LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » Porphyria Question to those who have it or those who understand it

 - UBBFriend: Email this page to someone!    
Author Topic: Porphyria Question to those who have it or those who understand it
motownlyme
LymeNet Contributor
Member # 11485

Icon 1 posted      Profile for motownlyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
I know that a couple of you are looking at the Vanderbilt protocol. I have an odd set of symptoms and am wondering if I might have secondary porphyria.

About 2 hours after I eat breakfat(not always,but enough that it's a pattern) I start getting air hunger and chest pressure/chest pain.

It usually clears up. I eat lunch. Same thing happens about 1 1/2 to 2 hours later. Air hunger and chest pressure/pain. It is usually more intense. When it's really bad, it rolls into evening and just keeps building.

About 6 days+ a month, I get terrible stomach pain to the point I'm rolled in a ball. It is accompanied by the chest pressure and air hunger. It usually goes away in a few hours almost as suddenly as it came on.

Dr.s told me stomach pain was my gall bladder. Had it removed. Not a stone in sight. Still no relief from stomach pain.

It isn't heartburn or anything like that. I've been told my heart is ok. Stress tests, EKGs, heart catherization.

LLMD seems baffled when I describe chest pressure/pain and air hunger that comes and goes in regular cycles. At least LLMD has good grace to look baffled. Regular ducks reach for rx pad for SSRI or a referral to mental health clinic.

I've tried to read the web site that is linked cpnhelp.org but it isn't as easy to follow as lymenet (and I have trouble nav lymenet :-(

If you have porphyria or understand it, does this odd pattern of chest pain/pressure and air hunger/shortness of breath sound like it might be secondary porphyria?

Posts: 237 | From WV | Registered: Mar 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
Abdominal cramping, alternate diareahha (never have learned to spell that) and constipation are some signs, but there are others.

I was dx with 2 types of chronic porphyria in the mid 90's. I'll post a bunch of links and you can read up on it.

Some other clues are if you are sensitive to alcohol, perfumes, chemicals, diesel exhaust, gas heat or stove . . . fatigue and brain fog, too.

this is listed below, but I would begin here:

http://tinyurl.com/yozppd From www.ImmuneSupport.com

Chlamydia Pneumoniae in Chronic Fatigue Syndrome and Fibromyalgia -

Secondary porphyria in relation to Cpn. This article seems to mirror lyme tx - and reactions - in many ways. The references are woven into text, and while this is about treating another chronic infection, still, good information.

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

PORPHYRIA LINKS
--------------

Regarding the liver's capacity to detoxify certain chemicals through the Cytochrome P-450 pathway. If certain enzymes are deficient, excess porphyrins can cause neurological problems.

There are at least 11 types, some differences in each type. Secondary porphyria can also be present at times if the liver is overloaded as with certain toxic infections or with someone taking many medicines.

This can be hereditary or acquired through chemical overload or infection overload.

-----------------
http://en.wikipedia.org/wiki/Porphyria

WIKIPEDIA - good start, but not complete
===============================

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

CANADIAN PORPHYRIA FOUNDATION


They have one of the best Doctor's Guides to Medication in Acute Porphyria.

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

www.porphyriafoundation.com/ Another great site.

AMERICAN PORPHYRIA FOUNDATION


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

http://www.cpf-inc.ca/e-guide.pdf

Patient's and Doctor's guide to medication in acute porphyria.

A 74-page pdf in English - (French edition is available through their home page)


DRUGS IN ACUTE PORPHYRIAS

http://www.cpf-inc.ca/e-guide.pdf 2007 Edition Swedish Pharnacopeia.

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

http://www.cpnhelp.org/secondaryporphyria

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

excerpt:

Symptoms of Porphyria-

Porphyria may affect the nervous system or the skin.

When porphyria affects the nervous system, it can cause:

chest pain

shortness of breath

abdominal pain

nausea

muscle cramps

weakness

hallucinations

depression

anxiety

paranoia

seizures

- full article at link above

-------------------

Fatality is possible as noted in other sources, not this article -

after a new drug that uses the C P-450 pathway in someone with undiagnosed genetic porphryria, say, especially in an emergency setting . . . although if the liver is over taxed it might possibly result in porphryia reactions in anyone. Keep in mind genetic porphryia is rare, so few doctors are familiar with it.


