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» LymeNet Flash » Questions and Discussion » Medical Questions » Anyone have porphyria?

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Author Topic: Anyone have porphyria?
AZURE WISH
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if so what were your symptoms? did it give you mutiple chemical sensitivities?

what treatment helped?

who diagnosed and treated you?

thank you

--------------------
multiple chemical sensitvity group:
http://www.lymefriends.com/group/multiplechemicalsensitivities

Group for artists. All media welcome:
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http://groups.yahoo.com/group/Lyme_Artist

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Keebler
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There are at least 11 kinds of porphyria, even more depending on how that's being figured.

I have two kinds of what appear to be genetic porphyria (as per tests) - or it could have been brought on by lyme and other chronic stealth infections.

My mother could well have had porphyria. In retrospect, all signs certainly point to that. She died too young (age mid-50's in the early '80's) - long ago before I'd even heard of it.

Chronic Proto Porphyria and Chronic Variegate Porphyria are my dx -- but not every doctor agreed with the doctor who diagnosed me as many doctors do not believe that lower elevated levels matter. My tests were not done during an attack or they may have been higher.

Yes, I also have MCS.

I do like not like to talk about my symptoms for many reasons. Just too complex, too depressing and too exhausting to be categorized. It also serves little purpose for others and brings them down. I'd rather talk about what HELPS.

Dx include: (very late diagnosed) Borrelia; Babesia, HME (ehrlichia); Cpn; HHV-6; coxsackie B. Severe vestibular dx as well (Inner and middle ear), including some possible structural abnormalities.

As for my lack of success, while better in some ways, I have not been adequately treated for any of the chronic infections (it's just not possible in my state and with the state of my checkbook) but do the best I can with what I have.

So, sure, I have a ton of symptoms. But it's anyone's guess which ones go into which categories. I stopped that mind blowing exercise long ago. It's all part of the big picture and I do see how there is the very intricate dance going on - all things matter to all parts, so to speak.

TREATMENT - for porphyria ? The porphyria doctor retired years ago but his main advice to me:

Load up on beta carotene all day long. A bit of glucose, too (the need and complexity of that is addressed in the tread below. The 5 grams in one ounce of 85% dark chocolate seems the right amount for me. For those with candida, this gets trickier).

Treat infections but avoid C P-450 Rx (also tricky but certain liver support will allow some C P-450 Rx, if lucky).

Avoid all scents. Avoid diesel exhaust.

TESTING must be blood (drawn under darkness), urine and stool - all three.

My collection/samples were sent to Mayo Clinic (which, while they are terrible with lyme - do know more about porphyria but they also disagreed with my diagnosing doctor about the chronic nature of it).

I did have repeat testing done and all sets matched the previous ones. So my doctor was certain, along with symptoms. He believed that everyone with MCS has chronic porphyria of some kind. Again, most other doctors do not agree.

GENETIC TESTING is now available for just some kinds, not all. But NO testing is totally accurate, even the genetic tests are not perfected.

My treatment is mostly avoiding C P-450 drugs and taking in a lot of beta carotene and greens. I also focus on liver support and eating good complex carbohydrates, good fats - and lighter proteins (as red meat can be hard for those with porphyria but GRASS FED beef a bit easier).

Only organic food - it is absolutely necessary. Absolutely. No additives or dyes, etc. Nothing fake, just real food.

More detail here. See the "Secondary Porphyria" post first as it explains why EVERY lyme patient needs to be aware of elevated porphyrins.

Detail on KPU / HPU is also vital as Dr. K states about 80% of lyme patients deal with that and unless it's figured in, treatment for lyme is much harder and not as likely to succeed.

Exploring KPU / HPU may be all that is needed.
--------------------------

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/91842?

PORPHYRIA

Includes links from GiGi, Dr. K, and others about KPU / HPU (mauve factor) . . .

& links from TerryK regarding METHYLATION issues
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[ 01-23-2011, 04:10 PM: Message edited by: Keebler ]

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Energyman
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what are the symptoms of porphyria?
how does it get diagnosed?

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Keebler
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Energyman,

That is all explained in great detail with links to professional organizations, etc. - in the thread above.

Problems tolerating certain drugs, alcohol intolerance & exercise intolerance are major signs (but can also be from other areas of liver stress).
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AZURE WISH
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thank you for all the info Keebler [Smile]

the dr k link didn't seem to work .. but i had someone read to me the rest...intersting and helpful...

sorry I didn't mean to pry about your symptoms.

