Herbal Medecine

[mayaB]

Hi Everyone,

I am new on here, I have a friend who has been diagnosed with ALS 9 months ago, I am wondering if anyone has heard or tried the chinese medecine, they are called TMCT treatment it is a hospital in Hunan, they proclaim to be experts in helping with ALS..
And does have an impact on the current medecine they are using?

 

[concerned 1]

I am also very interested in finding out more about this. My family member is set to go and I feel there has not been enough research done!

 

[mayaB]

It seems to be hard to choose, cause you never know if they are scam or not... And if you go directly to china they charge quite abit.

 

[concerned 1]

Yea, that's the scary part, it costs a lot of money, you are in a foreign country, and who knows! How much time is going to be spent away from family.

I am trying to find out if there is a similar therapy closer to home, like in Canada or the United States.

 

[mayaB]

Well these people that I found, can send you the medicine... Wich is what I have done. My only concern is am I beeing ripped off?
Also the familly member has to want to do this. I ordered herbal tea medicine, we will see if it helps him at least get a little mobility and stop beeing soo tired and then see what else we can do. I don't think my friend is ready to go to china..
What have you tried?

 

[concerned 1]

At the moment, they have not tried anything. I am going to find a good acupuncturist in the area though and maybe have my family member try that. I have had that done a few times, and it does help!

I have sent an email to the hospital in China asking for names of former patients. They say they have to contact the patients to see if they want to talk to me! =( I am going to keep at them though! Just not feeling right about a trip to China on what could be a wild goose chase!

 

[concerned 1]

I completely understand the need to get help and the sooner the better. Time certainly is the enemy for people with ALS. I just want to be as sure as I can about it.

 

[Al]

Concerned 1 and MayaB, Anything from herbal remedies to stem cell treatments in foreign countries are generally all scams. They will have excuses why none of their treatments are revieved in medical journals. Because they are going to rip you off for THOUSANDS of dollars. There is no cure or treatment for ALS right now. Rilutek has been shown to slow progression for 3 months or more. I know it's not what you want to hear but it's the truth. Some treatments may make you feel better short term but won't last.

AL.

 

[serenade]

Concerned 1 and MayaB,

When I was first diagnosed with als 1 yr ago! I also looked for anything to stop/slow progression. First I did herbal some of the herbs helped with energy and leg cramps cost =$400.00 to see and be evaluated by the homeopathic. Next I did acupunture and paid $500.00 for 10 session started out ok it helps you to relax. But then electrical stimuli was put on the needles during session 4 little rough to tolerate but I stuck it out. Session 6 involed my spine with electrical stimuli, when i was done I felt worse and did not go back, however I took a chinese herbal called cords that I treally liked and used until I started in the ceftriaxone trial in november. I still do vitamins, coconut oil, black cherry juice. Personally you have to find your own path with treatment for als. Here is my expereince with it. Good luck!
Judy

 

[mayaB]

Thank you all for your input.
My friend is considering accupuncture, I know there is no cure, but if we can help ease the pain is that wrong?
These people in china are not charging me for sessions or anything like that, they of course are charging me for the herbal medicine and thats it. Try it once if it does not do anything then we stop.

concerned, it's normal that they ask the patients permission, I am a mortgage broker and bound by confidentiality and understant that. It makes sense.

Ho god, why do we have to go through this, I just found my friend after 10 years, he was my high school sweetheart and now if only I had been in contact with him 8 months ago. You know that 1 guy who always stays with you and that you hope you find him again. That's the one. This is why I am so desperate to help him, I know I won't cure him (do miracles happen) but if I can help him.. He won't even see me, we have just been chatting on e-mail all day every day since we found one another.

Would anyone have any suggestions as to how I can get him to see me live, I know that they become self-counscious but anyone have any ideas?

 

[mayaB]

Hi Al,

Thank you for your input and your right they are generally scams, but what about these treatment in north america..
And stem cells here, do they work. I am willing to donate my own if we are a match, but he says it only works for short term.
Have you had experience with that?

 

[Al]

Stem cells don't work. Yet. Neuralstem has been granted a phase 1 trial in the US. Still in the learning stage yet. The only couple that I have had direct contact with stem cells had improvement for a few months and they are both gone now.

AL.

 

[mayaB]

ok, thank you!

 

[kelly]

I hate to even think about how much mula we have spent on alternative therapies....uggggggg! I guess we were hoping to land on some sort of weird combo that would help slow things down. No luck so far!

 

[serenade]

Next amount of money I spend looking for a cure will be to travel to Turan ->"Healing ‘gift’ from Lourdes visit frees ALS victim from wheelchair". I would love to go to Italy have a vacation and a miracle

Maya just tell him how you feel about him, and go from there. Maybe he would want to participate in the ceftriaxone trial it is in Canada and the USA. I am in it if he has questions.
Judy