All about Guillain-Barré syndrome: Milt's story!

To start at the real beginning, I should tell you that we feel heavy metal poisoning has been a large part of Milton's auto-immune process.

He was raised in an apple orchard where arsenic of lead and DDT were sprayed. In l990, he had a silver amalgam filling in a tooth replaced with another silver amalgam filling (which can be 50% mercury). Two days later his face swelled up and got bright red like a chemical burn. The dentist said it had nothing to do with the filling.

In the next 2 years, Milton had transient weakness... legs or shoulders would feel very weak but be fine the next day. Also in the last 6 months of l992 he was very tired. But because of stesses in family and work, he did not associate it with a physical problem.

On 6 Dec, l992, his legs were very 'tired' again. He could hardly pull himself up stairs. On Dec 8th, he had a raging headache. I believe he saw a naturopath that day and his blood pressure was very high. On Dec 10th, he drove to Vancouver, Canada, to see his Chiropractor (Milton is a Chiropractor and feels very strongly that his specific type of chiropractic has been very beneficial in his recovery). By the time he drove 2 hours back home, his lower back was in extreme pain. He was sick in the bathroom then laid on the floor for quite awhile. I was afraid he was having a heart attack maybe. He felt a little better in an hour or so but by morning could not go to work.

Sat. Dec 12, l992, he again could not go to the office, so I went and cancelled the patients. I called our neighbor, who is a nurse, to come take Milt's blood pressure. It was 300+ /160! We headed to ER. Our hospital is just over a mile from our house. The ER doctor thought his blood pressure was problem and worked all afternoon to try and get it down with very little success. Milt was admitted and the next day was having trouble with his legs. Dr. suggested GBS but did not know of blood pressure connection.

Milt was moved by ambulance from the island we live on to Everett, WA. Two doctors were assigned... neurologist and internist still thinking two things were happening. Many tests over next 3 days were inconclusive. He seemed stabilized but in the night on Wed Dec 16, became almost totally paralyzed. He could turn his head back and forth on the pillow but that was it. No pushing the call button for help. Thank goodness he could call out to a passing nurse and she paid close attention all the rest of the night. They got him a call button that laid on the pillow and he could roll his head on to for help.

I spent every day with him but went to friends to rest at night. The decision that is was GBS came as a last resort and so did the decision to move him to University of WA Medical Center (UWMC) where plasmapheresis could be done. By the time he reached UWMC on Fri and they got a port installed and tests done, it was Saturday evening the l9th, Dec before first pheresis. But the neurologist there had told us on arrival that Milt had GBS, what we could expect, how long it would take to recover (6-8 months)and the blood pressure was connected. The center that controlled BP had been demylenated, causing uncontrolled BP. What a relief those words were!
By the next day he could again swallow (had not eaten since Fri because of choking). Vision started to clear and he just avoided having to be intubated to breath. He had 5 pheresis in a 10 day time period.

On Dec 28, l992 (our 25th wedding anniversary) I was able to take him home although he could not transfer from wheel chair to bed alone. But neighbors had borrowed hospital bed, wheel chair, walker, cane, commode, toilet riser...everything they could think of that we might need. A ramp had also been built to our front door.

The doctor felt Milt understood his body and knew enough about health to allow him to be in charge of his own care. During the next months he continued to have chiropractic care. He also had told the neurologist that he planned to search for answers in any and every avenue open to him. This included massage, accupuncture, nutrition and much more.

On Jan 6, l993 his blood pressure was moving up again. By the 9th his arms were weaker again followed by the legs on the l0th. Back we went to the UWMC in relapse #1.. a different neurologist was on duty and he wanted to try IVIG.. so Milt had 5 in 5 days and home we came again. He was able to walk with assistance and even drove some by the end of January, 93.

On Jan 31st the blood pressure was up again (was on meds to keep it down but never seemed to help when a relapse came). On Feb 1, back for relapse #2 for overnite IVIG--3700ml. On the 5th Feb went to see dermatologist as his hands had blistered. On Feb 13th managed to go to a restuarant that required steps. Next day blood pressure was up and 15th arms were weaker again. 16th he was at UWMC overnight for 1800 ml IVIG. Arms were still weak rest of that week. On Feb 21, he was back at UW for IVIG daily for 4 days, l00 ml a day I believe.

On March 5, he had an outpatient IVIG and on March 11 he was admitted as they wanted to install a Hickman catheter and do plasmapheresis again. Had 5.. one every other day... Back home on March 20th. I believe at this time a decision was made that it was not acute. They could not stop doing what got him back up... so he started outpatient plasmap on a once a week basis. On about April 10th he started meds for chronic relapsing GB: 60 mg prednisone and 50mg imuran. Also ended back as inpatient for 3 phereis in 5 days. On April 13th imuran upped to 100mg.

At this point I found out I had a mass the size of a grapefruit behind my uterus and needed surgery... Milt's brother came to stay with him and all was benign after the hysterectomy. On April 26, Milt was weaker again and back to inpatient. Prednisone upped to 100 mg which made a big change. Still on blood pressure meds. Many family and friends were helping, taking Milt the 2 hours to UWMC for outpatient pheresis while I recovered from surgery. He was having plasmapheresis every 3-4 days moving slowly out until May 27th.....getting weaker again. Our son had to pick him up out of wheelchair and put him in the van for return to hospital. After 5 pheresis he was able to come back home...walking with assistance.

I should note here that every month we seemed to hit whatever holiday was occuring and head to the hospital. Started with Christmas, Valentines, St Patricks, Easter, and Memorial Day wkend. I believe Memorial weekend was relapse #9 and was decided to keep pheresis close together until he got lots better.

