New member in Bali, GBS after Dengue fever
AnonymousSeptember 7, 2008 at 6:52 pm
Hello to you all.
I am writing this on behalf of my friend Jean who is American and has lived in Bali over 30 years, she has a son Wayan Krishna, he caught Hemoragic Dengue Fever, he recovered from that, was released from hospital, then a day later, he stated with tingling in the feet and going up the legs, they went back to the hospital and they stated getting over Dengue, they returned home and the next day had to go back to the hospital. Dr realized that is was GBS, Wayan was critical, he has been in hospital for about 4 weeks, he is now out of ICU after having been very ill, but he can now breathe of the machine. he can move upper half of his body and beginning to move his legs, he has a lot of pain in his tail bone, difficulty sleeping and pins and needles from his nose to his toes. hopefully he will be going home sometime soon.
this is interesting what his Dr. stated be careful with trying to build his immune system, as his immune system was too strong and confused, incapable of deciding what to fight, so fought is all.
i have found this forum in hope that all you wonderful people who either have GBS or know someone who has, and are willing to share info about GBS. Wayan will need a lot of support and info about recovery, nutrition and anything that will help him on the road to recovery.
his mum Jean has been at the hospital all the time, and she is going to need a lot of support in the future. at the moment i am trying to find out as much about GBS as possible, and as soon as they are home, they are both going to need support and will be able to get on the forum themselves, until then
my warm wishes to you all.
AnonymousSeptember 7, 2008 at 7:07 pm
Hi Roma! Pleasure to meet you and glad that you posted here! I have CIDP and not diagnosed with GBS but there are many in here with GBS and can answer many of your questions. And the people in here are wonderful! Very friendly group that I now call my family!
Tell your friend and her son that we all are looking forward to seeing them come in here for support and friendship! Once they come in here, they will surely enjoy coming here and meeting us all! I will keep your friend and her son in my prayers and hope he get’ s well soon!
Dengue fever is a nasty virus! He’s very lucky to have gotten treated for that for that can be very fatal. But I hate that GBS had to come into his life to make him sicker! I hope he gets well soon and am looking forward to meeting your friends! Give them a big cyber hug for me!
And you are a great person to be doing this for them! Thank-you for helping them out! Hugs
AnonymousSeptember 7, 2008 at 7:20 pm
so happy to get a reply so quickly, tks so much
Jean and Wayan are going to need a lot of friends and support.
i have been a friend for years, and i know that Jean would be there for me.
Wayan has started therapy to get his body on the road to recovery, and we are praying that he will get well soon.
i know Jean and Wayan will be so happy to hear from anyone regarding this awful syndrome.
wish u all well
AnonymousSeptember 7, 2008 at 7:26 pm
Hi Roma! Just make sure you check this forum again tomorrow! You will see more posters in here. Sunday around this time get’s kind of quiet then we have us night owls that can’t sleep posting at 2 in the morning like I normally do! And I think I have seen a few others up late posting. Then in the morning the others come out to play! 😀 Tell your friend that we will be looking forward to meeting them! And we wish them well! 😀
AnonymousSeptember 7, 2008 at 7:32 pm
Hello! That poor boy! This is a super support board and you will get lots of info!
I was totally paralyzed also and here it is 9 months later and with therapy, I am slowly walking on my own. When youre in his position it seems like you’ll never get better, but he will.
AnonymousSeptember 7, 2008 at 7:42 pm
Hi Roma, welcome! I am a GBS survivor. I was totally paralyzed and on life support so can empathize with Wayan. I would be more than happy to share with you any info you would like. Just ask. Also, you should register witht he forum or have Jean do that as they will then mail you out lots of the info you need about GBS.
I joined the foundation 25 years ago and know that the package I got helped me to understand what I was going through. I have re-registered and gotten the new package and found it helpful in updating me on strategies and treatments.
