Supplements? Nutritional Healing?
AnonymousJune 19, 2007 at 12:04 am
How does one determine which, if any, vitamins, minerals, supplements, etc. to use? I suspect traditional drs. are not much help.
I’m investigating negative ion therapy/clothing, vitiamin D, lecithin, & C0Q10. Does anyone have experience with any of these being helpful? I myself (non-GBSer) take lecithin daily for brain function & nerve health.
This may be naive, but, does chiropractic help with anything once recovery is underway?
Thanks in advance to all who respond.
June 19, 2007 at 12:39 am
when I first got really sick, I started taking Colostrum, Aribinogalactan, b complex vitamins, drank lots of water.
Now I take…switch off with multi V and just a b complex and a vitamin a….Multi Vitamins, b complex, CoQ10, vitamin a, alpha lipoic acid, CellFood, I drink very little clear soda (no caffeine or coffee, nerves cant handle it anymore) but I do drink lots of water. I stopped taking the CellFood a few days before my recent surgery. When I started taking it, my residuals were at a very low almost not even there. I was impressed plus I had a lot of good energy, felt good, was in a good frame of mind, and wasnt leaping out of my skin. My residuals are acting up in a bad way, all the recent stress is a huge contributor but I wonder if it would be better had I not stopped taking the CellFood? Is it one of those psychosomatic things? I dunno, but I’ll let ya know how I feel in a couple of days since i started the CF again.
I have tried a chiropractor and I did feel more centered afterwards. I wish I could afford to go more often. I prefer trying natural approaches first but am not opposed to dr’s scripts either. I have just had bad reactions with scripts so I lean towards the natural approach. Not sure if anything is a magic bullet, but I say if it helps ya feel better, why not?
Once i get settled in our new home I plan on getting back to eating more whole grains and fruits and veggies, lean meat, and walking again. Eating poorly also makes things worse, never really noticed the effects until I got GBS.
AnonymousJune 19, 2007 at 9:21 pm
How does one determine which, if any, vitamins, minerals, supplements, etc. to use?
I take a lot of supplements and what I’ve found is that you just have to research everything according to your symptoms. And be sure to validate what you find with multiple sources. Also, if you do start taking any supplement make sure your doctor is aware too.
If you are looking for some kind of test to determine deficiencies, there are nutritional profile type tests you can take — which I did. The one I took was very comprehensive (and expensive). However, I also found that the doctor that ordered the test for me wasn’t that familiar with the test so therefore couldn’t offer much more interpretation than what the lab offered. I had expected more discussion from the doctor. So if you go for these type tests make sure the doctor is VERY familiar with interpreting the results.
Here’s a link to the lab that I used:
There’s also another lab that does this sort of testing:
RE: Vitamin D
There is a vitamin D test that your family doctor can order called a “25, hydroxy”. This can determine where your vitamin D level is at and [U]if you need to supplement[/U]. A good level to be at is over “50” if you don’t have any autoimmune issues. Since I do, I’ve been told that I should strive to get my level up to around 70 -80. I’ve had this test done several times and I’ve slowly worked my level up to 49. In the winter I was taking 5000iu of D3. Now that it’s summer I won’t be taking that much if I’ve had any sun that day.
Here’s an excellent website to research vitamin D:
I take 200mg of CoQ10 daily — along with L-carnitine (fumerate) and magnesium. And if I remember, I take some D-Ribose. These are targeted towards the heart, but also have other benefits. I follow Dr Stephen Sinatra’s recommendations for these supplements and I also see a holistic cardiologist.
I see a chiropractor when my back gets a kink in it. I know some folks see chiropractors that practice “kinseology” (sp), but my chiropractor doesn’t do that stuff. It’s an interesting idea to consider though if you think about how having good alignment helps the nerves etc. dunno…though. I think I would research that really well before I’d try it for a GBSer. I think massage would be good though.
My brother is the one that had GBS over this past winter…so that’s why I check in here now and then.
Hope this helps…
AnonymousJune 20, 2007 at 12:44 am
I have studied wholistic health for 37 years, am a Reiki master, and do reflexology, kinesiology, and iridology. This kept me out of the hospital when I had GBS. I took MSM when my breathing got difficult, adrenal extract,16 grams of vitamin C, 400 mg of B complex. I watched to see where the pain was in my hands as the GBS got worse and it corresponded diretly to what was happening. I knew if I went to the hospital that they would not allow the supplements and I would get more paralyzed.
