For Anyone Interested!

Have read on tumeric.

GBS 2007, improved after 16 treatments, short walks with cane.
Gotten worse over time, no walking at all, in power chair.
Two Neurologist say it’s not CIDP.
Can’t take tumeric with blood thinning medication I am on.

Thanks for sharing your story
Shirley

What is the method of prescribed treatment with curcumin, and where is the product obtained?

Thanks for posting the info. Alice. Sounds well worth exploring for my husband.
Laurel

You can find this exact supplement on Swanson vitamins website. [url]www.swansonvitamins.com[/url]. Best website for supplements at a discount!!

I have been ordering from this site for over a year and the prices are better than the stores.

Thanks for answering, Alice; there’s a health-food store in the city nearby, maybe I can check it out there. I’v been taking prescribed thyroid pills and asthma steroids for many years, and have other health issues, so I don’t know if there would be any adverse reactions. Because if this supplement is working for your friend, it must be pretty powerful. The herb family contains some very powerful medicines, but they have to be carefully administered, because after all, they are medicines. I used to take ginger for upset stomachs because of the bad water in our town, even though I use reverse-osmosis. But since the past 4 years of GBS, I can’t tolerate it now, it causes my nerve endings to burn more.
I think more info on the product would be best for me; also whether or not it’s affordable. These health supplements are usually extremely expensive.
I’m glad to hear that it works for your friend; it would be wonderful if the answers to our illness were obtainable for all of us.

I do want to caution that a friend of mine had increased stomach problems with turmeric. He also said that he has read that it can have detrimental side effects. It can cause irreversible auto immune responses because it is immunemodulatory. But this is most likely due to high doses. So if you are going to try this, you might want to start out at the lowest dose possible. I had considered trying it, but have reconsidered in light of this.

Interesting that you’re taking tumeric and your symptoms have considerably improved. Congrats! I am truly happy for you.

When I was diagnosed with CIDP in May I immediately got in touch with my naturopath. He has helped me in the past with a host of problems so I again put confidence that he could help. He had never heard of CIDP and could make no promises, but asked that I be steadfast, consistent with my treatment plan, and remain positive.

I’m on a slew of homeopathic drops, as well as capsules. One of the drops happens to be tumeric. Therefore, your results are very promising.

I’m feeling dramatically better as far as pain is concerned. Prior to alternative therapy I would tremble due to the horrid pain. I’ve been off neurontin or any of the other heavy meds they placed me on. I’m also much stronger than I was, and have more stamina than before.

Despite the tumeric and other natural products, however, I’m still very wobbly on my feet, and my equilibrium is way off. I require a wheelchair outside the home, and a walker indoors because my legs still give out on occasion and down I go. That in itself is so disheartening to me, as I want to walk so badly.

I have many other ongoing symptoms from this disease such as choking and chronic coughing (anyone else experiences this?) that has not improved whatsoever with the tumeric or other products. I was hoping they would make a difference in this respect, but so far NO improvement.

At this juncture I’m seriously considering starting the IVIG. I’m only fifty and cannot see myself in a wheelchair for the next thirty years. I have one huge concern, though. As I read the warning labels on the various medications I notice possible infectious blood diseases. Does anyone here have comforting words about this fear of mine? Has anyone had any bad experiences or know of anyone contracting a disease from these infusions?

So sorry to have gotten off the subject. I am very happy for you, and hopeful one day I too will be active once again. As a mom to an almost thirteen year old daughter much energy, wellness, and stability on my feet to keep up is definitely required.

To lovemotherhood – My daughter was 4 years old when she was dx’d with CIDP. I too was worried about possible blood borne infections from the IVIG – so I did my research. I learned that IVIG has been used since the 80’s. There was 1 batch in 89 or 90 where people came down with Hepatitis after their infusions – it was 1 bad batch of IVIG. Since then the FDA & all IVIG manufacturers changed the cleaning process & there have been ZERO reports of a blood borne illness transmission from IVIG. Also the screening process for plasma donors has become more stringent.

I know the IVIG manufacturers take it VERY seriously. Emily had a Broviac catheter (a tube in which she could receive her infusions through) in 2006. It became infected & our home care company was required to contact Baxter, the makers of her IVIG. Baxter then did interviews with our nurse & the dr’s at the hospital to make sure there was no correlation with their IVIG. There were pages upon pages of correspondence.

I am all for alternative medicine. I think it’s great & it certainly has it’s place. However, I don’t think it’s for everyone or for every illness. If you are continuing to deteriorate & you are experiencing choking & chronic coughing – I would say it is time for you to move on to IVIG or another therapy. I do not think the alternative route is working for you.

It sounds like your CIDP has possibly progressed to your autonomic nervous system – hence the choking & coughing. This is very dangerous & I would advise you to seek treatment ASAP.

Kelly

Kelly, thank you very much for your reply. I was fervently hoping you’d respond. I’ve gleaned a wealth of knowledge by reading your posts, and have drawn such inspiration from Emily’s courageous journey, as I’ve said to you before.

Until now I’ve been sitting on the fence about IVIG due to my fear of contracting yet another illness. But after two recent episodes of choking to the point of passing out, I have come to the conclusion that this is no longer an option; but a necessity. I can still hear my daughter’s frantic voice yelling in the back seat for my husband to pull over when she realized I could not catch my breath. That alone has driven me to take further action.

