Glyco-Nutrients – Im taking them – and feeling great

Jason

I’m glad that you are feeling better…but you could be in remission and the
IVIG is helping you maintain a decent level of life…

HOWEVER – Mannatech has been proven to be a scam…a multi-level company
such as a pyramid. The facts that glyconutrients cure everything is bogus.
They have had doctors that have lost their jobs in promoting the products
in their practice. Please, please don’t waste your/others money in thinking
that this works…it doesn’t. Look at all the websites that disclaim Mannatech
even ones that were working for the company.

Think about it…if there was a cure, don’t you think that every neurologist
would be using it? Don’t you think that this Foundation would be promoting
it? There is no cure, Jason.

I admire your tenacity to find alternative measures to help find a solution to
this dreaded disease, but do research everything. Mannatech has been
founded to scam even the best…save your money.

Most posters here have tried numerous alternative medicines, only to find no
change after a while. Perhaps you have gone from a progressive stage, into
a relapsing one…the IVIG maintains that quite well.

The water cure is a form of saline – for dehydration – no harm…but the glyco-
nutrients are expensive and the only ones that are benefiting are the ones
that push it.

I researched Mannatech last year…it sounds great, but that’s what MLM’s do,
they fluff, to reach others that are gullible. Save yourself the waste of
money…better yet, read everything about it…it’s not a cure all.

Miami Girl

Jason

Just out of curiosity…you posted after noon, then edited out the name of the
company, Mannatech, then cut out your paragraph to contact you for more
information on it and you would call anyone back, all by 8:30 p.m. Why????

If you post information to recommend to others, please don’t delete it, every-
one needs to research for themselves…as I said earlier, the company you
recommended, Mannatech, is a multi-level-marketing (MLM) company that has
been sued for claiming that their products cure everything, including cancer.
Researchers have proven that studies they have done, never took place at
Universities that they said were used to “prove” the phenominal product.

I assume, that maybe, you never checked out the product thoroughly?
People that have worked for them, have complained, how pushy the managers
are and that they have been threatened to “sell”. If a person has any type
of ailment, the product “cures” it. Being a MLM, they need to rope people in
to become part of the company, inorder to make money…which they don’t
ever become wealthy…the top management never changes, they are the only
ones that make the money…sorry Jason, but you have been “duped”.

Miami Girl

Sorry to be a pain, but when you “edited” out the information…in re-reading
your post – it sounds like your doctors prescribed the glyconutrients…I am
100% sure “they did not”. That was the part you deleted, saying your
brother and you “talked” to the scientist that created this miraculous product.

I don’t want anyone to feel that your neuro told you to take so many tea-
spoons full, then cut you back to a lesser amount. No neuro would be upset
with you stopping his prescribed meds, but yet tell you to try that scam…

Jason, I just hope you weren’t duped into selling that product…

BTW, I stopped cellcept and prednisone and only use the IVIG, myself, and I
feel 100% better from getting off the pills.

Good Luck

Miami Girl

I’m going to step in here because….well…I have trouble keeping my mouth shut.

YES, you absolutely could have went from needing IVIG every 14 days to needing it every 21 or 28 days without taking any other meds, vitamins, or glyco-whatever they are called.

Here’s our story.

My daughter was 4 when dx’d with CIDP. She needed IVIG 2-3 times a WEEK. Yes…that’s a WEEK. More than anyone else we’ve ever talked to. She is now 6 and except for a few months last year when we tried out Prednisone, she hasn’t had anything other than IVIG.

1 year ago she she was getting 9-10 IVIG treatments a MONTH. Now she only needs IVIG once every 2 weeks & could probably go longer.

The reason? The IVIG stops the bad antibodies from attacking your myelin. The theory is that the more IVIG you get, the less antibodies you have and the more your myelin can grow back. It’s all about controlling the attack through immuno-modulators such as IVIG.

I’m not trying to discredit you here because honestly I’m not you & I don’t know if your glyco-whatevers make you feel better. But I’m telling you what has worked for other CIDP’ers and it’s worked WELL for my daughter.

I say, if you want to, keep taking the glyco-whatevers and be the guinea pig. But just be aware that they might not be all that you hope they are. I’d say the same thing to someone who was taking IVIG & it just wasn’t working for them. There is no end all, be all, treatment or cure. With CIDP you get what you get & if you’re lucky you find a treatment that makes you better. Through my experience, you won’t find a miracle pill or regiment. The miracle comes in the form of TIME.

