Topic: IV claforan, low wbc, meningitis...please help!!
SunRa
Frequent Contributor (1K+ posts)
Member # 3559
posted
hard to be on comp so bear w/me...
4th week IV Claforan...(havent tolerated drug too well whole time but dr felt it was better for bart/lyme so i've been sticking w/it)
new sx, very sick..spent night in hospital
yesterday woke w/ SEVERE headache and eye pain...couldnt move eyes w/o unbearable pain..
severe light sensitivity
swollen/firm/painful lymph on right side (side of PICC line)
severe spinal/low back pain
neck pain
fever 100.4 (normal temp 97)
dizzy/disoriented/unstable/unsteady
(headaches different than normal ones and I never get this kind of eye pain or low back pain..spine inflamed..came on so suddenly and severe)
sent to hospital yesterday...tons of blood tests (blood cultures wont be back for a bit)
WBC 2.3 (ref range 4.1 - 10)
4 days ago WBC was 6.5
ER dr adamant about me needing immediate spinal tap due to likely meningitis. I didnt want it..last one was a total nightmare...took me 2 months to recover
called llmd....didnt feel I needed LP unless temp went up to 103...felt Claforan was getting into brain/spinal cord/herx (before knowing about low wbc). ER dr said she has seen people die of meningitis w/o fever and insisted i needed it
I was finally released after refusing treatment (LP)
so sick (different than usual) off Claforan, getting repeat wbc test today, waiting to hear back from llmd (may be right but doesnt have much experience w/this...not making me feel too confident)
if not better soon I have to go back to hospital reallyreallyreally can't go through LP again
serum sickness? sepsis? meningitis? herx?
please help!(even just w/ good thoughts/prayer) what would you do? any similar experiences?
Posts: 1563 | From MA | Registered: Jan 2003
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SunRa
Frequent Contributor (1K+ posts)
Member # 3559
posted
oh, and started lymplus transfer factor 4 days ago...lymph started swelling on day 2. no other new meds
Posts: 1563 | From MA | Registered: Jan 2003
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I have been on IV Claforan since March. Honestly, I am ready to try something else because this has done absolutely nothing for me. Actually, this last two weeks I have felt like absolute crap.
Either way, I had the problem with the low WBC for a couple of weeks. I began taking Echinacea and it boosted it back up to the normal 4.5 range. It had gotten as low as 2.1. I am also ready to switch docs as I am not to happy with mine as we speak.
Posts: 157 | From connecticut | Registered: Feb 2007
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SunRa
Frequent Contributor (1K+ posts)
Member # 3559
posted
also...i've been at this a long time....thses arent my usual herx symptoms. also never been on Claforan though..or treated bart much
Posts: 1563 | From MA | Registered: Jan 2003
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I tried to pm and respond, but your mailbox in full.
Posts: 157 | From connecticut | Registered: Feb 2007
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I am sorry treatment is making you feel so awful. I know you already went through so much just to get the picc in. I hope your dr can get you some answers and relief. Sending healing thoughts and hugs.
posted
Hi SunRa, My daughters llmd told her to stay away from crowds when her wbc was low like yours. Please protect yourself from catching anything else.
What is your dr. doing to support your wbc?
I really hope you are feeling better. Let us know how you are.
Posts: 677 | From Virginia | Registered: Sep 2002
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Hi SunRa, I truly hope you're feeling better.
I tried IV claforan in 2004 and it nearly killed me. I had low white blood count, neutropenic fever. It made me so, so sick.
I was on it for about 3 weeks. Shortly after the last infusion I felt like all the bones in my body were breaking. My husband called the ambulance because I was screaming in agony. I was admitted for 4 days in isolation.
It took me two months to recover. I'm hoping that you, too, will recover soon now that you're no longer taking claforan.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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SunRa
Frequent Contributor (1K+ posts)
Member # 3559
posted
thanks so much for your responses. wow, lymelady, that's awful. was it a serum sickness reaction?
I've been off the Claforan for over a week now. I'm still feeling horrible, but thankfully the fevers have stopped and my wbc have gone back up and other labs are looking better too.
still unsure exactly what was/is going on, but in addition to the neutropenia and possibly a herx, dr suspects a serum sickness-like reaction. other dr says aseptic meningitis. whatever it is, it's awful and taking me a long time to recover from
we're switching to Rocephin. I had the wbc drop on that as well but I didnt have as many side effects as the Claforan. ..knocking on wood..
thanks again for the input and good wishes
Posts: 1563 | From MA | Registered: Jan 2003
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reallyreallyreally can't go through LP again
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