It has only been in the last week that I’ve come to realize the choking and chronic cough are symptoms of the CIDP. Right? I was reading an archival post in this forum where a doctor writes about bulbar palsy as being a by-product of this disease. It was then I discovered these last thirteen years of constant coughing and choking are directly related. And that is why I have made a final decision to proceed with the IVIG.

How I wish my neurologist had told me this. In fact he hasn’t mentioned ANY of the symptoms. Everything I know I’ve learned here. Thanks to all of you I’ve slowly been piecing it all together. I’m so grateful.

But, what do you mean by it possibly progressing to my autonomic nervous system? What does that mean exactly? Sorry but my knowledge is very limited in this respect. I’d really appreciate a thorough explanation.

Thanks so much, Kelly! And two thumbs up for Emily’s progress. One day I’ll be on roller skates, too, and doing the hokey pokey. Yep, I can see that happening. But first I have to take the first step on the long road that lays ahead of me.

Claudia

I have to make this quick. Emily is getting a treatment today & the nurse will be here any time now.

The autonomic nervous system controls your heart rate, swallowing, breathing, digestion, etc. Basically every function of your body that you don’t have to think about controlling. It sounds, to me, like it is possibly being affected if you are experiencing chronic choking & coughing.

In the weeks before Emily’s symptoms were at their worst (and right before she as hospitalized) she would choke on her food. It was like she had trouble swallowing. To this day she’s very picky about what kinds of food she eats – she doesn’t like anything that needs a lot of chewing. I think it scared her to the point where she’s still holding onto it subconsciously. She also developed digestion issues. The dr’s at the hospital agreed that her autonomic nervous system was affected.

Kelly

How frightening.

I do feel much more confident about receiving the IVIG. I did not realize the manufacturers take such steps to assure the antibodies are not infected. Each time I read the warning label, it does scare me into a panic, though. No doubt this is to protect themselves legally.

I contacted Dr. Dyck’s office. The person I spoke to agreed to ask the doctor about someone in our area who specializes in CIDP. My neurologist, by the way simply told me to see my PCP and let her handle the complexity of getting me approved for infusions, dosage recommendations, etc. In other words, he’s washed his hands of it stating it’s an issue with Humana. I question if my PCP will even know what CIDP is.

Thank you!

Alice, thank you for posting this. I try to keep an open mind to everything. I have read about others taking Turmeric, and they, too, felt it had positive results. I feel that way about ALA (Alpha Lopoic Acid). This took almost two months to feel the improvements. But it was amazing for me. I still have some symptoms that I do not like and I’d like to find something to help as pain meds do nothing for nerve pain. My nerve pain is not the normal pain. It is like buzzing/tremors/shaking/jello. I really don’t have pain most of the time- except with an ankle I fractured in March. I think my best option may be the SCT. But as long as I am showing improvement with a treatment- they are not :confused: able to take me as a patient.

hello .. iv been living with cidp for over a year and a half now. im getting 100g ivig every 2 weeks. im interested in startin curcumin , how many mg’s did Dean start with and what sort of maintence dose is he on ?

Thanks Reed

Alice has the doseage and brand used on the previos page of this post. You can get that exact same kind she posted from swanson vitamins online.
from what I’ve found online, there has been some success in MS patients. I have been trying it–the highest I can get is 1600 g (4 tabs) twice a day, i tried a little higher dose but got nauseated. might try to go a little higher once my body gets more used to it in a week or so.
Its not cheap—around $25.00 a bottle, swanson was the cheapest i could find. Plus i have been purchasing vitamins/supplements from them for a while and trust them.

Lori222

hi Reed here, have you noticed any positive effects with the curcumin yet. ive been a week now on 3600mg daily and havent noticed anything helpful yet.

Reed

i stayed on it for a little over 2 weeks, got so i could tolerate 4000 mg–took 2000 twice a day. i noticed an increase in numbness in my feet, and fatigue increase.
I stopped taking it just 2 days ago. Did not seem to be helping me in the time that i took it—but then again it really isnt a good time for me to decide, i just finished a 16 week ivig regimen and am coming up to my one month without it point– so the numbness increase could be related to that.
im going for an emg/ncv friday and make decisions on my next treatment– so decided to forgo the turmeric for now.
best of luck with it Lori

Hi Alice, how is your boyfriend doing now? Is he still taking curcumin? How much of it everyday? My husband is suffering from CIDP so we have also started curcumin after reading your post.

You can try turmeric with krill oil. My wife with CIDP but she see a lof of improvement with this regime. She currently takes Gaia herb turmeric 2 capsules per day or Life extention curcumin with krill oil( 500 mg twice per day) and prednisone and cellcept. No side effect found. I hope we can tape off prednisone and cellcept soon.
When she take single curcumin or krill oil no help

You can try turmeric with krill oil. My wife see a lof of improvement with this regime. She currently takes Gaia herb turmeric 2 capsules per day or Life extention curcumin with krill oil( 500 mg twice per day) and prednisone and cellcept. No side effect found. I hope we can tape off prednisone and cellcept soon.
When she take single curcumin or krill oil no help