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» LymeNet Flash » Questions and Discussion » Medical Questions » Porphyria

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Author Topic: Porphyria
R62
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Where is the thread? I keep following the link that is posted on various other posts and it is a dead link.

Need info desparately. Think I am having attacks. My sister tested postitive for this when she was very ill, so it may be an issue for me and I need help!!!

Thank you.

Robin

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R62
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Question:

Will a porphyria attack cause uncontrollable shaking? I had horrible nerve vibrations in my spine, shaking, tachy, BP up.. all sounds like panic attack, but something has triggered and I need to make sure not porphyria.

I had one attack 5 years ago, now two in the last few weeks and minor ones in between.

Sometime the symptoms prevail when the tachy is gone. I know this could be lyme, babs (feel breathless), bart (vibrations?).. almost wish it is one of these.. dont know how to handle porphyria. ALso feel slightly psychotic.. like I am gonig to loose my mind.

I also feel like I am starving, like my blood sugar is very low and I need sugar. Could be hypoglycemia.. ?? yet I feel nauseated (slightly sore stomach) and have loose stools.. stil I know this can be adrenal, but adrenal is also part of porphyria ad I cant get past my sisters positive. So need to amke sure.. afraid to take mino here or any drug.

Thanks!!!!!!!!!

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Keebler
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If you think you are having a porphyria attack: get some simple sugar and beta carotene in you as you HAVE SOMEONE ELSE TAKE YOU TO THE E.R. or URGENT CARE IMMEDIATELY. Porphyria can be fatal.

It may be best to call an ambulance as they can get the process started.

Tell them your sister has porphyria (best if you know what type).

They may put you on an IV of glucose and/or heme product. This usually stops the attack and can save a life IF done in time.

==========

For later, to read:

I removed my thread for various reasons.

The most important links are below. Read them ALL. Each provides some details the others do not and you'll need to study them all for a well-rounded understanding of how to take care of yourself if you have porphyria - and also to under your sister's treatment and care path.

Your entire family should be tested for the kind of porphyria that your sister has. Other than secondary porphyria (acquired from infection or exposure to chemicals), most of the porphyrias are genetic. I'm surprised your sister's doctor did not tell the whole family to get tested. But, of course, it's very complex.

Most doctors will not consider secondary porphyria and many still think the urine test is sufficient. It is not.

--

You asked: "Will a porphyria attack cause uncontrollable shaking?"

Yes, it can. It can also be any kind of infection, adrenal dysfunction, low blood glucose - or any combination.

You said: "I also feel like I am starving . . ."

If you have porphyria, it is very dangerous to go without healthy food for too long.

Did you measure your blood sugar? You really should get a meter so that you can be sure you don't have low blood sugar as, in a person with porphyria, low blood sugar can drastically allow for a serious increase in the number of toxic porphyrins.

Low blood glucose can trigger a porphryia attack. Keeping it stable can prevent one.


When you have such an attack you can test your urine as described below. It may be fine but that would not rule out porphryia. However, if collected in a clean, clear glass jar and placed in the sunshine - if it turns any color, make note of the color and read on. Purple is not the only color. For those porphyrias in which the urine turns color, there are other colors of note.


Going right to the experts, you can find everything you need in this set of links. I'd first eat some organic carrots (or juice), eat some leafy greens and take some good fish oil and rest.

Then, be sure to read all you can from these sites.

You can also call and talk to them but, as lyme and other tick-borne infections or disease (TBD) are very unique, it is best to consult your LLMD - or ask your LLMD to refer you to a LL liver specialist who is well versed in both TBD and porphyria.


Diet is key. Beta carotene (from many different sources) is your life-line.

A no-carb diet can be fatal and a low carb diet can be dangerous for a person with porphyria.

However, there is a more healthful way to approach the need for glucose by patients with porphyria. First, though, you must read all you can about this so you understand the reasons for it and the concepts behind it.

Adjustments with complex carbs and plenty of beta carotene are key for me. Blood sugar stability is a must. Proteins are harder to tolerate but be sure not to go low protein. There are ways to work with this.

Liver support supplements are also very important but rather ignored by the leaders in the field of porphyria because they don't understand the complexities and think all supplements are suspect.

It is probably necessary to avoid all tinctures due to the alcohol as that can exacerbate porphyria. Some tinctures can be found in glycerin form but most supplements would be best in capsule form.

Milk Thistle, NAC, ALA, etc. are vital.

Curcurmin is also a very good supplement to consider using on a daily basis.

