While the forum was down Part 1

March 6, 2008 at 12:15 pm

[COLOR=”Navy”]While the forum was down, Andrew and I continued our discussion and exchange of experiences via e-mail. Here are some excerpts that might be of interest, not necessarily in the order in which they were sent. The text in blue is mine, and the one in black is Andrews[/COLOR]

Hi Norb

I did some searching on the internet for the natural flora and discovered a wonderful site at [url]http://www.textbookofbacteriology.net/[/url]
It even contains an excellent description of the immune system. From this, I noted that the author talks about plasma cells having a life of only about a week. It would be interesting to know how one might differentiate between the 1-week plasma cells and the long life plasma cells. They must have different functions. Perhaps the long life plasma cells are indeed memory cells, whereas the 1-week plasma cells are innate cells. ????

The part about the natural flora makes for fascinating reading. I had no idea that we are all filled with such a cocktail of bacteria, starting in the mouth and going all the way through.

It seems that there is a balance in the natural flora which can be affected by things like antibiotics for one. Hence, I figure that this balance may have been changed as a result of the Rituxan or the after effects of the Rituxan on the immune system.

I can’t help but think about how much it would mean to me to be able to sit down across from a doctor who really really knows all about IgM MGUS and the treatment with Rituxan. Certainly the neurologist does not know, because it involves so much more than just nerves. The hematologist does not know because it involves the immune system. Would this be the type of thing one could learn about from a trip to Chicago for the GBS-CIDP conference? Have you been to one of them?

Best regards

[COLOR=”Navy”]Hi Andrew,

I ran into a problem with my infected toe. After six days of antibiotics it was still not back to normal. Yesterday I decided to go back to see my primary doc. She referred me to a podiatrist. Last year I lost a toe nail which was slowly coming back but severely ingrown. He said because of reduced blood flow bacteria found a niche under it which antibiotics could not reach easily. He pulled off the nail. I hope he’s right. (he was)[/COLOR]

I went for a long walk today. Felt good. I believe some strength is returning, but the sensory neuropathy is unchanged. Also, I had a brain wave last night. Ever since the Rituxan in December I have had minor stomach cramps, rumblings, and gas. It ocurred to me at about 4 am this morning that every night I have yogurt before I go to bed and this is made with a bacteria (albeit “good” bacteria). And we know that the level of B-cells is reduced due to the Rituxan, so whatever part the immune system plays in digestion of bacteria bearing foods is probably reduced. Same might be said for milk and cheese. So today I started on a mini diet eliminating the dairy products (except milk on my cereal – a must). Actually, my stomach feels better already. Have you heard anything about this? If you think it is of use to others, I will copy and paste into a posting on the forum under the usual “CIDP – Rituxan Treatment?” thread.

Take care

[COLOR=”Navy”]Hi Andrew

No, I have not heard anything about what affect Rituxan might have on the intestinal flora. I’m not sure that our immune system has any influence since these bacteria probably only populate the matter inside the intestines and not the tissue itself. Antibodies on the mucous membranes prevent micro-organisms from entering.

Take care

Hi Andrew

[QUOTE]I can’t help but think about how much it would mean to me to be able to sit down across from a >
doctor who really really knows all about IgM MGUS and the treatment with Rituxan……..[/QUOTE]

[COLOR=”Navy”]Yes, I know. It’s been very frustrating for me to get good answers. My own oncologist knows everything about cancers and Rituxan but he tells me to ask my neurologist when it comes to anti-MAG IgM neuropathy. As far as he’s concerned the possibility that Rituxan might help with the neuropathy is only secondary to treating my lymphoma. My neurologist actually never set down with me and talked about the immunological part of it. The best answers I ever got were from an immunologist. She participated in the forum for a while probably for professional reasons. This was before the forum was attacked and all the data was lost. Allaug was able to retrieve two of her answers to me. I reposted them but I’m going to include them here in case you missed it.

