Cpnhelp.org

Don't forget:

• avoid sucrose and fructose, seek glucose.

• Red meat, tuna, and dark turkey are verboten, too. Chicken, fish, nuts, and eggs -- and, as you say, not too much of them.

• Alcohol is a real promoter of porphyria as well.

I've never been quite sure whether the dairy prohibition is because of porphyria or because of rendering the doxy ineffective, so I didn't include that.

Now, what else -- I'm sure that's not everything.

Ron

On Stratton protocol for CFS starting 01/06 (NE Ohio, USA).

John- Other than those the only other one suggested is low-dose Plaquinal (125mg two or three times a week). Severe porphyria requires IV Hematin, which is a human blood product, very expeinsive and only obtainable for proven porphyric condition (mostly genetic in origin).

Combined Antibiotic Protocol for Chlamydia pneumonia in Chronic Fatigue Syndrome & Fibromyalgia- Currently: 150mg INH, Doxycycline/Zithromycin, Tinidazole pulses. Northern Ohio, USA

Cimetidine has been used in both hereditary and secondary porphyrias [Horie Y, et al., Cimetidine in the treatment of porphyria cutanea tarda. Intern Med. 1996 Sep;35(9):717-9.] It is very inexpensive.

Thanks for all the replies, I'm glad to get the additional information.

I was also thinking that vitamin B12 counteracts porphyria due to being similar in molecular structure to a porphyrin but I can't remember if that's the case.  Does that sound correct? 

all my best

John

RRMS/disability 4.5 on Wheldon Protocol since 04/12/2006

More on glucose & porphyria-

Glucose has been the standard treatment for serious porphyric attachs, usually IV. This quote explains it further:

Intravenous administration of glucose (a pure form of carbohydrate) is part of the standard treatment of acute attacks of porphyria. Glucose is given by vein because the stomach and intestine usually do not function properly during an attack, and material taken by mouth is not properly propelled through these organs. Glucose and other carbohydrates can repress the pathway for synthesis of herne in the liver. As a result, the overproduction of prophyrin precursors and porphyrins is repressed by carbohydrate administration. 

http://theaipforum.tripod.com/

The site above has some excellent dietary guidlines for porphyria.

From the Cpn Handbook, Mitchell and Stratton note further:

Increasing the availability of glucose provides optimal conditions for the cells to produce energy. However, sucrose is not the best way to increase the glucose availability. Sucrose is a mixture of glucose and fructose. Fructose is the sugar contained in fruit. Because high levels of fructose act as a signal to the liver to store glycogen, an excess of fructose may temporarily reduce the availability of glucose at the cellular level. Fructose should be avoided as much as possible.

 I think the molecular symetry of B12 is accurate but speculative about it's function. I think it's strong methylation effects and that it is used up rapidly for this purpose in porphyria is the original idea.

Combined Antibiotic Protocol for Chlamydia pneumonia in Chronic Fatigue Syndrome & Fibromyalgia- Currently: 150mg INH, Doxycycline/Zithromycin, Tinidazole pulses. Northern Ohio, USA

On B12 from David Wheldon-

I'll add this nice bit from David Wheldon's site on B12:

High-dose sublingual Vitamin B12 (methylcobalamin) should be taken; initially 4000 - 5000 micrograms several times a day, reducing to once daily after three months. This is to flood the system with methylcobalamin as there is often a functional B12 deficit, as evidenced by raised serum methylmalonate or homocysteine. Vitamin B12 (together with B6 and folate) counteracts the hyperhomocysteinaemia which frequently accompanies chronic Chl pneumoniae infection and which is thought to cause connective tissue damage. Excess homocysteine is a potent neurotoxin with activity against cortical and hippocampal neurones. [1. Kruman II, Culmsee C, Chan SL, et al., Homocysteine elicits a DNA damage response in neurons that promotes apoptosis and hypersensitivity to excitotoxicity. J Neurosci 2000;20:6920-6:] [2. Den Heijer T, Vermeer SE, Clarke R, Oudkerk M, Koudstaal PJ, Hofman A, et al. Homocysteine and brain atrophy on MRI of non-demented elderly. Brain 2002;126:170-5:] [3. Leblhuber F, Walli J, Artner-Dworzak E, Vrecko K, Widner B, Reibnegger G, et al. Hyperhomocysteinemia in dementia. J Neural Tansm 2000;107:1469-74.] An excellent review of Vitamin B12 and multiple sclerosis can be recommended here: [Miller A, Korem M, Almog R, Galboiz Y. Vitamin B12, demyelination, remyelination and repair in multiple sclerosis. J Neurol Sci 2005 Jun 15;233(1-2):93-7.]

http://www.davidwheldon.co.uk/ms-treatment.html 

Combined Antibiotic Protocol for Chlamydia pneumonia in Chronic Fatigue Syndrome & Fibromyalgia- Currently: 150mg INH, Doxycycline/Zithromycin, Tinidazole pulses. Northern Ohio, USA

Hi John

Most of us try very hard to avoid or consume as required. I never had any luck avoiding milk and cheese. I do not eat much red meat (maybe a couple of ounces a couple of times a month) and my preferred fowl has always been dark but I have conformed to the rest for the most part. But I do eat lots of cheese, - 3 to 4 ozs a day at least - lots of raw vegetables, few eggs, very few fried foods and lots of fish. I always take all my supplements and abx. We have to have some freedom to indulge and it appears that for Paron and me, it may be dairy. As for porphyria, I took charcoal my last pulse (I have not needed it for a few months!) because I was so obviously having a really, really good one but it does get lots, lots better!

