timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hi All~
I've been on IV rocephin since June 9th. Did some Ketek for a good part of that, and in mid October went to 300 mg Doxy.
I made significant improvement on those drugs, and I attribute moving back into the land of the living, and great improvements in my brain fog, and balance issues to the IV rocephin.
When I switched LLMDs, my new one wanted monthly blood cultures. Well, the first one that we did showed a fungal growth...apparently yeast.
My GI has been FINE. (I was on lots of probiotics and nystatin.) My blood, however, was not fine, since it cultured out the yeast.
SO...picc line was pulled, (since it can harbor the yeast), and more cultures were done. I don't have the results of those yet.
I'm off ALL antibiotics for now and on Diflucan. When the dust settles, my doctor will re-evaluate and go from there.
Anyone ever had this happen to them?
It is a good idea, for those on IV treatment to get monthly blood cultures done. I had NO IDEA that anything was amiss. But, apparently something was!
I kinda miss my picc line....but it will be nice to take a swim!
Merry Christmas....Happy Holidays to all.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Timaca.
I'm sorry you've lost your PICC.
Mine got pulled for a coupla reasons:
1. Blue Cross said "You're ALL BETTER NOW!!!!" 2. My liver numbers said, "You'd better be all better now because we've had ENOUGH."
I can't take Diflucan. Liver goes into similar revolt quickly.
However, my LLMD had me try a new probiotic called "Theralac." He heard lots of good stuff at the Lyme Conference. It's nothin' short of miraculous. Like you, I thought I had things under control but realize now how much I did NOT.
One thing about the PICC I did not miss was "The Giant Plastic Arm." (sleeve you put on for showering.) Felt like such a treat to totally shower and get all the way wet!!!
Hope you reaped lotsa good out of your PICC time. Hit those orals. And try the Theralac. It's turned my brown tongue pink again, banished every yeast woe I have. One pill a day. I feel it's also done wonders for my fatigue level too, which I attributed completely to Lyme but might have had yeast overtones...
Best to you,
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Mine was pulled also for basically the same reasons. My protocal now is invision silver and silverwings MSP silver. I also include oil of oregano which works great against yeast. I also on occasion take probiotics but sense i have no yeast signs i forget to take it at times. The progress is slow but it is progress. best of luck!
Posts: 731 | From Humble,TX | Registered: Feb 2005
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posted
In my opinion, I think that was wise. I read an autopsy report of a young woman in Iowa being treated for Lyme. Cause of death in report was big ol pulmonary embolism from candida.
Systemic candida can be very serious.
-------------------- **Eat Chocolate** Posts: 942 | From USA | Registered: Mar 2005
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posted
What's a monthly blood culture? Like, what exactly does the doctor/lab call it on the order form?
Posts: 204 | Registered: Jan 2005
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posted
sorry to hear that.Since ive been on the Iv I have been following your progress and just like you the first two months really didnt help but the last two weeks it is starting to kick in.I also am curios what the culture is.I get the routine blood and liver work but did you get something extra.Please keep me updated on if you relapse off rocephin,I am nervous about losing this improvement(especially the the brain stuff).Hope you stay well.
Posts: 308 | From new bedford,Ma. | Registered: Dec 2004
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posted
A blood culture is a sample of blood taken and then put in petrie dishes, etc...it's left in the lab for a few days to see if any type of baceria or fungus grows. It's taken just like any other blood test.
The doctor's order will say "blood cultures". Most of the time 2 samples are taken from different sites like one from the picc and one from the other arm, or one from each arm.
They usually take 2 samples to see if both readings come out the same. If not, one could have gotten contaminated with staph or something from out skin.
I'm a nurse and have drawn many of these myself. Hope this helps.
Posts: 340 | From Ohio | Registered: Oct 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Here's an update:
Culture was done on blood from the picc when it was pulled. One was also done on the tip of the picc itself(the part closest to the heart); and a culture was done on blood taken from the other arm. These were all done on Tuesday, the 20th, when the picc was pulled.
Culture from blood taken from picc was positive for fungus, not yeast. (It was also not yeast the week before, but was fungus).
The picc itself did not grow anything. And so far, the blood from the other arm is negative for growth.
SO...it appears from this limited data that the hub of the picc (what was outside my body) is what most likely had a fungal growth going on. It appears that I do not have a systemic fungal infection.
BUT, the doctor on call (and he has been an ANGEL talking to me twice today, and is also planning on calling back again) is requiring more blood from me.
