new member with questions

    • Anonymous
      March 17, 2007 at 12:29 pm

      folks I m so glad I found this board.
      after a year of every test possible we have a diagnosis of anti-mag (sensory)

      Ive been on rituxan since last may (no response in titres after six months) following the Pestronk protocol
      I’m on hold now/ not knowing if I should proceed? given the recent viral warning from genentech

      I’m very nervous about there long term implications with B-cell depletion
      my question is will this progress to motor function down the road??
      and will I face a long term need for treatments??

      Pestronk hasn’t reported the long term followup from the 2002 study

    • Anonymous
      March 17, 2007 at 2:29 pm

      As far as Rituxan the viral problems can arise up to 12 months after treatment I’ve read so keep your “eye out”.

      Your body creates B cells daily. B cells are continuously produced in the bone marrow that circulate in the blood and lymph. According to Rituxan protocol studies return of B cells to pretreatment levels occurs at approximately 6 months after drug treatment.

      I don’t know how long Rituxan is usually used for in CIDP, but no change in six months doesn’t hold well in my opinion as far as continuing.

      As for disease progression, it’s hard to tell.

      Most patients with CIDP have relapses and semi-remittance (up and down). A smaller population will have a progressive disease.

      Treatment is usually long term in the way of IVIG infusions or corticosteroids.

    • Anonymous
      March 17, 2007 at 7:40 pm

      Zip thx for the note,
      I am referring to the newest release on rituxan (PML) a rare virus that has been seen in the treatment of Lupus,

      also steroids have shown low efficacy with anti-mag and aren’t typically used.
      From the literature it appears that the best results have been with achieved with rituxan. te latest study published Pestronk et al.

      I’m curious to see if there additional long term studies??

    • Anonymous
      March 18, 2007 at 10:14 am

      Hi Michael, just curious how you managed to get Rituxan. Was it based on your antiMAG diagnosis alone? My neuro sent me to an oncologist a year ago but he wouldn’t prescribe it because it is not approved for CIDP. There also is the problem of getting insurance to approve it. I am on Medicare with Aetna as supplemental. How did you get it past your insurance?

      I’ve been on IVIG for over a year which does help some. Took Prednisone a year ago but it had to be discontinued very quickly because of severe side effects.

    • Anonymous
      March 18, 2007 at 2:07 pm

      Norb, its good indeed to chat with some one with a similar affliction.. Ive followed your posts and your well versed in this.

      I assembled a body of literature from the medical journals for my neurologist and the Oncologist here they worked together to facilitate. they use allot of rituxan for cancer treatments. not sure how they got the insurance to go along but I made a cogent argument

      anti-mag IgM as you know isn’t really very treatable..and rituxan shows promise.
      Iam current/ly weighing the options of moving forward.. as Ive found no studies on long term efficacy and now believe that there no good maintenance perspective on this. ( I believe I am buying a little time but at great risk)
      Long term B-cell depletion doesn’t appear to a be rational course?? particularly in juxtaposition to the recent warnings.

      I’m very athletic running swimming etc but I am slowing down.
      after six month of Rx Ive shown no change in anti-bodies

      your thoughts??

    • Anonymous
      March 19, 2007 at 10:29 am

      [QUOTE=michaeljayLong term B-cell depletion doesn’t appear to a be rational course?? particularly in juxtaposition to the recent warnings.
      Michael, I have yet to read up on the warnings. I just came back from 2 months in Thailand and have to take care of many things first. Based on what I know I would agree that B-cell depletion may help with giving myelin a chance to regrow but at the same time would play havoc with the immune system. However, there is one other possibility according to my oncologist. He described two scenarios. Here is the way I understood it: Scenario 1. inside the bone marrow B-cells or a B-cell precursor- the “bad” one with antiMAG “design” – has become immortal and keeps on multiplying. The “bad” B-cells enter into the bloodstream, mature into plasma cells which keep on producing antiMAG M-antibodies. Rituxan cannot stop the process inside the bone marrow. As soon as it wears off, new “bad” B-cells reappear. Scenario 2. The B-cell precursors with antiMAG design behave normally inside the bone marrow. Some of them, after entering the bloodstream, have turned immortal and keep on producing the undesired anntiMAG antibodies. Rituxan would attach to these along with all the others tagging them for elimination. This could get rid of them once and for all. Sounds too good to be true, doesn’t it?

      Take care.

    • Anonymous
      March 19, 2007 at 7:24 pm

      Hello Michaeljay!

