Joyce - Don't know if anything in this thread helps.  It's not your exact question but sort of close -  sorry if you have already seen this thread.

I have to admit I was disheartened to learn how long I might be doing daily battle with porphyriai [2] for my husband.  But the responses kindly posted in answer to my question have also have helped me resign myself to the need for vigilant daily measures for the forseeable future.  Ughhhhhhhhhhh...

^{http://www.cpnhelp.org/porphyria_question_for_th [9]} 

^{Daisy - Husband on CAPi [1] 5/07.   Roxyi [10], Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxyi [11], Azithromycin, Flagyli [12], Minoi [13]}

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Daisy - Husband on CAPi [1] 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

Ahhh, yes, I remember that thread now, and it goes most of the way to answer my question.  I suppose I'm hoping someone will conjecture a total evaporation of porphyriai [2] when we all find our pot of gold at the end of the rainbow.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [3]).  CAPi [1] since August 06, Cpni [4], Mpn, B. burgdorferi, systemic candidiasis, EBVi [6], CMV & other herpes family viral infectionsi [8], elevated heavy metals, gluten+casein sensitivity. 

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [3]).  CAPi [1] since August 06, Cpni [4], Mpn, B. burgdorferi, systemic candidiasis, EBVi [6], CMV & other herpes family viral infectionsi [8], elevated heavy metals, gluten+casein sensitivity. 

I've been wondering whether secondary porphyriai [14] is something that a number of us might have been suffering from even before we started the CAPi [1].   I know that it is not easily recognised by doctors unless it is a very serious complaint, but maybe a number of people have a low level of chronic porphyria that does not manifest in recognisable porphyric symptoms, but may be causing things like chronic pain in the gut, called IBSi [15] for want of a better word.  There is little doubt in my mind now, that porphyria is a real player during the process of getting rid of Cpni [4], but what makes it difficult for us to realise this is that even a low level of porphyria before treatment might well be getting symptoms that make it difficult to recognise it once treatment has started.

If it is present before CAP then either we must identify and rectify the initial problem or we will have to continue getting treatment for the rest of our lives and be more assiduous with controlling it during the CAP.

Michèle (UK) GFAi [16]: Wheldon CAP 1st May 2006. Daily Doxyi [11], Azi MWF, metroi [12] pulse. Zoo keeper for Ella, RRMSi [17], At worse EDSSi [18] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi [16]: Wheldon CAPi [1] 1st May 2006. Daily Doxyi [11], Azi MWF, metroi [12] pulse. Zoo keeper for Ella, RRMSi [17], At worse EDSSi [18] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

It took about two years for me to come out of the secondary porphyriai [14] misery. It was not consistent and I never knew when it would hit. Symptoms: super sensitive to sound and light heat sensitive massive fatigue feeling like I couldn't get enough air in my lungs aches and pains nausea touchy and emotional Drinking lots of water and going outside to breathe the sea air really helped. I also used lots of B12 shots as well as deep Yoga breathing, charcoal, C and glucose tabs.And Epson salt baths for the aches and pains. I also avoided the dietary triggers such as red meat and alcohol. As the bacterial loadi [19] goes down, expect to see a resolution of the porphyria symptoms. Hang in there. Maybe a little Yoga would help--especially the breathing exercises! At the present time, it doesn't seem to affect me any more at all. Raven CAPi [1] since 8-05 for Cpni [4] and Mycoplasma P. for MS and/or CFSi [20]

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Feeling 98% well and going for 100! Still testing + for Cpni [4] since June '08.CAPi [1] since 8-05 for Cpn and Mycoplasma P. for MSi [21] and/or CFSi [20]. Also EBVi [6] and HHV6 NACi [22], Iodoral, T3, BHRT, Methylcobalamin injections, Nitro patch, LDNi [23] and Methylation supplementsi [24]

Michele,  Yes, and here's an oddity that applies to me and others who are even slightly diabetic:  the elevated blood glucose level in diabetics puts the squash on porphyriai [2].  I've observed this in myself.  When my blood sugar is too high, I may get hot flashes, but otherwise I generally feel well and sharp.  When I've been eating as I should, I get cranky and tired, and my urine goes foamy.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [3]).  CAPi [1] since August 06, Cpni [4], Mpn, B. burgdorferi, systemic candidiasis, EBVi [6], CMV & other herpes family viral infectionsi [8], elevated heavy metals, gluten+casein sensitivity. 