Good luck & I hope I didn’t step on any toes by butting in.
Kelly

Jason

Again, I applaude you for your enthusiasm in trying to find a cure for CIDP.
As Emily’s mom has said, there isn’t a pill or regimen that has cured this
disease.

Everyone is different in what works for them, because of the varying types
of damage that they have. Myelein or axonal damage can occur in various
stages with each sufferer.

In my case, axonal damage, I don’t have any pains or tingling, no other
symptoms other than getting a tad weaker towards my next IVIG. My neuro
wrote my prescription for every two weeks 50 grams, I do it every four weeks
but could also go without it another week. The reason I don’t was because
as Emily’s mom said, it balances out your antibodies – that’s what an immodu-
lator does. I have been on IVIG for 11 years, with various times in between
the treatment, depending on any attacks. My attacks have been controlled
by having enough consistency with the IVIG. Does IVIG work for every one?
No…some have PP that works or steroids…it just depends on their situation.

On this board is another lady, CodyStanley, who eventually stopped the need
for taking IVIG, she takes nothing because her attacks have stopped totally.
She has residuals, from the disease, that don’t seem to go away.

Probably, the IVIG is stabilizing you at this time, but it’s not the glyconutrient
product…try not taking it and see how you are…you’ll probably feel the
same. If you start getting the sensations back, you might need smaller doses
of IVIG more frequently.

No one here is trying to bash you, but in the state of Florida, MLM’s are under
strict watch because of their bogus claims. I jumped on your post because I
don’t want anyone to get the idea that this works…there was and still is a
major investigation of this company for telling people that this cures all differ-
ent diseases. They have been prohibited from making these claims. The cost
of the product is huge, in hopes that people will think it works. Lipitor is also
expensive, but there are other ways to stop bad cholesteral.

Do keep posting Jason, but do leave all the information in your post…no one
is trying to bash you, but realize there is nothing that has been found, as to
date, to cure or correct the damage that CIDP has done…nothing. All you
can do is eat right, take vitamins and minerals, and exercise…plus taking the
medicine or IVIG that your neuro tells you.

Good luck…sorry if you felt bashed, but that was not the intention…it was to
prevent anyone from falling into that trap.

Miami Girl:)

Jason,
My best guess is that the IVIG is really starting to work for you; to that I say I am so happy for you. It is not unusual to be able to stretch out the time in between treatments as time goes by. I had/have a very severe case of CIDP & 8 months of twice weekly IVIG, PP treatments, & steroid infusions did nothing for me, so just be happy that the IVIG works for you. As for the supplements, as long as yu are not paying for them & they are not hurting you, take them.

There was another young man a few years ago from New York who also came on here a feww years ago & was trying them & swearing by them. But then he came back & admitted that they did not really work in the end. I can’t remember his name, but he was 18. I wonder what ever happened to him? Anyways, I am glad that you are doing so well with this illness, best of luck!
Pam

Jason,

I don’t think you are upsetting the forum – my thoughts are that there is no scientific evidence for Mannatech’s glyconutrients. Mannatech has capitalized on a tiny grain of truth and claimed it as their cure-all discovery. Debate can be healthy – and I’d be willing to take a look at their claims – provided they have published their hypothesis to the scientific community for scrutiny. I have not found any. This is the only reliable way for new theories to be put to the test.

I know how hard you want to believe – we have been in that same place too. For the sake of new comers reading this post, I wonder how “eight essential sugars” can overcome severe axonal damage in a few short weeks? What evidence does Mannatech provide?

Some on the forum might say that I am one to speculate on the wonders of alternative supplements – after all, in some of my posts I made the ridiculous sounding claim of fermented wheat germ’s ability to curb relapses – the first time I made such a suggestion to our doctor, I thought she would have me committed! The difference is that (according to PubMed, Google Scholar, etc) articles have been published for the scientific/medical community – and I printed them up for doctors. The jury is still out – but they have received favorable reviews.

The good news is that you are getting better. I hope you continue to improve and keep us informed of your progress.

Best wishes,
cd

[QUOTE=Pam H]Jason,
My best guess is that the IVIG is really starting to work for you; to that I say I am so happy for you. It is not unusual to be able to stretch out the time in between treatments as time goes by. I had/have a very severe case of CIDP & 8 months of twice weekly IVIG, PP treatments, & steroid infusions did nothing for me, so just be happy that the IVIG works for you. As for the supplements, as long as yu are not paying for them & they are not hurting you, take them.

