That's all, don't know how to properly react to stuff at this point. Just wanted to give an update.

I have made an appoinment with a hematologist.

i am very interested in this subject. i have heard that heavy metals can cause porphyria by injuring a certain liver enzyme. there is also a cellular porphyria that has genetic causes.

what i don't know is if an active infection can cause porphyria...

may i ask how you were tested and what lead them to test you for this?

any info you can share would be great. i sure do hope you feel better soon.

KLP
 

I get that this is a good thing and treatable and manageable(sp?). Getting this under control will allow us to assess where the lyme is now. Which is all good.

I'd like very much to have a life again. I'm just feeling a little emotional with no sleep for a while.

Hey, maybe there's a way to extort more hugs, here.
 

i wanna get tested too - and i'm gonna run out and get some charcoal...

good to know its treatable - wonder how many lymies have secondary porphyria?

was it your docs idea to test? which lab did you u use? thanks again.

KLP
 

I forgot this part in the above post. I brought the information from that thread to the doctor.

I mentioned it after telling her what was going on and she had already thought of the possibility. I don't know if she would have thought to test for it if I hadn't asked.

She went through the medical books to find how to test for the type we suspected, right then. We figured start with a 24hr urine and see, first.
That's what came back positive.

From what I understand there are quite a few different types (maybe 7?). Not really sure how a lot of this works yet.
 

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oops!
Lymetutu
 

Also, I still wonder if there is underlying issues with bacterial infections that could cause this. Any ideas???

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oops!
Lymetutu
 

I'm sorry you're having to deal with this!

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oops!
Lymetutu
 

quote:

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Originally posted by Lishs mom id you have your screen confirmed by a quantitative test for PBG in the urine?

Also, I still wonder if there is underlying issues with bacterial infections that could cause this. Any ideas???

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I haven't seen the result I only got the message that it was positive and to call a hematologist.

My internist (who is my LLMD) is faxing records to the hematologist. I have no idea what comes next.

I think this is a problem that's been going on for a long time. I don't know of it's genetic, in this case, and/or the lyme, treatment or car accident triggered it.

It's hard to know what came first.
It's a mystery to me, as well.

[This message has been edited by trueblue (edited 21 June 2005).]
 

quote:

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Originally posted by Lymetoo:
There's a connection with malaria....hmmm. Did your dr say you needed to eat more carbs, as the above link mentioned? Then that will stir up the yeast. UGH.

I'm sorry you're having to deal with this!

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I was out for a while and also forgot to check the box to be emailed replies. (I hate that I can't undo that.)

The doctor didn't say anything except, "we should figure out what test to run" and "it was mentioned on that episode of House where they mentioned lyme". Which I thought was pretty funny.

I don't see the hematologist until next monday, I'll see what he says. I hope he's not an a jerk. I hate going to new doctors.

............................................
As far as the carbs go, heehee, I thought that sounded great. Even when doing extrememly low sugar, I was never able to do no carbs.

I was able to cut out added sugars but needed breads and potatoes. The yeast was under control though.

............................................

Thank you for the sympathy about going through it, I appreciate it; but in actuality this is the best news I've had in a while.

I could end up with a multitude of symptoms gone and find out my lyme is in remission or responds to treatment.

It'd be nice not to be a treatment failure for once in 12 years. Also nice to have 20+ years of strange vague illnesses resolve.

Wow! that's a whole lot more hope than I've had in a long long time. (I'm crying but I think I may be happy or possibly relieved.)

............................................

I once had a very prominant LLMD tell me that maybe I had post-lyme syndrome. If I told you who it was you'd fall over laughing. It's someone you'd never think could form those words.

No, I'm not telling! But it took me a while to pick my jaw up off the ground.