Right now in 2nd GBS experience 20 years later
AnonymousNovember 20, 2006 at 11:25 pm
I had GBS in the Spring of ’86. Had a wholistic doctor and was not hospitalized. Took lots of Vitamin C which I think kept some of the pain and the numbness away. Never lost the total ability to walk. I found that lots of adrenal extract reversed it. It was still a devastating experience.
Now twenty years later I have it again. This time it is worse. I think stress brings this on in my case. My mother died after I took care of her for 5 and a half years. I watched GBS attack my body for 4 weeks. I took tons of vitamin C which I think slowed it down. I took MSM to help when my breathing got difficult. I did reflexology on my hands to slow the inflammation. I took lots of adrenal extract as well as many other supplements to support my body. But around the fourth week I lost feeling in my legs and feet; I fell and fractured my ankle. When I went to the ER, the doctor told me not to walk on it until I saw an orthopedic doctor. I had told them about the GBS and that I could not walk or use my arms for crutches and they still would not admit me. I told them I lived alone and they still sent me home. SO here I have been for the past 6 weeks, living alone, crawling on the floor slowly, eating on the cold linoleum kitchen floor. I have someone bring in food twice a week. It is a nightmare. My long silky blonde hair matted in two days after the ER experience. I do not know if I shall have to cut it all off. I think my hair went into shock after the ER – wondering how I was going to survive this alone. I tried to get an appt with my wholistic doctor in Shillington but the nurse would not let me make an appt. She insisted he wasn’t taking new patients and considered me a new patient since I had been living in Florida and not seen him in a few years. I even wrote him a letter but wonder if he even saw it. He used to borrow my wholistic books. I know he would remember me. Suzanne Sommers interviewed him for one of her books. A close friend of 40 years will not help me although she lives five minutes away. She tells me that I am in her thoughts and prayers but she cannot help me at this time – she has her own problems. I think it is fear that it keeping her away. IF she picked up take out meals that I would pay for, it woud mean the world to me. I wonder how people can take the time to go to church but not take the time to keep a friend company. I have a phone conference with my counselor in Florida once a week which really helps get me through this.
SO this is the start of week 10. I don’t know how long I can keep my spirits up. I envy those going through this with family. I tell myself that I might be better off at home. The hospital would not have allowed me to take all my many supplements and exposed me to other infections. I stopped taking my 15 grams of vitamins C for a 24 hour urine sample the first time I got this in 86 and it felt like I was hit by a truck. So I know it is helping me. The local hospitals do not do the plasmapheresis or IVIG. I wonder if my insurance would have covered it. This has been an interesting experience. I moved from Tampa to a small town in PA where I used to live and teach. I found that people in small towns aren’t necessarily more helpful. Many know my condition and do not offer to help. Perhaps this is a blessing. They cannot bring colds into the house. I fear that. I fear alot. But I shall continue to live on the floor. I have learned to put one knee on the couch and throw my body up. I wonder what lesson there is to learn here. Anyone know any tricks to get fine long blonde hair unmatted. It is now above my collar. My body and my hair went. I don’t know if I my spirit shall recover from this. I had post traumatic stress disorder from my mother’s death and now this. I have a feeling I shall live in fear of stress bringing this on a third time.
AnonymousNovember 21, 2006 at 8:37 am
I would call Visiting Nurses Assoc. or someone like that –
I live in Tampa and my Neuro Dr. is from USF – if you want I can give you her name and you can ask her to find a Dr. for you were you live. Please feel free to email me at [email]email@example.com[/email]
AnonymousNovember 21, 2006 at 11:41 am
Dear, oh my. You are in a pickle and I understand as I am a single person also. However, I do have sisters locally so I know I would not go without some help. Sitting here in Oklahoma City… so far away from you, as I wish I could drive over after work today. I’m sending you some healing thoughts and wish you the best. Please keep in touch with us!
AnonymousNovember 21, 2006 at 7:12 pm
I’m so sorry you are having such a bad time with GBS, and especially after having just lost your mother.
About the hair problem, Have you tried using a spray on/leave in conditioner like Infusium? This is good for detangling hair.
You might also be able to call Meals on Wheels, or perhaps see if a local church can help with your meals. They may have other forms of help available to you as well.
