Lactoferrin and porphyria (was "Ferrolactin" (sic))

This is something I have been meaning to get clarified: how important are ferrolactins as promoters of porphyria?I know that Stratton's patent mentions it, and that avoiding porphyria is the reason for avoiding dairy products in his protocol.

How bad are dairy products as promoters of porphyria? As bad as alcohol? Only about as bad as sugar? What are we looking at, here? Does anyone know?

Ron 

P.S. The other reason I've been wanting to discuss this: if the reason for the dairy prohibition is preventing porphyria, then that whole discussion about blocking the absorption of doxycycline was a big red herring. Doesn't matter whether it interferes or not; we still have to avoid it.

Just how important is it? Scrape the parmesan off the spaghetti? Wet our Wheaties with orange juice?

Or just don't have macaroni and cheese with a big glass of milk for dinner?

Ron 

On CAP for CFS starting 01/06 (NE Ohio, USA)

Currently: doxy & zith -- continous; metronidazole -- 4days on, 7 days off.

Ron

On CAP for CFS starting 01/06 (NE Ohio, USA)

Began rifampin trial 1/14/09

Currently: on intermittent

Ron  Are ferrolactins and lactoferrins the same thing?  If so, I would really like to know the answer to your questions too.  Steve starts every day with a cocktail made from the powdered version of this supplement.  It claims to be "a highly concentrated, non-dairy source of serum-derived immunoglobulin antibodies and immuno-proteins." The blurb goes on to claim that it "delivers 15 times the level of transferrin and lactoferrin than colostrum alone."  I have sometimes felt iffy about this supplement when I ponder maintaining the right balance of inflammation, but your questions put a new slant on the iffiness.  Thanks,

Joyce~caregiver-advocate in Dallas for Steve J (SPMS) / Mpn, EBV, CMV, elevated heavy metals; strong indications of Cpn, gluten+casein sensitive / Wheldon CAP since Aug. '06 - 200mg doxycyline/day + 250mg azithromycin every other day; 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. 

Joyce, you asked "Are ferrolactins and lactoferrins the same thing? " and I have to answer "Only on day 4 of a pulse, writing at lunch with the clock ticking." I just misremembered the term. I'll edit the post to correct that.

Your concern about Xymogen and other questions about dairy as a porphyria promoter are why I  tried to start the thread a little differently.

Ron

On CAP for CFS starting 01/06 (NE Ohio, USA)

Currently: doxy & zith -- continous; metronidazole -- 4days on, 7 days off.

Ron

On CAP for CFS starting 01/06 (NE Ohio, USA)

Began rifampin trial 1/14/09

Currently: on intermittent

Ron,  Are you sure it's the lactoferrins that are the culprits in dairy products as concerns porphyria?  In any case, your post set me off on a tangent where I found this terrific CDC article titled "Iron Loading and Disease Surveillance."  Cpn infection was even mentioned in the concluding statements.  This article also went a long way in erasing my iffiness about the IgG 2000 DF supplementation...I'm thinking about starting it myself.  It also strengthened my notion that Steve's problems started or were pretty well boosted in infancy when he was born jaundiced, isolated from his mother in a hospital nursery, never received mother's milk, never adapted well to formulas, and mostly was nourished on high-sugar formulas for the duration of his infancy.  Thanks for the kickoff.  By the way, for milk with your mac and cheese, you might want to contact La Leche League.

The CDC article link:  http://www.cdc.gov/NCIDOD/EID/vol5no3/weinberg.htm

Joyce~caregiver-advocate in Dallas for Steve J (SPMS) / Mpn, EBV, CMV, elevated heavy metals; strong indications of Cpn, gluten+casein sensitive / Wheldon CAP since Aug. '06 - 200mg doxycyline/day + 250mg azithromycin every other day + pulsed metronidazole 375mg 3X/day; 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. 

 This is from the Vanderbilt protocol -- I guess it doesn't occur in the patent as I thought:

[quote] 

Specific measures for the therapy of porphyria as derived from published medical literature on porphyria are employed and include: . . . 4. Avoid Milk Products -- Milk products contain lactose and lactoferrin, both of which should be avoided as much as possible. . . .

