Re: Secondary Porphyria from antibacterial treatment

[Guest guest]

Hi Jim, Did I miss the article which gives data suggesting that

Porphyria results in some cases from antibacterial treatment? Is

that a peer-reviewed, published finding?

Neurological symptoms which increase in response to antibiotic

treatment might, you seem to be suggesting, be neither the original

CNS infection nor a herx but an added condition brought about by

antibiotic treatment.

That is a large claim, I would be very interested in there were

published data supporting it. Also in qualifying it. So that people

(like a majority of this list's participants, I'm guessing) who have

taken or are taking long courses of antibiotics can form some

conclusion about the liklihood of this being a concern in their own

cases.

Is there reputable data which clarifies the scope of the problem?

Thanks,

> Hi all-

> I got into providing this info for a discussion of

> " neuro herx " on the Lyme Strategies list and thought

> it might add to the discussion here on herx vs immune

> cytokine release from bacterial die off vs bacterial

> endotoxin vs etc, etc. Now we can add porphyria to the

> list of things to sort out when we react to abx. So

> I'm posting the info drawn from the sources noted.

> Jim

>

> Kurt, et al—

> Below is info on secondary porphyria taken from the

> two sources identified in the links. The second source

> is from and Stratton's patent materials, on

> public record at the US patent office. Worth reading

> relating to Chlamydia problems, but also for their

> meticulous and brilliant science on creating a

> depthful and multifaceted approach to treating this

> disease.

>

> I think I'll break this up into two posts in case it's

> too long.

>

> The description of porphyria (related to multiple

> chemical sensitivity and chemical exposures) sure

> sounds a lot like the " neuro herx " described on this

> list doesn't it?

>

> Secondary Porphyria Part I-

> From:

> http://www.mcsrr.org/resources/articles/S5.html

> A secondary porphyrinuria or coprophyrinuria is a

> porphyrin abnormality that occurs secondarily to some

> other disease which usually test positive for some but

> not all of the diagnostic markers associated with true

> porphyrias.

>

> The broader term " porphyrinopathy " is used here to

> refer to any disorder of porphyrin metabolism,

> inherited or acquired. The porphyrinopathies being

> seen in chemically-sensitive patients do not fit the

> patterns of any known type of inherited porphyria.

> This suggests that they may be the result of an

> acquired abnormality, due either to the direct effects

> of a chemically-induced porphyrinopathy or the

> secondary effects of some other disease.

>

> The " acute " porphyrias always display neurological

> symptoms affecting the central, peripheral and/or

> autonomic nervous systems. These may include any

> combination of abdominal pain, nausea, vomiting,

> constipation, seizures, headaches, difficulty

> concentrating, personality changes, weakness and

> aching in muscles and joints, unsteady gait, poor

> coordination, numbness/ tingling of arms and legs,

> retaining fluids, rapid heart rate, increased blood

> pressure, increased sweating, and intermittent fever.

>

> Acute and chemically-acquired cases also show

> increased sensitivity to a long list of exposures that

> may both bring on symptoms and make them worse. These

> include certain medications (the focus of much

> porphyria research), toxic chemicals (such as PCBs and

> dioxin), alcoholic beverages (including beer and

> wine), other liver diseases (like Hepatitis C and

> cancer) as well as more subtle factors like hormonal

> changes and a low carbohydrate diet. (Skipping meals

> and dieting make symptoms worse, while chemicals that

> mimic the female hormone estrogen are known to trigger

> acute porphyrias--both of which may contribute to the

> higher incidence of acute porphyrias in females.)

>

> Some persons with " acute " types of porphyria excrete

> porphyrin substances in the urine and/or stool only in

> response to exposures that make them ill. Their tests

> are more likely to show changes in the first 2 to 3

> days after the onset of a reaction. Thus, urine and

> stool testing is most sensitive and accurate during

> that time.

> Secondary Porphyria Part I-

> From:

> http://appft1.uspto.gov/netacgi/nph-Parser?

Sect1=PTO2 & Sect2=HITOFF & p=1 & u=%2Fnetahtml%2FPTO%2Fsearch-

bool.html & r=1 & f=G & l=50 & co1=AND & d=PG01 & s1=stratton & s2=chlamydia & OS=str

atton+AND+chlamydia & RS=stratton+AND+chlamydia

> [0179] Treatment of Chlamydia infection may

> [exaserbate] exacerbate secondary porphyria by

> increasing the metabolism of cryptic Chlamydia or by

> accelerating the death of infected cells with elevated

> intracellular porphyrin levels.

>

> [0199]…The potential for secondary effects such as

> porphyria should then be screened. For example, this

> can be evaluated by performing one or a combination of

> the following tests: 1) complete blood count (CBC);

> 2) Liver function tests; 3) Uric acid; 4) Serum iron

> studies; 5) IgM and IgG antibodies to

> coproporpyrinogen-III and Vitamin B12; and, 6) ALA

> dehydratase and PBG deaminase. Urine and stool

> samples should also be tested for presence of

> porphyrins, preferably using 24 hour samples.