There was another young man a few years ago from New York who also came on here a feww years ago & was trying them & swearing by them. But then he came back & admitted that they did not really work in the end. I can’t remember his name, but he was 18. I wonder what ever happened to him? Anyways, I am glad that you are doing so well with this illness, best of luck!
Pam[/QUOTE]

[B]Pam, I think his name was Adam and it happened exactly as you told Jason
he thought the product worked then he came back and said how bad he was doing after a short period of time and that Gylcos don’t work.[/B]

Jason –

I’m glad that you ARE feeling better. I wonder if the sugars in the glyco-whatevers have anything to do with the increase in energy though. I’ve researched immune inhancers quite a bit & learned that people with auto-immune diseases should stay away from them since the immune system is already in over drive. That’s one of the things that concerns me most about your glyco. You don’t exactly what it’s doing to those bad anti-bodies.

I don’t think that you’ve upset the board. I think that we’ve all learned the hard lesson that there isn’t an easy fix to this disease. We don’t want to see any newcomer get their hopes up to only have them come crashing down when a “fad” cure doesn’t work.

It’s hard to accept that you have a chronic illness – let alone one that doesn’t have a cure. Try to remember that scientific advances are being made every single day & I believe we are only a few years away from a cure, or at the very least a better treatment, for CIDP.

Good luck & I hope you continue to improve.
Kelly

Jason

Another point…you might have low blood-sugar levels and that the glyco-
nutrients are boosting you energy levels. However, too much sugar can also
cause you to impair your body’s ability to process it – diabetes.

Just be careful…sugar is harmful to the immune system in large doses. It can
also interfere with your digestion, by killing off the good bacteria.

You mentioned that you work 50 + hours per week…you might be overdoing
it and by taking the glyco, it masks your tiredness, achey feeling symptoms.
One thing that we all agree on with this disease is that, rest is foremost the
important thing we need to do, when we feel the symptoms. Your body needs alot of rest, inorder to repair itself.

Good luck…

Miami Girl

Jason I am sorry but I do not believe that the Glyco is what has helped you. Reason is I had my first CIDP episode 7 years ago although they did not diagnose me then so I never had any tyoe of IVIG or PP. I eventually went into remission and was able to walk 14 months later. A year ago Sept. I was diagnosed with Fibromyalgia and some family member said I should try the Glyco. I was skeptical and I could not afford it so they bought it for me. I was on Glyco when my current relapse happened. I had surgery on March 20th 2007 and two weeks later I was in a wheelchair which I am currently still in. Since my last episode I figured was taken care of by physical therapy I decided to just try that. Yes I know there will be alot of people on here that will tell me I should try these ther treatments and I have thought about it and will decide sometime soon after more research on my own. I am new to this forum and had to wait until approved to reply which I finally could today. If this Glyco worked so well minimum I would expect is my relapse to be less severe than the first but it is not. I have no feeling in my left leg and my right is very weak with the tingling burning pain as is my left arm the tinglng burning pain from my fingertips and some weakness. I take Lyrica, xanax for sleep some nights, lorecet as needed, and I have fentynal patches 75mcg every 72 hours. I do hydro therapy 4-6 times a week because my doc ordered a hot tub with hydro jets for my therapy and yes the days I use it I do not have as much pain and it helps with my range of motion so that I do not atrophy. I believe that this Glyco is just a scam to get people to spend their money, I am sorry Jason but that is what I believe because I have used it and it does nothing. Phychologically maybe if you want to believe it works your brain tells you that you feel better but I beleive that these other posters are right that your IVIG is actually helping you stay in a type of remission. You wanted to hear from someone that has used it so that is why I replied.
Thanks
Jody

Jason,

I am a firm believer in doing whatever it takes to get better. If that stuff works for you, thats great. We are all different. However for what it’s worth, if I had $5.00 for every new person who comes on here promoting glyconutrients, I would be on my own island somewhere drinking mai-tais.

That being said, welcome, we are here to support each other however we can. I am glad to hear that you are doing better.

Jerimy

Jodylynn67

Welcome aboard…I’m sorry that you have this disease, but this is a very
caring bunch of people, here on the forum. Please post about yourself and
let us know how you are doing.

I’m glad that you came forth about the glyco products…it really irks me to
see companies prey on an individual’s ailment and making a profit on top. I
am sorry that they did this to you. Jason will now have a true spokesperson
to show that the products don’t work.

