Maria- it could be the sugar rather than the carrot specifically. Carrot juice is pretty sweet and carb intensive. A readily assimilable dose of sugar can ease porphyriai [1] just like glucose tabs.

CAPi [2] for Cpni [3] 11/04. Dx: 25yrs CFSi [4] & FMSi [5]. Currently: 300mg BID Roxithromycin, Bactrim DS 2x/day, Tinii [6] 1000mg/day pulses; Vit D2000 units, T4 & T3

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CAPi [2] for Cpni [3] 11/04. Dx: 25yrs CFSi [4] & FMSi [5]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [6] 1000mg/day pulses; Vit D2000 units, T4 & T3

Yes,you are right Jim it can be the sugar. But if I remember it correctly it was another member that wrote that BetaCarotene can help with porphyriai [1] also.

Maria

You may be the perfect experimental subject to test this on: carrot juice one day, some other juice the next day, repeat. Tell us if you find a noticeable difference! I'd dearly love to know if it really helps with porphyriai [1] specifically! 

CAPi [2] for Cpni [3] 11/04. Dx: 25yrs CFSi [4] & FMSi [5]. Currently: 300mg BID Roxithromycin, Bactrim DS 2x/day, Tinii [6] 1000mg/day pulses; Vit D2000 units, T4 & T3

___________________________________________________________

 

CAPi [2] for Cpni [3] 11/04. Dx: 25yrs CFSi [4] & FMSi [5]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [6] 1000mg/day pulses; Vit D2000 units, T4 & T3

Maria, How do I know if I have porphyriai [1]? I have been on the NACi [7] for 3 weeks now with only tiredness as a symptom. I am also starting the Azithro/Doxyi [8] cycle (1 wk) with some nausea, but wonder if I am not missing something concerning this issue first.

 

Lyle... 

 

 

reiters syndrome arthritusi [9],herpes,bronchitus... beginning weldon protocol 5/29/08, Doxy 100mg daily, Azithro 250mg MWF and NAC 1000mg daily...Flagyli [10] to follow

___________________________________________________________

reiters syndrome arthritusi [9],herpes,bronchitus... beginning weldon protocol 5/29/08, Doxyi [8] 100mg daily, Azithro 250mg MWF and NACi [7] 1000mg daily...Flagyli [10] to follow

I will see what juice I can find!

Since I have not found a doc yet for capi [2] I can do the juice protocol...

But the problem is that I like my carrot juice so much!

Please join also the carrotjuice protocol!

Would be nice to hear if it helps!

Maria

Hi Lyle,

well im not an expert but from what I did read can nuasea and feel tired be secodary porphyriai [1] symtoms. You can read more in Getting started section.

So if you have symtoms from toxins and porphyria is it wise to not rush with your protocol. Also read what to do to help your body with this, otherwise things most likely will get worse when more cpni [3] dies.

Good luck!

Maria

Maria - I am so happy the carrot juice is working for you as Raven reported ! YAY ! 

I bought jumbo bag of organic carrots this past week but haven't juiced yet.  Your post is inspiring me too.  I have also ordered the Lumitene that Keebler referenced as well.

^{Daisy - Husband on CAPi [2] 5/07.   Roxithromycin, Minocycline, Rifampin, Bactrim DS, Mepron, Prednisone, Novantrone, Doxyi [8], Azithromycin, Flagyli [10], Diflucan}

___________________________________________________________

Daisy - Husband on CAPi [2] 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

Thanks Daisy, hope it works..

Do you have a link about this Lumitene, from where to buy it? Would be nice to read more about it!

I think with this terrible cpn one must work from every corner, anything that helps(food, supplementsi [12],good sleep and so on). It will make us better if we take care of ourself in anyway we can!

Im very intrested in this and since beeing sick its even more important and will make us healthier faster!

Thanks again,

Maria

I seem to have missed the post about lumitene and would appreciate the link too. 