>

> [0181] C. Therapies to Enhance Cellular Function

>

> [0182] Glucose is an important source of cellular

> energy. Glucose levels can be enhanced by diet and

> through vitamin supplements as described below.

>

> [0183] A high carbohydrate diet should be maintained

> to promote production of glucose (Pierach et al.,

> Journal of the American Medical Association,

> 257:60-61 (1987)). Approximately 70% of the caloric

> intake should be in the form of complex carbohydrates

> such as bread, potato, rice and pasta. The remaining

> 30% of the daily diet should comprise protein and fat,

> which should ideally be in the form of fish or

> chicken.

> (ed. Absolutely avoid red meats! Worsens porphyria)

>

> [0181] C. Therapies to Enhance Cellular Function

> [0182] Glucose is an important source of cellular

> energy. Glucose levels can be enhanced by diet and

> through vitamin supplements as described below.

>

> [0183] A high carbohydrate diet should be maintained

> to promote production of glucose (Pierach et al.,

> Journal of the American Medical Association,

> 257:60-61 (1987)). Approximately 70% of the caloric

> intake should be in the form of complex carbohydrates

> such as bread, potato, rice and pasta. The remaining

> 30% of the daily diet should comprise protein and fat,

> which should ideally be in the form of fish or

> chicken.

>

> [0188] Multivitamins containing the B complex vitamins

> should be administered daily (e.g., one or multiple

> times), preferably in excess of RDA, to enhance

> glucose availability. Hepatic breakdown of glycogen

> with generation of glucose is assisted by taking

> these multivitamins that contain the B complex

> vitamins. Pyridoxine minimizes the porphyrin related

> porphyrial neuropathy. B complex vitamins include

> folic acid (e.g., 400 .mu.g per dosage; 1200 .mu.g

> daily maximum); vitamin B-1 (thiamin; e.g., 10 mg per

> dosage; 30 mg daily maximum); B-2 (riboflavin; e.g.,

> 10 mg per dosage; 30 mg daily maximum); B-5

> (panothenate; e.g., 100 mg per dosage; 300 mg daily

> maximum); B-6 (pyridoxine; e.g., 100 mg per dosage;

> 300 mg daily maximum) or pyridoxal-5-phosphate (e.g.,

> 25 mg per dosage; 100 mg daily maximum) and B-12

> (e.g., 500 .mu.g per dosage; 10,000 .mu.g daily

> maximum). The preferred method of administration is

> oral for the majority of these vitamins (twice daily),

> except for B-12 for which sublingual administration

> (three-times daily) is preferred. It has been

> discovered that one important effect of this secondary

> porphyria in some patients is the production of IgM

> and IgG antibodies against coproporphyrinogen-III.

> These antibodies cross-react with Vitamin B12

> (cobalamin) and can thus cause a deficiency. Vitamin

> B12 supplementation (e.g., parenteral cobalamin

> therapy) can remedy the deficiency.

>

> [0189] D. Reducing Porphyrin Levels

> [0190] Dietary and pharmaceutical methods can be used

> to reduce systemic porphyrin levels (both

> water-soluble and fat-soluble).

>

> [0191] Plenty of oral fluids in the form of

> bicarbonated water or " sports drinks " (i.e., water

> with glucose and salts) should be incorporated into

> the regimen. This flushes water-soluble porphyrins

> from the patient's system. Drinking seltzer water is

> the easiest way to achieve this goal. The color of

> the urine should always be almost clear instead of

> yellow. It is noted that dehydration concentrates

> prophyrins and makes patients more symptomatic.

>

> [0192] Activated charcoal can be daily administered in

> an amount sufficient to absorb fat-soluble porphyrins

> from the enterohepatic circulation. Treatment with

> activated oral is 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. Charcoal should be taken between

> meals and without any other oral drugs or the charcoal

> will absorb the food or drugs rather than the

> porphyrins. For those who have difficulty taking the

> charcoal due to other medications being taken during

> the day, the charcoal can be taken all at one time

> before bed. Taking between 2 and 20 grams, preferably

> at least 6 grams (24.times.250 mg capsules) of

> activated charcoal per day (Perlroth et al.,

> Metabolism, 17:571-581 (1968)) is recommended. Much

> more charcoal can be safely taken; up to 20 grams six

> times a day for nine months has been taken without

> any side effects.

>

> [0193] For severe porphyria, chelating and other

> agents may be administered, singularly or in

> combination, to reduce levels of porphyrins in the

> blood. Examples of chelating agents include but are

> not limited to Kemet (succimer; from about 10 mg/kg

> to about 30 mg/kg); ethylene diamine tetracetic acid

> (EDTA); BAL (dimercaprol; e.g., 5 mg/kg maximum

> tolerated dosage every four hours), edetate calcium

> disodium (e.g., from about 1000 mg/m.sup.2 to about

> 5000 mg/m.sup.2 per day; can be used in combination

> with BAL); deferoxamine mesylate (e.g., from about

> 500 mg to about 6000 mg per day); trientine

> hydrochloride (e.g., from about 500 mg to about 3 g

> per day); panhematin (e.g., from about 1 mg/kg to

> about 6 mg/kg per day), penacillamine. Intravenous

> hematin may also be administered. Quinine

> derivatives, such as but limited to

> hydroxychloroquine, chloroquine and quinacrine, should

> be administered to the patient daily at a dosage of

> from about 100 mg to about 400 mg per day, preferably

> about 200 mg once or twice per day with a maximum

> daily dose of 1 g. Hydrochloroquine is most

> preferred. The mechanism of action of

> hydroxychloroquine is thought to involve the formation

> of a water-soluble drug-porphyria complex which is

> removed from the liver and excreted in the urine

> (Tschudy et al., Metabolism, 13:396-406 (1964);

> Primstone et al., The New England Journal of Medicine,

> 316:390-393 (1987)).

