But as usual we have more questions than answers. Hubby ran another high fever a couple of weeks ago -- this one got to 103.1 only
The ER was able to lower the fever and we went home. Hubby was actually offered a transfer to UVA or University of Richmond in Virginia but we declined those options.
At 4 a.m. we got a call back from the hospital -- hubby's blood cultures were positive for a gram negative bacteria. They suggested he be admitted to the hospital. Hubby was asleep and had no fever so we decided to wait until the next day to see our PCP and let him decide what to do -- he was not on call that night and practices in a different hospital in a different state.
Anyway I let hubby sleep in until 10 the next morning. By the time he was admitted to the hospital in the afternoon his WBC had gone down from 14.5 in the ER to 7.3
The bacteria was identified as serratia marcescens -- still do not know if this is from a PICC line or acquired during his prior hospital admission 2 weeks previously. The PICC line was replaced in between the 2 high fevers and his WBC was normal with the higher first fever. But the old line was not cultured and the new line was put in the same arm!!!!!!!!!!!
Fevers did continue while in the hospital for the next 6 days and after being discharged. The highest one in the hospital was 102.7 even after getting tylenol. Once the 10 days of antibiotics prescribed by the PCP was up (Ceftazidime 3 times daily in the hospital and oral Cipro 2 times daily at home) the WBC was still 14.6 and low grade fevers were still happening every other day.
I switched hubby to oral Factive which we had left over and it has stopped his fevers and he actually feels like he is recovering. The local hospital did test for sensitivity and supposedly the 2 meds prescribed by the PCP were very good choices for serratia bacteria. Factive was not on the list of meds tested against the bacteria.
Will retest bloodwork on Monday or Tuesday which will be 4 or 5 days after starting the factive. If the WBC is still elevated then we will have to try again to have the current PICC line either retested or pulled -- PCP so far is unwilling to pull the line.
Thankfully I have found a new LLMD for hubby in North Carolina and we have an appointment on Wednesday. This doc will not prescribe IV antibiotics because of the Dr J situation, but for now we are more concerned about finding someone who has enough time and is willing to take on a challenging patient.
The Clongen bloodslide from April 7, 2011 also showed a coccobacilli -- may or may not be the serratia bacteria. This was the day after the PICC was replaced.
The part of this that seems strange to me is that all hubby's fevers have been late afternoon or at night.
The low grade fevers originally started with IV flagyl a month ago which we originally thought was a herx.
Hubby went back on oral malarone, oral quinine (qualaquin) and IV clindamycin while in the hospital. Next Friday will be day 21 on his 4th cycle of babesia meds. Not sure what the plan is going forward.
Bea Seibert
[ 04-24-2011, 08:44 PM: Message edited by: seibertneurolyme ]
Posted by beths (Member # 18864) on :
Boy, you have been thru the ringer-prayers for you.
I hope this LLMD has the "magic bullet"
Posted by Rumigirl (Member # 15091) on :
Oh, Bea, don't you think you should have your honorary LLMD by now?!! Sorry, I don't mean to be flip at all. It's just that you, and I think myself too to a different degree, have had to be the dr so much. Later maybe I will have some ideas.
Posted by METALLlC BLUE (Member # 6628) on :
That infection is typical of PICC lines.
Posted by Razzle (Member # 30398) on :
Metallic,
I've had a PICC since 7/08 and have yet to have an infection in my line. So not every PICC gets this type of infection.
Seibertneurolyme,
Sorry for all that your DH has gone through. I hope this new LLMD is able to do great things for him.
I will say that I was under the impression that afternoon fevers could be viral, but don't want to add more confusion and questions to what's going on. Since I don't have Babs, have never had a PICC line infection despite having had a PICC since 7/08 (knock on wood), and rarely ever get fevers, I don't have any personal experience with this.
Take care,
Posted by seibertneurolyme (Member # 6416) on :
Razzle,
Hubby has actually had a PICC line in one arm or the other for over 7 years -- so maybe his good luck just ran out. But so far his PCP has been unwilling to help us figure out if the line is the issue.
The fevers are a new symptom and so is an elevated WBC -- has not been elevated in the entire 10 plus years he has been sick.
Dr K at Clongen lab had a different theory -- he thought that since the babs treatment is so aggressive and actually seems to be killing off red blood cells that there are other unknown pathogens which are just now surfacing as a result.
There is definite evidence of die off of red blood cells during the highest fevers -- RBC goes lower as do hemoglobin and hematocrit. Also myoglobin and LDH both go up and platelets go down. There is a definite trend to the bloodwork over the last month.
It is really hard to tell if some of the shaking chills and fevers are from babesia rather than the serratia bacteria. And then there is always the possibility that bartonella is still part of the picture. As most of the fevers seemed to come after his 3rd daily dose of IV clindamycin we initially thought they were related to babesia.
Hubby has had to start taking nausea meds pretty much around the clock. The hospital stupidly scheduled 2 of his IV's during meals and by the end of his stay he was vomiting food at most meals. That is one of the reasons I put him on the factive -- in the past levaquin worked miracles on his G.I. symptoms from bartonella or BLO.