Louise USA.CFSi [4].CPn Positive.BbPositive.WheldonCAP6/24/07.NACi [7],Doxyi [8],Roxi, Tinidazole Pulses. VitD-3,4000IU. Intermittent Cholestyramine 1-2 packets atbedtimewithpulses&asneeded forporphoria&endotoxinsi [13]. 

___________________________________________________________

Louise  CFSi [4], CPN+/Bb+,Wheldon CAPi [2] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [1] & Endotoxinsi [13] PRN, Doxyi [8] 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

Nausea can be caused by taking Doxyi [8]/Zithi [14] with no food. Eat something, a biscuit will do, then take the abxi [15].

Berkshire, UK. Diagnosed RRMSi [16] Feb 4th 2008.

NACi [7] 2400mg. All supplementsi [12]. Doxy 200mg. Zith 250mg M/W/F.
No GP/Neuroi [17] support. Self medicating with help from David Wheldoni [18].
Started CAPi [2] 20th April 2008.

___________________________________________________________

Berkshire, UK. Diagnosed RRMSi [16] Feb 4th 2008.

NACi [7] 2400mg. All supps. Doxyi [8] 200mg. Zithi [14] 250mg. Metroi [10] 400mg.
No GP/Neuroi [17] support. Self medicating with help from David Wheldoni [18].
Started CAPi [2] 20th April 2008. First pulse June 2008

Hello Lyle... the porphyriai [1] can sneak up on you if you're not careful..... I know I got wacked with it terribly because I was not diligent with my supplementsi [12]....

There's some good info in the Getting Started (blue tab at the top) [19] on porphyria such as: 

Symptoms of Porphyria- 

Porphyria may affect the nervous system or the skin.

When porphyria affects the nervous system, it can cause:

• chest pain
• shortness of breath 
• abdominal pain
• nausea
• muscle cramps
• weakness
• hallucinations
• depression
• anxiety
• paranoia
• seizures

When porphyria affects the skin it can cause:

• blisters
• itching
• swelling
• sensitivity to the sun (which also can be caused by some antibioticsi [15]i [15])
• purple-red-colored urine

 

 

Jeanneroz ~CPN diagnosed & started protocol  4/2007, also HV6, EBVi [20].  CFIDSi [21]/FM diagnosed: 6/07; 200 mg/doxyi [8]/day~ 250 mg AZITH M/W/F ~1st Tinii [6] pulse 4/17/08- 1 250 mg. tab for 2 days. 2nd Tini pulse 5/24/08: 1-250 mg 4 days,supplmnts

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JeanneRoz~CPNi [3] diagnosed & started protocol 4/2007, also HHV6, EBVi [20]. CFIDSi [21]/FM diagnosed: 6/07; 100mg/doxyi [8]/BID ~ 250 mg AZITH M/W/F ~1st Tinii [6] pulse 4/17/08- 1 250 mg. tab for 2 days. Pulse 5: 9/28/08, 250 mg TINI BID, 3 days. Sup

I did the same as Daisy after Raven's post.  Since Steve loves raw carrots anyway, he's been eating a gob of them everyday instead of drinking the juice.  His feedback was that he feels good on days when he eats the carrots, and his poop is softer (a good thing in his case).

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [22]).  CAPi [2] since August 06, Cpni [3], Mpn, B. burgdorferi, systemic candidiasis, EBVi [20], CMV & other herpes family viral infectionsi [23], elevated heavy metals, gluten+casein sensitivity. 

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [22]).  CAPi [2] since August 06, Cpni [3], Mpn, B. burgdorferi, systemic candidiasis, EBVi [20], CMV & other herpes family viral infectionsi [23], elevated heavy metals, gluten+casein sensitivity. 

