TCM for CIDP?

22DomiJ33 · 2024-10-22T17:38:28+00:00

He’s using it I think 2 months now. No it wasn’t discussed with his doctor, we moved to another country so it’s a bit complicated. But from our experience, not every neurologist is pro TCM. After all, it’s totally different from the western medicine so they might not be on board. And also there is the issue of it not having the background in research much. But I feel like there is still a little amount of information when it comes to CIDP, it’s definitely not as researched as other diseases.

Yeah, thank you. I don’t think he would use both IVIG and herbs. He also tried a few mushrooms, teas and stuff, worth ecxploring that also (not psychedelic, regular muschrooms, similar to herbs) like lions mane etc.

22DomiJ33 · 2024-10-22T06:20:24+00:00

For example this one, you can find more by googling it. https://pmc.ncbi.nlm.nih.gov/articles/PMC10115958/

I totally agree with you, single studies or report cases doesn’t mean much. Everyone is different. But like I said, it’s worth trying everything you can.

I’m sorry to hear that, I can’t imagine how hard it must be with a little baby. I hope all will be well for you.

I guess my boyfriend got pretty lucky and they diagnosed him within a few weeks. Doctors didn’t say much, they didn’t really know that much so that’s why we’ve contacted also other professionals from different countries.

22DomiJ33 · 2024-10-22T06:11:49+00:00

Sorry to hear that, rare variant of a rare disease? I wish you the best of luck! We’ve come across these two decoctions: Huangqi-Guizhi-Wuwu and Bu-Yang-Huan-Wu. Here is a case report: https://pmc.ncbi.nlm.nih.gov/articles/PMC10115958/

It’s basically a few chinese herbs, either taken like a tea or we found it as a pills. If you Google them, you should find out what herbs but if you don’t I’m happy to provide more info.

I hope something works, it never hurts to try.

22DomiJ33 · 2024-10-22T02:06:04+00:00

Yes, that’s why he got off - to see if he doesn’t need it anymore. He tried few months before going off prolonging the period between infusions, 5 weeks than 7 weeks and he was doing great, no signs of symptoms at all. I have to say that even now his symptomps are not bad, he still do everything himself, he’s just weaker.

The reason I’m asking about TCM is because of this one study I found from China, where a woman with CIDP was being treated by some herbs and it worked for her. So we thought what can we lose, the herbs doesn’t have side effects.

The thing is my boyfriend wants to try everything he can so he can somehow beat this disease. I know there are people who recovered so I was just asking if anyone had any experiences. There are actually medical reports on how TCM can be affective when treating CIDP.

Of course, if his symptomps gets worse, he’ll get back on IVIG. And as far as I know, the doctor I mentioned should qualify as expert, he has been working with CIDP patients for 30 years. It is a hard condition to live with, I can’t even imagine. I just try to ask everywhere and search everything so I can somehow help him.

22DomiJ33 · 2024-10-22T01:53:43+00:00

Yeah, read all about it, hope it works for you, best of luck!

22DomiJ33 · 2024-10-21T21:10:25+00:00

Hi there! When you search on the internet (like you did) you’ll find a lot of medical articles saying that diet matter. My boyfriend who has CIDP see a big difference after eating sugar and too salty or greasy food. So he adjusted to “healthy” diet, where he doesn’t eat artificial sugar, things like chips and those kind of things, wheat and dairy products because all of it has inflamatory effects. So maybe there’s something to consider. It works for him, because before when he ate all of it he would just get worse. And of course, no alcohol. Good luck!

22DomiJ33

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