Notes from talk of Dr Jacobs, Dayton OH chapter meeting

    • Anonymous
      October 8, 2008 at 11:50 am

      Dr Alan Jacobs was the speaker at the Dayton, Ohio GBS/CIDP Regional Meeting on 10/4/08 and he gave an excellent talk on Landry-Guillain-Barre Syndrome. He was very informative in understandable language, answered lots of questions from the audience, and treated everyone with respect and kindness—acknowledging that we know and want to know a lot about this illness that bothers us. I thought I would summarize my notes from the talk for this forum. His slides were more technical than how he explained things, so some of what I wrote down from the slides, I retranslated back to “regular speak”. I put things in double parentheses if I could not remember how he explained it because these are more paraphrased. Any errors are mine. He also talked about differences in the variants and about the immune attack which I do not include here because pictures really are important for these areas. This was the second meeting of this Dayton Chapter. There were maybe 40-50 people there (people with GBS and CIDP and families/friends/support people). A lot of us talked about life issues with each other before and after—which was really nice as well—sharing of ways that have helped us and things we have learned along the way. WithHope


      [B]Alan Jacobs, MD
      Dayton, OH
      Talk on GBS[/B]

      [B]Features of GBS[/B]
      Progressive over days to 4 weeks
      Relatively symmetric one side to other
      Mild sensory signs and symptoms
      Cranial nerve involvement especially bilateral facial nerves affected
      Recovery starts 2-4 weeks after progression ceases
      Absence of fever at onset
      Typical CSF and EMG/NCV features (higher protein in spinal fluid with few cells = albuminocytologic dissociation and nerve conduction slowing absent F waves, and decrease in amplitude).

      [B]Precipitating factors (factors that are associated with the start of GBS)[/B]
      Often 2-4 weeks after an illness or immunization
      CMV, Campylobactera, Mycoplasma pneumonia, EBV, HIV, ?hepatitis A
      immunizations–influenza, +/- oral (live) polio

      [B]GBS also has been associated with [/B]
      Hodgkin’s lymphoma, hyperthyroidism, sarcoidosis, collagen vascular disease, and renal disease
      It can occur after surgery, (?), pregnacy, envenomization ((bite by snake or spider)), bone marrow transplant, drug ingestion

      [B]GBS can be thought of as a form of “friendly fire”[/B]
      in which ones immune system, designed to protect you from external threats, instead turns against itself. It can happen because of confusion due to molecular mimicry where a new antigen looks like it belongs to your body or, alternatively or additionally, due to excessive cytokine stimulation of the immune response.

      [B]Important monitoring and supportive care issues[/B]
      Watch for respiratory failure, about 33% are intubated at average of one week after onset of first symptoms
      Chest physiotherapy/timing of tracheostomy (ways to help prevent infection in the lungs and transition off the respiratory)
      DVT prophylaxis (prevention of blood clots)
      GI prophylaxis (help with risk of ulceration/gastritis with stomach bleeding, slowing of the intestinal system/constipation, etc)
      Infection control and skin breakdown on pressure areas
      Autonomic instability (watch heart rate and blood pressure as these can vary rapidly and not be as well controlled as typical)
      Pain control and adjustment/communication issues
      Prevention of joint constriction and loss of mobility (PT= physical therapy, positioning, splints–keep joints in neutral position).

      Each “run” removes about 60% of the body protein.
      Also removes complement, immunoglobulins, immune complexes, cytokines, and interleukins ((the latter two proteins important for regulation of the immune response))
      It is typically done every other day for 3-5 total times.

      [B]IV IgG[/B]
      It is not completely clear how this works or why. Theories include anti-id ((stopping the immune response by binding to the specific part of the abnormal antibody and preventing it binding)), inhibition of the cytokines that overstimulate the immune response, sponging up all the complement, and interfering with antigen presentation by binding up all the Fc receptors on macrophages.

      [B]Arguments for being in an acute care hospital initially[/B]
      Risk of deep venous thrombosis, blood clots that can damage limbs or break off and go to the lung and cause serious immediate breathing problems
      Risk of compressive neuropathy ((where pressure worsens nerve damage))
      Risk of breathing failure due to weak breathing muscles including the diaphragm
      Dysautonomia ((wild fluctuations in heart rate and blood pressure that can lead to stroke, fainting, heart trouble))
      Bladder dysfunction (cannot empty bladder to get rid of urine waste)
      Weight loss/nutrition concers ((need nutrition to heal))
      Psychosocial ((it is common to be scared, saddened, and feel helpless with this much sudden change in health))
      Rehabilitation plan ((need a group plan for recovery since the effects of GBS alter so many areas so much))

      [B]5 phases of recovery[/B]
      1. Experiencing dependency
      2. Encountering helplessness
      3. Wanting to know more about it
      4. Discovering inner strength
      5. Regaining independence

      Bill Werling (the Dayton, OH regional liason) added a very relevant 6th–Learning to appreciate more what one can do in life.

