August 14, 2011


we are home

during our stay in the ER, parker's liver enzymes returned to normal and his platelets came way up and are back in normal range. PTL! we really don't know what exactly it is that caused his bizarre rash and all of his other weird symptoms. parker says he has lost count of how many times he's heard the word "weird". initially ER doc thought drug toxicity or DHS was the cause (as was the dx by the clinic doc) however his rash kept changing and moving around his body WHILE we were in the ER. it was WEIRD. so possibly it is just some weird viral infection that is wreaking so much havoc. at any rate, he still has the rash, is feverish and is in considerable pain but he was able to come home. they gave him pain meds, so he is currently a tad ummm, high.

i am exhausted but so profoundly grateful for all the support and prayers. thank you! it brings tears to my eyes. and i am really, really thankful that we could come home. the ER doc thought the worst of it was behind us. i sure hope so.

will update more tomorrow.

1 comment:

Seibertneurolyme said...

I am procrastinating while working on a detailed summary of hubby's last 10 years of medical treatment for a new LLMD. I randomly clicked on your blog from a list of a couple of hundred lyme blogs I have been compiling. Must have been fate or divine intervention that led me to this post.

Anyway, there is one other obvious explanation for the rash and the low platelets and the fever and the elevated liver enzymes. Has he ever been tested for Rocky Mountain Spotted Fever or other rickettsia species? The rash on the hands and feet definitely makes that a high probability.

Hubby had never even run a fever in the first 10 years of his tickborne illness. But back in March I ended up taking him to the ER when his fever spiked to 105.8 rectally. It went from 99.5 to the high number in about 45 minutes.

Since then he has had 3 more fevers over 102 and been in the hospital all 4 times. He did not get the rash until the day he was released from the hospital the 4th time -- 2 months after the 1st hospitalization. His bloodwork was not drawn until about a month later and showed an elevated IgM for RMSF.

Hubby's rash was only on his forearms and from his ankles to his thighs. The skin ended up peeling off on his hands and feet plus everywhere the rash was.

2 1/2 months later he is still running daily fevers of 99.5 up to 100.5 most days.

Don't know what the IV med was, but what initially started hubby's fevers 2 weeks before the first fever spike was IV flagyl. What we have come to discover is that very aggressive babesia treatment which causes a die-off of red blood cells brings out whatever hidden infection is intracellular.

Hubby seems to have finally gotten rid of the serratia marcescens bacteremia which further complicated the picture for him.

I would also get routine blood cultures for Graham as it is possible that there is some bacteria in the PICC line. Hubby had never had problems in the 7 years he had had a PICC line until the fevers started this spring.

Your mentioning the blisters in his mouth also may be related to RMSF. Hubby has had a sore tongue since the rash showed up. And I am pretty sure I read somewhere in my research that RMSF could cause tongue/mouth symptoms.

Good luck. Hope you can get the RMSF bloodwork and some blood cultures done just to at least rule out the other couple of possibilities.

Will try to follow your blog for awhile.

I can be contacted at the email below if I can help.

Seibertneurolyme (at)

Bea Seibert