May 2, 2008 at 1:45 pm

To those who have replied to my daughter Beth. Unfortunately she is not well informed. We moved from Ohio to Tn and I know it is hard not knowing what is going on but we do not talk to her often as she has 3 young ones and very busy right now with them plus her church.She cares but it is not the same as being here. I have not had a minute to myself until recently. I also think that it was probably the the white but I am not sure now since I do not know the difference. It was .6 at one time.Blood pressure 50 over 80. They did test the blood for sepsis and it took 3-5 days to get the results before they could determine which antibiotic he needed. It took from 3:00am to noon to get him a room with waiting and testing being done.Unfortunatly this was one of those nights I stayed up to copy more info from this sight to show my husband so I had no sleep but thank god he went to bed early. He does not get on computer much any more but relies on me. It can be educational and also heart wrenching at times.

He had alot of problems with bowels, the biopsy area, gerd, sleeping problems,moodiness just to mention a few. It has been hard on both of him and I.We had company in between 2 hospital visit which was probably surprising to some but we needed to laugh again as we were both very depressed.

In Tennessee they do not call in to your doctor , they have what you call hospitalists on staff who determine what is wrong and who they do call in. The hospitalists told me that Tennessee was not the place to have cidp. Very few doctors even neurologist even know much about cidp. This doctor called in a infectious desease doctor who was wonderful. Spent alot of time explaining things to us. He knew I did not like our neurologist but my husband does.. but he said there were only two neurologists in this area who were specialists in this area and ours was one of them. He supposedly is a genius so they say. he spend very little time with us and has only once even asked if we had any questions. I think he had l7 patients on this floor so maybe that is why. I felt my hands were tied . I have to go with what we have and husband is the patient not me and he does not want a second opinion.

This is hard to take when I care so much and cannot do anything about it.
Now for the results please bare with me: He was septic.
The antibiotic was for l4 days so he went home (after 5 days)with it in a bag tied to his waste and into an iv. After one week of being home with this iv we went back in for 5 days of ivig. His walking is better and he is down to 10 mg of prednisonefrom 60. He will have another treatment every 6 weeks. His next one May l3 and l4. If he needs steroids hopefully they will give it but being on them long term is not good. He hates it. And hard to get off of.

The imuran is what caused this immune system to go so low so I do not understand how those of you that have had it along with steroids can take it so long and not get sepsis like my husband did. I have read the posts and unbelievable. Our doc believes this is the first line of treatment and 80% of his patients are on this with good results. DO NOT UNDERSTAND THIS. We went to Disney and prior to this we were both sick and family doc gave antibiotics then intestinal flu for both of us after disney. Next day- BOOM The doctor asked us if we knew what caused it-dah

He has fallen about 9 times but only two times just recently as he has gotten stronger, however doc thinks it is from looking up as my husband told him. There is a area in the back of the neck that when you look up it (artery or vein -blood supply) it shuts off blood supply and causes you to get shaky in the legs and he falls. Another symptom is headaches at night. He is to get mri of neck and head. I had him go to a eye specialist who knows about gbs and other autoamune diseases (did not know about cidp but best doc around) and he thought it was from ears . We shall see.

The nerve biopsy is healing with the help of a wound doctor. Takes a long time. Now Medicare not ok’d the doctors nurse says they will not ok it until it is done and then they will write a gruesome letter once denied. I disagree with this but who am I. Cost is up high about 15,000 a treatment Doc said so every 6 weeks can really add up. Pray for medicare coverage.

I think I have said enough but hopefully it may help others . Not the same for everyone but I do hope it may help
Next step is extraction of wisdom teeth possibly- god help us.