A little more info…

June 20, 2007 at 11:54 pm

Thanks so much for all of your opinions, what a caring group! First off, when I said a sudden onset of CIDP, it was actually about seven weeks. But to go from perfectly healthy to the state he is in is rather quick even for CIDP. The mother who called me does not use the internet, said when she first heard the dx & went researching CIDP, that it was too depressing for her. The young man hasn’t been able to use the computer since January & his wife is trying to work full-time & take care of him. Apparently they have done no researching. They recently built a new home, but he can’t get upstairs, so is confined to basically a bedroom & an office downstairs (must be a split-level home?)

Apparently the mother offered to buy them a stair-stepper, but they declined, saying that soon he wouldn’t need it? I think they are in la-la land myself, listening to this neuro. I would be thrilled to hear that he does eventually make a full recovery, but I doubt that this is going to happen, at least not with this neuro. I can’t remember if she told me how he was dx, but I never even thought that it could be some other motor neuron disease. It scared me when she said he is unable to move his hands at all or bear any weight. Even at my worst I could make a fist, although my hands had no strength to them. I could also bear weight at my worst, but not enough to walk. This case just sounds so extreme to me, & his age also has me depressed. I just hope he is getting all of the help he should be getting.

CD, that is so wonderful about the recovery your daughter made. Makes me have hope for this young man. I just thought it strange that getting IVIG for 5 days a month has not improved his condition. There are no stages of getting a little better, then getting worse. It sounds more like the progressive form to me than the relapsing/remitting? I wish I could have been more help. I would like to hear from Emily, as her recovery seemed so miraculous to me. I also remember Brokkie being paralyzed for like a year in the hospital, now she is in complete remission & off of all treatments. Anyone but me remember Brookie?

A little more info…

February 22, 2007 at 11:31 pm

To offer a little more info I’ve been playing back the comments Dr Becker had for this caller and I hope I’m able to accurately report some of what he said, but please remember… this is MY interpretation… yours could be different.

Dr Becker explained that GBS is a neurological-autoimmune response to whatever the triggering event was — and he cited mononucleosis, Epstein Barr, campylobacter (sp) and also the hepatitis type viruses. He explained that because these triggering type viruses remain with you, it’s important to that you keep healthy and strong so that your immune system can keep the harboring virus suppressed. Since the immune system needs to be working harder to keep this virus suppressed, you need to support (boost) the immune system.

I know some folks (doctors) will argue this perspective — boosting the immune system in an autoimmune disease. I know this to be a “holistic” view which is different than the “allopathic” view…. and this topic / debate could be / should be a whole other discussion.

ANYWAY… Dr Becker went on to describe how the liver is an immune organ and therefore you need to support liver function. That’s where the milk thistle comes in. I’m very familiar with milk thistle. My husband takes it because he’s on a statin drug. He also mentioned “endol 3 carbonol” for liver function — which is a cabbage extract however, I’m not familiar with this one. He also went on to mention probiotics, oil of oregeno…. and more. I’m understanding that his suggestions wouldn’t be just for GBS sufferers, but for anyone harboring a virus like hepatitis C for example.

I want to make clear, that before anyone decides to act on this information, please check / validate it with your doctor. My research and y’all’s comments here talk about the lingering effects of GBS, the fatigue etc. Dr Becker comments about the importance of a healthy and strong immune system make perfect sense to me, however he is just one source. His information should be researched / validated.

Also, while I’m really comfortable with Dr Becker — he’s very spiritual and I believe in his calling. I’ve been watching his program for almost two years now and I have learned a lot. However, having said that — I never forget that he is also a business man — he does has a supplement company.

The VERY best thing would be for those affected by GBS to call into the show and talk to him directly. He makes it clear that he is NOT your doctor and cannot make a diagnosis, but he can provide information to you that you, the caller can then decide to act on. In fact if a number of people did call it might make an impression where maybe they would do some expanded coverage — ??? — who knows??? I just know that no where else did I see information about targeted nutritional support for GBS and that’s why I wanted to share.

I hope this helps… really… I’m not pushing supplements… not pushing Dr Becker. This info is just for those that are interested in researching a nutritional aspect to their health issues.

Best wishes…

PS — Olay: To answer your question about how Dr Becker KNOWS about a virus remaining in the body — he didn’t address that in his comments. He acted like it was common knowledge. I’ve had extensive testing done that revealed that at some point in my life I had mononucleosis / epstein barr — I have no idea EXACTLY when though. The doctor told me it will always be there and could have been why I was having the autoimmune symptoms I was having. Once you have one autoimmune disease you’re susceptible to others — I have three — which is why I’m always researching… especially the nutritional aspects.