      [B]Standard quotes for recovery[/B]
      85% full and functional recovery in 6-12 months. Maximum by 18 months.
      7-15% permanent sequelae including foot drop, unsteadiness, or numbness/paresthesias
      3-8% die
      Later he said that newer information is sometimes slower recovery (see below) and sometimes less return to full function.

      [B]Recovery-Newer information[/B]
      Serious long term complications and problems occur and recovery can take up to 3-6 years
      Usually the gains back are greatest in the first year–at least half of what will gain back.
      20% still report noticeable improvement 2 1/2 to 6 1/2 years after onset.

      Early on, if one overdoes exercise, it can cause a paradoxical (unexpected) weakness and slow down recovery
      It is very important to work with therapists that understand GBS and how to help form a slow and steady program for stregthening.
      It is also important not to do to little movement or for too limited a time.

      Present in about 2/3–often the most disabling symptom, resulting in a decrease in quality of life
      Degree of fatigue is not associated with the severity of the disease at worse point, event preceding disease (illness or vaccination, etc).
      Amantidine does not help.
      Steady exercise regiment can help. Report of a paper on bicycling for 12 weeks with improvement in fatigue and quality of life. Regiment was three times a week for 30 minutes and included 5 minutes warm-up, 30 minutes of stationary bike cycling, and 10 minutes of cool down. He emphasized the importance of the warm-up stretching and cool down phases to prevent injury or lead to more discomfort/aching from the activity.
      He talked about activities that use arms and legs both.

      He stated that some people think there is a “circadian rhythm” of activity such that people move the same amount totally in a day. If more is done in the day, there will be less movement at night and vice versa. This is an argument that exercise/mobility in the day can help get restorative sleep at night and so reduce fatigue. He talked about studies that if one gets only 5 hours of good sleep a night, one can drive as well as someone who is at the legal limit of alcohol. If one gets only 3 hours of restful sleep at night, this is comparable to someone at twice the legal limit of alcohol. Lack of sleep affects motor (muscle) function and judgment. Getting better sleep is very important to help fatigue. He said no medicines work well to help sleep—they do not give the quality of sleep ((REM)) a person really needs and that one is better exercising naturally so that the quality of the sleep is more restorative.

      [B]Features of CIDP[/B]
      Symptoms progress over more than a month
      Symptoms fluctuate
      Less problems with respiratory failure, dysautonomia, facial weakness/ophthalmoplegia
      CSF protein may be very high
      Marked slowing in nerve conduction
      Steroids may benefit (not so in GBS)

      [B]Goals for additional learning by neurologists [/B]
      1. Better immunotherapies–especially combinations to affect the immune system
      2. Better classification into risk groups and response to different kinds of treatment ((what would work best for any subset of people with GBS))
      3. Better supportive care–autonomic instability (help with the blood pressure and heart rate changes), pneumonia, fatigue, rehabilitation

      [B]New treatments being investigated[/B]
      1. CSF filtration which is supposed to “drain the roots coming off the spinal cord” of antibody. ((This would be by spinal tap to remove and “clean” the spinal fluid to remove antibody. ))
      2. Immunoabsorption–removal of antibody ((this is typically a way to remove antibody/immunoglobulin without removing the other “good” things in the solution))
      3. Interferon beta
      4. Brain derived neurotrophic factors and other cytokines/neurotrophins (proteins) that promote healing of damaged nerves

    • Anonymous
      October 8, 2008 at 12:14 pm

      Excellent info. Thanks for sharing.

    • Anonymous
      October 8, 2008 at 12:59 pm

      thank you for your report WithHope. very interesting

    • Anonymous
      October 8, 2008 at 1:10 pm

      I missed that chapter meeting because of an illness in the family.
      Dr. Jacobs was one of the Drs. that treated me when I was yet undiagnosed with GBS. I very much wanted to hear him speak.
      Do you have information on what Dr. Gupta talked about?
      Thank you for the information from Dr. Jacobs.