Adding lots of Turmeric and Cumin to your food is a good thing. With black beans and brown or wild rice - lots of greens - and olive oil - this sort of meal will hold you over very well.

==================


www.porphyriafoundation.com

THE AMERICAN PORPHYRIA FOUNDATION


=======================

http://www.cpf-inc.ca/

CANADIAN ASSOCIATION FOR PORPHYRIA


=======================

http://www.cpnhelp.org/secondaryporphyria


SECONDARY PORPHYRIA: what you should know before starting a CAP (combined antibiotic protocol)

=================


KPU (Kryptopyrroluria) is just ONE type of porphryia that seems to have importance regarding patients with lyme, autism and those who have issues with heavy metals:

http://www.klinghardtneurobiology.com/KPUprotocol.pdf

KLINGHARDT's KPU PROTOCOL


===================

More discussion here about KPU (kryptopyrroluria) regarding patients with chronic lyme:

http://www.drrandy.org/article.html


A New Breakthrough In Helping Chronically Ill Patients - by Randy S. Baker, MD

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[ 11-11-2009, 07:47 PM: Message edited by: Keebler ]

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R62
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Thank you!!!

My sister was very ill. She tested postive via stool. Then sent to a specialist who said she did not have it???

She seems to have had no more problems since she is well now, though I can see that she may be controlling this without knowing it..

Robin

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Keebler
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Robin,

You need to find out the KIND of porphyria that your sister's test was positive.

She should have had all three tested: blood, urine and stool. Not just stool. But her first test still held a clue even if the procedure was not complete.

Yes, it can show at one time but not at another. But, if it showed once, that means she could have that genetic type but, for follow up tests, she was under control.

The reason the type is so important is that self-care is different regarding the KIND. For instance, some porphyria patients must avoid sunlight. Others require it.

See if she can find the test results as that can give you clues as to how you might monitor your own care if you get reactions from certain drugs, foods or activities.

It could be your sister also had a temporary porphyria due to stressors of that time. However, this should be further explored in case is it genetic. Your family might need assessment.

If you have this information, a more precise lyme protocol might work better for you. (However, much is still how you FEEL with it).

Oh, not all doctors know much about this field, at all. But that is the very reason you can't just drop it.

WIth tens of thousands hospital deaths each year, I think many could be due to undiagnosed porphyria - patients being given drugs their livers can't handle.

But, then, too - tylenol is given out like candy and that can damage anyone's liver in no time at all.

Good luck.
-

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R62
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Thank you. I dont think she still has the paperwork. It was over 15 years ago. Im suspecting not genetic (hoping) because family members have been on many drugs and seemingly no reactions.

After initial doctor tested, she came away with the idea it was variegate porphyria, but I am not sure she didnt look up porphyria on the internet and assume.. or if she was told that. Porphyria "specialist" said no way.. no porphyria. I have no clue what happened. Something showed up in the stool test.

But I think about this. I have tested my cytochrome p450 pathways and know which ones are polymorphic.. do you know if that is the source if drug related attack.. it is a specific pathway polymporphism triggering or any drug and any pathway?

Thank so much.

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Keebler
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Polymporphism stuff is way over my head.

Porphyria is a condition, not an infection. Therefore, morphing is something that I think may not apply here as if it were an infection.

I have chronic variegate and also proto-porphyria. Possibly genetic but also could have been acquired from infection and toxic exposure.

If your sister had/has the variegate type and if it is genetic, at least that is not a type affected by exposure to the sun. That is good. Still, the kinds of drugs to avoid are generally the same, and beta carotene is a huge help for every kind of porphyria.

For other questions, see the links above. You an always call the American or the Canadian groups and talk with someone who can better direct you.

See the KPU links as Klinghardt has found many lyme patients to have that type of porphyria and see the Secondary article, too.

Be sure you know how to prevent an attack.
-

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karenl
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Robin,

you wrote you are shaking? Is it internally or can you actually see the shaking?
My vibrations are only inside, so it is different to yours. Did you see the yasko group?
Karen

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R62
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Thanks, Keebler.

I found this link for a test, but it seems best to contact one of the groups above first:

http://www.metametrix.com/content/DirectoryOfServices/0060PorphyrinsProfile

Karen, its both. I was shaking like I was in shock. But it started with internal vibrations. I also feel very weak and have abdominal symptoms that seems odd.. like I am very very hungry and nauseated at same time. Weak. Muscles feel weak.

I think I need to check this out.

