Alternative therapies

    • Anonymous
      February 6, 2010 at 1:55 am

      I guess it is once again time to venture into this area. Many of us take a supplement that helps us, or at least we think it does. Many of us swear by what we take.

      I think a couple of ground rules need to be observed:
      First NO SALES, I think that is a forum rule anyway.
      Second Nothing illegal,
      Third, No judging anybody for what they do
      Fourth, We are sharing experience, not telling anybody what to do

      Just tell us what you take, or do, and how it helps you deal with your CIDP

      Personally… I thoroughly enjoy a mint tea mixture. I grow my own mint, spearmint, peppermint and dry it each spring and fall. that gives me more than enough dried leaf to flavor my tea. I find that it relaxes me and keeps me focused better through the day. There are lots of good natural things in the peppermint and spearmint The peppermint is supposed to calm the upper GI tract and irritable bowel syndrome as well as help with headaches. Spearmint is a mild stimulant and the aromatic attributes tend to be calming. I use Bee Balm(Oswego) as my main mint. Besides the aromatic calming effect, it is good for the GI tract, helps relieve cramps.

      I add the mint mixture to a regular tea bag and steep for about 20 minutes for a good aromatic flavor. I always feel better after a couple of cups in the morning, it isn’t as hard on my stomach as coffee.

      Sometimes I also add St John’s Wort to the mixture. All of these plants I grow in my herb garden. I have been tending the garden for about 10 years now. The gardening is theraputic, the herbs I grow I use for tea and for cooking, so it is functional as well.

      I am sure many of you have homegrown remedies that help you deal with CIDP.

    • Anonymous
      February 6, 2010 at 9:07 am

      Thank you Dick for the info, I love to garden although I have limited myself on what I can do now. This year I was planning on trying herbs as my flower garden is FULL and I will definately be trying your remedy as a relief for my IBS. Thanks againg and happy spring-it will come won’t it?
      Ms. Judy

    • Anonymous
      February 6, 2010 at 9:38 am

      [I][COLOR=”Navy”]the time may come when we are obliged to try alternative therapies?

      I was given info by someone else here to try Alpha Lipoic Acid ( ALA ) and it has made tremendous difference for me. It is being given formal testing right now @ the ( State of ) Oregon Medical University, though the test is @ a dose that is double what I’m using. It’s been used for many years in Europe for such disorders as ours.

      I have condensed an article that came in my e-mail this morning. I’ll add the URL for anyone who wishes to read the article in its entirety. The last couple paragraphs are the real gastric-acid-producers! 😮 [/COLOR][/I]

      [url]http://www.smh.com.au/national/the-blood-lottery-so-how-sick-are-you-20100205-niqf.html[/url]

      The blood lottery: so how sick are you? JULIE ROBOTHAM
      February 6, 2010
      Plasma is so useful in treating diseases that almost everyone wants it – and that’s the problem, writes Julie Robotham.

      How, asks Andrew Kornberg, do you assign a value to helping someone walk again? ”When you’ve seen a person who’s been in a wheelchair become a person who can work and contribute … it’s clearly what we should be doing,” says Associate Professor Kornberg, the head of neurology at Melbourne’s Royal Children’s Hospital.

      He is referring to the increasing use of intravenous immunoglobulin (IVIg) therapy for nerve and muscle disorders. Taken from donated blood plasma, the immunoglobulin component which fights infections has long been used as a substitute for people who do not produce adequate immune factors of their own.

      More recently, doctors have learnt that a blast of IVIg can change the immune response of people whose own systems have gone awry – people with auto-immune diseases, including many of the neurological problems that Kornberg treats.

      Spectacularly successful in some conditions and light on side-effects, if IVIg were a pharmaceutical it would be a blockbuster. But its source in the blood bank means its supply is finite. Ultimately, if one group gets it, another may miss out. ……….

      In its 2008-09 report, the National Blood Authority noted that ”any changes in the development and use of IVIg can potentially have a large impact on Australia’s blood budget and on the pressures in the system for collection of plasma”.