    • October 8, 2008 at 1:59 pm

      Thanks for the info With Hope. The New treatment section, do the treatments pertain to both gbs and cidp? Did he mention how far off these treatments are? Do you think any would be worth me investigating for Kevie? I hope you will be able to do this any time you get info from your local meetings. I do not recall ever having such info or for that matter the type of meeting you had in Chicago. It is like you had your own mini symposium!! Lucky duck!
      Dawn Kevies mom

    • Anonymous
      October 8, 2008 at 5:56 pm

      Thank-you so much for sharing this information. Very detailed on the GBS and CIDP. Hmm! Really interesting how I had spine surgery and the treatments they are doing for CIDP with the spine. Thanks!

    • Anonymous
      October 8, 2008 at 7:14 pm

      Shirley, I missed seeing you at the meeting, but Kyle said that you needed to be away to help someone you love. Dr Gupta did not talk at this meeting, but she was there. My understanding is that she is going to talk at the next Chapter meeting in a few months.

      Dawn, Dr Jacobs did not really say the status of the new investigations or much about them. I hope that we will hear more about these at the Symposium. From what he did say, it sounded like the CSF filtration has at least been done, but he did not say anything about it working and whether it would work better than plasmapheresis or the risk/benefit to it. If it did work, it would be another connection between GBS/CIDP and the CNS. I know that immunoabsoprtion is being tested in other autoimmune diseases, but have not heard if it works well either. My guess is that this will be tested first in something more common than GBS/CIDP. Unfortunately, our diseases are rare and complicated. Interferon beta is used in MS. The neurotropic factor is probably the most exciting area on the horizon that I have seen. One problem is that there are different factors for inside the brain/spinal cord and in the peripheral nervous system, so again, I think we will probably see research first in MS. My understanding is that the first three are to stop the damage–like plasmapheresis and IV IgG administration do, but that there is a small light of potential for the last one to help heal the damage. This is why it would be especially exciting.

    • Anonymous
      October 9, 2008 at 4:09 am

      With Hope,

      Awesome!! Great paraphrasing of an obviously excellent speech!! Thank you for sharing this with all………….I am going to print this and it is going in the permanent “hard copy” file of mine. ๐Ÿ™‚ ๐Ÿ™‚

      Have a great day,


      P.S. And……..I have given this an excellent rating!! ๐Ÿ™‚

    • Anonymous
      October 9, 2008 at 7:04 am

      It was my step-father that was ill. The prognosis was not good as he had open heart surgery over three years ago and was told at the time that he
      did not have good veins and they could never do open heart surgery on him again. It took over three hours but the Dr. was able to fix all three blockages, two with stints and angioplasty on the third and most difficult of the blockages.
      I must say, he is a great man. He has never had a biological child but has raised nine step children by two different wives. He is what every father should be like. We are all blessed to have him in our lives.
      I want to be at the next meeting to see Dr. Gupta.
      Hope to see you then

    • Anonymous
      October 9, 2008 at 7:36 am

      Thank you for sharing the information !

    • Anonymous
      October 9, 2008 at 8:10 am

      Thank you!!!!!!!

    • Anonymous
      October 9, 2008 at 8:52 am

      Good Info WithHope, excellent job of retelling!

    • Anonymous
      November 9, 2008 at 10:24 pm

      I recently read your notes from Dr Jacobs’ talk at the September GBS/CDIP meeting in Dayton. Since I also attended the same meeting I can say that your attention and understanding of his message was no less than remarkable. I merely copied your notes and tossed mine away.

    • Anonymous
      November 10, 2008 at 8:06 am

      Hi, glad you are here. Join us more often.

    • Anonymous
      November 10, 2008 at 9:23 am

      Hutsky, it is great to see you on line. Don’t be shy; join us again. Also don’t throw away your notes. Every person hears through filters and understands through filters based on past experiences and current concerns. I am a great believer in use of the internet to help to educate and provide accurate information about medical problems–especially the rare ones for which little is known. I will try my best to add summaries of talks as possible with the hope that those that miss it or are not diagnosed yet or are far away learn more from the wonderful professionals that talk at our meetings. These are rare conditions and there is not a lot of summary information out there and I really, really hope that more information is made available through this site.

    • Anonymous
      November 11, 2008 at 7:06 am

      My question is my doc in indy said i,m not going to heal completly so im pretty much stuck were im at.i,ve had some improve but with improve somthing else messes up crazy.good thing i beleive in JESUS AS MY SAVOUR.or id really be upset did you say 3/6yrs if so what happen,s when you heal in on area and get worse in other?it keeps doing this for last 3yrs now.and then what healed goes down again and i have two more probs .what does this mean??jim:confused:

    • December 7, 2008 at 10:13 am

      These are the notes I was refering to.