New member in Bali, GBS after Dengue fever

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

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! 😀

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.

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.

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 🙂

😀 Hello again Roma! Tell Jean and Wayan that we are wishing them both well! Told you that you would see more of us in here and it;s still not morning yet! Glad to see you found us! Hugs

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.

Thanks Roma! I wish Jean and Wayan much luck in the next few weeks and hope he recovers fast and gets well soon! Hugs

Hi Roma!

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!

Hi Roma! What wonderful news! Glad to see Wayan is recovering here and hope to hear from them soon. Wishing them the very best! Hugs!

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!

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.