posted
I was diagnosed with this by my LLMD. I asked if I could have a test done to show whether it was genetic or caused by Lyme. She said that it didnt matter because they could both be treated with the same protocol. does anyone know if this is true? I thought that if it is genetic then you have to avoid the sun too, where if it isnt then you dont have to.
Posts: 723 | From boston,ma | Registered: Jan 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- katrinab,
I have to break up your post to be able to read it, then I'll be back with some links for you: ------
You ask about porphyria:
"I was diagnosed with this by my LLMD.
I asked if I could have a test done to show whether it was genetic or caused by Lyme. She said that it didnt matter because they could both be treated with the same protocol.
does anyone know if this is true? I thought that if it is genetic then you have to avoid the sun too, where if it isnt then you dont have to. (end quote) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- What KIND of porphyria? There are at least 11 types (maybe more).
Only one or two kinds of porphyria requires avoiding sunlight. The other kinds do not.
Do you have a lot of skin disruption from sun exposure (not taking into account doxycycline or other Rx that can cause problems with sun)?
Depending upon your history, that of your family and your symptoms, you may want to consider genetic testing IF that would help other family members get assessed.
It could save the life of someone you love, especially in an emergency situation where certain Rx that may trigger a porphyria attack that could be fatal.
However, testing is not all that perfect. And your LLMD is correct in that treatment would be the same.
Most doctors, however, would not recognize porphyria without certain tests if you were to be in the hospital and note the need to avoid all drugs that can trigger a porphyria attack.
But, again, the testing is far from perfect and, if this is caused by the stress from lyme & co., then it may not be a problem after you are done with treatment.
But, really, I think MANY people suffer from high porphyrin loads and go undiagnosed. Not all are genetic causes but liver stress. Just my thought.
Take some time and think about your blood relatives, going back a couple generations.
Did any have:
intolerance to even a little alcohol? too easily drunk and too easily hung-over for far longer than "normal"?
depression or mood swings? anger management woes?
extreme fatigue, trouble concentrating and tracking?
stomach problems, constipation alternating with diarrhea?
sensory startles or seizures from sensory triggers?
more details at the link below.
Regardless of the cause, the best preventative treatment is beta carotene, lots of green powders, etc. to help keep the porphyrin load low. Other antioxidants and liver support can help, too.
If a porphyria attack hits, though, IV GLUCOSE or an IV HEME product maybe required to save a life.
To avoid getting to an emergency state, certain drugs must be avoided or - when necessary, balanced with specific liver & kidney support (and even that may not work).
Frequent meals, getting enough carbohydrates is also vital (but tricky) for anyone with ANY kind of porphyria.
DMSA (used to treat heavy metals) has been shown to lower the porphyrin level in austic children (see PubMed).
My porphyria thread with links are in my old computer and that will take a while to sort out --
just now, the leaf blowers have descended upon my apt. so I have to crawl under some furniture now. I'll be back later but you might seek out answers here:
High dose vitamin C helped me as did some of the other items listed.
If you are willing to share, I am curious what type of "protocol" is your doctor suggesting.
On one occasion I ended up in the ER.... Keebler is sooo correct.... they didn't have a clue as to what was wrong or to do with me....
Posts: 396 | From EAPennsylvania | Registered: Dec 2007
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posted
My test shows I have high coprophorphins? i dont know what kidn i have, and my doctor said it doesnt matter because it can all be treated with the same protocol. i dont know if this is true, and i would like to know.
she has me on the KPU/HPU protocol designed by Dr. K. I dont really know if she knows what shes doing. It is just a bunch of minerals such as zinc, molybdenum, biotin, etc. i dont know what the difference between porphyria and pyloluria is. do any of you?
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