BTW – hydro-therapy is great for CIDP…wishing you the best.

Miami Girl

Thanks I am glad I found this forum. I did post a short description of my story on the main forum yesterday because I am just getting used to how this works. I know Jason believes in glyco but after my experience I definitely would never trust it again that is for sure. Also he did want to hear from someone that had used it and it did not work and I feel that I pretty much am the poster”child” for that. LOL I am lucky though because my husband and his family are very supportive and help me with whatever I need including running me to appointments when my husband cannot take off work. I think that the more support that you have from whatever way you can get it helps. I am amazed at the number of people that are going through similar things as I am. As far as my doctor knows I am the only person in my state that has CIDP. I have found you must be a very strong advocate for your own medical care when you have something so rare it is hard for some medical personnel to understand what is going on with your body. When I talked to my doctor about hydro he agreed because it is also great for fibromyalgia so he wrote a prescription for it and my insurance is going to cover par or all(they haven’t made the end decision yet) for it so we had a hot tub put in and I am able to do the hydro as often as I can depending on the day I am having and I definitely notice a difference when I use it at least pain wise. Againthank for the welcome and I am glad I found this forum.
Sincerely
Jody

Jody

I’m the second person in my county that has this, but the first one left to
reside with her daughter in another state.

It is amazing how few know about this disease. I had never heard of it before
I started presenting symptoms – 11 years ago. Hopefully, someday there will
be some sort of solution to this.

Have a good day!

Miami Girl

Miami Girl,
Talk about alot of people not knowing about CIDP, I went to my pc yesterday morning and she was out sick, since it was the first appointment of the day they didn’t get time to call me to reschedule. As it was just a med check appointment I saw another doc in the office. Spent 3/4 of the time explaining to him what CIDP was. Me trying to educate an MD on the finer points of CIDP, lol. At least he was truly interested.
Pattie

Pattie

I know what you mean…how awful to get to the appointment and your
doctor isn’t there. I have an appointment next week with the neuro that
is P.O. with me from not following his meds…it’s before I can switch to
another, my first one, whom I adore. I tried to explain to him that his meds
kept putting me in the ER, three times, but he had an excuse and stood up
to end the appointment.

I have no tolerance for someone that wants/believes to treat me the same
as GBS…I mean exactly the same…cellcept and prednisone…all with side
effects…versus IVIG, with no side effects. How rude…then gets mad when
I get off of them…then he tells me, well you said the IVIG didn’t work. I
said no such thing – I told him it was expensive and did he have any other
solution…he did, $94,000 for the first ER – $56,000 for the second ER and
$46,000 for the third ER…he had to find the right mix, but didn’t change
any scripts at all. BLEH…he’s out…of course my insurance paid, but that’s
not the point.

I just don’t even waste time trying to explain it to another doctor…I’ll go
back to my original one. At least you turned the visit into a positive…

Miami Girl

Jason, if you feel they are working for you, I say go for it.
I know people who have tried other means to help their illnesses such as religion, acupuncture, etc and they too swear that those things are what works for them. If you feel it works, continue on!

Jodylynn – glad to hear you educated another doctor on CIDP. I know quite a few doctors/nurses who have heard of GBS but unless neuropathy is their field, they are not familar enough with GBS let alone CIDP. In fact, my doc said I had a better chance winning the lottery than getting CIDP, LOL! Figures with my luck. But on the plus side, you have enlightened another person on this illness which may benefit another individual in the future!! Welcome to the boards.

Miami Girl,
One of the positive things of me getting the CIDP is I’ve learned to stand up for myself when it comes to the Doctors. If something doesn’t work or the side effects make me miserible I’m not taking it. Luckily I’ve found Doctors who are welling to listen and work with me. I’ve had some very trying experiences in the ER, trying to talk to some MD who thinks they’re God when they have no clue on the disease or treatments. It’s made me more self-assured and more vocal if nothing else. Got to look for anything positive.
Pattie

Herself

I can’t agree with you enough on that. Too many times doctors run all of
their patients through, like cattle…without listening to them. That is why
this neurologist visit next week will be my last one with that doctor. I’m
going back to my first one in January.

Staying positive is key…even though I fell through a little hole several days
ago…about my computer…but, you pick yourself up, dust off and continue
on.