My pain is so bad i spend hours a day lying flat staring at the ceiling. my spine hurts so bad i cant sit ,read anything... head hurts so bad many noises are a kick in the head... and my mcs has me homebound and isolated (i have to put off dr appts even).. blah blah blah. so i guess i was just hoping to hear that it got better for someone else.

Do you happen to know if there is a list of ok med for porphyria. I know you said C P-450 drugs, but i havent a clue what that is.

--------------------
multiple chemical sensitvity group:
http://www.lymefriends.com/group/multiplechemicalsensitivities

Group for artists. All media welcome:
http://www.lymefriends.com/group/creativecorner


http://groups.yahoo.com/group/Lyme_Artist

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karenl
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I think if tested, most of us would have it.
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Keebler
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Karen,

Good point. I also think it's more fluid than doctors may think. I think anyone can have dangerously elevated porphyrins at times, even if they don't have a genetic porphyria. The total toxic load is seldom considered.


Azure,

No worries. I did not take your request about my symptoms as prying. It is a legitimate question but I just don't have the energy to "go there" - that's all.

Remember, though, there are MANY success stories. And there are MANY roads to success.

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

Q: "Do you happen to know if there is a list of ok med for porphyria.?"

The links in this porphyria thread contain lists for safe and unsafe Rx. Consult 2 -3 different lists as each has a some differences.

First, go straight to the links of the professional organizations and, then, also scroll down for other links that are very important.

You can also cross search most Rx on the web AND at PubMed ( http://www.ncbi.nlm.nih.gov/sites/entrez ) with terms such as: porphyria - or just: P-450, or P450. You have to use various terms to be sure.
----------

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/91842?

PORPHYRIA
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[ 01-31-2011, 08:31 PM: Message edited by: Keebler ]

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R62
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What do you all think about using CSM and or charcoal to absorb fat soluable porphyrin by products? I am reading about this on the CPN website.

Here is my recent post. I would appreciate any insights!

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/104104?

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R62
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up
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AZURE WISH
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Do you know if they make glucose pills. I looked on vitacost and don't see any.

--------------------
multiple chemical sensitvity group:
http://www.lymefriends.com/group/multiplechemicalsensitivities

Group for artists. All media welcome:
http://www.lymefriends.com/group/creativecorner


http://groups.yahoo.com/group/Lyme_Artist

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R62
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CVS has them in the store.
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chiquita incognita
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Hi Azure
I want to echo Keebler that there are many success stories and many ways to go about it.

I want to encourage you that I am a fully recovered MCS patient and have been for about 25 years. I can walk by passing cars, go into the grocery store detergent aisle, clean house, etc with ZERO symptoms. Previously I had instant MS-like symptoms immediately upon exposure.

My LLMD said that secondary porphyrins can also come from chlamydia pneumonia. He gave me a supplement regimen to do for the c pneumonia and if you are interested I will post it.

What cured me of the MCS was:

A) Candida diet

B) Strengthen thyroid and adrenal glands. Both aid healing powers and the adrenals play a major role in influencing allergic responses, if depleted. If strong then there will be much fewer allergies

C) Cleanse and strengthen the liver, this is just as important as adrenals in allergic states

D)All-organic foods diet, avoid chemicals like the plague, non-toxic housecleaning, aluminum-free deodorants and pots/pans, etc

E) Sunrider (company name) Chinese herbal products were ENORMOUSLY responsible for my recovery. They have changed and diluted the products since then but the dilution may only be good. The detox reactions were probably too strong previously. The Cali Tea, Fortune Delight tea, Prime Again (to balance endocrine glands, very important to recovery) and Conco (tonifies immunity) were very important too.

F) Leaky Gut Syndrome will surely cause MCS and neurological symptoms of all kinds, and how! Read more here, 7 physicians' articles linked to this one: www.americanchronicle.com/articles/view/154338

A naturopathic physician is the best-suited specialty for help with MCS. You can locate a ND here www.naturopathic.org

G) I recovered from MCS without even touching the lyme. Neurological symptoms mysteriously continued, we figured that out about 25 years later that it was lyme -related, but MCS disappeared.

It took a long time to recover after MCS treatment because we hadn't yet addressed gluten intolerance. Once that was addressed another layer of the onion was peeled, neurological symptoms much improved within an amazing one week (drastic, severe ones) and immunity beefed up a few months thereafter. Suddenly I wasn't getting so many colds and flus---I used to get sick every two or three months---and I could even tolerate medications that had set me off in the most miserable, MS-like way prior.

When the gut lining is sealed up as food allergies are avoided, lots of progress can happen.