Actually serattia bacteria is in the same family as klebsiella which frequently causes G.I. bacterial overgrowth. Hubby had a problem with that bacteria back in 2002 the first time he did IV Rocephin.
I didn't go into all the details about how the cultures were not done correctly at various points in time, which is why there is no clear cut answer as to when or how he got the bacteremia -- the PCP explained in detail to us that hubby's presentation did not fit the definition of sepsis. We are thankful for that anyway as he was sick enough as it was.
Actually the only time the cultures were done correctly (drawn from both the PICC line and the other arm) was the first high fever that got to 105.8 (rectal). All cultures were negative that time and his WBC was normal. He had no additional fevers during the 3 days in the hospital and not for 6 more days. We iniitally thought the fevers coming back were because the babesia meds had not worked to get rid of that infection.
Bea Seibert
Posted by philly78 (Member # 31069) on :
Wouldn't the increased WBC be a good thing? In that it means his immune system is actually doing what it is supposed to do?
Seems like you have your hands full. Thoughts and prayers for you guys. Good luck with the new LLMD.
Posted by seibertneurolyme (Member # 6416) on :
philly78,
The lab hubby uses lists a normal WBC as 4.5 -- 11.0 Normally a WBC that is high is an indication of an accute bacterial infection. It could also be high if someone has ongoing problems with inflammation causing pain.
Yes, the immune system needs to respond and recognize infections. But if it remains too active for too long there is always the danger that it will create autoimmune issues.
The important thing to watch is not so much the exact numbers but more the trend. Hubby's WBC was between 4.0 and 4.5 for a couple of years and as soon as he started factive last year it increased to 4.5 -- 5.0 and stayed there. This was an indication to us and his LLMD that the bartonella or BLO had been suppressing his immune system. His CD 57 also increased by 15 or 20 points although it is still too low. And his RBC increased slightly at the same time.
Bea Seibert
Posted by METALLlC BLUE (Member # 6628) on :
quote:Originally posted by Razzle: [QB] Metallic,
I've had a PICC since 7/08 and have yet to have an infection in my line. So not every PICC gets this type of infection.
I'm well aware of that.
Posted by METALLlC BLUE (Member # 6628) on :
Bea: As you know, if a typical infection common of PICC lines ends up in the blood stream, that's just extremely uncommon. It's wise to investigate the PICC line itself if the person's health continues to decline. Especially fevers above 103-104. The tip of the PICC line will often have colonies growing in cases of such infection. (I'm explaining this for the benefit of others, not you Bea since I know you know this.)
Just have the hospital pull the PICC line if you decide to pursue that issue (such as if he gets the same pattern of symptoms again (Shaking, Chills, seizures, high fevers) which persist and don't respond to medications.
I don't recommend medications to suppress fever, but I'm saying this because others do.
Posted by map1131 (Member # 2022) on :
Bea, I hope this new LLMD is everything you need to get hubby onto better days. I remember not to long ago he was doing better after going after bart and getting GI under control.
No telling what type bacteria(s)are hanging out in our local hospitals these days.
Pam
Posted by Dawn in VA (Member # 9693) on :
Oh crap, Bea. I'm sorry, I did not realize the severity of things right now.
>>I didn't go into all the details about how the cultures were not done correctly at various points in time, which is why there is no clear cut answer as to when or how he got the bacteremia<<
GRUMBLE, GRUMBLE!
Prayers a-coming.
Posted by Karen Mc (Member # 23354) on :
Bea, sorry to hear what you are now going through. Hope the new Dr in NC works out..I will be praying for ya'll.
Posted by Shahbah (Member # 28735) on :
high WBC is indocative of infection but antibiotics also raise the WBC... worst case scenario it could also indicate leukemia... which I really hope NOT!!!
Posted by philly78 (Member # 31069) on :
quote:Originally posted by seibertneurolyme: philly78,
The lab hubby uses lists a normal WBC as 4.5 -- 11.0 Normally a WBC that is high is an indication of an accute bacterial infection. It could also be high if someone has ongoing problems with inflammation causing pain.
Yes, the immune system needs to respond and recognize infections. But if it remains too active for too long there is always the danger that it will create autoimmune issues.
The important thing to watch is not so much the exact numbers but more the trend. Hubby's WBC was between 4.0 and 4.5 for a couple of years and as soon as he started factive last year it increased to 4.5 -- 5.0 and stayed there. This was an indication to us and his LLMD that the bartonella or BLO had been suppressing his immune system. His CD 57 also increased by 15 or 20 points although it is still too low. And his RBC increased slightly at the same time.
Bea Seibert
Interesting about the bartonella. MY WBC has been chronically low for years...even lower than your hubby. I typically run between 2.8 and 3.5. My diff is always fine and I rarely, if ever get sick.
I was admitted to the hospital for 6 days last summer for something unrelated to lyme. It was the first time I had been sick in years...since I was a kid really. I'm now 33. My WBC at one point was 2. Upon discharge, it only went up to 2.9.