      From a standing start, chronic inflammatory demyelinating polyneuropathy (CIDP) has become the biggest single condition in which IVIg is used. ……….

      Meanwhile, new potential uses for IVIg keep on emerging. Just last month, Australian doctors published a paper showing it may reduce the severity of a rare form of anaemia found in babies, caused by the mother’s immune response to foetal blood.

      But the big one is still to come. [B][U]Baxter Healthcare Corporation in the US will complete a trial of IVIg in Alzheimer’s patients this year.[/U][/B] In theory, its immune-resetting function could help the body fight the protein plaques that clog the brains of people with Alzheimer’s.

      [B][U]If it partially reverses the disease or even halts it in its tracks, then all bets would be off, since Alzheimer’s – affecting one in 100 people – is hundreds of times more common than the neurological disorders that are already putting the IVIg supply under such strain[/U][/B]

    • Anonymous
      February 6, 2010 at 10:43 am

      Rocky

      I’d like to hear more about your experience and thoughts with Alpha Lipoic Acid and i have read about that it’s great at firing up the dead neurons especially with neuropathy however i just wonder if for those of us where IVIG doesn’t help and so our myelin never have a chance to repar could still benefit from it or not?

    • Anonymous
      February 6, 2010 at 12:23 pm

      I was always told by my doctor that there was nothing you could take that would cut into or ease extreme numbness, so I still suffer with what can be teeth clenching bouts.

      Has anyone found anything that can help you live and function better with the numbness? For me, the numbness is just as severe as pain.

    • Anonymous
      February 6, 2010 at 2:29 pm

      I have found that Yoga, when I force myself to do it, helps tremendously. Had it recommended by several docs, but being a “guy”, I always resisted. When I get stressed, it helps a LOT! I also bought a couple DVD’s that allow me to do it in the privacy of my own home.

      I’m also trying to find a reputable acupuncture clinic in my area. I’ve tried it once or twice for other things, and seemed to have moderate results, so I’m willing to try it for this.

      Elmo

    • February 6, 2010 at 2:34 pm

      If anyone is considering growing mint, be careful!! It is WILD!!! I used to do the gardens at the elementary school and one year a mom decided to do an herb garden. The mint took over everything. It grows well in pots, or those raised garnes you can get at Sams. If the posts get too overgrown, it jumps to the grass and spreads like crazy. It does smell good when you cut the grass!!! The kids totally got a kick out of picking it and smelling it!! I have to admit I was somewhat sceptic about this supplement stuff, but I am changing my mind in light of my new obsession with this leaky gut stuff. We go to the natropath next Sat., we will see what he says!
      Dawn

    • Anonymous
      February 6, 2010 at 2:51 pm

      Another thing about mint…grow it in your garden, it attracts bees like crazy. Not an issue for me, but was amazing to watch!

    • Anonymous
      February 6, 2010 at 3:57 pm

      [QUOTE=Elmo]Another thing about mint…grow it in your garden, it attracts bees like crazy. Not an issue for me, but was amazing to watch![/QUOTE]

      [I]Whoops! That’d be a big issue for me. I have to carry an Epi-Pen … have never had to use it — knock on wood! Think the bees/wasps know that? [/I] 😀

    • Anonymous
      February 6, 2010 at 5:02 pm

      Ryan just started taking proboitics last week, so it was pretty funny to see a thread on probiotics. He is taking it so that his digestive system gets into tip top condition.According to the article that teh thread was about it is suppose to help CIDP. Our chiro wants him to take fish oil too.

    • Anonymous
      February 7, 2010 at 12:00 am

      Fish Oil has a number of supporters. Alpha Lipoic Acid comes recommended from several people as well.

      Dawn, There is a book, called PDR for Herbal Medicines. It is written by the same folks who put together the PDR for Rx drugs. They take all of the herbals and break them down into their constituent parts. They explain the “traditional” use, the “accepted” use and the “scientific” uses. Many times, they differ greatly.

      And yes, mint, and all of its variants are quite aggressive as plants go. I keep them in raised beds where they have their own room. I prune and thin to keep the “crop” healthy.

