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» LymeNet Flash » Questions and Discussion » Medical Questions » what type of M.D. tests for porphyria

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Author Topic: what type of M.D. tests for porphyria
pugs
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My PCP is willing to work with me and mostly any specialist (except llmd) is covered my insurance plan.

What M.D. checks for porphyria? My PCP admits he is not knowledgeable enough. thanks.

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Keebler
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First, think back to your biological relatives. If any were sensitive to medicines, trouble processing alcohol or red meat, GI troubles &/or mood swings when the GI stuff would hit hard . . . those are clues for a possible genetic type.

There are many kinds of porphyria and various levels, too. Gentic porphyrias are seen as a liver disease. Acquired (or secondary) porphyria is not a well-accepted idea by some liver specialists, so be aware of that.

A LIVER SPECIALIST sent my tests to Mayo years ago. But you need one specifically knowledgeable. Few are. Also know that no porphyria test can rule it out. Unless you are having an acute attack at the time, the tests can look fine.

It is not enough to test just urine. And, when so, special methods much be employed. However, not all porphyrias show up with a urine test. Blood and stool collection also must both be tested.

However, one LLMD is seeing a high percentage of lyme patients with one kind of porphyria, KPU (or HPU) and that is one for which a urine test can work. Mine two kinds of genetic porphyria would not test with just urine alone, so don't assume that lyme patients would have only one type, it can be any kind, it's just that KPU/HPU is a good place to begin.

For testing with regular procedures, with lyme, our tests may be elevated but not off the charts. Most liver doctors who work with porphyria want to see the numbers off the charts.

You need someone to understand the significance of even "just" elevated porphryins. I'm glad the liver doctor I went to did, but others who looked at his write up just went running out of the room, discounting his work-up on me.

A doctor who works with MCS would be likely to know more. I'll post a link about that, too. Most who have porphyria also have MCS, multiple chemical sensitivities.

I'm glad you have a PCP willing to work with you.

You can read more about testing and connect with some doctors through these sites. You can also call them with questions but they may not be familiar with the concept of secondary porphyria :

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

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)

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

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/87840?

Topic: Porphyria (discussion thread - as relating to lyme)

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

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

and here, too:

http://planetthrive.com/2010/04/hpukpu-protocol-for-lyme-and-autism/

HPU / KPU Protocol - Planet Thrive

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

Also for lyme patients, 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

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

www.multiplechemicalsensitivity.org

What is Multiple Chemical Sensitivity? (MCS)

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

http://ciin.org/

The CHEMICAL INJURY Information Network (CIIN)
-

[ 12-22-2011, 04:38 AM: Message edited by: Keebler ]

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Keebler
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After reading the article on "Secondary Porphyria" it's good to consider the elements of a herx (posted below). Whether a genetic porphyria is present or not, elevated porphyrins can make anyone miserable.

And that is why all the push for LIVER SUPPORT. It helps the liver go through stressful times and that, in turn, can help keep porphryins from reaching dangerous levels.

The liver can be damaged by lyme and other infections (and even by medications) so that is why liver support is so vital (i.e. Milk Thisle). You can attend to liver support and even measures to keep porphyrins down without actually being tested. Beta Carotene is the number one helper.

If you have a genetic porphyria, though, it would be important to know but tests can be very tricky.

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

http://en.wikipedia.org/wiki/Herxheimer_reaction

Herxheimer reaction

The Herxheimer reaction (also known as Jarisch-Herxheimer or Herx) occurs when large quantities of toxins are released into the body as bacteria (typically Spirochetal bacteria) die, due to antibiotic treatment or rapid detoxification.

Typically the death of these bacteria and the associated release of endotoxins occurs faster than the body can remove the toxins via the natural detoxification process performed by the kidneys and liver.

It is manifested by fever, chills, headache, myalgia (muscle pain), and exacerbation of skin lesions.

Duration in syphilis is normally only a few hours but can be much longer, up to months or years, for other diseases, especially Lyme Disease. The intensity of the reaction reflects the intensity of inflammation present.

The Herxheimer reaction has shown an increase in inflammatory cytokines during the period of exacerbation, including tumor necrosis factor alpha, interleukin-6 and interleukin-8.[1][2]

The reaction is also seen in other diseases, such as borreliosis (Lyme disease[3][4] and tick-borne relapsing fever[5]), bartonellosis, brucellosis, typhoid fever, Myalgic Encephalomyelitis, and trichinellosis, Q fever, and cat scratch disease.[6][7]

. . . much more at link above.

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

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

PubMed Search for Medical Abstracts:

Herxheimer Reaction - 233 abstracts

Especially note herxheimer abtracts with Leptospirosis, another spirochetal infection.

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

You will find LIVER SUPPORT links 3/4 of the way down this page:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=065801

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

Please save all links and notes above to a file on your computer for reference. Good luck.
-

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Keebler
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Because lyme is just so very toxic, that is why it may cause a rise in porphyrins for many patients. This article may help shine some light on the toxicity connection:

www.townsendletter.com/FebMar2006/lyme0206.htm

From the Townsend Letter for Doctors & Patients, February/March 2006


BIOCHEMISTRY OF LYME DISEASE: BORRELIA BURGDORFERI SPIROCHETE / CYST

by Prof. Robert W. Bradford and Henry W. Allen

EXCERPTS:
. . .

A discovery of great importance relating to a toxin produced by the causative agent of Lyme disease, Borrelia burgdorferi, has been linked to a similar toxin produced by the organism Clostridium botulinum (botulism). . . .

[extensive explanation of:]

* Lyme Disease Toxin . . .

* Action of Toxin . . .

* Dietary Supplements in Lyme Disease . . .

. . . .

- Full article and great photos at link above.

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

NOTE OF CAUTION: While this is an excellent article regarding the information about the spirochete/cyst, there is one serious caution with one of the treatments suggested: Bismuth.

