I have been hearing about and reading about an herb called Carnivora. It is advertised to help one's immune system with no side effects. Sounds too good to be true, but it is tough to sit and wait for the nerves to heal. Just looking for something to speed up the process.
No, sorry, Haven't even heard of it.
Looked on research sites, found there is only one company selling it, and they hike the prices of other "miracle cures" on their site, buch as vitamin B dops, and they also sell DMSO {Dimethyl sulfoxide) which is an industrial solvent that made a big splash (then crash and burn!) in 1979 to 1980.
DMSO allegedly increases epidermal absorption of essential oils, etc. Problem is that DMSO is by nature, a chemical by-product.
Just in case you think of using DMSO with Carnivora, here are some DMSO side effects as listed on WebMD::
Some side effects of taking DMSO by mouth or applying it to the skin include skin reactions, dry skin, headache, dizziness, drowsiness, nausea, vomiting, diarrhea, constipation, breathing problems, vision problems, blood problems, and allergic reactions. DMSO also causes a garlic-like taste, and breath and body odor.
As for Carnivora, it's derived from the "Venus Fly Trap plant, which in itself is kind of gross because the plant traps and digests live insects including flies (disease ridden!) and many other insects.
IMHO, if you use a product to BOOST your immune system, logic dictates that you could make your CIDP worse, because the antibodies produced by your immune system would also be "boosted" which could cause more of the nerve-damaging antibodies to be produced.
I would imagine that if you had Primary immune deficiency, you would want to boost your immune system, but IMHO you are potentially playing with fire. Also, do you know what drug interactions and side effects occur with Carnivora?
None of the products on the Carnivora website are FDA-Approved, except maybe the vitamins.
Nobody here can tell you what to do, but it would be wise to ask your MD and disclose each of your medications to him, so he/she can look-up the active ingredients in the Carnivora.
There are no peer reviewed articles on Carnivora on Pubmed, so it may be hard to find any information on active ingredients.
Trusting I don't hurt your feelings but I'm not sure this stuff is going to be good for you, do nothing, or worse harm you!
I hope you start feeling better soon.
I have moved this discussion to Complimentary Therapies as there is no evidence based materials on this therapy.
The University of Maryland has an extensive data base of most all of them:
Migratory Coconut said:
No, sorry, Haven't even heard of it.
Looked on research sites, found there is only one company selling it, and they hike the prices of other "miracle cures" on their site, buch as vitamin B dops, and they also sell DMSO {Dimethyl sulfoxide) which is an industrial solvent that made a big splash (then crash and burn!) in 1979 to 1980.
DMSO allegedly increases epidermal absorption of essential oils, etc. Problem is that DMSO is by nature, a chemical by-product.
Just in case you think of using DMSO with Carnivora, here are some DMSO side effects as listed on WebMD::
Some side effects of taking DMSO by mouth or applying it to the skin include skin reactions, dry skin, headache, dizziness, drowsiness, nausea, vomiting, diarrhea, constipation, breathing problems, vision problems, blood problems, and allergic reactions. DMSO also causes a garlic-like taste, and breath and body odor.
As for Carnivora, it's derived from the "Venus Fly Trap plant, which in itself is kind of gross because the plant traps and digests live insects including flies (disease ridden!) and many other insects.
IMHO, if you use a product to BOOST your immune system, logic dictates that you could make your CIDP worse, because the antibodies produced by your immune system would also be "boosted" which could cause more of the nerve-damaging antibodies to be produced.
I would imagine that if you had Primary immune deficiency, you would want to boost your immune system, but IMHO you are potentially playing with fire. Also, do you know what drug interactions and side effects occur with Carnivora?
None of the products on the Carnivora website are FDA-Approved, except maybe the vitamins.
Nobody here can tell you what to do, but it would be wise to ask your MD and disclose each of your medications to him, so he/she can look-up the active ingredients in the Carnivora.
There are no peer reviewed articles on Carnivora on Pubmed, so it may be hard to find any information on active ingredients.
Trusting I don't hurt your feelings but I'm not sure this stuff is going to be good for you, do nothing, or worse harm you!
I hope you start feeling better soon.
No feelings hurt here. Had similar logical conclusion.
My biggest frustration is that there is, it seems, nothing we can do but sit around a hope that the IVIG will bring us back to "normal." Hoping to find something that I can do to help it along.
Thanks for the reply.
Stiffback,
I'm with you. Have been on IVIg for quite a while, now. When I'm close to needing my next infusion (3 week intervals), I "crash and burn". Legs and arms get weaker, fatigue becomes excessive, etc.
I did have a medi-port implanted after the peripheral IV's collapsed all my veins from chemical phlebitis, and it's the best thing I think I've had done to make the infusions less painful and just easier to deal with. A quick through the skin and into the port with a "Huber" needle, and they can start the show.
No more probing around in my arms, hands, and even legs for a "good IV vein".
I had a follow-up EMG at 3 years just a few years post-diagnosis a few months ago, and even though I still have a great deal of trouble walking due to autonomic neuropathy, and axonal damage/peripheral neuropathy, my neuro tells me that my motor neuron pathways in certain nerves in my legs have benefitted from the IVIg therapy.