AnonymousNovember 22, 2006 at 2:30 pm
You shouldn’t be crawling around on the floor. If you’re at that point, you need to get to a hospital. Is there another one in your area where you can go? My husband Ben started his GBS experience crawling around the house for four days, and it led to him being ventilated for three weeks. Please call 911 and ask about different places they can take you. There’s got to be another option. I wish I were there to help.
AnonymousNovember 22, 2006 at 5:47 pm
I really get angry at your friend. This is a real sad story. I will pray for you!
I wish i lived close to you, i would helped you alot and visiting you evey day and talk to you and help you.
Why are people so mean in your town espcially your so called friend that says she pray for you, she got time to pray but not help. I can not judge her but she is not a good christian. Stay strong and pray, GOD is great. Never loose your faith in Jesus.
I live in Sweden or i would help i promise.
Cant the hospitals or some church sends volentairs ?
Call the churches in your city and the hospitals ask them if they can ask people they trust to volentair. You dont live in 3 world country. You live in one of riches countries in the world someone should be able to help.
If someone does not help you soon call media, call Oprah!
I have always thought the americans help eachother alot and are kind.
Ps. sorry for my poor english. I hope you get better and will get out of this stronger then ever. I have PTSD to!
AnonymousNovember 22, 2006 at 6:37 pm
Dear Carolyn. By all means call 911. Go to another Hospital and tell them your story. Someone will listen to you. You need medical help now. A spinal tape could tell them all they need to know. Even a ER Doctor can care and tell you about GBS. Please don”t wait. You need another Doctor. There are more than one Dr. at any Er. How old are you and do your hands still work. Please let me know. I care and will try and do all I can to help you now. Call local Churches until you get someone or a pastor or ladies to come to see you. There is help and start now. jan sellars
AnonymousNovember 22, 2006 at 8:24 pm
I’m not American, so I hope you will excuse my lack of knowledge of the medical systems in your country.
I simply don’t understand. You believe you have GBS – for 10 weeks now. You went to the hospital and got sent home. You told them you had had GBS before, your breathing was difficult and you live alone – and they sent you home? Also, your local hospital doesn’t ‘do’ PP or IVIG?
I just get the feeling that you are not making a big enough nuisance of yourself at the hospital! To my mind, by not making waves, you simply help the hospital to ignore you.
It might be just me – if I thought I had GBS again, I’d be in that hospital, via an ambulance probably, stating categorically that I wanted to be checked for GBS and I wanted PP (or IVIG) immediately and if I didn’t get it, or one heck of a reason why not, I would want the reasons in writing – in case of any legal action that might follow. If you cannot catch them by the whotsists then catch them by the wallet.
You crawling around on the floor is of no benefit to you, in the short or long term. It might make you one less person in the hospital of course. But trying to be a martyr to GBS unnecessarily really doesn’t help you, or anyone else, much. It could also leave you with some long term issues.
You said that you tell yourself that you might be better off at home. Well, you might be, but I doubt it.
Personally, if the hospital would not allow me to take supplements but treated me for the GBS, I would accept that, if I had to. GBS is not fully understood. It is your immune system over-reacting. The hospital might fear that you taking supplements/vitamins is simply boosting your immune system (and its over-reaction).
Talking of supplements, do you think taking Vit C every day is a good idea? I had thought that it wasn’t – myself, I take it if I suspect a cold or the like coming on, and then I take it in a good dose. But I would not take it daily over the year – because it can have its down side also.
So you have learned to live on the floor. Great – you have learnt the art of survival. Not a lot of fun though, is it? And surely the art of survival is what we do when it is absolutely necessary? But is it that necessary – can you not get determined with your local hospital, see that you get tested for GBS and receive any necessary treatment – whether there or elsewhere? I only mention this because I was transferred to a hospital that could handle PP and IVIG.
I do think that your ‘art of survival’ instinct needs to consider how to use what is available – meaning the medical profession.
To my mind, medical practioners and holistic doctors are not separate entities, they work alongside each other – willingly or otherwise. If you have GBS, I would suspect that you need both.
AnonymousNovember 22, 2006 at 9:32 pm
I agree with Teresa Anne. Quit being a victim and stick up for yourself – nobody else will do it for you. Your health, your future, and maybe your life, is at stake here.
Call an ambulance and go to the emergency room – most hospitals will prioritize your treatment when you are brought in by ambulance. Do not let them push you around. Stop being a “nice girl” and demand the treatment you need.