Jean will also need support. It is extremely hard on our families when we are so ill and we rely on our caregivers. As a patient, we may seem concerned about how this is affecting our loved ones as we become os focused on healing ourselves. Let us be the ones to help take care of the caregiver!
I look forward to your question. Take care and best wishes to Jean and Wayan. GBS stands for Getting Better Slowly. The recovery is slow but it does happen…but at different rates and ways for all of us.
AnonymousSeptember 7, 2008 at 7:56 pm
hello all you lovely members
tks for being so supportive, it is early morning here in Bali sounds like were on different time schedules, i will call Jean later and let her know she has lots of new friends waiting to get in touch with her and Wayan, she needs all the support she can get, she has been so dedicated to Wayan who is 33 and has a lovely wife and 2 children. i got to show her the forum last week and she was so happy that there is some much info from all you helpful people, who have been touched with this terrible GBS love the Get Better Soon.
i will let her know that there will be lots of info available to her, i know that her main concern is nutritional needs and vitamins, we have read quite a lot of the posts, but once Wayan is out of hospital hopefully very soon, she will be in contact her self, which will make it so much easier for her.
all the best to you all
hugs to you all over there far away
AnonymousSeptember 7, 2008 at 9:19 pm
Welcome, Roma. Jean & especially Wayan.
I have GBS, diag, 4/2007. When I found this forum & all the wonderfful supportive people it has made a big difference in my life & recovery. GBS is a serious illness that effects us all a little different & recovery is at different time frames.
What questioins you have can be answered by someone. What one person doesn’t know someone else will. That is what is so great about this support group we call family. 🙂
Remember like Janet said GBS stands for “Get Better Slowly” :p
Welcome and I am looking forward to reading your posts 🙂
AnonymousSeptember 8, 2008 at 1:04 pm
Hi Roma, Welcome to The Family. The dr is correct about the immune system. The immune system is acting like army troops, they attack everything, usually damaging the myelin sheath that covers the nerves. Has Wayan been treated with ivig? or plasma pheresis (blood exchange)?
Hopefully the drs have perscribed pain meds like neurontin for his pain. It works well on nerve pain where opiods won’t. It is very safe for young people. Can’t wait to meet Jean and Wayan. They are in My Thoughts and Prayers. If there are any questions, please feel free to ask them, or just vent when you need to. Take Care.
You might want to search for the thread here that tells of the needs of patients, what they wished they had or needed while in the hospital. Sorry I can’t remember exactly what the name of the thread is. I’m sure someone else can tell you. You can print out the information and pass it on to Jean.
AnonymousSeptember 9, 2008 at 6:50 pm
i spoke to Jean yesterday and she told me that Wayan was able to sit up by-himself yesterday, so we are all very excited about that. hopefully he will be getting out of hospital very soon. i mentioned that i had posted info on the forum, and rcvd replies from some of the members, and she is very excited.
Wayan and Jean are both going to need a lot of support and i think this is the perfect place, where they will be able to share what they are going thru and get a lot of info from all of you lovely people.
i wish you all well and Get Better Soon
hugs to you all
AnonymousSeptember 11, 2008 at 7:16 pm
just to let u all know that Wayan is coming home today, were all so excited and happy. he stood up the other day and walked a few steps !
hopefully Jean will be the one to update all you lovely people and get to know you all.
all the best to you
peace be with all
AnonymousSeptember 11, 2008 at 10:41 pm
I just want to tell you that you have found the perfect place here for Wayan, his mom, and yourself! Kudos to you for being a wonderful friend and spending the time to find this site! It has been a blessing for me and my family! They dont come here, but there is this trickle-down effect that makes its way to them. Here, I have knowledgible friends to talk to, ask questions, vent my frustrations to, and share good things with, too. Coming here makes me feel better and that rubs off on the people around me. You all will find this place a blessing! Good luck! Our thoughts are with you!
AnonymousSeptember 22, 2008 at 5:29 am
Dear GBS forum members ALL:
Thank you all for your kind thoughts.