Bismuth, in various forms or methods of use, can (and has been) fatal. So, cross that off your list. If you download the article, please copy and paste this note to top your page.

Reading - and learning - about the nature of this infection is invaluable. The authors offer much in that regard, I just wish they'd adequately cautioned bismuth.

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

This site details some of Jerigan's work discussed in the article above. Many lyme patients have seen some success with some of the methods here:

http://hansacenter.com/

HANSA CENTER
-

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Keebler
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There is also another similar matter to consider: Methylation

TerryK has great detail on that. I need to rest but will be back to post some of her links about that - or, hopefully, others will be along to post the Amy Yasko links - or just search by her name. She is a doctor who works with liver issues. Not sure if an ND or MD but her name should bring up a link if you cross search with the term "Methylation "
-

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pugs
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Keebler I think you knnow more than all my doctors combined. [Smile]

I'll check out all your links and probably print some of the articles for my doctor. Looks like I'll have to start educating myself more too!

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lightparfait
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Its a simple urine test...you can get it done yourself. I forget the labs name, but I think Scott , www.betterhealthguy.com has the labs posted on his site I heard and some info on it. Look for his KPU talk at Lymelighters...it has very easy to understand info.

You can print it out and take it to your MD or fax it the him...and see if he will run the test for you.

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Keebler
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Urine tests are not adequate for all kinds of porphyria - only for a few. While urine and KPU/HPU maybe be a good place to start, to diagnose other types of porphyria requires testing of blood and/or stool. More at the organizational links above.

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

KPU (Kryptopyrroluria) is just one consideration in the neighborhood of porphyria that seems to have importance regarding patients with lyme, autism and those who have issues with heavy metals:

In addition to the link posted by lymeparfait, this will take you right to Scott's KPU article:
----------------------

http://www.publichealthalert.org/Articles/scottforsgren/2Klinghardt.htm

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

-by Scott Forsgren

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

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

KLINGHARDT's KPU PROTOCOL

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

While the KPU test can be very helpful, the urine test does not test for all kinds of porphyria. Still, it's a good place to start - and it can save you lots of hassles.

Just because one kind of porphyria is found, though, that does not mean a patient may not have another kind - a kind that blood or stool would be needed for testing. If you suspect genetic porphyria, be sure to look at the big picture.

However, if one is dx with KPU/HPU and deals with that, the measures will also result in lowering porphyrins all the way around so that any other kinds of porphyria that might also be involved would also be less likely to rev.
-

[ 07-20-2010, 05:30 PM: Message edited by: Keebler ]

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Keebler
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-
http://www.dailystrength.org/c/Porphyria/support-group

PORPHYRIA SUPPORT GROUP online
-

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Keebler
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Just as important as avoiding drugs on the porphyria "unsafe" list are avoiding those on the Ototoxic lists - and they are often the same drugs. Generally, if a drug is toxic to the ears, it will also be toxic to the liver &/or kidneys.

There are at least 743 drugs that are known to be ototoxic. Here are just 84 of them:

http://www.hearinglosshelp.com/articles/ototoxicupheaval.htm

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

http://tinyurl.com/yhdw78n (through Amazon)

You can look inside this book and read customer reviews here:

Ototoxic Drugs Exposed: Prescription Drugs and Other Chemicals That Can (and Do) Damage Our Ears

- by Neil G. Bauman

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

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=065801

Regarding lyme: EAR / VESTIBULAR thread (with liver support links)
-

[ 11-05-2010, 01:39 PM: Message edited by: Keebler ]

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Keebler
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A note from TerryK:

. . . according to the authors of the first paper 100% of people with Acute Intermittent porphyria have KPU.

KPU is actually a misnomer, it should be called HPU or the mauve factor.

DISCERNING THE MAUVE FACTOR, PART 1

http://www.hearingvoices.org.nz/attachments/071_Discerning%20Mauve%20Factor%20Galley%20Feb%202008.pdf

---

DISCERNING THE MAUVE FACTOR, PART 2

http://www.docstoc.com/docs/29236263/DISCERNING-THE-MAUVE-FACTOR-PART-2/

Here are links to some of the sites that sell plant stem cells.

This is [TerryK's] first choice for plant stem cell therapy. The company is called Plant Stem Cell Nutrition (PSC). They make full plant extracts, not diluted. Apparently this makes them very powerful. These are only available through practitioners.

http://www.plantstemcells.net/

Plant stem cell therapy

---------

These are also full strength and if your doctor e-mails them, they will allow you to purchase them:

http://www.gemmos-usa.com/

-

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f13girl
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My mother has GI/FMS/CFS.IBS issues- a strange rash on her neck that never goes away-sensitive to alchol etc etc- I'm guessing she has porphyria-

I've had horrific reactions"herx"s to first some herbs for lyme and now my first heavy duty pharmecuticals in over 12 years- and in hell now /life is not bearable as a result-I'm also chemically sensitive-

Question is= can porph's treat for lyme ? or will the drugs/herbs etc. just aggravate the porph sending into an autoimmune cascade /like I'm in now?

I also test IGG positive for CVM,CPN, HHV6, mycoplasma pneu., and active EBV. I show liver phase I/II detox issues-- and also have some defect/2 enzymes on a methylation/b12 test that indicates I may not absorb 12-

As a result of taking a few drugs and downward spiral in November- I now have severe neuro symptoms-numbness everywhere almost, jerking, twitiching total insomnia,unberable nerve pain and stuff going on in head/brain/eyes, gait, balance, coordination, burning etc etc etc ( I did not have 90% of this in november before my crash-altough I had some symptoms and was declining)

Are there others out there like me with chemical sensitivites and all these other issues that have treated successfully with abx? I'm terrified given the cascade the drugs put me in (flagyl/diflucan fungal cleanse-hairbrain idea of mine not by doctor-autism docs use this).

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f13girl
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This began as "fibro" 12 years ago, optic neuritis /with some vision loss in 2006 -

No lesions and pass MS physical type tests so docs say it is not MS.