There are many other causes for leaky gut too. See the article above, references physician's statements about causes et al.

Have you tried the New Chapter Organics product Headache Take Care ? It is wonderful. I know someone with severe migraines who it really helps.

I hope this helps you!

NOne of the above statements have been evaluated by the FDA. This information does not diagnose, cure or prevent any disease. THis is for your education only and does not substitute for a physician's personalized advice.

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chiquita incognita
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Here info about primary and secondary porphyria and what to do about it, with a nutrient supplement plan included (scroll down):

http://www.cpnhelp.org/secondaryporphyria

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chiquita incognita
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Hi Azure Wish
I am truly deeply sorry to read about the intensity of your aches and pains. You describe them so well, you should be a writer, FYI! You must have an artistic gift in this area....

Here is an article that made me think of you. It describes the back and head aches that come with hypothyroidism as influenced by a set of circumstances not described by most sources, and also not commonly recognized in mainstream medicine, according to the doctors in this article.

That is, the resistance to thyroid hormone uptake. Lab tests may come out normal, yet the cells are not receiving the thyroid hormone properly and hence the symptoms. Apparently thyroid hormone resistance is considered to be rare by endocrinologists and is usually overlooked, according to the doctors teaming up to do this article/attached youtube. And they have brilliantly balanced solutions to offer.

I don't know if this pertains to your case, but I thought this might interest you as something to check into. Sometimes it can be a combination of things going on. If you check into it and find that it is a factor, then as you address the various factors the layers of the onion are peeled and you can make better progress with the other matter which seemed so difficult to deal wtih previously. In fact, in his book Thyroid Power by Richard Shames MD, he specifically says that as thyroid issues are addressed, other conditions improve much more quickly thereafter.

Just a thought. This is not a diagnosis, only a question to be checked into with the right physician.

Check this out.

Best wishes, CI http://articles.mercola.com/sites/articles/archive/2011/02/26/dr-john-lowe-on-thyroid-disease-part-1.aspx

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AZURE WISH
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R62 - thank you for the glucose pill info.

chiquita - thank you for all the info and sharing your expereince. I already have been doing some of the things on your list, got rid and guard against yeast, avoid chemicals, cut out gluten, try to detox/help liver. one thing is i have suspected that my adrenals are all wonky so i will try to see how they are and adress that.

i will check out the herbs. I have to be careful not to take anything that may kill babesia because it only made me worse and is primarily how i ened up in the shape i am in.

I will check out all the links. that thyroid issue sounds interesting. If i get myself to the point i can see specailists maybe i will try to see an endocronlogist armed with questions and whatnot.

--------------------
multiple chemical sensitvity group:
http://www.lymefriends.com/group/multiplechemicalsensitivities

Group for artists. All media welcome:
http://www.lymefriends.com/group/creativecorner


http://groups.yahoo.com/group/Lyme_Artist

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chiquita incognita
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Hi Azure Wish
I surely empathize with the problem of over-response to healing substances (in the past, for me) and to those affecting glandular activity for you.

I hope your progress is such that it need no longer be a stumblingblock for you!

That said, let me also suggest that you read Dr Shames's book before seeing an endocrinologist. You will be armed with information that will guide you in the right directions, empowering you to make health-supporting decisions for yourself, in cooperation with your doctor. (Or better said, with his/her cooperation with you. If you are interested, see the book).

Yes low adrenals will create hyper-responses, FYI. And as above, thyroid can create some of the symptoms you posted, according to Dr Mercola's article I linked for you.

Here is how my LLMD says to go with a hyper-sensitive body:

Dosages. Go really, really slowly. He starts me on a sub-therapeutic dose initially ,just to acclimate the body, not to have any therapeutic effect in the beginning.

Take sub-therapeutic dose for about 1 or 2 weeks.

Then increase ever so slowly.

Finally you get to a therapeutic dose, and your body is acclimated.

I no longer have chemical hyper-responses but do "uptake" medications and their impact very rapidly with even the tiniest dose. Hence the necessity of this, for me.

Hope this helps you too. You could talk about this with your doctor. There also are methods of preparing a sensitive body to better cope with any healing substance and its effects. IE nutrient boosting, gut lining strengthening just as you have already done, etc.

FYI many things can cause leaky gut syndrome, above and beyond food allergies alone. Some medications can cause it, so can oxidants. This can predispose us to neurological symptoms, immune suppression or hyper-activity each alike.
Something to check into? Maybe.

This is not a diagnosis and I am not a doctor.

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