Tonight I watched a show on the Discovery Health Channel about one of our forum members who came down with GBS. It was pretty interesting but it did not go into a lot of detail about the pathology. Taking off the commercials it probably was only about 20 minutes, too short to get into it. A lot of it was just drama, interviews etc

No, I have not been to the GBS/CIDP conference. Heard good reports.

Take care

Hi Andrew

The short-lived plasma cells are the ones in circulation while long-lived ones stay in the bone marrow. If I remember correctly, the author of the article I mailed to you earlier suspects that these are some kind of memory cells which stay around in addition to memory B cells.
[/COLOR] >
[QUOTE]Whereas the 1-week plasma cells are innate cells. ???? [/QUOTE]

[COLOR=”Navy”]They are part of adaptive and not innate immunity. More about that later.

I read somewhere some time ago that there are more micro organisms in and on our body than our cells. Also, the immune system is more active in the intestinal area than any other place. I still believe that this doesn’t go any farther than the intestinal walls. Within the material inside the intestines antibodies would simply not be able to perform their function. Inside the walls they protect our body from intruders.[/COLOR]

[QUOTE]Have you had any noticeable change in your condition since the Rituxan? I was thinking that my strength was improving, but today my fingers feel more numb than usual. It might just be from allowing them to get too cold while outdoors during this sub-zero temperature.[/QUOTE]

[COLOR=”Navy”]I have not noticed any improvements yet. However, Carol seems to think that my hands are getting better. I don’t feel it. Andrew, I would expect that you see improvements much faster than me because your symptoms seem to be less advanced than mine. I also read something to that effect about other patients. To give you a more detailed picture of my symptoms here is a link to a caregiver’s guide Carol just wrote]a few days ago. She will be going to Denver next week for a few days and every other week after that to help out our daughter and her two children. She hired a neighbor girl to come over every day to check on me. The guide is for her.


See pages 5 and 6

Take care

Hi Norbert
I had a bit of a cold this week, so it is hard to tell whether my neuropathy is any better or worse at the moment.
I am frustrated with my Neurologist. In answer to the questions I prepared, the neurologist’s staff clerk (the word nurse would be too complimentary to him) called me today to say that they do not want to test for IgM or antimag because the two tests would tell us nothing. “The only true test of the Rituxan is whether or not the symptoms get better”. He says that if I do not improve, then the test for IgM and antimag would have been useless and unnecessary.
Have you ever heard such crap? I now wonder whether anyone in the neurology department knows what Rituxan does, other than to reduce neuropathy.
So I won’t be able to compare notes with you two on blood test results following the Rituxan.
Maybe I can order them and pay myself. I’ll check out that possibility.

Take care

[COLOR=”Navy”]Hi Andrew

Of course, they are correct in saying that the final proof will be in improvements and not in test results of the anti-MAG IgM. On the other hand, we would like to have some indication that there might be a chance for improvements. The anti-MAG IgM tests would be such an indication. Seems a lot easier here in the US to get those tests some might consider unnecessary.

Back to the innate immunity:

1. Innate or inborn immunity is also called natural resistance. It is our first line of defense. It is nonspecific, has no memory, and is not self-limiting (does not stop). It cannot tell the difference between different antigens. It has two parts: external and internal. The external part consists of the skin, body secretions and mucous membranes preventing the penetration of pathogens into host tissues. For example: the skin (better if oily) prevents penetration of most pathogens. Once pathogens enter the body, internal immunity takes over. It consists of physiological barriers, phagocytosis, and inflammation. Cells involved are monocytes, eosinophils and phagocytes.
2. Acquired immunity is also called antibody mediated immunity. It is our second line of defense. It develops during a host’s life time and is based partly on the host’s experiences with antigens. It is specific, has memory, can distinguish self from non-self, and is self-limiting (except unfortunately not completely in our case). Cells involved are the lymphocites, that is the B cells and T cells. Macrophages, the complement system and inflammation also play an important role.

Take care,