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

http://www.ncbi.nlm.nih.gov/sites/entrez

PubMed Search:

Porphyria - 8603 abstracts

chronic porphyria - 652 abstracts

porphyria, tryptophan - 59 abstracts

[edited to add] secondary porphyria - 182 abstracts

-
=========================

Tryptophan in any form (L-tryptophan or 5-HTP) can be very dangerous in anyone with porphyria. Avoid.

FASTING, DIETING can be dangerous, too. Frequent meals with some carbs are important. Less red meat can help. Dietary guidelines at the foundation links, although diet can be individualized in some cases.

Liver support is helpful, but strong DETOX measures can be harmful. Always go SLOW, GENTLE.

d-Ribose seems to be okay, from patient reports.

Of course, caution, beginning any new meds.

--------

Some herbs that help the liver are good for support - milk thistle, schizandra. Glutathione is good. I can post the citations later for that.

- this is a work in progress.

-

[ 11-03-2009, 01:06 PM: Message edited by: Keebler ]

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
motownlyme
LymeNet Contributor
Member # 11485

Icon 1 posted      Profile for motownlyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks!
Posts: 237 | From WV | Registered: Mar 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
from PubMed

http://tinyurl.com/5jxkry

J Assoc Physicians India. 2002 Mar;50:443-5.Links

Respiratory failure in acute intermittent porphyria.

Tyagi A, Chawla R, Sethi AK, Bhattacharya A.
Department of Anaesthesiology, UCMS and GTB Hospital, Shahdara, Delhi.

We report two patients of acute intermittent porphyria (AIP) who presented with acute respiratory failure.

Only one such previous report could be found. Occasionally, neuropathy may be the presenting feature in AIP which may progress to respiratory embarrassment.

The cause of this neuropathy has been hypothesized to be direct neurotoxicity of delta-ALA by interaction with GABA receptor, altered tryptophan metabolism and may be heme depletion in nerve cells.

=

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
seibertneurolyme
Frequent Contributor (5K+ posts)
Member # 6416

Icon 1 posted      Profile for seibertneurolyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Have you totally ruled out Babesia and Bartonella???

Hubby has had persisitent G.I. issues for over 7 years now -- nausea, some vomiting, frequent dry heaves, various stomach aches and cramps.

The air hunger is/was a new symptom for him a couple of months ago. In the past he would have a cough before the dry heaves and tremors started.

With hubby these attacks definitely seem to be exacerbated by treatment for Babesia and/or Bartonella. Finally in the last couple of months he had some additional treatment for G.I. parasites and has been able to tolerate higher doses of antibiotics. Seems to finally be getting some real relief from chronic G.I. issues.

Hubby definitely has the most trouble with breakfast.

Based on your pattern I am wondering if you might have a very mild unknown food allergy? Might be worth keeping a food log for a week or so to see if any pattern shows up. Many Lymies have gluten and/or casein (milk protein) intolerances.

Bea Seibert

Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121

Icon 1 posted      Profile for Jill E.     Send New Private Message       Edit/Delete Post   Reply With Quote 
Motown,

I've been interested in porphyria too for years because of mysterious intense abdominal symptoms -doubled over in pain like you mention, etc. Had never heard about the secondary form until I got Lyme and started reading about CPN which I don't have.

But I also wanted to ask if you've been checked for pancreatitis, because I have a mild form of it now, have mild upper abdominal pain, some mild air hunger I think (of course, I haven't been treated for Babs yet) - my gallbladder flunked the HIDA scan so the docs don't know if the gallbladder is the root cause of the pancreas problems or two different things.

But my lipase levels elevated - the tip off to the pancreas issue.

Just mentioning it in case the doctors hadn't checked it.

Jill

--------------------
If laughter is the best medicine, why hasn't stand-up comedy cured me?

Posts: 1773 | From San Diego | Registered: Apr 2006  |  IP: Logged | Report this post to a Moderator
motownlyme
LymeNet Contributor
Member # 11485

Icon 1 posted      Profile for motownlyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Fry found bartonella. LLMD didn't think there was enough to treat. I strongly disagree.

I have not been tested for pancreatitis or food allergies. It's the regularity of the chest pressure/pain and air hunger that has me stumped.

I've always felt it was somehow related to eating, but I can't seem to make any connections since it almost always come mid-morning and again mid-afternoon and happens no matter what I eat.

