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Guillain Barre Syndrome...

Discussion in 'Fred's House of Pancakes' started by amm0bob, Sep 27, 2012.

  1. amm0bob

    amm0bob Permanently Junior...

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    I have a question to pose to my learned fellow members.
    A dear friend of mine's daughter is currently hospitalized with Guillain Barre Syndrome. She said they are telling her she may go into respiratory arrest and is in the ICU... there is some paralysis now.
    My question is:
    How long does it take to recover from this thing... it sort of took her daughter down quickly, and we are talking a quite fit 21 y/o that doesn't do drugs or smoke... my friend has spent the last 4 days in the ICU with her daughter and said that she thinks she is getting worse.
    I told her to let the doctors do what they do best, and that I'd get back to her with what I'd find out about what she can do to help her recover when she gets out of the hospital...
    I mean, she is going to get out of the hospital, and return to health... right???
    Thanks in advance
    Bob Jr
     
    #1 amm0bob, Sep 27, 2012
  2. efusco

    efusco Moderator Emeritus
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    Sorry to hear about that, it's a pretty rare but serious condition. She will likely continue to get worse for some time, despite treatment, but most likely will start getting better. But the rehab and recovery period is usually several months or longer before full return of strength. She is young and healthy and that makes her prognosis much better. The rapidity of onset, whether there was diarrhea before hand, and if she ever needs to be on a ventilator will also factor into the prognosis.

    But I think she'll be OK (never a certainty) given her youth and fairly early diagnosis. Many people don't get diagnosed until they're nearly in respiratory failure.

    Walking unaided after plasma exchange can take 2-3 months alone after treatment, just to give you an idea of how long this can take.
     
    #2 efusco, Sep 27, 2012
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  3. amm0bob

    amm0bob Permanently Junior...

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    Well... I had a long discussion with Debbie... they still are in the ICU, and her daughter is unable to walk or support herself, and drools a bit... has what she described as unbelievable pain all over... which I am sure has every bit of truth in it because this young woman isn't a complainer about pains and aches (she's quite active athletically, and has won several contests growing up, as well as some dancing competitions)... they haven't intubated her, but they are keeping her there just in case they may have to.

    It appears she got the same flu shot I got last week, more than a couple of weeks ago. I don't think the doctors have told her there may be a link. Personally, I think there probably is a link, from what I have been gleening over the web.

    Debbie hasn't gotten much sleep this week... and I am sure that factor alone can explain the change in her usual mannerisms.

    I brought her some turkey and a couple of other things to eat there at the hospital, mostly because she said she was tiring of the food in the cafeteria at the Roseville Kiaser... she asked me if I had looked up the stuff about the G-B-S, and I said I did, but we'll talk about it next week... her face was so sullen, but I didn't want to give my opinion of what could happen when her child isn't ready to leave the ICU yet.

    I don't know why I feel I have to vet that here, other than this isn't something I want or can discuss with my wife, because I don't want her to think someone else will be taking any of the time we have remaining... and I don't want Susan to go and look up any more fricken diseases that slowly can take your life if you are one of the "lucky ones" that gets chosen by the universe to get it.

    And thank you Evan.
     
    #3 amm0bob, Sep 28, 2012
  4. RobH

    RobH Senior Member

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    I googled "guillain barre vitamin c" and came up with a reference to it by Dr. Robert Cathcart, a doctor I knew several years ago. He suspected that Guillain Barre could be caused by "ascorbate exhaustion". His treatment of choice would have been a vitamin C IV of about 75 grams per day.

    There are both medical politics and biochemistry involved in both GB and vitamin C. No doctor who wishes to keep his license is going to prescribe IV C in a hospital. I think this goes back to Linus Pauling and the McCarthy years. Pauling was a peace advocate when it was regarded as unpatriotic. We've made friends with Russia, do business with China, and yet vitamin C is still treated as a communist conspiracy.

    A form of vitamin C available today is called "Liposomal Vitamin C". It is taken orally, and may be even more effective than the IVs that Dr. Cathcart used.

    There is a joke going around the vitamin D research community that Linus Pauling was so close - he was only off by one letter. Vitamin D3 is a basic component of a healthy immune system, and most people are deficient.

    My read of this lady's condition is that she is low in both C and D, and was subjected to an immune challenge (the flu shot) that her immune system just couldn't handle.

    Her current condition could have been prevented with just a little more C and/or D. Now that she is in crisis mode, massive doses of both would be valuable. While IV vitamin C is not an available choice in a hospital settting, liposomal C taken orally might be an available option (5 grams/day). Vitamin D3 at a rate of 100,000 IU per day for 3 days, followed by 10,000 IU per day for the next few months would provide the maximum support that D3 can do.