I take 100 mg of Coq10 twice a day. I do not take lecithin because I have read that it is usually rancid. Perhaps they have improved on this.
I won’t go into the rest of the stuff I take, but I have avoided the pain that most people with GBS experience so I am doing something right. If you read my old posts, it will tell you more. If you are really interested in learning more, I shall be glad to talk to you over the phone. The body gives us signs as to what it needs…..clouds on fingernails is a zinc deficiency, whistle marks are a B deficiency, sunny days hurt your eyes is a B deficiency, feet stink, take zinc, etc
Elderberry is good for fighting bacteria as well as viruses. Some herbs worked as well as antibiotics in recent studies. Doctors know so very little because they are not taught it. A doctor friend told me he had four hours of it…I am sure that now they are teaching it a little more. I just can’t figure out why they don’t study it as I did. They don’t even know to find out a patient’s blood type – that makes all the difference. Different bloodtypes come down with different disease and their diets should be different. I am an O and this means a meat eater. A’s are healthier being a vegetarian. What doctor ever asked you this? This is what I first ask people that I work with.
Let me know if I can help.
AnonymousJune 21, 2007 at 12:11 pm
Thank you soooooo much! I would very much like to learn more from you. I am visiting my daugher this weekend, and will be talking with her about alternative approaches to healing. She doesn’t like to ingest any meds/substances ever, but it’s probably safe to assume that GBS will have changed her thinking on a lot of things.
I am familiar with Eat Right for Your Type, regarding blood type and foods. But I am not aware of blood type and disease, etc. I find it all fascinating and think much of it has merit.
I’ll get back on line when I learn my daughter’s receptivity to all this. Maybe I’ll even do it just for me since I have chronic medical issues of my own to deal with.
AnonymousJune 21, 2007 at 10:10 pm
Jann – thanks for inquiring….I thought my symptoms were returning but I think it was being on my feet too long – an hour or so. I have been practicing the LAw of Attraction which means you visualize what you want – NOT what you have right now. So I am using this to not focus on this horrible GBS and picture how I want my body to feel. There are great books by Esther and Jerry Hicks that teach how to do this. It makes sense to me. It is a more detailed instruction of what is found in The Secret
Jane – If you want to learn more about which diseases hit which blood types you need to read the author’s second book – LIVE RIGHT For Your Bloodtype – When I had GBS the first time – twenty years ago – I had a wholistic doctor. He said that if got worse he was going to put me in the hospital as a last resort and give me IV’s of vitamin C and of adrenal extract. I had alrady started taking adrenal extract – LOTS OF IT- and it heped me immensely. So this time when my GBS was coming – I took lots of both. I shall be glad to help you or your daughter. I feel blessed that this knowledge has saved my life so many times that I am glad to help others. I ope your visit finds her condition improved.
AnonymousJune 22, 2007 at 12:18 pm
I’m glad to hear that you are doing well. And the (positive) visualization is bound to help.
BTW: Do you have any suggestions for chronic bronchitis — ?? — ie; herbs, teas, supplements. My brother is really struggling with it. Someone on another forum suggested “catnip tea”. And I’ve read something on NAC — n-acetyl-cysteine) is a precursor of glutathione. I just don’t have any experience with it.
AnonymousJune 22, 2007 at 10:45 pm
If I had it, I would take Vitamin C capsules – how much? It depends on what the body needs. He could start with four grams a day and then up it until he starts seeing a difference. I take 8 grams when I am healthy. Lnus Pualing, the only person to win two Nobel prizes, says that an average man needs 8 grams a day. This is when healthy. He may need more since he is sick. I took 16 to slow the GBS. If he has difficulty breathing, I reccomend MSM. I tried it when I had pneumonia and it cleared up my breathing in 10 minutes. I was totally surprised as I was doubled over trying to breathe. I took 1000 mg……poof. A teacher friend with asthma took it and didnt need her inhaler anymore. It worked quickly for her too. Books suggest to take 1000 mg twice a day. When I had difficulty breathing with GBS, I took it and it allowed me to breathe. I did everything in my power to stay away from the hospital!!