      Have you been dx’d MGUS (Monoclonal Gammopathy of Uncertain Significance) too? This is what you might call a benign cancer where the B-cells are produced cancerously, but it is not “dangerous” in itself. It might, however develop into a malignant type, so it’s important to monitor it regularly. I have come across quite a few with MGUS, but not suffering from any nerve-disease, and even if I’ve known and corresponded with Norb for about a year now, I really don’t know if he’s having MGUS, so perhaps you can have one without the other.

      I have both, and was treated for MGUS with Rituxan. Only afterwards, through this Forum, I found out that I had antiMag IgM PDN. On the blood screening the hospital saw that I had way too much IgM, but they didn’t know, or at least they didn’t tell me, that it was this that caused my nerve-pain and motoric problems.

      Two years ago I was given Rituxan IV – unfortunately I don’t know how much, but it was calculated on the basis of my weight and height – four times 28 days apart. After each IV I started taking 70mg Fludarabine (another chemo) a day for five days. Except for a few mild side effects during the treatment period itself, I have been getting better slowly but surely ever since. Especially my motoric skills have improved, but the pain, even if it varies, also has become far more managable.

      My blood is checked every 6 months, primarily the IgM level, and it has been well inside the normal range every time. I think if there had been a dangerous B-cell depletion, the IgM level would have pointed to the fact by being below normal.

      On the basis of Norb’s musing about where the B-cells become “corrupted”, I would think, in my case, the chemo drugs cilled the bad B-cells off, and the new ones coming from the bone-marrow are healthy. If they are “healthy” because they have stopped multiplying like mad, or if they also have stopped producing the anti-mag type IgM, I don’t know – the important thing is that there is not so much IgM in my blood anymore that it is able to do my myelin any harm, whether it has the antiMAG “flaw” or not. I don’t know what will happen if I get a bad infection, though, if my nerve-problems then will increase again for the duration of the infection, or if will start the B-cells to run wild indefinitely again. I don’t know if I would want to find out.:eek:

      In my case it seems that I won’t have any problems concerning long term use of Rituxan, because the way it was administered the first time, and together with Fludarabine, did the trick. (KNOCK ON WOOD!) But as long as I’m monitored twice a year I feel quite safe that any change will be picked up while still in its infant stage.

      I really wonder why your antibodies still flurish if you’ve had a number of treatments already – I’m not familiar with the Pestronk Protocol even if I know about Dr. Pestronk.

      Would be interesting to hear more about your case.

      All the best from

    • Anonymous
      March 19, 2007 at 11:49 pm

      Norb I am also an advocate of the pro-generator thesis. this has been advanced by some of Docs going after arthritis with rituxan and I think it is plausible for antimag.
      the oncology folks here subscribe to that as well.(hammer and nail issue)
      i fear I don’t have total faith but it may come to that down the road.

      Ive taken a recent look into transcription factors and some of the MS work with seems out there but they are getting impressive results in the lab with mice. needless to say we are eating allot Indian food lately.

      Allaug- from what I understand I have anti-mag Img with high titres with no underlying issues. My oncologist wants to do your protocol with the combination therapy which speaks to wiping out the pro-generator.
      my understanding is riuxan is serum based as to Norbs point but the Fludarbine goes after all B-cells. its seems like your folks know what their doing. I am very encouraged to hear your story and I thank you

    • Anonymous
      March 20, 2007 at 4:30 pm

      [B]Allaug[/B], according to an immunofixation test done a year ago, I have evidence of a small monoclonal gammopathy, which according to my neuro is probably MGUS. The lab report says “possible IgM lambda band. Possible bands are located at the cathode end.” If I understand this correctly, this is the MGUS she is referring to. Of course,this is in addition to the high titre of antiMAG IgM.

      She ordered a new immunofixation last week. I have not seen the test results yet.

      [B]Michael[/B], you lost me. Some of the terms you are using are new to me. Could you explain “pro-generator thesis” and “hammer and nail issue.” Also, where did you find the turmeric info and what does it have to do with transcription? (I do know what transcription is 😀 )

    • Anonymous
      March 20, 2007 at 11:00 pm

      Norb I apologize ….kinda buried in medical journals trying to decipher there literature. pro generator is a reference to the mother B-cell that is producing antibodies eating my myelin. this can result in many clones all producing the same “bad antigen”

      I think we have a common understanding here in that we can reduce titres but until we get the first one its going to return and fast. Igm is produced at very fast rates.
      hammer and nails is an off-handed reference to the “limited tool kit” our neurologists have for anti-mag

