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Ashleybritton
09-09-2012, 10:13 AM
Don't laugh at me, but has anyone tried helmenthics? In my heart I know there isn't going to be a magic cure, but I'm still looking. :-)

Derrie
09-09-2012, 10:22 AM
I don't think the concept is crazy. (For those who don't know, helminthic therapy is deliberate infection with intestinal hookworms to treat autoimmune responses in a person's body). There's definitely some science behind it and behind the "hygiene hypothesis" generally. Two things to keep in mind:

(1) I don't think there have been any studies about helminthic therapy in relation to lupus. Most of the studies are related to IBD like ulcerative colitis and Crohn's, and celiac disease.

(2) You can't get helminthic therapy in the US. It is not approved by the FDA. So, trying the therapy (assuming you're in the US) would involve getting a local doctor on board with monitoring your therapy, travel out of the country for "infection" with the worms, and paying for all of this out of pocket to boot. Or finding a study, I suppose. I think some studies have been done in the US.

Anyway, that is the sum total of everything I know about helminthic therapy.

Derrie
09-09-2012, 10:34 AM
Oh, and I think most studies have found that helminthic therapy is not a cure for autoimmune disease. For people it has helped, it has only helped as long as they were infested with the hookworms or the hookworm eggs. Once the worms/eggs were gone, the autoimmune symptoms returned. So it really is just that, if it works: a therapy -- like many of the drugs people with AI disease take -- not a cure.

There is no magic cure right now for AI disease, but I am hopeful that with advances in gene therapy, one day there might be a real cure for AI diseases. Wouldn't that be cool?

steve.b
09-09-2012, 07:17 PM
i am open to many alternative suggestions.
i take some alternative medicines myself.......

my understanding of helminthic is limited.
my understanding of our imune system is slightly better.

i do not see how our imune system can be helped by helminthic.
i can see how things like ibs can be helped, (if it is germ induced).
but we cause ibs by inflamation when we have lupus.
inflamation can not be cured by helminthic.

i believe it is possible to do more harm if used incorrectly.

please study the subject before you decide whether or not to try it.

Ashleybritton
09-09-2012, 07:51 PM
I really appreciate everyone entertaining my craziness :-). I'm swimming in research as I've just been diagnosed. I'm sure this is a phase that will pass as the shock wears off. I appreciate everyone being so kind. It's helping me transition into my new normal much better than what it would be without everyone's help. Thank you.

Derrie
09-09-2012, 08:03 PM
Ashley, I don't think you're crazy! I don't know about everyone else, but I've been there. And research can be good and empowering-- you just need to do it, like everything, in moderation. You've been given a hard pill to swallow, this adjusting to chronic illness. Don't feel self-conscious about bringing things up here. Part of the purpose of this forum is to talk about those things you've read about or heard about, and then draw on the wealth of experience here. It's a resource like no other.

And you will start to get used to the new normal. It doesn't mean life is always grand, but you'll learn to navigate it. And of course we're here to help. (I just started getting sick about a year and a half ago, and while I may sound all cool and calm right now, it's the people with years -- even decades -- of experience with AI issues under their belts that have helped me figure out how to adjust and soldier on.)

magistramarla
09-09-2012, 09:03 PM
Just remember - don't be taken in by alternative "cures" that "require" that you stop taking your prescription meds. The founder of this site lost her daughter because of just that.
Some alternative medicines can be downright dangerous, so always check with your doc about drug interactions, etc.

My wonderful rheumy back in Texas was adamant that I start taking fish oil. She thought that any anti-oxidant supplements couldn't hurt, so I also take Resveritol.
I was already taking glucosamine/condroitin for my joints, and she was enthusiastic about that, too.
SJS and Plaquenil have been hard on my digestive system, so I take some aloe vera juice with tart cherry juice (helps inflammation & pain) every day.
I also take a cranberry supplement every day (suggested by my PCP years ago) and I've had a lot less UTIs.
Many of us here have been prescribed vitamin D, since people with AI issues seem to be low on it.

I can't handle sleep aids, so the rheumy suggested Melatonin. Warning: Many Lupus patients have problems with it! I don't have problems, and it does help me to sleep better.

So, complementary treatments can be good things - just make sure that your doc knows and approves.
Hugs,
Marla

tgal
09-09-2012, 09:13 PM
Marla said exactly what I was going to tell you. Lupis a rarely a death sentence now because of the meds that we take HOWEVER too often people die because they stop taking their meds to try natural or unproven cures. That is actually why this site was founded. Our wonderful leader lost her daughter for that very reason. While we are all for being your best advocate and learning all that you can we will always stress that the only real way to keep Lupus under control is with proven meds. That is what will enable you to have a long, rich life