Porphyria......?

I've read several posts on Porphyria, including the interview with Dr. Stratton (I think is who it was).  I'm still left wondering what I can do to combat porphyria as I definitely have it going on and it's something I want to deal with.

As far as I know, the only thing that can be done is the following...

  • take activated charcoal in either powder or capsule form
  • wash it away with water
  • avoid eating protein / eat a diet consisting of 70% carbohydrate

Have I left out something?  I'm left wondering if there is anything that can be done medically?  Would a medical measure to address it also lead to other undesireable side affects?

take care

John

p.s.  signature not omitted intentionally

 Well, Basil, I was really just following your line of reasoning from the very detailed information you gave in response to Red. I'd never dug into the details of C450 and drugs in relation to porphyria before, although all the porphyria sites refer to drug triggers, until I read your explanation. The notion that the same enzyme might be required to process the porphyrins seemed just a next step in the chain of logic. So you think this might be the culprit? It would help explain that spiraling out of control you have described, and I see in my daughter when we've tried to treat her.

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 150mg INH, 200 Doxycycline, 500mg MWF Azithromycin, 500mg Tini daily (Continuous protocol)

 

CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Sometimes it needs more than one great brain to work things out. You both have them and are a good team, along the lines of the Stratton/Wheldon team... Keep it coming for the rest of us.

Jim, do you think this might be a good addition to the handbook?   I'll copy what I think is relevant, you can put me right with the science at a later date.. 

Michele (UK) GFA: Wheldon CAP1st May 2006 . 26th March 2007 continuous Flagyl at 400mg with 5 day pulses at 1200mg every three weeks. Spokesperson for Ella, RRMS Wheldon CAP 16th March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

Niacin stimulates the production of heme, how much are you taking?

http://tinyurl.com/2qq77u

and  not eating enough protein can affect the P-450 enzymes

http://tinyurl.com/38oguh

of course too much protein and too little niacin and you're screwed too, there must be a message here.......get your levels checked?

Elinor ..... from England  on CAP, doxy/roxi/tini  for ME/CFS/lyme borreliosis, positive Cpn and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

Elinor ..... from England  on CAP, doxy/roxi/tini  for ME/CFS/lyme borreliosis, positive Cpn and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

Unconvinced cynic - I think 'so what' when I read this thread, its fascinating hypothosis but is there any clinical evidence ?  Excess fat soluble porphyrins are not the norm as far as I understand this subject.  I suggest a diagnosis/test of these before any major changes in diet (except that reducing protein intake leads to a more balanced diet, especially in North America !) Water soluble porphyrins are best flushed away using lots of H2O (adding vit C could help).  So if you are going to update the handbook ensure balance - please let the reader know what percentage may experience porphyria, test required etc before issuing instructions.  ... Mark. 

Mark Walker - Oxford, England.     RRMS Nov 91, Dx 97. CFS Jan03. DW Patient Jan06. CAP (NAC, Dox, Rox) with Copaxone Feb06. Met monthly pulses, from Jun06. Pharma Consultant (worked til Jan03).

Mark Walker - Oxford, England.

RRMS Nov 91, Dx 97. CFS Jan03. Copaxone + continuous CAP (NAC, Dox, Rox) Feb06 to May 07. Met pulses from Jun06. Intermittent Abx from June 07 onwards.

Be as cynical as you like Mark, that in the end is what leads to knowledge. Constant questioning and reviewing information and thinking is what moves things on.

The information that I am gathering for the handbook is meant for a discussion chapter and will not include instructions about diet and supplements. This is best left in the place that it already occupies and as we know from all of our experiences, different people need different regimens.

I think it is important for discussions such as the one above should be kept in a place where people can refer and add to them easily, rather than lost in the mire of threads where it is much more difficult to find.

Michele (UK) GFA: Wheldon CAP1st May 2006 . 26th March 2007 continuous Flagyl at 400mg with 5 day pulses at 1200mg every three weeks. Spokesperson for Ella, RRMS Wheldon CAP 16th March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

Clinical evidence of just one person here......since cutting down on carbs and increasing protein (and therefore fat) I have not had ANY of the problems I had been experiencing with porphyria, is there  any evidence that dietary fat helps in processing porphyrins?  It's all relative though isn't it and maybe I wasn't eating enough before......one man's meat and all that........