I'm eating a very limited diet now with very little variety so the food journal will be easy.(yeast free, wheat free, sugar free, very limited dairy).

I will check with LLMD about all the info you guys gave.Thanks for such great suggestions.

Posts: 237 | From WV | Registered: Mar 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-

I should have added this category to the PubMed section above:

www.ncbi.nlm.nih.gov/sites/entrez
PubMed Search: secondary porphyria - 182 abstracts

-----------------------------

http://pn.bmj.com/cgi/content/extract/6/4/255

Practical Neurology 2006;6:255-258; doi:10.1136/jnnp.2006.097527
Copyright 2006

NEUROLOGICAL RARITY
Porphyria for the neurologist: the bare essentials
T J Peters1, K R Mills2

Excerpt:

Relevant causes of secondary porphyria include chronic lead poisoning, hereditary tyrosinaemia, hexachlorbenzene poisoning, and liver disease including alcoholism and iron overload.

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

Secondary porphyria is not limited to Cpn. It can occur in anyone, but mostly in chronic illness (such as hepatitis) from the liver not being able to manufacture the specific enzymes required to clear more than the usual load of toxins (from infection, environment, heavy metals, or medicines). If suspected, alcohol is the most important thing to avoid (I know lyme patients generally do avoid this, but it's important to note).

It can flucuate and sometimes, if present, a modest meal including simple carbs can prevent an attack (such as a small bowl of oatmeal). If you suspect this during an emergency, be sure the do tests other than just with urine.

Tests are very involved. The "Poor Man's Porphyria Test" will not be an accurate measure with all types.

Good idea to rule out/ address possible other TBI, if not already.

Also, with springtime and everything blooming, added allergens are floating around.

Good luck. Take care.

-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
viva
LymeNet Contributor
Member # 8183

Icon 1 posted      Profile for viva     Send New Private Message       Edit/Delete Post   Reply With Quote 
If one of the factors associated with porphyria is the liver's inability to detox / defective enzyme pathways, then can it be diagnosed through the detoxigenomics panel that some here have written about? Or am I confusing two completely different things?

Thanks!

Viva

Posts: 532 | From southeast US | Registered: Oct 2005  |  IP: Logged | Report this post to a Moderator
roro
LymeNet Contributor
Member # 13383

Icon 1 posted      Profile for roro     Send New Private Message       Edit/Delete Post   Reply With Quote 
this sounds like the exact same symptoms I have had for over a year now. after eating meals I get pain and pressure, and shortness of breath. sometimes so bad I feel like I will pass out, and actually did once.

same things the GI ruled out pancreatitis and gall bladder. last year I started getting pain around my ribcage, dr called it costrochondritis.

it is getting better slowly, less episodes. never knew about porphyria, but I saw on mystery diagnosis if you put yoru urine in a clear plastic cup, and put it outside it will turn purple if you have porphyria. I never tried it tho.

Posts: 615 | From maryland | Registered: Oct 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-

RE: mystery diagnosis if you put yoru urine in a clear plastic cup, and put it outside it will turn purple if you have porphyria "

NOT ALWAYS TRUE

That is called "The Poor Man's Porphyria Test" and it's NOT accurate for all types.

If that happens, it points to it, but there are MANY types of porphryia and not all affect the urine. Blood and stool must be analyzed, too.

And, there are other conditions - foods and drugs - that can cause color changes in urine.

Also, of the porphryia types that can result in dark urine, depending upon the TYPE, the urine may be different colors.

- and note that porphyria can be managed by diet and avoidance of certain foods, drinks and chemical exposure - and a toxin-binding protocol. Charcoal is frequently used. (natural, not synthetic) Beta carotene can be a life saver, too.

LEAFY GREENS (and greens powders) are a good source of beta carotene, too.

I'd like to see the porphryria experts look more at Chlorella and Spirulina, etc. too. I think the greens are grand. Lots of beta carotene in those, too. Plus you get nutrients. It's my preferred choice. I use "Green Vibrance" by Vibrant Health.

Kyo-Green is another that some might consider, although it contain potato and it's not clear on the source. It does not say organic or non-GMO.

more in the outlined links in above post.
-

[ 11-03-2009, 01:03 PM: Message edited by: Keebler ]

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.