Brother newly diagnosed – still in hospital

    • Anonymous
      December 26, 2006 at 11:26 am

      Hi Everybody,

      My brother [47yr] is currently in the hospital, newly diagnosed by GBS. This will be his 5th day of IgG [??] treatment. He had been sick with bronchitis the two weeks prior to the paralysis coming on.

      I’ve been scouring your forum looking for nuggets of wisdom from the “real experts’. I hope to pass on suggestions / comments to my sister-in-law and brother on what-to-expect-next etc — just so that they can be proactive and prepared.

      [*]One question that I have is that because I have autoimmune diseases — is this a reason that my brother came down with this? I know that autoimmune diseases can cluster in families — so this makes me wonder if my brother getting GBS is just another variation of AUTOIMMUNE striking our family. –??? —

      I appreciate any and all advice / suggestions / comments / links… that any of you can offer.

      Best wishes…


    • Anonymous
      December 26, 2006 at 12:08 pm

      hi jann & welcome,

      probably. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      December 26, 2006 at 1:01 pm

      [/COLOR][COLOR=Blue][COLOR=Black](cut and paste in browser)[/COLOR][/COLOR]

      [COLOR=Blue] [COLOR=Black]
      (cut and paste in browser)

      [/COLOR][/COLOR]This second link has some really good information and also links to other articles/papers that may help you prove your need. I didn’t have time to read through all of them but I hope something in there will be of help to you.


      You can find some information at these links. Also the GBS Foundation has some excellent material about GBS. You get the information mailed [snail mail] when you regester.

    • Anonymous
      December 26, 2006 at 7:13 pm

      Hi Jan, this website [B][/B] (cut and paste the link into a broswer) when it’s up (website is down atm) is a great resource. It’s the Multiple Autoimmune Disease Genetics Consortium, lots of great information on there. I have several Autoimmune Diseases as you can see from my signature here. The links in the post above are great too. If there is anything I can help with feel free to email me anytime.


    • Anonymous
      December 26, 2006 at 8:21 pm

      You are looking for sense in a disorder that is a “syndrome” which means that doctors are not sure how to prove what it is….no germ that they can label as causing it. I am still trying to make sense why I got it TWICE…20 years apart. Mine was from stress….no flu shots, no flu, etc.
      There is a book by Joseph Heller called NO LAUGHING MATTER who wrote about his experience with GBS.
      I am in my third month of waiting for my body to regenerate the myelin sheath. RIght now I still cannot walk and do not have a family to be there for me. I think that makes a BIG difference. I also wonder if it won’t scar me emotionally. Many of my friends dropped out of site when they knew I was alone at home. I wonder what the lesson is that I am to learn from this.
      Your brother is lucky to have a brother like you. Mine hasn’t helped one bit. Just keep what you are doing and be there for him.

    • Anonymous
      December 26, 2006 at 10:53 pm

      Hi Guys… and Carolyn

      Thank you for taking the time to respond. The links are great information / references. I haven’t completely explored them… but I spend a lot of time researching so I’ve added them to my collection. — sigh — seems to be my purpose in life for the last 10yrs or more.

      My brother seems to be progressing — after 4 days on the IvG (?) treatment he is able to lift his legs somewhat — it takes a lot of effort though. He thinks they will be transferring him to an intensive rehab hospital — a sort of “bootcamp” rehab. I am learning that like all the other autoimmune diseases this one is highly individualized. I guess we will see how the rehab goes.

      Carolyn: I am so sorry that you’ve experienced this TWICE. The nuerologists told my brother that they didn’t know of a patient that had a reoccurrence — so that’s disheartening to hear. I think my brother’s experience was also triggered by stress. He’s a nice guy that has been doing too much for too many people for too long!!! I also have autoimmune issues — nothing compared to GBS though — and mine were triggered by stress too. Is cortisol the culprit?

      I’m the big sister… I’ve ALWAYS looked out for him — so he has no choice as far as me getting involved in his care. Ha!

