Porphyria & Dark Urine

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ChronicLyme19
Posts: 564
Joined: Mon 11 Aug 2014 17:42
Location: NY, USA

Porphyria & Dark Urine

Postby ChronicLyme19 » Wed 21 Dec 2016 2:01

Does anyone know of conditions which will turn urine dark on exposure to sunlight other than porphyria?

See example picture in this study here:
Chen G-L, Yang D-H, Wu J-Y, Kuo C-W, Hsu W-H. Neuropathic pain in hereditary coproporphyria. Pakistan Journal of Medical Sciences. 2013;29(2):672-674.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3809238/

My question arises because I started having side effects on dapsone. It was working rather well stirring up symptoms from when I was first bitten by the tick and herxing for the first few days (something none of the other antibiotics have done so well), but then I started developing methemoglobinemia along with some other odd bloodwork, so I was pulled off of it. LLMD noted it was the second highest level of side effects they had ever seen, and promptly yelled at me for not having gone to the ER. Frankly, I just felt a little tired (I had felt much much worse before I got diagnosed), plus I wasn't turning blue yet. So then, why if everyone else tolerates it so well, could my body not handle it? (I was also on deplin and leucovorin and antioxidants). I started going down the list of conditions not compatible for dapsone:

"Porphyria
Anemia
Cardiac disease
Pulmonary disease
HIV infection
G6PD deficiency
Liver impairment
Sulfonamide allergy is associated with dapsone allergy"

Ok, they've ruled me out for all, but porphyria and G6PD. It seems you can do a poor man's test for porphyria at home by leaving your urine out in the sunlight and watching for a color change. So I did so. Started off a nice golden yellow (don't think I'm dehydrated), and it's turned a nice medium tea color. Dapsone happens to be on the list of drugs NOT to give folks with porphyria (http://www.porphyriafoundation.com/drug-database). So now I'm wondering what else can turn urine dark in sunlight? LLMD would like to try dapsone again at half dose, but I think possibly now they may have to rule our porphyria before trying it again.

Other odd bloodwork from venous draw (two weeks after stopping dapsone):
Oxyhemoglobin 36.7 REF 95-100
O2 saturation 37.9 REF 95.0-98.0
O2 content 6.6 REF 15-21
Finger pulse oximeter reads 99
Half of what you are taught is incorrect, but which half? What if there's another half missing?

Anushka
Posts: 24
Joined: Tue 4 Nov 2014 17:54

Re: Porphyria & Dark Urine

Postby Anushka » Wed 28 Dec 2016 5:04

Hi ChronicLyme19,

I asked on the previous thread how you were doing with Dapsone and just saw this thread here. That answers
my question somehow....sorry to hear you are having trouble.

I can't answer your question regarding Porphyria, but what I can say with certainty is that the first thing you should have
been tested for by your doctor, before starting Dapsone !, is glucose-6-phosphate dehydrogenase. It is a standard test you do before you start this medication; if this test is positive you cannot take Dapsone.

G6PD deficiency is an inherited condition in which the body doesn't have enough of the enzyme glucose-6-phosphate dehydrogenase, or G6PD, which helps red blood cells (RBCs) function normally. This deficiency can cause hemolytic anemia, usually after exposure to certain medications, foods, or even infections.


My best
Anushka
Anushka

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ChronicLyme19
Posts: 564
Joined: Mon 11 Aug 2014 17:42
Location: NY, USA

Re: Porphyria & Dark Urine

Postby ChronicLyme19 » Tue 16 May 2017 3:32

Well, good news. Even tho I did not make it the full 6 months on dapsone, only made it two. It seems to have had a major impact. I have now been off antibiotics for about two months. Previous to this I could not last more than two weeks off antibiotics. Fingers crossed I am done with antibiotics for a long while. It feels good to be a normal person again.
Half of what you are taught is incorrect, but which half? What if there's another half missing?


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