Anyone else notice a weakened immune system???
AnonymousOctober 20, 2009 at 10:19 pm
GBS with MFv – 3 TIMES AND SICK A LOT???
Hi, I have had GBS with the Miller Fischer Variant 3 times (age 11, 30, and 37) and I am now 40 years old.
I get sick A LOT…3-4 times per year – at least. I had heard or read before that GBS can lead to a weakend immune system and I am trying to find the article.
My doctor recommended a test to look at ALL VITAMINS AND MINERALS in my body to try to create a compounded vitamin specific for my body to see if it helps decrease the amount of colds I get. AND OF COURSE THE INSURANCE COMPANY DOES NOT COVER THIS $5,000 TEST…unless, I can show them some research article that suggest this could happen.
I eat right, take multi-vitamins, work out, and stay in shape yet I am always getting sick and I don’t even have kids! Imagine if I had kids? I would end up being the girl in the bubble.
I did e-mail the foundation to see if they knew of any research reports that pointed to this…but, I see on this site that I am not alone with these problems?
I am very frustrated….
Thanks for any help/info anyone can provide.
October 21, 2009 at 5:01 pm
I have heard a lot about this and do everything I can to avoid getting sick! It scares the you-know-what out of me to think I could get GBS again if I get sick.
Now, you say you get colds…are you sure it isn’t allergies? The reason I am asking is because allergies are the strangest things, and they are also an auto immune response. The way our bodies respond to such things could mimic “being sick”. I have been treated for allergies and thought all along it was a cold or sinus infection. I havent gone thru the allergy testing, but all signs point to yes. It is just a thought that maybe you can bring up with your dr. Not saying you are not indeed ill several times a year, please dont take any of this wrong. I am just trying to help ya weed out possibilities.
I am sure others here can give you more info. It will be interesting to see what is posted. Hope you find some relief and answers.
AnonymousOctober 21, 2009 at 8:56 pm
Yes, I have allergies too and this is not allergies it is definitely sickness and I have to go to the doctor for antibiotics. I have never had GBS after just having a cold. It has always come back after I have had the flu. Not every time I have the flu…but when I did get GBS back it was after having the flu.
I am surprised that 37 people viewed my post and only 1 responded?
I am hoping to have a child…getting engaged soon (surprise :-)) and hopefully we can have a baby….still need to get checked for a doctor for that.
It just seems that I pick up a cold soooo easily and I am so cautious all the time…get my sleep, eat well, excercise, take multi-vitamins sold to me by my M.D. (who is also a licensed homeopathic docotr) and try to keep my response to stress down to a low roar :-), wash my handes often, try to not touch my face, nose, eyes etc….very cautious but still get colds easy!
I am so frustrated…thanks for your response….maybe in a few years I will be singing your tune! Less allergies and colds!
October 21, 2009 at 10:41 pm
My son has cidp, so I cannot respond to your GBS question. However, since he got this 3 years ago Oct. 3rd, we seem to always get sick the second week of Oct., about every 2-3 weeks until about March. It is frustrating. I had him tested for pidd, on very rare occassions your immune system can be overactive (cidp) and deficient (pidd) He was NOT immune deficient. Oddly, with ivig regularly he should not be getting sick so often, I am perplexed. One thought is that maybe he relapses in the months of Oct,Nov, Dec, Jan, March? Maybe he does not even need ivig the other months? Some people have mentioned that theyh too got sick in the Fall/winter season. Good luck!
Dawn Kevies mom
October 21, 2009 at 10:51 pm
I have CIDP. I started the Linus Pauling reccomendation to take more vit. C and Lysine. You can check out Dr. Pauling on the net. I have a Vit D sunshine tan from the summer plus what’s in my multiple. I also have lots of vitD calcium and magnesium in my multiple. D Calcium and magnesium work together to help prevent osteoporosis and probably help the immune system along. I take prednisone and the insert that came with the medicine suggested the three nutrients.
I also have allergies mild to moderate which don’t bother me much. But since I’ve upped my Vit C intake it may be helping more than I know. I have never had a flu vaccine and was set to get a shingles vaccine until I was diagnosed with CIDP. Now the H1N1 is here.
I take l000mg of Vit C three times a day now. And 1000 mg of lysine.
Whether you take a lot like me or a little always eat something when you take any sort of supplement.
I have diabetes so I watch my diet carefully. We all have different needs and we need to research and experiment with what works for us.
At clinicaltrials.gov they have a trial where they are giving 1200 mg of alpha lipoic acid. I think a small amount of that nutrient is in most multi formulas.