>

> [0194] To reduce severe porphyric attacks during

> therapy for chronic Chlamydia infections, the use of

> hemodialysis, plasmapheresis, chelating agents and/or

> intravenous hematin may be needed. Any one of these or

> a combination thereof can be used to treat the

> patient and is well within the knowledge of the

> skilled artisan how to carry out these adjunct

> therapies.

>

> [0195] E. Mitigating the Effects of Porphyrins

>

> [0196] Antioxidants at high dosages (preferably taken

> twice per day) help to mitigate the effects of free

> radicals produced by porphyrins. Examples of suitable

> antioxidants include but are not limited to Vitamin C

> (e.g., 1 gram per dosage; 10 g daily maximum);

> Vitamin E (e.g., 400 units per dosage; 3000 daily

> maximum); L-Carnitine (e.g., 500 mg per dosage; 3 g

> daily maximum); coenzyme Q-10 (uniquinone (e.g., 30 mg

> per dosage; 200 mg daily maximum); biotin (e.g., 5 mg

> per dosage; 20 mg daily maximum); lipoic acid (e.g.,

> 400 mg per dosage; 1 g daily maximum); selenium (e.g.,

> 100 .mu.g per dosage; 300 .mu.g daily maximum);

> gultamine (e.g., from 2 to about 4 g per dosage);

> glucosamine (e.g., from about 750 to about 1000 mg

> per dosage); and chondroitin sulfate (e.g., from about

> 250 to about 500 mg per dosage).

>

> [0197] The above-mentioned therapeutic diets can be

> combined with traditional or currently recognized

> drug therapies for porphyria. In one embodiment,

> benzodiazapine drugs, such as but not limited to

> valium, klonafin, flurazepam hydrochloride (e.g.,

> Dalmanc.TM., Roche) and alprazolam (e.g., Xanax), can

> be administered. Preferably, sedatives, such as

> alprazolam (e.g., Xanax; 0.5 mg per dosage for 3 to 4

> times daily), can be prescribed for panic attacks and

> flurazepam hydrochloride (e.g., Dalmane.TM., Roche or

> Restoril.TM. (e.g., 30 mg per dosage)) can be

> prescribed for sleeping. The rationale is based upon

> the presence of peripheral benzodiazepine receptors

> in high quantities in phagocytic cells known to

> produce high levels of radical oxygen species. A

> protective role against hydrogen peroxide has been

> demonstrated for peripheral benzodiazipine receptors.

> This suggests that these receptors may prevent

> mitochondria from radical damages and thereby regulate

> apoptosis in the hematopoietic system.

> Benzodiazepines have also been shown to interfere

> with the intracellular circulation of heme and

> porphyrinogens (Scholnick et al., Journal of

> Investigative Dermatology, 1973, 61:226-232). This is

> likely to decrease porphyrins and their adverse

> effects. The specific benzodiazipine will depend on

> the porphyrin-related symptoms.

>

> [0198] Cimetidine can also be administered separately

> or in combination with benzodiazepine drugs.

> Cimetidine has been shown to effectively scavenge

> hydroxyl radicals although it is an ineffective

> scavenger for superoxide anion and hydrogen peroxide.

> Cimetidine appears to be able to bind and inactivate

> iron, which further emphasizes its antioxidant

> capacity. Cimetidine also is an effective scavenger

> for hypochlorous acid and monochloramine, which are

> cytotoxic oxidants arising from inflammatory cells,

> such as neutrophils. Cimetidine thus would be

> expected to be useful for the therapy of

> free-radical-mediated oxidative damage caused by

> chlamydial porphyria. Recent studies in Japan have

> found that cimetadine is effective for treating

> porphyria. The recommended amount of cimetadine is

> about 400 mg once or twice per day.

[Guest guest]

Jim,

You know, this article is almost spooky. It covers almost all of our

pwc symptoms. Also, the treatment recommendations are so similar to

what we find helpful in our own treatment attempts. B vitamins,

antioxidants, electrolytes, detox agents, etc.

I mean, what they describe is a lot of what I've been doing and

feeling better, right down to the carbonated water. I've even

increased my carbs/breads and fats the last couple of months,

perhaps raising glucose levels?.

Could it be that not only are we dealing with the ravaging effects

of inflammation, but also with secondary Porphyria, caused by our

infections?