[/quote] 

I'll offer this: meat, even chicken and fish, is a big driver for me. I have to be very sparing, especially during a pulse.

I'd like to hear from others who experience lots of porphyria symptoms: How potent is milk?

 Ron

On CAP for CFS starting 01/06 (NE Ohio, USA)

Currently: doxy & zith -- continous; metronidazole -- 4days on, 7 days off.

Ron

On CAP for CFS starting 01/06 (NE Ohio, USA)

Began rifampin trial 1/14/09

Currently: on intermittent

I personally have not noticed milk as an aggravator of porphyria for me, although mostly I drink it as cream in my coffee and an occaisional ice cream. Honestly, the worse aggravators for me are low blood sugar (not eating) and insufficient water and (nonpulse) and alcohol. Red meat during a pulse is also is an aggravator. It may be that I don't drink enough milk to notice. It does worry me that my daughter, who has one of the worse cumulative porphyria cases I know of, drinks a lot of milk.

Combined Antibiotic Protocol for Chlamydia pneumonia in Chronic Fatigue Syndrome & Fibromyalgia- Currently: 150mg INH, Doxycycline/Zithromycin, 300mg Rifampin, Tinidazole pulses. Northern Ohio, USA

 

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

Hi Ron,

Earlier in treatment, milk and cheese seemed to cause porphyria symptoms to increase greatly for me, along with too much physical exertion, alcohol, too little water intake, too much red meat, chicken, and I'm thinking particularly pork.   I may be the odd duck on this too, but it was fairly easy for me to identify the offending food, drink, or activity, as my urine would go dark within a couple of hours of the offending activity or food/drink and symptoms (headache, fatigue, etc), would then start showing up within another couple of hours.  This was particularly true during flagyl pulses.

I've since found that keeping my urine absolutely and continuously clear seems to be key for me.   Although I try to drink plenty of water throughout the day, if my urine goes dark, I immediately drink a couple of additional 12oz glasses of water.   I also try to increase water intake with exercise or eating/drinking an offending item and most of the time now I seem to get by without any symptoms.

Also, FYI, up until recently, I've tried to stuff myself with carbs throughout the day to avoid porphyria symptoms (and carbs really seemed to help with this).   But recently I've been having more problems with an apparent candida/fungal problem than I probably have with porphyria, and the symptoms seem to be surprisingly similar to the porphyria/cytokine  reactions for me - fatigue, rashes, congestion, etc) so I've recently cut back to a more normal level of carbs to see if this helps.   I'm currently also about half way through another round of Fungal Defense (mostly oregano) and my increased fatigue, rashes, congestion, etc seem to be clearing up again.  Thanks again for your help in identifying this Jim.   

I only mention the candida/fungal issue in this thread because the symptoms for me are so similar (and very confusing for me) that I just assumed I was getting more of a porphyria/cytokine reaction.    But the fungal defense seems to be clearing it up again (a previous round a couple of months ago really seemed to help as well).  

Anyway, hope this helps Ron.   Hang in there.... 

 

 

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- Good to hear how you are doing. I'm in the same boat-- that coinfection with candida makes it hard to sort out from cytokine, porphyria and endotoxin reactions. Although now that I'm so much better from the Cpn, differential reactions are starting to stand out more as the strength of the Cpn symptoms overweighed everything else.

Combined Antibiotic Protocol for Chlamydia pneumonia in Chronic Fatigue Syndrome & Fibromyalgia- Currently: 150mg INH, Doxycycline/Zithromycin, 300mg Rifampin, Tinidazole pulses. Northern Ohio, USA

 

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

OK, I finally got around to looking into the issue of milk/lactose/lacoferrins and porphyria. I can not find ANY references in PubMed or via Googling that even hint that there might be a  connection between milk products and porphyria.

I can find nothing to support the statement in the Stratton patent:

"Milk products contain lactose and lactoferrin, and have been empirically shown to make symptoms of porphyria worse." 

With as many bona fide issues that we have to worry about regarding Cpn treatment, porphyria avoidance, porphyria amelioration, and well-understood diet issues such as high-carb diets, I think worry about milk consumption should be at the bottom of the list.