AnonymousNovember 22, 2006 at 10:04 pm
[QUOTE]I have learned to put one knee on the couch and throw my body up. I wonder what lesson there is to learn here. Anyone know any tricks to get fine long blonde hair unmatted.[/QUOTE] Personally, I would like to witness this circus act, and you are nearly as concerned about your hair as your health. But I don’t want to beat up on you, because Teresa Anne gave you a perfectly good reality check. Please take her advice. Living on the floor isn’t healthy and can’t be much fun…the number is 911.
AnonymousNovember 23, 2006 at 1:14 am
Where in PA do you live. I have a cousin who has been having residual effects from his GBS. He lives in Latrobe. I feel alone in my GBS also even though I have a family/friends. They just can’t understand what we are going thorugh. They mean well but don’t get it. My husband doesn’t understand my GBS and that is frustrating at times. They so want us to be normal but we aren’t. Get some help before you can’t move at all. Remember it gets worse before it gets better. Happy Thanksgiving. I hope someone comes to help you.
AnonymousNovember 24, 2006 at 12:05 am
Your English is fine. It is my faith in GOD that has gotten me through this. I had a friend call the Jehovah Witness hall and the woman called me and said she cried for an hour after hearing my plight. She promised to call the next day. That was several weeks ago. This is my seventh week of crawling and sliding on the floor so I am now used to it. I am getting stronger in my arms and legs but my feet and calves are still numb. I backpacked through Europe years ago. I was in your beautiful Stockholm and saw the Wasa. Thanks for your warm words and concern.
AnonymousNovember 24, 2006 at 12:12 am
You are right. No one knows what this is like. We look fine on the outside. The first time I got this was much easier. I live in eastern PA/ Do you mean that you and your cousin have had GBS?? What are your bloodtypes? I am wondering if this might be affecting a certain bloodtype. I am type O. Cancer runs in one blood type but most doctors have figured this out yet. So simple. I had friends in Tampa offer to drive up to get me BUT they didn’t realized that I could not get into a car. Why would I live on the floor if I could get my body up and into a car. Everything I do is either on my knees or my butt. People hear what we say but do not really comprehend.
AnonymousNovember 24, 2006 at 12:25 am
I had a holistic doctor the first time I got GBS 20 years ago. His nurse said he is not taking new patients although he is. I had a doctor that told me I had fleas when I actually had Shingles! I have had many misdiagnoses in the past like this. GBS took a month in coming because I took so much vitamin C. Linus Pauling, a NOBEL prize winner, wrote on vitamin C. I have studied wholistic health for 30 years. SO it was a month until it stopped getting worse and now I am slowly starting to heal. Calling 911 is not necessary. BUt thank you for your concern. Do you know that there are 100,000 people in the US that come down with infectrions gotten in hospitals? Can you imagine this on top of GBS?? This is why I try to avoid hospitals.
AnonymousNovember 24, 2006 at 1:50 pm
I guess this thread is your public journal for you to keep during your “relapse.” You don’t seem to be looking for help, nor do you seem to be open to taking anyone’s advice. Ben developed an infection during his time in the hospital with GBS, and it could have killed him, so I definitely understand your fear of that happening. However, I’ve had to rush him back to the same hospital several times since then, and he’s been fine. It’s either take him to the hospital where he can get proper attention or watch him suffer at home in my care. I always choose the former, as I can’t just stand by and watch him suffer.
I get the impression that even if you did have someone there to assist you, you wouldn’t budge. Maybe this is why your friend hasn’t been by to help. What could she actually do for you? Even with her there, you would still be crawling around on the floor refusing to get medical treatment. I used to work at a holistic cancer treatment center, and the doctor I worked for always told our patients that if their symptoms got out of control to call 911 and get to a hospital. I’m pretty sure your holistic doctor would tell you the same thing. There’s only so much holistic medicine can do for you when you have an autoimmune illness like GBS. Plasmapheresis or IVIG would probably do you a lot of good right now, but you won’t find that in your Vitamin C tablets.
Anyway, keep writing in your journal because it does make for an interesting read if nothing else.