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f13girl
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Also drugs interfere with my sleep cycle-I totally stopped sleeping 5 nonths ago and sleep meds are working-forgot to add that-wondering if porphs also have sleep issues> my sleep cycle has been very sensitive my entire life.
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Keebler
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-
f13girl,

"Question is= can porph's treat for lyme ? "

Absolutely. Infections MUST be addressed or porphyria will be much worse.

A: "Are there others out there like me with chemical sensitivites and all these other issues that have treated successfully with abx?"

Absolutely. Many lyme patients have MCS. MCS often clears when the infections are adequately addressed.

However, treating lyme is MUCH more than just addressing infection. HEAVY METALS must also be addressed. LIVER SUPPORT and ADRENAL SUPPORT are also key to successful treatment and safety.

See the Klinghardt radio interview in the complementary list below. Listen to that first.

f13girl, it's best to consult an ILADS-educated LLMD. No one can possibly know enough to offer you specific advice for how to proceed.

Sleep drugs are especially hard on the liver. So is acetaminophen. There are other choices.

I see that you posted this in a recent thread:

"Does Dr. H have experience with patients like myself? Have an app't with him for May 5. "

Good. I'm glad to see you have a good LLMD. I hope this works out well. You might also ask if he knows of a good LL ND (naturopathic doctor) or LL L.Ac. (acupuncturist) as either would have years of formal education in the field of herbal medicines and nutritional supplements.

At least, be sure to ask Dr. H. for a list of suggested readings so that you will better understand the path ahead.

Good luck.

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

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=020605

MAKING THE MOST OF YOUR LLMD VISIT

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

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/89790

Topic: NATURAL SLEEP - Links to articles & supplements
-

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Keebler
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f13girl,

Links here to information and bulletin boards for some of the other infections you mentioned. Be sure to take all those tests with you to the LLMD for your appointment on Wednesday.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=069911#000000

TIMACA #6911 posted 03 August, 2008

I would encourage EVERY person who has received a lyme diagnosis to get the following tests.

- at link.
-

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Keebler
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This set compares and contrasts the work of authors regarding complementary methods.

Most incorporate allopathic with naturopathic but, of course, each patient would be treated according to his or her own situation. This set is just for reference. Then discussion with one's LLMD can take off from here.

It is not a complete list but one that is fairly representative. (Cowden protocol is another whole area that can be found easily with a Google search and with a search of the archives for past threads.)
--------------------------

http://www.lymepa.org/html/dr__j__burrascano_september_20_0.html

Burrascano's Powerpoint SLIDE presentation 9-20-08

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

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

Advanced Topics in Lyme Disease (Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses

Dr. Burrascano's Treatment Guidelines (2008) - 37 pages

------------
As important as any supplements, sections regarding self-care:

Go to page 27 for SUPPORTIVE THERAPY & the CERTAIN ABSOLUTE RULES

and also pages 31-32 for advice on a safe, non-aerobic exercise plan and physical rehabilitation.

----------------------
This is included in Burrascano's Guidelines, but you may want to be able to refer to it separately, too:

http://www.lymepa.org/Nutritional_Supplements.pdf

** Nutritional Supplements in Disseminated Lyme Disease **

J.J. Burrascano, Jr., MD (2008) - Four pages

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

http://www.lymeinducedautism.com/images/Lymewhat_is_it_part_3,_LIA.pdf

LYME DISEASE Considerations in Diagnosis and Management

June 26, 2008 Lyme-autism Connection Conference

125 pages - Powerpoint presentation

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

Chapter 1 from the book "Insights Into Lyme Disease Treatment"

http://www.lymebook.com/steven-harris

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

Through Amazon, see main link to the left on this page.

Insights Into Lyme Disease Treatment: 13 Lyme-Literate Health Care Practitioners Share Their Healing Strategies

Connie Strasheim (Author), Maureen Mcshane M.D. (Foreword), Thirteen Lyme-Literate Doctors (Contributor)

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

http://www.klinghardtneurobiology.com/LymeProtocolOct09.pdf

A Treatment Guide: Lyme and other Chronic Infections

by DKt, MD, PhD

October 2009 - 87 pages

-----------

http://www.klinghardtneurobiology.com/popups/PC1.html

Online Radio Interview with Dr. K

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

Important information about treatments options and support measures, supplements and self-care:

http://tinyurl.com/6lq3pb (through Amazon)

THE LYME DISEASE SOLUTION (2008)

- by KS, MD

You can read more about it here and see customer reviews.

Web site: www.lymedoctor.com

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

http://tinyurl.com/5vnsjg

Book: Healing Lyme: Natural Healing And Prevention of Lyme Borreliosis And Its Coinfections - by Stephen Harrod Buhner

website: http://planetthrive.com/2009/08/buhner-healing-lyme-program/

-----
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/86857

Topic: Buhner Healing Lyme Q & A links have changed

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

http://tinyurl.com/5drx94

Lyme Disease and Modern Chinese Medicine - by Dr. QingCai Zhang, MD & Yale Zhang

web site: try www.sinomedresearch.org and use "clinic" and then "clinic" for the passwords or call Hepapro through www.hepapro.com

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

www.lyme-disease-research-database.com/lymenutritionfile1_files/Integrated-Approach-DAN.pdf

HEALING LYME DISEASE: An Integrated Approach to Curing Chronic Infection

DKr, M.D. (2004)

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

http://www.dancingviolets.com/media/pdf/LymeDisease.pdf

Chronic Lyme Disease and Co-infections: Clinical Overview (Rebecca Snow)

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

http://www.steveclarknd.com/LymeDisease.htm

Your Path to Wellness (Clark)

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

From Bea:

This is a very good overview of lyme and coinfections and includes some case examples and herbal formulas of a treating herbalist.

http://tinyurl.com/yh6w892

Note -- The document is 81 pages long so it may take a couple of minutes to load.