If dairy consumption doesn't seem to be a problem for someone, then it probably isn't a problem.

 

basil. 

If cats are outlawed, only outlaws will have cats.

I have to admit: if I'm going to cheat on my anti-porphyria measures, a little butter on my beans or cream in my coffee really does not seem to have much impact. Overexertion, alcohol, and red meat seem to have much greater impact proportionally (or should I say "portionally"?) than dairy or sugar.

Sugar seems to be halfway bad. A very little doesn't have much impact, but too much seems to aggravate any porphyria that I'm having. Glucose really does help me, short term, and charcoal seems to help in prevention more than in recovery. 

In fact, for me, very much meat of any sort is a mistake during a pulse. I usually don't feel like it anyway.

>>>>Conclusion?>>>>>

I guess since Stratton says it's empirical, we can determine our own results the same way, just this once.

>>>>>New topic? >>>>>

Here's a thought: since Stratton designed the original CAP as a continuously increasing regimen, and porphyria is so cumulative in nature, perhaps more stringent prevention was needed. There was never any time that porphyrin production fell off enough to gain on it with charcoal, etc.

With the pulsed approach, the inter-pulse time allows the porphyrins created during the pulse to be cleared. A little milk or sugar isn't so important if you can clean out the resulting porphyrins in a day or two of inter-pulse time, but if they were followed by even more porphyrins, then the accumulation could be very important.

Ron

On CAP for CFS starting 01/06 (NE Ohio, USA)

Currently: doxy & zith -- continous; metronidazole -- 4days on, 7 days off.

Ron

On CAP for CFS starting 01/06 (NE Ohio, USA)

Began rifampin trial 1/14/09

Currently: on intermittent

I have been searching this site for info about complete avoidance of dairy products while taking Doxy or Mino.  Is there a concrete rule that they are not allowed?  I have found mixed opinions.  I didn't see anything about it in the CAP Handbook.  My Dr says no dairy within 2 hrs of Mino, but that it is fine otherwise.  I don't see how it could interfere as long as this guideline is followed?  I know that some people feel that dairy should be avoided because of Porphryia,  but I don't have a problem with it causing me any Sx's. Any comments appreciated.

Hi Mrs Charles,

We have just been upgrading the website and our search facility is temporarily missing, so I can't direct you to the pages where this has been discussed.   As far as I can remember the issue of dairy and doxycicline is out of date information.   There is apparently no longer any need to avoid dairy when taking doxycycline, I don't know about mino though.   I'm sure some knowledgeable people will get back to you about this.

Michele: on Wheldon protocol since 1st May 2006 for a variety of long standing ailments including IBS, sinusitis, alopecia, asthma, peripheral neuropathy, also spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMS

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

Welcome, Mrs C So glad you have found us. The only guidelines I follow are the ones that say not to take Doxy within 2 hours of calcium or magnesium. I know many people have food with Doxy but I never have. And then I wait 1 hour after my abx to eat. Having grown up in West Texas on Mexican food I could never give up my cheese and then we have our fresh goat milk always available. (Can't get this to work right yet, but I will!)

 

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 35 pulses NC USA

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

We've been assured by our resident industrial pharmacist (http://www.cpnhelp.org/doxycycline_patient_infor) that it's just fine to take doxy with milk products. The original warnings against it were related to tetracycline, the first from which doxy and mino were developed, but these later cyclines are not interfered with as much.

Most of us find that we can't tolerate doxy without food, and some have developed gastritis when doing it on an empty stomach. So if you are sensitive to it, use it with food including milk.

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! abou

 

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

This is really a good news. Pharmacists usually tell people to take it on an empty stomach. I know that if I've done it I would throw up one hour later. I will not waste my breath any more explaining intricacies of feasting on Doxycycline. Splendid. Barbara.

Cured of multiple sclerosis, stopped the Wheldon's protocol in Nov,2008. Use only LDN.

Just testing. I am delighted. I don't have to use Netscape any more. After the restoration Safari is competible with this webside. Oops! My signature too long.

Cured of multiple sclerosis, stopped the Wheldon's protocol in Nov,2008. Use only LDN.

