towards sinew, add following herbs: Semen Persicae 20g, Rhizoma Anemarrhenae 20g, Radix Rehmanniae preparata 20g, Gypsum Fibrosum 20g. Administration: Decocted with water. On time daily. Clinical Fact Sheet 28 received the treatment. Among them 12 gained much improvement, 5 gained minor improvement. 2. Gui Long Paralysis Removal Formula Indication: Spinal muscular atrophy (SMA), Multiple Sclerosis (MS), ALS Preliminary Composition: Carapax Et Plastrum Testudinis Preparata 15g, Draconis Os Preparata 15g, Hydrocotyle sibthorpioides 9g, Herba Cynomorii 12g, Rhizoma Polygonati Officinallis 12g, Radix Ophiopogonis 9g, Radix Achyranthis 9g, Rhizoma Dioscorea Batatis 20g, Rhizoma Atractylodis 9g, Poria Cocos 9g, Radix Pseudostellariae 3g Variation: 1. For patients with much heat, add following herbs: Gypsum Fibrosum, Rhizoma Anemarrhenae, Caulis Lonicerae 2. For patients with much dampness, add following herbs: Rhizoma Atractylodis Lanceae, Semen Coicis 3. For patients with lower limbs paralysis, add following herbs: Fructus Chaenomelis, tiger bone 4. For patients with waist and back impediment involved, add following herbs: Cortex Eucommiae preparata, Gou Ji 5. For patients with deficiency of both Qi and Yin, add following herbs: Radix Astragali preparata, Fructus Schizandrae Administration: Decocted with water. On time daily. Clinical Fact Sheet Effective rate: 84% Thanks for reply Felipe SMA treatment from China > > > > > > > > > > > > > > > > > > > > > > > > > > > http://www.damo-qigong.net/treat/myelophathy/SMA.htm > > > > > > > > > > > > > > > > > > __________________________________________________ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2006 Report Share Posted April 7, 2006 TCM is a totally different approach from western medicine. It is very hard to understand those terms, e.g. dampness, heat, cold, etc., if you never heard about them. In TCM, there is no SMA, it is treated as other muscle diseases. TCM tries to strengthen your inner organs and promote your health to relieve the symptoms. Sometimes it works well which western doctors can't understand. I would say those compositions are common in TCM, usually it is the dosage which makes a lot of differences. I do mention one of composition " Scopion " to my son's acupuncturer. He seems not to agree to it. He said in short term, you will see improvement, but in the long run it might hurt liver and kidney. I know there are some chinese guys with muscle disease who eat ants (specially processed) and have some positive results. Most of them can not afford taking them for a long time. So I am not sure what the long term effects will be. By the way, most of herbs including those " semens " are specially processed so that the side effects are greatly reduced. For your references, I list several compositions as follows: (1) Semen Persicae english name: peach seed actions: To promote blood circulation, to eliminate phlegm, and to relax the bowels. Aslo effective against high blood pressure and chronic appendicitis; high doses are toxic. (2) Semen Lablab Album English name: White Hyacinth Bean actions: To invigorate the spleen and remove damp, particularly the summer-damp; To invigorate the spleen and remove damp. (3) Semen Coicis English name: Coix seed or Job's tears seed Actions: To transform dampness and promote water metabolism; To strengthen the spleen; To clear heat and eliminate pus --- Felipe da Motta <felipe@...> wrote: > I realy don't know, but he prescrive me this by > e-mail: > After studying the information you provided we > prescribe the following two > kinds of medicine from the Amyotrophy Convalescence > Pill Series: > > Motor Neurons Refunction Capsule(serie #1), 8 boxes > (600 capsules) > Bulboparalysis Rehabilitation Pill (serie #2), 2 > boxes (60 bags of small > pill) > > In the site I find that below: > 1. Modified Formula for Muscular Paralysis > Indication: > Spinal muscular atrophy (SMA) > Preliminary Composition: > Radix Achyranthis 20g, Radix e Sinensis 20g, > Fructus Chaenomelis > 20g, Ramulus Mori 30g, Radix Aristolochiae Fangchi > 15g, Lumbricus 20g, > Scorpio 5g, Radix Codonopsis Pilosulae 20g, Rhizoma > Atractylodis 20g, Semen > Lablab Album 20g, Poria Cocos 20g > Variation: > 1. For patients with symptom as weak lower limbs, > inability for long time > standing, dizziness, ear ringing, enuresis, fine > pulse, which fall into > category of liver deficiency , sparrow withered and > sinew paralysed, add > following herbs: > Ramulus Loranthi 20g, Radix Dipsaci 20g, Semen > Psoraleae 20g, > 2. For patients with symptom as weakening limbs, > poor appetite, belly > distention, short breath, fatigue, pale complexion, > which fall into category > of deficiency of both spleen and stomach, stagnant > transformation of > essence, add following herbs: > Fructus Amomi 30g, Pericarpium Citri Reticulatae > preparata 20g > 3. For patients with symptom as heavy body, fever, > short and yellow > urination, yellow tongue fur, tidal heat arising > from below, which fall into > category of prevailance of both swampness and heat, > stagnant movement of > both Qi and blood, add following herbs: > Cortex Phellodendri 15g, Rhizoma Atractylodis > Lanceae 15g, Radix Salviae > Miltiorrhziae 30g, Celosia cirstata 15g, > 4. For patients with symptom as vexation, thirst, > dry stool, short and > yellow urination, inner driness due to heat inside, > which fall into category > of liquid deficiency by heat with lung, less > nourishment towards sinew, add > following herbs: > Semen Persicae 20g, Rhizoma Anemarrhenae 20g, Radix > Rehmanniae preparata > 20g, Gypsum Fibrosum 20g. > Administration: > Decocted with water. On time daily. > Clinical Fact Sheet > 28 received the treatment. Among them 12 gained much > improvement, 5 gained > minor improvement. > > 2. Gui Long Paralysis Removal Formula > Indication: > Spinal muscular atrophy (SMA), Multiple Sclerosis > (MS), ALS > Preliminary Composition: > Carapax Et Plastrum Testudinis Preparata 15g, > Draconis Os Preparata 15g, > Hydrocotyle sibthorpioides 9g, Herba Cynomorii 12g, > Rhizoma Polygonati > Officinallis 12g, Radix Ophiopogonis 9g, Radix > Achyranthis 9g, Rhizoma > Dioscorea Batatis 20g, Rhizoma Atractylodis 9g, > Poria Cocos 9g, Radix > Pseudostellariae 3g > Variation: > 1. For patients with much heat, add following herbs: > Gypsum Fibrosum, Rhizoma Anemarrhenae, Caulis > Lonicerae > 2. For patients with much dampness, add following > herbs: > Rhizoma Atractylodis Lanceae, Semen Coicis > 3. For patients with lower limbs paralysis, add > following herbs: > Fructus Chaenomelis, tiger bone > 4. For patients with waist and back impediment > involved, add following > herbs: > Cortex Eucommiae preparata, Gou Ji > 5. For patients with deficiency of both Qi and Yin, > add following herbs: > Radix Astragali preparata, Fructus Schizandrae > Administration: > Decocted with water. On time daily. > Clinical Fact Sheet > Effective rate: 84% > > Thanks for reply > Felipe > > > > > Re: SMA treatment from > China > > > > > > > > > > I am glad that your daughter has had some good > > > results > > > > with acupuncture treatment. Does she receive > any > > > other > > > > treatments beside that? The girl who learnt to > > > stand > > > > is now 6 years old, she did some acupuncture > for > > > > several months around one year old then took > some > > > > chinese medicines after that every day. > Usually, > > > the > > > > herbs are prescriped by the doctor > specifically > > > for > > > > you, although some majoy herb ingrediences are > > > > similar. > > > > regards, > > > > jenny > > > > > > > > --- MLF CHA <clxcli@...> wrote: > > > > > > > > > Hi , > > > > > My daughter with SMA type II, age 7, is on > === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2006 Report Share Posted June 3, 2006 Thank you for the update. I'm sorry this 1st round hasn't helped. Looking forward to hearing about your 2nd venture. Good luck, Aul. Alana > > Hello, > > As I promised to do, I let you know that I have taken all of the > Chinese medication that I told you about several weeks ago. > Unfortunately, they didn't help me. I'm not saying that they don't help > anybody, but they really didn't help me in my condition. In a few weeks > I will start taking another Chinese stuff. I will keep you informed > about that. > > Aul > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2006 Report Share Posted June 4, 2006 Aul, Do you still get the medicine from the same guys? I asked my friends in China to gather more info about them. They seemed not having the related chinese website. The doctor who registered in one province worked in another hospital. I think that it is very fishy. Please be careful. jenny --- Aul Pedajas <aul_co@...> wrote: > Hello, > > As I promised to do, I let you know that I have > taken all of the > Chinese medication that I told you about several > weeks ago. > Unfortunately, they didn't help me. I'm not saying > that they don't help > anybody, but they really didn't help me in my > condition. In a few weeks > I will start taking another Chinese stuff. I will > keep you informed > about that. > > Aul > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2006 Report Share Posted June 4, 2006 No, the other stuff I'm going to try is from another source. I know that there is a lot of risk involved when trying new things, but I know one thing - if I don't try, I will never get any better. I will keep in touch. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.