new Rx for nerve repair

    • Anonymous
      October 5, 2007 at 11:01 am

      new Rx for nerve repair

      recombinant human erythropoietin [EPO] has been shown to help heal nerve damage. not to be used for the long term.
      ‘the communicator fall 2007 pg. 6’

      to me the word should go out.
      i don’t know, if after 8 years, if it will help me, but i intend to ask my doc for an Rx of it.

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

    • Anonymous
      October 5, 2007 at 1:52 pm


      Is this the newsletter that comes from the Foundation? I have only received one copy since June. Now I am going to be wondering the whole weekend. I am at the point I will try anything right now. That would be an injection I am assuming. Alright, I guess I will need to wait to hear back from you! Thanks!

    • Anonymous
      October 5, 2007 at 9:15 pm


      yes, it is the gbsfi newsletter. your copy will arrive v soon. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      October 5, 2007 at 10:51 pm


      My issue arrived today, my husbands hasnt arrived yet. I’m not sure how they mail them, but I would imagine it would be in batches. As Gene said, yours should arrive within the next few days.

    • Anonymous
      October 7, 2007 at 10:19 am

      I would like to receive all the news or information pertaining to GBS from the website. How can I get it?

      Please advise


    • Anonymous
      October 7, 2007 at 5:10 pm

      If you go to the website, or call the Foundation – number on the gbsfi homepage – request to be added to their mailing list, and they will send you quarterly newsletters as well as a few bookelts regarding GBS or CIDP, whichever one you are interested in.

    • Anonymous
      October 8, 2007 at 5:00 pm

      Let me know if it works….. I’ll try anything xoxoxoxox Roxie

    • Anonymous
      October 8, 2007 at 9:34 pm

      Still waiting for my copy. Am excited to read this.

    • Anonymous
      October 8, 2007 at 10:10 pm

      I am just going to give my opinion, but from reading the article (yes I got my copy today thanks!), it looks like this would be given in the early stages of the disease. My interpretation, for what it’s worth, is to have PP or IVIG at the onset and then EPO during this beginning recovery stage. I might be making all that up too:) but that’s my interpretation. I have read about EPO for MS though with the same premise, that once the myelin is damaged the EPO enhanced the remyelination process resulting in fewer residual effects.

      I am still going to ask the neurologist and see if it is something that is worth a try. In the MS study, it was a modified version so you didn’t have to worry about blood clots.

    • Anonymous
      October 9, 2007 at 11:37 am

      Gab I had the same impression that this treatment (once it becomes a treatment) would be something that is given on the heals of stopping the attack, very soon after receiving IVIG or PE. They don’t even have trials set up yet but it’s worth asking about. I’m going to persue this with my Dr. as well.

    • Anonymous
      October 9, 2007 at 2:33 pm

      How are you doing Kathleen? I know you emailed me earlier this year and I remember you were quite active before this as well. I’m, needless to say, a little frustrated AGAIN. I just don’t think things are going to get much better. I did some activities this weekend, and almost didn’t have the strength to finish walking. It was a walk on a trail, which in Florida means it is flat, no hills. But uneven so I had to watch every step. I barely made it back and that was it for the ENTIRE day. I feel like I have to scale down every single thing I want to do to a disabled person’s status. I ask before I go if there are stairs, how far to the door, etc. So I’m curious since you are a year ahead of me how things are? Gabrielle

    • October 15, 2007 at 2:43 pm

      Im going for this med if I can get it here in Iceland,
      thanks for make us awear of this med Gene

    • Anonymous
      October 15, 2007 at 10:18 pm


      Unfortunately it isnt a treatment/medication yet. They quote animal experiments and studies that have been done and seem to be a success so far.