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

RIFE

http://www.lymebook.com/lyme-disease-rife-machines-bryan-rosner

Book: Lyme Disease and Rife Machines by Bryan Rosner

--------

Also look at YouTube for videos about RIFE.
-

[ 09-25-2010, 01:35 AM: Message edited by: Keebler ]

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Keebler
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Glucose is an emergency treatment during a porphyria attack. In some cases, a glucose IV is necessary and it can save a life.

For times not quite that serious, Beta Carotene is also an emergency treatment for porphyria attacks (and helps to prevent them). Greens powders have lots of beta carotene. There are many on the market and I'm sure I've tried them all. Green Vibrance has worked the best for me.

Green Vibrance comes in a canister but also in very nice single serving packets. Just add to water. This stuff has saved my life many times, too. I cannot recommend it highly enough.

However, anyone with any kind of porphyria should consult their doctor as to if this would be enough to pull them out of an emergency -- or for on-going management to keep porphyrins at a manageable level to prevent emergency.

It should be excellent for rehydration. The ingredients in this are fantastic and most are organic. It has enzymes, probiotics and liver support herbs, too.

http://www.vibranthealth.us/?p2=/modules/vibranthealth/products.jsp&category_id=52

Green Vibrance Canisters, capsules, packets, meal bars

This is the manufacturer's site - to read all about it and see ingredients. You can also find this elsewhere (for better prices).

-----
http://www.vibranthealth.us/?p2=/modules/vibranthealth/product.jsp&id=32&category=52

GREEN VIBRANCE Packets. Clink on the tab for Ingredients.

Also comes in a canister, capsules and a meal bar.
-

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Keebler
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Regarding use of a sauna - and other strong detox methods - here's a post from another thread (about sauna use) that is relevant here:

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

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/96151?

GiGi posted this reply:

If you think of using sauna, make certain you do not fall into AI category - allergic to most stirred up toxins at DNA level and that you do not fall into the KPU category before you start mobilizing.

Majority of Parkinsons, ALS, MS have a problem with KPU and detoxing is totally inadequate and miserable and causing further damage if body cannot regulate any longer and the Autonomic Nervous system has all but collapsed.

Don't do it - you are damaging yourself. The majority of Lyme patients have both problems - Dysregulations/Allergies plus Leaky Gut and Krytopyluria aka KPU/HPU.

Dr. K. used to own a sauna. I know he has not used it in many years. Quotations from seminars should not be taken out of context. To everything he says, the words, "under certain conditions" should always be added.

Sauna and most detox efforts are a bad experience longterm, if you have any of these two problems - any detox efforts are stymied and a waste of energy. You are simply playing merry-go-round and moving toxins anyplace but out!

Please read any of the threads here discussing KPU and Allergie Immun.

A sauna is great under the right conditions - but not if you have major allergies, i.e. your body is no longer able to regulate, your immune system can no longer recognize damaging toxins and if you fall into the KPU category lacking major detox minerals.

Take care.

P.S. the fact that I repeated myself several times here should tell you how i m p o r t a n t
this subject is! "

(GiGi)

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

I would add to GiGi's caution the same thing regarding any form of porphyria - even if "Secondary" - see post above. Proceed with caution when designing or implementing a program to help your body metabolize and move out toxins.

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

http://www.allergie-immun.de/Englisch/

Allergie-Immun website

--------
To search archives for past LymeNet Threads:

http://flash.lymenet.org/scripts/ultimatebb.cgi/ubb/search

Search for keywords in subject line of medical forum: 'Allergie-Immun' | 9 matches found
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[ 07-03-2010, 01:25 PM: Message edited by: Keebler ]

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massman
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So is the KPU protocol primarily a remineralization process ?

I had copied a list of specific minerals into my PDA, but the PDA swam in a large full coffee cup for 30 seconds as I rescued my laptop from another spill at the same time. Bye bye PDA.

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Keebler
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GiGi just posted this at another thread:
-----------------------------

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/96380

Topic: Defective Enzymes and KPU

------
http://www.klinghardt.org/ning/KPU09PX.pdf

Here is the explanation of KPU aka HPU and protocol.

Defective Enzymes are dealt with and eliminated by the Allergie Immune therapy.

www.allergie-immun.de (English version)
(also look at some of "Allergy Immun Germany" thread running here)

When your immune system is able to regulate again by doing Allergie Immun, detoxing is much easier and crashing is avoided

(GiGi)
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Tonglen
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If you have mcs, need to be careful of abx and tinctures with alcohol. Try to test them beforehand and see if you are allergic. Avoid meds with colorants and preservatives. You may need to have meds specially compounded to avoid these ingredients. Good luck!
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Keebler
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Adding to Tonglen's advice to avoid alcohol in meds/tincture -- and dyes in medicines, also avoid additives in foods and beverages.
---------------------

[No mention of this, but these are also used in pharmaceuticals.]

http://pagingdrgupta.blogs.cnn.com/2010/06/30/food-dyes-a-health-risk/?hpt=Sbin

June 30th, 2010 - CNN Health ``The Chart''

GROUP URGES BAN OF 3 COMMON DYES

The Center for Science in the Public Interest (CSPI) says food dyes pose a number of risks to the American public and is calling on the Food and Drug Administration (FDA) to ban three of the most commonly used dyes:

Red 40, Yellow 5 and Yellow 6.

A new CSPI report says those dyes contain known carcinogens and contaminants that unnecessarily increase the risks of cancer, hyperactivity in children and allergic reactions.

"These synthetic chemicals do absolutely nothing to improve the nutritional quality or safety of foods, but trigger behavior problems in children and, possibly, cancer in anybody," said CSPI executive director Michael Jacobson, co-author of the report. "The Food and Drug Administration should ban dyes, which would force industry to color foods with real food ingredients, not toxic petrochemicals." . . .