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [3]).  CAPi [1] since August 06, Cpni [4], Mpn, B. burgdorferi, systemic candidiasis, EBVi [6], CMV & other herpes family viral infectionsi [8], elevated heavy metals, gluten+casein sensitivity. 

 I'll echo Raven's response. Almost never a bother for me. The only exception is when doing something that ramps up the bacterial kill, like adding Rifampin. Even then the porphyriai [2] part was quite manageable, it was the inflammationi [25] and the like that was the bugaboo. It was only after the fact that I realized I wasn't "needing" smarties at all-- a bag remained unused for example-- nor cholestyramine except during pulses, so it's hard to mark exactly when. I think the past year it waned significantly after a patch of it in the fall. 

CAPi [1] for Cpni [4] 11/04. Dx: 25yrs CFSi [20] & FMSi [26]. Protocol: 200mg Doxyi [11], 300mg Roxithromycin, Tinii [27] 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

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CAPi [1] for Cpni [4] 11/04. Dx: 25yrs CFSi [20] & FMSi [26]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [27] 1000mg/day pulses; Vit D2000 units, T4 & T3

Thanks guys, that's really encouraging!

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [3]).  CAPi [1] since August 06, Cpni [4], Mpn, B. burgdorferi, systemic candidiasis, EBVi [6], CMV & other herpes family viral infectionsi [8], elevated heavy metals, gluten+casein sensitivity. 

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [3]).  CAPi [1] since August 06, Cpni [4], Mpn, B. burgdorferi, systemic candidiasis, EBVi [6], CMV & other herpes family viral infectionsi [8], elevated heavy metals, gluten+casein sensitivity. 

I have been reading about porphyriai [2] symptoms this week after experiencing suicidal ideation and crying for most of a day!  This is very unlike me.  I'm downing gatorade and lots of fluids and hoping to pick up some glucose tablets.  I've also decided to switch over to more carbohydrates in my diet.  Following advice on this web site I requested my doctor run the porphyria tests before we started the CAPi [1].  These were normal.  Can they be normal in secondary porphyriai [14] even when you are having symptoms? (I guess what I am asking there is should we keep checking these levels?)  Is the condition harmful or just uncomfortable?  And, is this depression typical of porphyria or die-off?  In 22 years of CFSi [20] I haven't been depressed so something has changed.

 Also, another question off the porphyria topic:  In trying to piece this protocol together I read something that lead me to think I should start with NACi [22] then Azith.  I'm up to 2400 NAC/day and 2 Azith/week.  When should I add Doxyi [11] and how much at a time?  Thanks!!

CFIDS since '85 CAP begun 4/08.  NAC 2400/day; Azithromycin 2x/week.

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CFIDS since '85 CAP begun 4/08.  NACi [22] 2400/day; Azithromycin 2x/week.

hello susan, poryhyria symptoms can be v. difficult at times; in a way when you're through with them you can forget how rough they were, even after a day or two later. 

There are lots of anti-poryphoria measures suggested throughout the site, apart from drinking water.  I take 12 + charcoal tablets 3 hours away from medication or supplementsi [24], twice a day if things are getting really bad.  As  you say the glucose supplementsi [28], perhaps in Emergen C drinks can really help.  Plus hot baths.  Plus painkillers.  At least thats what i do.  If things get worse I do a vitamin C flush (bufferred vitamin C powder in water).  Other people find other methods that suit them, a bit trial and error.  It usually really helps to do these things and if you look through the site or do a search in the corner (right hand) you will get more info. 