And how 'bout this paragraph? Isn't this what Barb did?

hydroxychloroquine, chloroquine and quinacrine, should

> be administered to the patient daily at a dosage of

> from about 100 mg to about 400 mg per day, preferably

> about 200 mg once or twice per day with a maximum

> daily dose of 1 g. Hydrochloroquine is most

> preferred. The mechanism of action of

> hydroxychloroquine is thought to involve the formation

> of a water-soluble drug-porphyria complex which is

> removed from the liver and excreted in the urine

> (Tschudy et al., Metabolism, 13:396-406 (1964);

> Primstone et al., The New England Journal of Medicine,

> 316:390-393 (1987)).

****Here are the highlights of the articles that caught my

attention:***

> > Secondary Porphyria Part I-

> > The broader term " porphyrinopathy " is used here to

> > refer to any disorder of porphyrin metabolism,

> > inherited or acquired. The porphyrinopathies being

> > seen in chemically-sensitive patients do not fit the

> > patterns of any known type of inherited porphyria.

> > This suggests that they may be the result of an

> > acquired abnormality, due either to the direct effects

> > of a chemically-induced porphyrinopathy or the

> > secondary effects of some other disease.

> >

> > The " acute " porphyrias always display neurological

> > symptoms affecting the central, peripheral and/or

> > autonomic nervous systems. These may include any

> > combination of abdominal pain, nausea, vomiting,

> > constipation, seizures, headaches, difficulty

> > concentrating, personality changes, weakness and

> > aching in muscles and joints, unsteady gait, poor

> > coordination, numbness/ tingling of arms and legs,

> > retaining fluids, rapid heart rate, increased blood

> > pressure, increased sweating, and intermittent fever.

****Wow, sound familiar???****

> > Acute and chemically-acquired cases also show

> > increased sensitivity to a long list of exposures that

> > may both bring on symptoms and make them worse. These

> > include certain medications (the focus of much

> > porphyria research), toxic chemicals (such as PCBs and

> > dioxin), alcoholic beverages (including beer and

> > wine),...

****how many pwc can't tolerate alcohol?****

....other liver diseases (like Hepatitis C and

> > cancer) as well as more subtle factors like hormonal

> > changes and a low carbohydrate diet. (Skipping meals

> > and dieting make symptoms worse, while chemicals that

> > mimic the female hormone estrogen are known to trigger

> > acute porphyrias--both of which may contribute to the

> > higher incidence of acute porphyrias in females.)

****hormone induced migraines?****

> > [0179] Treatment of Chlamydia infection may

> > [exaserbate] exacerbate secondary porphyria by

> > increasing the metabolism of cryptic Chlamydia or by

> > accelerating the death of infected cells with elevated

> > intracellular porphyrin levels.

****Treatment either INCREASES THE METABOLISM or ACCELERATES THE

DEATH. Isn't this what Tony preaches? Some abx can stimulate the

bacteria, while the right abx kills them.****

> > [0199]…The potential for secondary effects such as

> > porphyria should then be screened. For example, this

> > can be evaluated by performing one or a combination of

> > the following tests: 1) complete blood count (CBC);

> > 2) Liver function tests; 3) Uric acid; 4) Serum iron

> > studies; 5) IgM and IgG antibodies to

> > coproporpyrinogen-III and Vitamin B12; and, 6) ALA

> > dehydratase and PBG deaminase. Urine and stool

> > samples should also be tested for presence of

> > porphyrins, preferably using 24 hour samples.

****Maybe we all need to get these tests run and see if we

qualify****

> > [0181] C. Therapies to Enhance Cellular Function

> >

> > [0182] Glucose is an important source of cellular

> > energy. Glucose levels can be enhanced by diet and

> > through vitamin supplements as described below.

> >

> > [0183] A high carbohydrate diet should be maintained

> > to promote production of glucose (Pierach et al.,

> > Journal of the American Medical Association,

> > 257:60-61 (1987)). Approximately 70% of the caloric

> > intake should be in the form of complex carbohydrates

> > such as bread, potato, rice and pasta. The remaining

> > 30% of the daily diet should comprise protein and fat,

> > which should ideally be in the form of fish or

> > chicken.

> > (ed. Absolutely avoid red meats! Worsens porphyria)

> >

****What no vegetables? :-) Have to admit, I'm not a fan of red meat

much.****

> > [0188] Multivitamins containing the B complex vitamins

> > should be administered daily (e.g., one or multiple

> > times), preferably in excess of RDA, to enhance

> > glucose availability. Hepatic breakdown of glycogen

> > with generation of glucose is assisted by taking

> > these multivitamins that contain the B complex

> > vitamins. Pyridoxine minimizes the porphyrin related

> > porphyrial neuropathy.

> > It has been discovered that one important effect of this

> > secondary porphyria in some patients is the production of IgM

> > and IgG antibodies against coproporphyrinogen-III.

> > These antibodies cross-react with Vitamin B12

> > (cobalamin) and can thus cause a deficiency. Vitamin

> > B12 supplementation (e.g., parenteral cobalamin

> > therapy) can remedy the deficiency.