Here is the Lumitene link"

http://www.cpnhelp.org/porphyria_over_time_on_a [24]_ 

 

 

Jeanneroz ~CPN diagnosed & started protocol  4/2007, also HV6, EBVi [20].  CFIDSi [21]/FM diagnosed: 6/07; 200 mg/doxyi [8]/day~ 250 mg AZITH M/W/F ~1st Tinii [6] pulse 4/17/08- 1 250 mg. tab for 2 days. 2nd Tini pulse 5/24/08: 1-250 mg 4 days,supplmnts

___________________________________________________________

JeanneRoz~CPNi [3] diagnosed & started protocol 4/2007, also HHV6, EBVi [20]. CFIDSi [21]/FM diagnosed: 6/07; 100mg/doxyi [8]/BID ~ 250 mg AZITH M/W/F ~1st Tinii [6] pulse 4/17/08- 1 250 mg. tab for 2 days. Pulse 5: 9/28/08, 250 mg TINI BID, 3 days. Sup

Thanks Jeanneroz for the link!

Very nice of you!

Maria

Thanks Joyce for your reply!

Think they will sell more carrotjuice and carrots in many contries tomorrow!!!

Take care,

Maria

Strangely enough, during pulsing and for a few days after the pulse  I had a craving for raw carrots.  In the beginning of the treatment I had to have Cranberry juice and it turned out that I had an urinary tract infection. I think one has to listen to ones body and react on ones instincts. Mine only fail when I have hallucinations of a nice big piece of cake.

Intresting!!

You are right we have to listen to our bodies and go with the instincts!

In almost any case..For cakes perhaps not every day!

But I know a carrotcake that is good!

Take care, Maria

 Maria - Couldn't agree more.  Not only do we have to listen to our bodies craving's but our instincts as well.   Mine said Lumitene might be a good bet for my ever growing porphyriai [1] arsenal. 

Some links:

http://www.skinsosmooth.com/lumporepp.html [26]

http://www.porphyriafoundation.com/about_por/types/types08.html [27]

 

 

 

^{Daisy - Husband on CAPi [2] 5/07.   Roxithromycin, Minocycline, Rifampin, Bactrim DS, Mepron, Prednisone, Novantrone, Doxyi [8], Azithromycin, Flagyli [10], Diflucan}

___________________________________________________________

Daisy - Husband on CAPi [2] 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

Another very potent antioxidanti [28] is the black raspberry. Here's a link for a freeze dried powder of the fruit. I use it every morning in my whey powder smoothie. Have also been mixing a tiny amount in with my morning moisturizer to help protect my skin. No, I'm not turning purple--just using a very small amount. Here's where I order from: http://www.nutrifruit.com/shopping/product_details.php?id=7 [29] Raven CAPi [2] since 8-05 for Cpni [3] and Mycoplasma P. for MSi [30] and/or CFSi [4]

___________________________________________________________
Feeling 98% well and going for 100! Still testing + for Cpni [3] since June '08.CAPi [2] since 8-05 for Cpn and Mycoplasma P. for MSi [30] and/or CFSi [4]. Also EBVi [20] and HHV6 NACi [7], Iodoral, T3, BHRT, Methylcobalamin injections, Nitro patch, LDNi [31] and Methylation supplementsi [12]

LINKS: Lumitene; beta-PLEX drops.  

Years ago, when I was dx with 2 types of chronic porphyriai [1], my doctor told me that beta carotene is one treatment.   So, carrot juice and other natural sources are good for that reason.  Green powders contain beta carotene, too.

 ========

Lumitene - one capsule = 30 mg. of pharmaceutical grade beta-carotene.  100 capsules per bottle

Lumitene is available through the 

American Porphyria Foundation:

http://www.porphyriafoundation.com/ [32]

Lumitene: 

http://www.porphyriafoundation.com/lumitene/index.html [33]

 ================================================================ 

Also to consider is "beta-PLEX" by Scientific Botanicals, Inc. - Seattle, WA  one drop= 15,000 IU beta carotene--mixed with vitamin E, olive oil, and soy oils.  1 fl. oz (30ml) bottle.  Refrigerate after opening.  beta-PLEX is much cheaper than Lumitene, but not as portable.   

 Google:   beta-PLEX "Scientific Botanicals" and several links pop up.  