Reducing protein would only lead to a more balanced diet if someone was eating too much in the first place, a blanket recommendation to cut down doesn't allow for individual requirements.

This guide to diet from the Canada Porphyria Foundation stresses that carb loading may only be needed during an acute attack and for the rest of the time an adequate intake of protein and fat is needed to balance the carb intake.

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

Elinor ..... from England  on CAP, doxy/roxi/tini  for ME/CFS/lyme borreliosis, positive Cpn and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

Elinor ..... from England  on CAP, doxy/roxi/tini  for ME/CFS/lyme borreliosis, positive Cpn and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

This makes me wonder if taking 4000 IU of D3 simply makes things worse. Is the increased porphyria due to Cpn dying? Or is it only making us feel worse?

Combined Antibiotic Protocol for chlamydia pneumoniae in fibromyalgia, interstitial cystitis, sinus: minocycline, Zithromycin, Flagyl

minocycline, azithromycine, metronidazole 2007-2009, chelation for lead poisoning, muscle pain, insomnia, interstitial cystitis (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (no longer hurt)

I had not tried cimetidine because my stomach doesn't digest. Food just sits there unchanged from when I chewed it for five or six hours. (I know this from my experience of Flagyl making me vomit.) Will taking betaine work with cimetidine? I think my sluggish stomach also stops charcoal from working as it should.I don't think it goes where it should when it should, but gets mixed up with food. Combined Antibiotic Protocol for chlamydia pneumoniae in fibromyalgia, interstitial cystitis, sinus: minocycline, Zithromycin, Flagyl

minocycline, azithromycine, metronidazole 2007-2009, chelation for lead poisoning, muscle pain, insomnia, interstitial cystitis (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (no longer hurt)

Red

Basil / Jim,

Along these lines, from Dr Stratton's patent:

"The diagnosis of chlamydial-associated secondary porphyria may be difficult as the porphyria may be minimal and tissue-specific. The measurement of 24 hour urine or stool porphyrins may not be sensitive enough in many cases of chlamydial infection to detect the secondary porphyria. Here, the diagnosis depends on the fact that if excess porphyrins are reaching the circulation, the precursor red blood cells will absorb these and make heme. Thus, the enzymes for heme biosynthesis in the differentiated red blood cell become elevated and remain elevated for the life of the red cell. This allows the diagnosis of episodic low-level secondary porphyria as is seen with chlamydial infections. Thus, elevated beme synthesis levels can be used to diagnose intracellular porphyria. See Example 7. "

http://www.patentstorm.us/patents/6884784-description.html

 

Could the excess porphyrins spilling out into circulation and causing precursor red blood cells (I'm assuming in the bone marrow) to make heme actually just help compound the problem with secondary porphyria (by the same method)? Also I read that the average life of a red blood cell is @ 120 days and that they are then scavenged by the liver again, (and I'm wondering , potentially just starting the cycle all over again?):

"Thus RBCs are terminally differentiated; that is, they can never divide. They live about 120 days and then are ingested by phagocytic cells in the liver and spleen. Most of the iron in their hemoglobin is reclaimed for reuse. The remainder of the heme portion of the molecule is degraded into bile pigments and excreted by the liver. Some 3 million RBCs die and are scavenged by the liver each second."

http://users.rcn.com/jkimball.ma.ultranet/BiologyPages/B/Blood.html

 

 

Hi Mark, fyi, from the same patent, Dr Stratton seems to be very concerned with elevated fat-soluble porphyrins:

"Activated charcoal can be daily administered in an amount sufficient to absorb fat-soluble porphyrins from the enterohepatic circulation. Treatment with activated oral charcoal, which is nonabsorbable and binds porphyrins in the gastrointestinal tract and hence interrupts their enterohepatic circulation, has been associated with a decrease of plasma and skin porphyrin levels"

And in fact in a little chat I had with him, he suggested that we Rosaceans likely may actually be suffering from a buildup of excess fat-soluble porphyrins in the skin, contributing greatly to our sun (and many types of light) sensitivities.

On Combined Antibiotic Protocol for Cpn in Rosacea since 01/06

Treatment for Rosacea

  • CAP:  01/06-07/07
  • High-Dose Vit D3, NAC:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

As far as blaming porphyrins released by apoptosis for goading the liver into making more porphyrins, I'd have thought that apoptosis would release a whole menagerie of stuff which would need processing by the liver, and that one shouldn't necessarily blame the porphyrins in particular.