> >

> > [0189] D. Reducing Porphyrin Levels

> >

> > [0191] Plenty of oral fluids in the form of

> > bicarbonated water or " sports drinks " (i.e., water

> > with glucose and salts) should be incorporated into

> > the regimen. This flushes water-soluble porphyrins

> > from the patient's system. Drinking seltzer water is

> > the easiest way to achieve this goal. The color of

> > the urine should always be almost clear instead of

> > yellow. It is noted that dehydration concentrates

> > prophyrins and makes patients more symptomatic.

****Perhaps this explains why the Blasi electrolyte/glucose product

works well for so many people? Also, Barb has always emphasized

electrolyte balancing****

> >

> > [0192] Activated charcoal can be daily administered in

> > an amount sufficient to absorb fat-soluble porphyrins

> > from the enterohepatic circulation. Treatment with

> > activated oral is 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. Taking between 2 and 20 grams, preferably

> > at least 6 grams (24.times.250 mg capsules) of

> > activated charcoal per day (Perlroth et al.,

****I'm wondering if this might not be an inexpensive but effective

supplement for people like , who have such severe symptoms? I've

read so many great things about people recovering from really nasty

illnesses with charcoal, bentonite clay, etc. I've just never taken

large doses like recommended here, I suppose I was too cynical, but

doesn't seem there'd be any harm in trying, and what if it really

helped relieve all of these horrible symptoms?****

> > [0193] For severe porphyria, chelating and other

> > agents may be administered, singularly or in

> > combination, to reduce levels of porphyrins in the

> > blood.

> >

> > [0195] E. Mitigating the Effects of Porphyrins

> >

> > [0196] Antioxidants at high dosages (preferably taken

> > twice per day) help to mitigate the effects of free

> > radicals produced by porphyrins. Examples of suitable

> > antioxidants include but are not limited to Vitamin C

> > (e.g., 1 gram per dosage; 10 g daily maximum);

> > Vitamin E (e.g., 400 units per dosage; 3000 daily

> > maximum); L-Carnitine (e.g., 500 mg per dosage; 3 g

> > daily maximum); coenzyme Q-10 (uniquinone (e.g., 30 mg

> > per dosage; 200 mg daily maximum); biotin (e.g., 5 mg

> > per dosage; 20 mg daily maximum); lipoic acid (e.g.,

> > 400 mg per dosage; 1 g daily maximum); selenium (e.g.,

> > 100 .mu.g per dosage; 300 .mu.g daily maximum);

> > gultamine (e.g., from 2 to about 4 g per dosage);

> > glucosamine (e.g., from about 750 to about 1000 mg

> > per dosage); and chondroitin sulfate (e.g., from about

> > 250 to about 500 mg per dosage).

> >

> > [0197] The above-mentioned therapeutic diets can be

> > combined with traditional or currently recognized

> > drug therapies for porphyria. In one embodiment,

> > benzodiazapine drugs, such as but not limited to

> > valium, klonafin, flurazepam hydrochloride (e.g.,

> > Dalmanc.TM., Roche) and alprazolam (e.g., Xanax), can

> > be administered. Preferably, sedatives, such as

> > alprazolam (e.g., Xanax; 0.5 mg per dosage for 3 to 4

> > times daily), can be prescribed for panic attacks and

> > flurazepam hydrochloride (e.g., Dalmane.TM., Roche or

> > Restoril.TM. (e.g., 30 mg per dosage)) can be

> > prescribed for sleeping. The rationale is based upon

> > the presence of peripheral benzodiazepine receptors

> > in high quantities in phagocytic cells known to

> > produce high levels of radical oxygen species. A

> > protective role against hydrogen peroxide has been

> > demonstrated for peripheral benzodiazipine receptors.

> > This suggests that these receptors may prevent

> > mitochondria from radical damages and thereby regulate

> > apoptosis in the hematopoietic system.

> > Benzodiazepines have also been shown to interfere

> > with the intracellular circulation of heme and

> > porphyrinogens (Scholnick et al., Journal of

> > Investigative Dermatology, 1973, 61:226-232). This is

> > likely to decrease porphyrins and their adverse

> > effects. The specific benzodiazipine will depend on

> > the porphyrin-related symptoms.

> >

> > [0198] Cimetidine can also be administered separately

> > or in combination with benzodiazepine drugs.

> > Cimetidine has been shown to effectively scavenge

> > hydroxyl radicals although it is an ineffective

> > scavenger for superoxide anion and hydrogen peroxide.

> > Cimetidine appears to be able to bind and inactivate

> > iron, which further emphasizes its antioxidant

> > capacity. Cimetidine also is an effective scavenger

> > for hypochlorous acid and monochloramine, which are

> > cytotoxic oxidants arising from inflammatory cells,

> > such as neutrophils. Cimetidine thus would be

> > expected to be useful for the therapy of

> > free-radical-mediated oxidative damage caused by

> > chlamydial porphyria. Recent studies in Japan have

> > found that cimetadine is effective for treating

> > porphyria. The recommended amount of cimetadine is

> > about 400 mg once or twice per day.

****Wow, there's Cimetidine again. I think this article was quite a

find and deserves more research. Thanks! penny****

[Guest guest]

Yes.

I researched this pretty thoroughly as sun intolerance is included

with the myriad of other symptoms.

Its my understanding Porphyria is a description of a collection of

symptoms that could occur as side effects from drugs (including abx).