      I’m sorry that you don’t have the support that we all need when we’re not feeling well… and as far as lessons to be learned… ??? — ah well, that’s an individual thing too. I determined that one of my lessons was about setting “boundaries”. I hope you do not let it scar you emotionally… resentment is a slow poison.

      Again… thanks to you all!

      Best wishes…

    • Anonymous
      December 27, 2006 at 9:26 am


      be sure the rehab place knows that gbsers can NOT be over exercised. it may help the muscles, but plays havoc with the nerves. the balance is all pt/ot must be recovered from in 12 to 18 hours or it is too much & will hurt/slo his recovery [or do much worse – this is a serious item not to be taken lightly]. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      December 27, 2006 at 9:41 am

      Thanks Gene…

      “…the balance is all pt/ot must be recovered from in 12 to 18 hours…”

      Just to be clear… whatever therapy he has, his body should be able to recover from it in 12 – 18 hrs. —??? —- does that mean that he should wait 12-18hrs between therapy sessions -???


    • Anonymous
      December 27, 2006 at 11:06 am


      yes. good ques #2. i guess yes until he can tell the sessions as a whole are not draining him. even during pt/ot if he should feel major fatigue coming on the pt/ot should stop. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      December 27, 2006 at 11:37 am

      Hi Gene,

      OK – I got it. I’ll pass on the info.

      Thanks so much!


    • Anonymous
      December 27, 2006 at 11:25 pm

      I think you might be right about cortisol. I am currently reading a book on that and will let you know. I have had a passion for reseaching health issues. I have also had some incorrect diagnoses from doctors which lead me to do this. I had gotten shingles when I got home from backpacking through 10 countries ALONE in Europe. The dermatologist called it “FLEAS” and gave me a prescription for flea powder! I paid 60 bucks for that diagnosis!! My cousin diagnosed it over the phone. I took vitamin C and they were gone in 2 days. I just read an article that said the Third leading cause of death in the US is medical mistakes. So, I am one who questions how much some doctors really know. That is why I chose to take my many supplements in getting over this GBS. I like how the doctors said we don’t get this twice. Wish they would have told my body that! But I think 20 years between is a long time. I do not think that most GBS patients need to worry about getting it again. The stress that I was under most definitely brought it on a second time and a lot worse. I took care of my mother for almost six years and taught at the same time. Then she died so that year was a mess with PTSD. Then I moved. I had enought points for three breakdowns! Gee, that might have been preferable to GBS!! Jann, I have no resentment about the lack of help being offered by my brother and my so-called friends. I am more amazed. I have read that alot of MS patients have anger that brings it on. I know 2 people with MS and both have unresolved anger. MS is like GBS only stretched out over many years. My first GBS occurred when a close friend had MS. We learned that each of us needed to sleep with our feet sticking out of the covers or they would get numb. Anyone else find this?

    • Anonymous
      December 27, 2006 at 11:48 pm

      Hi Carolyn ~ you stated that “MS is like GBS only stretched out over many years”. Would you please reference the resource from which this is quoted? We are (the GBS family) always looking for credible sources for our files. Thanks much!

    • Anonymous
      December 28, 2006 at 2:26 am

      My understanding is that MS is like GBS except that it affects the CNS versus the Peripheral Nervous System in GBS/CIDP. MS has several subtypes just like GBS does, such as Relapse/Remitting, Chronic Progressive etc. The primary difference being the area affected, beyond that there are many similarities.

    • Anonymous
      December 28, 2006 at 1:10 pm

      Hi Carolyn,

      Ahhh — it’s good to ‘talk’ to someone who is also interested in the nutritional approach to health issues. I also take a lot of supplements — the biggy being high amounts of essential fatty acids (EFA) — specifically Omega 3’s. I take 6grams a day right now. It has helped enormously with my dry eye issue. I just recently learned how important the ratio is between Omega 6 to Omega 3.