      About the bees, absolutely, the bees pollinate everything from the flowers to the tomato plants in my garden. I encourage them. I also respect the little buggers, they sting.

      Keep those replies coming

    • February 7, 2010 at 3:37 am

      I practice daily meditation. Get some good exercise evey other day and a little less on the days in between.
      I need lots of calcium and magnesium plus vitamin D3 to help prevent osteoporsis. This winter I added a high grade tasty Cod Liver Oil (Carlson’s).
      I don’t get vitamin D sunshine in the winter. I may switch to fish oil in the summer.
      I also take Udo’s choice oil blend for the essential acids. Cod liver oil has lots of essential fatty acids also.
      I have always loved yogurt so I make sure I get the best kind with all the right cultures to make sure I get the right probiotics. Some yogurt brands have the National Yogurt Association endorsement on the cartons which means they meet the criteria for live and active yogurt culture. Years ago in yoga class the instructor named the three most important cultures in good yogurt. Acidolphilus, bulgaricus, thermophilius, and lactobacillus. (forgive spelling). Not sure I remeber all the cultures, but I trust the Nat’l Yogurt Assoc. I like plain yogurt and now have switched to lowfat. You can add fruit or whatever flavorings if necessary and place in the blender. I avoid high fructose at all costs. I saw a video that convinced me that high fructose is worse than sugar. I even found HF in a salad dressing and other condiments.
      I read in an alternative new age medicine book about alpha lipoic acid and Acetyl L Carnitine for nerve pain. I take 1200 mg. alpha lipoid acid and 2000 Acetyl L Carnitine. I haven’t needed any pain meds for over a year now.
      They are doing a trial for CIDP and giving 1200 mg of Alpha Lipoic Acid. Go to Clinical Trials.gov
      Because of my sugar I have become gluten-free by default. It’s possible to have celiac disease without the gastric or bowel problems especially in us older folks. I have never been tested for celiac disease but the diet seems to make me feel better. There is also a gluten allergy and a gluten sensitivity which is not the celiac sprue (celiac disease).
      I feed my kitty kat Science Diet CD recommended by the vet and make sure to water with natural spring water which I drink also. The water here tastes terrible even with added lemon.

    • Anonymous
      February 7, 2010 at 12:16 pm

      I agree, Dick…bees are vital! I try to be very careful in my garden to protect them. I’ve never been bothered by them, but my wife, like Rocky, has to have an epipen near by at all times. I love to just stand and watch them! The bees that mint attracted, at least in my region, weren’t the typical “honey bees”…they were little black things, about the size of a horse fly. And they were aggressive! I’ve only seen one other plant that attracted more bees, and that was a pussy-willow that I planted many years ago. Every spring when that thing would bloom we’d have neighbors gathered around, amazed at the hundreds of bees swarming this one bush! But, as I said, they are vital, and I’ve noticed a serious decline in the number of bees in my garden every year. Very unsettling.

      As to HF Corn Syrup…I think it’s the scourge of civilization at the moment. You can’t hardly find products that DON’T contain it! When you start looking for it, you’re amazed!! Never imagined to find it in things like ketchup! I’ve read where some pretty nasty things are used to create it, like formaldahyde, etc. Just seeing those big, black train tankers roll by, with the words “High Fructose Corn Syrup” painted on them…hundreds of cars long…makes me shudder! We had to switch yogurt brands when we started being careful about it…it’s a prime ingredient in Yoplait. We prefer “Brown Cow” now, as it’s made with natural sugars. But, like I said, it’s hard sometimes to find something that it isn’t in. My wife has recently decided to try and eat “Greek” yogurt, which is supposed to be the “most natural”; I lived in Turkey for a year, and I can’t stand mediterranean yogurt unless it’s in a meal of some sort. Tastes more like sour cream than yogurt, to me. Can’t stand it plain, but she doesn’t mind it! 😀

      One concession I had to make…I do all the cooking in our home, and love to bake. I tried switching to organic sugar, and had all sorts of problems with my baked goods. Finally decided I had to switch back to the “refined” sugar for many baked goods. It’s more consistant, and the organic, with it’s little bit of molasses still intact, adds flavors that sometimes aren’t welcome.