      I am still pouring thru cross references with the turmeric studies.
      1) some work from Texas with mice has shown high efficacy with turmeric in MS/ this gets referenced alot
      2) U of Arizona has been doing arthritis work with turmeric and shown some pretty interesting results

      the approach here is novel in that it eliminates the “signal” ie transcription factors that elicit the immune response as opposed to eliminating the system that responds

      MS and arthritis are auto immune and share many similarities
      I have found some references that I don’t totally understand that refer to similar proteins (factors that both MS and anti-mag share)

      could be a novel approach and i understand major things are happen re turmeric and a numbers of universities
      needless to say using rituxan is like using a sledge hammer and targeting the transcription factor seems more elegant.

      of course my doc’s think Iam a very standard deviations out there.

      as a starting point do a google on turmeric and MS and then arthritis. it pretty exciting.
      I’d be interested in your opinion

    • Anonymous
      March 22, 2007 at 6:08 pm

      [COLOR=”Red”]I considered this topic important enough to warrant a seperate thread. Hope it’s OK with you.[/COLOR]
      pass the Indian curry and don’t forget the yellow mustard 😀

      The scientific research on turmeric (made from curcumae longae rhizoma) is indeed amazing. When I read some of it to Carol yesterday morning, guess what she served for lunch. Some yellow looking concoction she came up with. What makes me wonder is why not more about it is known since the research has been going on for 2 decades. I guess alternative medicine is still not very accepted in this country and probably given a bad name by the drug industry. Of course, the other side of this is that the effects of herbal preparations including spices often are rather mild and take time and patience – and, in addition, there is the endless discussion about lack of standardization and quality control. But we don’t need to worry about Indian curry 😀 There also is a website giving a long list of recipes with turmeric as ingredient.

      20 years ago, I used to grow about 50 medicinal plants back in Minnesota more as a hobby than for actual use and read every book I could get my hands on. Yesterday I pulled out my “bible”, the phytotherapy textbook (R.F.Weiss, M.D., here published as “Herbal Medicine”) and a phytotherapy standards manual (Volker Fintelmann, M.D. et al – still quoted here today) used in Germany in medical school. Unfortunately, both are almost 20 years old and the only use for turmeric known at the time was for indigestion. Side effects with extended use and overdosis may be stomach irritation and heartburn since it stimulates production of stomach acid, contraindication: gall stones and gall passage occlusion. All this still holds true today.

      Of course, the active ingredient in tumeric only effects the inflammation triggered by our auto-immune antibodies and not the creation of the aberrant B-cells. Also, we don’t know if the genes and transcription factors involved with inflammation are the same for MS and CIDP nor do we know why some people come down with MS and others with CIDP.

      Regardless, I think it is worth trying turmeric, I will.

      Thanks for posting it.

      BTW, I did a search. You are the first to mention it on the “new” gbsfi forum. There was no mention on the British or the German ones.

new member with questions

    • Anonymous
      July 14, 2006 at 6:01 pm

      My name is Crystal and my husband was recently diagnosed with GBS. The neurologist just keeps loading him up with pain pills and does nothing to treat him. He sees him once a week and all the Dr. says is to keep resting. We are so frustrated because he is not taking any kind of action. Does anyone know what we should do? I can’t stand to see him in pain any longer!:( If anyone has any advice I would be sooo greatful!


    • Anonymous
      July 14, 2006 at 6:38 pm

      Dear Crystal:

      Welcome to our family.

      If your husband was treated with IVIG or plasmapherises then there isn’t just a whole lot that can be done at this time. If your husband isn’t getting worse, then the IVIG or the Plasmapherises did its job.

      At some point your husband should be given physical therapy to bring back the muscles that have atrophied. If the nerves aren’t working, there isn’t a whole lot of point in exercising the muscles beyond range of motion exercises.

      At this point, maybe your husband would be better off with physiatrist (a doctor who specializes in nerves, muscles, and recovery) instead of a neurologist.

      Crystal, I understand your frustration, but there isn’t a doctor in the world who can make your husband’s nerves heal. Only time and the body’s natural healing processes can male the nerves any better. The good news is that almost everyone gets better. The healing process is going to take months or years, not days and weeks. Be patient and the healing will happen sure enough.

      Please know that you and your husband are not alone.


    • Anonymous
      July 14, 2006 at 9:00 pm


      I’m so glad you found the forum, I think you will find a little more peace of mind speaking to others who have been through the same thing. When was your hubby diagnosed with GBS and how severe is it at the moment?

