For Anyone Interested!
AnonymousNovember 20, 2011 at 10:55 pm
From a friend of mine:
I was going to wait to post this but no better time than the present…as most know I was diagnosed with a rare auto-immune disease at 37. I was in my prime, arguably the best physical shape of my life and living my dream in NYC. The disease is called CIDP-my body basically would attack itself and the primary target being my nervous system, starting from the extremities moving inward. The result being, tingling, numbing, motor loss, and the loss some of basic functions such as digestion,bowel, bladder, slowed breathing, swallowing, etc., everything we take for granted on a daily basis was affected. At my worst I would sometimes crawl up up 5th floor walk up, my right leg was barely functional and hands incredibly week. My core was in intense pain all the time. Over a period of 3-4 months I lost my life, my dream job at Cannondale Bicycle Corporation and suffered the worst discrimination. I also lost my ability to enjoy what I love most and that is athletic pursuits, I couldn’t really do much at all. It was arguably the darkest moment in my life, I was depressed, losing a different body function every few weeks and wanted to give up. For the next 3.5 years my life was tethered to a nurse every three weeks to receive live saving treatments called IVIG; 4 hours a day for two days. At first I would get violently ill from them, a couple times I ended up in the hospital as a result. As everyone in my world moved forward I had to watch life from the sidelines. The disease had periods of relapse and then remissions, but one thing remained constant I had to get treatments every 3 weeks or else I could barely function. I received 68 treatments and have had more intervenous lines in my arms that my veins couldn’t take it anymore. I thank God was aided my dear mother early on who I owe my life too. I was also aided by my attitude to NEVER QUIT!!! Even when hospitalized for 3 weeks I NEVER QUIT! It has been the most difficult challenge of my life to date. My nurse Jean-Noelle became family, my girlfriend Vanessa would sit with me through treatments, friends and neighbors would often lend support, other peers with the same disease would reach out as well and I am forever grateful. There is so much more to this experience that a book could probably be in order but I doubt anyone would be interested – hah!:) I am posting this tonight for a reason, not to share my story but to possibly help others with this disease or a similar auto-immune condition. By happenstance I came across a root, a Golden Root which has changed my life for the better and it’s called Tumeric. The active ingredient in Tumeric is Curcumin and it has been nothing short of a MIRACLE for me. I started taking Curcumin within 24hrs of a relapse 6mos ago and it stopped the disease in it’s tracks! I continued to take and no longer need infusions of IVIG every three weeks, fact is I haven’t had a treatment of IVIG, steroids or any other agent for over 6mos!!!! It has truly been a game changing-life changing MIRACLE for me!. My nurse can’t believe it and my neurologist fell off his chair when I shared the news! I still live with tingling but, I’m not complaining. Once in awhile still have small symptoms, but again not complaining. I am running every week, I am bench pressing 295lbs!., I am LIVING LIFE again. I am forever grateful to those that have been at my side along the journey, you know who you are!:). I have been humbled and have an appreciation for life that is unmatched! I feel like a CHAMPION! I used to feel sorry for myself, but now embrace life again! I can travel, I can do all things that I used to be able to do! My Neurologist wants to write about my experience in a Medical Journal. I am sharing this tonight as I truly feel Curcumin may help others. If you have a friend or loved one that is fighting something please be there for them and support them. I NEVER QUIT! NEVER, NEVER, NEVER QUIT! Always seek out answers and alternatives, because at the end of the day it’s your life! In closing I would like to extend Big Love to you all and God Bless. Write me any time with any questions and I will be happy to respond
Peace and Love!
and his girlfriend:
It still feels surreal ,it’s a true miracle !!!!!!! ♥
AnonymousNovember 21, 2011 at 8:24 am
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
AnonymousNovember 21, 2011 at 6:31 pm
[FONT=”Microsoft Sans Serif”]This is what my friend wrote about his protocol:
[I]Alice just saw this…..
6 months tumeric everyday and no IVIG, my neuro is excied as am I. Actually it feels normal to be normal. I most recently had a cold and then slight cidp will kick in, however, I just keep the curcumin protocol and literally the next dose gets rid of it for me.