      All in all, my wife and I try to buy products that are natural, and the best way for us to do that is to look for things that are made as close to home as possible. We love to support our local growers, and this often allows us fresher, more natural products. Sure, many things aren’t available year-round, but I’d rather do without than eat fruit that was picked long before it was ripe, on the other side of the world, then brought to my area and had to be “gassed” to make it look like it should. I work in the warehouse industry, and have many grocery chain customers. It’s eye-popping when you see the CO2 chambers that they drive the produce into, to force ripening. Just kinda makes you lose your appetite for certain things.

      Elmo

    • Anonymous
      February 8, 2010 at 2:06 am

      [QUOTE=codystanley]I was always told by my doctor that there was nothing you could take that would cut into or ease extreme numbness, so I still suffer with what can be teeth clenching bouts.

      Has anyone found anything that can help you live and function better with the numbness? For me, the numbness is just as severe as pain.[/QUOTE]

      The only thing that ever eased (and just a little bit) my numbness was gettin g into the swimming pool, and twirling my arms around underneath the water…
      Good luck, kittispitz

    • February 8, 2010 at 4:21 am

      I have been taking a mouthful of supplement pills for ages. I do not claim they are fixing my CIDP specifically but I do think they are keeping me as healthy as possible. My pill program has changed over the years as my symptoms have changed. (I have a previous post from May 20, 2006 that goes into a lot of detail.)

      Currently I am taking:
      1 – a high quality multi vitamin capsule
      2 – a commercial antioxidant blend tablet
      3 – a 330 mg calcium tablet with magnesium, phosphorus and vitamin D
      4 – 2000 units more of vitamin D3 because of low D in my bloodwork
      5 – a 500 mg omega 3 fish oils soft gel
      6 – a 500 mg glucosamine and MSM tablet
      7 – a 100 mg R-Lipoic Acid capsule (this form seems to be an improvement over ALA for me personally)
      8 – a 100 mg Coenzyme Q10 soft gel

      I also drink a glass of cranberry juice every day to counter act the evil side effects of prednisone.

      Supplements are not substitutes for healthy eating. Please research before you start a supplement program. Just because something is natural does not mean it is safe for your particular health challenges. Try to find a “licensed natural pharmacist” to assist you.

      Flossie

    • February 8, 2010 at 7:13 am

      Hi CodyStanley,
      I was reading where numbness is cause by poor circulation and that keeping the extremeties warm by soaking them in hot water or using a heating pad can help. Maybe leg warmers or warm clothing might help.
      The article also mentioned exercise and and I wouldn’t do much in your case probably, but start with a minute or two and then add one minute a week if possible. Maybe just walking with your walker in the house to some great music. Or maybe you could just sit and move your legs up and down and flap you arms around.
      These are just suggestions and I can’t guaranteee you will feel better if you try them. But if they work it would be great.
      Thank you for the Valentine gifs and have a wonderful holiday. Your gifs are the greatest!

    • Anonymous
      February 9, 2010 at 11:33 am

      Where can you find this Alpha Lipoic Acid and what does it help with?

    • February 10, 2010 at 5:27 pm

      Jessica,

      Alpha Lipoic Acid is a “recharger” for Vitamins C and E. If you take ALA then the E and C can do their specific tasks without having to do the ALA work as well. In Europe diabetic nerve pain is treated with 600 mg of ALA a day.

      I changed over to 100 mg R-Lipoic acid because it seemed to work better for me. The R stands for “right” and just means they flipped the chemical direction to make it more bio available. I purchase my pills over the internet.

      Remember that supplements should be a part of an overall health plan. Always ask your doctor before taking over the counter pills.

      Flossie

    • February 10, 2010 at 5:33 pm

      Flossie,
      How many pills do you take a day, are they taken all at once? Has the doc assured you they don’t interfere with ivig? We are seeing a natropath and when the blood/stool comes back, I suspect he will assign a regimen. I can’t find any info with regards to interaction w/ivig. Is it stressful for you to take all of the pills, do you think it would be for a kid? Do you get side affects from them, do you think Kev will be able to handle it?