Lifeontheice- Great to hear that Safari works with the text editor now. I've also found that for the Mac both Firefox and Camino have been great. Camino used to be faster, but the latest Firefox is lightening fast. Both are speedier than Safari for me. Yeah, Netscape is very old-tech and a pain. You might experiment with Firefox-- lot's of neat add-ons too. 

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! abou

 

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

I agree with Jim, Firefox is great and very friendly. I like the wide choice of add ons. I have a clock on mine that shows me when you Stateside people are asleep...

Michele: on Wheldon protocol since 1st May 2006 for a variety of long standing ailments including IBS, sinusitis, alopecia, asthma, peripheral neuropathy, also spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMS

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

I've resurrected your old thread here Ron as I've been looking for evidence that lactose and lactoferrin cause or worsen porphyria and like Basil earlier can't find anything at all to support this, have you found anything?

I've been reading and chasing up leads for about 3 days (sad I know) but all I can come up with is that while lactose may be hard for adults to digest  lactoferrin can only do us good.  It seems to be antibacterial, antiviral, antioxidant......see here

http://www.nationaldairycouncil.org/NationalDairyCouncil/Health/Digest/dcd72-2Page4.htm

 

IT EVEN BINDS LPS......

Lactoferrin will bind LPS
Identification of lipopolysaccharide-binding proteins in porcine
milk.
Author: Shahriar F , Gordon JR , Simko E
Source: Can J Vet Res, 70(4): 243-50 2006
Service Fee: $12.00 ; Copyright Royalties: $6.00
Abstract: Septicemia and endotoxemia initiated by bacterial
lipopolysaccharide (LPS) are relatively common in suckling and weaned
piglets. Maternal milk is a source of both nutrition and immune
protection for piglets. Passive transfer of colostral antibodies is
necessary for protection of neonatal piglets against diseases, but
the concentration of immunoglobulins in milk rapidly declines during
the 1st wk of lactation in all mammals. We hypothesized, therefore,
that nonimmunoglobulin substances in milk contribute to the innate
protection of neonates against septicemia during the suckling period.
Using LPS-affinity chromatography for isolation of LPS-binding
proteins and liquid chromatography-mass spectrometry for their
identification, we identified in porcine milk the following proteins
with LPS-binding capacity: lactoferrin, soluble CD14, serum amyloid
A, alpha-S1 casein, beta-casein, and kappa-casein. For lactoferrin,
alpha-S1 casein, and kappa-casein, in vitro pepsin digestion did not
inhibit LPS-binding activity, whereas combined digestion with pepsin
and pancreatin abolished it. The biologic functions of these LPS-
binding proteins and peptides were not determined

 

So what is the problem with it?   I tried to find out because I'd been avoiding all dairy and that didn't seem to have any effect on porphyria symptoms, which I seem to have at a low level almost all the time.   Just before my latest pulse  I started to eat home-made yogurt, high in lactoferrin but lactose free, mainly for the probiotic properties and didn't have any increase in porphyria symptoms during the pulse or in the week following and also seemed to have less problems with clearing the die-off symptoms.   So is it just a personal thing and not related to porphyria at all?

My other reason for asking is that a friend I referred to this site is vegetarian and almost lives on dairy products so this aspect is making her nervous about starting a CAP.   As you noted Ron there is quite a resource building up here for prospective CAPers so it would be useful to clear this up.

Is there any way to find out from the Vanderbilt doctors  (Jim?) whether they still advise avoiding dairy on the CAP and why .....because missing out on lactoferrin would seem to be quite a loss.

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.

I may be speaking with insufficient information since I did not read this thoroughly but as one who during all this 21/2 years of treatment have never lowered my intake of milk and cheese. My ability (?) may be because most of my chesse intake and all of my milk is that it is goat. 70% of people who can't tolerate cow milk have NO problem with goat milk. Also it is the milk of choice for all orphaned mammals.

 

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 40 pulses NC USA

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Hi Rica,   I used to use goats milk all the time (until my friendly local goat keeper got clobbered by EU rules and regulations)  because it is so much easier to digest than cows milk, it has less lactose but I don't know about the lactoferrin content.....makes good yogurt though.   