But there can be other causes too-

And I think there was a genetic component for the predisposition to

this (i.e. like memebers of the same family not being able to take

Sulfa drug, etc)

And yes- I did take alot of HCQ - for *other* reasons that what penny

points about about it..

but I was emperically aware that HCQ increased my tolerance to the

sun- hense my backwarks research which lead from HCQ

to porphyria.........

Jim:

I pretty much accept the symptoms of porphyria as secondary

symptoms of some other primary cause........... and it's definitely

not a herx!.

But it muddies the waters for people trying to distinguish between

herx and something else.

The list of symtpoms under the heading porphyria is quite

impressive. And just bolsters my position (again) that the adverse

symptoms most people describe on abx is not herxing.

Barb

> Jim,

>

> You know, this article is almost spooky. It covers almost all of

our

> pwc symptoms. Also, the treatment recommendations are so similar to

> what we find helpful in our own treatment attempts. B vitamins,

> antioxidants, electrolytes, detox agents, etc.

>

> I mean, what they describe is a lot of what I've been doing and

> feeling better, right down to the carbonated water. I've even

> increased my carbs/breads and fats the last couple of months,

> perhaps raising glucose levels?.

>

> Could it be that not only are we dealing with the ravaging effects

> of inflammation, but also with secondary Porphyria, caused by our

> infections?

>

> And how 'bout this paragraph? Isn't this what Barb did?

>

> hydroxychloroquine, chloroquine and quinacrine, should

> > be administered to the patient daily at a dosage of

> > from about 100 mg to about 400 mg per day, preferably

> > about 200 mg once or twice per day with a maximum

> > daily dose of 1 g. Hydrochloroquine is most

> > preferred. The mechanism of action of

> > hydroxychloroquine is thought to involve the formation

> > of a water-soluble drug-porphyria complex which is

> > removed from the liver and excreted in the urine

> > (Tschudy et al., Metabolism, 13:396-406 (1964);

> > Primstone et al., The New England Journal of Medicine,

> > 316:390-393 (1987)).

>

>

> ****Here are the highlights of the articles that caught my

> attention:***

>

> > > Secondary Porphyria Part I-

>

> > > The broader term " porphyrinopathy " is used here to

> > > refer to any disorder of porphyrin metabolism,

> > > inherited or acquired. The porphyrinopathies being

> > > seen in chemically-sensitive patients do not fit the

> > > patterns of any known type of inherited porphyria.

> > > This suggests that they may be the result of an

> > > acquired abnormality, due either to the direct effects

> > > of a chemically-induced porphyrinopathy or the

> > > secondary effects of some other disease.

> > >

> > > The " acute " porphyrias always display neurological

> > > symptoms affecting the central, peripheral and/or

> > > autonomic nervous systems. These may include any

> > > combination of abdominal pain, nausea, vomiting,

> > > constipation, seizures, headaches, difficulty

> > > concentrating, personality changes, weakness and

> > > aching in muscles and joints, unsteady gait, poor

> > > coordination, numbness/ tingling of arms and legs,

> > > retaining fluids, rapid heart rate, increased blood

> > > pressure, increased sweating, and intermittent fever.

>

> ****Wow, sound familiar???****

>

> > > Acute and chemically-acquired cases also show

> > > increased sensitivity to a long list of exposures that

> > > may both bring on symptoms and make them worse. These

> > > include certain medications (the focus of much

> > > porphyria research), toxic chemicals (such as PCBs and

> > > dioxin), alcoholic beverages (including beer and

> > > wine),...

>

> ****how many pwc can't tolerate alcohol?****

>

> ...other liver diseases (like Hepatitis C and

> > > cancer) as well as more subtle factors like hormonal

> > > changes and a low carbohydrate diet. (Skipping meals

> > > and dieting make symptoms worse, while chemicals that

> > > mimic the female hormone estrogen are known to trigger

> > > acute porphyrias--both of which may contribute to the

> > > higher incidence of acute porphyrias in females.)

>

> ****hormone induced migraines?****

>

> > > [0179] Treatment of Chlamydia infection may

> > > [exaserbate] exacerbate secondary porphyria by

> > > increasing the metabolism of cryptic Chlamydia or by

> > > accelerating the death of infected cells with elevated

> > > intracellular porphyrin levels.

>

> ****Treatment either INCREASES THE METABOLISM or ACCELERATES THE

> DEATH. Isn't this what Tony preaches? Some abx can stimulate the

> bacteria, while the right abx kills them.****

>

>

> > > [0199]…The potential for secondary effects such as

> > > porphyria should then be screened. For example, this

> > > can be evaluated by performing one or a combination of

> > > the following tests: 1) complete blood count (CBC);

> > > 2) Liver function tests; 3) Uric acid; 4) Serum iron

> > > studies; 5) IgM and IgG antibodies to

> > > coproporpyrinogen-III and Vitamin B12; and, 6) ALA

> > > dehydratase and PBG deaminase. Urine and stool

> > > samples should also be tested for presence of

> > > porphyrins, preferably using 24 hour samples.