      I had been taking 4grams of fish oil when my (holistic) cardiologist suggested I could up my fish oil to 6grams. He also suggested I keep my vitamin D levels way up in the new recommended levels — above 50ng/ml because of my autoimmune issues. I don’t really have any heart issues, I just wanted an assessment of my heart health.

      OK – so back to the EFA story — Well, I had also been taking a product called BioTears. It’s specifically for dry eyes. It contains a proprietary blend of ingredients one of which is GLA — which is an omega 6. Well, when I upped my fish oil, I decided to stop taking the BioTears — just to limit the number of pills I was taking. Well, after a few months I noticed that my eyes were significantly drier. I was having to use my TheraTears again — several times during the day. I hadn’t had to do that in years. So I did some research and I discovered some trials with Sjogrens patients and omega 6’s. Well, then I did some research on Omega 6 and found information about the ideal ratio is 4:1. Omega 6 to Omega 3. Well, that made me look at my BioTears bottle and lo-and-behold I see the omega 6 ingredient. So I added back the BioTears and within two weeks my eyes didn’t feel so dry — I don’t need to use the TheraTears except occasionally.

      OK — so the BioTears folks are going to say it’s THEIR product exclusively that is doing the trick for me — who knows ???? And I also need to say that I still have dry eyes — so I haven’t found a cure or anything — my eyes are just less dry by taking the EFA’s. And yes, I know about Restasis which is a rx for dry eyes. I actually used it and it worked for me — which it doesn’t for everybody. I just got to thinking about the whole Vioxx scenario and I decided I didn’t want to risk my eyes to a drug that has only been on the market a few years.

      BTW: One of the doctors that I see when I want to have nutritional testing done recommended a test called: Individual Optimal Nutrition (ION). It’s by a lab in Georgia called Metametrix. Have you heard of them? I plan on having this test in January. It’s expensive — $680 or so, but this is the kind of information that I want. One of tests they do is for EFA’s — and they provide the ratio. Here’s the link to a sample report if you are interested:


      Also, you’ve been tested for Lyme’s right? You mentioned the rash and “fleas” — well, it just made me think about Lyme’s. One of my son’s neighbors became paralyzed over a couple years time — neck down — and I think they told him it was ALS or some other thing. Well, this went on for years and then I guess they decided to test for Lyme’s and lo-and-behold. I’m not sure what they can do for him now though — it went too long undiagnosed I guess. I really don’t have all the details so I may be off on some of this story — but not about the part where if they had done the Lyme’s disease test early, he wouldn’t be so paralyzed.

      You know I think sometimes people (friends) just don’t know how to react when people go through some life changing event. Like in your case — being struck again with GBS. Oprah has had some people on that went through the extreme weight loss procedures — and they describe the same behavior. — ?? — Friends just dropping out of sight. It is AMAZING and I don’t get it either. Maybe you’re supposed to find new friends — that’s the lesson. ????

      Let me know if you make any (nutritional) discoveries.

      Take care… and all the best…

    • Anonymous
      January 1, 2007 at 10:54 am

      Hi Everybody,

      OK — my brother’s been moved to a rehab hospital and will start his therapy on Tues 1/2/7. I did pass on the caution about taking the therapy very slow — I just wish I was there to make sure every detail is covered properly — like I’m worried that the therapists might try to “bully” him into trying harder or something – ??? ( I have no indication that this might happen — it’s just his ‘big’ sister worrying….)

      On a practical matter — he’s not able to answer or hold the phone since his arms have not “come back” yet. Someone has to answer and hold the phone for him. Is there a handsfree / headset / device that can plug into the phone that has a remote answer button / toggle…. ???? —
      I tried doing a search but thought maybe you folks might know of a SPECIFIC device / brand that I could look into. — ??? —

      Also, I’ve been reading through the posts here and I saw one that suggested the wife of a GBS patient contact the local GBS advocate / support person. Is there a main list of these by state/ city somewhere?