Sorry it has taken so long to get back to you. Wayan is home from
the hospital since the 12th Sept. I’ sure he would like to give you a bit
of his GBS history; however his computer is on the blink and I (mom)
am at the internet cafe.
I will attempt to get him here to converse with you but in the
meantime I am very interested in vitamin supplements that will help
with his recovery. I am told a good multi, omega 3, calcium,mag,zinc,
+vit.D. and vit.B complex.
Question: Does anyone know how much calcium and B. vitamins
Wayan should be getting? I want to give him as much as possible but
and afraid to overdose as well. Wayan has been showing signs of allergic
reactions so I would like to be causious. He had a very bad reaction to
a pain killer while still in the hospital. it put him back in ICU for a couple
of days. Strangely enough they had used the same pain killer on him
many times in ICU without the allergic reaction.He also seems to be
reacting to some foods therefore the caution.
Looking forward to hearing from you. Someone is mailing a spare part
for Wayan’s computer so he should be on line soon.
Warm Regards to you all, jean
AnonymousSeptember 22, 2008 at 6:05 am
Hi Jean! Good to hear from you again and am so happy Wayan is doing good now. Still has a ways to go but seeing him out of the hospital is great news. Vitamin B-12 is a good one that helps the nervous system but all the other vitamins, I would be careful with and it might be a good idea if the doctor lets him have the list he can take. Especially with the allergic reaction. Some people even take Fish Oil but then if he is allergic to Seafood it might not be wise. I am very hypersensitive to certain medications and hate trying out new meds for fear of having a reaction. If he does try them, it might be a good idea to start one type at a time to see how his body will handle it first. That way if there is a problem with one he will know to stay away from that one.
Something strange happened to me a while back ago and I never had any problems before. Oysters! I have alway’s loved fried oysters and flounder. We went to a Seafood Restaurant and I ordered my usual as I have always had and after eating those oysters, I pure got weird feeling. My lips started swelling, a rash appeared on my body and it was scary! I’m in my mid 40’s too and have eaten oysters ever since I was a child. Weird how a persons body can become allergic to things. But our immune systems become different and we just have to be more careful. I had CIDP and not GBS but still the immune system does some strange things to our bodies.
Vitamins are good for any of us that have bad immune systems, but being careful at the same time is the best policy. Especially if you have bad reactions to medications.
Get a list up of vitamins that might be of interest and let the doctor know about them to see if he okay’s them. Then to be safe only try 1 at a time adding one as you go. If he reacts, then you know that one vitamin is not a good choice. Glad he is home and doing okay! Great news is always wonderful to hear!
AnonymousSeptember 22, 2008 at 2:35 pm
Hi Jean. Glad to hear Wayan is doing well. I had GBS 25 years ago and I do take a mix of supplements that I feel help me. Here is what works for me:
Calcium with Magnesium – 700mg/day
Vitamin D – 1000mg/day
Potassium – 50 mg/day
Magnesium – 250 mg/day (Extra dose due to a magnesium deficiency)
Vitamin B Complex/Complete 100 mg/day
Glucosamine – 1000 mg/day
Chondroitin – 800 mg/day
MSM – 800 mg/day
The first four help a lot with the cramping and leg pain associated with my residuals. The B vitamins promote healing and well-being in the nervous system. MSM is a natural anti-inflammatory and the Glucosamine and Chondroitin help promote joint health. You can take a third more a day of the last three but I seem to do well on this dose so haven’t upped it at all. I use the last three of them for two reasons….one, I am aging so it helps with arthritis but also because we are stiffer and some of us have diffficulty with mobility following GBS, it keeps the joints lubricated and I am hoping will prevent damage and pain in the joints.
As in anything, I am not a doctor or health care practioner. These are what my physicians have recommended for me, based on my size, pain levels, residuals etc. It would be a good idea to talk to someone knowledgeable about what would be best for Wayan, in terms of dosage. Each of us are different and so we should approach all supplements from that perspective, I think.
Hope this helps.
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