posted
Hi- I was wondering if there is any connection between lyme disease and high levels of blood porphyrins. In the past the doc thought I might have porphyria, because of my severe GI symptoms and leg pains. However, I was given the 24 urine catch and the stool sample which showed nothing abnormal. However, the stool and urine were not taken during a "flare up" as would be necessary to show Porphyria. I am wondering now that I have a lyme diagnosis if there is any connection there. Thanks, Renny
Posts: 341 | From NY/FL | Registered: Apr 2010
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posted
Are you being treated with abx? Have you been tested for a "walking pneumonia" infection? Chlamydia pneumonia (Cpn) can be chronic. Killing the Cpn bacteria can produce a secondary porphryia. Here's a link:
posted
Yes I just started with doxy last wednesday (lyme is a brand new diagnosis but I have been sick for about 7 yrs). Thanks for the link, I will check it out.
Posts: 341 | From NY/FL | Registered: Apr 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Doxy is a drug that is on the "safe" list. Still, you will need good liver support. Always, good liver support. Milk thistle is the most common.
Glad to see Agmaar posted that link. It's also very relevant for lyme patients.
One LLMD thinks that 80% of lyme patients have one form of porphyria, KPU/HPU. A urine test is used for that - but also other kinds of porphyrias can occur and testing is much more involved as urine can't be used to test all types.
And, true, a person needs to be in an acute state or tests may not show anything at all. Family history, symptoms also matter greatly.
I have two kinds of genetic porphyria and I also have lyme and several other tick and stealth infections. Please see ALL the links here. Testing for porphyria is very complicated. Most tests are not done correctly and, even then, it's tricky.
A "secondary porphyria" can be from any number of infections or toxic overloads. Much about porphyria is covered within the links here but also know that it's good to avoid drugs that use the C P-450 liver detox pathway if you have problems with them. More about all that here:
posted
Thanks for those links. I am going to read up. Do the high porphyrins mean porphyria? is this something I should speak with the LLMD about? Obviously I am feeling a bit overwhelmed having just been diagnosed last week. However, I have always thought porphyria fit my symptoms pretty well and that the tests that were done on me were not done correctly. I was tested by a hematologist- it seemed he knew very little about porphyria...
Posts: 341 | From NY/FL | Registered: Apr 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Any family history of sudden deaths from drugs, especially in the E.R. or surgery? Have you ever had unexplained bad experiences from meds?
Otherwise, I'd let your LLMD take it from here but just be sure he knows if you have harsh reactions to certain meds.
If you do have porphyria, it is vital to treat infection. Does your LLMD know about liver support, etc. All lyme patients need to be careful of their liver. So, you may be covered just fine with your LLMD. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
My doc didnt mention liver support, but he JUST started me on a trial of doxy for four weeks. i will mention this to him next week. I will also mention the high prophyrins and see what he thinks. Do you get heme infusions for your porphyria?
Posts: 341 | From NY/FL | Registered: Apr 2010
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