The source I use is:

http://www.tahomadispensary.com/istar.asp?a=6&id=3305!162 [34]

- 

 

Search: Beta Carotene, porphyriai [1]

http://www.ncbi.nlm.nih.gov/sites/entrez [35]

PubMed Search:

porphyria, beta carotene – 88 abstracts

 -----------

Google Search:

porphyria, "beta carotene" – over 17,000 results

(keep in mind that there are at least 11 different types of genetic porphyria.)

-----------------------------------------------------------

through PubMed:

Ann N Y Acad Sci. [36] 1993 Dec 31;691:127-38. 

Carotenoids in erythropoietic protoporphyria and other photosensitivity diseasesi [37].

Mathews-Roth MM [38].

Channing Laboratory, Harvard Medical School, Boston, Massachusetts 02115.

Studies in bacteria, animals and humans have demonstrated that carotenoid pigments can prevent or lessen photosensitivity by endogenous photosensitizers such as chlorophyll or porphyrins, as well as by exogenous photosensitizers such as dyes (e.g., toluidine blue) or porphyrin derivatives.

The carotenoids beta-carotene and canthaxanthin have been found to be effective in the treatment of the photosensitivity associated with EPP and certain other photosensitivity diseases. No serious toxicity has been reported from their use, although the use of canthaxanthin is not recommended because of its propensity to form retinal granules.

The pigments (of beta carotene) perform their protective function by quenching excited species formed by the interaction of porphyrins or dyes, light and air, thereby preventing the cellular damage which leads to the symptoms of photosensitivity.

PMID: 8129282  

-------------------- 

-this particular abstract addressed only the symptom of photosensitivity, beta carotene has been a treatment for porphyria symptoms across the board for this and other types of porphryia (although it is most commonly used for the type that affects the skin with sun/light exposure).    

Ok, Carrots are bought juicer is out - I have cravings for carrot juice, i love it but its work to juice. I going to juice the whole bag on keep juice in fridge for a few days! On Wheldon protocol for MSi [30] since April, 2006.  doxyi [8] 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli [10] Pulses start end Sept., LDNi [31] 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30.

___________________________________________________________
On Wheldon protocol for MSi [30] since April, 2006.  doxyi [8] 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli [10] Pulses start end Sept., LDNi [31] 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30. Ma

 why ORGANIC foods matter - one illustration

http://www.porphyriafoundation.com/about_por/history.html [39]

excerpt:

Porphyria in Turkey 

In southeastern Turkey from 1956 to 1961, there were reports of an epidemic of PCT. Apparently, in 1954 the Turkish government distributed a supply of wheat seed that was treated with fungicides containing 10% Hexachlorabenzine (HCB).

It was originally intended for planting, but the shipment arrived too late in the season to plant. Because there was a limited food supply in the Turkish provinces of Dijarbakir, Mardin, and Urfa, the seed was unintentionally diverted for food production. It was difficult to quantify the extent and duration of HCB exposure from existing surveys, because the HCB-treated seed appeared no different from untreated supplies.

As many as 5000 individuals were reported to have been affected by the HCB treated seeds. They exhibited PCT-like syndromes as early as 1956. The government discontinued using the HCB-containing fungicide in 1959, but it was not until around 1961 that the PCT outbreak waned. Researchers from clinics near the areas began to trace the dietary histories of the affected individuals and discovered that it appeared as if the HCB had caused the acquired form of PCT.

 

Maria, Novel and wish I had thought of if early on. 

For me my liquid that worked for porphoria and fatigue was 7-UP. 

A real compromise as I had been sugar free for the most part since 1974!  

I may look for some carrot juice at the health food store to start.  

Always something to consider when browsing these pages! 

Thanks for sharing.

Louise USA.CFSi [4].CPn Positive.BbPositive.WheldonCAP6/24/07.NACi [7],Doxyi [8],Roxi, Tinidazole Pulses. VitD-3,4000IU. Intermittent Cholestyramine 1-2 packets atbedtimewithpulses&asneeded forporphoria&endotoxinsi [13]. 