. . . According to the report, tests done on lab animals found contaminants that raised health concerns about several of the nine dyes currently approved for market.

The approved dyes are Blue 1 & 2, Citrus Red 2, Green 3, Orange B, Red 3 & 40 and Yellow 5 & 6.

And every year, about 15 million pounds of these dyes wind up in our food, with alot of it ending up in things like candy, fruit drinks and cereals.

. . . Britain in 2008 . . . . For example, CSPI says McDonald's Strawberry Sundaes get their color from fresh strawberries. The group says in the United States the color comes from Red dye 40.

CSPI say in the UK, Fanta orange soda coloring comes from pumpkins and carrot extract. Here, it says the color comes from Red 40 and Yellow 6 dye. . . .
-

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Keebler
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JT's Mom just posted this great article at another thread. Very relevant:

http://www.pharmacytimes.com/issue/pharmacy/2008/2008-09/2008-09-8687

GET TO KNOW AN ENZYME: CYP3A4

- by John R. Horn, PharmD, FCCP, and Philip D. Hansten, PharmD

September 1, 2008

Excerpt:

In previous issues of Pharmacy Times, we have discussed the cytochrome P450 (CYP450) enzymes CYP1A2, CYP2C9, CYP2C19, and CYP2D6 (see www.PharmacyTimes.com/Drug Interactions).

In the spirit of saving the best for last, in this issue, we will discuss the most important of all CYP450 enzymes: CYP3A4. It has been estimated that CYP3A4 metabolizes about half of all drugs on the market.

Because many other commonly used drugs are moderate-to-potent inhibitors of CYP3A4, it is not surprising that drug toxicity of CYP3A4 substrates due to inhibition of CYP3A4 is relatively common.

CYP3A4 also is sensitive to enzyme induction, and a number of drugs are known to be CYP3A4 inducers. CYP3A4 inducers tend to lower plasma concentrations of CYP3A4 substrates, resulting in reduced efficacy of the substrate.

This type of drug interaction is probably more frequent than commonly realized, because reduced drug effect may simply be attributed to lack of patient response.

Many drugs that are CYP3A4 substrates, inhibitors, and inducers are also substrates, inhibitors, or inducers of the ABC transport protein known as P-glycoprotein.

Many drug interactions, therefore, involve additive effects of both CYP3A4 and P-glycoprotein.

- more text and several LISTS at the link above. -

** It would be excellent to save this to your computer file for easy reference.
-

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Keebler
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This is especially important for anyone dealing with any kind or any degree of porphyria or excess porphyrins.

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

http://tinyurl.com/2agvt28

CAN EXERCISE "POLLUTE" YOUR BODY ?

Health News - By VRP Staff

Believe it or not, toxic free radical molecules and oxidation by-products are produced whenever you exercise.
Everyone knows that exercise is related to improved muscle, heart and lung function... but it does have a downside, too.1-2

All of your workouts' positive effects begin with oxidative phosphorylation, a pathway that your body uses to generate energy (known as adenosine triphosphate or ATP) at the cellular level.

Unfortunately, this respiratory process--paired with your muscles' contractions and additional environmental factors like certain preservatives in foods and beverages, sun exposure and smog--produces by-products that pollute your body and lead to the formation of damaging free radicals.3

And studies show that this excess free radical exposure can pave the way to DNA mutations, premature aging and cell death, muscle weakness, fatigue and chronic oxidative stress.4-5

So how can you get the best benefits of regular exercise--without placing your body at risk in the process?

Proper antioxidant support is one effective way: Extensive research shows that safe, natural substances including vitamins A, C and E, N-acetyl cysteine, lutein, rosemary leaf extract, turmeric, green tea, bilberry and grape seed extract are all potent free radical quenchers . . . .

- Cont'd at link above.

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

In addition to antioxidant support, please refer up a few posts to Burrascano's guidelines regarding self-care and safe non-aerobic exercise recommendations.

Exercise is vital - it just needs to be the right kind in the right degrees.
-

[ 08-28-2010, 06:13 PM: Message edited by: Keebler ]

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sparkle7
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Thanks Keebler... When are you going to write a book? I'm sure it would sell well!
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Keebler
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Oh, I just saw your compliment, Sparkle. Thanks. Nothing I write is original, therefore, I could not claim discovery. There are MANY excellent books and article already out there. I just pass along bits and and pieces from a few that seem to ring a bell.

It's all I can barely do to just copy and paste. So, I'm glad to recommend links from good sources. Hope it helps others. I still don't understand everything, really. It's very complex.

And everything I find just leads me to more questions - it's all just bits of puzzle pieces. I'm glad to have a place like LymeNet were we can all come together and share. Here's to hoping we will find a few keys to unlock the puzzle.
-

[ 09-01-2010, 08:03 PM: Message edited by: Keebler ]

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Keebler
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Tryptophan and 5-HTP may look good, in general, but not for those with problems of porphyria metabolism

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

http://www.sciencemag.org/cgi/content/abstract/222/4627/1031

Science 2 December 1983:_Vol. 222. no. 4627, pp. 1031-1033

DOI: 10.1126/science.6648517

Science, Vol 222, Issue 4627, 1031-1033
Copyright 1983 by American Association for the Advancement of Science

L-tryptophan: a common denominator of biochemical and neurological events of acute hepatic porphyria?

DA Litman and MA Correia

Excerpt:

** . . . These findings suggest that increased tryptophan and 5-hydroxytryptamine in the nervous system may be responsible for the neurologic dysfunctions observed in humans with acute attacks of hepatic porphyria. . . . **

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

http://www.ncbi.nlm.nih.gov/pubmed?term=tryptophan%2C%20porphyria

PubMed Search: tryptophan, porphyria- 64 abstracts

Among those:

Biochem Pharmacol. 2008 Feb 1;75(3):704-12. Epub 2007 Oct 2.