At my first LLMD appt., he was thinking I may have bart. I'll find out the results next week. With your comments about the WBC and bart, it does seem likely that is the case with me.
Posted by nefferdun (Member # 20157) on :
I am sorry to hear he is doing badly and hope the new doctor can help. I am no expert, that is for sure, but from what I have read (in Dr. S' book), seriously ill babesia patients (as in dying) can be given a total blood transfusion.
I wish your doctor would consider this. If he could get rid of a lot of the infection by replacing the red blood cells, he might be better able to control what is left. Just a thought.
I hope the new doctor can help. You are both struggling so hard for so long. If there are no really competent LLMD's in NC, maybe a trip up north - -
Posted by seibertneurolyme (Member # 6416) on :
Hubby's WBC did decrease to 8.9 on his bloodwork yesterday so that is encouraging that the Factive seems to be working. But on the other hand he has been running low grade fevers up to around 100.0 the last couple of nights. I just don't know of any way to prove whether or not the fever is from the babesia or whatever bloodborne parasite he has.
His RBC and hematocrit and hemoglobin seem to be stuck slightly low. Liver enzymes were previously slightly elevated and have returned to normal.
Overall he seems to be slowly recovering, but there may still be a small amount of hemolysis.
I am sure we will have a discussion with the new LLMD as to whether he should or should not supplement with iron at this time while treating babesia. Hubby wants his energy back, but iron would obviously feed any blood borne parasite. He has been using lactoferrin so maybe if he stays on that supplement the doc will agree to a small dose of an iron supplement.
Bea Seibert
Posted by tickled1 (Member # 14257) on :
Hi Bea,
What's the latest on hubby? I hope he is doing much better!
Posted by seibertneurolyme (Member # 6416) on :
Hospital visit number 3 in the last 6 weeks was more of the same. Hubby had a fever of 103.3 At least this time we got the PICC pulled and replaced in the other arm. And to add more confusion all cultures were negative. They did them correctly this time and even cultured the PICC that was removed.
This was a different hospital and they were very conservative -- kept hubby for 6 days and had him on the same 4 IV antibiotics as the first hospitalization. Unfortunately he had several bad seizure-like episodes while there which included loss of bowel and bladder control -- but the docs did not do any neuro exams or tests. They did do an echocardiogram which was basically normal -- wanted to rule out endocarditis.
Hubby stopped the quinine on the day he was admitted -- it was day 21 of round 4. So he did not run any fevers in the hospital or since he has been home yet -- got out on Thursday.
Now the PCP is probably mad because we did not go to the hospital where he practices and hubby's new LLMD may have been scared off. We had a very lengthy 2 day appointment with her on Wednesday and Thursday and the fever and hospitalization was on Friday. Hopefully today we will find out whether or not the docs are still on board or not.
Steve is supposed to start round 5 of quinine and clindamycin tomorrow. I restarted him on low dose Topamax and so far that seems to be helping plus getting back into a more normal routine with supplements and meds.
I am getting tired of playing doctor and hubby is just getting plain mad about the whole situation.
He had me increase his malarone from 3 pills daily to 6 pills daily. He has some sort of rash on his lower back, thighs and calves probably from that med change, but on the other hand he says his legs feel stronger now after the rash. We are hoping it was some sort of die-off.
We will get thru this somehow. Thanks for thinking of us. I checked off that hubby would like visits from clergy while in the hospital and he had 5 or 6 different pastors stop in to see him -- a different one every day. That kept him busy when I had to run out and do errands. I think it did do him good to talk.
One of his nurses had been bitten by a tick and had a rash but no other symptoms. Her doc gave her 2 weeks of doxy. We made sure she knew to ask for at least a couple of more weeks of meds to be safe and gave her the name of our new LLMD if she needs it in the future.
Bea Seibert
Posted by tickled1 (Member # 14257) on :
Oh Bea! I'm so sorry. I was hoping for better news. Something has got to give!!! Hang in there.
Posted by momindeep (Member # 7618) on :
Dang. I will pray for you both...I will pray hard.
Posted by aiden424 (Member # 7633) on :
quote:Originally posted by Shahbah: high WBC is indocative of infection but antibiotics also raise the WBC... worst case scenario it could also indicate leukemia... which I really hope NOT!!!
I've had high wbc off and on since I've been sick. Usually over 15000. I was checked for leukemia but was negative. I have always run fevers too since I got sick. Anywhere from 100 to 103 but usually around 100 to 101.
I've had this off and on since I first got sick in 1986. It's been better since I started antibiotics 5 years a go but it comes back within 3 to 4 weeks everytime I stop antibiotics.
Posted by BoxerMom (Member # 25251) on :
Oh Bea! I can hear your frustration.
You could sit for medical board exams at this point. I don't blame you for being tired of "playing doctor."
I hope Steve is indeed herxing and finds some symptom relief. At www.Lymefriends.org there is a thread going on rashes. It includes photos.
If you're up for some Lyme humor, we have a thread going in General Support.
![[Mad]](mad.gif)