Re. the choice of antibioticsi [29] and how to do them, can I suggest the Wheldon Protocol, which you will also find on the site if you search for it.  It is very clear.  Or else look in "Getting Started", a new addition for people starting out.  You also might find some anti-poryphoria  measures there.  I do think you really need to study the protocol to get a correct understanding of what antibiotics are required at the very least, and how to begin taking them.

All best wishes for the start!

M.E./CFSi [20] 20 years, intermittent.  Wheldon Protocol - Started NACi [22] and supplements Sept 2007. Doxyi [11] and Roxy full dose by Dec '07.  First Flagyli [12] pulse January 2008.

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M.E./CFSi [20] 20 years, intermittent.  Wheldon Protocol - Started NACi [22] and supplementsi [24] Sept 2007. Doxyi [11] and Roxy full dose by Dec '07.  First Flagyli [12] pulse January 2008.

 Susan -

Secondary porphyriai [14] can be difficult to detect via laboratory testing.  Dr. Stratton writes about it in detail in his original patent if you are interested. 

The symptoms you describe here can very much be porphyria.  Leaving porphyria unchecked can indeed be harmful. 

One remedy you could begin today would be Activated Charcoal.  You can pick it up at virtually any drug store.  Many here take 3 grams (12 - 250mg) charcoal pills at a time at least 2 hours before or after medications and food.  Many here take it at night at bedtime or during the night if they get up to use the restroom.

My husband tested normal on pre-CAPi [1] porphyria testing but he has definitely had some rather intense porphyria as treatment has progressed. 

Re the antibioticsi [29], you might continue to work up to azithromycin 3 times per week - Mon, Wed, Fri  and make sure your porphyria symptoms are well under control before you add doxyi [11] to your regime.

Very important to get any porphyria under control as it will continue to accumulate and the symptoms will usually get worse.  I can't stress that enough from the school of hard knocks. 

Best of luck with your treatment ! 

^{Daisy - Husband on CAP 5/07.   Roxyi [10], Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxy, Azithromycin, Flagyli [12], Minoi [13]}

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Daisy - Husband on CAPi [1] 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

Susan, The protocol is clear about not bringing in any new meds until you aren't having negative reactions to existing meds. You're definitely having negative reactions and shouldn't be thinking of throwing anything else into the game until you're feeling more 'normal'. I see you're at the max on NACi [22] and have worked up to two zithi [31] a week. Maybe hold at the two zith and work on anti-porphyrics first, then add the third zith, minding your reactions closely. I wouldn't even think about doxyi [11] yet.

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

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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

Thanks for all the help, especially the advice to hold off adding the doxyi [11] and more azith until I'm more stablized.  I've read about the charcoal, of course, and just hate the thought of downing that many more pills of any kind and of making sure they are not interfering with everything else.  Taking them late at night sounds like a winner to me.  I hate to be a whiner, but I want this to be easier!!  Haven't I already paid my dues raising three children with CFSi [20] for 22 years!?  And I want to proceed lickity split!  I need the reassuring "voices" of people who have been there. Thanks.

 I have read and read on this website yet I still have questions and sometimes, I guess, one just needs to hear something one more time or have it directed specifically to their own situation.  Especially I guess, when it entails something as pleasant as downing 12 black charcoal pills!!  

CFIDS since '85 CAP begun 4/08.  NACi [22] 2400/day; Azithromycin 2x/week.

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CFIDS since '85 CAP begun 4/08.  NACi [22] 2400/day; Azithromycin 2x/week.

Susan,  Charcoal is not grizzly like it sounds.  It's in easy to swallow capsules, very light weight.  I can swallow 4 at a time with a swig of water.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [3]).  CAP since August 06, Cpni [4], Mpn, B. burgdorferi, systemic candidiasis, EBVi [6], CMV & other herpes family viral infectionsi [8], elevated heavy metals, gluten+casein sensitivity. 

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [3]).  CAPi [1] since August 06, Cpni [4], Mpn, B. burgdorferi, systemic candidiasis, EBVi [6], CMV & other herpes family viral infectionsi [8], elevated heavy metals, gluten+casein sensitivity. 

Susan,

welcome to our predicament.  Girl, I take 5 piles of supplementsi [24] totalling about 100 capsules a day!  Throw a pile in & down the water!  This is a means to an end.