Vanessa can testify that it has been a miracle for me
I knew within the first 48 hors that curcumin was working, actually less than that. I can expand further over the phone sometime. Life extension “super bio-curcumin” 400mg. I take 12 pills per day with food; game changer. not the 800mg with bioprine. the regulare super bio curcumin. I’m benching 295 and doing plyometrics and running 5k(twice) and eliptical 3-4 times per week.[/I]
[FONT=”Microsoft Sans Serif”]and… you can get them over the counter or on-line.[/FONT]
AnonymousNovember 22, 2011 at 11:03 am
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.
AnonymousNovember 22, 2011 at 1:12 pm
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.
November 22, 2011 at 7:56 pm
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.
AnonymousNovember 22, 2011 at 9:09 pm
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.
November 23, 2011 at 2:32 am
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.
AnonymousNovember 23, 2011 at 9:28 am
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.
November 23, 2011 at 11:41 am
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.
AnonymousNovember 24, 2011 at 11:44 pm
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.
AnonymousNovember 25, 2011 at 9:14 am
[FONT=”Microsoft Sans Serif”]Jeanebell1 — Thank you for your comments. While Curcumin worked for my friend, it may not work for everyone. But, certainly its anti-imfammatory compounds are pretty well established. I’ll try show some documented studies that show its efficacy along with its low toxicity, even in very large doses.
This link shows some evidence regarding larger doses:
Below, I have found some links/articles that speak of Curcumin and its effects in terms of being an anti-imfammatory. The 1st article I site the link and paste the contents of the study. The rest of them I include only the link.
Food for thought.
Again, It is not I who reached longterm remission with Curcumin, it is a friend of mine who doesn’t post here. I did take it for a while at 10,000 mg per day. I personally suffered no ill effects.
J Altern Complement Med. 2003 Feb;9(1):161-8.
Safety and anti-inflammatory activity of curcumin: a component of tumeric (Curcuma longa).
Department of Stomatology, University of California, San Francisco, CA 94143-0658, USA. [email]email@example.com[/email]
Tumeric is a spice that comes from the root Curcuma longa, a member of the ginger family, Zingaberaceae. In Ayurveda (Indian traditional medicine), tumeric has been used for its medicinal properties for various indications and through different routes of administration, including topically, orally, and by inhalation. Curcuminoids are components of tumeric, which include mainly curcumin (diferuloyl methane), demethoxycurcumin, and bisdemethoxycurcmin.
The goal of this systematic review of the literature was to summarize the literature on the safety and anti-inflammatory activity of curcumin.
A search of the computerized database MEDLINE (1966 to January 2002), a manual search of bibliographies of papers identified through MEDLINE, and an Internet search using multiple search engines for references on this topic was conducted. The PDR for Herbal Medicines, and four textbooks on herbal medicine and their bibliographies were also searched.
A large number of studies on curcumin were identified. These included studies on the antioxidant, anti-inflammatory, antiviral, and antifungal properties of curcuminoids. Studies on the toxicity and anti-inflammatory properties of curcumin have included in vitro, animal, and human studies. A phase 1 human trial with 25 subjects using up to 8000 mg of curcumin per day for 3 months found no toxicity from curcumin. Five other human trials using 1125-2500 mg of curcumin per day have also found it to be safe. These human studies have found some evidence of anti-inflammatory activity of curcumin. The laboratory studies have identified a number of different molecules involved in inflammation that are inhibited by curcumin including phospholipase, lipooxygenase, cyclooxygenase 2, leukotrienes, thromboxane, prostaglandins, nitric oxide, collagenase, elastase, hyaluronidase, monocyte chemoattractant protein-1 (MCP-1), interferon-inducible protein, tumor necrosis factor (TNF), and interleukin-12 (IL-12).
Curcumin has been demonstrated to be safe in six human trials and has demonstrated anti-inflammatory activity. It may exert its anti-inflammatory activity by inhibition of a number of different molecules that play a role in inflammation.
December 8, 2011 at 10:04 pm
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.
December 14, 2011 at 10:42 pm
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
June 16, 2016 at 8:08 am
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
June 16, 2016 at 9:02 am
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
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