I do not know anything about the tea you mentioned. I like Echinacea, godlen seal, elderberry, oregano,…I especially like the ones that are anitvirals. But you did not mention the cause of his chronic bronchitis. Coulld it be an allergy? WHat is his bloodtype? Sometimes we are eating the wrong foods or not eating the right ones. I think the C and the MSM should make a big difference. If the C isn’t working, he is not taking enough. I learned that through getting rid of my allergies to ragweed. But remember, I am not a doctor….sad that we have to say that….they make it sound like we have no right to heal ourselves yet the Second Leading cause of death in the US is doctors/hospitals mistakes and infections.
AnonymousJune 22, 2007 at 11:37 pm
Have any of you tried Life Extension? I joined them about 3 wks ago, got a product listing and huge book “”Disease Prevention Treatment”. I have GBS and MG. There are several pages re MG, nothing on GBS. Can call anytime to speak with one of their doctors. Will check out what has been said by this thread.
AnonymousJune 23, 2007 at 10:51 am
Yes, I joined Life Extension Foundation (LEF) — mostly so that I could get that book on disease prevention…I had heard that it was a really good reference and it is.
I like the lef.org website for when I’m researching too — however, I like to validate information I get from more than one source, so anything I read at LEF, I try to find it somewhere else too… like at pubmed.com. LEF is really good about citing and supplying their references so that makes it easier.
BTW: By “MG” — do you “myathenis gravis”?
AnonymousJune 23, 2007 at 11:03 am
Thanks for the info — I will pass on to my brother. He’s already taking vitamin C — but I’m not sure how much.
They (pulmonary doctor) are not sure what is causing the bronchitis — ?? –. He’s had a procedure done called a “bronchoscopy” where they went in and washed / vacuumed his lungs, looked for tumors, took a biopsy… but didn’t find anything. He’s still waiting on definitive results from the biopsy — which can take up to 8+weeks.
He has since developed a sinus infection with ear congestion. They’re trying different antibiotics which haven’t seemed to help. They wanted him to try “bactrim” but it was the antibiotic he was taking when he had the bronchitis back in Dec — and when the GBS presented himself. He’s afraid to take the bactrim thinking that “what if THAT was the trigger..(??)”.
He has an appointment with an ears-nose-throat (ENT) doctor next, and then also an allergist. –??–
He’s trying all the “allopathic” approaches and that route is just not providing any explanations / solutions yet… which is why I’m do all this other research, but it hard not knowing what the exact cause is. I believe the bronchitis is a symptom of something else…but what…????
Thanks so much — I appreciate your input.
AnonymousJune 24, 2007 at 11:54 pm
Yes, Jann, MG is myasthenia gravis. We have timeshares at the Royal Resorts. Cancun,Mex, where we were first introduced to LEF. I am now treading water to learn more re supplements that can help autoimmune diseases. Thanks for the reassurance and back-up pubmed.com
Is your brother better?
AnonymousJune 25, 2007 at 4:19 am
No, my brother isn’t any better yet — he’ll be seeing some specialists (ENT & allergist) this week so maybe he’ll get some answers / ideas. Thanks for asking.
I will keep an eye-out for any info regarding supplements and MG. The only issue I currently am aware of is magnesium — MG patients have to careful with magnesium. Magnesium has muscle relaxing qualities and of course with MG being a muscle issue disease you can understand why you would need to be cautious. I do know that a vitamin D deficiency should be looked into. [B]Have you have your vitamin D level checked?[/B]
Do you have a holistic doctor that you can consult with — ?? — …that can help you with nutritional approaches to your health issues. I have purposely sought out M.D.’s that practice ‘integrative medicine’ so that I can get that holistic perspective that I feel is critical to my health issues.
Let me know if I can help you in any way — I’m always researching stuff, so if you find something and want someone else’s “take”, I’ll be happy to take a look — besides sharing info like this is how we all learn.
AnonymousJune 25, 2007 at 12:21 pm
I had been told by my doctor, back when I first got GBS back in 1995, not to take any immune-system boosters because my immune system was already over-active (hence the GBS).
Has anyone else ever been told this-?
I’ve stayed away from any nutritional supplement immune boosters since then, except for Vitamin B12.
AnonymousJune 25, 2007 at 12:45 pm
I visisted my daughter in the Twin cities this weekend. Found little change in her physical strength, etc. However, I did hear her voice for the first time since May 13! So exciting to hear and to know her vocal cords have not been impacted! Her vent cuff was down for a full 30 minutes. First words were love for the family. Second words were “I want real food.”