      I’m trying to think ahead somewhat and thought an ‘advocate’ might be a resource to line-up in case my brother’s progress stalls. I hope not but –??? — For example, he lives in a two story house… he might need a bed downstairs… there are steps to his front door… he might need a ramp…
      — ??? — dunno… ????— just trying to anticipate some things because I don’t think my sister-in-law is able to right now.

      Again… thanks so much for your comments / suggestions / tips.

      Best wishes…

    • Anonymous
      January 1, 2007 at 1:49 pm

      Jann, best wishes to your brother.

      Do you know the background of the therapists and doctors treating him? Mine were familiar with neurological injuries — mainly because stroke patients deal with a similar kind of recovery. (My experience says it’s not necessary for therapists to work exclusively with GBS patients.) My intensive rehab consisted of 3hrs/day for six days, much of it centered around real life: learning how to bathe and shave with hands that barely functioned, and limbs that were severely weakened. Occasionally, while in hospital, my therapists did push me. I’m glad they did: I never felt the disease got the better of me.

      I moved back to my two story house a week after getting out of hospital. (I had friends move a bed onto the main floor since I live alone.) A week later I was walking unassisted, awkwardly — but like a real person. Three weeks out of the hospital I requested a handicapped placard so that I could resume driving and not worry people around me with running my errands.

      Skilled and knowledgable therapists are truly motivating. There were some people around me who wanted to see me as an invalid and do everything for me. I’m glad I didn’t let them have their way.

      Just as everyone here has a unique experience with GBS, your brother’s experience will be unique. Would he need a ramp built? Well, it depends on [I]his[/I] recovery doesn’t it?

    • Anonymous
      January 1, 2007 at 2:37 pm

      Thank you ‘olav’ for such a kind and thoughtful reply.

      I understand your (inner) message and caution to respect the therapists — my niece is an occupational therapist so I just hope that he gets someone like my niece.

      However, unfortunately (?) he hasn’t had any therapy since being transferred to this rehab facility on Friday — seems the therapists don’t work weekends or holidays??? !!! Is this typical? My sister-in-law just told me this and I’m at a loss for words. ???? I understand the need to go slow, but isn’t time of essence too?


    • Anonymous
      January 1, 2007 at 4:58 pm

      Truth to tell, nothing is going to speed up the regeneration of myelin: not his therapists, not his doctors, not any medication.

      My therapists started out teaching me how to swing my weight around with what muscles I had so that I could get out of bed. Seems silly now, but “nose over toes” should’ve earned someone a Nobel prize. I used it again when I was having difficulty with stairs. Worked like a charm.

      I remember being totally exhausted when I arrived in rehab Saturday at noon. They didn’t evaluate me until Monday morning. After just a week in the ICU, I’d forgotten that people take weekends off. It was strangely comforting to know that I was getting back to normal life so soon.

    • Anonymous
      January 1, 2007 at 10:22 pm


      Here is a site with some handsfree type headsets, maybe something on there would work [B][SIZE=1] (cut and paste into a browser)


    • Anonymous
      January 3, 2007 at 10:25 pm

      Judi Z,
      Unfortunately, the relationship that I saw between MS and GBS was not a study but a close friend who had MS at the same time I had GBS. That was the first time I got GBS 20 years ago and she has since died. But another friend with MS kept hers away with the Gershon died and lived much longer.

      I seem to be allergic to fish oil/Omegas. I took them years ago and they built up in my system since they are not water soluable. I had a migraine equivalent which means no pain but it hit my vision center instead of my pain center of the brain and for a split second I saw a hot dog suspended on the ceiling. Not kidding. Try and explain that to a doctor! Luckily my wholistic doctor diagnosed it perfectly. I also got ice cream headaches for the first time in my life. So, as a teacher, I ask students who have problems concentrating, if they get ice cream headaches. MOst of them do.This tells me that their learning disabilities might be that they are hyperallergic. Once the fish oil was out of my system, the ice cream headaches went away.
      I let my body tell me what is wrong and what it needs. I found that when my eyes were sensitive to light and dry, I needed B2. There are lots of other simple ways to give the body what it needs but too many to type here. Glad that you are interested.