Hepatic alteration of tryptophan metabolism in an acute porphyria model Its relation with gluconeogenic blockage.
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[ 05-23-2012, 11:50 AM: Message edited by: Keebler ]

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Lymetoo
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I have no idea if this was already posted...

Dr K in Public Health Alert

http://www.publichealthalert.org/pdf/2010_05.pdf

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

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Dawn in VA
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Guys and gals, what does an "attack" of such feel like/look like?

--------------------
(The ole disclaimer: I'm not a doctor.)

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jlp38
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Listening to the radio interview by Dr. K right now. He's loving this great new product called OSR which has since been pulled from the market. Love the FDA! Not.
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Keebler
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Dawn in VA,

A porphyria attack can be any neurological (or neuro-muscular) symptom but, most often, involves the gut with alternating cramping, constipation and loose stools.

An "attack" can be psychiatric, too, as the kind that hit England's King George III. But, any body system can bear the brunt. It may vary with the different kind of porphyria but it can also vary from patient to patient or from one time to the next.

It can be nearly indistinguishable from a herx and, IMO, some herx reactions ARE porphyria attacks or flares.

See the links above for "Secondary Porphyria" that relates some herx symptoms to elevated porphyrins and also see the Foundation/Association sites.

For those with some kinds of porphyria, an attack can be a very rough night, a trip to the E.R. or it can even become fatal. In such a case, IV Glucose and heme products can prevent that.

To keep from getting to an "attack" BETA CAROTENE is also very helpful. Green Vibrance (a greens powder blend) is my favorite support measure.
-

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Keebler
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jlp38,

Do you have a link for that program you were listening to?

This was on a few months back. Is it the same program?

---------
http://www.klinghardtneurobiology.com/popups/PC1.html

Online Radio Interview - one hour
-

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Keebler
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GiGi just posted this at another thread:
-----------

http://webcache.googleusercontent.com/search?q=cache:uablF1y5HXcJ:planetthrive.com/2010/04/hpukpu-protocol-for-lyme-and-autism/+kpu+klinghardt&cd=7&hl=en&ct=clnk&gl=us

Explanation of detox problems. Please listen to the whole video by Dr.K. covering KPU and then decide.
-

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Keebler
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More considerations regarding ability to detox:

* HLA-DR

I don't have details about HLA-DR and HLA-DQ but it's good to search that out.

Do a cross search of these terms at Google: HLA-DR "chronic neurotoxins"

One set of links from that search:

http://www.prohealth.com/library/showarticle.cfm?libid=8849

New Theory Links Neurotoxins with Chronic Fatigue Syndrome, Lyme, MCS and Other Mystery Illnesses - PART ONE

-by Patti Schmidt - November 29, 2002

http://www.immunesupport.com/library/showarticle.cfm/id/4291/searchtext/neurotoxins/

New Theory Links Neurotoxins with Chronic Fatigue Syndrome, Lyme, MCS and Other Mystery Illnesses - PART TWO'

------
http://sunshine35446.yuku.com/topic/2073/t/Dr-Shoemaker-and-tests.html

A bulletin board post explains a lot about these:

* MSH: (MSH is a hypothalamic neuroregulatory/cytokine regulatory/mucus membrane regulatory hormone.)
In short: MSH stands for "MELANOCYTE-STIMULATING HORMONE".

* MMP-9 is activated by cytokine effect

* PORPHYRINS

* The HLA DR by PCR is a typing of immune response genes, that can show individual susceptibility to particular neurotoxins.

Dr. S's tests can be ordered by your physician from Esoterix Labs. He must set up an account with them, you cannot do it: 



Esoterix Labs, Inc. 
7540 Louis Pasteur, Suite 200 
San Antonio, TX 78229-4008 
1-800-661-4118 


www.esoterix.com
-

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Keebler
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Don't be fooled by the title, this is for lyme patients, too:
--------

http://www.klinghardtacademy.com/images/stories/powerpoints/autism%20protocol%2009.pdf?chakra_shop=091fbfd82767a7016c134abeaf0114a2

FOUNDATIONAL PROTOCOL for AUTISTIC SPECTRUM DISORDERS

By Dr. K, et. al. 2009

pages that relate to either a herx or support enough for the body to help manage a herx:

p. 3: mitochondrial dysfunction

p. 28; p. 30 Detox

computers offgas
(two notes on cadmium: traffic and even organic grains)

p. 32 Detox: reducing toxic burden from vaccine adjuvants (also has a broader application)

* Never give Tylenol [acetaminophen] . . . (it reduces glutathione production and makes thimerosal more difficult to clear from the body) . . .

p. 36 & 37 - Rehydration Cocktail recipe

p. 38 - 39 Electrolyte recipes

p. 40 Magnesium


p. 68 Exit Routes (Kidneys; Liver/Gallbladder; Skin; Colon)

p. 69 Starts Toxin Elimination

p. 76 Supporting the Kidneys

p. 77 Liver support

p. 78 Natural Anti-inflammatories

p. 80 - 82 General Detox Support

p. 100 Lyme disease

p. 113 Minerals needed

** p. 124 - 127 Herx Support
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Keebler
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GiGi just posted this:

Don't miss addressing KPU. It is major.
------------------------------------

http://www.hputest.nl/evraag.htm

HPU/KPU Questionnaire
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Keebler
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As many with issues of porphyria may have to find alternate treatment methods &/or very particular support for Rx:

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

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/2/13964?

Topic: How to find an ILADS-educated lyme literate (LL) professionals in these areas:

Naturopathic doctor (ND); Acupuncturist (L. Ac.), a doctor of Oriental Medicine (O.M.D.), or a doctor of Ayurvedic Medicine (D.Ay.), certified herbalists or nutritionists, . . .

. . . Holistic MDs, and also Doctors of Osteopath (DO) and Doctors of Chiropractic (DC), etc.

** Includes many professional links, articles and books on complementary / integrative methods - & RIFE links -- all by LL authors.

Also included are basic links explaining the principles of herbal medicine.