    Vitamin D3 is available in 50,000 IU capsules. You can get it online, or off the shelf at stores in Redwood City and Palo Alto. Liposomal C is available online.

    The protocol I mention is for someone in an immune crisis, and only for as long as the crisis is active. Most adults normally need an average of 5,000 to 10,000 IU per day. This can be approximated by taking one 50,000 IU capsule per week. After several months on such a protocol, a blood test should be used to adjust the level toward a level of at least 40 to 60 ng/ml (some say 70 to 80 ng/ml).

    Another treatment that would be extremely valuable if it were not blocked by an intransigent medical ethic is UBI - Ultraviolet Blood Irradiation. It has been used in the past, and works better than today's treatments. The reason it isn't commonly available is that it is too cheap, and can't financially support the research required to mainstream a treatment.
     
    #4 RobH, Sep 29, 2012
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  5. northwichita

    northwichita .

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    From wiki, some of the basic science. ( I knew a real healthy guy who come down with it, just random I suppose.)

    All forms of Guillain–Barré syndrome are autoimmune diseases, due to an immune response to foreign antigens (such as infectious agents) that is mistargeted at host nerve tissues instead, a phenomenon called molecular mimicry.[6] The targets of such immune attack are thought to be gangliosides, compounds naturally present in large quantities in human peripheral nerve tissues. ... [9] However, 60% of cases do not have a known cause. Some cases may be triggered by the influenza virus, or by an immune reaction to the influenza virus.[10] There was increased incidence of Guillain-Barré syndrome following influenza immunization during the 1976-1977 swine flu pandemic;[11] however, epidemiological studies since then have demonstrated either an extremely small increased risk following immunization (under 1 additional case per million vaccinations) or no increased risk.
    endquote.
     
    #5 northwichita, Sep 30, 2012
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  6. efusco

    efusco Moderator Emeritus
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    Tons of different things seem to trigger AGB, minor viral illness, flu shot, etc.
     
    #6 efusco, Oct 1, 2012
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  7. amm0bob

    amm0bob Permanently Junior...

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    Today they are scrubbing or exchanging her plasma I was told... the previous stuff they were doing (injections of immunoglobulins I believe) didn't have any impact. I don't know how you suck out blood plasma without taking out the blood, and frankly, I don't want to really know the details, but I do know that is what is happening right now.

    They are scared... and I know fretting about just staying alive because there is also some risk of rejection of the plasma she will be given.

    When I spoke with Debbie about an hour ago, she wasn't the woman I have come to know... her voice was strained, and she wasn't as engaging with me as she is normally, but, I guess I would be the same way if it were my child or loved one paralyzed with a disease that is eating away at her from the inside... and it's her own body that's doing it. I mean, I do know how to feel unable to help, because of what I have been dealing with my frau since 2006, but when it's your child... like this 21 year old woman... who was the very image of vitality and vigor, and who frankly makes every mans head turn when she entered a room, and most women who saw her either hate her immediately, or try to copy her because they want to have those qualities too... it really brings to point how fleeting life is, and how important it is to enjoy the days you have with those you will choose to be with.

    I appreciate the information I have gathered here. I am not going to give it to Debbie until a little later... I am sort of compiling a series of things from personal testimony of survivors, clinitians and professionals in medicine with some first hand details, and from referencing sources (some of which was gathered here)...

    Thank you for your time
     
    #7 amm0bob, Oct 1, 2012
  8. RobH

    RobH Senior Member

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    There is a similar case documented by 60 Minutes of New Zealand. The 18 minute video is at

    Living Proof: Vitamin C - Miracle Cure? - 60 Minutes - Video - 3 News


    A second video covers the aftermath of the case. US physician/attorney Dr. Thomas Levy speaking before a large audience in New Zealand. Dr. Levy was apparently called in as legal support for the family that was having trouble getting the hospital to include vitamin C therapy.

     
    #8 RobH, Oct 3, 2012
  9. amm0bob

    amm0bob Permanently Junior...

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    Today will be the third day in Plasmapheresis treatments... she will have two more days of it then I guess they will just observe and try to get her to feel without pain. The feeding tube really bothers her, but she is not so bad if she complains I think. Debbie is a wreck, but she is a caring mother, so that is normal in these circumstances I'd imagine.

    As for the suggestions of alternative therapies, I do appreciate the information, but right now the folks in the hospital have her, and she isn't able to swallow a pill right now. When she gets released, I am sure that her mom will make her take several suppliments to help speed up her recovery.

    Thank you for the information... when she is over the hump, I am sure it will help make a difference in her recovery.
     