During June and July, he started slowly cutting the prednisone back. The insurance would not pay for outpatient, so he had to go down night before and be admitted then could come home after pheresis next day. Mid July he started to see a few patients a day at work. Thankfully we had found a young chiropractor who had been working the office for us since first of year. At the end of July the insurance ok'd doing outpatient again.

SLOWLY Milt was getting stronger. He was working part days and was able to go fishing the end of August. Sometimes he felt real good after a pheresis and sometimes it took a day or so to bounce back. Mid Sept he had a down for a few days... catheter was clogged and not working real good... maybe prednisone was too low so upped it a little bit.

On Oct 15 he flew to Chicago to attend a conference. He took a cane and used a wheelchair in the airport. Did very well considering. By the time he got back home was time for pheresis... took long time.... hosp called next day to say catheter was infected. Back to U for antibiotic in catheter... Did a pheresis but still staf infection so had to do IV's at home all week. The catheter was infected again by Dec 4 and was removed. He now was doing the pheresis with needles in arms. Laying still for 2-3 hours as outpatient.
My calendar for l993 says he had 57 plasmapheresis in that year. We could of done without the whole year I think :):)

In l994, Milton continued to have plasmapheris as needed, depending on tingling in the arms and general weakness. He had 21 pheresis that year. He also realized that the filling from l990 may have had some bearing on all this. We found a dentist that was trained in how to remove the old fillings and replace with a composite that was compatible with Milts body. He had all of his fillings changed in a 6 wk period I believe and it did make a difference--spacing the trips to U out to every 3 wks.

In Feb of l995, the veins in the arms started to be very scarred. It was decided to go back to IVIG as it was easier on the blood and the veins used could be any small one instead of the large ones. He had 2 pheresis that year and 23 IVIG's.

In l996, the calendar shows he had 35 IVIG's. They seem to have been done in pairs...2 in one week--a couple of days apart-- then he would go 3 wks until next two. It appears he was still on BP meds and imuran this year.

In l997, we found he could do the IVIG's in our local hospital... no 2 hour trip to UWMC. After 4 IVIG's we found the price was double. We could not afford to use the insurance up in that manner. When there is a lifetime cap of 1million we had to be aware of cost since we have no idea how many years he will need this. So back to the U which Milt does not mind. He had been driving himself down for quite some time. He was still doing 2 every 3 wks. In Sept of 97, he had a kinked bowel causing a blockage. He had 34 IVIG's that year.

In l998, he had troubles in Feb. An abcessed tooth and bowel problems. Naturopath said he had salmonella poisoning end of March. By the end of April, he was having surgery for Crohn's. He had had part of bowel removed in l970. Wondering what that has to do with the whole autoimmune problems. In March, he also started doing only one IVIG every 3 wks. He is taking imuran every other day as he cuts it back. His main symptoms are a 'jangling' in the hands and arms as the IVIG wears off toward the end of the third week. Sometimes takes a day or so to get back to 'normal'. He had l9 IVIG's that year.

I can not seem to find my calendars for 1999 and 2000, (what a relief, haha) but things continued about the same. In 2001, he had 15 IVIG's. He had been off the imuran for a couple of years, but he and the neurologist decided to start again to see if it would space the trips out. Sometimes he has gone 4-5 weeks before feeling he needs a treatment but then quite often he needs one again in 2 wks. Seems he gets too far down to bounce back. Probably because of Milton's education, the neurologist has allowed him to make the decision on when he needs to go for outpatient treatment. We simply call the neurology coordinator and tell her he needs to come tomorrow and what time. She gets the orders signed and sends them to the correct dept and lets us know it is all set.

I apologize if this has gotten too long. When you live with a chronic disease, it gets long! I hope I have answered some of the questions you ask me to talk about.

No one has ever said anything about having to discontinue the IVIG's. We are aware it is a blood product and that it carries some risk.
There are things Milton can not do and probably never will again. Like run down the street or jump or be quick on his feet. But he works full time and is on the go a lot. He seems to have more energy than me. We have been very blessed when I read about some who are in a lot of pain. Milt's was a motor problem and not sensory one except for a 'jab' in the foot occasionally as a nerve fires out of control. He feels very strongly that he would be in a motorized wheelchair if not for chiropractic (and also the help of accupuncture, massage, nutrition, etc.).

Best of luck in translating this and thanks for your interest.

Sincerely,
Patty/Milt CIDP/92 WA

I am glad this information can be helpful to others. Just knowing someone has had something similar can relieve the stress of this syndrome/dreaded disease.

Milton is so much better than he was 18 months ago. He had gone to outpatient for IVIg every 3 wks for almost 9 years and it seemed it would just always be that way. But last week when he went it had been 11 wks. Two and 1/2 years ago he started back on a small dose of Imuran which is an immune suppresant and was told it might lengthen out the time between eventually but may take a while.

Then 18 months ago he found a supplement in a health food store called Heavy Metal Klenz. Since we felt heavy metals were a part of his start, he decided to start taking this. After the first bottle he was going 5-6 wks between treatments. So he got another bottle and then I think a 3rd over a years time. He went 9 wks two times this year and then the 11 wks. So he only had 6 treatments this year. We are glad for this result even though we are not sure what had the most impact on the results. He has also started taking 5 mg of lithium a day as it helps nerves. That was this fall and it did go 11 wks.

We have always continued to seek for answers outside the medical model. The MD/neurologist had no answers and said go ahead and look for help other places. Milt was very 'lucky' maybe to never have a reaction to the IVIg and would rebound back to 'normal' within 24 hours.

I say 'normal' because there are several fairly permanent things that never got better after the paralysis. He has no reflexes in his lower body, he can not run or jump, he has always got tingling in the fingertips, and has developed tremors in the thumbs in recent months. But he works full time and few people realize he is not fully recovered.

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