Please check our list of reactions & treatments & have them on hand.  These reactions are not to be taken lightly.  You must help your body rid itself of the toxins.  You must ramp up this protocol SLOWLY, it is not something that can be rushed!

Blessings for your wellness journey

CFIDSi [33]/ME 26yrs, FMSi [26], IBSi [15], EBVi [6], CMV, Cpni [4], chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi [22] 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#9 750mg 5.5 day, 4-25-8

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CFIDSi [33]/ME 32 yrs, FMSi [26], IBSi [15], EBVi [6], CMV, Cpni [4], chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#15 750 mg X 5 days 11-1-08

Susan,

 Porphryia tests can be normal even in someone with any of the genetic porphyriai [2] UNLESS they are having an exasperation at the time of the test.  Also, for the eleven or so "regular" porphyriasi [14], 24 hour urine, 24 hour stool collection and blood are required for the testing.  It can truly fluctuate.

There are some genetic tests now, too, at the site below.    

The American Porphyria Foundation has a Beta Carotene product.  It's more synthetic than I would like, but you might take a look at it and ask your doctor about beta carotene in general as it is one treatment for porphyria to get the porphyrins down.

 

http://www.porphyriafoundation.com/

AMERICAN PORPHYRIA FOUNDATION

The product is called LUMITENE.  It's very spendy but, again, you might yet your doctor's input.

 hope you feel better. 

 sorry type size is eratic.

Susan, your pharmacy or health food store should sell Glucose in powdered form. I bought that and I use it in drinks instead of sugar. You can also sprinkle it on food. It's nowhere near as sweet as refined sugar.

I also take Yaeyama Chlorella. If you don't fancy the idea of Charcoal caps then it's an alternative. I keep the charcoal caps in case I get really whacked. So far haven't needed them.

I know there's a lot of pill popping but if you're taking all the recommended supps, plus the others listed in the Getting Started section it should help. I was taking them for weeks before I started on the abxi [29] and I've had very little in the way of problems. That may just be me or it may be I'd built up a level of pretection. I do know that if I run out of my Chlorella I feel a bit off until I get the next batch.

If you hunt around for the high strength pills then you can cut the number you have to take down. If you click my name I have a list of all the supps I take with links to where I buy them. I'm still checking regularly to see if I can replace 4 pills of x a day with 1 pill of a higher concentrate, or a combination of supps in 1 pill and to see if I can get better deals.

Berkshire, UK. Diagnosed RRMSi [17] Feb 4th 2008.

NACi [22] 2400mg. All supplementsi [24]. Doxyi [11] 200mg. Zithi [31] 250mg M/W/F.
No GP/Neuroi [35] support. Self medicating with help from David Wheldoni [36].
Started CAP 20th April 2008.

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Berkshire, UK. Diagnosed RRMSi [17] Feb 4th 2008.

NACi [22] 2400mg. All supps. Doxyi [11] 200mg. Zithi [31] 250mg. Metroi [12] 400mg.
No GP/Neuroi [35] support. Self medicating with help from David Wheldoni [36].
Started CAPi [1] 20th April 2008. First pulse June 2008

keebler, Thanks for your post.

Louise

CFSi [20]/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi [11], Roxi, Full TiniPulses. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

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Louise  CFSi [20], CPN+/Bb+,Wheldon CAPi [1] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [2] & Endotoxinsi [37] PRN, Doxyi [11] 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

I agree that you can have secondary porphyria before starting the CAPi [1].  The porphyric reactions that Paula has that are controlled by the charcoal now are exactly the same as she had prior to CAP, especially the mental and gut pain issues. 

UK Carer of bedridden Severe ME/CFS Feb06. CPNi [4] dx. Apr07. Samento 15 drops per day July07.  2400mg NAC 200mg Doxyi [11] Jan08.  300mg Roxyi [10] Apr08.