Life is too short to worry what if…what could have been, or what should
have been…

Miami Girl

to badmommy
I got the same thiing from my physiatrist about winning the lottery. I told him I would give him my winnings. LOL My husbands favorite saying is that it is like winning the lottery in 5 countries all in one day. When he told his mom that she looked at me and said well at least somebody won a lottery. LOL She is trip and I love her dearly so when I am having a really bad day I call her and we either talk on the phone or she comes out to see me or she sometimes takes me to lunch if I can get myself up and dressed. I have always been so lucky to ge the crappy end of anything but have managed to turn it around. LOL
To anybody who has a doctor who thinks they are God I have a solution to that. As I get ready to leave the office I ask them when they got promoted to God because the last I checked they are in a Practice and are not perfect. With that I leave and one other thing tha I have found is that if they are within a hospital group then I make phone calls to the administration to make a complaint on how was treated and have found that to help. I actually had that happen right before I had surgery last week by the anestheoligist(spelling?) he made a statement to me that he will do what he needs to to get an IV line and since he was the doctor I had no choice unless I wanted surgery canceled. When he walked out of my room to the desk right next to it I told the nurse he better get off his high horse because he is in a practice and I know my body and after several surgeries know what works and what doesn’t. He came back in with a different attitude because he heard me. I was still angry so I called and talked to the surgical supervisor and it turns out he is there on a temp basis to see if they will offer a position to him or not. The supervisor was so glad I called because if people don’t call they don’t know and she was forwarding my complaint onto the head of anesthsia. Like I said to her how many others has he treated this way and they don’t complain especially the elderly and there is a high percentage in my area of elderly. I heard today he will not be ofered a position. Just always advocate for yourself and don’t let thm railroad you ever it is your body and your health.
Sincerely
Jody

Good for you! I don’t hestitate to complain when I have poor service and on the same note I am the first to sing a person’s praises. Doctors are no different than the clerks that wait on me at the store – they need good customer service skills too.
I always turn to my docs when they want to try something and ask them if they would do that to their wife/daughter (especially when they were so eager to push prednisone down my throat). It’s amazing how many retracted their suggestion when it is phrased to them that way, LOL!

Wow, I guess I am really lucky. I see a neurologist, a nephrologist, a retinal surgeon, a general surgeon, a podiatrist. ALL of them listen to me. ALL of them lay out the options and let me pick. I have first choice on what happens to my body. One of them said: “I am just a plumber with really high-tech equipment”. Am I lucky or what!

Bill – You ARE lucky. We’ve experienced good & bad dr’s. I actually got into a yelling match with Emily’s MDA neurologist over the Prednisone. She wanted to increase it & I wanted my daughter off of it.

Once you’ve had a bad dr you appreciate the good ones SO much more!

Kelly

Bill I have to say you are very, very lucky because for the most part I have had pretty good doctors but that is because I had trouble finding a family doctor to begin with and he knows not to send me to the ones with attitude. there are times though when he doesn’t know so we learn the hard way. When you have a are condition it makes this even harder because some doctors believe that if they haven’t heard of it it doesn’t exist. My son has dextracardia but also his heart is backwards also he has another rare problem called Poland syndrome but he is also missing 5 1/2 ribs on the left side among about 10 other diagnosis like kartegeners, seizures,etc. I wound up running into some of the worst doctors trying to get him care because all they say was what our initial cardiologst said which was he will not live to his first birthday now 16 years later they don’t argue with me about him now I have to argue for my own care and this gets ridiculous. So believe me when I tell you that you are very, very lucky to have such great doctors. I am hoping for that when I go see the new neuro since mine moved to CA I don have one anymore.
Sincerely
Jody

Bill,

Any houses for sale in your area? 😀

I think im gonna ask to have a dose of IVIG next week. its been 4 weeks since plasma theresis and i have numbness and tingles.. Havnt had ivig in a while (a year almost)

my original doc had my dosage of azathroprine too low and my steroids too. I hate the methylpreg. Had a period i was addicted but now cant stand it.

I was admitted into a medical ward with a line infection. I swore myself blue that I was relpasing. They just smiled and said its the infection…. I was told I could go home on the saturday. packed my bag, then told I cant go, but couldnt be told why cos the doctor had gone of to lunch and I had to wait…

rude eh. So myself and my girlfriend waited for 2 hours for ‘lunch’ to be over. No one saw us. Had to get my plasma nurse to come in and ask as no one would tell me why..
My neuro doc found out on monday mornign and got me transfered to the proper ward.

Alot of docs and nurses mean well, but dont get we have lost some dignity needing help and depending on others to do simple things