My daughter is an exercise physioligist, so knows alot about the body, etc. and was familiar with Reiki, kinesiology, etc. During her talk time, she indicated GREAT interest in Carolyn’s wholistic approach to health care. I’ll be reading the Live Right book, researching, asking more questions, exlporing the Life Extension stuff, and looking to this site for more leads and advice as well.
Thank you all SO much. This forum and website is such find, and the folks on it are truly a blessing to our family.
AnonymousJune 25, 2007 at 12:48 pm
There are differing views on whether to take immune boosting supplements when you have autoimmune issues. Some doctors – like yours – believe that the immune system needs to be suppressed. But other doctors, probably the more holistic doctors, believe that the immune system is overworked and mis-directed so it needs “support”.
What I like to follow is what Dr Andrew Weil says on his website:
[I]To be prudent, people with diseases like rheumatoid arthritis or lupus should avoid long-term use of any of the immune-enhancing botanicals. But it is perfectly fine for them to take echinacea or astragalus short-term (up to 10 days or so) to treat colds and other minor infections.[/I]
Also, it’s important to note that there are supplements that are immune “boosters” and there are immune “supporters / balancers”. For example, “echinacea” is considered an immune booster whereas, “astragulus” might be considered more of an immune “balancer”. Anyway… that’s how my holistic cardiologist explained it to me.
Hope this helps… just remember to check with your doctor and / or advise them if you do take supplements.
AnonymousJune 25, 2007 at 3:00 pm
Just wanted to post to encourage you all to keep this conversation going! I started a couple of months ago taking a multi-vitamin/supplement and have recently added Ester C (500 mg). So far a little improvement. I had lots of Reiki treatments when I was first diagnosed and it helped a lot!!!
Anyway, keep on talking 🙂
AnonymousJune 27, 2007 at 1:48 pm
Discussions like this ARE interesting — I agree!
I thought I’d share some thoughts and a link about low stomach acid being associated with autoimmune disease.
I developed vitiligo — my first autoimmune issue — about 20yrs or so ago. I saw a doctor at that time and he suggested to me that my vit was a result of issues with my digestion — specifically low stomach acid. He suggested several supplements one of which was HCl (betaine hydrochloride).
Well, at the time I just couldn’t connect how my stomach could be causing a skin disease so I never took his advice. Then a couple of years later I came across an article in an Alternative Medicine Magazine which I saved and just recently discovered.
Folks on the vitiligo forum that I participate in also believe that there is something to this low stomach acid thing. Here’s a couple of other links:
This next link is a newsletter published by a doctor that I’m not familiar with but I think he explains the low stomach acid and autoimmunity theory as I’ve read elsewhere pretty well:
Looking back 20yrs I have to wonder if I had taken more seriously what that doctor had told me — well, would I have Hashi’s and Sjogren’s now… Hmmmnn… “water-under-the-bridge” as they say.
ANYWAY — just another idea / theory I thought I’d share. Note: This theory is probably still considered “alternative”. I’m not sure any allopathic doctor would even know about this theory or what a “leaky gut” is.
As always… if you decide to try any new supplement, check with your doctor…. I treat my supplements like medicine and my doctor is aware of everything that I take.
AnonymousJune 28, 2007 at 1:02 am
I am glad the Reiki helped….it is amazing how it works. I once used it on a vcr tape that was stuck in my vcr at school. I did it while the students weren’t watching – and in a few seconds it popped out. Surprised me! How much Ester C are you taking? A goat the size of an average male makes something like 7 grams a day and they don’t have the stress ilke we do. So if it is not working, you probably aren’t taking enough. When I find my feet and legs getting worse, I pop some more C and it takes it away. Just a thought.
WIth Vitiligo B complex vitamins are good and extra PABA and pantothenic acid….are you taking enough? My guess would be 50mg three times a day and sublingual pantothenic acid about 300mg total per day……this is what my books tell me…..how is your thyroid gland? If you want an easy test….paint a square on your arm with iodine maybe 2 centimeters on each side and see what happens in a day……if it disappears, your body needs iodine and will pull it in…..then you can take kelp or eat food with iodine in it….there are lots of other things to take for vitiligo…..essential fatty acids are good……let me know
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