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UK Carer of bedridden Severe ME/CFS Feb06. Bitten by ticks Summer 04.  CPNi [4] dx. Apr07. Borrelia dx Sept08. Samento 15 drops per day July07.  2400mg 1200mg NAC 200mg. Doxyi [11] Jan08.  75mg Roxyi [10] Nov 26th 08

Keebler, I think I made a connection from your mention of Lumitene, the beta carotene derived product.When I first became ill, I tried drinking fresh carrot juice when I felt those symptoms I now know as secondary porphyriai [14].I would feel better almost immediately. So maybe that is a home remedy that would work. Juicing carrots takes time and if you drink lots of carrot juice, make sure it is organic. Something for Daisy to try???? Raven CAPi [1] since 8-05 for Cpni [4] and Mycoplasma P. for MS and/or CFSi [20]. Also EBVi [6] and HHV6

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Feeling 98% well and going for 100! Still testing + for Cpni [4] since June '08.CAPi [1] since 8-05 for Cpn and Mycoplasma P. for MSi [21] and/or CFSi [20]. Also EBVi [6] and HHV6 NACi [22], Iodoral, T3, BHRT, Methylcobalamin injections, Nitro patch, LDNi [23] and Methylation supplementsi [24]

Beta Carotene is the ONE thing my doctor told me to do when I was dx with 2 kinds of chronic porphryias.  It's in the medical literature as a treatment.  Partly, it provides a sugar (too much for some people) and it is an anti-oxidant.  

Of course, there may be other things that work similarly (turmeric is sparking my interest of late and I've often wondered if the sugars in medical mushrooms might help as I feel great when I use them but there can be other reasons for that.)

Fresh, ORGANIC carrot juice with a protein powder - and sometimes a greens powder or FRESH GREENS juiced in to - the protein powder is more easily digested (than would be meat protein) and it with the greens help keep blood sugar from sharp raises and drops - adding flax seed meal may also help keep it from being such a rush.  Greens also contain beta carotene and less sugar.

 Carrot juice used to keep me alive.  I can no longer do that (physical endurance required) but I do take a greens powder called GREEN VIBRANCE by Vibrant Health.  It has lots of good probiotics and plenty of beta carotene.  Amazon has the best prices, but it is spendy.  It also has a little schizandra in it and that is very good for the liver to help produce glutathione to add in decreasing porphryins.  The amount of schizandra, though, is a little lower than what I'd like so I add a supplement.

I'd advise being sure to look at the label if you buy a commercial carrot juice product as sometimes lots of other stuff is added.  Steer clear of white grape juice - UNLESS it's organic.  Grapes are loaded with pesticides.  When you buy carrot juice in the refrigerated cases, try to get it from a local or regional distributor and be sure it does not have the white thickening at the bottom of the bottle.  That means it's not the freshest, even if the expiration date is still good.

Having it with other food is a good idea as carrot juice, alone, can raise blood sugar and the other juices sometimes added to carrot juices can really shoot the blood sugar to the moon.   Getting FROZEN carrot juice is a good idea to be sure it's fresh, but some say the freezing destroys enzymes.   Still, it has made me feel much better - good when visiting relatives so you don't have to juice.

 Organic is important - my liver doctor told me - as farm chemicals on conventional produce add a toxic burden to the liver, hence porphyrins can be raised from that.  

One of the best juicers I've had - and the quietest - is the Jack LaLane juicer of about 6 years ago. They look the same now.  VITA MIX - if one can afford it and stand the noise - is the best idea yet, as all the food is juiced and no pulp removed.  Please wear EAR PROTECTION when operating any juicer. It matters.

But a note here about portions.  The juice bars that are so popular (and use mostly NOT organic produce) make servings that are FAR too large.  The info-mercials for juicers, too, show people drinking a ton of calories in one huge glass.   The old juice glasses of 4-6 ounces should be brought out of the attics.   Or just juice one-two carrots, adding the pulp back into the juice. 

All this said, I had forgotten about charcoal so am delighted to have been reminded of that, too, for the tool chest, so to speak. 

 

Keebler and Raven thanks for telling about carrot juice for porphyriai [2]!

Started to drink it yesterday...

Maria