Basil: how are you distinguishing between the "antibiotic effect" of Vitamin D and its other effects? (I suppose that you're referring to an immunostimulatory effect, by "antibiotic", as I've not heard of Vitamin D having a direct lethal effect on bacteria.)

Red

BTW, eliminating caffeine seems to have helped me a little, but not completely. So I've decided to "cry uncle" (or scream "have mercy" really) and try eliminating Vit D3 for a little while to see if I can regain some of the ground (particularly energy levels) I  seem to have lost (and seem to continue to lose) while on it the last 6 months.

If eliminating Vit D3 does help, maybe I'll add it in a little more slowly next time or do a few months on and a few months off until I seem to tolerate it better...

On Combined Antibiotic Protocol for Cpn in Rosacea since 01/06

Treatment for Rosacea

  • CAP:  01/06-07/07
  • High-Dose Vit D3, NAC:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

 

Red I just came across this and thought you might be interested......

http://tinyurl.com/34le2m           

Elinor

Elinor ..... from England  on CAP, doxy/roxi/tini  for ME/CFS/lyme borreliosis, positive Cpn and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

Elinor ..... from England  on CAP, doxy/roxi/tini  for ME/CFS/lyme borreliosis, positive Cpn and borrelia. Started Aug05, stopped Jan06, started again Sept 06.
Red

Hi Elinor,

Very interesting indeed.  Thanks.   I had not read it before nor anything else that suggests that oral absorbants like charcoal may worsen some types of porphyria.  

I can't remember if charcoal made my skin conditions worse, but it sure played heck on my IBS symptoms when I tried it early in treatment.   Because of this, I've had to stay away from it...

Thanks again...Very interesting... 

On Combined Antibiotic Protocol for Cpn in Rosacea since 01/06

Treatment for Rosacea

  • CAP:  01/06-07/07
  • High-Dose Vit D3, NAC:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

Red- Your reference on porphyrin production and excretion is superb. It illuminates more about where heme is produced, and thus where Cpn infection can create porphyrins, and confirms the huge source of fat soluble excretion (85%) through the liver bile into the intestines. What surprised me is the amount of heme produced in the bone marrow (80%) vs liver (20%). Makes some sense for those of us with CFS and infected bone marrow cells and suppressed immune function that the porphyrins is not only produced in the liver. One can imagine that infection of femur marrow could be a major contributor to porphyria, and a slow to clear infection as well. 

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 150mg INH, 200 Doxycycline, 500mg MWF Azithromycin, 500mg Tini daily (Continuous protocol)

 

CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Red

Jim , Yes, and if I correctly understand the implications of Dr Stratton's comments on porphyrins spilling into circulation (above) and causing precursor blood cells (in the bone marrow) to make more heme, I'm assuming that this might even escalate things if the heme production is short-circuited in these cells as well as we expect it may be.

To me this really might explain how things can get out of hand so quickly, and why levels might fall fairly quickly too if you eliminate some offending level of the porphyrin production that causes this escalation.

At least I'm hoping this is the case.   Donga needs sleep!

On Combined Antibiotic Protocol for Cpn in Rosacea since 01/06

Treatment for Rosacea

  • CAP:  01/06-07/07
  • High-Dose Vit D3, NAC:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

 

If such a large proportion of porphyrins reach the digestive tract in bile would that explain why since upping my intake of protein I don't seem to be having such severe porphyria symptoms......more protein = more fat = more bile production to carry them out of the liver, or is that just too simple?  It could explain where I went wrong, in eating high carbs at the expense of protein and fat there just wasn't enough bile flow to keep the liver infestation down......works for me anyway. 

 

Elinor ..... from England  on CAP, doxy/roxi/tini  for ME/CFS/lyme borreliosis, positive Cpn and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

Elinor ..... from England  on CAP, doxy/roxi/tini  for ME/CFS/lyme borreliosis, positive Cpn and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

Elinor, I have also noticed that if I eat cheese or other fatty stuff I have less porphyric symptoms.    Not very good for the waistline but is sure makes a difference to how I feel. Can't eat bread at all at the moment...