AnonymousNovember 24, 2006 at 7:30 pm
GBS was the most terrible thing that happened to me. I got the disease in April 9, 2006, the day before I was in my bicycle with my family, next day I could not even stand up, I could not believe it, I was due to go to Italy next day, thanks God it happened before my trip. Anyway, it was horroble. sorry for my english, but I am a Mexican and at that time I was living in Krakow Poland for my work, I had been living there for 3 years, as an expat, life is easy and you enjoy the best, but when I was due to go to an appointment for my next assignment, thats when it happened. We were having family visit in Poland, I was riding my bike and discovering new trails, and suddenling next day I could not stand, at the begining I tought it was just pain, because I was trying new trails, but later in 6 hours, I could not move, the ambulance needed to go to my home and at the hospital I was diagnosed GBS. When I was at the hospital the company I am working for, send me some information related to the disease. I just put them in the drawer, I said, If there is someone that will help me that will be God. Next morning to my very much surprise I could not even move, but my right hand and only rested in the chest. Then I realized that if this was the case, it was for a reason. God loves to be praised, I was going to learn that. So there I was, the scariest thing came later in the day, when they needed to open up my neck and stick a device to change my plasma. I was so afraid, that when I was at the operating room, I did not know how to handle it. So I remembered a passage in the bible “revelations” that describes the face of Yeshua (Jesus) like a bright sun, I concentrated myself on that, I suddenly evevrithg was finished, no pain and nothing. We called on the phone a believers friends to ask them to pray for me, the first night I caught developed in me. I could not cought, my nerves did not responded, the doctors just watched and told us to be alert and call them if more complication arised. Just as a note, the Polish hospitals installations, not equipment are well 30 years old, but the attention of the doctors and nurses if first class in the world, but you believe what you see, and it was scary. Anyhow a I started my plasma treatment, by the 3rd day there was a holiday in Poland and doctor where taking the weekend off. I told the doctor, that by the time he will return, he will see great changes in me. Aside he told me, that he admired my positiviness , but that I should not be very enthusiastic. Anyhow we proved him wrong, thaks God, on Monday I was walking, going up and down the stairs of the hospital without assistance. All the staff was surprised. In 18 days I was out of the hospital and due to Copenhagen for a Benny Hinn crusade, we stopped in Berlin for sightseen, which to tell you the truth I was not able to walk for a long period, as the same as the first two days in Copenhagen, but later we traveled for a Jewish Machol dance seminar in Hungary, where I danced my body off. It so good to be able to move without assistance and supervision.
I thanks God, the hospital staff and my family for all the support.
How do I think everthing started:
1. Living in a foreing country, but I have lived there already for 3 years.
2. I was eating KFC (Kentucky Fried Chicken) every weekend, by the way my family always told me It seemed to be undercooked, which I never believed.
3. Poor diet
4. Believing that you own your life
After the fact, I waked up for at least 3 month feeling my arms weak.
I moved to Italy, I changed my diet, here there is no KFC, but anyway I do not eat pasta and pizza but just once per week.
I have joined a swimming class twice per week
and my post symptoms completly disapeared.
So my recommendations are:
If you are or have been thru GBS:
First focus in God, there is no one else that can help you.
2. after the plasma treatment, you will feel much, much better, every time you go.
3. do not be affraid to go back to your normal life, we are no supposed to be in be and without moving, it takes time, but focus, and you will do it, there is no pain, just walk, run , dance, etc.
4. change your diet, I think that the secret is there, do not eat fat, high proteins like pork.
5. Change your habits, life is one, and should be wonderful
6. Love GOD for the new opportunity he just gave to you.
My life has changed so much, that I will never go back to were I was, I have learned my lesson, and God has been good. Why did it happened, probably because He loves us so much, that some of us, have a hard head and require an special treatment.
Anyway, I hope you the best if you are going thru GBS or you have been. I count myself as a pride winner. but I could not done it myself without God, do not give up. Focus, He is always waiting to be called, no matter what you have done in the past. If He did it for me the lowest of all, you should expect the best for you.
Love you. Hope that my story helps you, to stay strong and believing, He will just do it for you.
Aftermath. I am living now in Italy for a period of 3 years. I am better fit than before, stronger, and happier. I am do to go to my home country in 7 days and tell everuybody what happened to me.
I bless you all: Yevarejeja Adonay veichmereja, Adonay Pana veleja vicuneja, Isa Adonay pana veleja veya sem leja Shalom.
Just a powerful Jewish blessing.
Ciao. I you want to contact me feel free.
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