    #9 amm0bob, Oct 3, 2012
  10. SageBrush

    SageBrush Senior Member

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    Bob, you asked for outcomes:

    It is quite unusual for acute GBS to not respond to plasmapheresis, although I can remember adding adjuvant IVig in an alternating regimen to a few refractory cases. Most patients will clearly be doing better within a week and be out of the ICU. The somber note is that, in addition to the recovery course being drawn out, degrees of partial recovery are not rare. If memory serves, about 70-90% of patients have a full recovery, while the remainder have varying degrees of residual deficit. Those with residua are usually classified as mild, but that does not take into account patient baseline lifestyle. Again, I'm speaking from memory so be a bit skeptical about my numbers.

    All told, I estimate I have treated about 20-30 cases of acute GBS, although none in the last 8 years. This should sound like a lot given the syndrome's rarity. All severe cases in my city came to my attention over a 3 year interval.

    As for Linus Pauling, he was a giant of 20th century science. He was also wrong about DNA (thought it was a triple helix) and he was wrong that Vit C is a magic bullet.
     
    #10 SageBrush, Oct 3, 2012
  11. ProximalSuns

    ProximalSuns Senior Member

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    Best to look for medical information on MedScape or MayoClinic or CDC or NIH websites vs. a car website where one has no clue if fellow members are "learned" or not in medical science.
     
    #11 ProximalSuns, Oct 3, 2012
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  12. amm0bob

    amm0bob Permanently Junior...

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    We have...

    As for just relying on the Mayo CDC or NIH... I have personal experience that differed from those US institutions, not on everything that I have ever been treated for, but I did have an experience with being injured, near my spine by impacting shards of metal and concussion that was not alleviated by those learned folks... my injuries from serving in the military, serving our Nation, were not being helped until I went outside of what the US Doctors were telling me I needed to continue doing... I was in Texas at the time, and I went to a Chinese acupuncturist - and in 3 weeks I did NOT have that kind of pain any longer... back in the 70's teh US Medical Professionals, didn't believe in acupuncture... I went against their opinion... and I can run today.

    That's why I was asking, in here, aloud for everyone to enjoin, without excluding voices that aren't mainstream US medical opinion or professionally driven by those that want everything to fit in a box.

    I know this young woman.

    I work with her mother.

    Her mother has been sitting in the ICU every single day and every single night for weeks now.

    Bra... I was only asking for opinions and advice from here (as well as a number of other forums I frequent) that I/we perhaps weren't hearing inside the rooms at Kaiser or reading from official US sanctioned medical stuff.


    I know there are therapies that are not US mainstream... and with some patients... they work. I'm not saying she will do them, what I'm saying is I will tell her what I find out. And I will qualify my remarks with the puppet replies, errr, those that return to well known sites may not get quoted fully, but I will show there are numbers

    Plus... I admit here and now out loud I had NO CLUE about this syndrome... and my friend... no... my dear friend Debbie... asked me to let her know what SHE could do.


    I have several megs of data now I will give to her to read through when she tells me she is ready for it.

    And in all honesty Bra... I will show your support of CDC and NIH in those notes to her along with all the others ... Debbie and I already subscribe to Mayo... and others.

    Thank you for the data...
    Bob Jr
     
    #12 amm0bob, Oct 4, 2012
  13. ProximalSuns

    ProximalSuns Senior Member

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    Mayo Clinic and MedScape are not US government institutions. As for the Center for Disease Control and National Institute of Health, which are US institutions, they are the world's best medical science resources.

    As for the medical opinions of anonymous users on a car hobby web site, given the amount of solid medical science information available, why would one even solicit such useless information much less pass it on to someone who is absorbed in a medical crisis of a family member.

    "Look here's an opinion I got from someone on a Prius car hobby forum". Is that really helpful in any way?
     
    #13 ProximalSuns, Oct 4, 2012
  14. amm0bob

    amm0bob Permanently Junior...

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    My mother reads PREVENTION MAGAZINE... I know some of the things they print in there is good medicine... if you wish to contribute to the thread, I will read it, weigh it, and pass it on to Debbie if there is something to it...

    If all you're gonna do is be an internet hero or basher... then, not so much Bra. and MAYO does get tall coins from .gov... funded by .gov = .gov by my accounting.

    Today is the 4th day having her plasma scrubbed...she still has a feeding tube... but she did use her arms trying to get ahold of her Mom's face when Debbie got close and was trying to make her move yesterday... I think the hospital is doing a grand job bringing her back...
     
    #14 amm0bob, Oct 4, 2012
  15. ProximalSuns

    ProximalSuns Senior Member

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    It is a commercial magazine selling advertising and writing articles to get you to read the ads. The LAST place one should look to for sound medical advice...well perhaps a car hobby forum on the internet is even less useful.
     
    #15 ProximalSuns, Oct 4, 2012
  16. amm0bob

    amm0bob Permanently Junior...

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    Thanks for your input Bra... [​IMG]
     
    #16 amm0bob, Oct 4, 2012
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