SO, I went back to the hospital lab today and had a blood draw in one arm, and 15 minutes later, a blood draw in the other arm. They will culture that. If at any time, these blood draws grow anything, I will be in the hospital, and they will be running tests galore. I will go back tomorrow for the same blood draws. They are looking for fungus in the blood that can come and go....that is the reason for different blood draws.
My LLMD and this doctor on call both agree that (by the book) I should have a trans-esophageal echocardiogram to make sure the heart valves are OK. However, when I talked with the cardiologist today, he thought that was a bit overkill. And the doctor on call, could not get a hlold of him to voice his opinion. SO, if I am to get one of those done soon, it would require a trip to a larger city....and that, we decided, won't happen unless I get chest pain, sweats or fevers in the next day or two (indicative of a systemic infection). Then I will be sent by helicopter to the next larger town that does these. I guess a helicopter ride would make up for the fact that I'm feeling like ****
I am so grateful to this on call doctor who is taking a HUGE interest in my case....even willing to call my LLMD in NY, and call other doctors around the country for their opinion on my case. WHAT AN ANGEL!!!
He will probably switch my drug from Diflucan to something more broad spectrum. He is checking more on that before calling me back tonight.
Now, to answer some questions....A monthly blood culture is ordered as that "Monthly blood culture from picc" The blood is to be drawn from the picc line, not from a peripheral vein. This helps to find infections that are in the line (like mine was). If it had been drawn from a peripheral vein, then this infection might not have been caught.
Chainsawjoseph~ My LLMD also ordered a urine analysis weekly. I don't see that you mentioned that. My weekly labs were urine analysis, complete metabolic profile, liver profile and monthly blood culture from picc line.
I will post more on Monday or Tuesday when I know the results of the most recent blood draws.
Merry Christmas and Happy Holidays to all.
Your picc-less friend....Timaca Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
You are right,I havent had any urine analysis or cultures.That makes me a little nervous but right now I just want to stay on this stuff.Arent you worried about not getting right on orals.Did you ever take anything for cysts or plan too?Does your doc believe cysts need to be adressed,seems half do and half dont.
Posts: 308 | From new bedford,Ma. | Registered: Dec 2004
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hi Chainsawjoseph~
My doctor had me on doxycycline (300 mg daily) along with the 2 gms IV rocephin daily. He was not giving me a cystbuster. I am a fairly new patient of his, however, and that might have been added in the future. I don't know.
Of course, I wonder if I will maintain my progress on orals or IM alone. But, it's not something that I worry about. Worry doesn't help. Right now I'm on NO antibiotics, just voriconazole, a broad spectrum anti-fungal drug (which is also very expensive....one week is $552! )
I do know myself well enough, to know if I start to backslide significantly, I will alert the doctor to that fact. I'm sure he will be careful to watch me too.
I had two blood draws yesterday, and two today. They will culture those, and I'll know the results in a few days.
I would certainly ask your doctor to do monthly blood cultures from blood drawn out of your picc line. And a urine analysis to check for kidney function.
Good luck. Glad you are seeing improvements!
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I should add that I do not at all feel like I have a systemic fungal infection going on. The doctors told me to watch for fever, chills, rash or chest pain. I've had none of that...except chest pain in the past, which is now gone.
Merry Christmas to all....Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Sorry to hear about the PICC. Good that your doc was on top of it. I will be interested in hearing your next plan. Hopefully the IV tx helped you turn the corner.
I am still waiting for the turn.
T. you have a really good attitude.
Posts: 830 | From Colorado | Registered: Mar 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Thanks, Aliyalex for the comment on my having a good attitude. That helped me today. I am trying. Some days are easier than others, as we all know.
I'll keep you posted....Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Please do. I'll be watching for your posts.
Posts: 830 | From Colorado | Registered: Mar 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Brief update~
Cultures taken on the 23rd, and 24th from the peripheral veins show no fungal growth.
Cultures taken from the picc line on the 13th and the 20th show fungal growth of an unknown origin.
Picc line itself was negative for fungal growth.
It is thought that the hub was the source of contamination.
It is thought that I do not have a systemic fungal infection since I have no fever, chills or rash.
I am cleared to leave town for a few days (the doctor has my cell number should he need to get ahold of me.) I have promised to come back to town if I get sick.
I am to stay on the expensive anti-fungal drug for the rest of the week.
Will talk to PCP later this week, and LLMD next week.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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