 However the instruction in the Cpn Handbook just says to avoid milk products ''milk products contain lactose and lactoferrin, both of which should be avoided as much as possible''  .......  so I'm wondering why?

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.

I'll weigh in here, too. I have NEVER changed anything about my food intake since starting the protocol. Cheese, milk, whatever. (I did eliminate nutrasweet/aspartame.) I've had no negative effects from this.

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

Elinor, no one has cited any published data indicating that lactose or lactoferrin are potent promoters of porphyria.

I am approaching it empirically; the closer to the ice cream stand, the less important the impact of milk products seems to be. Odd.

Still, I am unwilling to just set the advice aside completely -- Stratton has presumably seen as many people through the protocol as has anyone except perhaps D W.

 Ron

On CAP for CFS starting 01/06 (NE Ohio, USA)

Currently: doxy & zith -- continous; metronidazole -- 5 days on, 7 days off.

Ron

On CAP for CFS starting 01/06 (NE Ohio, USA)

Began rifampin trial 1/14/09

Currently: on intermittent

Elinor,  This may or may not have anything to do with prophyria.  For what it's worth, casein may be a culprit for some individuals.  While I drink a whey protein shake twice a day, I keep it away from Steve due to casein sensitivity.  Casein abstinence or avoidance is something Steve's doc recommends for many of his patients.  The supplement I mentioned in an above comment is serum derived, and we depend on it to help Steve the way the whey protein helps me.   Goat milk has minimal casein content, a characteristic which I believe makes it so universally tolerated.  As another native Texan, I have to agree with Rica's choice about cheese---Tex-Mex food is irresistable, and it has to have cheese in it and on it.  Steve is a transplanted yankee, but he loves it as much as a native.  That's why he is only a casein avoider instead of a casein abstainer---Tex-Mex is too good.

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. 

Monocycline - To reduce the risk of oesophageal irritation and ulceration, the capsules should be swallowed whole with plenty of fluid, while sitting or standing. Unlike earlier tetracyclines, absorption of Minocycline is not significantly impaired by food or moderate amounts of milk - that is the official guidance, which is similar to Doxycycline.  The risk of oesophageal irritation and ulceration is real with both drugs, so please avoid taking them, then lying down for 30 mins.  ...... Mark - pharmacist, lurker on site 

Mark Walker - Oxford, England.

RRMS since 91, Dx 97. CFS from Jan03. DW Patient - Jan06, started emp CAP(DW) in Feb06, with Copaxone Feb06. Pharma Consultant (worked til Jan 03).

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.

Thanks for weighing in with your experiences on this everyone, you have managed to reassure my friend that she will be able to do the CAP and still be able to eat, she has MS so she needs to start soon.

I like your take on it Ron, that's a very strange effect isn't it?  I don't like ice cream but the cheeseboard does the same to  me.   After missing out on cheese for a while it's great to indulge again and   Tex Mex sounds so tempting,    my daughter stayed in Dallas last year Joyce  and she loved the food.

Did Robert Browning  struggle with porphyria too?

http://www.bartleby.com/101/720.html

 

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.

I didn't bother to say anything here before, because I have never really been troubled with secondary porphyria and never really changed my diet.  DW tried to make me eat more carbohydrates at first, because, being new to this, he thought he ought to, but soon gave up.  It does seem that with MS the pathogen tends to be concentrated in the CNS and so, unless your friend suffers from many other things as well, secondary porphyria is likely to be less of a problem.By the way, porphyria wasn't a named disease until after Browning's time, so I guess he was referring to a person named Porphyria, after the purple stone...........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.
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.

Porphyria, does paly a role in Ella's treatment side effects, not as severe now as in the beginning, but certainly noticeable.   So maybe as in every other instance of treating this disease, there are individual differences depending on the load and the length of time infected.  Ella has the CNS involvement but also skin, lung and sinus.

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

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

Of course, everyone is different, but porphyria does seem to be less of an issue with people with MS as a whole.  For instance, I have never had sinusitis, but I seem to be in the distinct minority here, amongst every form the pathogen takes.  Some people have thought that they can't have a CPn infection because they have never had sinusitis.........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.
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.