I read to drink lots of water to wash out water soluable porphyrins and to take charcoal for fat soluable ones. This from the CPN site. I did drink lots of water and it did seem to help with the attacks.

http://www.cpnhelp.org/porphria (about water)

http://www.cpnhelp.org/secondary_porphyria_so_so
(charcoal and chlorella)

Cant find a definitive if mino can be a trigger..

I have run all the Yasko tests.

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R62
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Metametrix has very good info as well. Just click on Interpretive Guide and Sample Reports.
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Keebler
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R62,

You said: " . . . Cant find a definitive if mino can be a trigger. . . ."

ANY drug can trigger porphyria. It need not be on the list. I've not taken a look about mino but my doctor really stressed that even a drug on the "safe" list and even one that previously had been okay for me - can change.

Or, rather my body's reaction to it can change.

Here's just one way a drug on the "safe" list can still trigger porphyria (and I use the broader term to encompass all the types):

Even if a "safe" drug is taken but the liver is more stressed with the C P-450 pathway from die off toxins that further increase number of porphyrins, then the "safe" drug may not directly increase porphyrins but can contribute to that happening.


Mino can be OTOTOXIC (to the ears) - but not for everyone. Still, the toxicity is there (according to Neil Bauman and some other researchers with whom I've spoken).

With certain precautions - specific liver protection such as NAC, etc. - this may be mitigated at times. Liver support can make the difference in whether a drug can be tolerated or not. But sometimes, even with the best liver support, that is not enough and a different drug (or approach) needs to be used.

=======

Some discussion about mino here:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/65801?

TINNITUS - ears, etc.

-

[ 11-20-2009, 05:06 PM: Message edited by: Keebler ]

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Keebler
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From Publication: Explore! / November 2009

http://betterhealthguy.com/joomla/images/stories/PDF/kpu_klinghardt_explore_18-6.pdf


Kryptopyrroluria (aka Hemopyrrollactamuria): A Major Piece of the Puzzle in Overcoming Chronic Lyme Disease


By Scott Forsgren, USA

Summary: A review of KPU and its impact on Lyme Disease with Dr. Dietrich Klinghardt MD, PhD

pdf - 7 pages

-

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Keebler
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http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/84362?

Topic: which lab is best KPU?

This is a link suggested at the above thread:

http://www.biocenterlab.org/Merchant2/merchant.mvc?Screen=CTGY&Category_Code=Lab_Tests

Bio Center

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GiGi
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http://lymeinducedautism.com/images/1_KlinghardtKPU_09_PX.pdf
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GiGi
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http://lymeinducedautism.com/images/1_KlinghardtKPU_09_PX.pdf
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GiGi
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www.hputest.nl
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Healing in Santa Cruz
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Bio Center is the lab my Md used and I was high positive.It was not the 24 hr test.Grateful to say Medicare paid for my test. Joyce
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R62
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Thanks for the thorough explanation, Keebler!
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Pinelady
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Yes thanks. You know from labs avg. doc would never suspect.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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lightparfait
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My daughter ha athis and we hope that eventual supplementation with the correct and missing minerals will help her remaining issues.
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Keebler
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Hopefully, the specific enzymes that the liver can't manufacturer will be available someday, too - for those with the genetic types of porphyria.

But, healing the liver is the top hope so that it can better do its job.

To help your daughter along . . .

Whatever kind or degree of porphyria, a good organic carrot juice is great. A huge glass need not be encountered, just a juice glass size a few times a day, is ideal.

The beta carotene in greens powders, too, can be a huge support.

When I was first diagnosed with 2 kinds of porphyria, the MD told me to eat a couple small candy bars a day. Well, I could not do that but have found that 4 oz. of carrot juice or greens powder worked better and beta carotene is an "official" treatment for porphyria.

And, I so wish the porphyria doctor had told me that I could have gotten very dark chocolate. I knew nothing about all that then. Now, I know that an 85% dark has just enough sugar to help me in a porphyria attack. Just one ounce does the trick.


Once the infection load is down (as lyme is one of the MOST toxic infections), and the liver is less stressed and rejuvenated, a tendency for excess porphyrins can certainly resolve but it's good to also be alert in the future by studying each new drug before taking - and continuing to practice good liver protective. It's a very good life-skill for everyone.
-

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lightparfait
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Thanks Keebler...always good advice!
will try the carrot juice and very dark chocolate!

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Keebler
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Emla just posted this:

A new ebook about Pyroluria (KPU) is available.

http://55fix.com/aerlink.php?page_id=1048&link=Bacterial%20Pyroluria%20Exposed


From the discussion thread that Emla started:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/89712?

Topic: A new pyroluria (KPU) ebook is available

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