BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
I'm on Doxy, Malarone, Zith, Flagyl, Bicillin, Art.
My morning rust colored urine has not abated at all. It's full of red blood cell casts. Only morning urine is dark. It's pale yellow the rest of the day. I stay hydrated.
Other symptoms are improving, but slowly.
I think my Babs has finally become Atovaquone resistant. I know I'll change out the Malarone next round. I'm ready for Coartem.
How long did it take your red pee to go away? I'm not due for LLMD appt for 2 months, but could get appt with assistant right away.
Should I get on Coartem? My CBC and kidney panels are fine and I would like them to stay that way.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Porphyria connection? If so, immediate action would be vital.
That's urine is darkest after fasting all night is a clue. Fasting can bring on attacks.
Of course, it could be other things, too, but I would take action now to have glucose in my body. There are also certain herbs that can be of help.
IV heme products may be needed, though, if porphyria. Detail below in the links.
Kidney panels may have also checked for porphyrins but, generally, that is a full 24 hour collection test and the collection sample must not see ANY light.
24 hour stool AND a blood test (where the test tube is always in the dark, too) is required. Light should never hit any of the body fluids being tested or it can ruin the test.
Aluminum foil is wrapped around the vial used to collect the blood. For urine, after collecting in a "hat" in a darkened bathroom, it's immediately put into a very dense brown plastic jug and set in the fridge until the full collection is done.
Various KINDS of porphyria require different kinds of tests, too.
Please consider whether porphryia might be a player here. If so, immediate care is best as it could get worse.
Right now, just in case, be sure you have some glucose in your body as, if porphyria, glucose can prevent a (worse) attack. Porphyria can be fatal so it's a really important consideration.
Hope all is better soon, though. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Many good links here, including for KPU / HPU -
Posts: 48021 | From Tree House | Registered: Jul 2007
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
Silly question-but are you taking a supplement at night that could turn your urine rust colored?
Weird it is only the first urine of the day...I know it's more concentrated, but i would look at all the other factors too.
Posts: 1276 | From maryland | Registered: Jan 2009
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
It's definitely Babs. I just can't tell if I'm herxing or regressing. I used to know. Now it's unclear.
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Do you think it's one of your meds? I have babs and I only had occasional rust pee when I was on rifampin treating bart. Mine has been yellow the whole time treating babs.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
wouldnt this be a good thing in the sense that you can see the dead RBCs that used to contain babs? it's probably not harmful.
Posts: 3528 | From US | Registered: Apr 2007
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
CD57 - Yes, it would indicate that RBCs are dying in droves. Awesome if it's the meds. Not awesome if it's just more and more Babs activity lysing my RBCs. In malaria, very dark urine (black water fever) is a sign of progressing disease and kidney damage.
But, do not fear! I've worked it out.
I sleep late so my first dose of meds is around noon. The second dose is around 9:00 or 10:00. So I have higher blood levels at night. Plus I add more herbs at night. So more die-off.
And the morning urine has collected all night, so it represents (for me) at least 10 hours of RBC casts. I pee all day, so fewer casts have collected in the urine.
I'm OK with this sign now. After five years of abx, I'm worried about my organs, but everything (according to labs) seems to be in better shape than before starting treatment.
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