Michele (UK) GFA: Wheldon CAP1st May 2006 . 26th March 2007 continuous Flagyl at 400mg with 5 day pulses at 1200mg every three weeks. Spokesperson for Ella, RRMS Wheldon CAP 16th March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

Red

Elinor & Michele,

Thanks so much for the added info.  I haven't linked my fat intake with porphyria symptoms yet, but I'll certainly pay more attention to it to see if it does help me too.

Today is my first day sans Vit D3 and am hoping for a swift recovery...   

On Combined Antibiotic Protocol for Cpn in Rosacea since 01/06

Treatment for Rosacea

  • CAP:  01/06-07/07
  • High-Dose Vit D3, NAC:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

I make Steve a multi-purpose pre-meal cocktail of water, lemon juice, stevia, cellulose powder, and olive oil.  The cellulose powder is a good source of insoluble fiber for upper GI healing and regularity.  The lemon juice is in it to absorb endotoxins.  The olive oil is in it to supplement his intake of "good" fat, hopefully to enhance the integrity of fatty membrane layers.  When I'm not available to do this for him, he just adds the cellulose to a drink of any kind.  I've noticed several times that he feels better when he has my drink as compared to his quickie version.  The "fat" content of this thread is perhaps another purpose for our multi-purpose cocktail.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS) / Cpn indicated by reactions; Mpn, EBV, CMV positive; elevated heavy metals; gluten+casein sensitive / Wheldon CAP since Aug. '06 - doxycycline+azithromycin+flagyl pulses; antivirals; chelation; LDN.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

From Red's reference:
... Porphyrins emit intense red fluorescence when exposed to light at around 400 nm. Thus, spectrofluorometric methods provide very sensitive detection and quantification of porphyrins (Soret band).
This makes it sound like one could test for porphyria by pointing an ultraviolet flashlight into the toilet, and seeing if the contents fluoresced red. (A 'middle-class man's porphyria test'?)

By the way, if anyone cares to try this out (I'm not particularly porphyric at the moment), ultraviolet flashlights can be had fairly cheaply. Mine is from here; and looking at it through a spectroscope, it seems to put out plenty of 400nm light.

oops

Daisy - Husband on CAP 5/07.   Roxy, Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxy, Azithromycin, Flagyl, Mino

Daisy - Husband on CAP 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MS drugs killed him.

Daisy on her own CAP 11/2012. 

"BTW, I've also noticed caffeine seems to increase porphyria symptoms greatly for me now that I've added Vit D3 (particularly on flagyli pulses), and I just read that apparently P450 CYP1A2 is involved in caffeine metabolism:"

 

I started both flagyl and vit d about the same time and ended up with what appears to be porphy problems. Perhaps there is some interaction also between Flagyl and Vitd beyond whats happening in the liver with the P-450.

 

"Unconvinced cynic - I think 'so what' when I read this thread, its fascinating hypothosis but is there any clinical evidence ?"

Thats what many of us think until it happens to us and the exacts bear out in the information gathered.

 

"Reducing protein would only lead to a more balanced diet if someone was eating too much in the first place, a blanket recommendation to cut down doesn't allow for individual requirements."

 

Actually North American type diets are well known to provide too much protien which in turn actually leaches calcium from bones and is a big part of our osteoporosis problem. The "normal" recommended amount is too high to begin with. The book Diet for a New American collects the evidence for this well.

 

"This makes me wonder if taking 4000 IU of D3 simply makes things worse. Is the increased porphyria due to Cpni dying? Or is it only making us feel worse?"

 

 4000iu is twice the recommended tops of whats prescribed for deficient folks. You can easily get too much vit d which causes its own set of problems. I wouldn't take more then 2000mg a day under a doc prescription for deficiency. And then only to get back to normal where I would then take small amounts if necessary to maintain.  

 

CAP- zithro, flagyl, plaquenil - CPN +, fibromyalgia, endometriosis, b12 deficiency

CAP- zithro, flagyl, plaquenil - CPN +, fibromyalgia, endometriosis, b12 deficiency

Uh, no, 4000 IU isn't twice what's prescribed for deficient folks. Prescription pills of vitamin D are 50,000 IU. That's what doctors prescribe when they want to seriously move blood levels of the vitamin. The limit of 2000 IU/day (not 2000 milligrams; an IU is a twentieth of a microgram) is for everyday use by nondeficient people -- and how they ever convinced themselves that that is a good limit, when the body can make 20,000 IU/day from the sun, is a mystery.

