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Ask HN: Has anyone undergone stem cell treatment for auto-immune disease?

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Re: Ask HN: Has anyone undergone stem cell treatment for auto-immune disease?

#91
post #53

It's been suggested that i might have this as well. could you talk about what you had to go through for a diagnosis? Literally every morning is hell. Should i just say fuck it and move to a warm climate?

Go to get a test for hla-b27 gene and inflammation makers at a hospital. Try get a referral to a rheumatologist. They will do the tests and also send you for xray of critical joints that are affected.

Re: Ask HN: Has anyone undergone stem cell treatment for auto-immune disease?

#92

Anecdotal, and not answering the parent's question, but may be useful to someone, so I'll leave it here. Someone close to me was diagnosed with Ankylosing Spondylitis and found that swimming essentially erased the symptoms. This person was diagnosed in her 30ies. Her GP suggested that, along with maintaining a good diet, she learn proper swimming technique and start swimming daily. She has been swimming daily for the…

I exercise (cycling) minimum 3*1+ hour a week. Usually more. Not much of a swimmer though I do it sometimes. Haven't noticed it to provide any added benefit over other types of sports. Exercise is definitely part of any effective treatment program.

Re: Ask HN: Has anyone undergone stem cell treatment for auto-immune disease?

#93
post #9

My mom, my little brother and I also have Ankylosing spondylitis and in my country we get free and the best possible treatment. With that in mind, there is no cure and there is not even much effort put into research of a cure. But with a good treatment plan your daily life quality can improve a lot. I have earlier asked my doctor about stem cell treatment, but my doctor says this is very experimental and lacks a good…

I exercise. Actually AS makes it so I exercise less than I would like to. I love exercising and was competitive at an international level as a teenager. I won't take TNFα's. Seems to be worse for my body than the disease. I'm more interested in positive sum treatments.

Re: Ask HN: Has anyone undergone stem cell treatment for auto-immune disease?

#94
post #57
post #47

Earlier quoted context omitted.

I would like to hear more about resources regarding the latent viral infection theory. I've been helped a bit by low dose naltrexone in the past and I've been reading a bit about things like vagus nerve infections, but if you've been through treatment I'd like to know what your experience was like, if you don't mind.

I've been dealing with Hashimoto's symptoms for more than 5 years now (and possibly Addison's). All my thyroid and adrenal hormones were completely out of whack and I suffered greatly. Went on various combinations of hormone replacement, tried various diets, spent tranches of money on supplements and alternative therapies, and have seen close to about 20 different specialists. Everything I've tried at best gave me cl…

What was a high titer for you? I actually ordered myself an HHV-6 test and mine was around 16 or so. Also, your story is so familiar. So many attempted treatments and doctors. It's very difficult to find a legitimate doctor on the forefront of therapies like this that isn't a dangerous quack.

Re: Ask HN: Has anyone undergone stem cell treatment for auto-immune disease?

#95
post #9

My mom, my little brother and I also have Ankylosing spondylitis and in my country we get free and the best possible treatment. With that in mind, there is no cure and there is not even much effort put into research of a cure. But with a good treatment plan your daily life quality can improve a lot. I have earlier asked my doctor about stem cell treatment, but my doctor says this is very experimental and lacks a good…

I also have AS and started with NSAIDs, and would advise you be very careful with your stomach. I was taking indomethacin that made the stiffness slightly manageable but acid reflux symptoms became a serious issue. After switching to Humira I have no more active pain or stiffness, with only some minor uveitis (in an eye that has many other issues). I wish someone would warned me earlier because my stomach has never b…

I don't take drugs. I will take an immune regulating cure but not a immuno-suppressant like Humira. NSAIDs class of drugs are not good for long term treatment. They will physically destroy any semblance of health you may have.

Re: Ask HN: Has anyone undergone stem cell treatment for auto-immune disease?

#96

My official diagnosis is atypical cystic fibrosis. I manage it with diet and lifestyle. I'm off all medication. You say you have seen big improvement with diet. Let me echo what others here are saying: If you aren't getting regular, gentle exercise (walking, hydrotherapy), try adding exercise to your regimen before seeking more drastic measures, like stem cell treatment. The lymphatic system is powered in part by exe…

As I mentioned elsewhere I get plenty of exercise. I would get more but I'm somewhat limited by AS. If I spent 6 hours on the bike I get very inflamed the week after. There seems to be a sweet spot of about an hour a day for exercise unfortunately.

Re: Ask HN: Has anyone undergone stem cell treatment for auto-immune disease?

#97

Earlier quoted context omitted.

I don't know if my specific interactions with hypnosis will be of too much insight, but I had been studying hypnosis, taking a few courses on it mainly for the entertainment side of things (making people dance like chickens and such). Then I ran into a course that taught a 10-minute pain relief hypnosis script. [1] I wasn't sure how effective it would be, but I have intense knee pain every so often at night that won'…

very smart promotion, I strongly advice people stop trust what you say, after you put this link here. Because if you wanna help people, how the hell you put a sth to sell? Why not put the whole script, your paper, your rewrote script down here, for free? No way man, you are kidding with other people' health, this is shit.

Haters gonna hate. I have no affiliation with that link, as I said, I have no idea if my path has much relevance, all I know is that my path worked for me. I didn't even explain until two people asked me for more details.

In addition, what you are suggesting is that I violate the copyright of the hypntotists I have learned from.

I never claimed that hypnosis was a cure all for everyone in every situation, I was just curious if someone else with auto immune disorder had attempted this path.

Furthermore, I hope you don’t trust me or you or anything you read on the internet at face value. Do your own research always. That doesn’t mean you have the right to go around accusing everyone of being a lying thief.

Re: Ask HN: Has anyone undergone stem cell treatment for auto-immune disease?

#98

Earlier quoted context omitted.

Just a tangential headsup for others if they are paying for vimovo (out of pocket, or significant co-pay). Vimovo is a combination of two generics (naproxen & esomeprezol) delayed release. You can probably get OTC versions of the two pills for much cheaper than what Vimovo charges. This drug falls into (IMO) ethically grey area in terms of drug pricing & marketing; on the one hand, it is (was?) priced much higher tha…

Naproxen (anti-inflammatory) isn't the kind of thing that you want to be on long-term, if it can be avoided, either. I have just been diagnosed with autoimmune psoriatic arthritis. I had three months of Naproxen, which made it possible to walk a couple of miles each day, but they were basically handed out as a "Here, this should take down the inflammation, now wait for your specialist appointment." Having said that,…

You may want to look into Taltz. It has really helped me, and practically no side effects aside from some injection site reactions.

If your insurance won't cover it (mine wouldn't without trying older ones with way worse potential side effects) the drug company offers a program that only requires a $25 copay.

Re: Ask HN: Has anyone undergone stem cell treatment for auto-immune disease?

#99

Earlier quoted context omitted.

It can absolutely make things better. I have received lots of good medical advice in this way, with the philosophy that asking alone can't hurt. However I have also weighed the advice as to possible risk. In addition I've tried lots of things that didn't work for me, like diets, sleep patterns, and even some medications. IMO in order for quality of care to improve across the board, it's important to acknowledge that…

It can also make things actively worse - it's not just additional information, but potentially disinformation.

They've asked for help in narrowing a field of information before they explore further. They're not asking for a final direction that they will blindly take.

Re: Ask HN: Has anyone undergone stem cell treatment for auto-immune disease?

#100
Hi. I have AS and went from 9.5/10 to 0.1/10 with diet. Why not just continue with the diet? It has zero negative side effects and is free. Would love to learn what you have done to change your diet. Maybe I can help you with the final tweaks.
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