Rica PPMS  EDSS 6.7 at beginning - now 2.  Began CAP Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith,  cont. flagyl  total 39 pulses NC USA

John, the symptoms you describe just sound to me
like a person recovering from multiple sclerosis digesting his food.  Your
body is concentrating on digesting the food rather than bothering about whether
you drag your foot a bit.  Although I can now use a knife and fork very
well, towards the end of the meal I can lose  lot of strength in my wrists
and fingers and make really heavy going of cutting up the remaining food. 
I can then drag my feet whereas previously I wasn't simply because I can't be
bothered not to.  For a few minutes I just want to close my eyes. 
Half an hour later, digestion nearly finished, I am back to my normal, alert
self........Sarah
 
An Itinerary in Light and
ShadowWheldon regime since August 2003, for very aggressive SPMS.  Intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2. United Kingdom.

Neat to pop this discussion up again accidently. John, putting together Sarah's comment about energy going into digesting food and some comments made by Dr. Stratton: since Cpn is an ATP (energy molecule) parasite there's less available for other cellular and organ functions. Any other heavy use of ATP such as muscle activity or even digestion (active transport processes) will leave some cells at a deficit and incomplete heme... ie porphyria can result. Isn't there some old saw about the energy to digest celery is more than it provides, hence the perfect diet food?

Another factor- Cpn up-regulates the host cell to absorb more glucose from the bloodstream, so it can make more ATP for the Chlamydia. So these big blood sugar crashes, which then result in more porphyria, all get rolled up together.

Your symptoms are familiar to me from times past, but without the foot-drop:"...lethargic, less coordinated, sometimes to the point where I have to be very careful with walking." My kids used to call me a klutz because I was always banging into things, especially when low blood sugar and porphyric from die-off.

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 150mg INH, 300mg Rifampin, 200 Doxycycline, 500mg mwf Azithromycin, plus 500mg Tinidazole 2x/day pulses every two weeks. Whew! That's a lot!

 It depends-- some people (Ella for example) need the glucose to help suppress porphyric nausea and get back appetite. John appears to be needing it after eating to avoid blood sugar drop and porphyria from the energy it takes to digest! At least that's the hypothesis. We see all kinds of twists and turns in this.

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 150mg INH, 300mg Rifampin, 200 Doxycycline, 500mg mwf Azithromycin, plus 500mg Tinidazole 2x/day pulses every two weeks. Whew! That's a lot!

Jim's right, when Ella is in a porphyric state, and she is about to eat when hungry her mouth starts to water to such an extent that it pours out of her mouth, and she feels very sick.   When she is feeling this way now, she takes a glucose tablet and the symptoms stop more or less immediately.  If she ignores the symptoms she usually sicks up what she has eaten some 10 minutes after eating.

This does not happen very often now but she still gets the following symptoms: stomach hunger and the feeling of nausea at the same time.   She has to make an effort to eat, as she does not feel like putting food in her mouth, but if she does she usually manages to keep it down.  

Michele: Wheldon CAP1st May 2006 for ailments including IBS, sinusitis, alopecia, asthma, peripheral neuropathy. Spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMS. Sussex UK

Hi all, just reading again about secondary porphyria and came across something interesting in Dr Stratton's article The Pathogenesis of Systemic Chlamydial Infections: Theoretical Considerations of Host Cell Energy Depletion and Its Metabolic Consequences that just didn't sink in before.

Forgive me if you understood this before, but although I'd read the article before I guess I didn't catch this. In the last paragraph he mentions the implications of Cpn infection of liver cells and states:

"Moreover, if chlamydiae were to infect hepatic cells, the use of any pharmacologic agents that are metabolized in the liver will increase the need for cytochrome P-450 which is a heme-based enzyme. Hence, the biosynthesis of heme in the liver is increased. If hepatic cells were infected with Chlamydia species, the decreased energy in the host cell would not allow heme biosynthesis to go to completion, and porphyrins in the liver/entero-hepatic circulation would increase."

He also goes on to mention that when the antimicrobial agents kill the Cpn the accumulated intracellular porphyrins would be released. Luckily I managed to catch this concept the first time I read it prior to beginning treatment.