I feel about 25% less weak in my legs overall, but that's the IVIg giving my body a chance to heal the motor neurons by keeping my immune system from producing too much of the damaging antibodies that cause the myelin sheath damage.
So, the gains, if they are to be had, seem incredibly slow and you might not even notice them, until you think back over the past few years and remember how bad things were before you spent a lot of "quality time" with your IVIg therapy.
Sure, it's a stop-gap measure, but it's what we CIDP patients have (and I find it's better than prednisone/steroids and less invasive than plasmapheresis, but it's not for everybody, and everyone presents differently with CIDP, and some people don't respond to IVIg at all, while others have a rapid recovery).
It was good "talking" with you, and I hope you experience some gains in functioning, even if (at first) they are "only on paper" when your MD repeats your EMG/NCV studies. Then you know you'll be able to hold-on to some of those neural gains if you follow-up with physiotherapy and gait training if needed.
Another "talk to your doctor" situation...but if you aren't experiencing or "feeling" the effects of IVIg within a few days of your infusions, then keep in mind it is quite common to change brands of IVIg until you hit on the right one for your body chemistry. I'm on Privigen, and have been for about 3 infusions, now.
The company that makes Privigen has technology to filter-out the IGa, which causes many of the side effects in other products which are not "Low-a", which basically causes immune system irritation/activation and can add to side effects.
Just some thoughts, as I cannot sleep again tonight. Had infusions over the last two days, and the solu-medrol they need to give me to keep the headaches and hives at bay wire me out like a high tension power line!
Oh, well. Sleep comes later. For now, my "therapy" is trying to help people in need, who share this disease. I do hope some of my experiences have helped you out.
Migratory Coconut said:
Stiffback,
I'm with you. Have been on IVIg for quite a while, now. When I'm close to needing my next infusion (3 week intervals), I "crash and burn". Legs and arms get weaker, fatigue becomes excessive, etc.
I did have a medi-port implanted after the peripheral IV's collapsed all my veins from chemical phlebitis, and it's the best thing I think I've had done to make the infusions less painful and just easier to deal with. A quick through the skin and into the port with a "Huber" needle, and they can start the show.
No more probing around in my arms, hands, and even legs for a "good IV vein".
I had a follow-up EMG at 3 years just a few years post-diagnosis a few months ago, and even though I still have a great deal of trouble walking due to autonomic neuropathy, and axonal damage/peripheral neuropathy, my neuro tells me that my motor neuron pathways in certain nerves in my legs have benefitted from the IVIg therapy.
I feel about 25% less weak in my legs overall, but that's the IVIg giving my body a chance to heal the motor neurons by keeping my immune system from producing too much of the damaging antibodies that cause the myelin sheath damage.
So, the gains, if they are to be had, seem incredibly slow and you might not even notice them, until you think back over the past few years and remember how bad things were before you spent a lot of "quality time" with your IVIg therapy.
Sure, it's a stop-gap measure, but it's what we CIDP patients have (and I find it's better than prednisone/steroids and less invasive than plasmapheresis, but it's not for everybody, and everyone presents differently with CIDP, and some people don't respond to IVIg at all, while others have a rapid recovery).
It was good "talking" with you, and I hope you experience some gains in functioning, even if (at first) they are "only on paper" when your MD repeats your EMG/NCV studies. Then you know you'll be able to hold-on to some of those neural gains if you follow-up with physiotherapy and gait training if needed.
Another "talk to your doctor" situation...but if you aren't experiencing or "feeling" the effects of IVIg within a few days of your infusions, then keep in mind it is quite common to change brands of IVIg until you hit on the right one for your body chemistry. I'm on Privigen, and have been for about 3 infusions, now.
The company that makes Privigen has technology to filter-out the IGa, which causes many of the side effects in other products which are not "Low-a", which basically causes immune system irritation/activation and can add to side effects.
Just some thoughts, as I cannot sleep again tonight. Had infusions over the last two days, and the solu-medrol they need to give me to keep the headaches and hives at bay wire me out like a high tension power line!
Oh, well. Sleep comes later. For now, my "therapy" is trying to help people in need, who share this disease. I do hope some of my experiences have helped you out.
MC,
I feel bad even complaining as I have had no immobility issues. Maybe I got it early enough, but I have never lost my ability to walk. I had some serious balance issues and a few unexpected falls but never completely lost. My began in my hands and feet, moved to my legs, then to my shoulders and lower lip. Doc says my is mostly sensory nerves. "Best" kind to have; slowest to improve.
My IVIG treatments affects me the opposite: my symptoms get worse after the treatments. My joints and torso get real stiff and it is difficult/uncomfortable to move. Only feel real good when I lay down. I feel much better at the end of the 3 weeks before my treatments. I asked the doctor about this because you are not the only one who feels better after the treatments. He said that I must be reading something from the spokespeople for the drug company because many many people feel worse after the treatments. I have only had the headaches a few times. Once in the hospital, and they gave me some morphine thing. Good stuff!
I really can't tell if I'm getting better or just getting used to it. It has been 2 + years, and I can't remember feeling any different than I do now. Weirdest thing I have experienced.
I understand the sleeping issue. The first few months I didn't sleep at all. Didn't sleep well until I started taking an anti anxiety med. Doc says the drug doesn't help the symptoms but helps hide them. It works wells for me.
Here's to no more EMGs!
STIFFBACK