    • Anonymous
      July 14, 2006 at 10:14 pm

      hi crystal & welcome,

      ditto lee. time is the best gbs healer. also the best pain med for a gbsers is neurontin. many of us take neurontin, a non-narcotic, for peripheral neurological pain. neurontin is specific, it can work even when ordinary pain killers do not, even the opiates like methadone. great success w many. v safe. start at 300 mg 3X/day [900 total] & increase by 300 every other day till pain stops. taking it 6X/day instead of 3X/day gets more bang for the buck. 3600 is theoretical max/day that your body can absorb. 5600 is practical absorbtion max/day. the only reason for the slo build up is it may make you sleepy till your body gets used to it. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      July 14, 2006 at 10:17 pm

      Of course, if your husband did NOT get IVIG or PP, that should be the absolute first thing you need to demand from your doc.

      I regret daily that I did not harass my doctor more to figure out what I had.
      If we would have gotten the IVIG in me sooner, things probably would have been much less painful for me.


    • Anonymous
      July 14, 2006 at 10:24 pm

      I have been vary lucky to this point. I have been able to take the pain. I have a “mild” case of GBS. And I am bull headed,blonde, and polish, LOL. I am tryen acupuncher at this point, and my 1st try was great. This place is a wealth of information. hang in there.

    • Anonymous
      July 14, 2006 at 10:59 pm


      The first thing I would do is get a new Neurologist, if he hasn’t treated him with IVIG or PP at all then it sounds like he may not be familiar with treating GBS/CIDP. For the pain ask about Neurontin or Lyrica which help the most with nerve pain. Keep pushing for treatment for him and get a new Neuro if needed. Keep asking lots of questions if you need to, take care.


    • Anonymous
      July 14, 2006 at 11:27 pm

      Hello Crystal,
      I have to agree with what Jerimy said. If your husband has not been treated with IVIG infusions or PP plasma pheresis, I think you should get another neurologist. Find one who is familiar with GBS/CIDP. If you would tell us where you are from, we may have a member in your area and we’ll try to give you a recommendation of a good neurologist.

    • Anonymous
      July 15, 2006 at 4:48 pm

      You all have helped me more than you know! Jonathan was not treated with pp or ivig. I will certainly demand treatment. I heard though that it was only supposed to be done in the first two weeks of diagnosis. Regaurdless I will push for it. I will also request Neurontin. Thank you Gene! My husband is not paralized at this time, but there are days when he can’t get up much. To make things worse, he is a huge guy! He is 6’8 290lbs. We live in Ventura county, California if anyone knows of a good Dr. we are near Las Angeles, and Santa barbara. I am very glad I came to this site and I look forward to speaking with you all soon. Thank you for your support!


    • Anonymous
      July 15, 2006 at 4:49 pm

      You all have helped me more than you know! Jonathan was not treated with pp or ivig. I will certainly demand treatment. I heard though that it was only supposed to be done in the first two weeks of diagnosis. Regaurdless I will push for it. I will also request Neurontin. Thank you Gene! My husband is not paralized at this time, but there are days when he can’t get up much. To make things worse, he is a huge guy! He is 6’8 290lbs. We live in Ventura county, California if anyone knows of a good Dr. we are near Las Angeles, and Santa barbara. I am very glad I came to this site and I look forward to speaking with you all soon. Thank you for your support!


    • Anonymous
      July 16, 2006 at 7:24 am


      if you want a 2nd opinion, etc…

      UCLA: Dr. Michael Graves is highly regarded and is a member of the advisory board of the GBSFI. I found him to be caring and knowledgable.

      Los Angles area doc with gbs experience is Dr Emilio Cruz. He was really good… his # (818) 842-8177

      physical threpist Joyce Campbell, Ph.D., P.T. she is a proferssor in the Dept. of physical therapy Cal. State University, Long Beach . She runs 2 floors of GBS patients.

      Santa Cruz – Dr. Michael Gansauer Santa Cruz Medical Clinic 831-476-8900

      Huntington Beach – Dr. George Perrine 19066 Magnolia Street, Huntington Beach, California (CA)

      take care. be well.
      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      July 16, 2006 at 10:38 am

      Everyone here knows alot more then I do about treatment, I was 14 when I was diagnosed with GBS and at the time the only treatment was PP never did anything for the pain. But it sound like you need to stomp your foot down and demand that this DOC pull his head out of his you know what and start treating your hubby right. I did not have the advantage of the IVIG it was not around when I was diagnosed so I ended up with alot of neurve damage in my left side of my body. I don’t want to see anyone go through that. I think it is time for a new Doc. I would go to one that has dealt with GBS before and knows what he is doing.

      Hang in there it does get better over time.