BODY WORK considerations (geared to lyme patients) are discussed; with links.
-

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Keebler
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http://hnmrc.net/pd552897224.html?categoryId=27&gclid=CNTjxdyomKUCFRhCgwodRDieIw

Chinese Herbs for Porphyria

Hsin Kuang Herbal Store and Clinic (Est. 1956)- London, UK
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Keebler
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A note about LINKS

From time to time, links expire. As a collector of links, this drives me nuts when I'm wanting to go back to look for some detail.

I can't keep up with going back to links I've posted and updating them.

So, when you find research links that have evaporated into thin air, these actions can help connect you:

* Go back to the basics. Try the "guts" of that URL for a home page (usually the beginning part of the URL);

* search Google for key names; or key terms;

* copy and paste the article title, enclosed in quotation marks, or connected with the + symbol between each word.

-- Often, the new link will be an updated version. So, even if an old link goes through, it might be good to search to see if there is an update.

If you find new links for previous ones posted here, it would be so nice to post that detail for others.
-

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Keebler
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AnnieR just posted this elsewhere today.

Excellent collection of links from Dr. K:

http://andreannarainville.com/dr_klinghardt.html
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Keebler
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http://ciin.org/mcs.html

About MCS (Multiple Chemical Sensitivities)

. . . Disorders of Porphyrinopathy . . .

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

http://ilads.org/ilads_media/lyme-disease-videos/

3/4 of the way down:

IDENTIFYING ENVIRONMENTAL ILLNESS & MOLD EXPOSURE IN PATIENTS WITH PERSISTENT LYME DISEASE

Lisa L. Nagy, MD Video $15.

(Excellent to get, even if mold is not an issue, this is full of great information.)

She is NOT A LLMD, however, she understands the kind of toxicity issues faced by many with lyme. She did not have lyme but overcame very serious MCS. She spoke at the recent ILADS conference.

It's a great presentation to see. The DVD can be ordered. Great detail about toxicity issues also here:

http://lisanagy.com

Her Web Site
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Keebler
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Like the doctor above, a friend of mine has been forced to be out of her home for many months now. This is just one source that has helped her in her research as they are making their house safe:

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

http://marycordaro.com/blog/

Mary Cordaro's Healthy & Green BLOG

Safe Home for Health, Happy Families
-

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Keebler
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Anyone with any kind of porphyria should not be taking vitamins that are petroleum based.

I know some brands of vitamins are made in a laboratory but it never occurred to me that some are made from PETROLEUM until I read this article yesterday:


http://well.blogs.nytimes.com/2012/01/20/looking-inside-the-twinkie/

LOOKING INSIDE THE TWINKIE

By Tara Parker-Pope - The New York Times - January 20, 2012

Interview with food writer Steve Ettlinger, author of the book ``Twinkie, Deconstructed":

Excerpt:

. . .

Q. What ingredients used in Twinkies most surprised you?

A. Vitamins. I didn't have a clue where they came from, but I suspect that, like me, many people think that they are squeezed from seeds or extracted from bark or something like that.

I found they were, by and large, made from petroleum and fermented in enormous industrial plants mostly in China.

To find out that a lot of my vitamins, and in particular the B vitamins in enriched flour that are in a Twinkie, were made from Chinese petroleum just blew my mind.


Q. How do you get a vitamin from petroleum?

A. Like so many basic chemical processes, it's about breaking down a source material into its essential molecular structure.

If you want a lot of carbon or hydrogen or oxygen from an organic compound, petroleum is not a bad place to start. They manipulate it in various ways to get what they want.

For a chemical engineer, the source of the carbon or hydrogen or oxygen is not that important. It's about the availability and the ease of working with it.

For instance, with something like sorbic acid, which is a common preservative, at one point in the process they need a carbon source, so they hit it with carbon monoxide. I found that dismaying, for what is eventually a food product.

But the chemists kept telling me: ``It's just a chemical reaction. On your table you have two very dangerous chemicals, sodium and chlorine, but they've combined into table salt, which is benign.''

I had to work to shed my chemical-phobia. (end quotes by Steve Ettlinger) . . .

- Full article at link above -

---------
To my shock & deep dismay - this was pretty much the end of discussion about the petroleum derived vitamins. Big Sigh.

And, for all foods that are "fortified" my guess is that this is the source of the vitamins used.

Another Big Sigh.
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Keebler
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Katrina poses some good questions here:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=115527;p=0

porphyria
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aperture
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Keebler,

I cannot read and understand alot due to brain fog. However, I was looking at the porphyria foundation website and could not figure out what those disorders are.

Over the years, my Dr has been suspecting that I have a CYP450 2d6 enzyme deficiency that makes it hard to metabolize medications properly. Is that porphyria?

--------------------
aperture

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Keebler
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Aperture,

you say: ". . . Over the years, my Dr has been suspecting that I have

a CYP450 2d6 enzyme deficiency that makes it hard to metabolize medications properly.

Is that porphyria?" (end quote)


Sure does sound like it. Porphryia encompasses the entire CYP450 (Cytochrome P-450) enzyme pathway (also referred to as the primary liver detox pathway) . . .

that your doctor has given it more thought to your reactions regarding the 2d6 "sub-category" of the CYP450, he probably knows far more about this than do I.

It's good that your doctor has his eyes open and his brain engaged. Often, the best diagnostics emerge from observation.

Your blood relatives should be alerted in case this might be of genetic origin. Your doctor will know more, I suspect.