>

> ****Maybe we all need to get these tests run and see if we

> qualify****

>

> > > [0181] C. Therapies to Enhance Cellular Function

> > >

> > > [0182] Glucose is an important source of cellular

> > > energy. Glucose levels can be enhanced by diet and

> > > through vitamin supplements as described below.

> > >

> > > [0183] A high carbohydrate diet should be maintained

> > > to promote production of glucose (Pierach et al.,

> > > Journal of the American Medical Association,

> > > 257:60-61 (1987)). Approximately 70% of the caloric

> > > intake should be in the form of complex carbohydrates

> > > such as bread, potato, rice and pasta. The remaining

> > > 30% of the daily diet should comprise protein and fat,

> > > which should ideally be in the form of fish or

> > > chicken.

> > > (ed. Absolutely avoid red meats! Worsens porphyria)

> > >

>

> ****What no vegetables? :-) Have to admit, I'm not a fan of red

meat

> much.****

>

> > > [0188] Multivitamins containing the B complex vitamins

> > > should be administered daily (e.g., one or multiple

> > > times), preferably in excess of RDA, to enhance

> > > glucose availability. Hepatic breakdown of glycogen

> > > with generation of glucose is assisted by taking

> > > these multivitamins that contain the B complex

> > > vitamins. Pyridoxine minimizes the porphyrin related

> > > porphyrial neuropathy.

>

> > > It has been discovered that one important effect of this

> > > secondary porphyria in some patients is the production of IgM

> > > and IgG antibodies against coproporphyrinogen-III.

> > > These antibodies cross-react with Vitamin B12

> > > (cobalamin) and can thus cause a deficiency. Vitamin

> > > B12 supplementation (e.g., parenteral cobalamin

> > > therapy) can remedy the deficiency.

> > >

> > > [0189] D. Reducing Porphyrin Levels

> > >

> > > [0191] Plenty of oral fluids in the form of

> > > bicarbonated water or " sports drinks " (i.e., water

> > > with glucose and salts) should be incorporated into

> > > the regimen. This flushes water-soluble porphyrins

> > > from the patient's system. Drinking seltzer water is

> > > the easiest way to achieve this goal. The color of

> > > the urine should always be almost clear instead of

> > > yellow. It is noted that dehydration concentrates

> > > prophyrins and makes patients more symptomatic.

>

> ****Perhaps this explains why the Blasi electrolyte/glucose product

> works well for so many people? Also, Barb has always emphasized

> electrolyte balancing****

> > >

> > > [0192] Activated charcoal can be daily administered in

> > > an amount sufficient to absorb fat-soluble porphyrins

> > > from the enterohepatic circulation. Treatment with

> > > activated oral is 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. Taking between 2 and 20 grams, preferably

> > > at least 6 grams (24.times.250 mg capsules) of

> > > activated charcoal per day (Perlroth et al.,

>

> ****I'm wondering if this might not be an inexpensive but effective

> supplement for people like , who have such severe symptoms?

I've

> read so many great things about people recovering from really nasty

> illnesses with charcoal, bentonite clay, etc. I've just never taken

> large doses like recommended here, I suppose I was too cynical, but

> doesn't seem there'd be any harm in trying, and what if it really

> helped relieve all of these horrible symptoms?****

>

> > > [0193] For severe porphyria, chelating and other

> > > agents may be administered, singularly or in

> > > combination, to reduce levels of porphyrins in the

> > > blood.

> > >

> > > [0195] E. Mitigating the Effects of Porphyrins

> > >

> > > [0196] Antioxidants at high dosages (preferably taken

> > > twice per day) help to mitigate the effects of free

> > > radicals produced by porphyrins. Examples of suitable

> > > antioxidants include but are not limited to Vitamin C

> > > (e.g., 1 gram per dosage; 10 g daily maximum);

> > > Vitamin E (e.g., 400 units per dosage; 3000 daily

> > > maximum); L-Carnitine (e.g., 500 mg per dosage; 3 g

> > > daily maximum); coenzyme Q-10 (uniquinone (e.g., 30 mg

> > > per dosage; 200 mg daily maximum); biotin (e.g., 5 mg

> > > per dosage; 20 mg daily maximum); lipoic acid (e.g.,

> > > 400 mg per dosage; 1 g daily maximum); selenium (e.g.,

> > > 100 .mu.g per dosage; 300 .mu.g daily maximum);

> > > gultamine (e.g., from 2 to about 4 g per dosage);

> > > glucosamine (e.g., from about 750 to about 1000 mg

> > > per dosage); and chondroitin sulfate (e.g., from about

> > > 250 to about 500 mg per dosage).

> > >

> > > [0197] The above-mentioned therapeutic diets can be

> > > combined with traditional or currently recognized

> > > drug therapies for porphyria. In one embodiment,

> > > benzodiazapine drugs, such as but not limited to

> > > valium, klonafin, flurazepam hydrochloride (e.g.,

> > > Dalmanc.TM., Roche) and alprazolam (e.g., Xanax), can

> > > be administered. Preferably, sedatives, such as

> > > alprazolam (e.g., Xanax; 0.5 mg per dosage for 3 to 4

> > > times daily), can be prescribed for panic attacks and

> > > flurazepam hydrochloride (e.g., Dalmane.TM., Roche or

> > > Restoril.TM. (e.g., 30 mg per dosage)) can be

> > > prescribed for sleeping. The rationale is based upon

> > > the presence of peripheral benzodiazepine receptors

> > > in high quantities in phagocytic cells known to

> > > produce high levels of radical oxygen species. A

> > > protective role against hydrogen peroxide has been

> > > demonstrated for peripheral benzodiazipine receptors.