    • February 10, 2010 at 6:56 pm

      Dawn,

      Yes indeedy, I swallow a boat load of pills everyday. Right now it’s just 8 with breakfast and 1 with dinner (in addition to my prednisone, Lyrica and nortyptilin) for maintainence. I increase certain pills depending on symptoms (R-Lipoic acid for foot pain, CQ 10 for dental work, MSM for skin problems, etc). When I was really run down and symptomatic I was taking even more pills with each meal. For a while I was also taking Grape Seed Extract a couple of times a day – for me it really helped with the zingies (didn’t do a thing for Jethro). It’s important to adjust supplements periodically.

      I did notify my family doctor and my neurologist of my supplements – but I am not taking a dangerous amount of anything. Also, I am not taking any herbs that might interact with my medications. In the past 2 years I have only had 2 IVIG treatments. I took a detailed list of all my supplements to the infusion center and they did not see any problems.

      I did not get side effects from many of my pills. I do remember cranberry extract being tough on my tummy. If Kevie needs a huge amount of anything do be sure to increase the dosage gradually. It’s also very important that I take my pills with a meal – the few times I have tossed them down without a food buffer I was very queasy.

      I assume you have confidence in the natropath. If he offers to set Kevie up with a simpler, more compact, pill program do purchase his product. It does not actually hurt to take all my pills but it is a hassle – further more, many of them are large. A compounding natural pharmacist can make a supplement regime easier by dividing supplements up through the day and eliminating the need for “filler”.

      I hope this is helpful. Our own dear Doctor David considered supplements a waste of money – but I honestly feel my pills keep me operating as well as possible given the immune war going on in my body.

      Flossie

    • Anonymous
      February 10, 2010 at 8:54 pm

      The B-1’s and B-12’s? Being cautious about the B-6’s tho, as that can build up to toxic and thus negative levels and results.
      I agree that the good Fish Oils with the rite Omegas AND calcium citrate plus magnesium and Vite D are also good to offset and support a lot of problems.
      My only caution here is to watch your labels! Count up the extra B-6 they put into everything. I’d found at one time I was getting over 6 times the recommended Daily Requirement…bordering on the toxic by looking at those labels. No wonder the numbness wasn’t improving!
      Hope this helps, let us all know what your’re doing and if it works.
      Don’t expect tho, that a week on supplements will make you feel better? It takes months! Give it at least 3 months to kick in and then decide.

    • Anonymous
      February 10, 2010 at 9:15 pm

      [FONT=”Century Gothic”]for omega 3’s i like this stuff: [url]http://www.v-pure.com/[/url]
      it’s made from algae that the fish eat– that’s how fish end up with omega 3 and is also why farm fed fish have none. i like it better than fish oil because it doesn’t cause heartburn and there is less risk of contaminants such as mercury, etc. also, it is, i guess you can say, at the top of the food chain… it’s made and must be ordered from switzerland. i’ve been using it for a few months now– who knows, maybe it’s this that got rid of my cidp rather than the stem cell transplant 😉 [/FONT]

    • Anonymous
      February 13, 2010 at 8:34 pm

      I knew we had loads of folks with good alternative therapies.

      I always learn some when we share

    • Anonymous
      May 19, 2010 at 9:06 pm

      This thread led me to do a search on ALA.

      Lipoic Acid to Treat Chronic Inflammatory Demyelinating Polyneuropathy
      This study is currently recruiting participants.
      Verified by Oregon Health and Science University, August 2009
      First Received: August 19, 2009 Last Updated: March 4, 2010

      the link goes here: http://clinicaltrials.gov/ct2/show/NCT00962429

      The header claims “currently recruiting.”

      Is there a place on the forum that lists active clinical trials?

    • Anonymous
      May 22, 2010 at 4:50 pm

      I typed in NIH for National Institutes of Health and googled. Then I followed the web site to clinical trials and typed in CIDP and saw two that were currently accepting.

      Check them out !!

      Good luck !!