Oh, by the way, the UV flashlight test I mentioned above didn't seem to work. (I didn't get any "intense red fluorescence" from urine when I was feeling porphyric -- there was some fluorescence, but it was yellow in color, and not that intense.)

It's noted elsewhere that we cpn'ers are generally D deficient, anyway. I think I saw somewhere here that the cpn burns it up faster??? I supplement with 7000 to 8000 units a day and I don't feel so great if I miss a day or two or three, which has happened a handful of times. I see no negatives with this level of D supplementation, but a decreased feeling of 'wellness' at lower or zero levels. There has been so much new, updated information on D in that last year, what we all learned years ago is now greatly obsolete.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Norman

 

50k IU is loading dose for deficiency and that is once a week for a few weeks. I was just tested for and prescribed this. I also did a bunch of research myself.

daily dose for deficient folks is 2000iu

I did say 2000iu a day

And 2000 iu is considered the top anyone can take daily without overdoing it and being sick from it. Taking over 2k iu daily is risky at best unless you have proven to fall below 30 (although there is some argument it should be higher) on your vitamin d tests despite taking 2k iu a day.

This is currrent information from top notch doctors. Your body can not get rid of excess vit d, as it can with some other vitamins. This is NOT something you want to be dosing high with and not relying on blood tests to tell you where you are. Many people in Northern America are deficient.

Perhaps Norman you would understand why 2k is the limit if you did further research on it and looked at what happened to people when they get too much in their systems.

 For one your body naturally stops absorbing vit d from the sun when it is full. Your body can not naturally regulate what you are ingesting. 20k IU may be the maximum your body can take (I don't know the numbers here) but that doesn't mean that it will take that or anywhere near close to that everyday.  

 

CAP- zithro, flagyl, plaquenil - CPN +, fibromyalgia, endometriosis, b12 deficiency

CAP- zithro, flagyl, plaquenil - CPN +, fibromyalgia, endometriosis, b12 deficiency

"Top notch doctors" are not the people to believe about vitamin D. Doctors are busy people who seldom have time to do more than glance at the literature. The people to believe are top researchers specializing in the vitamin. I figure I've done quite enough listening to them and reading their articles, but if you have some good source of information which Vieth, say, missed in his review of the toxicology literature, which failed to find any believable reports of toxicity below 40,000 IU/day (and most reports at dose levels way above that), then by all means provide it.

While the body does stop making vitamin D after a certain daily sun exposure, it's a purely local effect that does not depend on systemic vitamin D stores. Instead, what happens is just that the ultraviolet light that creates vitamin D in the skin also destroys it, so after it builds up to a certain level, as much is being destroyed as being created. This doesn't have much to do with the body's stores, which are kept as 25-hydroxy-vitamin-D, mostly aren't in the skin, and have a half-life of about two months. This effect is what limits you to 10,000-25,000 IU/day from the skin (those numbers are from the above-linked paper); there is no additional regulatory mechanism beside it. So people who run around naked outdoors all day naturally acquire very high levels of vitamin D. Running around naked outdoors is of course abnormal behavior today; but it's the condition in which human biochemistry evolved. It's something we're designed to handle.

  Manycatz, you can read all about what Norman is saying here, written by my own personal top-notch doctor: http://www.davidwheldon.co.uk/vit_D.html.......SarahImage removed.   An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still slowly improving and no exacerbation since starting. EDSS was 7, now 2, less on a good day.Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still slowly improving and no exacerbation since starting. EDSS was 7, now 2, less on a good day.
Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

HELP Jim I am having problems finding things like previous comments sent to me. What was the book you said would help me? My husband is confused too and thinks the way to find info is to put a keyword into search. How exactly do I access answers to my questions, which is silly I know...I will  key in glucose into the search bar. I found loads of interesting stuff when I keyed in Yeast.....I fall asleep or am very lathergic after eating, I get up in the morning after a nights sleep and fall asleep after my breakfast! Where can I buy these glucose tablets? I tried go on the porphyria diet site, but failed. I will have another go.                                                                                                                                         Please don't despair of me, there is hope, I can now post a comment! Wow