> > > This suggests that these receptors may prevent

> > > mitochondria from radical damages and thereby regulate

> > > apoptosis in the hematopoietic system.

> > > Benzodiazepines have also been shown to interfere

> > > with the intracellular circulation of heme and

> > > porphyrinogens (Scholnick et al., Journal of

> > > Investigative Dermatology, 1973, 61:226-232). This is

> > > likely to decrease porphyrins and their adverse

> > > effects. The specific benzodiazipine will depend on

> > > the porphyrin-related symptoms.

> > >

> > > [0198] Cimetidine can also be administered separately

> > > or in combination with benzodiazepine drugs.

> > > Cimetidine has been shown to effectively scavenge

> > > hydroxyl radicals although it is an ineffective

> > > scavenger for superoxide anion and hydrogen peroxide.

> > > Cimetidine appears to be able to bind and inactivate

> > > iron, which further emphasizes its antioxidant

> > > capacity. Cimetidine also is an effective scavenger

> > > for hypochlorous acid and monochloramine, which are

> > > cytotoxic oxidants arising from inflammatory cells,

> > > such as neutrophils. Cimetidine thus would be

> > > expected to be useful for the therapy of

> > > free-radical-mediated oxidative damage caused by

> > > chlamydial porphyria. Recent studies in Japan have

> > > found that cimetadine is effective for treating

> > > porphyria. The recommended amount of cimetadine is

> > > about 400 mg once or twice per day.

>

> ****Wow, there's Cimetidine again. I think this article was quite a

> find and deserves more research. Thanks! penny****

[Guest guest]

Jim,

Thanks for bringing this topic up. Like Barb, I also tried to look into a possible faulty porphyria processing mechanism as another actor in our reactions to abx. I was tested for secondary porphyrinuria a while back but was told the level was "normal", yet I do have (or rather used to have) reddish urine which became redder if I put it in a glass jar and let it stand for a while exposed to light. That was before I was treated with abx, I seem to have clear yellow urine these days.

My husband (also sick) still has this reddish urine which becomes very red when exposed to light, not blood we tested it several times. He also had constantly high bilirubin (free bilirubin), now, after a long time on abx, his bilirubin is sometimes high other times close to normal or normal.

When I read Stratton and Wheldon I noted their interest in porphyria but as usual found it difficult to really come to conclusions, especially as testing for it is not "yes" or "no" (what is?).

Nelly

[Guest guest]

Nelly:

Oxidation changes things pretty rapidly.

Pee will turn more orange/redder as it's components oxidize.

Horse pee in the snow will be almost blood red after a while.

> Jim,

>

> Thanks for bringing this topic up. Like Barb, I also tried to look

into a possible faulty porphyria processing mechanism as another

actor in our reactions to abx. I was tested for secondary

porphyrinuria a while back but was told the level was " normal " , yet I

do have (or rather used to have) reddish urine which became redder if

I put it in a glass jar and let it stand for a while exposed to

light. That was before I was treated with abx, I seem to have clear

yellow urine these days.

>

> My husband (also sick) still has this reddish urine which becomes

very red when exposed to light, not blood we tested it several times.

He also had constantly high bilirubin (free bilirubin), now, after a

long time on abx, his bilirubin is sometimes high other times close

to normal or normal.

>

> When I read Stratton and Wheldon I noted their interest in

porphyria but as usual found it difficult to really come to

conclusions, especially as testing for it is not " yes " or " no " (what

is?).

>

>

> Nelly

[Guest guest]

Nelly I was in the mood for experimenting one time with a urine

sample sent to the lab.I had a few previous samples that came back

with blood in the report. This one time I actually introduced a few

drops from a pin prick and to my surprise it came back negative.I

had this gut feeling that patholgy was very fickle as opposed to

rock solid which we are all led to believe.

tony

> Jim,

>

> Thanks for bringing this topic up. Like Barb, I also tried to look

into a possible faulty porphyria processing mechanism as another

actor in our reactions to abx. I was tested for secondary

porphyrinuria a while back but was told the level was " normal " , yet

I do have (or rather used to have) reddish urine which became redder

if I put it in a glass jar and let it stand for a while exposed to

light. That was before I was treated with abx, I seem to have clear

yellow urine these days.

>

> My husband (also sick) still has this reddish urine which becomes

very red when exposed to light, not blood we tested it several

times. He also had constantly high bilirubin (free bilirubin), now,

after a long time on abx, his bilirubin is sometimes high other

times close to normal or normal.

>

> When I read Stratton and Wheldon I noted their interest in

porphyria but as usual found it difficult to really come to

conclusions, especially as testing for it is not " yes " or " no " (what

is?).

>

>

> Nelly