      [SIZE=1]By: Kazim A.Sheikh, MD Department of Neurology, Johns Hopkins Medical Institutions[/SIZE]

      [SIZE=1][I](The following article is a progress report from one of the Foundations’s grantees at the completion of his one-year grant cycle)[/I]

      GBS is an autoimmune disease that affects peripheral nerves. Antibodies and T cells (a type of while bolld cell) directed against the nerves are involved in nerve injury. Two therapies, IVIg and PE have proven beneficial for the treatment of GBS. The principle underlying these therapies is the modulation or neutralization of autoimmune responses causing nerve injury will limit neural damage and allow natural repair processes to restore nerve structure and function. A significant proportion of patients with GBS are left with residual neurological deficits and incomplete recovery despite the availability of IVIg and PE. Poor or incomplete recovery after GBS is partly due to failure of nerve regeneration and reconnection with target organs such as muscles and skin. We have experimental evidence indicating that autoimmune antibodies found in some patients with GBS inhibit repair of injured nerves in a preclinical animal model (1).

      Treatments that enhance nerve repair in the recovery period of GBS can decrease the incidence of residual neurological deficits and incomplete recovery. Recombinant human erythropoietin (EPO) is an FDA-approved drug used for the treatment of certain varieties of anemia. EPO is one of the earliest recombinant proteins in clinical use as a drug originally identified for its role in erythropoiesis. This drug also has remarkable tissue-protective activity in preclinical models of neuronal, retinal, cardiac and renal ischemic injury. Notably, EPO has been shown to be neuroprotective in animal models of strok, spinal cord, and nerve injury. EPO readily penetrates the blood-brain barrier and a recent phase II study showed that peripherally administered EPO is beneficial in stroke patients. Extensive past experiences with dosing and side effects make it a valuable candiate to develop further as a neuroprotective therapy in GBS. Therefore, we examined the efficacy of EPO in overcoming autoimmune antibody-medicated inhibition of nerve repair in preclinical cell culture and animal models. Our studies indicate that EPO can promote nerve repair in sensory and motor neuron cultures and in an animal model of nerve injury produced with antibodies that are relevant to patients with GBS. Notably, the animal studies also indicate that EPO improves nerve repair. The resluts of these GBS/CIDP Foundation sponsored studies were recently presented at the Peripheral Nerve Society in Utah (2). Now, we are in the process of examining the effects of different doeses of EPO in these antibody-mediated experimental models.

      Besides antibodies, T-cells are also involved in the pathogenesis of GBS. Experimental allergic neuritis (EAN) is a prottypic T-cell-mediated model of GBS. We now want to extend neuroprotective studies with EPO to EAN. GBS Foundation has funded this project htis year. Demonstration of EPO-mediated neuroprotection in both antibody- and T cell-mediated preclinical models of immune nerve injury would be extremely relevant to GBS, because both humoral and cellular autoimmunity is invoked in the pathogenesis GBS. Overall, these preclinical studies would provide a rationale for a clinical trial with EPO in patients with GBS. Since GBS is a monophasic disease, EPO can be administered for a limited/short period of time, thus decreasing the probablility of projected thrombolism with chronic use of EPO.
      ([SIZE=1][I]1) Lehmann HC, Lopez PHH, Zhang G, Ngyeuen T, Zhang JY, Kieseier BC et al. Passive immunization with anti-ganglioside antibodies directly inhibits axon regeneration in an animal model. J Neurosci 2007: 27(1):27-34

      (2) Zhang G, Lehmann HC, Sheikh KA. Anti-GD1a antibody-mediated inhibition or neurite outgrowth and its reversal with erythropoietin. JPNS 2007; 12 (Suppl):96

    • Anonymous
      October 17, 2007 at 11:19 pm

      Hey Gene, It’s Byron. Remember me? I’ve been busy of late. Now working fulltime as a security guard at a youth camp in FL.
      Let me know what you find out about the new RX. How are you doing? Still problems with the feet & legs? My arms/hands still only about 80% but I manage.

    • Anonymous
      October 18, 2007 at 8:06 am

      hi byron,

      of course i remember you. been a while. i am doing rather well, some minor feet probs & the usual fatigue limiting problem, but still Get Better Slowly. will try to got the Rx in a few months & will post results. good to hear from you. take care. be well.

      gene gbs 8-99
      in numbers there is strength