In any case, self-care methods are the same.
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Keebler
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Some of these links are peppered throughout posts above. However, here's a somewhat streamlined collection:


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030792;p=0

LIVER SUPPORT LINKS & and several HERXHEIMER support links, too.
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Keebler
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http://www.cpnhelp.org/reactions

From Cpn Help site

Reactions to Treatment: Endotoxins, cytokines, porphyria, etc.
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Keebler
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Re: Porphyria & Anesthesia

In today's news:


http://www.sciencerecorder.com/news/anesthesia-drug-etomidate-may-increase-risk-of-mortality-cardiovascular-events/

Science Recorder | Jonathan Marker | Friday, December 13, 2013

Anesthesia drug, ETOMIDATE & Mortality issues

According to a December 13 news release from Wolters Kluwer Health, a recent study appearing in the December issue of Anesthesia & Analgesia

(“Etomidate and General Anesthesia: The Butterfly Effect?”) identified the widely-used anesthesia drug

etomidate as a safety concern for patients receiving the drug during surgical procedures, because the drug may increase the risk of mortality or cardiovascular events. . . .

full article at link above.

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

Wondering if there may be a porphyria connection, it seems so:

Excerpt, page . . . [top of page 10] Etomidate is porphyrinogenic in animal models.[46] . . .

[Reference: 46. Harrison GG, Moore MR, Meissner PN. Porphyrinogenicity of etomidate and ketamine as continuous infusions. Br J Anaesth 1985; 57: 420-423.]

http://anesthesiologyboards.com/pdfs/porphyria.pdf

22-page pdf:

Anesthetic Considerations in Porphyrias [Jensen, Fiddler, Striepe]

From page 9:

B. Induction of anesthesia

Thiopental has accounted for the majority of drug-precipitated attacks(15, 35) but the
multifactorial nature of porphyric crisis makes interpretation of isolated cases difficult. (18)

Since dehydration, infection, fever, and endogonous steroid hormones themselves induce ALA
synthetase, virtually any drug administered to a patient entering a porphyric crisis implicates
that drug as a "trigger".(18)

Interestingly, even a known trigger may not induce an attack. (5, 44) . . . .

Full article at link above.
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TNT
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f13girl.....

How are you doing now??!! I hope much better. If you still visit Lymenet, please come back on. I have had an almost identical reaction. You describe me the best that anyone has so far!

You wrote:
"As a result of taking a few drugs and downward spiral in November- I now have severe neuro symptoms-numbness everywhere almost, jerking, twitiching total insomnia,unberable nerve pain and stuff going on in head/brain/eyes, gait, balance, coordination, burning etc etc etc ( I did not have 90% of this in november before my crash-altough I had some symptoms and was declining)

Are there others out there like me with chemical sensitivites and all these other issues that have treated successfully with abx? I'm terrified given the cascade the drugs put me in (flagyl/diflucan fungal cleanse-hairbrain idea of mine not by doctor-autism docs use this)."

Did you get help from Dr. H?

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Keebler
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TNT,

The last post by f13girl was May, 2010. You might Google that screen name and see if the same poster is on another discussion board. That sometimes happens.

And you might find TF as she treated successfully, after some searching, with a full protocol that was strong enough after other weaker programs failed. And it took her just one year once she finally found a LLMD with enough skill.

Still, for some with MCS / Porphyria or drug sensitivities, I suggest exploring RIFE along with key support supplements.
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Keebler
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http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=117755;p=0

Topic: RIFE Machine - Reference LINKS

LL Naturopathic links here, too, for solid guidance for support methods along with rife.
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Keebler
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As there are at least eleven variations of PORPHYRIA - and maybe more - glucose may be helpful in more types than those listed here.

http://www.porphyriafoundation.com/about-porphyria/diet-and-nutrition/the-glucose-effect-in-acute-porphyria

American Porphyria Foundation

THE GLUCOSE EFFECT IN ACUTE PORPHYRIAS

The disorders

Acute Intermittent Porphyria (AIP),

Hereditary Coproporphyria (HCP),

Variegate Porphyria (VP) and

ALAD Porphyria (ADP)

are treated initially with the administration of carbohydrate/glucose.

This therapy has its basis in the ability of glucose to decrease porphyrin biosynthesis in the liver.

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.

Therefore, it is suggested that when patients cannot consume carbohydrates due to nausea or vomiting, glucose should be administered intravenously.

Some physicians have prepared a standing order for patients who are prone to attacks to help facilitate intravenous glucose in the emergency room.

Often this prevents further hospitalization
Most patients are knowledgeable about the deleterious affect the wrong drug can have on their bodies and are consequently careful about the medication they ingest,

but some do not understand the

importance of carbohydrates for prevention and treatment of a Porphyria attack.

Because it is a simple therapy, many patients ignore the significance of their carbohydrate (sugar) intake to suppress disease activity.

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.

-----

ALSO SEE DETAIL IN previous posts about SPIRULINA.

Search at Google and also at YouTube for: porphyria, spirulina

--

& for those with concerns about how to manage candida if you also require some dietary glucose:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/115457?#000000

OLE Links
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[ 06-13-2017, 08:43 PM: Message edited by: Keebler ]

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Keebler
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Porphyria related Seizures - help with Magnesium:

https://www.ncbi.nlm.nih.gov/pubmed/1915181

Epilepsia. 1991 Sep-Oct;32(5):712-5.

Treatment of porphyric convulsions with magnesium sulfate.

Sadeh M1, Blatt I, Martonovits G, Karni A, Goldhammer Y.
Author information (at link)

Abstract

We report a 16-year-old girl with acute intermittent porphyria who had abdominal pain, generalized tonic-clonic and simple partial seizures, and inappropriate antidiuretic hormone secretion.

Because most antiepileptic drugs are contraindicated in porphyria, she was treated with magnesium sulfate i.v.

Soon after starting treatment, seizures stopped, returned, and then again responded in several trials with discontinuation and reinstitution of i.v. magnesium sulfate.

Our experience encourages the use of magnesium sulfate for treatment of seizures in patients with porphyria.


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=123746;p=0

Topic: MAGNESIUM - Informational Links set
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Lyme248
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I always thought I had some type of porphyria. I never got a test done though.

--------------------
chronic Lyme/Bartonella

Inside every sick person is a well person waiting to be freed

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