Keebler
Honored Contributor (25K+ posts)
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posted
- Keebler - comments ?
Not a chance! This would be very dangerous for anyone with any kind of porphyria. More than just a little L-Glutamine can also lower the seizure threshold. I'll stop with that. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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massman
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posted
Bhealthy - you could do psyllium husk in water for bulk.
If I eat for ketosis I have noticed a bit of constipation.
Keebler you could get EDS for that to see if there is a predisposition.
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treepatrol
Honored Contributor (10K+ posts)
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posted
Good artical
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Than how come humans are biological herbivores? Why are the longest lived cultures in the world, primarily vegetarians living mostly on carbs, such as potatoes, beans, grains, veggies, etc.
No offense at all, but this site is nonsense.
Take a look at real data, real research, not joke sites. This isn't even worth arguing.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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massman
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posted
richie - could you please list sources on what you have stated above ?
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massman
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Keebler - I did a search on porphyria this AM an got some continuing ed for sure. Biochemistry for sure.
Are there reliable tests to find if one has it or other types of it ?
If yes how reliable are the tests ?
Would increasing liver + bone marrow health decrease it or its expression ?
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I think we all metabolize differently (see Dr. Mercola's opinions on this, but not the only reference out there), so one type diet doesn't work for each one of us.
if I start eating very low carb, and I have tried it a few times, I start feeling very ill. I HAVE to have some starchy carbs to function optimally. I do not need a high amount of protein (though I did when I was sick).
If this kind of diet works well for you, that's great, I'm glad you found it, but we all come from different backgrounds and need different types of food.
As Keebler mentioned, I suffer from pyroluria, a type of porphyria, so perhaps that's why I don't do well on the low carb diets.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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massman
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posted
I understand that we metabolize differently, have known that for years.
Almost everyone here assumes that I am telling everyone to eat the same way. I have never said that at all. I am trying to make people aware that fat is not the evil thing it is now perceived by most to be.
SGK could you answer the questions I posted a bit above regarding your and Keeblers condition ?
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Some earlier posts flying around suggested that we could survive on only protein and fat. I disagreed. I said we require carbohydrates (mostly complex, of course). That was challenged.
I've never said fat was bad. I don't know that anyone did. As we learn the real definition for fat and for carbohydrate, we see that these are actually good for us, if consumed as intended by nature.
My big push with this topic has been the need for vegetables / complex carbs being vital to a good diet. Protein, too, is needed - of course. And those who are ill may require more protein.
However, for patients with any kind or degree of porphyria, protein has to be modified in the way it is achieved. And carbohydrates are expressly required (using wisdom, of course).
-----------
Here is more about porphyria as relates to lyme patients - and others - be sure to read the links on secondary porphyria in the first thread - and the KPU links toward the end of the thread.
Answers are in the links, it just takes a lot of reading:
. . . Glucose can diminish excess excretion of heme precursors, which, in turn, can prevent an attack or can hasten recovery from an attack of the acute porphyrias.
. . .
When the Atkins Diet, which was a high protein/low carbohydrate diet, became popular a number of years ago, many Porphyria patients who adhered to this diet became ill.
It soon became apparent that their severely reduced daily carbohydrate count exacerbated their Porphyria. In fact, complying with the Atkins plan precipitated attacks in some previously undiagnosed and non-symptomatic individuals.
. . . . -
[ 10-21-2009, 03:25 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I totally agree with you about fats. I eat lots of them and a variety of different ones. I hate, hate, hate the low fat craze. I think it's counter-productive for pretty much everyone.
Often birds show symptoms more quickly than humans, which is why they were brought into the coal mines. My bird was on regular a bird food diet of "perfectly balanced pellets" and seed. She's a tropical bird that would live in the rainforest and eat red palm nuts. She had been chewing off all her feathers for years. I happened to read an article on supplementing red palm oil in her diet, so did. She immediately stopped chewing her feathers and is in full feather after just a couple months. To me, this shows how important the right fats are.
www.drrandy.org click on articles for an article on pyroluria.
Dr. K has found 82% of Lyme patients have pyroluria, and nearly all of them have it if they've been sick more than five years.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
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- Thanks, SGK.
Thanks so much for including the statement about Dr. K's take on this. I've thought for a long time that porphyria has been something that needs a stronger acknowledgment.
As you noted, pyroluria/KPU is one type of porphyria.
And there are also many other types. Each requires different testing, (a urine test is not enough for most) . . . and each type of porphyria can have a separate subset of symptoms. Some require sheltering from the sun; others do not. All that is explained in links above, though. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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quote:Originally posted by massman: I understand that we metabolize differently, have known that for years.
Almost everyone here assumes that I am telling everyone to eat the same way. I have never said that at all. I am trying to make people aware that fat is not the evil thing it is now perceived by most to be.
I have not seen anyone here or in the other thread suggest that fats were evil.
Did I miss something?
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massman
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posted
Will comprehensive liver and bone marrow support help ?
Will taking lots of vitamin D3 help or hurt ? PCP (DO) tested me for that and said I am WAY down. Vit D is fat soluble, I have no gallbladder. It went on permanent vacation years + years ago.
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Keebler
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- Liver support is a cornerstone to both lyme and porphyria treatment. It is the first absolute rule before anything else. Milk Thistle is suggested by many LLMDs. NAC, ALA, too. Beta Carotene is great, too, as it lowers porphyrins.
Don't know about bone marrow support. If concerned about the possibility of anything raising porphyrins, ask the experts - call the foundation folks - or go through the texts at the main thread.
Be aware, though, that the porphyria foundation folks are not fans of supplements, understandably so, since supplements have a wide range, etc. (too tired to think of how to finish that sentence.) But some supplements are fabulous for porphyria. Schizandra is one (see main thread).
As for D3, of course, if you are low, you should follow your doctor's orders about dosage you need at this point in time. You don't need a gallbladder to absorb D3.
It is best if you have a LLMD or LL ND who knows about lyme and all other chronic stealth infections . . . all about all the porphyrias . . . and about the supplements. In a perfect world . . . that could be one person. A good team of experts is also a dream of most patients.
As it is, most of us have to study most of this on our own. I'm glad more and more attention is coming around the specific liver support issues like this. There is much more to read than when I found out about porphyria in '94 as avoidance was the main tool. Now, we are learning about so much more. -
[ 10-21-2009, 02:54 PM: Message edited by: Keebler ]
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