The concept of increasing the need for P-450 by pharmacologic agents intrigues me in that I've noticed Vit D3 seems to increase porphyria symptoms for me. I recently read that apparently Vit D3 synthesis also requires P-450 enzymes in the liver and kidney:

CYTOCHROME P450, SUBFAMILY IIR, POLYPEPTIDE 1; CYP2R1

CYTOCHROME P450, SUBFAMILY XXVIIB, POLYPEPTIDE 1; CYP27B1

I'm wondering if increased need for P450 might be a good part of the reason Vit D3 seems to increase porphyria symptoms (in addition to its pro-apoptosis effects)?

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

CYTOCHROME P450, SUBFAMILY I, POLYPEPTIDE 2; CYP1A2

Does this make sense?

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

Amazing, Red. Could this be one of the reasons that D is not metabolized in Cpn infected bodies because of this liver enzyme being in short supply?
"I recently read that apparently Vit D3 synthesis also requires P-450 enzymes in the liver and kidney"

BTW, caffeine is a big trigger for porphyria for me---but I seem to have musch less porphyria these days.

What a complex puzzle. Thanks for th elinks,
Raven

Gosh, interesting question Raven, but I'm not sure what if anything might cause a short supply of the P-450 enzymes involved in Vit D metabolism. I'll see if I can find anything.

Up to this point caffeine has been more of a help than a problem for me, but I'm now wondering if cutting it out might help with some of my remaining (and sort of still increasing) porphyria symptoms. I'm currently trying to cut it out slowly (one half mug at a time)...

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

The quantities of Vitamin D involved are low enough that I doubt that the need to synthesize enzymes to modify Vitamin D has much to do with porphyria. Only micrograms of Vitamin D are present; in comparison, gluconeogenesis needs to operate on gram quantities, since it's generating the main fuel used by the body. (Avoiding gluconeogenesis is the reason for eating glucose to stop a porphyria attack.)

Thanks so much Basil. I cannot tell you how helpful this information is. It really confirms my suspicions that Vit D3 seems to be causing porphyria symptoms for me too through this method (rather than just through apoptosis mechanisms). I found immediately upon starting Vit D3 that I became extremely alcohol intolerent. This explains why. I believe I now (after 6 months of 4000iu of Vit D3) that I've reached a point where I may be intolerent of caffeine as well. I'll continue to try to eliminate it slowly from my diet (to avoid withdrawal symptoms).

Here's another question for you, glucose tabs seem to almost immediately provide relief of my symptoms (within @ 20 minutes or so). But within a couple of hours I notice greatly increased congestion symptoms that last for @ 8-12 hours or so. High carb meals seem to do the same. While I'm worried about candida/yeast problems, the quick onset of these symptoms (and then clearance) doesn't seem to make a lot of sense along these lines. I'm wondering if the increased glucose/carbs sets off some kind of inflammatory or oxidative type reaction with the porphyrins (to eventually help scavenge and clear them), but haven't been able to find much on this. Does this make any sense?

Thanks again so much as always....

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

Thanks Basil.   Many of these symptoms are VERY familiar to me, and I've always been more than a little sensitive to foods high in sugars so potentially this explanation makes a lot of sense in my case too.

I think I'll continue to try to cut out caffeine and try bumping up my intake of complex carbs a bit to see if I can reach a happy medium state between porphyria and congestion/inflammation. 

Thanks again and take care... 

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

Thanks basil for the information on Hypoglycemia.  I have this disorder and keep the simple carbs down to a dull roar.  I see, like many other ailments, there are cross over symptoms - CFIDS/ME.

When my intestinal flora gets out of what I know because I crave sugar.  It is a challenge being on abx & keeping the balance as in the past I have had a candida problem (I just did a cleanse in February).

The change in the diet recommended during the protocol I feel will have me gaining alot of weight?  When I am able to do more exercise I increase the complex carbs accordingly.

I hope I will be ok; I continue down the path

Mad CAPper

With Christ in Faith

Ruth 

 Basil- Reading your post on the azith thread:

Finally, I personally have suffered repeated porpyria attacks triggered by CAP, even though none of the substances I take require Phase I metabolism (and therefore would not be porphyria triggers). My attacks are not simply the result of porphyrin release from liver-cell apoptosis, but full blown, out-of-control, continuous-porphrin production attacks that can be stopped only by taking large amounts of gluecose and cimetidine (a P450 inhibitor).

It got me thinking: could apoptosis and dump of intracellular porphyrins require Phase 1 processing by the liver, ie how are the fat soluble porphyrins processed by the liver? That would put a big demand on the liver which would trigger immediate porphyrin attack, and round and round.

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

yikes, all this talk about the liver & porphyrins.  scary.  I am glad I backed off the flagyl/metro as my liver, gallbladder, spleen area was very sore.  I guess that is porphyrin attack as after I cut the doseage in 1/2, about 4 days I had less pain in that area.

The Nasty Cpn already triggered my Hemochromatosis - excess iron storage.  My inner Physician has been working overtime for years, I blame everything on the bacteria!! lol

My best wishes

With Christ in Faith

Ruth