Gullian Barre Syndrome

[BlueKota]

My friend who I have known since I was seven was diagnosed with this last night, and is currently in the hospital receiving treatment. He started out with bronchitis and then began experiencing numbness in his limbs and went to E.R because he could barely stand. He said he collapsed as they were checking him in.

Of course I had to Google it because though I have heard of it, I wasn't aware of specifics about it. I am confused because Mayo Clinic says it can't be cured, and they can only treat the symptoms, but then goes on to say that the majority of people recover.

This probably sounds like a stupid question, but does this mean it just goes away eventually on it's own? It said it can take a couple of weeks to up to a year to recover. I worry about him because he also had a bout with cancer a few years ago.

Next to my family, he is the person who has known me the longest, and still puts up with me any way. I am worried for him.

Has anyone here had it or know about it?

[FarPoint]

1. I have taken care of folks in ICU with Gullian Barre Syndrome

It is a slow moving temporary paralysis like/ viral I believe event...progressing from feet and upward towards head...if it goes to the chest, one will be intubated and on a ventilator... It does dissipate slowly say over weeks moving downward...many have a full recovery... IVIG Gammaglobin infusions is one of the infusion therapies use to help...

[BlueKota]

4. Thank you.

It helps knowing many recover. He said the hospital is planning on keeping him until Sunday or Monday.

[Laurelin]

2. I think it usually goes away on its own

I'm not any kind of medical professional but my friend had it long ago and recovered completely. She was in the hospital for (I think? It's a long time ago now) a few days.

Anyway I'm only posting so you don't stress until someone qualified answers, but really, my friend recovered completely.

[BlueKota]

6. Thank you. It does help me stress less

knowing your friend had a full recovery.

[SheltieLover]

3. Suggest doctors test for Lyme disease

And NOT send the Western Blot to Mayo Clinic.

[BlueKota]

7. There are a lot of warnings up in our county office buildings

about Lyme disease.

[SheltieLover]

9. It is a very difficult disease to diagnose from what I've read

I'm not a medical professional, but have lived the nightmare with one of my kids.

IGENEX (CA) is the best lab to have bloodwork sent. (To the best of my knowledge, Mayo Clinic has NEVER comfirmed a single case of lyme.)

Be very careful of this disease and its coinfections.

When my child was sick with this, our dogs also were. Note we NEVER saw a tick, there was no "bulls-eye rash."

I spoke on the phone to Dr. Ibulaimu Kakoma (now deceased), a veyr gifted vet pathologist at U of IL. His words to me were: "These diseases are easily transmitted by ANY insect that bites for blood: flies, fleas, mosquitoes, etc. and if one dog in your home has them, they will ALL have them, transmitted by the water nad food bowls, and toys.

What Dr. Kakoma told me is, of course, contrary to all the medical "wisdom" on this diease, but proved absolutely 100% correct.

Ehrlychiosis is often misdiagnosed in dogs as lymphoma. Happened to one of my beloved Sheltie kids. The vet's unwillingness to listen to common sense from respected authorities resulted in him crossing the Bridge at the ripe old age of about 6.

The other dogs in our home at the time were treated with Imizol, a cattle anti-parasitic which the FDA approved for this use in approximately 1997 or so. (There ar 2 protocols, I chose the single dose as there is less chance of an allergic reaction.)

Stay safe out there!

[BlueKota]

14. I am sorry you went through this with your

child and about the loss of your Sheltie.

There was a woman who came into the museum where I worked often to do research. Her daughter was on our board of directors. They went to their cabin in the Adirondacks for vacation one summer and unfortunately the Mom got bit and got Lyme disease. She was very ill for quite awhile. She would always warn us to be careful.

[SheltieLover]

24. So sorry to hear of the woman's misery

It is a horrid disease! And quite frequently accompanied by co-infections.

[TwilightZone]

5. Cured and recovered can be two different things.

Recovered, in this context, likely means elimination of the acute symptoms of the condition.

It doesn't always happen on its own and complications can occur. From Cleveland Clinic's page on GBS:

"If you have Guillain-Barré syndrome, you’ll likely need to receive medical care in a hospital’s intensive care unit (ICU). This is so your healthcare team can monitor you for any complications of GBS, like difficulty breathing or blood pressure fluctuations."

https://my.clevelandclinic.org/health/diseases/15838-guillain-barre-syndrome#management-and-treatment

That page also has information on therapies used to treat the condition, just below the portion I excerpted.

[BlueKota]

8. Thank you.

I know the hospital plans to monitor him for several days. This information from the Cleveland Clinic you shared helps me understand this better too.

I have never known anyone diagnosed with it before.

[TwilightZone]

10. It's pretty rare.

It's received more attention in the past few years because an increase in likelihood (6X in one study) has been linked to COVID.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9842533/

On a side note, Cleveland Clinic is one of the best hospitals in the world. Along with Mayo, it's one of my go-to sites. CC often has more extensive information, as seems to be the case here.

[BlueKota]

15. Good to know about the Cleveland Clinic having more info.

It turned out in 2007 it was a good thing a local cardiologist kept up with his medical journals. Mayo Clinic published a study that said if a patient was on BP meds, they shouldn't be advised to take the supplement Niacin to lower cholesterol because it also lowered blood pressure, thus risking it dropping dangerously low.