The trial is for CIDP. They have been using alpha lipoic acid for years in Europe for patients with diabetic neuropathy.
I also take acetyl L Carnitine (not L Carnitine) for nerve pain and have not needed any pain meds since last Dec. By the way L Carnitine is a good nutrient too and is probably in most multi formulas also.
A friend told me to leave unpeeled onions and make sure they are unpeeled onions around the house in unnoticed and inconspicous places of course, because the unpeeled onions are supposed to attract flu viruses. It may be an old wives tale, but I have a few onions here and there and I hope none of get the flu.
October 22, 2009 at 1:23 am
I have found this brand of juice at Walmart of all places. Its called Genesis I believe. They offer Acai berry, goji, and resveratrol. They each have benefits but also each has a large amount of b vitamins and such. Too much B and it can cause nerve problems so I only have one glass of one or the other a day. Also noticed I feel better adding Soy milk to my diet. It is odd to get a cold so often. I rarely get sick anymore other than the general feeling of “not feeling good” that comes with GBS of course. Not sure if it is a combo of what I take, do and precautions. Or what?? There are so many posts here about people getting sick much more often, much easier, etc. Do a search and see if you can find some answers that might help. It sounds like you are doing everything right. I wouldn’t take an antibiotic for a cold unless it turned into a sinus, throat, chest, or ear infection. I assume your dr has good reason for Rx them. I know I have read that GBSers should ask for a round of antibiotics when we get sick regardless of what it is…just in case. Again, not being a dr myself I don’t know how true this is or if it is even helpful or a good idea. I truly do hope you find relief, it is hard enough dealing with what we deal with without adding more illness on top of it.
AnonymousOctober 22, 2009 at 2:08 am
I also have CIDP. I was diagnosed June of this year. I am on IVIG and I have been told by my IVIG nurse that it is very important to stay away from sick people/germs as much as I can. She said being ill can increase the symptoms of CIDP. On another note, my neurologist told me to take Alpha Lipoic Acid and Borage Oil. I also have read the clinicaltrials.gov and was very surprised but pleased to see the Alpha Lipoic Acid Trial in prgress. I really want to believe these natural vitimins will work, I would sure like to use less IVIG and chemicals. :rolleyes:
October 22, 2009 at 3:42 am
I forgot to mention oils. I take Udo’s Choice Oil Blend which is Omega3, Omega6 and Omega 9 in the right proportions. These are called the essential fatty acids. We need omega 3 because our bodies do not produce it and we don’t usually get enough in our diet by eating salmon, tuna or other fish that is high in Omega 3. We are more inclined to get too much omega 6 from our diet and I understand too much omega 6 can cause inflammation. I used to take codliver oil and then flaxseed and even though I was taking Udo’s Choice for quite some time I still got the CIDP. I still take the Udo’s oil, because I don’t know what caused the CIDP and the oil may have helped.
I am going to check out borage oil. Also if you would like to visit
urdoerasmus.com that is a site that explains a lot about the fatty acids.
All oils according to Udo Erasmus blend with all other oils. So I could take olive oil, borage oil, and the oil blend.
Also that site tells the story of Udo Erasmus and how he cured himself from pesticide poisoning when doctor’s could not.
AnonymousNovember 8, 2009 at 9:46 am
For what it’s worth, I’ve been using a mushroom extract and find
that my immune ability is apparently improved. That is, of course
my own anecdotal experience. I started this a while after having
an Epstein-Barr infection four years ago which caused severe GBS.
There is some research support for using these products, though
it is rather tenuous. I don’t want to quote anything because, though
I did a lot of looking around, I don’t remember much. However, the
basic claim has something to do with similarity between various
components of certain types of mushrooms used medicinally and
some immune antibodies.
In my experience, I have not had colds since I started taking
these products whereas before I always had severe colds a
couple of times each year. I have had a stomach virus about
a year ago but not much else in the way of virus infections.
The products can be obtained from Fungi Perfecti in Olympia, WA.
The direct page link is:
The ones I used are called “CordyChi” and “G5”. I used them at a
rate of 12 drops each in fruit juice each morning and lately
reduced that to about 8 to ten drops each. They are tasteless.
When my current supply is gone I am switching to a more
comprehensive formulation called “MyCommunity”. These products
are expensive but each bottle can last several months. The
company is honest and I have never had any trouble with payment
Once again, my experience with these is just my own but I’m
satisfied enough that I expect to continue.
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