Getting better

March 15, 2011 at 2:59 pm

I was able to bow hunt In 2010, last few years i couldnt pull back my bow, I’m down to 1 ivig treatment per month and down to 80grams per infussion. I ‘m also able to jog, but still cant run. I havnt taken any pills since jan 2010.
I Pray everday for all of us…Kyle

Getting better

July 19, 2008 at 9:48 am

My understanding is that, for GBS, we all heal when our bodies stop making the bad crossreacting antibodies–antibodies that our body was trying to make react to the Camphylobacter gut infection or to whatever infection/vaccination/immune insult that precipitated this. These antibodies cross react with myelin on nerves and cause the GBS. When the infection is over, the body is not supposed to continue making antibodies against it and so there is no more also to cross-react and thus no more inflammation. In principle, what is happening is that our bodies are healing themselves and “treatment” is often not to stop the disease process (inflammation), but to stop the manifestations or nerves that do not work because of DAMAGE from the inflammation. I think this is true of some people with mild cases, but others build up enough damage that leads to continuing problems–not from the inflammatory disease per se, but because nerves are really slow to heal from damage and branch off to different places. Also, I think some people may have enough similarities in the myelin to the original “insult” that they continue to make antibodies now to this as long as myelin is being exposed by ongoing damage (then often becoming CIDPers). Also nerves do not heal perfectly–exactly as they were before and the nervous system is so complex that changes in wiring do not work well.

I work with children with ITP (immune thrombocytopenia purpura) where antibodies attack the platelets (the cell parts of blood that stop a person from bleeding). With ITP, there is often a sudden onset of low platelets (because they get destroyed when antibody binds to them). Doctors tell the families that the people have to heal themself–stop making the bad antibody and treatment (immunoglobulin, etc) only alters the manifestations (low platelet count because of the destruction of the platelets). Do you understand–the treating immunoglobulin alters the destruction and not so much the presence of the bad antibodies. Many people think of mild GBS in the same way and I read lots of medical literature saying not to treat mild GBS (when people are still able to walk) because people think about it in the same way as other autoimmune diseases of rapid onset. In reality, there are probably significant differences. Platelets and their forming cells (megakaryocytes) pretty easily recover from a problem, but nerves are really slow and imprecise in recovery. This means that recovered nerves do not act the same way as undamaged nerves. Why lots of people “ought” to be treated in GBS is probably not so much to stop production of bad antibodies (since one time doses of high dose immunoglobulin may not be effective and plasmapheresis gets rid of the bad antibodies, but does not REDUCE production of auto-antibodies), but rather to reduce the damage caused from the process that causes problems at the time of acute inflammation and later when the nerves do not really work like the system was designed over years and decades to work.

This is a complex concept and I probably have not said it very well, but there is a difference in stopping the inflammation and altering the damage from it. To get over the inflammatory disease, the ongoing production of the cause of the inflammation (the bad antibodies) have to stop being made. Immediate “treatment” in GBS is about limiting damage present and future resulting from the inflammatory process. I think this complexity and its interaction confuse most doctors and many immunologists. I also think that when people think about it better as two parts, maybe there will someday be a better way to stop damage in GBS and to limit ongoing damage in CIDP.

I will try to say this once again differently. There are two problems in GBS. the fact that antibodies are made and cross-react to myelin; so the antibodies and inflammation. The second is the damage to the nerves from this inflammation that alters them (causes less effecient conduction of nerve impulses or causes the body to try to compensate for weakness in new and less effective ways or results in repair that is different than the system is used to having (like a patch to a circuit with different resistances so the current flows differently and the whole process no longer works as well as it was originally designed to do–and our design is completely awesome).

The added complexity is that enough immunoglobulin (given to stop damage) also will have some impact on production (not plasmapheresis which really only affects damage) and also that inflammation causes secondard damage to the nerve that can cause further inflammation and makes a somewhat different self perpetuating cycle of damage in CIDP. To best help in GBS, it seems to me with my background in immunology research distant as it may be, is that we have to aggressively stop the damage and the cycle of inflammation (to prevent conversion to CIDP if possible). I think this is why doctors are beginning to question the “do not treat if it is mild” scenerio.

WithHope for a cure of these diseases and a better understanding.

Getting better

November 8, 2007 at 2:05 pm

Hi everyone,

Long time no see.

I am getting better and getting acknowledged as having hypothyroidism or rather Hashimoto’s.

For 8 months I have been on T4 replacement called Eltroxin, with a slow increase and I am now at 100 mcg a day.

It turned out that all my unspecific symptoms did indeed relate to Hashimoto’s. They have mostly gone away now. When meds are optimal, I have no symptoms whatsoever, except when I exhaust myself. Neuropathies are gone, walking difficulties gone, memory is back, etc. I am back, and I love being myself again.

I am back to work full time, and though I do get very tired, I am very happy to have my life back.

As you may know Hashimoto’s is an autoimmune disease, and I still feel connected to you all in this forum.

A couple of days ago I came by, and I almost wept seeing your names in here. You meant so much to me at a time when I was going through hell to get a diagnose. You were so understanding and caring, and you gave me courage to continue and not give up. THANK YOU for being there and still being here ๐Ÿ™‚

Getting Better

July 27, 2007 at 11:04 pm

I feel much stronger this summer as the second anniversary approaches.
I have about the same residuals as you have. I have continued physical therapy at home by doing streteches, walking outside, riding excercise bike, walking, walking and walking. I walk nine holes, park at the end of the lot and do some excercises on lunch break. The stamina and flexibility are getting much better.
Keep on keepin on.

getting better

April 3, 2007 at 11:35 am

My name is Dawn (otherwise known as Ausra) I am Lithuanian, so we are kind of neighbors. Well, I am American born but my father was from Lithuania and I know how to speak the language. Your positive attitude is very good! My son is ten years old and was diagnosed in October 2006 with the chronic (comes back) form of gbs known as cidp. He, like you, is very positive. He considers himself lucky compared to the many others who suffer to a greater degree. I should learn from both you and my son to be so positive and gracious. I know your recovery will go well and I will pray for you. Dawn (Ausra):) ๐Ÿ™‚

Getting Better!

February 4, 2007 at 5:53 pm

Hello All,

Well, after a long long and I must say, artic cold weekend, my son is on the mend. He is doing better and his temp has been only in the 100’s off and on. I would like to [FONT=”Verdana”][SIZE=”2″][COLOR=”Blue”]thank everyone [/COLOR][/SIZE][/FONT]here who have helped me and said prayers for him.

I am glad he did not have the flu shot. GBS would have not been this short of a duration.
Got to go he is telling me he is hungry finally!

Thanks again,

Getting Better

June 5, 2006 at 2:19 pm


You have asked the question that every GBS patients want answered. It is also a question that can’t be answered with any relevance to one person or another. As you have read in the responses you have received so far, there is no standard recovery from GBS.

Follow the great advice you have received. Get rest, exercise, get mad at GBS, and be determined to get over it! Your attitude can effect the outcome! Keep your “cup half full” rather than “half empty”.


Bob Doehrman
Regional Liaison
Mid-Atlantic Region