My primary care apparently wasn't aware and advised me to take it. I ended up passing out on a restaurant sidewalk, and according to a paramedic who was just going into get some dinner, and rushed over to help, he couldn't get a pulse at first and I had stopped breathing. Luckily just as he was about to start CPR I came to. They rushed me to the ER, and they thought I had a heart attack, but one of the doctors called the cardiologist and when he heard my medication list, he knew right away what had happened. According to the nurses I coded 3 times during the night.

The cardiologist came in to see me and told me he had recently read the article from the Mayo Clinic. That's why he knew what happened. I remember the next morning one of the nurses telling me to bury the Niacin in kitty litter, & throw it in the garbage as soon I got home and never take it again in my life. I followed that advice. Luckily once the effects of the combination wore off I was fine.

[TwilightZone]

19. Wow.

I'm glad that you made it through that ordeal and that the cardiologist was aware of the issues, thanks in part to Mayo.

The medical field is, of course, a constantly-evolving thing. My partner is a pharmacist, and there's so much to keep up with.

[BlueKota]

22. A doctor once told me always go over what I can expect and

what to watch out for when given a new prescription or using an over the counter drug or supplement for the first time with the pharmacist. She said they know far more than the doctors about how drugs and supplements will effect body chemistry.

That is great your partner is a pharmacist.

[surfered]

11. People with this syndrome should discuss it with their doctor before getting a Covid vaccine.

[BlueKota]

16. He hadn't gotten the vaccine yet and was planning on

going next month. So that's good to know.

[surfered]

23. Good luck!

[wysimdnwyg]

12. GBS has received some publicity recently because Freddie Freeman's son has it

Freddie Freeman, first baseman for the Dodgers, recently took a brief hiatus from the team after his son, Max, was diagnosed with GBS. One of the things I learned from the episode is that it’s commonly referred to as “get better slowly” syndrome. Max is on the mend, and I suspect your friend will recover as well.

https://www.yahoo.com/news/braves-donation-honor-freddie-freeman-190038222.html

[BlueKota]

17. Thank you.

That's good to know his son recovered

[hoosierspud]

13. "No Laughing Matter" by Joseph Heller

Tells about his diagnosis and recovery from GBS.

[BlueKota]

18. Thank you.

I will let my friend know about this book.

[Warpy]

20. In most people, it's self limiting, meaning it slowly goes away and people recover

Some recover partially and experience weakness and pain in their extremities, usually life long. An unlucky few don't recover, at all. It's a weird syndrome and we can only do supportive care.

Mild cases involve all 4 extremities. More severe cases progress to the respiratory muscles, meaning the person will need mechanical ventilation. Most people have recovered, even from the severe form.

Your friend is in for a tough time,. He's going to be bored to distraction while he's ill and in pain when he starts to recover as unused muscles complain about having to work again. He's going to get discouraged and depressed and bit everybody's head off, that's normal and also goes away eventually, usually as soon as the frustration level drops off.

I hope you're close enough to visit him.

[BlueKota]

21. Yes I am close enough to visit

It helps to know what he will be going through. He's usually an active upbeat person so it sounds like he will definitely find this hard. He works in technology and his hobby is making pottery. He's very gifted at it, and he loves spending time with his grandkids.

When one of us was having a bad day in high-school he would always find a way to make us laugh. There were five of us who usually hung out together. There were four of us girls & him .So I do want to help him.

I am close enough to visit him, and one of the other members of our group is too. Also in one of those weird life coincidences, my sister was just voted onto the board of directors of the hospital he's in, last month. So she can drive me there and find out what their rules are on visitation. He doesn't live that far away either.

[no_hypocrisy]

26. I had pronounced leg weakness and pain for ca. six months,

Last edited Fri Nov 22, 2024, 07:12 AM - Edit history (1)

during the term of my last Covid booster (Pfizer).

Before you jump on me for being a Robert Kennedy, Jr. acolyte, hear me out.

Standing, walking, going up and down stairs were NO problem at all until I got my shot. Immediately the day after the shot until about six months later (when the vaccine wore off), I was terrified this was something permanent. I hung on rails as I ascended and descended stairs and not using alternate legs for both. At times, I needed a cane to get out of bed and walk 12 steps to the bathroom in the morning. I was always fearful I would collapse on the floor.

It was my ankles, my knees, and my legs. The best description was they were unstable.

My symptoms mirrored Guilian-Barr. My cardiologist agrees that my temporary symptoms were due to the vaccine, but believes I had a reaction to the components of the vaccine, not the vaccine itself, and it was more like a variation of rheumatism. Sort of an auto-immune reaction.

I have absolutely no symptoms today.

[BlueKota]

28. Glad you fully recovered.

That makes sense about it being components of the vaccine causing a reaction.

My friends doctors told him, even though his was as a result of his immune system attacking other elements of his body, as well as the bronchitis, they did warn him not to get vaccines as now that he is vulnerable to GB, they may re-trigger it. He is almost fully recovered except for vision in one eye is still blurry.

[Jilly_in_VA]

27. The only person I can remember having it

I remember very well. He'd been a member of the Tennessee football team (I want to say he was the center) about the time Peyton Manning was the star QB, and was on the floor above the one where I worked in Knoxville. Everyone said he was the best patient ever, always appreciative and never losing his cool about anything no matter how bad he felt. I got pulled up there once but he wasn't my patient so I didn't bother him, although I did get yanked in there to help with something, and all I can remember thinking was, holy shamoley, is this dude LARGE! But he was very nice. He's now the head coach at one of the local high schools and doing very well (as is his team).

[BlueKota]

29. I am happy to hear he recovered.

My friend is doing much better and went back to work.