    • Anonymous
      January 13, 2007 at 7:12 am

      [QUOTE=janz]Thank you ‘olav’ for such a kind and thoughtful reply.

      However, unfortunately (?) he hasn’t had any therapy since being transferred to this rehab facility on Friday — seems the therapists don’t work weekends or holidays??? !!! Is this typical? My sister-in-law just told me this and I’m at a loss for words. ???? I understand the need to go slow, but isn’t time of essence too?


      As you may have already learned, there is a whole routine when entering a rehab hospital. You must meet with several people, be evaluated as to the specific therapy you will receive, and to what extent you will receive it. A care plan has to be developed and then followed.

      Weekends are usually laid back at rehab. Saturdays usually consist of ‘half day’ sessions. Sundays, just like God, are your day to rest for the following week. Later in recovery Sundays are also used for home visit days.

      Rehab can be demanding, disheartening, and fullfilling depending on which day of the week you ask the patient. I hated Mondays and lived for Sundays.

      REST can never be stressed enough. I would nap between therapy sessions ever day and hit the bed right after dinner.

      I wish your brother the best.


    • Anonymous
      January 13, 2007 at 10:44 pm


      If your brother still needs something so he can use the telephone without holding it in his hand, I have a headset that he is welcome to have.

      It consists of a unit that plugs into the telephone (where the handset usually plugs in), and an earphone that hooks over the ear with a tiny microphone attached. It looks like the kind of headset you often see receptionists use.

      I used it when I wanted to talk on the phone, and have my hands free to do other things. I no longer use it, but if you think it would help your brother , I’d be glad to send it to him.

      If he doesn’t need it, and if anyone else on the forums think it would help them, please PM me and give me your name and address. I’ll gladly send it.

      A company called Hello sells them. It’s made by Plantronics.

      Best wishes,


    • Anonymous
      January 15, 2007 at 11:05 am

      Hi Everyone,

      Since my last post I have travelled to see my brother and being here… seeing him has made a huge difference.

      He still has not gained much mobility — arms and legs just showing the beginnings of movement. The occupational therapists brought him a device for his phone that allows him to answer it on his own. His thumb is able to move so he can “click” the remote device and the phone is answered on speaker-phone. He is satisfied with that for now.

      [B][COLOR=”Red”]Suzanne: Thank you so much for your spirit and kind offer of sharing your phone device.[/COLOR][/B]

      My brother’s therapy consists of some water time where the therapists gets in the water to work with him. He especially enjoys this type of treatment since the bouyancy allows him to “move” more freely. They also have this device that sort of suspends him and then he can “walk” the halls somewhat — he thought that was beneficial. It helped him “remember” the shifting of weight to each leg that walking requires.

      Yesterday he was given a 6hr pass and was allowed to come home. My sister-in-law and I had a couple of challenges — getting him up the steps into the house and then getting him back in the car. It was raining and well I’m afraid we resembled a couple of keystone-cops — BUT we did it. His family really hadn’t celebrated Christmas yet, so we went ahead and put on a nice dinner, Christmas music, opened gifts etc. The time went by fast. We were worried that he might be depressed / discouraged about going back to the hospital, but he seemed OK. –?? —

      One day last week, a previous GBS patient came back to visit the therapists at the hospital. They told him about my brother so he came to visit. He had been diagnosed back in Aug ’06 — had to be put on a respiratory and was put into a coma for three weeks — wow… a much different experience than my brother’s. Well, to look at him now, you would never know that he had gone through all that. So his mobility recovery has been about 6mos.

      You know— God brings people into your lifes at the right time — this man coming to see my brother was an enormous gift. Also, the therapists were so happy to see him. I’m sure it was gratifying to see how their therapy helped him.

      Thank you all again — your support, reassurance are really appreciated by my family.

      Best wishes…