___________________________________________________________

Louise  CFSi [4], CPN+/Bb+,Wheldon CAPi [2] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [1] & Endotoxinsi [13] PRN, Doxyi [8] 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

Thanks to all for your answers and good information and links!

So many nice and caring peple here!!

So happy my brother found cpnhelp.org!

Good luck to everyone with the carrotjuice!

Maria

Schisandra & C P-450 activity

 I have felt much better - and with fewer seizures when I take a formula with Schisandra extract.  I have a couple favorite ones but won't put those here.  Ask if you want info.  Most naturopathic physicians know of several formulas containing this.   If this is taken, be sure to have advice around timing of medicines as this may alter the levels of  certain medicines as do some other antioxidantsi [40] and liver supportive substances such as grapefruit and milk thistle.

From The One Earth Herbal Sourcebook -  by Alan Keith Tillotson, page 198

http://oneearthherbs.squarespace.com   [41]

SCHISANDRA BERRY (Schisandra chinensis) [42]  (also spelled Schizandra)

http://tinyurl.com/37uvrh  [43] 

excerpt:

• Male mice that received diets containing 5% schisandra berries exhibited a threefold increase in the important liver cytochrome P-450 antioxidant system (Hendrich et al., 1983). 

Equally important is the enhancing effect of schisandra on the status of liver mitochondria in rats (Ip et al., 1998).

============================================== 

Also see: Chinese medicine: Schizandra berry a potent adaptogenic herb

July 03, 2005 by: Dani Veracity

http://www.naturalnews.com/009229.html [44]

===============================

http://www.ncbi.nlm.nih.gov/sites/entrez [35]

PubMed Search:

Schizandra – 276 abstracts

Schisandra – 200 abstracts

Schizandra, porphyriai [1] - none

Schizandra, C P-450 – 3 abstracts

Schizandra, P-450 - 8

 =======================

Oh, and here's the link for one of my favorite green powders.  It also contains beta-carotene.

http://www.vibranthealth.org/gv.html [45]

Green Vibrance® - they also have other products - you can read all about them here.  

 It is available at many sites, including Amazon where I find the best price. Some natural foods groceries also carry this.  While it's not cheap - at all - I can't juice and this is my first breakfast of the day.  I find it helps.  KYO-GREEN is another greens food that I alternate as it is much more affordable.  But Green Vibrance also contains SCHIZANDRA (100 mg) and PROBIOTICS, and ENZYMES.  (I hold no financial interest in either company.)  

 It also contains spirulina - I have read about how that can help hemei [46] (which porpphyrins can challenge) but don't recall the details.  That would be another little foray into research sites - another time. 

 

 

Thanks Raven!

I take FlavonMax+ every morning. It has a lot of antioxidantsi [40] from diffrent berries. Its very good too. Did another post about it with a link.

Take care,

Maria

Keebler,thanks a lot for sharing all this great information with links also!

Really nice of you to share this since you know so much about porphyriai [1]!

Thanks a lot and good luck to you with your treatment.

Take care, Maria

    Keebler-I like your natural approach.  I too am tying the Bugs bunny test with the carrots. And have to say I feel a bit more energy and able to function better. My doctor also wants me to add  D Rebose as it helps to reproduce ATP production.             thanks for the info.

                                                    Bonnie
 

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started Wheldon capi [2] 4/21/08 for Cpni [3], CMV, EBVi [20], CFSi [4]. Currently on: all supplementsi [12],Doxy200, added Azith.250mgs M/W/F on 6/30/08. Naci [7] up to 1200mgs.as tol.

Jeanneroz, the link does not appear to work for me.

I get a "Page not found" message. 

--
Corinna. May 2008. NACx2400mg, D3x5000mg, B12x1000mcg. :: Allergies, Generalized Inflammationi [48]/Eczema, Chronic Sinusitis, BiLat/Trigeminal Neuralgia, FM, CF, Arthritis, Rosaceai [49].

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Corinna | GFAi [50]. Wheldon Protocol: 4–8/08. Can't kill the yeast.