      Dick S

    • Anonymous
      May 24, 2010 at 9:19 am

      I remember so many years ago somebody told me ‘they’ use msm, well, really it is DMSO for muscle problems in expensive race horses. There are some doctors online and in print who will tell you how to use it.

      I’ve taken all the pharmecutical stuff mentioned on this forum, yet I believe it is the supplements that helped me the most. When my nerve pain, tingling and numbness were at their worst I took msm in powdered form becuse it’s easier to dissolve a lot of it and drink it up.

      As homeagain said, give the msm several months. Don’t give up too soon.

      Overall, I prefer a form of fish oil that also contains COQ10 and L-carnitine. I use 4 grams/day. Recently (2006-2009) some neurologists have recommended ‘a good’ B-complex and magnesium. I no longer take msm.

      My wife is from China. She researched CIDP on the Chinese Alternative and West style web sites. She found a web site that she trusted that gave directions for a juice drink made from apple, raw potato, carrot, celery and honey. Use about a fist size of each, honey added to suit your taste. I took this every day for almost one year back in 2005. Did the juice help? I think so, but I couldn’t prove it. I got stronger and my numbness and tingling decreased, but sometimes I go in remission and recover a little function no matter what. I no longer use this drink either. Well, they started my IVIG.

      For DickS,

      thank you for the Clinical Trial info. The trial in Oregon is still recruiting. but, the IVIG infusion must be stable for 3 months. I don’t meet the criteria for the stem cell trial. I asked them if they are still recruiting, no answer yet.

    • Anonymous
      May 26, 2010 at 9:13 pm

      its important to note that I dont have cidp, I have some occilating action waxing and waning. accending axonal involement (AMAN dx) and central motor siezures (dx) from primary sjogrens syndrome (dx) but many had similar presentation that I had so I chime in for them. I found out that before any of the many many things that had to go wrong in my body, that none of them would have occured if I had a little thing called elecrolyte homeostasis. sometimes I had secondary hyperparathyroidism. even the H pylori infection would not thrive in this state. it all boils down to four minerals, calcium, magnesium, sodium and potassium. equal amounts of sodium and potassium and 1:3 mag:cal. vitamin D for absorbtion and K also. if you are a waxer and waner then the trick is to recognise the signs of each of these deficiencies and take the suplement as needed because it changes and occilates. eventually your body will do this on its own but it takes time. at any rate it worked for me. it is also refered to as your pH balence. acid vs alkaline.

    • Anonymous
      May 26, 2010 at 9:13 pm

      its important to note that I dont have cidp, I have some occilating action waxing and waning. accending axonal involement (AMAN dx) and central motor siezures (dx) from primary sjogrens syndrome (dx) but many had similar presentation that I had so I chime in for them. I found out that before any of the many many things that had to go wrong in my body, that none of them would have occured if I had a little thing called elecrolyte homeostasis. sometimes I had secondary hyperparathyroidism. even the H pylori infection would not thrive in this state. it all boils down to four minerals, calcium, magnesium, sodium and potassium. equal amounts of sodium and potassium and 1:3 mag:cal. vitamin D for absorbtion and K also. if you are a waxer and waner then the trick is to recognise the signs of each of these deficiencies and take the suplement as needed because it changes and occilates. eventually your body will do this on its own but it takes time. at any rate it worked for me. it is also refered to as your pH balence. acid vs alkaline.

    • Anonymous
      May 27, 2010 at 6:15 pm

      [QUOTE=CIDPGuy]Rocky
      I’d like to hear more about your experience and thoughts with Alpha Lipoic Acid and i have read about that it’s great at firing up the dead neurons especially with neuropathy however i just wonder if for those of us where IVIG doesn’t help and so our myelin never have a chance to repar could still benefit from it or not?[/QUOTE]

      [I]I don’t know what to tell you. I only know that it is in wide use in Europe for neuropathies and is being given robust testing in CIDP patients here at the Oregon Health Sciences Center. For me, yes, I think it has made a difference.

      Last year when I heard about the Oregon testing, I got in touch with them. The woman in charge said we should have some good data by this Fall.

      Rocky[/I]